Sunday, 30 June 2013

Grump

Just a short post about the last few days because once again M.E is surprising me in new ways, how generous of it? Wow I have been grumpy these past few days. My sleeping pattern is all over the shop, mostly during the day though to be fair and it is driving me a little bit bonkers. Again I have been kept awake throughout the night in horrible pain in my legs and back, which makes it impossible to relax enough to fall asleep. So I have been mostly trying to get some sleep when I can or I'm just so exhausted that I have no choice in the matter.

Since starting these tablets neurontin I have also been feeling quite nauseous but it's hard to tell if that's just the tablets or that I am overly tired as well and not eating very well. M.E really does mess up your whole body. It feels like you try to deal with one thing but then something else rears it's ugly head. It is a non stop vicious cycle. Lately I have also been hypersensitive and not in the crying at the drop of a hat hypersensitive way, although I have been close to tear on a few occasions where I've not had enough sleep and I'm just lying in an exhausted heap. It feels as though all my senses are just on overload. Obviously there is the pain but one minute I am sweating like a pig and the next I am freezing cold. I have become so sensitive to the cold that I have had to wear long pyjama bottoms and socks in bed. The other night I had a pair of 3/4 length pyjama bottoms on and my legs were really cold. It wasn't even a cold night. But because they were so cold it made my legs stiffen up and hurt all the more and just that sensation of being cold was keeping me awake. It's weird. I've never had that before, not even in winter. My hearing too has been on over drive, everything just sounds 10 times louder than it usually would. It hasn't helped that my next door neighbours daughter is moving house and they have been packing and moving and slamming doors for 2 days from 7am. Then tonight they decided to have a party next door. Ahhh have it in your new house!!! See I am a grumpy bum. Of course they should be celebrating and it wasn't all that late. Then at the same time there was fireworks going on over the road. Honestly I was ready to just break down. What an absolute party pooper. If I could walk better and wasn't on my last legs with exhaustion I would have had the mind to go round there and just cry in their faces. Oh dear me. I very rarely get like that, only if  I have one of those really bad migraines where the whole world must stop and be quiet but for the last few days there has been times where I thought people were out to get me. Even the fridge! Honestly it has been so loud, well what I am perceiving to be really loud at the moment that last night I thought that someone was playing really loud music. When I went to investigate and found out it was the fridge I was a bit shocked and slightly embarassed.

At times my heart has felt like it has been racing too and just thumping in my chest, mostly when I am disgustingly tired though. But how are you supposed to sleep when whenever you lie down you can hear your pulse in your ears and your chest is jumping. It's impossible. Then you get all the more frustrated and tired and your pulse quickens. It really is a vicious circle and can be really scary. Especially when you have'nt experienced that symptom before.

It just goes to show I guess how much we need to sleep healthily. It really does affect us in strange ways and turns us into people we do not recognise. Then add that into the mix with M.E and who knows what you're going to get. Everyday  is different and a learning curve and when you start to experience something new it's easy to feel like you are right back at square one or just curse "what now?" And when you are overly tired it just becomes even worse.  However onwards and upwards with the fight. At least I can laugh now at my Diva strops at the fridge. "How dare it?!"

Friday, 28 June 2013

Thing's I learnt at clinic: Cause

Now before we begin let me just stress that I am obviously not going to talk about a definitive cause in this post because sadly as we know there is none and if there were then everybody would be doing their best to avoid developing this condition and we would potentially have found a cure. M.E can hit any body at any time, even children. It is more prevelant in the northern hemisphere and therefore generally but certainly not always in white people or caucassians. No matter how many medical tests that you have they will generally all turn out 'normal' or 'negative' and so you beat your head against a brick wall over and over again, wondering why then we feel like we're dying, that we sleep all night and day but still feel as though we haven't had any at all and ache from head to toe.

In my last post about personality I listed a series of statements that referred to doing things well and feeling a need to do things for yourself, which had a high response level amongst the attendees of the clinic, not just in that session but in others and enough for them to include it in the course syllabus. Perhaps there is something to be said for certain personality qualities being a contributing factor. Then again not all people that have type A tendencies are likely to develop M.E. I have a friend that has many type A attributes, she hates doing nothing, is constantly on the go, thinking about lots of different things at once and is many many things to many different people: Always more than willing to go out of her way for people, as well as working a busy job and travelling the country. But will she get M.E? It's certainly debateable and I surely hope she doesn't. Afterall we never truly know everything about a person, as well appearing to live life at full throtle pace they also may be more conscious of looking after themselves and take more time to unwind. Or be healthier. We just simply do not see it. Some people though can just live like that, simple as.

People can also usually track the onset of their M.E to a certain event, no not a party, but a certain trauma such as illness, virus, injection, operation, grief or bereavement after which they notice that they are not healing or recovering as expected. Often we do not allow ourseleves the time to recover fully either. Especially if it is taking longer than we thought it would. We stress about getting on with our lives, that the children need looking after and the house is a tip. That we have jobs to get back to and deadlines to meet. Especially in todays competitive job market. It is easy to feel that you are replaceable, that someone else is waiting to step into your role. Again apparently this is a type A thought process. Companies too are getting stricter about absenteeism, creating fear of getting a warning. Ultimately this means people are trying to rush their recoveries and in turn are not allowing their bodies to restore properly before returning to the rat race and straight back to pushing our bodies and minds hard. These traumas though are not something that we should rush even if we are risking diciplinary action. It is not as if you're hung over or are wagging to watch the World Cup. This is exactly what I did. Although I had been rushed to hospital 6 times with suspected appendicitis and was still in pain I was assured that nothing was going to explode, in fact back then they had no clue what it was, which meant lots of outpatients appointments and more tests to wait for. I didn't have time to wait for them and just do nothing, nor did I want to so I just tried to work through it. To enjoy this life that I had created for myself and felt so proud to have achieved. However the more I pushed the more my body pushed back. I have talked about me falling down the stairs, getting a nasty infection in my face and how my body went into utter melt down when my Mum was ill as well. Until I was caught out big style and my body and mind literally felt as though they had switched off and that has been a battle ever since.

So what I am trying to say is that people stretch themselves to thin and then life happens and you get stretched even more as your body is consumed by a trauma. Many people believe that they had Glandular fever before getting M.E and this has been the topic of much research but again there has been nothing definitive proven. Then you try and push through it but in doing so our bodies become susseptible or our immune systems weaken. Of course though it is not as simple as that because otherwisse a lot more people would have M.E and this does not explain why children get M.E because sadly there are many child sufferers. I am just reporting what appears to be a common factor in many M.E sufferers but again is that just down to this busy world we live in?  What else makes us susseptble is unknown  and the subject of much research. Is it a sleep condition? Is it in our genes? In our blood? Or our nerves? Whatever it is seems to be very good at hiding but let us hope that one day it will be found out and then we can start developing a cure.

Thing's I learnt at clinic: Personality

I was really nervous about going to the M.E clinic at first. I thought that I would turn up and everyone would just look horribley ill or be in wheelchairs. I was stil quite weary about meeting others with the same condition back then, somehow I thought that it would just make it too real. I'm not too sure how to explain it or why I felt that way. Call it denial or perhaps even fear: a fear of what was perhaps to come for me: a fear of not being able to relate to anyone else and an overwhelming fear of falling asleep during the session and seeming incredibley rude. I even joked that the waiting room would be full of people fast asleep, strewn out on the seats, like when you see elderley people fast asleep on their sunbeds on holiday with their mouths wide open and a book on their chests. However I got there and everyone seemed well 'normal', the epitomy of that tiresome phrase 'but you don't look sick.' I have since discovered that this is what is known as a spoonie. According to the Urban dictionary www.urbandictionary.com this is the name for a person that suffers from a chronic illness but doesn't look unwell, according to Christine Miserandino's spoon theory. More accurately this theory describes what it is like to live with a chronic illness in comparrison to a healthy person but I will go into that in more detail in a future post as it is very apt and could possibly fill an entire post. Anyway less about spoons and more about clinic. It was only when I heard people checking in at reception for the M.E clinic that I could tell what they were there for. The others I couldn't tell whether they too would be in the group or waiting to be called through to a podiatry appointment. Somehow this relaxed me and I began to hope that the group would be less about comparrison and "who has it worse" and more about support and insight.

There was 10 of us in the group, 9 females and 1 male. Lucky man right! Well not really no as he was blighted by M.E of course and if I was feeling like I couldn't relate to anyone then I definiely bet he was too. Apparently though this is a common occurence as statistically the composition of M.E sufferers is made up of 80% women. So why are women more likely to have M.E? Not wishing to alarm any ladies out there, so please do not scare yourselves. Could it be down to stereotype? That our personalities are so different to men's, the whole Men are from Mars, Women are from Venus concept. Well let's examine that: or more accurately let me relay what I learnt about that as the post title sugests. Now if anyone thinks that people with M.E are just plain lazy, can't be bothered or 'lucky' that we get to spend so much time in bed or resting, or not work then think again. Before most people develop M.E they are hardworking, successful, dedicated, compassionate people that will always strive for the best in everthing that they do for themselves and others. We take on many roles at work and at home, being many different things to different people. For example Mothers, Fathers, housekeepers, Husbands, Wives, bill payer, worker, boss, friend etc etc. The list could be endless. Generally someone with M.E will have more than 3 roles that take up a significant proportion of their time. This is where the theory about why more women than men develop the condition could stem from as women seem to take on more roles than men. Modern women in particular are striving to do everything and be everything to everyone. No longer shackled to the kitchen and surrounded by constant media feeds about successful women. We are almost programmed to think that we can take on so many roles, at home, at work, with family and friends. Blending being successful at work with being a home owner and family woman, domestic goddess and having an amazing social life. And why shouldn't we? There are plenty of women out there proving that women can have it all if they want it and good for them. Let's face it in this economic climate how many people can afford not to work or rely on government money? However for some of us we simply get streched to thin, playing all these roles and often putting others needs before our own that we neglect ourselves and never rest. So stereotypically, without being sexist as there are plenty of men out there that can identify with this, not the being mothers and wives bit of course though, it is easy to see how women fall into this category. The idiom A woman's work s never done springs to mind.

Whilst we were in clinic on that first session  we got asked how many of us identified with the following statements:

" If something's worth doing it's worth doing right"

"I've started so I may as well finish"

"I'll do it myself, I'll only have to check it anway"

Hopefully you catch my drift I have been trying to remember them and then think of similar phrases of a similar effect but my brain has gone blank. Basically they were phrases that suggested that only you could do it and that things can't be left half done or completed half heartedly. For example if someone else has done the hoovering then you may feel like they haven't done a good enough job and that you should have just done it yourself so that it would be right. When asked how many of us agreed with these statements though all of us put our hands up or the majority at least.

It could be argued that this means we have what is known as type A personalities. A type A personality is a term that was coined to describe ambitious, highly driven, successful people. Back then it was generally associated with business men but now more and more women are fitting that description. It also has negative connatations such as being highly strung, impatience and having agressive tendencies and has therefore been the subject of many studies into heart disease. But before anyone goes off into a panic because they have type 1 tendencies and fear having a coronary this research failed to take into account  diet and age and it's main demographic was managing directors etc. Plus we all know that stress has a negative effect on the body. We are simply not designed to cope with constant stress. 

Personally I know that I have a lot type A tendencies, well I say have but I am mostly referring to before the onset of M.E. Now of course that's just a bit too tiring and there is less stress. I was hardworking, constantly on the go, striving for the best for myself and going out of my way for others. I rested only when I slept and even then would sometimes wake up in the night my brain full of ideas and I ate and worked at the same time. Never able to just sit and watch the tele without doing something else too. What's more I chose to work in a demanding job, with lots of responsibilty and deadlines to meet as well as looking after others. It was both physically demanding, with long hours and heavy lifting but also mentally intense with lots of paperwork and health and safety assessments to complete. All very type A characteristics. But I loved it, getting there had  been my sole focus towards the end of my degree and as I have said it broke my heart when I had to stop and in accepting that role is a long way off my current capabilities. However I cannot relate to being highly strung, overly impatient and I am definitley not agressive. In fact I'm far from it, I'm pretty placid and nice and many a person would say quiet. That is not to say I'm a push over, I'm determined and quietly confident but have no problem in standing up for myself. Especially the more I found I was good at what I did. It made my confidence soar. I just don't fly off the handle and I have never particularly wanted to be loud or extravert to show my confidence, that just isn't me. Strange for a theatre student! I can head up meetings and give orders but I am more fun loving than a show off and unless I have to raise my voice then I won't. I often think that those that shout the loudest or overly show off are masking themselves. As for impatience well I can happily be in a cue unless I'm busting for a wee and can wait quietly in a waiting room- except the time that I had a major panic attack and was pacing the floor. I would say that these qualities are also true of the other people I was on the course with. No one seemed to be confrontational but everyone appeared to have busy lives, at work or home and identified with the above statements. In fact many of us could not see what was wrong with them. Why shouldn't we do something well? Or make sure a task is finished. Wasn't that normal? Apparently though it is only a select section of people that are switched on to this way of thinking. I still don't really see it as necessarily a bad quality but obviously M.E is beating that right now and I can recognise how it doesn't need to apply to everything. If someone else wants to do something then let them. Without checking or redoing. Of course I could be wrong about my fellow course attendees but that's how it seemed. Some people were more outspoken than others but then we were there to get help, desperate for answers about this maddening condition: it was a good time to be outspoken and if we are angry then it's because M.E has made us so. 

I will admit that I was one of the more outspoken ones because I wanted to get as much information as possible. They had got the nail on the head about my personality but I was adamant that these were good qualities and that I was so proud to have a degree that I had worked so hard for and stepping into a consuming career. When I got home I was absolutely shattered. The sessions can be quite heavy going. It's a long time and there's a lot to take in, not just from the clinicians but from the other members. I also remember that shortly afterwards when I started to digest the information more I got really upset because I thought that I had somehow brought M.E upon myself by being the way I am and I blamed myself badly. This of course isn't true, you can't bring M.E upon yourself. I just had to remember all that I had achieved from having those qualities and how I enjoyed helping others and there is certainly nothing wrong with being happy with yourself. In fact it's really important, especially after having depression and low self esteem. 

Anyway I hope that this has been insightful. Please remember that these are my personal experiences and some personal research. I am not a doctor or researcher just a sufferer who like many would love some answers. I'll be posting some more things that I learnt at clinic soon so keep watch.

Friday, 21 June 2013

Have you tried... getting pregnant?!

Recently I have heard of a very strange yet natural so called 'cure' for M.E/ CFS and that is to get pregnant! This news came to me via my Nanna, of all people. She'd heard of someone that was suffering from M.E and then they got pregnant and gave birth and apparently their M.E has disappeared but this is not the first time I've heard of this either. But before I rush off to the nearest sperm donors, thankful that I am not a man I thought I'd do some research into these bold claims, that seem to be too good to be true.

According to www.njcfsa.org/FACTPREG.tml a third of women who go through pregnancy whilst suffering from M.E/ CFS will show signs of improvement during their pregnancies, due to the extra pregnancy hormones rushing around their bodies and giving them more energy, generally after the first trimester. However before anyone starts skipping pills or pricking holes in condoms they also noted that a third of women's M.E symptoms remained the same; whilst unfortunately another third actually became worse during their pregnancies and especially after the birth. Often these women needed complete bed rest throughout their pregnancy and a lot of help once the baby was born. Furthermore some women that experienced an improvement in their M.E symptoms also relapsed after the birth and the pregnancy hormones have gone but positively some continue to improve. Once the baby is born of course your level of responsibility rises and your needs become secondary to those of the baby, creating more tiredness and neglecting your own needs, which can trigger an M.E flare up. What do you do when your baby is crying but your M.E is also acting like a needy child, desperate for your full attention? You can't ignore the baby but also it does no good to ignore your body, because as we know M.E will soon get your attention in another way. So are these people who claim to have got better by having a baby simply mixing up child rearing fatigue with M.E symptoms? Not wishing to discredit them of course and of course their is evidence of some improvement for some period of time.

For me however just the thought of having a baby whilst suffering with M.E is far beyond me, I simply can't fathom it or begin to see how I would cope let alone raise a child. Let's face it just the thought of  'babymaking' is tiring enough. I simply do not see how it could improve your M.E. Firstly the actual carrying a baby, I can hardly carry myself right  now and then of course there's the morning sickness and all your 'goodness' so to speak being devoured by the growing foetus. Would it not be fatigue upon fatigue? Then of course there is the birth itself. The link above also describes how most women will need a higher amount of pain relief and of course becoming too fatigued to push, which has resulted in many forceps births or cesareans. Due to this women are also more likely to need to stay in hospital after the birth for longer. Then of course you have to raise the child, nurture them and look after them possibly for the rest of  your life but this must be extremely difficult when at times you can't even look after yourself. Even after some improvement there are bound to be some flare ups in that time as your responsibilities shift because again as we know and I keep banging on about there is no miracle cure only management systems. Surely there must be some degree of of guilt that you can't help them as much as you want and I imagine there would be some level of depression involved. Personally all I would want to do would be to give them my full attention and be the best parent that I could be. Just like my parents have done for me and my siblings. If anything it would make me feel worse about  having M.E. Rosemary Underhill the author of the above link does note that any improvement shown during pregnancy usually dissipates once you begin caring for the child. Just look into the eyes of any any 'healthy' new parents and you can see the affect a new addition is having on their lives but add that to the consuming fatigue of M.E it just seems incomprehensible to me. How could I trust myself not to fall asleep whilst feeding the baby? Or what if my legs gave way while I was holding them? These thoughts terrify me but I doff my cap to any parents that are suffering with M..E no matter how old your children or whether you developed the condition before or after their birth.

I have looked through a forum on www.mumsnet.com about pregnancy and M.E and there is a mixed response. Some Mums have indeed improved and are luckily able to enjoy a fulfilling life with their child/ children, which is encouraging and lovely to hear. Whilst sadly others have reported that their M.E has become worse. All of them though said that they could not do it without a strong network of people to help. Family and friends and even social care if needed. Husbands to do night feeds. Relatives on 'watch' as you rest, or to cook and clean for you. Apparently this is common in Greek culture, although they have very little idea of what M.E is. I'm just showing off what I have learnt today. It's about saying yes to as much help as possible and not trying to tackle it all yourself, which is much the same as coping  with M.E. As much as you need to accept help though you also need to be able to be strict about saying no. For example saying to people that they can't just drop by when they want as you need to rest.

What was sad however was that during their pregnancies not many of their midwives/ doctors took much notice of the M.E. Usually any fatigue that they were experiencing was classed as 'normal'. Some of the mothers did need to be put on bed rest which Rosemary Underhill did suggest is common. Again it's about finding people that understand and will help you through and make sure that you and the baby are safe and healthy.

So there is 'some' evidence that pregnancy can improve M.E but how long for is debatable and just as long a you are in the lucky third of people that do show signs of improvement. Does this make me want to stop writing though and ask someone to impregnate me? No, it doesn't. Firstly, asides from the reasons I've already mentioned because my M.E has taken a turn for the worst lately with the possibility of having fibromyalgia as well. It seems a long way off being 'managed' which Underhill suggests is best for anyone wanting to get pregnant with the condition. Secondly the way things are I cannot offer a child all the things that I would want to give it, not just in terms of being born into a loving partnership or financially but because I need to focus on putting my needs first, which has taken me a long time to have to do and is necessary to coping with M.E. Finally and probably most importantly, because I don't really think that I want children anyway, even before I was diagnosed, having children was never high on my list of priorities. Don't get me wrong I love kids and would probably make a good Mum but so far I have not had an overwhelming desire to have children. Perhaps one day that will change but who knows? For now my focus is on adapting to this new way of life and also trying to enjoy it as much as possible. M.E can affect many women in their prime child baring years, which obviously can cause that debate between should I risk it now? Or wait to see if I improve? By which time it may be too late. It's definitely not a decision to be taken lightly as it shouldn't be anyway. At the end of the day though as ever only each individual knows what is best for them and what they can cope with and I have the ultimate respect for those that do manage to have so called 'normal' lives and successful pregnancies, which as research has shown is perfectly possible. It's definitely inspiring. I am in no way pessimistic or doubtful as to whether these women that claim to have made a dramatic improvement during or after pregnancy "clearly did not have M.E". In fact I'm happy to hear that people out there are managing their M.E and are able to get back to work or have children. However it's not something that I will be pursuing anytime soon, as much as I want to get better. For now my bed is for sleeping. Sorry Nanna.

Thursday, 20 June 2013

So you have your diagnosis now what?

So you're at the point where you have just been diagnosed with M.E/ CFS and can let out a small sigh of relief that there is a name for this monster that's been attacking your body and that it is definitely not all in your head. I'm sure there are very few people that could conjure up this all encompassing and debilataing condition unless they had experienced it. This is not a let's draw some red spots on with your Mum's lipstick and warming the thermometer on a hot water bottle type illness. Although it would be interesting to see Daniel Day Lewis go all 'method' acting for a role about an M.E patient. Then again they'd never get him to set. Anyway now that you have this diagnosis what do you do with it? Who do you see next? What medications do you take? Essentially what do you have to do to get better?

Oh if only we were given a magic lamp upon diagnosis! Because as I have said and as many of you will know all to well, there are no set answers to those questions. The medication that you take depends on the symptoms that you present and using a system of trial and error to see if they offer you any relief or make you feel worse. And symptoms can vary all the time, whether as part of the M.E or side effects from other medication. For example I need to take anti-inflammatories to manage my pain however most anti-inflammatories have an adverse affect on my stomach meaning that I need to take other medicatin to counteract this. This is made worse by the fact that I have a hernia so I have to be careful of that and have had to test different types of pain relieving tablets that manage the pain and do not upset my stomach. Sometimes it does feel like asking 'what would you rather have? This or the side effects?' But keep striving for what works best for you and your body. We suffer enough as it is without anything else being added to the mixing bowl. Who eles has a handbag that resembles a chemist shop?

As for who do you see next, if anyone at all, it seems to be very much a case of a post code lottery and depends on what services are available within your area. This is where you find out how much your local health board acknowledges M.E/CFS. Information on this can be found on www.meassociation.org.uk/?page_id=1382. They note:

'Please remember that while patients can contact any of the services for information, referalls for assessment, diagnosis and treatment must be made by your GP or the professional responsible for your healthcare.'

Also note that these are NHS services. The ME association has a database of support groups on www.meassociation.org.uk/?page_id=1185. As you can see it varies considerabley. Some areas have consultants with an interest in M.E and others have more specialised programmes or services that offer a whole body/ lifestyle approach in groups or individually. Sadly though some areas have nothing. I can only hope that in these areas that there are an abundance of good GP's that take M.E seriously and treat their patients with compassion. It is possible that you will only need to see your GP but again it depends on whether they are up to date with research and can see methods for improvement. Because this is what a consultant or service will offer you. Tested ways of seeing an improvement in someone's quality of life and a vested interest in wanting you to improve with their help. But there is help out there, don't let anyone make you feel as if there isn't. So it all depends on how you respond to different medications or methodologies or of course whether you want to look outside of the NHS.

Everything would be so much easier if there was a set notion of what M.E is? Or there was a typical M.E patient. But because there are so many variables it becomes harder to say what will help each individual and as I have previously mentioned our conditions are changing all the time too. Some people can continue to work whilst others need to cut back or not work at all and then of course everyones lifestyles are different and people are pulled in different directions. People have homes to run, children to look after, pets or caring for others and M.E will probably try to dictate these aspects at some point or another if not consistently. Sometimes it is like a needy child that will do everything it can to get your attention. Like when I was first diagnosed my legs worked fine unless I was extremely tired but now they are in constant pain. So this calls for me needing to access further help and maybe going through that whole rigmarole again of ruling out other conditions and probably landing once again at it's a flare up. It's not that you want anything more to be wrong. That really would be all. Just having a cold and M.E is torture upon torture but at least if the reason lay within the convines of "explainable" medicine there would be a better set of answers.

Surely there has to be something that is explainable. Why else would M.E exist? How can you go from feeling on top of the world one day to a crippled, exhausted heap the next without their being a "reason" for it? Because all your tests come back normal. Ahhhh it makes me so angry. M.E I hate you! I hope someday soon someone exposes all your dirty secrets and you are left quivering in fear as you are broken down just like you have done to me and so many others.

P.S I'm okay, not lost it just letting M.E know that it better watch out.

Tuesday, 18 June 2013

Communication error

Well that was an eventful night last night. Just after I'd finished blogging and trying to block out the paine eI text my Mum for help but 29 minuetes later she had still not come to my rescue so I rang her mobile but it went straight through to voicemail, hence the lack of response to my texts- blooming signal! I thought about ringing the house phone but there is something really taboo about ringing a house phone in the middle of the night, unless you know someone that's in labour but generally if the phone rings in the night I know my first thoughts are "who's died?" That or someone in an Indian call centre has seriously misjudged the time difference. So I let it ring twice to try and give a warning signal but still nothing and the pain was just getting worse. I tried to stand up but I just didn't  have the strength. So I somehow got myself out of bed and on to the floor, bending my legs and tensing the muscles was sickening. Once on the floor I tried to open my door by trying to pull on dressing gown but that didn't work so I had to try and stretch to open the door then try to shift the door and myself, which was not too much of a hassle on the laminated flooring but was a nightmare on the carpet the more I had to tense my legs to try and move but it was just torture. I burst out crying because the pain was overwhelming, I cried because I needed a wee, I cried because once again I was needing help in the middle of the night and had now woke everyone up. Then I cried some more at how on earth I was going to get up, I just didn't gave a clue what to do with my legs and then I cried at how much it hurt to do so.

It will be interesting to see why I have lost control of my legs? My GP thinks it might be fibromyalgia, which he explained was sometimes considered in the same bracket as M.E. I need to do some more research into it. Do you need to have M.E to have fibromyalgia? Or is what I am experiencing yet another symptom of the M.E? My GP has referred me to see a rheumatologist, so it will be interesting to see what he says? Or what tests I will have to go through. To be honest I am not getting my hopes up too much, because as we know the reasons for M.E etc cannot be explained by modern medicine at this stage in time but I will do everything that I can to help myself and I'm positive there will be something that will supplement my hot water bottle and laughter therapy.

Tonight I am a bit more prepared. I have massaged away some niggles in my thighs and armed with painkillers. I even have a commode by my bed, just in case. Now I do adore vintage but I think the chamber pot is perhaps a step too far but needs must. It is afterall better than doing any more damage. Definitely not the nicest of things though. I have also enjoyed a second trip out in the chair to meet a friend in Costa Coffee and she wasn't all that bad of a driver. It was rather funny though as she works in a nursery and still had her uniform on so she was pushing me around like the oldest child in town that had been left at the nursery 20 years ago. It was lovely to do normal things and also for my Mum and Dad to go enjoy a lovely meal and share some quality time that isn't household related. We've all got to keep our sanity with this and look after each other.

So let's see how tonight goes now.

And so we meet again 3am

So as you can guess from the title of this post it is 3am and once more I am wide awake. Yes I know I probably shouldn't be blogging as that's no way to achieve sleep but even if I wasn't I would still be wide awake. For the last few nights I have even left my notebook and tablet downstairs but then again I have been reading another good book that seems to have it's claws in me. For once I don't even have silly songs or questions dancing about myhead. Then again watch them all come flooding in now. What is keeping me awake though is this incessant ache in my legs. My muscles just burn so much and then they twitch and spasm. It is a nightmare to try and get comfy and when I do they soon play up again. For the last few nights I have tried massaging them before I go to bed and have noticed a small improvement but I generally need to keep toped up with cocodomol and strap a hot water bottle to them as well.

When I was at college studying Stage Manangement and working on shows there was a lot of heavy lifting involved and I would ache so much the day after a get in or get out. On one show we had to basically build a theatre, so stage, seating bank and it just so happened to be in a building with a glass domed ceiling, which of course is no good for a matinee performance so cue lots of moving and assembling of steeldeck (blocks of staging made out of heavy ass steal that 4m x 2m) and then getting onto the roof and trying to cover the glass dome without breaking it whilst stood in the rain and moss. And that's before putting up any lights, which believe me aren't all that light. But non of that compares to how much I ache with this condition. At least then I had a reason to ache and a sense of fulfillment.

On the other hand though I think I am also being a bit stubborn about sleeping. Do you everjust get board of sleeping? Like a child that won't go to bed beacuse it's still light outside. Something in my stubborn subconscious just says 'nah, not interested in doing that. You've been sleeping for most of the day.' It's funny because during the day it likes to say 'nah, sleep, sleep, sleep don't wake up just yet.' Perhaps this is because I am not sleeping until late at night or early morning so as they say my body clock is all back to front. But do we have a body clock with M.E? Surely the whole point is that that is the point; our bodyclocks are not back to front but every which way and any which way. I often see periods of being awake as a blessing, even at ridiculous o'clock but it is definitely not good when everyone else is asleep and you rely on them to get around or you feel like company. Likewise if you are asleep for most of the day then you miss out on company, or getting out, and important things like eatingg regularly. Even just glimpsing that small, teeny weeny bit of sunlight that will help us have a grasp of time and somewhere deep in the backs of our brains make us feel just a bit better.

Right now I am sufferingg with a combination of the 2. My legs are burning like mad and I really need to get out of bed to sort them out but everyone is asleep. I'm coming round to the idea of wanting to sleep though or maybe it's just the need to sleep taking over from my stubborness. Well I'm glad it listens to something. So I'll be off to try and sleep and try to ease this pain.

Night all

Sunday, 16 June 2013

An Ode to my Dad

Dad,

I may not always have loved you as much as I should have and will generally go to Mum first but that was never your failing or that you are second best. You simply do not share my love of shopping, nor do I feel as comfortable watching True Blood and lusting after Joe Mangiello with you. But you know I love you and appreciate all you do for me, which unfortunately over the last few years has become more and more. Instead of watching me spread my wings and forge my way in the world you have had to watch me curl up in pain and be confined to my room, because of this horrible condition. But because of it we have learnt to be better friends; it's just sad that it had to stem from something so horrible.

I love how we laugh together and even at each other, although let's face it, it's usually me laughing at you. How we get competitive watching Pointless or sing along to Neil Diamond in the car. I know I love to wind you up but that's because sometimes it's just too easy, with your insistence on always using the same spoon and love of hovering. It's just too easy to move the spoon  to a different drawer and who can forget Mr Cucumber pants, (I know that sounds wrong to all you out there, so I best explain.) Last year on holiday Dad decided to leave his swimming shorts out on the sunbed to dry as he went out for a walk and by the time he got back there was a man made out of pool noodles and a football wearing his shorts lying on the sunbed, ahem complete with cucumber and mushrooms. Let me say for the record that the cucumber was not my idea!! But it was hilarious. So yes you do get a lot of stick and are probably fed up of me waking you up in the night because I can't get down the stairs for a hot water bottle or more pain killers but that's because you sleep closest to the door. I do hate asking but I wouldn't ask if I didn't need to, not even I am that annoying even if I feel it and always apologise profusely.

Watching me suffer must be difficult and that is one of the reasons that I will try to keep my humour. To let you know that I'm still fighting and appreciate all that you and Mum do for me and of course because you make me laugh. Like just now when a liquorice allsort just fell out of your lap. I wish above all else that things were different but that I cannot change. I can only continue fighting and laughing and with yours and Mum's help I will get some quality of life back. So this Father's Day I just wanted to say Thank you with all my heart  and that I love you. So in all the crap that has come with this condition it can never take away our bond and I am grateful that we have become closer. I know it may feel like you're hopeless to help, but let me tell you laughter and hot water bottles may be small in size but mean the world and taking me on holidays as well of course. You and Mum are my rocks and I am a very lucky lady.

Sian xx

Night Owl

Have you ever had the experience of falling asleep on the couch and then when you get into bed and switch off the light you're wide awake? Well as wide awake as someone with M.E can be. Odd isn't it? It's not as if you're not tired as you were falling asleep minutes before but no matter how much you think you might drift off you simply can't. I know getting up and blogging about it probably isn't the most affective way of achieving slumber but at the moment my head seems to be full of ideas for posts. Or certain sentences will pop into my head and beg to be taken note of. I seem to not have the ability to say "okay that's all well and good but right now I kind of need some sleep, yes I know I've had lots already and thank you for that, I'll file it away and put it on the to do list whilst I shut down and focus on sleep." I literally get pestered until I act upon it, if I can. It's like my brain saying "erm, excuse me but you have not used me enough today so I would like you to now think of.... blah, blah blah!" No matter how pointless the thought is it's as if it is of the upmost importance to my health or life and it's not just at bedtime either but that is definitely the most annoying time for it to happen.

I have been like that for several years. It's part of the reason I would stay late at college so that I could get as much done and not lie awake thinking have I done this? And I have to say I slept better for it but was that simply through exhausting myself? During my dissertation I would have a notebook handy by my bed because I would get ideas in the night, actually they were quite good ones too, surprisingly. I can kind of understand it with things that are prominent part of your life at the time but what is with all this nonsense vying for attention and not being able to shut it out. I have spoken before about getting children's songs stuck in my head or needing to Google the lyrics to a Right Said Fred song. Honestly why? Yes I accept that I will have random thoughts but why do I have to give them so much air? Why can't I simply say "okay that's enough now but all thoughts are grounded for the night while I catch some zzz's." It's infuriating. I watched a program about sleep disorders not long ago and there was a woman on there that would be falling asleep downstairs but then as soon as she got into bed she would be wide awake mostly all night. The years of insomnia, (literally decades) had left her so anxious about going to bed that just that short journey upstairs was enough for that tiredness to disappear and for fear of not being able to sleep to take over and consequently keep her awake all night. So in her case her psychology had a lot to do with it and the more that she couldn't sleep the more anxious she got. It's the same with falling asleep in cars etc because the motion is inductive for sleep but also because the last thing that you are thinking about is sleep.

My brain might suffer from a touch of brain fog (haha coincidentely it took me ages just to write that so maybe not just a bit) and I can often go into a shop and not come out with what I went in for (isn't that annoying when you've pushed the boat out, and feel like you literally have, to get to the shop in the first place) but surely if something is that important then I can trust my brain to remind me of it at a more suitable time. I'm not sure I've been letting it have the chance too. It's always been problem: solution: solved: done in quick succession. Oh how I wish I could deal with M.E in the same manner and maybe that's why I'm often so frustrated with it, because I can't apply what I have come to rely on as logic to it.

The answer very clearly lies in the solution part instead of saying "full steam ahead, let's get out the notebook or Google those song lyrics". It needs to become "interesting but remind me again" or "just shove off." It's about changing my habits and psychology, which may take some time. Maybe leaving my tablet and notebook downstairs so that I can't be tempted. So while I can literally feel my head filling with more posts inspired by what I've just wrote I'm going to practice saying "no, not now" and put my pen down.

Saturday, 15 June 2013

Independence Day

So that's that done. The first practical step to accepting the severity of my condition, although I am still not quite comfortable with the term disabled, I'd rather call myself a mess. Or more positvely 'able to recognise that I need help to get better' and that now includes the more physical aspects and to claim what I am entitled to by having to suffer all this shittyness (sorry but it really is the best word.) After all I still have bills to pay. Yesterday I finally plucked up the courage to phone up the Department for Work and Pensions about claiming Personal Independence Payment, the new name and supposedly improved system for Disability Living Allowance. Well time will tell about the system but how ridiculous is the new name Personal Independence Payment, when in order to claim you have to lose your independence and it is because I am losing even more of it that I have decided to bite the bullet and make a claim. The criteria is based on 2 different sections, disability and mobility. For disability you need to require assistance with daily living requirements such as washing, dressing, eating, going to the bathroom, preparing meals, managing your medication or finance, reading and communicating. And for the mobility section you may receive this if you need help going out or moving around. Well that's a big fat tick. So which bit of this screams Independence? Am I singing Destiny's Child 'Independent Women'? No, I'm more likely to be singing the Beatles 'Help!' or more correctly texting my Mum to say "can I please have some breakfast and pain killers?"

When you ring up you need to be armed with all manner of personal details, so be prepared, then take a brake to get your breath back then phone. You need your National Insurance number, bank account details and Doctor's name, address and phone number. Once on the phone they go through all your details and you have to declare to allow them to seek more information from your Doctor or Consultant and for the Doctor to have your permission to give them the information, that you meet the residential and financial requirements for claiming benefits and that you have provided them with the correct information. There's probably  more but my brain is still fried after that 12 minute conversation. So now I just need to wait for them to send out the forms for me to provide them with more information about my err 'disability.'

In other news my wheelchair has been delivered. Freedom! Or should that be Wheeldom? I have hired it from the British Red Cross for 3 months but can extend it if needed and it is only a £35 donation to the charity. So this is at least me getting some independence, so to speak. When I put on Facebook the other day that I was ordering a new set of wheels I had various responses from " Do I need insurance?" to "are you getting in-line skates?" or "new suitcase?" from my Brother. Well I might consider a new suitcase for next time I head for the sun, which I would love to do imminently and I'm pretty sure getting in-line skates would just land me in a wheelchair anyway and as for the insurance well we'll see how my toes fair, as my Mum tries to navigate me around. How people do manage independently in wheelchairs I do not know? But fair play to them. Even my Mum needs help to get the chair in and out the car and as I have explained we live in a hilly area. So nothing so far is screaming independence but now at least I have the means to get out further than 20 steps outside my house or the car and because I'm not as mobile about the house at the moment it means that my parents can get out too as I can't be left alone for too long. As you can imagine I have been looking forward to this day and had to contain myself not to want to go out straight away but firstly my parents had to go to the supermarket and then I needed to go to see the nurse. As I was struggling out of the car an old man asked if I needed anymore help and then said that I'd just met a handsome man hadn't I? HaHa this made me giggle. Shame it wasn't Joe Mangiello or Ian Somerhalder though. Anyway after tea I couldn't wait any longer to get out and the lure of the retail park was calling. As soon as we got the chair out of the car the heavens opened and the rain came bouncing down, leaving me having to sit in an already wet chair and my Dad trying to push me and run as fast as he could to get to shelter. I soon discovered that when you go out shopping in a wheelchair everything that you want will be on a high shelf. When I say high shelf I do of course mean a shelf at normal eye level not that I was wishing to purchase a copy of Nuts magazine. For those in a wheelchair that do wish to buy a naughty magazine all I can say is I hope that you're shopping with a good mate, because the only thing on our level is Mills and Boon novels or kids toys. Mind you those Mills and Boon novels have some pretty racy titles. You also soon discover that till heights are also annoying. I was happy to discover though that the chip ad pin devices do come out of their holders but even then it feels like I'm a Hobbit at the Rivendell Council. The scariest moment of all though came in Tesco Extra on the escalator/ travelator/ magic stairs. Travelling agonisingly slowly on an incline not able to go any faster because your wheels become locked and hoping that your Mum can hold on so you don't tip backwards. It tuned my stomach, never again. If that was what is what it was like going up then there was no way that I was going on it downwards. The whole thing was such an experience that I simply had to buy myself a Lemon Meringue Krispy Kreme doughnut.

All in all though I'm glad I have it. I never thought that I would be but then again why would you be? It does after all symbolise that something bad has happened . For now this is my way of making the  most out of that bad thing. I am saying " no, I will not be confined and miss out anymore than I have to." This condition may be taking over my body but it is not going to rule my head as well. Mainly because I'm terrified of becoming extremely depressed again but also because I do still have options and I will use them. The end of the world is not nigh, although it feels like it when my you're lying in bed racked with pain and feeling extremely exhausted. But somehow we have to remain hopeful because you are the only one who can really get yourself through this, yes you can ask for help but again that has to come from you. You are the only one that knows exactly what you're going through and the strength it takes to try to accept what is happening without letting depression , bitterness and anger take over. So do I feel depressed or disabled by needing a wheelchair or for claiming benefits? No I sort of feel empowered because I have made decisions to help myself and what's more I have managed to spin what I thought was a symbol of inability and sadness into something  positive; meaning my head is actually in the proverbial 'good space,' which actually is priceless.

Wednesday, 12 June 2013

brain fog

It's Wednesday today so that means only 2 more days of incaseration and I can at least watch and laugh at the latest episode of The Apprentice. Where do they get these candidates from? A couple of weeks ago one man picked up a bunch of carrots and asked what they were, unfortunately he was Welsh, so he didn't do this beautiful nation that I call home any favours but it did make me burst out laughing and as I have said many a time laughter is a great medicine. Today is also my nephews sports day so I'm fairly miffed at not being able to go. Damned legs.

It has been brought to my attention that in my post 'travelling with M.E' I misspelt the word queue or rather I used the other definition of the word and said cue. I'd like to say that that was a simple "I am a stagemanager and I have so many cues, darling" that they're consuming my brain type mistake. Or that spell checker should have picked up on this, which of course it should have, especially with this strange language of ours where we use the same word for different purposes and just change the spelling slightly. Surely someone could have invented a new word for whichever one was invented second. I think that it was probably queue , as of course we have formed our language from centuries of other languages and then decided to spell them a completely different way to how they are pronounced. This was always difficult as I learnt English as a second language, as many people do across the world today. Let's take for example the word "once"  surely it should be pronounced "on-see" and then we have the dreaded word "queue" in this form why not say "cue-youey"? Then their is the plethora of silent letters, such as know or pneumonia. What's with that? I am trying to learn Greek at the moment and even though their alphabet looks err for want of a better word well "foreign" ( see silent g again) to be fair ones you know the letters you can pronounce a word. Back to the point though of why I think queue was the latter invented. It's because queuing is a very British custom and as I said we liked to pick up words from other places. We can't stand queuing (I nearly fell victim to the cue situation there) in ours cars though can we? Mainly because you can guarantee it's on the hottest day of the year or you need to get petrol and that your bladder always decides that it is going to burst. Did you know that it is legal for a man to urinate up against the front right tyre of his vehicle on the roadside? Well now you do and now you know some of the random bits of information that float about my head. Let us all spare a though for the poor person in the passenger seat.

Now I would say I'm fairly intelligent but sometimes having M.E your brain goes void. Sometimes I can't even string a sentence together or I'll know what I want to say but can't think of the words. Sometime I even forget why I wanted to speak in the first place, which can be annoying when what you wanted to ask for was help getting upstairs and 15 minutes later you're fasto on the couch. Recently the funniest of my brain fog incidents have occurred watching 'catchphrase'; I do love that show and like to think I am a catchphrase genius by shouting out the answers. Well my two classics have been "the ears have walls" and "straight from the fishes mouth". Luckily I can laugh at myself and did find these incidents rather funny. This is why whenever I make a quick whited joke I'm secretly quite proud of myself and thank my brain for being on form for that moment. But for every crazy answer I do give a lot of good ones and I recently most definitely redeemed myself watching 'pointless' this week when I knew that the Democratic Republic of Congo was formally known as Zaire.

It can be hard to deal with, especially as I used to be always using my brain at university and in stage managing. I was even the go to proof reader for assessments because I am a massive nerd and I actually quite enjoyed doing it. Don't worry even I thought that this was a bit weird but I had it explained to me that it's because I have an eye for detail and patterns linguistically speaking and I'd like to think it's because I'm a good friend too. So finding out that I used the wrong 'queue' is a bit disappointing and then not to notice it as I edited is poor but in my defense I had been speaking 3 languages that week and quite frankly I'm only human and that is the very least of my problems.

Now that my body is really suffering I want to concentrate on using my brain more. Learning Greek is definitely helping, I just need to find some more good websites that are also free and then there's the blogging too, which I'm enjoying and I'm reading like there is going to be a book amnesty. Hopefully this should all help with the "what have I come in here for?" moments and be less embarrassing come the next series of catchphrase. If not then I'll just continue to laugh and then blog about it. And just to set the record straight I do know the difference between queue and cue.

Tuesday, 11 June 2013

Cabin Fever

Today I have woken up feeling utterly miserable. I didn't manage to wake up until 2pm either as I couldn't keep my eyes open and I only really woke up then before I wet the bed. As I have said before I do think that the psychological affects of this condition can be much worse than the physical, although that is why I'm feeling low in the first place. I just don't cope well with being cooped up for too long. It's not even that sunny a day today to try and sit out in the garden and my brain is a bit too foggy to be able to concentrate on a film or something. So I thought I'd blog instead and try and get some of my feelings out.

I have taken to my bed because I feel so rubbish but at the same time I feel a bit guilty because like I said I didn't wake up till 2pm and because being in bed doesn't exactly do your mood any favours. It's difficult to know what to do at times. Especially when physically  you can't move about as much either. Going downstairs does mean having some company but at the moment myself and stairs are not the best of friends. I have even tried going back to sleep but even that is eluding me at the moment and it kicks off that viscious cycle again of I have already slept long enough and it is not going to improve my mood. Somedays when I need it I can happily let myself sleep 18 hours but today because I feel so bored and miserable I feel as though I should be trying to help myself feel better not going back to sleep.

It's a difficult one but understandable. Especially after being on holiday where although I never ventured further than the restaurant next door and that one miraculous day that I went to the supermarket I was at least out by the pool and gabbing to anyone that would listen. Not strictly true because I do have some good friends there and the restaurant just so happens to be my favourite restaurant ever.

To make things just that little bit harder my wheelchair isn't being delivered until Friday so I feel all the more trapped. I thought that I would be feeling completely depressed about needing a wheelchair because it would be a constant reminder of just how much my body has changed but after the airport incident I am trying to see it as a positive thing. At least I will be able to get out and live somewhat normally without creating even more fatigue and pain. Who knows how I will feel once it arrives and I am fed up of being bashed on the head or have broken toes? But with every painful step around the house and days like today when I don't know what to do with myself the more I'm seeing it as a sign of freedom. Of course I'll still need help to get out in the first place and unfortunately we live in a hilly area so I best not attempt to go out on my own or I may be in plaster and have no teeth aswell and then I probably will feel sorry for myself.

Monday, 10 June 2013

M.E and mental health

In my last post I talked about some past physical aspects that may have contributed to my M.E diagnosis. Notice how I say 'may' as I have already explained there is no conclusive evidence to say for definite why someone contracts M.E. So in this post I am going to focus on the mental health factors or psychology. I'm not saying I'm a nut job but I have had my share of depression and anxiety as can only be expected from someone who's also had much physical bad health. And because everyone is sussepible to mental health issues, it's part of life. I think though that people associate the term mental health with the more serious conditions such as paranoid schizophrenia, or brain damage and being locked away, given electric shock therapy and labotomies and therefore it conjures bad images. However put simply it just means the state of your thoughts or emotional wellbeing. For example how much do we revere people like Stephen Fry for their intellect and yet he is dogged by bipolar disorder and has recently admitted to attempting suicide last year. Or cyclist Victoria Pendleton, who after winning her first meddle at the Beijing Olympics still felt the need to self harm. In layman's terms 1 in 4 people who experience mental health issues at any given time so why is it still a stigma? For more info on mental health and for advise www.mind.org.uk is really helpul and is a registered charity that aims to help those in need and break that stigma.

Before they found the ovarian cyst and subsequent bowel troubles I led a very active lifestyle. I actually never stopped (only sometimes during the summer holidays) and was a very competitive sports woman. Maybe even a bit of a big head but you kind of need to have that mindset when you're competing, as long as you know when to tone it down. After that first hospital stay though everything stopped. I was in too much pain to go to school let alone do any sport. So basically I was cut off from everything socially, as well as not being able to do what I loved. In high school I think it's true that everyone is bracketed into categories or roles, as sad as that is. My role had been the sporty, competitive one who'd always have a tale to tell of where I'd been competing that weekend but when I couldn't do that anymore I think people struggled to 'reclassify' me. Let's face it although you are supposed to spend your teens 'experimenting' and finding your feet in life if you step too far you're likely to be outcast, even though you're still the same on the inside. Eventually my role became 'the ill one' who people would try and get an electric shock from my tens machine from, and then I became 'the one that's hardly ever in.' In this time people move on, especially at that age where life is very much about being in the moment. I certainly wasn't the same person anymore and neither were they and when it's a group it's much more intimidating. In no way am I saying that I was bullied just that when I did go into school I would feel completely out of the loop, there was even another girl sitting where I always sat. I felt so alienated and of course when you're a teenage girl with bowel problems could it be anymore embarrassing?

Soon enough it all got too much for me and looking back it's understandable why. It got so bad that I couldn't even be anywhere near school because I 'd panic and when I was there I'd shake and imagine that the walls were sweating. I was lucky that I got my head of year on side and she did evedything in her power to make sure I got through my GCSE's. Everyone used to call her Hitler beacuse she was so awful but in the end even she shed a tear when I got my results. During this time I saw a few councellors at the National Children's Home and a children's psychiatrist who tried to convince me that the way I sat on the toilet was affecting my mood. Seriously! As you can tell I don't seem to have much luck with psychiatrists. I begged to never see him again and although the hospital were a bit cheesed off I didn't. The councelling did help though and they helped me try to start enjoying life again and to help me deal with the panic attacks, so that I could at least spend a few hours in school. The problem with councelling though is that there is often a waiting list and sometimes it's only as good as during the time you're recieving help and of course whether you get along with your councellor. This is why it took me a few attempts but even just talking to someone that doesn't know you personally can help you understand. But of course between the ages of 14- 18 summing up your feelings and the reasons behind them can be difficult.

I think though that what I owe most of all for my change in confidence was starting drama classes, because although it was scary it was also liberating and I got to meet a new group of people that didn't know me; they could just accept me as I was. I was lucky that it wasn't a class that has 'stars' or 'favourites' and therefore everyone was allowed to contribute and work as a team and therefore my confidence really lifted. Too me theatre is underrated, it is actually magical and I owe a lot to it. Maybe I am being a luvie but then again Attraction have just won Britain's Got Talent. Consequently by the time I reached sixth form I was attending all my lessons. The only thing I couldn't do was stay there all day or be in the common room for too long but as long as I had a definite aim I was ok. All I wanted was to try and be as normal as possible and this included wanting to go to university to study drama so that I could pursue it as a career. Let me just add that whilst I was in sixth form the sole emphasis seemed to be on getting into university, it's like you had to go and look now most people even with degrees can't get a job never mind a decent job.

When I was 18 however I was simply not ready to go to university and it was hardly surprising really. I hadn't spent my time gaining more independence and learning how to handle my drink like normal sixth formers. I lasted one term at a university bout 2 hours from home; I tried to make a go of it but everything was wrong. There was 200 people,on my course alone, so I was overwhelmed and swallowed up. I also hated my flat mates and they found me boring because I hardy drank and wasn't sleeping around. In the end I was making excuses to prolong my weekends at home and when I was there I'd hide in my room, curled up in a ball listening to my flatmate play James Blount "Goodbye my Lover"at full blast, I still cringe when I hear him.  I was scared to go in the kitchen. In hindsight this might not have been a bad thing as if I had done I probably would have contracted septicemia or some nasty fungal disease and would be typing this blog with my mouth and a stick. It was hideous. There wasn't even much point in me going in there anyway as they'd used my dishes which were festering in a sea of what looked like vomit and cheese toasties and most my food had been eaten. I completely broke down and all it took was for my Mum to take one look at the kitchen for her to drag me home. I thought I would feel like a total failure but at first all I felt was relief and badly shaken up so I went back for more councelling and was put on fluxloxitine.

Over the next two years I started to embrace life again (sorry for the cheese). I accepted that it hadn't been the right time for me to go to university and nor was it my fault that I had to come home or was bullied. I could always go back to university when I was ready and if it's what I wanted but for now I had time to build myself back up and try new things. After a short time I got a part time office job and then the following September I started at a University close to home where I grew even more in confidence and happiness. Even managing to go away on city breaks with friends, which was a feat in itself as I could cope in the hussle and bussle and not even feel a bit panicky.

I've been told by many people that it's very common to feel lost once you leave university and so it was with me. At the time I had not gained a place on a postgraduate course and and after 3 years of working towards a goal, especially the last year in which I knew that I wanted to be a stage manager I felt completely at sea. I have never experienced depression like it and neither do I want to again. It was completely overwhelming and rendered me completely bed ridden too scared to leave my bed or I'd be hyper and wouldn't be able to stop moving, even to the point of shaking violently. My thoughts were just so dark, which scared me all the more. I even self harmed, which completely terrified me. Why did I hurt myself? Why did I even want to hurt myself when previously I'd been happy with who I was and who I was becoming? I just needed to do it. It's really strange because knowing that you're going to harm yourself brings a sense of calmness, but in no way is it a solution to an anxiety attack it only creates more problems and physical pain and you can also guarantee that it will be the one day that you want to roll up your sleaves because we're experiencing a tiny bit of summer. For more information on self harming then visit http://www.mind.org.uk/mental_health_a-z/8006_self-harm. It is something that I never thought that I would do and yet I did and luckily there is help out there. It does not make you odd or a goth it means you're hurting.

 Because of this I had to have a fair few psyh evaluations, luckily with nicer psychiatrists than I'd had in the past, there was no judgemet they just wanted to listen and help me get better. They arranged for the home treatment team to come visit me everyday and then once a week to help me deal with my emotions in the moment and work on a long term solution. This is a great service as it really helps you understand why you're feeling that way and gives you advice on how to deal with anxiety etc. For example snapping an elastic band against your skin when you feel the need to self harm as it has the same affect but is much safer while you learn to deal witb tbe underlying reasons. If you suffered with social anxiety then they can also help you to get out of the house and be there with you. It really is an excellent service as it means more people can be cared for at home if possible, for example anyone that they feel needs additional care but being committed would hinder their progress, as it means you can learn to face your problems directly and not have to readjust after being in hospital and breaking the routine of being institutionalised. And then of course you get the extra help of friends and family. Of course there are too many tales of the system letting people down and people not getting the help that they need but there is much good too. It just the good news doesn't make for as exciting news coverage. I did warn you all I was a keen advocate for good mental health. During this time I was also put on citalopram after going a bit loopy on fluxloxitine and I had some diazepam for when I got really panicky and I would see my GP and councellor once a week.

Just after I'd finished at university I had applied for a masters degree in stage management and no matter how depressed I was somewhere inside me I was still determined that I had to do it; and I did, I got in! This is just what I wanted and so I fought to beat the depression, even though some professionals told me it was too much. The only thing that I could think of was that this was what I'd worked so hard for and I'd achieved, of course I had to grab it. Yes I knew that I was still fragile but now I had the perfect incentive to want to get better and I would only risk feeling worse if I didn't take up this opportunity. I was armed with the tools now to help me and I'd stopped self harming. Please don't get me wrong depression is not a quick fix solution, some people can achieve what they thought they wanted and still be depressed, such as Stephen Fry or Victoria Pendleton. I think maybe a part of me will always have that tendency but you can get better with support and understanding the reasons why you're depressed.

As I have said I still have days now when I am utterly miserable because of the M.E and once again missing out but I've learnt that it's perfectly okay to feel that way; as long as you don't let it embitter you and takeover, which can be very difficult. Again it's about having that support system, talking and learning from the past. I never want to be that depressed again ever.

So what does this have to do with the potential of someone being an M.E candidate, or myself inparticularly as I'm not saying you too will get M.E if you've had depression. Well psychological distress can be just as taxing, if not more so than physical pain. Leaving you vulnerable. Anyway apologies if the last 2 posts have seemed like a sob story. I'm not after sympathy, because honestly the most important thing is that from each experience I've took something from and they have helped make me who I am today. No not just the girl that falls asleep on buses and has the leg strength of a new born foal, but someone who will always try to find the best and keep laughing through it all and most importantly a person that I like being. Not having M.E would be lovely though.




medical history

There are many speculations about why someone may develop M.E ranging from lifestyle to genetics. Visit www.supportme.co.uk/causes here for more information regarding the research findings into the causes. I'll also go into this in a future post, so you can all do some homework beforehand. In the post 'where it began' I mentioned my rather large set of notes, in fact they are now so large that I am now onto a second folder. There are people in their 90s with smaller files than mine and good on them. The reason I mention this is because it's intriguing to know whether any of this could have had any affect on why I developed M.E. So in this post I'm going to talk about the physical aspects of my past health. Brace yourselves.

Other than being born my first experience with hospitals came at the age of 6. It was the eve of my school Christmas concert and I was all set to be a squirrel, yes a squirrel! Apparently us Welsh have our own version of the Bible where squirrels are an important part of the Christmas tale. Come to think about it I think it may have been Red Riding Hood. I came home from school and was getting into my squirrel costume when my mum noticed that my ankles were bright purple and swollen and when she took me for a wee it was completely red, so she got a sample and rushed me straight up to the doctors and then the hospital. Of course I was just disappointed that I never got to show the world just how good a squirrel I could be. Thinking back I must have been in agony but of course at 6 you don't know any better.

I was diagnosed with Henoch Schoenlein Purpura, http://www.nhs.uk/conditions/henoch-schonlein-purpura/Pages/Introduction.aspx here which is where the white cells in your blood start attacking the red cells; hence the big purple patches and it also affects your joints and stomach. As I say I was 6 years old so I don't really remember much about that time, apart from being sick all over my doll, wanting to always play with the dolls house and getting upset if someone else had it, my sisters visits where she would draw me pictures of sheep with Wellingtons on, riding skateboards. I thought she was the coolest person ever and the other thing I remember is some boy became my mortal enemy for stealing my wheelchair and taking it for a joy ride. However my my Mum tells me that I was not a well bunny at all. I remember being allowed home for Christmas and got absolutely spoilt rotten, I got my very own dolls house but it was a Sylvanian families one, now that is being spoilt. Even back then I knew that they were pricey so I was very pleased. Of course Father Christmas had footed the bill anyway.

Over the next year or so I was to and throw from the hospital. I remember getting cystitis a lot and I couldn't keep anything down or in. I was constantly violently sick or had diarrhoea. My Mum had to make makeshift nappies and carry towels with her if we ever needed to go out. Mum worked at home fortunately but I'm sure the children she looked after didn't really appreciate being puked on. So my sincere apologies. I was so thin that I had to have those build up milkshakes. In time though I got better and went back to school which was quite daunting, it was almost like starting all over again.

Moving on seven years and apart from needing an x-ray on a sprained thumb and all too many hospital visits to relatives I had little to do with hospitals, until that is one day at the age of 14 I came home from school feeling sick and had blood in my urine. Of course the first thoughts are the Henoch Schonlein is back but as it turns out it was an ovarian cyst that had heamorraged. I tell you it's not very often the gynecologist visits children's ward but he explained that he would put me on the waiting list to have the cyst removed.

To cut a long story short, after the operation to remove the cyst I was still experiencing chronic abdominal pains and going to the toilet a lot more. As it turns out they also thought that I had irritable bowel syndrome, which had probably been aggravated by the cyst and ibruprofen. Ever since I have had a trouble with my stomach and bowels. I have seen several gynecologists (I know they don't do bowels but they were looking for other causes such as further cysts or endometriosis), gastroenterologists and dietitians. I have had a camera up and down and all around (the less said about that the better,) scans, x-rays and non of them ever came up with anything conclusive other than the IBS and yet I was still in pain. So all these appointments and tests constitute a large section of my notes.

When I had the severe abdominal pains two years ago and was admitted to hospital 6 times (creating more notes) they decided to really push the boat out to try and get an explanation that was more consistent with my symptoms. Afterall each time I was admitted I had to go through the same rigmarole of them thinking it was my appendix and being dosed up on oramorph. I had the MRI scan that I mentioned and a capsule endoscopy. MRI scans are pretty scary but I wasn't as nervous for this one as I'd had another in the past, however when they scan your small bowel you have to drink this medication, 1 and a half litres of the stuff! Now it says in the guidelines that is a very slight laxative but what it does is help them get clearer images of your dietary tract, however of course my stomach being the hyperchondriact that it is decides that world war 3 has struck and everyone must evacuate. The doctors said they'd never had that happen before but then again that is why I was having the test. Of course I needed to not lose any more of the medication for the scan to work but every time I went to get on the scanner I'd have to run off. In the end I had to wear one of those big granny pad things like a nappy and thank god managed to get through the test. I think it was the longest half an hour of my life. They also have to strap these imaging plates to your stomach so you are literally strapped in. Not good at all and apologies if I've grossed anyone out. Trust me though! Capsule endoscopies are quite rare as most conditions can be confirmed through scans and other endoscopies but basically what it is is a capsule that you have to swallow that has an imaging device inside it and it photographs the inside of your digestive system. How very sci-fi. Tom I know you will be having film ideas. The capsule actually flashes too, which is rather disturbing, but it just means that it's working and sending information to the belt pack that you have to wear, which is attached to lots of patches and wires on your belly. It's really quite heavy and all very weird but it makes for an interesting tale. You have to wear the pack all day and then it takes a few weeks for the results to come through as it takes thousands of images which all need reviewing. When the results came back they showed I had a hiatus hernia and some ulceration of the small bowel, which just so happened to be in the 'large area' between the gastroscope (the one you swallow) and the colonoscopies reach.

It was a huge relief to finally have answers and luckily I can manage them with medication. My gastroenterologist at the hospital did say though that he saw no reason why this should be causing me pain! What?! In fact his letter to me said that the findings of the capsule endoscopy where 'inconclusive' and yet he'd told my GP about the hernia and ulcers. I phoned up his secretary and even she was baffled as she'd seen the images. Sometimes doctors baffle me but thank goodness they let me have the further tests and in my eyes that's what I have and had been causing the pain.

Physically I have also had to see the rheumatologist because during my undergraduate degree I had a lot of pain in my wrists and lost some grip in my hands. No naughty jokes please! So this meant more scans and x-rays and a nerve conduction study to test for carpal tunnel syndrome. This test is another strange one, so I'll give you the details. They place electrodes at specific parts of your arm and then run a small current through it to measure how long it takes to get from one point to the other, to check for nerve damage or blockage. This is really strange as when the current goes through your arm twitches and at one time it makes you wave like the Queen. However all the tests came back clear, so they sent me for occupational therapy to teach me how to do simple tasks easier. Like using a thicker pen to write with so your hand isn't as cramped up and using both hands where possible to spread the weight. Soon enough though they started to improve. It was all very strange but I guess that's me.

So there are a few things there that might have contributed and some things that are otherwise unexplainable. It would definitely be interesting to know if anyone else that has M.E also had Henoch Schoenlein when they were younger, as it implies a weakened immune system. All together I think it's definitely left my body weakened and it always seems to have been long illnesses that as time progressed I've just tried to live as normally as possible with. At one point I even put back an operation as I didn't want to get the lowest mark for an assessment and let people who hadn't been showing up get a better grade than me. Maybe this has had some effect too as I've not been allowing my body to recover and not listening to the pain signals; switching off that signal from brain to body that tells you too slow down and rest, which is a major part of having M.E.



Thursday, 6 June 2013

Travelling with M.E

Just updated this post as it had a few brain fog errors. Originally posted at the start of June 2013.

Well I made it to Kos and back but what a journey it was! The night before going I felt tired and thought that  I would sleep but even after my anti inflammatory and some cocodomol my legs were still in agony, so I started to really panic. How was I even going to get out of bed nevermind walk around an airport and onto the plane?  I had a look on the internet firstly about the regulations of taking a walking stick onto the plane. I thought there would be all kinds of security checks and charges, especially as we were flying with Ryanair. Apparently though there are no regulations and passengers that use a stick can take them on board without incurring any charges. However even if I had a stick to help me (not that I generally do but my Mum does have a fold up one from a previous injury) this would still mean being able to walk some distance and at that moment I couldn't even contemplate putting one foot in front of the other. So I looked up the special assistance options. Not that I knew at the time that's what it was called, I thought it would be called disability support or something but of course we live in the land of political  correctness now and I'd like to think I'm special haha. I had hoped to phone up to arrange something but their phoneline wasn't open on the weekends, nevermind at two o'clock on a Sunday morning. Generally special assistance needs to be booked in advance, at least 48 hours before so that it can be put on your boarding pass and arrangements made. However I thought to myself surely they must have some kind of last minute assistance for 'I tripped up and sprained my ankle' type situations. The only thing that I could find was the phoneline and according to that accidents don't happen after 5pm on a Friday. Or in my case a M.E flare up gone wild. My panic levels were getting worse. I just had to hope that when I got to the airport there would be some kind of help available. Fingers crossed arms crossed, everything crossed except my legs as that would be too painful.


At Liverpool airport vehicles can't drop off right outside the terminal building, which I didn't know before as I'd never been, so there is around a 200m walk. Not far I know but a thousand miles in M.E flare up mode. By the time we got inside I was crying with pain and because I'd seen the queue to check in and my heart just sank. As I have said before I am not one to give up easily however I had just had enough and to make things just that little bit worse the special assistance desk was closed.

Firstly my Mum thought that we should sit and wait until the queue had gone down but the longer we were waiting the more people were joining the queue, as there was a few flights booking in. All I was thinking was that this was only the first of the queues, we would still need to queue for security and at the gate and as I'd never used that airport before I had no idea how much walking there would be. Luckily by this time the Ryanair desk was open and my parents went to ask for help. After some tooing and throwing between them and the now open special assistance desk because there was no paperwork and the request needed to be put onto the system I finally got a wheelchair and Oh the relief was tangible. I was nearly crying again. So I was straight into the wheelchair and straight to the front of the queue, well the special assistance queue.


Being in a chair is a strange experience. Firstly because conversations literally go over your head. Usually Mum and Dad rely on me to answer some of the questions but because I was in the chair it was like 'Where's that voice come from?' Also my Mum isn't the best of drivers in the wheelchair sense I think she forgot that I had feet and so kept bumping me into the walls, especially in the lift and of course people are too busy trying to find the toilets or their gates to notice someone in a chair. So it's a pretty scary experience but a relief all the same. Especially as there was a fair bit of walking and stairs considering it's a small airport and there was hardly any seats at the gates.


Whilst waiting at the gate to board I got talking to some other people in wheelchairs. One man, his daughter had M.E and so was very understanding. I think a lot of people were thinking 'Oh what's wrong with her, she's only young and not head to toe in plaster.' It's either that or you get the sympathetic smiles. Anyway this man who's daughter had M.E also had a neighbour with it and she swore by Gold injections. Yes that's right Gold!! Apparently they did her the world of good. I can't imagine you can get them on the NHS though and wouldn't really like to hazard a guess at how much they would cost, but it was definitely worth it for her and excuse the pun but that has to be more than it's weight in Gold. Has anyone had any experience of this?


I was wheeled right up to the steps of the plane, where I got to push in and go straight up the steps very very slowly. If you can't manage the steps then it is possible to use the lift, it's like a van with a scissor lift either end that lifts up to the plane doors. Again this is best booked in advance so that it can be waiting by the plane. Luckily we had reserved seats at the back of the plane, which is one of only a few rows that you can reserve on Ryanair the rest is sit where you like or pay for priority boarding to get on the plane first. We had reserved these seats as last year we had been constantly kicked and shoved in the back and at least on the back row this wouldn't happen. I have since learnt that if you require assistance then you are not supposed to sit on the back row and there is no need to reserve seating as they have to save 2 seats for you over the wings. This is so that in the event of an emergency you can be evacuated easily, but who wants to think about that! It's definitely worth noting for future reference though and can save you money. The back row was handy though as it's close to the toilet, even though I hate using the loo on planes. I'm always convinced that it will be just my luck that we will hit turbulence at that point and there is always puddles on the floor. So no matter how hot the country is that you are travelling too, never wear flip flops on the plane!! You can always put them on when you disembark. After making it onto the plane I arrived at my seat only to find a fully grown woman with a dummy in her mouth in my seat. At least I wasn't the weirdest one on board.


When  we arrived in Kos after a scarily bumpy flight (I'm not ashamed to say I did turn rather dramatic) there was a wheelchair waiting. I think I needed it even more by then after being cramped up for 4 hours and  my legs felt weaker from all the panicing. When I panic really badly my legs shake like mad, so I was even more jelly legged getting off the plane. I was impressed however that there was a chair waiting with not having pre-booked but as Ryanair had put it on their system they were able to communicate this to the staff at Kos airport. Luckily their wheelchairs were ones that you can wheel yourself, so I could get myself to the coach whilst Mum and Dad dealt with the luggage. Although trying to get up the ramps was quite funny. Of course Dad only lit upon the idea of getting a trolley for the bags when we were back in Liverpool but oh well we know for next time. 


For the first few days my legs were quite painful and I could still barely walk. It was funny trying to get down onto the sunbed but I hoped the sun would do some healing and luckily my room was on the ground floor and my favourite restaurant is less than 20 meters away and the owner would always help me walk back. I am good friends with the family that own the restaurant and again they were really understanding and made me feel safe. I think it definitely helps knowing where you're going and being surrounded by people that understand is a bonus because they know why you've had to leave half your dinner before you fall fast asleep in it and won't be offended, which did actually happen. Or you're not being dragged away drunk. I also bought one of those pool noodles to try and exercise my legs a bit to see if that would help. Sitting on the edge of the pool with the noodle under my feet in the water I would slowly straighten my legs and return them back down. The resistance from the water made for a really good stretch even resting my legs on the noodle under the water I could feel the stretch. I'm not sure how much of an affect this had as my legs were still sore but anything's worth a go. Then I couldn't get myself back up again, which probably gave everyone around the pool a good laugh or a perv. 


Anyone anyone that's been to Greece will know that the bathrooms are more of a wet room with a shower head that you have to hold up yourself  (well the basic hotels do as it helps save hot water and means there is enough for everyone.) So in order to have a shower without going splat on the floor I bought in one of the plastic chairs from the balcony to sit on as I showered. Even if I didn't have dodgy legs I think this is something I may bare in mind in future as the bathroom wasn't completely drowned. Soggy toilet paper is not good. Just make sure that your flip flops are handy so you don't slip and break your leg on the way out. Think of the embarrassment. 


During the week I also had a Hamman (Turkish bath) and an aromatherapy massage, which was heaven, for anyone who hasn't had a Hamman they are devine, they cover you in bubbles after exfoliating your skin and it feels like being inside a malteaser. I didn't even have to walk there as we got a transfer, although unfortunately there was quite a few steps in the building itself. Mum and I got taken to the private Hamman where these two male masseurs came in haha. It made me giggle. Unfortunately they weren't that good looking though and mine did smell a bit but him and the girl that did my aromatherapy massage and facial must have had the magic touch because the next day I felt well enough to walk the 100 meters to the supermarket and back. Mind you it could have been the call of a new handbag and Haribo sweets. The next day my legs were aching again although whether this was because of the walk or what sadly seems to be becoming normal I'm not sure. But you have to do things when you can and it had felt good at the time, especially with my gorgeous new bag in tow. 


Whilst away I also rang up Ryanair special assistance helpline to order a wheelchair for the return journey and again found them to be very helpful and polite. All I had to do was reprint my boarding pass, which they had added a note for special assistance on. How can this be? I hear some people cry. Well printers are available all over the world, especially in hotels and asking at reception to borrow theirs or for directions to the nearest internet cafe is far better than incurring a £70 fine (which is clearly stated in their rules Mr Bryan McFadden!)    Plus when you need a chair the less hassle you can avoid the better. When I got to the airport there was a chair by the door  so I hopped in, well fell in. Apparently this wasn't the right type of chair though so I had to wait for another. No I don't understand either! Apparently what you need to do is push in at the front of the queue annoying everyone else and getting lots of dirty looks and then they will send someone to bring the 'proper' chair for you. Don't quote me on that though, but this other woman was waiting forever at the reception desk and not getting very far and this is what one of the security guards had told me to do (another friend from the hotel.) Maybe if you don't want to look rude or face the wrath of people you are going to be couped up with for the next 4 hours it's best to sit down and wait as they were only checking each flight individually. I can't say that this was a fault with Ryanair though, I think it's just the different system for people with disabilities abroad, they don't have as many regulations as we do in the country of political correctness.


So what is in store now, who knows? I'm back to the doctors later this afternoon to see if there's anything more that can be done about my legs. The plane journey probably didn't help but it's always good to get away and as long as you're surrounded by people that understand and can take care of you then there are provisions out there to help you get away and enjoy a somewhat 'normal' time. For more information on travelling with a disability or special assistance take a look at the airlines webpages and search for special assistance.