Saturday, 31 August 2013

Things I learnt at clinic: Healthy eating

Before I begin this post let me just be boring and say that all the inforamtion that I use in this post was gleaned from a registered dietitian at ME clinic and from the NHS's website. I am in no way telling you how to diet. This post isn't about losing weight it's about trying to eat healthily. If you have any issues with your weight or diet then I recommend that you discuss them with your GP or a registered dietitian, who can help you make the right choices for you. Okay, resuming business.

Eating healthily is big business nowadays and please note that I say eating healthily and not dieting. Although the dieting industry is absolutely huge (forgive that awful pun). Of course some diets do not abide by the rules of healthy eating and can sometimes do more damage than good to your body. Or cause you to gain weight as soon as you start to eat normally again, which actually is worse for us as what we gain back is more fat and not the muscle mass that we have lost by dieting. So unless you need to be on a specific medical diet for some health reason or for weight loss surgury the answer lies in healthy eating. Of course there is excersise too, which is really important but that just doesn't come into some of our radars with a chronic illness.

Of course eating as healthily as possible is something that we are all aware of and know that we should do, whether we adhere to it or not. To use that old similie that is because food to a human being is like pertol to a car. Therefore the better quality the food that we put into our systems, the better performance we will get from our engines. So you can see straight away how this can have an affect on someone with ME. Because we constantly feel like we are running on empty it is important that we utilise food to help us get through the day and to help our bodily systems. Our calorie intake should be determined by our level of activity. Therefore the more we do the more calories we need to support this. Take cyclists who ride the Tour de France for example, they eat between 6000 and 9000 calories a day to allow them to complete the race. Just one stage (day) can burn 4500 calories as well as the 1500- 2000 calories that a body needs to function properly. This is according to www.bicycling.com. Again think about a car if you only have enough petrol/ diesel for 30 miles but you try and do 50 then it is going to break down. Obviously for people with chronic illnesses the amount of activity that we do can be very little but we still need to take on enough calories to support all our bodily systems and give us a boost on our low stamina levels.

So how can we eat healthily? Or what is considered a healthy diet? It's something that we hear all the time but the only thing that we commonly associate with healthy eating is salad. According the NHS's eatwell plate http://www.nhs.uk/Livewell/Goodfood/Pages/eatwell-plate.aspx our diet's should consist of one third starchy foods, such as potatoes, pasta and rice. Starchy foods or carbohydrates are energy giving foods, that also provide fibre and vitamins. Many people consider carbohydrates bad but they don't have much fat content and for an even more healthy choice there are many wholegrain options. Carbohydrates with low GI (glyceamic index) numbers can be beneficial for people with ME, as they release energy slowly and therefore are better for stamina than foods that have a quick burst of energy that could leave you feeling more tired. These include porridge, sweet potatoes and wholemeal or granary bread.

Another third of your diet should be made up of fruit and vegetables. Remember the 5 a day rule. Remember though this can include juices and soups, just make sure that you check it is not concentrated or flavoured to ensure that you are getting those nutrients down your neck. Fruit and vegetables are a good source of energy, vitamins, fibre and good sugars. Many fruit and vegetables are also good sources of anti-oxidants and can be good for boosting our immune systems, which can be useful for us ME sufferers, with us tending to pick up any bug making its rounds. What I will say though is that I know many people with ME can also suffer with IBS (post to come shortly) which can be aggravated by acidic fruits so if this is the case for you try to look more to non acidic fruits such as bananas, which are also a great source of energy. Also be careful of vegetables such as peppers and brocolli, which can also cause irritation. So for a good energy boost why not try a slow release carbohydrate such as porridge or a non sugary cereal with fruit to start the day off and improve that early morning dip in blood sugar and energy levels.

The last third of our diets should consist of protein, dairy and a small percentage of fats. Proteins include meat, fish, egg and beans and can be a valuable source of energy and provide lots of vtamins and minerals. When eating meat it is best to choose as much non processed meat as possibe and of course be aware of the amount of saturated fat content that the meat has. The leaner the meat the better. White meat is generally considered best for our health but red meat is also a valuable source of protein, providing us with iron and vitamin b12, which are good for helping combat fatigue which of course can be important to a person with ME. How often do you crave red meat when you are feeling exhausted or ladies on that oh so wonderful (spare me) time of the month?  So do not shy away from red meat, unless of course you are a vegetarian, you can avoid some cholestrol problems by eating quality meat and of course by cooking it in a more healthy way, such as grilling. Fish of course is well known as a healthy option, especially oily fish, such as mackeral, salmon or tuna (although tinned tuna contains much less omega 3). Oily fish is a good source of omega 3 fatty acids that are good for the heart and for energy levels. On average people should aim to have 2 portions of fish a week, one of which being an oily fish. Please see this link for more information on oily fish guidelines http://www.nhs.uk/Livewell/Goodfood/Pages/fish-shellfish.aspx Other sources of protein include eggs and beans. Eggs are a good food for those of us with ME, as they are quick to make and also have lots of vitamins such as vitamin A. There's no limit on the amount of eggs that you can eat a week but be aware that they contain cholestrol so take caution if you already have high cholestrol.

As for beans and pulses, they are very often forgotten about, other than the trusty baked bean of course, a can of which also counts as one of your five fruit and veg a day. Whoopee (cushion ;-)) Baked beans yet again are good for those of us with ME as again they are quick to prepare as well as nutritious of course. Try and combine them with wholgrain or granary bread, to maximise the nutrients because you are having a slow relase carbohydrate, protein and one of your 5 portions of fruit and veg a day. As for other beans and pulses they can be dried, which you have to soak over night, which could be bothersome but you can also get many in a tin. These include peas, chickpeas, kidney beans and butter beans. Try adding them into soups or stews or into sauces as an extra source of protein. Pulses are great for vegetarians as it gives them their source of protein. They are also a great source of iron and fibre.

Dairy is also an important source of protein and of course calcium, to help bone strengh and growth. Dairy products can vary in fat content, but there are plenty of low fat options to help you get the vitamins and calcium needed but in a more healthy way. Finally a small percentage of our diet should be made up of fats and sugary foods. Again the less saturated fat that we consume the better but some fats in moderation are needed by our bodies. Fat can help our bodies to absorb nutrients but also is a source of energy. Obviously if you are looking to lose weight then this is the first area that someone should look to cut down on, especially those saturated fats.

Many people now claim to have an intolerance or be allergic to some foods but statistics show that actually they are not as common as believed. What may be happening is that some people might be intolerant to the way some products are processed and not the whole food group. So for example with dairy products, many people may have a bad reaction to drinking milk a few times and then cut out all dairy products from their diets, which can be detrimental to their health. They may in fact be intolerant to the way that the milk is processed or even a certain brand. I have this problem with milk and have learnt that I can tolerate it in small quantities such as in tea but not in larger quantities. Therefore I get my calcium intake by having soya milk. As for other dairy products I don't have any problems with. Well apart from ice cream but that seems to have improved as of late. Oh it has been such hard work trailing that! I do sometimes find though that I am better with cheaper brands than more expensive ones, so again it could be an issue with the way it is made. Cutting out a food group entirely can really affect your body and if you have any suspicions about allergies or intolerances a doctor and/ or dietitian should always be consulted to monitor your health and responses. I know a few people with ME and Fibromyalgia try gluten free diets with varying responses in improved energy levels but again always check with a doctor and make sure you are monitored throughout. Most doctors and dietitians will also be able to guide you on starting to reintroduce certain foods from that food group to be able pinpoint where exactly the intolerance stems from. This way you can avoid the foods that make you ill but still get the health and dietary needs from eating that food group. Not sure where ice cream places there.

A good 'diet' should provide all the vitamins and nutrients that our bodies need and should always be the first port of call if you discover that you have a deficiency in any vitamins and minerals. However sometimes supplements may be needed to help boost our levels and support our immune systems. What I will say is to do this through your doctor or dietitian who have a clearer picture of your overall health and any medications that you are taking that could be affected by taking supplements. Or vice- versa depending on what ingredients your medication contains. For example many gastro resistant or antacid tablets can affect the absorbsion of other medications because they contain magnesium and therefore need to be taken at seperate times. Also taking on too many nutrients can also be detrimental to our health, so it is really important that your doctor can monitor your levels regularly and that you declare any supplements that you are taking to your doctor.

As I mentioned earlier foods that have high levels of anti-oxidants can be good for supporting our immune systems and help keep nasty bugs or infections away. Because let's face it having something else do deal with is never great and can lead to flares or even worsen our health for some time. Yes I'm talking about you nasty chest infection! According to www.bbcgoodfood.com the top ten immune system boosting foods are blueberries, carrots, lettuce and salad greens, beetroot, Brazil nuts, grapefruit, garlic, cranberries and ginger. So you may want to regularly include them in your diet.

Other tips that I learnt for trying to boost energy and stamina levels as much as possible include to always eat breakfast. How many sayings are there about the value of eating breakfast? And it's true. Think about it, supposedly you have been sleeping all night, (you can see why I say supposedly) therefore when we wake up our blood sugars are at a low and we are in need of sustenance to be able to get through the day. Again if you can combine a slow release carbohydrate here with fruit or a protein then you are giving yourself some good nutrients to maintain good energy levels. So for example, porridge with blueberries or wholegrain toast and an egg or beans. As well as food, being aware of what we drink is also really important because dehydration is detrimental to fatigue levels. So make sure that you are drinking plenty of water. Be wary of fizzy drinks because the sugar content can again give you a rush of energy that can lead to more fatigue and may also contain caffine. Caffine intake should be avoided after around 4pm to help you to fall asleep. Many people with ME have problems drinking alcohol and tend to avoid it but be aware that it is often a hidden source of calories and can actually cause the body to become more dehydrated, causing fatigue. Lastly make sure that you eat regularly to maintain energy levels. The dietitian at clinic recommended eating every 4 hours as this coincided with the bodies natural dips in energy, apart from over night of course.

So I have talked about what we need to be eating in order to keep as healthy as possible. However I do realise that when you have a chronic illness that eating healthily can sometimes be difficult. If you are a  sleepy bunny like myself then eating three meals a day can prove difficult, let alone every 4 hours. Then of course there are the practicalities, such as having the energy to shop for and prepare food. But that is all for another post, where I'll discuss more about these practicalities. If you have any tips that you think will be helpful for how to make life easier with the practicalites of shopping and preparing food then please post a comment. Hope you have found this post helpful.

Sunday, 25 August 2013

Groundhog day

Last Sunday I was supposed to go to the Christening of my friends son but unfortunately I couldn't go, I could barely get out of bed. Obviously being all too familiar with the ways of ME and fibromyalgia I always knew that there woud be a chance of not being able to go but I had put all the plans in place so that I could go if I was well enough. The military operation that is going anywhere with ME. It' much like going out with a baby, where you need a bag like Mary Poppins's. I had asked about whether I could get my wheelchair into the church and the venue and had asked whether my Mum could come as well to help me get around and that way I could leave easily if I got too tired or was in too much pain and of course not have to ask someone else to wheel me to the bathroom. As well as the list of things that I would need to take with me, the small pharmacy and extra clothes in case my tempreture dropped and baby wipes in case I started sweating. Anyhow it wasn't to be, which wasn't too much of a surprise knowing ME as I do.

However ever since I have been feeling rather deflated. It seems to have signalled a change in my attitude somehow. A sort of begruding acceptance of the things that I will miss out on in future. A psychologist would call it catostrophizing. When you are looking to the future and becoming anxious at what life will hold and only seeing the bad, an extension of the way you are feeling now for the forseeable future. I guess that that is what I am feeling. I'm just caught in a rut I think and it's quite scary. I can only see the long long road ahead of nothingness. Of a life where the most exciting thing that happens that's not in a book, on tv or in a film, is to make it downstairs. With the monotony of wearing pyjamas and taking tablet after tablet after tablet. So as you can see I haven't been in the best of moods this week, even breaking into tears at one point with the overwhelming thoughts about the longevity of this illness.

I know that the condition can have it's ups and downs, times when you will feel better than others and flares where you can do very little but there is never a day where you feel normal, that you can somehow forget that you have ME or Fibro. And that is having an effect on me. It feels like a huge weight to bear, almost too much. Non of this is me. I am an ambitious young woman, who wants so much more out of life. I want to be social and to do more travelling and exploring. Earn my own money and just generally be more independent. Basically I want to feel like I have the chance of living the life that a woman in her twenties should be. Maybe not exactly as it was in the past or the direction that my life was heading in but at least a life where everything doesn't revolve around ME and Fibro and only knowing the time by what medication you're taking.

It's so difficult to think that this is what life could be like for the forseeable. I know that I shouldn't think like that it's not productive but it can be very hard not too. Especially when things seem to be getting worse, with the fibromyalgia diagnosis as well now. There is always the social aspect as well, as I have said before society will only allow you to be ill for so long before it moves along. When you have ME you don't get get well soon or thinking of you cards, not even if you have to hospitalized. Or people will say "when you get yourself sorted we'll get out." Well in that case we're all going to be waiting a long time. Or they expect you to go to them, which is yet more military style planning and the use of many more spoons. Somehow you and ME become entwined and it becomes you and you become it. And I hate that! I am tired of feeling more ME ( as in the condition) than myself.

But it's not just about the effect it's having on my life. My family are in this with me too, especially my parents. Whilst this truely is a blessing and I feel incredibley lucky to have parents like mine I also hate what I'm putting them through. At times it is like having a baby in the house I need so much care at times and I feel bad for needing them as I do. For impacting the way they live their lives and them needing to be more orientated around me.

I don't know I'm just in a rut at the moment. The fact that there is very little let up from the symptoms and social impacts of the condition and no known end in sight. I'm sure this a common feeling for many sufferers and hopefully soon I shall be back to just trying to live from moment to moment and making the most of them.

Anyone out there have any advise? Or feel the same?  Hope I haven't depressed you all.

Wednesday, 21 August 2013

Being a pyjama clad woman

Warning in this post I am going to talk about ladies things, notably boobs and bras, so any males out there may want to avert their eyes if they wish. Or if you are a male family member then you probably should go watch the cricket or something.

Living with a chronic illness and chronic pain you can spend a lot of time in your pyjamas. Well unless you've got the sweats and need to change them several times a day. But generally it is just easier/ more comfortable to remain in your pyjamas and save a 'spoon' for something else. Yes I admit that sometimes I have even visited family in my pyjamas but I draw the line at going out in 'public' as in to the shops in them. That's a little too far. Although I have seen many a  person do so. Anyhow somewhere back in the dawn of time I remember being told, or heard somewhere that you should never wear a bra to bed, because it's bad for your breasts and can stop them from growing. Well that could explain some things, hehe. Now I have no idea whether this information is true but let's say I followed it anyhow. Plus lets face it wearing bras in bed can be quite uncomfortable and lead to all kinds of weird lines and sweatiness, uch! But obviously when you are in bed quite a lot through illness, as I have been recently you get to debating the whole bra in bed issue. As well as the bra with pyjamas issue. Mostly I have been thinking about whether I should be wearing a bra during waking hours.

On a facebook page that I follow www.facebook.com/largecupbras which is a lingerie company and has reviews and blog posts of different bras etc this week the issue was raised on there too, through an article on Huffington Post. Well mainly concerning whether to wear a bra in bed. They wondered whether actually by not wearing a bra in bed the delicate breast tissues were getting too stretched, especially for busty ladies and ladies that have more bulk on the sides of their boobs (you know when you're pulling them out from under your armpits). There is even a story from Amy Greene, Marilyn Monroe's closest friend that she infact did not just wear Chanel No 5 to bed, but in her words 'a bra like they had in the convents', all because she was told that her breasts would sag if she didn't wear a bra to bed and in turn ruin her career. In the article on Huffington Post as part of their beauty myths series they talked to a professional bra fitter and an associate professor of surgery and director of the Breast Cancer Surgery Multidisciplinary Fellowship at New York University. Of course the big question was 'does wearing a bra at night cause breast cancer?' To which evidence shows that no it cannot contribute but if you are wearing a tight or uncomfortable bra then it COULD give you cysts in the breast tissue. So common sense applies, make sure your puppies are comfortable, supported but that they can breathe and aren't cutting into the breast tissue. This goes for boobs of all sizes and whether you wear a bra at night or not.

But as for whether wearing a bra at night is actually good or bad for us is still up for debate. Yes it won't give you breast cancer so that is a pro. Both the surgeon and bra fitter said that it does all come down to comfort and preferance at the end of the day. As long as your breasts are supported during the day and you wear a properly fitted bra then the 8 hours or so you are asleep shouldn't make too much of a difference or make them sag prematurely. I said 8 hours sleep, meaning for the healthy amongst us obviously. However ensuring we are supporting our breasts during the day is all important. Wearing a well fitted bra is essential, honestly I can go on and on about this. Not only can it do wonders for your cleavage and your posture but it can also help reduce back pain and is recommended by chirocpractors and physiotherapists. I remember going to a physio after a car accident and was mortified that I forgot to take the tag off a new bra as I was 'road testing' it but they actually applauded me on it's good fit and make and then kindly cut the label off for me. Good fitting bras can literally do wonders on your health, figure and self confidence. So make sure you get fitted properly and regularly if you notice any changes in your weight. Also get to know how different brands and types of bra will suit your shape better but it may mean that you need a different size from the different brands and types, so if you can try before you buy. But once you get to know how a bra should look/fit then you can make good choices. For busty ladies I thoroughly reccomend getting a fitting at Bravissimo. I think they really revolutionized lingerie for larger cup sizes and getting there customers to understand their boobs more. It is also the company that the physiotherapist recommended. Thankfully long gone are the days when larger busted ladies had very little choice in styles.

Back to the article though, they did say though never to sleep in an underwired bra, because of the discomfort and added pressure on the breast tissue. The professional bra fitter also said that if you are over a D cup then she would actually recommend sleeping in a bra because of the extra weight and impact of gravity and to keep them in place so you don't end up sleeping on them (the last bit are my own words). But the conclusion is that is all about comfort and preference (and of course who you're sharing a bed with ;-) ).

Of course this discussion was based on healthy women, who get that magic number 8 hours sleep and then get up and get dressed into their bras and whatever else, not those of us with chronic illnesses who's sleep varies, are in bed for a lot more time than they are out of it and most probably if they do get changed it will be into another set of pyjamas. Of course we could always just pop on a bra when we are awake and then take it off before going back to sleep, which I have tried but with finding myself spending more and more time in bed lately I thought I should really give some more thought into this boob dilemma. I should really have thought about it sooner given my vigilence in finding good fitting bras.  I did try just sticking to my regular underwired bra all day long but it is uncomfortable, even with a good fitting bra. So I started looking into soft cup bras. Thinking that the only choices would be sports bras or a Granny bra, or that they wouldn't have any in my size. I feared that there may just be ones that were in general Small, Medium or Large sizes, more like a crop top. I didn't want to compromise on the size, because as I said I am a big advocate of a proper fitting bra and that would defeat the purpose of needing a bra for support.

So after some searching on all my usual sites, and trust me there are many the only options that seemed to be available in my size was a sports bra or a maternity/ nursing bra. I decided to try the maternity bra as they were lighter weight. This was a bit strange for me but I thought what the heck I'll give it a go as there isn't much else available, it ticks all the other boxes and I can always give my self a cheeky flash if I get bored haha. Well I could if I could navigate the drop cup clip. So once I knew what I was looking for and average price range I thought I'd try my luck on ebay, well you just don't know your luck and when you are looking at £30 a bra it's always worth looking around. Miraculously I managed to get 2 different bras for under £25.

I have the Freya Dotty one and a Royce one. The Freya one is fantastic, it is so comfortable I can wear it all day and night and there's no marks. I am a fan of Freya lingerie and swimwear already and am equally impressed with this bra. And because it is in my actual size the support is great, especially on the sides of the bra. Hurrah no longer are my boobs typing their own words on my tablet! The Royce one is pretty and supportive but it's a bit tight and therefore uncomfortable so I haven't been wearing it to sleep. It also doesn't give as nice a sillouette but that's not all that important under pyjamas. I'd never even heard of Royce before so don't know whether their sizing in general is slightly smaller. Plus I'm sure it will stretch soon.

So there you have it a comfy solution to lounging around and spending a lot of time in pyjamas. Without the worry of damaging or stretching any tissue because of the length of time that you might not be wearing a bra. Again it all depends on size and comfort though but personally I'm glad that I have found a great solution for night and day (well night and day in ME world, so maybe that should be awake and asleep.) So perhaps if you're in a similar situation then you might want to give it a thought. Who knows it could help with some back pain.

But whatever your situation look after your boobies ladies.

Some of my favourite websites for lingerie and swimwear are:

www.bravissimo.com
www.figleaves.com
www.bouxavenue.com
www.largecuplingerie.com
www.brastop.com

Tuesday, 13 August 2013

What is Fibromyalgia?

A diagram of the tender points apparent in Fibromyalgia from Arthritis Research UK

Now I know a lot of you will know exactly what Fibromyalgia is, unfortuntely, and I mean unfortunately if you are suffering from it- because then you know all too well what the condition entails. But in the purposes of education and in light of my recent 'diagnosis' I thought I'd write a post on it, as I promised I would. If anything it will help to educate me too and the more answers and information that I have the more that I can help myself. Remember knowledge is power.

Fibromyalgia can be commonly referred to as FM. So as I said in my post 'the rheumatologist appointment' some doctors and clinicians will class fibromyalgia in the same 'umbrella' as ME. But I would say that is only really possible if you already have ME, because established ME can lead to a diagnosis of fibromyalgia (more to be said on that later). However it is possible to have fibromyalgia on it's own.In fact fibromyalgia is thought to to be quite common. According to Arthritis Research UK that figure could be as high as 1 in every 25 people may be affected. Quite a shocking figure really. Surpassing figures for rheumatoid arthritis and it can be just as painful if not more so. But at the same time I fear that with such a high figure it could trivialise the condition somewhat. In terms of coming across many people that would say "Oh I have fibromyalgia and I just get on with it" type situations, as I'm sure many people have come across. However there is of course varying degrees of the severity of the condition and of some of the other symptoms that can be associated with the condition.


So let me actually answer the question 'what is fibromyalgia?' Well answer it as much as it can be answered. Fibromyalgia is a condition that effects the muscles, tendons and ligaments, causing widespread pain. In order for it to be diagnosed you need to have been experiencing the pain 'long term,' ruling out any injuries etc where the muscles should have repaired themselves. Thus rendering it a chronic condition. The Fibromyalgia Association UK describes the composite of the name fibromyalgia as '"fibro" for fibrous tissues such as tendons and ligaments "my" indicating muscles and "algia" meaning pain.' So quite self explanatory really. Fibromyalgia is also recognized as a syndrome which again the Fibromyalgia Association define as 'a collection of symptoms rather than one specific symptom or malfunction.' This can also make conditons hard to treat as there are many things to take into consideration. 


Fibromyalgia can also be recognised by pain in certain tender points that can be seen on the photo at the top of this post. These areas can be extremely tender to the touch, even gently as I think I have conveyed clearly in many a whiney post and is the reason I am writing this post on my phone, because I can't handle the weight of my tablet on my legs. Someone with fibromyalgia will usually have 11 or more tender points. The pain will vary in severity from time to time but can be described as an aching pain or a burning sensation. Often it can feel like having sunburn. I quite often feel like my muscles are pulling away from my bones, which is probably a sign of the tension in the muscles. The pain can prevent sleep and can cause nausea.


Although pain is the key symptom of the condition as I said it is a syndrome so there are other symptoms that again vary according to each patient. Namely fatigue but other symptoms as well as pain of course include:

*sensitivity to touch

*sensitivity to hot and cold

*sleep disturbances

*poor circulation

*sweating

*swellings

*tingling 

*headaches

*low mood

*forgetfullness and poor concentration

*irratible bowel syndrome

Just to name a few but there can be plenty more. So fibromyalgia can be diagnosed by the long term presence of pain, especially in the tender points and the existence of other symptoms and then of course ruling out other conditions such as rheumatoid arthritis, MS or a vitamin defiency. A blood test for muscle damage and wastage as well as to look for any inflammation is usually the first port of call. This is because research has shown that fibromyalgia is not a degenerative (where the muscles waste) or inflammatory condition. This also means to use a highly annoying phrase 'that there is no physical reason for the pain'. As I explained before the pain felt through fibromyalgia is a hypersenitivity in the way our brains process pain signals. So for example feeling in agony by doing something that should not hurt.    But of course that doesn't mean that it's all in our heads the pain is still very real and should be treated as such. In particular using drugs that will help hypersensitivity and how the brain is processesing the pain signals.


As I mentioned in the post 'the rheumatologist appointment' fibromyalgia can be caused by a sleep disturbance and thus not getting enough restorative sleep. Leaving our muscles unrefreshed and the reason for all over fatigue too in fibromyalgia sufferers. Therefore the treatment for fibromyalgia is often sought in helping the patient get better sleep. Through medicines such as amitriptiline and also lifestyle changes like establishing a sleep routine. More information on trying to aid better sleep can be found in my post 'things I learnt at clinic: physiology and sleep.'


In the booklet that I recieved from the rheumatologist it tells of an 'experiment where healthy volunteers were woken during each period of deep sleep, a number of them developed the typical signs and symptoms of fibromyalgia." Demonstrating clearly the connection between sleep disturbance and fibromyalgia but also the importance of sleep on our overall health. However as these were healthy candidates their symptoms soon eased once there sleep pattern went back to normal. But because many people with fibromyalgia also have other health issues such as ME, that can play havoc with sleep patterns, or a long standing sleep disturbance that has gone undetected and untreated our bodies won't heal as fast. Or without getting the quality of sleep needed to help the body heal and treat the other symptoms. But other causes are thought to be after a viral infection, physical or mental trauma such as a car accident or bereavement, or following a long period of stress and anxiety.


So some treatments that are available for fibromyalgia sufferers are:
*pain killers
* drugs to help with pain and sleep
* antidepressants to help with anxiety or depression which could again could cause sleep disturbances
* Medication like gabapentin, which affects the pain signals

Other than medicines though there is:
* physiotherapy
* occupational therapy
* gentle excercise (note I say gentle! But again depending on the severity of symptoms in each individual)
* healthy eating
*mindfulness
*a good sleep routine

As well as complimentary therapies such as:
*massage
*aromatherapy
* accupuncture
* reflexology

Find something that works for you and helps improve your pain levels. Remember what works for one person may not work for another but hopefully there is something for everyone. It is just that fibromyalgia varies between sufferers. And like I have said before don't be afraid to visit your doctor frequently and to find a doctor that will work with you and is easy to talk to. Make sure they have the full picture in order to give you the best treatment for you. 


So there you have it some information on fibromyalgia. I hope that it has been informative. Below are some websites for further information.

Www.fibromyalgia-association.org
Www.fibro-wales.com
Www.fibroaction.org
Www.arthritisresearchuk.org

Sunday, 11 August 2013

Things I learnt in clinic: Mindfulness

One of the first things that we did at clinic was learn about mindfulness. It is a technique that can be used by anyone regardless of the state of their health and is a way of focusing the mind and taking time out to refresh and relax. Similar to meditation. In fact in draws upon many meditative qualities. Lately it has been hailed as a great technique for mental health improvement especially with conditions such as depression and anxiety as it can help calm the mind. In fact it was a featured technique on that programme on BBC 3  Failed by the NHS. In fact they are trying to get mindfulness courses free for those that would benefit the most.

So what exactly is mindfulness? According to www.bemindfulonline.co.uk it is ' a mind-body approach to life that helps people relate differently to experiences. It involves paying attention to thoughts, feelings and body sensations in a way that increases our ability to manage difficult experiences and make wise choices.' It can be a combination of two different types Mindful Based Stress Reduction and Mindul Based Cognitive Behavioural Therapy. The first MBSR, relates to reducing stress in ones life and therefore being able to think more clearly, which can be useful for conditions such as anxiety. And the latter, MBCBT is a technique that involves changing the way you think about certain situations, to be more in the moment rather than having your thoughts race. They also say that mindfulness 'enables us to be aware of our thoughts and emotions so we can make wise choices and respond better to different situations.' And in turn make us more aware of our bodies, which can 'even help people cope with chronic pain.'

Well that last quote sounds really good. But what mindfulness does is allow you to relax and slow down. To have some time just for you. So as I said my first experience with mindfulness was on my first group visit to the ME clinic. I had heard of CBT before with having councelling but never really put it actively into practise. Or so I thought until I have done some research into mindfulness and noticed how perhaps I had been using it but had never associated it with relaxation.

So how was it introduced? We were all asked to sit comfortabley but with our feet firmly on the ground. Then to close our eyes and to do some deep breathing. Breathing in for a count of 7 and breathing out for a count of 11. By breathing out for longer it helps the body to relax faster. Then after we had taken a few breaths we were asked to just zone in and concentrate on our breathing. Noticing the minutae of the process. The sound as we inhaled the air through our noses, whether we moved certain parts of our bodies as we inhaled and what the movement was. The sensation of our diaphrams expanding as the air filled our lungs and as it then detracts as we breathe out. As the excerise went on we were told to notice whether our concentration was lapsing at all, as in away from focusing on our breath and if it was to notice what it was our attention had been drawn by. Then to try and take our attention back to our breathing each time our attention wandered off.

In total we did this for 5 minutes on that first session and built on it in the following sessions. After the excercise we were asked about how we found it and whether we did find our focus wandering away from our breathing. Personally I found it difficult to begin with. As did many of the others. I found it difficult to relax as it was an alien concept back then and I also felt quite self-conscious with doing it in a group (somehow you feel like you are the only one and everyone else is watching or have left the room.) These were the main things that took my focus away from my breathing but when I did get into the mindfulness I did feel very relaxed in fact I was trying not to fall asleep. Oops!

But falling asleep is in contradiction with the aims of mindfulness. But at first it happens to many people, especially if you are not used to relaxing. It is a natural reaction to your body and mind calming down and if you are not used to it then it can make you feel sleepy. Because what mindfulness is supposed to do is to ger you more in tune with your body and mind. To understand more about your thought processes or how we use our bodies. For example focusing on what our bodies do when we are breathing. Therefore rather than using it to aid sleep it is more of a relaxation tool that also helps us become more aware. As I said to give us 5 minutes or more to ourselves. To help us think more clearly and focus on the next task that we undertake and forget about what we had been doing. Or even worries about past or future problems and anxieties. To just be in the moment. We were told that using this technique between tasks/activities that it would help us to be more present and in turn use less 'effort' (see post 'things I learnt at clinic: diaries) or spoons.

Building on from this you can start off in the same vain, focusing on your breathing, and then start assessing each part of the body. Focusing on only that body part. Noticing whether there is any pain or tension there? And if there was to keep with that thought, focusing on the pain and noticing how the more focus is placed on it the more intense it became. But the aim is to keep focusing as much as possible on it until we noticed our attention drifting, as it is want to do, and with this how the pain generally plateaud and faded.

I had done a similar excercise at university, using some of Stanislavski's methodology on acting to become aware of the body and how we use it and also to fully relax it before transforming into a different character. A character that would use their body in a totally different way. One difference though was that as we focused on each body part we would also need to tense it and then let it go to relax the muscles more.

Another mindfulness technique is that of 'active mindfulness', which draws upon some of the CBT techniques. As you might have guessed this is a more 'active' exercise but no it does not require a gym membership. It simply means using some of the techniques in your everyday life. One that comes to mind from when I was learning about CBT is to not just have a shower but to 'feel' the shower. Oh dear how pretencious did that sound? Notice the minutae of what it is you're doing. Notice what the water feels like. The smell of your shampoo and shower gel. How it feels on your hair and skin. Be 'present'.

How often have you had a shower and been thinking of other things? Being late for work, your outfit for the day? So many things that you probably don't heed much attention to showering. Unless it suddenly goes boiling hot or freezing cold. This is because it is so much a part of our routine that it is locked in our muscle memory. Meaning we can do certain things without really giving them much thought. The same could be said for driving, especially on a trip that you do often, your daily commute for example. It is only when you go somewhere new or have a passenger in the car when you are not used to it that you really pay attention to what you do when you drive, otherwise our minds are usually elsewhere or singing along to our favourite driving tunes.

So what can be done is just being more present in different situations and activities. For example if you are out for a walk or a wheel on a nice day, notice the sun on your skin, where do you feel it the most? Notice the sounds of the birds, the things and people that you pass. If you are walking, how are you walking? Does your heel or the ball of your foot hit the floor first? Am I sounding hippyish yet? As I said it's just thinking about the minutae that we do without really 'thinking' about it. Or it could be said that it is stopping and appreciating the world around us.

I can see how this would be a great technique for those with anxiety related disorders as it would help to focus the mind and try to calm any worries or fears that are provoking the anxiety. Not letting it all build up into mega panic attack levels. Obviously this all depends on the level of exposure, someone with severe social anxiety may take a while to practise the technique and for them to use it successfully in a social situation. I remember when I used to go out when I suffered from anxiety and by trying to slow down and focus more on what was going on around me or on my breathing did help. In that programme 'Failed by the NHS' some of the patients with anxiey and OCD found mindfulness helpful as it gave them a break from dwelling on their anxieties or thinking about ritualizing.

As for those of us with ME then I think the relaxation is very useful. It's also a good thing to do between tasks, depending on what the tasks are. If you are in bed and going from surfing the internet to reading then not so much. However if you have done something like organizing your wardrobe and then want to do something quieter like watching tv then it's worth a try. You will be better equipt to focus on the tv programme without your mind wandering off too much and you using up more spoons or effort as your mind is on other things as well.  We were asked to at least implement it once a day, more if possible, depending on the activities we were doing. Say for example if you were working then it would be good to try during your break. As for active mindfulness I think it can be helpful. We already need to break things into smaller chunks as it is to think about our stamina levels. But by thinking more deeply about experiencing them it can save some brain focus too. Plus by focusing more on doing something it can help with the brain fog as you are more likely to remember doing something. I should try this more with taking my tablets. I write it all down but as taking them has become second nature I can never remember actually taking them.

I have to say that it is useful in this vain and can actually be more refreshing than a short nap. Make sure that you have somewhere quiet to practise and if you don't live alone maybe tell othets that you don't want to be disturbed for 10 mintues. It can be hard to get into at first, especially with no one guiding you through it but once you get the hang of it you can use it anytime, anywhere you like. Try not to force your thoughts though or get annoyed if you do find your mind getting sidetracked during the excercise because that only winds you up, defeating the purpose of it. Our minds wandering is perfectly natural, especially if we are drawn by sounds or smells as that again is our fight or flight instinct kicking in.There is an online course available at the be mindful website (see link above) and also courses that you can attend. As well as books or audio sources available.

I don't practise it as much at the moment but that's because life is at a much slower pace but if I'm feeling stressed out then I will use it. Hopefully when I'm out of this flare and slightly more active again I'll be able to use it some more, when I remember that is! I think it's a useful technique for anyone. It is good to have 5 or more minutes just to reset and relax. Maybe try it after getting home from work, to set a clear distinction between work and home. Leave work thoughts at work as much as possible. Especially if you are on the go a lot and feel like your feet don't touch the ground. I wish I'd have known about it back when the only down time I had was sleeping. So give it a go and see what you think.

The rheumatologist appointment

So I'm sure you've all been on tenter hooks wanting to know how I got on at my rheumatology appointment, so I will put you out of your miseries. Hehe. Sorry it's taken a while my brain has been away on holidays since the appointment, it still won't tell me where. So I'm a big foggy. I have just had the coldest cup of tea ever because I completely forgot about it and it was right beside me. So I will try my best to re-tell the tale.

First of all it was quite the mamouth effort to get there. Remember for more than a week before hand my only adventures had been to the bathroom and a couple of trips downstairs if I was lucky. So getting out of the house and then actually going somewhere was quite the effort. But in good ME patient style I made sure that I took it in small chunks. Starting with having a wash (well baby wipe wash, I didn't have that much energy to spare, all hail baby wipes) and getting dressed, with help and I made it as simple as possible by just slipping on a maxi dress. Then I rested for a bit before going downstairs doing the bum shuffle technique and then rested again downstairs for an hour before getting into the car. The car ride was only 10 minutes but it was really painful and felt like it was a lot longer. Just getting into the car was a struggle with the limited space to swing your legs and with winging my legs being a problem anyway. Maybe next time I could try my gravity technique and hope I can get myself back up into a sitting position.

But we got there in one piece and I was wheeled by Mother dearest into the hospital. Firstly I needed to have all my bits and pieces checked like my weight and height and blood pressure and the nurse doing this was really helpful in supporting me. They also checked my wee, because of course you cannot set foot into a hospital without doing a wee sample an them taking blood (more on that later). Anyhow they said that it was showing signs of infection, which was a bit of a surprise to me but when I thought about it my lower back had been hurting more and I was rather feverishly sweaty. But of course sometimes you just think that these are 'normal' and put them down to ME, which can often be a big mistake. But here's the thing after getting a bit paranoid about it (yes Mikey paranoid) and then of course you start 'noticing' certain symptoms more I decided to take another sample up to my GP's to get some antibiotics before it got nasty and I was left with yet more ugliness to deal with and then recover from. Anyway the nurse check it and miraculously there were no signs of infection!!!! Odd but actually that suited me fine. But back to the appointment.

I actually saw the rheumatologist that I saw a few years back for my wrists so that was good, not that she remembered me but I knew that she was easy to talk to and had done a good job the first time around. So after talking and examining me, oh bejabus how that hurt! I think she got the message that I was in a lot of pain. Let me just explain that Fibromyalgia can be diagnosed by tender points in certain areas across the body that can be extremely sore to the touch, even very gentley. So that was a given. At first she didn't mention the word Fibromyalgia until I did because she believed that ME/ CFS and Fibromyalgia were all in some way connected, different faces for the same beast as it were. She noted that I usually present more fatigue and sleepy symptoms but because my body is in recovery after a flare, which was a bad chest infection I had a few months ago and left a bit too long to get treated, that now my body was presenting more Fibro symptoms. Just goes to show how long it takes to get over something as simple as a chest infection and the lasting effects it has on our bodies.

On the other hand I'm not too sure about the whole lumping the two illnesses together. I guess that could be down to her referring to it as CFS- chronic fatigue syndrome rather than ME- myalgic encephalitis. Chronic fatigue syndrome is a term hated by many sufferers as it doesn't describe even half of the other symptoms that are all part and parcel of this condition, whereas myalgic encephalitis describes a range of symptoms and has that all important word 'myalgic' which refers to muscular pain. It is certainly possible to have one without the other and there are two different societies for them. But many people with ME will get Fibromyalgia too. Like I say there are so many theories and opinions out there on these conditions that it is quite confusing and each person you see will have different terms and opinions. Oh dear. Anyhow as I meet all the criteria for Fibromyalgia based on the tender points and some other symptoms such as fatigue and foggy brain I think it's safe to say that I have ME and Fibromyalgia. She did give me a booklet on Fibromyalgia from Arthritis Research UK so I am slowly working my way through that and when I do I shall be back here to explain fibro in a bit more depth for you all.

So as well a having a flare up of symptoms after this chest infection she also thinks that it could be down to a lack of sleep. Now I know so many people who will laugh at this, myself included, given that I can have 20 hour sleeps and have never in my ME time been able to cope with less than 12 hours. However I never, ever feel refreshed afterwards, it's like a perpetual hangover- oh what is one of those again? This could be a sign of not getting enough restorative sleep or stage 4 non dream sleep and therefore my body isn't recovering as it should. So her first step and that of my GP is to try an address this sleep issue and try and get me some quality zzzz's. So it just goes to show that it doesn't matter how long you sleep for as long as you're not getting restorative sleep you are risk of Fibromyalgia symptoms and other nasties. So the next step is to try to tackle this and find something that gives me better sleep without making me anymore drowsy. She recommended a drug called amitripiline that used to be used to treat depression but now that they have more effective tablets for depression it is often used as a pain medication and for sleep. So fingers crossed it will do some good and if not on to the next.

As well as that she said that every day that I should try and move around a bit more and that means move not exercise. Mainly move more around the house when possible and a little more every day to get the muscles used to moving and to tell those dodgy pain signals that walking around really shouldn't be hurting. But obviously they will hurt at first as they get used to extra movement. So it's just about finding that balance. I have been trying to do a bit more each day even if it's just walking to the bathroom but it's also been nice to have been able to get downstairs. Change of scenery and all that! Plus more sky channels to peruse. Having the pain killers certainly does help though, but I'm pretty sure that I won't be  running marathons anytime soon, not that I have ever wished to run a marathon.

She also has repeated my blood tests for muscle wastage and damage and to check my vitamin levels as that can lead to extra pain too. But as well as traditional medicine she said that more holistic treatments could be worth a try. Such as accupuncture, reflexology, massage, reiki etc etc, so there's plenty to have a go at. But for now I it seems like getting my sleep in order is the key issue. My GP rang again on Friday to see how I had got on and he is going to some research into the amitriptiline and other possible drugs and we are going to be gradually reducing the neurontin as they haven't seemed to have worked as well as hoped. We're also going to slowly reduce the oramorph, so good news family my crazy ormorph conversations will be around a little while longer.

So that's where I'm up to. Again apologies it's taken a few days but then it really wouldn't have made any sense. I will try and get a post on Fibromyalgia out as soon as I can.

Thanks for reading

Tuesday, 6 August 2013

The power of a good doctor

This week has been one of the worst, no the worst week since all this ME madness started. Let me just clarify, when I say worst I mean as in for symptoms, no other dramas. Well maybe some drama, ahem. I have been bed bound from Saturday until Friday and when I say bed bound I mean can't even stand up bed bound. This of course meant that I couldn't even stand up to get on the commode so I have been sliding, scooching and launching myself (ye, that last one wasn't too good) on and off it. Needing help but then screaming at my Mum everytime she touched me as it hurt too much. I'm glad she understood that all my 'French' was not aimed at her. At one time I had to kind of reverse onto the commode that had been pushed right up against my bed and sat on it with my legs out on the bed. That wasn't good! I thought I would pass out and actually it's really difficult to wee like that (sorry about that.) I have also found that one of the worst things is when I am sitting on the edge of the bed to try and bring my legs back up onto the bed. I have had this problem for a while now, as I generally need to sit anywhere with my legs out. Anyway in desperation the other (this word is really bothering my battered brain I keep wanting to put over or offer, naughty English language) night I literally just let myself 'drop' onto my side. Problem solved. Thank goodness for being top heavy haha.

The amount of pain that I have been in (and am in) has been actually quite terrifying. I really did not know what to do. If I moved my toes pain shot through my body. Because of the warm weather I have been sleeping with just a sheet and then a fleece blanket on top if needed. I can't do the whole sleeping without some kind of cover for some reason. Maybe it's a comfort thing? But just the tiny tiny extra weight of the fleece blanket felt like an elephant was sat on me. However in taking the blanket or the sheet off that too made me howl (hmm maybe I am a werewolf too Irene.) How can these very tiny simple movements cause so much pain? On top of the constant ache that you already have. It's insane, maddening, literally madenning.

As I mentioned in another post, on Saturday night  I rang the out of hours doctors service because I was not coping and was at my whits end. But all the 'nurse' said was that there was not much that they could do because they did not have much stock. This out of hours service is run out of a hospital! She just said to take some ibruprofen as well, which I really am not supposed to take, infact a big red banner comes up on my notes to tell them that I cannot take it. But this was all she could say. To say that I was angry and upset is an understatement. I just wanted help. I was reluctant to ring for an ambulance (there is no way that I could have got to the nearest A&E without help) although I was thinking that maybe I would need to. I really did not want to go to hospital though and go through the stress of trying to get an ambulance on a Saturday night (that's if they deemed that I needed to go in to hospital.) Then there would be the crazy, over stimulating environment of A&E where we would probably have to wait sometime to see a doctor and then if I did get admitted I dreaded yet more calamity and the lack of privacy and peace afforded by those dreaded curtains. Seriously once you've heard an old lady shouting I'm doing a poo, you are scarred for life. What's more I would not even be able to help myself to get a drink, even if they put that tray on wheels right by my bed. I had that problem when I was sent in when the ME finally hit me. And of course they are forever moving that tray away. I would be constantly on the buzzer, because I could do very little for myself and that would just annoy everyone. You know yourself that you curse the person who's buzzer goes off when you are just drifting off to sleep or the annoying alarms on drip machines. No hospitals are certainly not the most relaxing of places, especially when you're ill, as silly as that sounds but they don't afford you the rest that you need. I have had many a doctor say this to me even. Anyway I am not hospital bashing, for where would we be without them just pointing out some of my annoyances from far too many stays. I look forward to when there are more single rooms, not that I particularly want to go into hospital but it will certainly solve a lot of issues such as privacy and infection control. But enough digressing. I feared that even if I did go to hospital that they too would say that it was 'just' the ME and that there wasn't very much that they could do either. So I decided to just take the ibruprofen for the time being and see how I got on, or just try and put up with it.

Somehow I got through the weekend and first thing on Monday morning my Mum (bless her heart) was straight on the phone to my doctors to ask whether they could give me a prescription or a phone consultation. The receptionist said that she would put me down for a phone consultation with my regular GP but what happened later was a miracle, well a little one my GP actually came to the house! It was like seeing a mirage when you've been walking for days in the desert, not that I have ever done that, apart from that time me and my sister got lost in Cyprus trying to find this aquarium. Somehow I managed to tell him what was going on and he was very good as to not torture me by doing the whole "does it hurt here? How about here?" thing. He could tell from me having moved my toes and moving the blanket that I was in pure agony and panting like a woman in the last stages of labour. As I have an appointment with the rheumatologist on Wednesday ( that's tomorrow, hooray!) he said that his main concern was to get the pain under control (Halleujia!) and to stop those ruddy ibruprofen before I have anymore problems. So he prescribed me some oramorph and said that he would phone on Wednesday to see how I was getting on. I could go into a big diatribe about the usage of oramorph here but I'll save you all. Let's just say that I was quite shocked that he precribed it for home use (not questionning his ethics at all) but I was glad he did, I sure needed it.

However the oramorph seems seems to be having some effect. By the Wednesday I could tell my GP that I had managed to get some much needed sleep and that I had actually managed to stand up to get on the commode. However I wouldn't be able to make my appointment with him at the surgery the following day and again he said that he would come out to me again. Where I was able to tell him that I had managed to walk to the bathroom and back but that I was still needing to take the oramorph and paracetemol regularly. He was happy with the progress and was hopeful that I'd be able to get to the hospital without too much distress on Wednesday, luckily it's fairly local. Well more local than the main hospital.

He touched a few 'trigger points' ( I will explain more about that soon) on my legs and the radiation of the pain was horrid. However he explained that due to this he was fairly certain that I also have Fibromyalgia (will explain that one soon too) but he'd see what the rheumatologist had to say. He explained to me that what seems to be happening is a problem with my nervous system and pain signals that have gone haywire. In a way that something that shouldn't hurt like a simple tap, wiggling my toes and the weight of the blanket is actually causing me an insane amount of pain. Where of course they shouldn't hurt that much, well actually not at all. A blanket is for comfort after all. Since he explained this though it certainly has helped me understand what is going on and how I can be a bit more careful. This is what the neurontin tablets have been trying to combat but they don't seem to be having much of an affect on me. Oh why am I so awkward? So he has advised me to start cutting down on them. It's important to come off these gradually because otherwise it could be nasty.

The doctor also said that if I am diagnosed with fibromyalgia as well then he has "ways and means" as said in a German accent, he's a funny guy, to hopefully get it under control. So I feel pretty reassured. I am certainly grateful to have a GP that is being proactive with my care and actually researches different treatment options. Maybe he likes a challenge! But having a good GP is paramount. They are your first point of call and have access to the bigger picture in terms of your medical history. Threfore it's important that you have a good rapport with your GP. That you feel you can talk to them. For that is the only way that you can get the best care for you. Of course they have a duty of care but if you can't talk to them openly and honestly then some issues don't get addressed.

When you have a chronic illness admitedly getting to the doctors can be quite a trek. You have to be somewhere near your best to be able to get there and yes I know that again that sounds crazy. So in a way your GP may not get a true sense of what you are experiencing. I will admit that I will generally talk more about my pain and fatigue levels and sometimes forget to focus on the lifestyle aspect, such as how much activity you are able to do. Not on purpose of course but sometimes you forget the necessity of mentioning these things or you somehow assume that they know. Well they're not mind readers. I think that with having the home visits last week my doctor was able to see exactly as I was living. Like I'm sure I never told him about using a commode (sorry I keep going on about that, don't I?).

A good doctor though can really make a big difference and I am really grateful to mine at the moment. He is going the extra mile. I will admit that sometimes I will see other doctors within the medical practise but that's because in my many visits I've learnt who is best for what. Okay, admitedly it's all ME related at the moment but if I were to have more depression issues I have another preferred GP for that, who's a bit more of a listener. The day I go in there with something normal is always a shock. I have to say "can I stop you there I'm actually here as I have a sore throat."

But the lesson is that you need a good allae in your doctor. One that will listen and try everything to help. One that isn't afraid to research and learn new things but also to ask for help. Such as hospital referrals to get you the best possible outcome. With a chronic condition it really is crucial because you will see them more times than you see some members of your family. So if you don't have a GP or doctor that you can gel with don't be afraid to find one that will. Yes it can be a hassle but they might even be in the same surgury. But you owe it to yourself and it's nothing short of what you need and deserve.

So I will keep you posted about how my apppointment goes. I hope she has lots of time as I have been trying to keep a list with everything on there and lots of lots of questions.

Night

Monday, 5 August 2013

All by myself...

Apologies but I am feeling the need to vent. Call it boredom, call it cabin fever, call it frustration or all three plus more but I am actually feeling a bit lonely. No offense to my family. Lonliness is strange, it doesn't always mean being on your own- heck you can be in a room full of people that you know and still feel completely alone. Because your head/ brain is addled with thoughts that you are different, that no one will understand or can relate to what you're going through. Sometimes that's just distorted thoughts but it's sad all the same.

Since being lain up in bed (post to come soon) I have been coping not too badly. Better than I thought I would anyhow but then again I haven't had much choice. But actually I am starting to miss the outside world. My friend is putting up lots of statuses and photos from the holiday that I should be on and it's driving me a little mad. Oh I know full well that I wouldn't have coped and there is no way that I could have gone and I'm very comfortable with the decision not to go. But that still doesn't stop those feelings of missing out. Maybe it just doesn't help that things have been at there worst this week and I haven't been able to get out what so ever. There has been very little distraction from being ill. No 5 minutes out that you can somehow pretend you're not ill for a little while. My curtains have hardly been open either so I literally have very little clue what has been happening in the outside world.

There is only so much solace that you can get from facebook, television and reading, apologies Scarlett. Trust me I have been reading a lot! Reading Gone with the Wind as well as being a book that I have been wanting to read has been a way to try and slow down. Sometimes it's nice to be somewhere else. At the end of the day we are all social animals and while family have been over I still long to be out. But I know full well that that is a little beyond me at the minute. My priority is to get to my hospital appointment on Wednesday because that is all important. So I am trying to save some spoons, or put in an order for some to be made. But again it's all about this illness. Ahh is there no escape! Oh how I wish I was in Greece right now. Something about that place just makes me flourish and so happy. Sometimes you can't shut me up. Every time we leave there is usually a crowd to wave us off. Mind you thinking about it that could be to make sure we leave haha. But I guess that's holidays for you. I do miss my Greek friends though.

The other day I found a diary from a year ago, one diary was in the form of the diaries I mentioned in the post 'Thing's I learnt at clinic diaries' but more of a list than a chart and I also found another that was more of a feelings diary. My list diary has subsequently took on a new life as my medications log- to help with the poor memor and to hand to the rheumatologist on Wednesday. Anyhow I was reading through them and was actually quite shocked at home much that I was actually doing. I was even getting out of the house on subsequent days, something I can't remember doing for a good while. Usually if I get out then the next day or days after are 'recovery days.' But there I was a year ago getting out a fair bit. Wow it feels like another age. It was a friend of mine'ss 40th birthday and I was in charge of organizing it, given my organizing skills and because I felt I needed something to do to keep my mind occupied and of course because I felt she deserved a really great party.  Of course you can do so much online nowadays but I was out and about getting things and making things too. Of course I could never go alone and I most certainly fell asleep many a time on these trips but looking at where I am now and seeing it down on paper what things were like a year ago really gave me quite a shock. It was mostly written in blue ink aswell, signifying that I felt okay. This was probably down to me having some skills in managing my ME from going to the clinic and knowin more about wwhat my body could handle, which I'll talk about in future posts. I did wonder though whether this could have led me to feeling the way I am now but that is no way of thinking. Because in no way back then was I not suffering. There were plenty of 20 hour sleeps. Like I said from the blue ink it seems thngs were quite controlled though so that is good and as I have said many a time all we can do is live in the moment. You can't think 'oh I best not do this now, because a year or more from now I will regret it.' That's just not living and our lives our limited enough. That party took it out of me though, you bet. Even with bein sat down for most of it.

I have been going on twitter a lot recently and have been talking to other ME sufferers, which has been nice. It's strange because you feel like you know them as they have very similar experiences to your own and like you are searching for some validation that they are not the only ones out there going through this. There is a great community of people on there. It's easy to take them in to your heart because unfortunately you have a good understanding of one another. Of course it goes against everything your parents ever told you about talking to strangers but it's nice to find a support network. Especially when you're bed or house bound, the internet can be a bit of a saving grace. Unless you are on ebay or amazon marketplace at 4am oops! There are people out there that understand and it's always good to talk. I am actually feeling a bit better after venting. Apologies for moaning. Oh dear I have I just whacked my self trying to get a fly and now my whole arm thinks it's been assulted. Finding it hard to type now. Oh dear, what madness!

Thursday, 1 August 2013

Topsy Turvey

This post was originally posted in July but it has decided to shift as I edited it. Odd! So any reference to painkillers is obviously out of date.

It is never a good sign when at 3am you are Googling what other pain killers you can take as well as the ones you're already dosed up on. The last 2 nights have just been awful. The pain in my legs has been keeping me awake all night and shown no signs of responding to any painkillers, neurontin and cocodomol, heat or massage. It is truly driving me around the bend. After my trip to the doctors on Thursday he has decided to change the celebrex to neurontin or gabapentin as it is also known, because by now I should have noticed a difference with being on the celebrex for a month, or is it more? To be honest I'm not overly sure what month it is, time has so little consequence at the moment; apart from "when can I have my next dose of painkillers?" I know I need to give the gabapentin time to build up in my system as I am still on 3 100mg tablets a day and then will build them up by 100mg as directed by my doctor but f**k me I am in pain! The muscles in my legs feel like they are on fire and are pulling away from my bones. It feels like I am being tortured on a Medieval stretching devise. Then there are the sharp shooting pains that literally make my legs jerk and just that small movement triggers yet more aching. It makes me naseous. It's small wonder that I cannot sleep. There is no way of switching off and trying to block out the pain. All I can do is to keep up with the pain killers and try to massage away any niggles, whilst accepting that however much I need to sleep, it just isn't going to happen right now. Generally around 7am or 8am as the world is waking up I am beginning to feel the affects of 'pulling an all nigther' so to speak and am finally at that point where exhaustion just takes over me until I am fast asleep and don't wake up again until about 4pm. Even then I generally feel as though I could easily fall back to sleep if I wasn't hyper aware of needing to take my tablets and my stomach grumbling at me with starvation.

This back to front lifestyle is no good at all. As I have just mentioned by the time I have woken up I am overly hungry. Usually my stomach begging to be fed will wake me a few times but never enough for me to come to properly and actually take action. I know I intend to do so but can't open my eyes and just those few minutes thinking about it before I am asleep again is enough for me to have many a dream about reaching for my phone to ask for some breakfast or even more annoyingly, dreaming of actually eating breakfast. Then waking up thinking "oh I've had breakfast today," when my stomach is telling me otherwise. Don't you hate dreams like that? Ever dream that you have woken up and gone to work and then when your alarm clock rings thought " what the hell? But I've done this already."  Cruel isn't it? I used to have this a lot when I was at university and college; I think it's because they occupy so much of your thoughts whilst you're awake that they just seep into your subconscious. Especially when there is a deadline to meet or maybe you're just excited about something. Anyway as I have said by the time that I have come round enough to move and actually put these thoughts into action it is generally very late afternoon (when I have been awake the whole night) and by then of course it is no wonder that I'm starving. I have effectively missed 2 meals and keeping hydrated, not to mention any snacks and this in turn creates more problems. How can you expect to have better energy levels if you do not eat and drink sensibley and by sensibley I don't just mean healthy foodstuffs I mean  eating regularly to support your gastric system and counteracting any natural energy dips and drinking enough (water, not alcohol ;-) ) will keep you hydrated, as dehydration is another arch nemesis of fatigue.

It is recommended that other than during sleep, as in normal sleep at night time, you should go no more than 4 hours without eating something to maintain a flow of energy throughout the day and of course to negate any feelings of hunger, which sends the body into a sort of panic mode. However if you are asleep most of the day all this goes out of the window. It is a battle of needing to sleep, well not having much choice in the matter when you finally can drift off and making sure that you eat, beacause let's face it you need the energy. So it is just problem upon problem. What usually ends up happening is when I do wake up I start making up for lost time and filling my chops, which isn't exactly healthy either as your metabolism is slower of an evening but what are you supposed to do? You're hungry; you're going to fill yourself until you are no longer hungry. It is also even more tempting to fill up on short burst energy foodstuffs, like cake and chocolate because you want that rush of energy but that's not exactly healthy either. I say this as I'm eating a crunchie oops! But treats are also good. In the past I have tried to ensure that I manage to eat 3 meals a day, even if I fall straight back to sleep again soon afterwards, hopefully not during. However when pain is keeping you awake all night and you're too exhausted to open your eyes during the day, there's very little control. Again it is like choosing which one that you need most but then again sometimes that choice is made for you zzzzzz.

One could argue that we do not need to eat that often as it is not as if we need it for the small amount of activity that we do. But everyone needs to eat to suppport their bodies and keep all our systems working and chronic illness or not that doesn't change. If anything we need to support our bodies even more. We need all the help we can get. Plus as our bodies are constantly tuned in to hyper mode, overly sensitive and screaming with pain we are constantly exerting ourselves. We might not be moving around as much but our brains and nervous system are busy, busy, busy. So yes we do still need to eat and drink regularly and lets face it we can ill afford for our bodies to break down anymore.

Furthermore if we are asleep all day then we miss out on even more. Big events like getting out if possible or company and furthermore daylight. No wonder we have no concept of time. Just that glimpse of daylight lets you know the time and helps the body to regulate itself (as in a natural bodyclock). We are all biologically programmed to be awake during the day and sleep during the night. Unless you are a Vampire or indeed an owl. This is why a lot of people with M.E are referred to as night owls, because our body clocks are all awry. Furthermore because we are waking up late it inevitabley means that we will fall asleep later. Unless you are having one of those super exhausted days when you can't help but sleep for 20 hours. Again creating more problems and messing up your sleep pattern even more. It's such a difficult predicament and again one you have little control over at times as sleep consumes your day after a restless night of pure agony.

Then of course there is our moods. Being in constant pain doesn't exactly make us the most cheerful of people at times. It is exhausting and comsuming. Then add this to the lack of company or small activity and again sometimes missing out and it's enough to make you miserable. As I have said my mum works from home and often I will get woken up by the children; one has developed a habbit of going to the bathroom a lot to try and wake me up so I can go play and often I wish I could. I have even been in bed trying to sleep through my family having Christmas dinner and what was worse was that my friend from America was staying with us. What a Nellie let down! Luckily she was very understanding though but I wasn't best pleased about missing out. From a purely psychological point of view there is definitely something to be said about seeing daylight, think seasonal affective disorder, not only does it regulate our bodies but subconsciously it affects our moods too. People are just generally happier in the sun. But if you're in bed all day not only are you not getting out but you are blocking out the sun with your curtains. I say this like we live in a sunny country haha, so maybe I should refer to light not sun. I think this is part of the reason why I see some improvement whilst on holiday, all be it small physically the last time. But I manage to get into a better routine. Sleeping through the night and managing to eat 3 meals a day. Okay I have a siesta but there's nothing wrong with that.

So what are you supposed to do? Well on those days I guess there isn't much that you can do and somehow you just have to accept that. Just try to keep the pain managed as much as possible and eat when you can. I know better than to try and beat sleep like that. Then when you are having better days or a few hours, eat, keep yourself hydrated, if you can get outside for 5 minutes do so- any longer is a bonus and open those curtains when you're not asleep. In the meantime my Greek is coming along nicely and my bedside table resembles a small library. It would be nicer to do them in the day though but you just have to take everything as it comes.