Tuesday, 24 September 2013

The practicalities of cooking and preparing food; some useful tips

Carrying on from my post on healthy eating and some useful tips about food shopping, today's post is about ways to manage cooking and preparing food for people with a chronic illness or even an injury and sometimes pregnancy. Unfortunately for many people with a chronic illness this can be elusive or very limited and many sufferers require help, whether that be to assist them or to prepare and cook meals for them. Personally, I do not have to prepare or cook any meals as I live with my parents. That of course is not an excuse not too, it's because I find it very tiring and also have difficulty standing for periods of time. It is one of the reasons why I had to move back to my parents and I am forever grateful for their help, even if at times I dislike asking for it. On good days I can pour myself a cold drink and get things out of the cupboards but on bad days I need help with that and may also need help to cut up my food and use a straw in my drink, because I cannot lift up the cup. On some occasions I have also had to be fed. Non of which is very nice.

What can cause problems is the fact that my meal times can vary and be different from that of my parents. This is because my days have no set pattern and when I eat very much depends on when I am awake. Neither of which is particularly good or healthy. When I end up eating at different meal times I can sometimes feel like a burden and will often ask for something very easy and quick to make. There is only so many times that you can eat toast though! If my Mum is making a stew or some sort of sauce etc then she tends to make a big pans worth and then freeze several portions and give them to my Nanna, who is 87. Lately she has been setting some by for me too, sorry Nanna. Therefore they only need to be heated up in the microwave then. Microwaves are a great invention.

Many people find cooking or baking to be very therapeutic and find that they enjoy the creativeness and relaxation of cooking and baking. In which case they may want to use some of their spoons (see spoon theory post) on cooking and baking. It all depends on the person. Some people like to be more hands on and creative with their recipies if they also suffer from a lot of food intolerances, which can also affect many people with M.E. There are a lot of great blogs about M.E that have some nice recipies for gluten free diets etc. A year ago I used to do quite a lot of baking and used to enjoy the relaxation and creativity of it, as well as the eating of course! I used to enjoy the arm work out of not using a mixer but after some post exertional malaise I started to use a blender and also to try and sit down as much as I could rather than stand up. Unfortunately I haven't been able to do any baking lately.

The following links have some great tips to help people with a chronic illness or injury cook and prepare food. It has been compiled by chefs, occupational therapists, authors on disabled living and accessible kitchenand bathroom designers and give a range of tips for sufferers and carers.

http://www.thekitchn.com/cooking-with-a-physical-disability-171416

http://www.cookingmanager.com/tipscooking-disability-injury/

I thought it would be better for me to give the links rather than me re-hashing, especially when there's some really good tips. So be sure to take a look. I have included a few others below, some of which I learnt at clinic. Remember all the tips don't apply to everyone and may be suited to each sufferer at different times during their illness. Knowing that there are ways though that you can help yourself and help others is great and allows us to pick and choose what we need in order to keep us as healthy as possible.

* Is there someone that is available to cook meals for you. Perhaps if they are cooking in bulk they can give you some portions to freeze.

* Can someone help you to prepare meals? Or to cook them?

* See my post on shopping for food for links on companies that deliver frozen foods that just require you to defrost and heat up.

* See your GP about what is available in your area to help you. Or to refer you to an occupational therapist.

* Seek advice from an occupational therapist who can advise you on different techniques that put less strain on the muscles as well as any equipment that would be of use to you to help make preparing and cooking food easier

* Visit a specialised disabilty equipment shop to see what is available and to also get advise.

* Do not be ashamed or put off by microwave meals. They are easy to prepare, thus saving energy. Have a look out for good quality ones that have less saturated fats and not processed to make it a more healthy option and you can always add extra vegtables or a salad too it. The dietitian from the clinic gave us this tip.

* Use pre cut vegtables, either fresh or frozen. Always annoys me how they are more expensive though

* Do the dishes another time if you do them manually. If you do have a microwave meal then save on dishes by not putting it onto a plate aswell.

* Sit down as much as possible to put less stress on your legs.

* If there is  a gadget to help you do things easier, use it. For example with the mixer. You may also benefit from an electric can opener.

* Store the things that you use most in easy to reach cupboards. Cereals and bowls for example.

* If you find it difficult to sit in a chair to eat your dinner because you need to keep your feet up try a tray that has a cushion on the bottom of it for more comfort and stability.

* Try to find lighter weight knives and forks if you suffer from pain in your hands or wrists. If  you eat out or at a family members or friends then take them with you too.

* Others may benefit from wider knives and forks, because your hands are less clenched and therefore put less strain on the muscles and joints. Again if you eat out take them with you for comfort.

* If you struggle to hold a cup or fear that you may spill a hot drink then use a straw instead.

* Keep snacks in easy to reach places so that if possible you can get them yourself.

* If you can handle the weight of a jug try keeping one close by so that you can easily top yourself up with water when you need it without going back and too to a tap. Best to try one with a lid.

* If you can cook for yourself, consider making bigger portions and freezing them for future dates when you aren't feeling up to it.

* Break the process into sections. For example prepare the food, then have a short break before cooking it.

Again my best advice is to seek help where you need it and to know your limits so that you don't make yourself more unwell. Whilst at clinic we were told of a sufferer that was making herself suffer even more because her family expected her to prepare, cook and then clean the dishes and put them away afterwards as she had done for many years before she became ill. However because she was suffering from a lot of post exertional malaise doing this, she decided to take drastic action. She decided to get a lock on one f her kitchen cupboards where she kept enough crockery, cutlery and pans to make her own dinner. Then each meal time she would simply cook or prepare a meal for herself and wash up her own dishes. After the dirty dishes started mounting and her family weren't being fed by her they soon realised that they needed to help out and the extent of the illness. This may seem drastic but they found a way to help themselves and however much we may hate it sometimes we need to be selfish in order to not exasberate our symptoms.

I hope that you have found these tips and those on the links useful. If you have any further tips then please leave a comment. It would be great to hear them.

Sunday, 22 September 2013

Life on wheels

Two weeks ago I was a little bit naughty and wreckless. Yes, I went and bought some new pyjamas! Firstly, this was wreckless because I had had barely any sleep the night before. Secondly because it involved going out and not staying in when I should really have been resting and thirdly it involved a nerve racking, rolller coster ride of a wheelchair journey. However a woman that does as much lounging around in their jimmy jams as I do needs to keep up a good stock of what I like to term 'day wear.' To give myself credit as well although my sleep had been very poor the night before, in the morning I wasn't feeling too fatigued and felt as though I could just about manage it. Sometimes, as much as you know what you should and shouldn't do and drum into your self the importance of pacing and the dreaded post exertion malaise, you just have to take the bull by the horns while the going is good. Because good days are few and far between, good hours can be. So you can see our logic in making the most of feeling 'not too bad.'

So in the spirit of making the most of things I decided a trip to Primark to stock up was on the cards. So it meant another trip on the bus into Chester. However I have to say that this time didn't go as smoothly, smoothly being the opperative word. No Mum that is nothing to do with your driving (wheelchair that is) in comparisson to my sisters! Firstly the bus driver on the park and ride wouldn't put the ramp down. There is a ramp that folds into the step on the bus for disabled passengers and buggies. He did lower the suspension so that the step was lower but for some unknown reason would not lower the ramp; even after I asked. So I just stared at him blankly. Was he expecting me to get out and walk on to the bus. Now I know that I may not be in plaster or look as though there is anything physically wrong but the wheelchair is a big give away that there is something wrong. I'm not just using it for the fun of it. Maybe he was expecting my Mum to lift my chair on?  I am in no way heavy but I'm not a small child either that can be lifted up steps and curbs easily. Neither should my Mum be expected to do so. She could easily do her self an injury.

Just as a side note I think that there should be some kind of manual handling help for parents or other carers. Maybe there is one? If anyone knows please let me know. It's something I'll have to research. Being a stage manager lifting properly is something that got drummed into us. I think of all the times where I need help to be lifted, especially on really bad days and think that some tips on good techniques would be useful. Obviously I know about lifting bits of steeldeck but you can't hurt steeldeck like you can a person.

Anyway back on topic. In the end the driver ended up lifting me on and although he said it in jest he called us novices. Now, I have grown to see my chair as a great help and not a hinderance but ideally I don't want to be anything more than a novice. I don't want to be bound to my chair. Even if I had been in a chair for years though the fact remains that I should not have to risk damage to myself by stepping onto the bus. Or my Mum should not be made to be put at risk of injuring herself by lifting me. Not on to a bus that has been designed to help disabled people to use public transport. What was the problem in simply pulling out the ramp? Why put yourself at more risk by then having to lift me on? Needless to say I was not happy.

Again when it came to getting off the bus he didn't lower the ramp. Meaning that he had to lift/ tip me off. I was clinging onto my arm rests in fear. Again no different to how you would handle a child in a buggy. But I'm not a child. Getting off the bus like that actually scared me. Something I think I should definitely not be made to feel. It felt rather indignifying. If that was the only way to get on and off the bus then fair enough but I'd chosen to use the park and ride because of it's accessibility. It just really upset me. I know it doesn't sound like much but until you're the one being subjected to that behaviour you don't get a sense of what it's like.

Moving on to some funnier tales from that day. I stocked up on lots of new pair of pyjamas and slippers, as well as some winter staple pieces. My Mum got some things as well. By the time we got to the till the fabric basket that I had resting on my thighs was pretty heavy, which wasn't great for them. When the cashier put it all into bags though there were 3 of them. Plus they are those awkward big brown paper ones. The ones that are a nightmare if it's raining because all your purchases get wet and they usually break ( in my experience they always break no matter what the weather meaning you have to carry them like a sack of potatoes) I looked at the bags and thought damn it how are we going to manage with all them. Clearly we had not thought this through. I just want to say for those that don't know Primark is a shop that sells cheap clothes, so getting loads of things is usually quite commonplace. I am not rolling in money. Especially for basics, nightwear and holiday wear. So there we are my mum, me and my wheels and three big shopping bags.

My wheelchair is a self propelled one, not that I do much self propelling as it hurts so much. Really it does! The problem though with self propelled wheelchairs is that you can't hang bags off the handles because they get stuck in the spokes and can make a right racket. So what we ended up doing was piling the bags up onto my legs (ouch!) until I could just about see if I squashed the bags down a bit. Painful but oh so funny! I hope you all have a good visual in your heads. I'm sure some people in Chester that day had a secret chuckle too as we made our way back to the bus station. Honestly the lengths we go to for fashion. Even if it is pyjamas. 

For all our struggles it only rubbed salt into the wound/ made the outing more surreal when at the bus station we saw a man with only one arm and one leg in a wheelchair propelling himself along without any assistance. Luckily the bus trip home was better. The driver did put the ramp down, much to my relief. Although dozy me did unfortunately have to end on a bum note. It very nearly was a bum note too. I decided that if my Mum took the bags, even though a lovely old man offered to take them ( he was looking at me with some concern as I was grimacing in pain on the bus) then I could get down the ramp. I completely misjudged the ramp and ended up with one wheel off the ramp and one on. Luckily for me I was saved by the bus shelter and didn't crash into it too hard that I was hurt. Not sure how the bus shelter fared though. After everything and because I was tired and in a lot of pain I just broke out in laughter.

Overall though as I have said I am grateful for having a wheelchair to be able to get out. I have taken to referring to it as my trusty steed. That bus driver really got on my wick though. No one deserves to be put at risk or treated like an object. Anyone else had any bad experiences with being in a wheelchair or find that you are treated differently? Leave a comment and let me know. I hope you have enjoyed some of my crazy tales though too.

Thursday, 12 September 2013

Invisible illness week

This week it is Invisible illness awareness week and I feel as though I should mark it in some way. Just how to do so though has left me wracking my brains. I almost feel duty bound to be shouting it from the rooftops and being out on the streets campaigning but when you actually suffer from an invisible illness it can remain all the more invisible and silent as you do not have the strength to spread awareness so proactively. But what I can do is write this blog and to share my experiences of suffering with as much honesty as possible. In doing so I can help raise awareness in a way that truly portrays what it is like to live with an invisible illness. The more candidly that I write the less invisible this illness can become and more people know about some of the terrible things that some people are suffering that otherwise they would have no clue.

Because it is just that. It's invisible. To an outsider it can seem as though there is nothing wrong. I am not saying that I want sympathy, many sufferers don't. But the world needs to know how many people are living half lives because of so many conditions that are stopping them and that they are powerless to overcome. We may appear lazy and may be labeled benefit scroungers but many people feel the loss everyday of what they have had to give up due to illness. People have given up high powered jobs that they loved. Have seen their relationships and marriages torn apart from the stresses that an invisible illness can put onto a relationship. Felt the financial strain of living on one income or benefits. Or to have dinner cooked and the house cleaned while everyone else is at work and they feel that that is the least you can do to contribute. But it is in no way that we do not want to do it. That we would rather be lounging in our pyjamas watching rubbish television. Because we hate it. We want to contribute. To feel that we are of some value. To feel that we are in some cases a fully fledged grown up.

I've just read a blog post that talked about the usefulness of getting a wheelchair but like me they worried and debated about what this would signify. Is it a sign of giving in? Losing hope? Will it impeed any recovery? As well as all the self conscious anxieties about how people will percieve you and see you as different. Solicit unwanted sympathy. It spoke about how using a wheelchair is a clear symbol that makes your illness 'visible.' People know straight away that you are suffering and may adjust their behaviours accordingly. But in reality it doesn't necessarily mean that you are suffering anymore than you had been. However a wheelchair or mobility scooter or even a walking aid can simply be a tool to help you to gain back some normality. To help you get out and not confined to the house. To do things that were otherwise impossible. But without them if someone saw you stumbling about, needing to be supported the likelihood is they'd percieve you as drunk. Yet someone having a tool like a wheelchair takes away some stigma and invisibility. But for the sufferer it might be the last thing they want. As I said it is a big daunting decision to make. Saying to the world to view you as disabled. When all you really want is just to be able to meet a friend for coffee or go to a shop.

For me in allowing me to get out from time to time it also helps me combat some symptoms of depression and anxiety. Because I have suffered from these conditions in the past and I never wish to suffer from them to that extent again. Unfortunately for these illnesses you can't use a wheelchair or a stick to make it more visible. They can be scarily invisible and lonely and hold so much stigma which can only make these conditions yet more invisible. Making them even harder for sufferers to cope with and to seek help.

In my experience of suffering from depression, anxiety, M.E and Fibro I have discovered though that talking about them can be helpful and cathartic. By listening to or reading about other sufferers stories and experiences it can really be insightful and make you feel less alone. That you are not the only one in a way. As sad as that is. So for me by talking about my condotions and reading other blogs it really is the best way to spread awareness. To show the person behind the illness. Of course a cure would be amazing and more needs to be done to get us much closer to that point and prevent many more people from suffering.

But for everyone with an invisible illness sharing their experiences and making themselves less invisible I have huge respect for. It touches me that I have had so many people have seen my blog. Just to have made one more person aware of what ME is feels like a big achievement. And I am thankful for how it has brought me closer to other sufferers who I can chat to and be fully understood as well as feel more ME than M.E the condition.

Monday, 9 September 2013

Some steps in the right direction

So it's been a little while since my last post so I thought I'd give you an update. I know I said my next post would be on the practicalities of eating healthily but it is on it's way. It's taken a bit longer as I've needed to research it a bit more and that requires brain power. Brain power is slightly lacking at the moment. The change in the weather has left me feeling a bit fluey with a foggy head and pretty achey. That's without having been outside as well. It's like we are sponges, just soaking up anything going around, usually nasty things of course. I'm a bit worried that I'm coming down with a cold, I just hope it doesn't develop into anything worse and for that to then be disastrous on the condition has a whole. Afterall I am still living with the effect of the last chest infection. But I shall try not to catostrophise.

Anyhow the good news is things have not been too bad. Actually in some respects I need to give myself more of a pat on the back. This is something that can be taken for granted, as you always think that you should be doing more. But of course this is always in comparrison to what a 'normal, healthy' person can achieve and not an improvement on how you are at your worst. Going back to when I went to see the rheumatologist, she said for me to try a medication called amitriptiline. Amitritiline is a drug that used to be used as an anti depressant but since the invention of better anti depressants it is more often prescribed to treat pain and to aid better sleep, which in itself can have a big impact on pain levels. At that time I was still on too high a dose of gabapentin to take them but because they haven't had much of an effect I have been reducing the dosage slowly. It's important to come off these tablets slowly because of the effect that they have on the neural system.

For the past 3 weeks now I've been able to take both medications. I have really noticed a difference since starting on them. My pain levels have been much more manageable, which is a big relief. I have gone from needing 8 tramadol and 8 paracetemol to generally needing only 4 of each a day. One side effect I noticed was that it was taking ages for me to do a wee (sorry for that) and I hate slight pain in my lower back. But that has faded now. The doctor said it was likely to be a reaction to the combination of the amitriptiline and tramadol. It took me a while to notice because I thought it might have just been me not focusing haha. But more noticeable and fantastic is how much easier I'm moving about. It's much more fluid and not as stacatto as it was and the best part is each step is not pure agony. I'm managing to move around the house more and although I try not to go up the stairs too many times I am managing to get down stairs everyday. I started off with taking 10mg of amitriptiline at nighttime. Or what again for a normal healthy person would be called 'before bed.' Haha. Anyhow whether it's the tablets or not there has certainly been an improvement. Last Thursday I was even able to walk from just outside the doctors surgery to the waiting room and back, which is around 20 meters each way. This felt like a major achievement, however ridiculous that may sound to some people. But to me who had been bed bound and could just about shuffle over to the commode it was a moment I was grateful for. I felt confident that I could do it too, judging by how easily I was moving around the house and it not taken ages to get from A to B.

However because this was quite the achievement it has meant that I have been suffering with post exertional malaise since. Generally feeling more fatigued and achey. In a way it's nice to feel that way for a reason. Okay, all be it a very small reason. I don't think I will ever grow used to simply walking to and from the doctors waiting room being enough to make me suffer. But of course that is that type A personality of mine rearing its head. I was rather disappointed that I couldn't go to a family get together on Saturday, despite resting on Friday and during most of Saturday. There were just not enough spoons in the stamina drawer unfortunately. I did feel quite disappointed at not being able to go but I really did not feel up to it and the relief of being able to have walked some had improved my mood. My doctor was made up to see that I could walk into his office. Definitely a clear sign that things were looking up and because of this we have upped the dosage of the amitritiline to 2 tablets before bed. So here's hoping for more of an improvement. Now that I have achieved that I am desperate to be able to do more. Call me greedy but it is such a small ask.

In other news I had my assessment interview for Personal Independance Payment on Friday. Luckily I was able to stay awake long enough for it. I was feeling very tired after the mamouth walk to the doctors office. But I feel it went well. I got a chance to put across my side of how the condition effects me. She asked me what constitutes a normal day, to which I said that there is really no such thing. Everyday is so different. Every hour can be different. Sometimes things happen spontaneously, where you think I'm feeling quite strong and comfortable right now let's go out for half an hour. Others you can plan and organise to the nth degree and rest up for days but they still don't happen. It can all heavily depend on my sleeping pattern at that time. Just in the past week alone I have been up all night then asleep all day, I've had fragmented sleep and been sleeping for long amounts of time.  But I just tried to put across the things that I can and can't do. Things I need help with etc. How it can limit where I go and who I see. She seemed really nice and understanding and encouraging me to have my say, whilst also listening to my Mum's side. But of course it's not up to her to make any decisions. So we'll have to wait and see. I've also sent in some of my blog posts for them to take into consideration and get more of an idea of how the condition manifests itself.

So there you have it for now. Hopefully I'll be up to getting my next post sorted soon but health is always the more important thing. I hate that statement but it's true. Let's hope the higher dose of amitriptiline has yet more of a good effect and I can try and not catch any bad colds or bugs that seem to be rife at the moment.