Wednesday, 31 July 2013
Monday, 29 July 2013
Wow my last 2 posts have been pretty depressing haven't they? But I strive to be honest and present a true picture of life with a chronic illness. Like I have said in the past we the sufferers are the only ones that can really tell you what it's like. We may not have a medical degree but we know our own bodies. I read some great advice today in a great blog laughingfrommysickbed.blogspot.com by a lovely lady named Irene who has taken a place in my heart so I hope she doesn't mind me paraphrasing (brain mush). She said that no doctor or specialist no matter how well researched they are will ever tell you to just listen to what your body is saying. Never mind graded excercise programmes or pacing if your body doesn't want to play ball it won't and if you don't listen to that then you have an all mighty battle on your hands.
Remember my post about physiology? About our natural instincts that we relied upon to survive. This is the way we are programmed so why do we so often ignore it? If why body says it wants to sleep for 20 hours then I figure that's what it wants. No, it probably isn't good but who says? Of course we should always try new things that are suggested to us. Hence my series of posts on what I learnt at ME/CFS clinic. We do of course want at least some relief and wish for a cure. Oh how lovely that would be! How many times have you gone into an appointment with raised hopes? Hoping that what they say, suggest, prescribe, inject, take out etc etc will solve all your problems. Okay, you probably know that it won't. Nothing is ever that simple but still there is that hope, that instinct to survive.
Today has been a completely bed bound day. I just wish someone would have told my bladder. Just sliding onto the commode when it was right beside my bed was worthy of some very inventive curse words. The day my elbows give out I'll surely be lost. They are the key to getting up. I have to say it's totally scared me. Doing very little gives your brain plenty of time to well think. To get carried away. To imagine that this will forever be your life. That you will always be weeing in a bucket. Oh shut up brain, you naughty sod. Don't try and bring me down too. Yes, I'm scared but there's always hope.
I guess it doesn't help that I look around my room and it's just a tip. It is clean though just untidy. Clothes are piled up (still some from Greece oops). I have various bits of nightware all around my bed because my tempretaure is tempremental (ooo never realised the connection with those words, dippy me). There's a new picture, well it's not a picture probably more art I don't know what it would be called but I like it and wanted something new to look at. Anyway whatever it is needs hanging but there's never a good time. I have loads of unopened letters and bills in my side drawer. Thank goodness I know what they are and for direct debits. And my calendar is still on March. However does it matter?
Like I said my room is clean. My bills are paid. No it's probably not conducive for good sleep hygiene. But these are such small things that in the grand perspective do not matter. Okay they could be sorted on good days and when I can I will, bit by bit. But on my good days I want to use my spoons to better my mood. To make memories however small. To laugh. Get downstairs. Socialise. Get out if I can. These will be the things I remember later on in life. Not whether my room was neat and tidy.
So to sum up the last few days have been testing in every which way. I think the neighbours might have thought Dexter was here. But let them. But you know what I still have fight in me. Even if it's just to get the right pain killers. And I shall heed my own words and many before me that laughter is the best medicine as is rest. Will have to research who coined that phrase.
Sunday, 28 July 2013
So as the title suggests over the last few days and definitely the last 12 hours I have been inventing a fair few new swear words to express the extent of the pain that is hijacking my body. I've screamed. I've cried. I've sworn. I've taken all my tablets (gabapentin) and extra pain killers (cocodomol and even the dreaded ibruprofen). I have a hot water bottle on my thighs and a tens machine pulsing away on my back and yet I still am in pain. I don't want to be touched but need help and just wiggling my toes sets me off into a diatribe of ugly curse words. I phoned the out of hours doctors but all they could say was that there wasn't much they could do. Cue more crying and curse words.
But today wasn't supposed to be like this at all. Well any day is not supposed to be like this according to society and I would very much love that. But you see today I was supposed to be going to Turkey on holiday with friends. When it was booked my ME was much more fatigue dominated. Not that it isn't still but now there is the all consuming pain that has left me wheelchair bound too. Yes overwhelming fatigue is debilitating enough but I could still care for myself a lot more. So after going to Greece and needing a wheelchair to get onto the plane being able to go to Turkey has been a doubt in my mind.
I looked at the resort and to be fair it did look very wheelchair friendly with lots of ramps and flat areas but it was far from the town, which could only be accessed by bus. Something tells me Turkish buses wouldn't be very wheelchair friendly. Nevermind taking the bus twice a day for 2 weeks just to be able to go eat dinner. Plus if I feel asleep during my meal it would have been a nightmare to get me back.
But more than the travelling and the wheelchair logistics it was about needing to be cared for a lot more. As in personal care. Would my friends really be comfortable helping me bathe, washing my hair, get dressed or even helping me on and off the toilet when needed? Not really. Nor would I be comfortable with them doing it. Sometimes it frustrates me having my Mum do it. What's more this was their holiday. They deserved to we having fun and going out exploring not looking after me. I couldn't put that pressure on them. The guilt that comes with putting others out just by me having this condition is already enough without ruining a much needed holiday. My friend even admitted that she would be a rubbish carer. So that was that one out of the window.
Yes I did manage to get to Greece not so long ago but like I have said I know the place, I know the people. I have fallen asleep in the restaurant (right next door) and they don't get offended. They help me out and then ask how I am the next day. They don't try and ply me with alcohol because they know it will make me more ill. Even when I'm over here I get messages of support and well wishes. What's more I go with my parents. So they are there to care for me. Yes I want them to not have to and to be able to enjoy their holiday but at least the pressure is off a bit because they don't have to work or cook or clean.
Some people will think it's strange goinh on holiday with your parents in your late twenties but that's the way it is. It can do us good as a family. Especially as we have become so reliant on one another. I'm just grateful that I can go away with them when my health permits. That we have a great relationship. At the end of the day if I was well I probably wouldn't be going on holiday with them or maybe not at all as I'd be out there working, working working.
Anyhow enough blogging distraction techniques. I am going to try and get some sleep. Think it will be the only way to really shut off this pain.
Friday, 26 July 2013
But there lies the crux of the matter. When I am that bad I'm lucky to be able to move around the house let alone to get out, even with a wheelchair. Today I was in so much pain that I couldn't even face getting up to the doctors. Sounds daft right being too ill to go to the person who is supposed to help you get better. But when your whole body is whracked with pain and you're feeling pretty delirious with it you're going nowhere. However on those days that we can get out and maybe socialise Bernhard again says 'if they see you doing anything "normal" they assume we're 100% well.' They can not fathom that we 'came from the bed and will collapse on it after,' even after something as simple to them as going out for coffee. It is as though we are expected to be either on or off, sick or not, okay or not okay. You are out so therefore you must be better. Many a time I have heard those phrases Bernhard references 'hit the gym' and 'stay in shape' and I have reacted poorly. But can you blame me? They knew full well that I was no slacker and was obsessed with working. Obviously now personally using a wheelchair does dispel that myth somewhat but there have been plenty of times where people have thought me better, even when they know I use a wheelchair.
They can little understand the consistency of a chronic illness, how it never really goes away. How it dominates everything. It is not like having a cold, then recovering and then catching another. You have it ALL THE TIME. It just varies in its severity, like the volume button on a stereo, it can increase and it can decrease but often it's not you controlling the dial. As much as it pains me to say it ME is at the centre of my world, everything revolves around it. It has to in order for me to try and tackle it. But that is not to say that I give in to ME. I do not want my friends and family to only think about ME when the think about me. There is a person behind all this pain and fatigue. A person that still wants to love and laugh and care as much as she did before. I want to socialise, and spend lots of time with my family. I want to enjoy meeting new people and learning new things. I want to enjoy seeing my nephews grow up, even though they cannot rugby tackle me anymore. I may not be able to be there physically as much as I would like but know that I will listen and do what I can, when I can. Do not stay away because I have enough to deal with. Yes I definitely do. But I don't want to be defined by my illness. It just may have to be when I am not having an all out flare.
Yesterday I was in all mighty pain even after my painkillers and usual extra methods (heat, electrolyte drink, massage) so in a bid to distract myself I asked my Mum to take me out. Oh bleep bleep bleep it was painful but to the outside world, maybe even to my Mum at times I'm sure this wouldn't have come across. Yes again I was in my wheelchair but I was trying my best to just appear okay. To not give in to the pain that was gripping my body and turning my stomach. I had found myself trying to 'get on with it'. Maybe a small part of me had thought "well, this is what life is going to be like" and to literally grin and bare it. To not let on how much pain I was in, feeling miserable and guilty and dragging other people down with me too. I'm sure they've had enough of me whingeing about how much pain I am in. But trying to not show the extent of your pain for a few days is tough. Trying to keep it at the back of your mind when your body is fatigued and you can do little to distract yourself is nigh on impossible. Today I have been in a great deal of pain (I'm writing this at 3am oops, so maybe I mean yesterday). To the point where it took me ages just to get my phone from the side of my bed to text for help. The amount of times I had deliriously wondered why I was trying to use my hand as a keypad is beyond me. There was no question of grinning and bareing it. Then again, I did not brake down in floods of tears either as I have felt like doing. I simply did not have the energy to. The pain had my eye balls rolling and my concentration non existent. Everything was just pain.
Life with an invisible illness is tough for both sufferers and their carers. It's hard to know what to do. Do you go out and try to grasp some kind of normalcy? Or stay at home and be 'ill'. I guess the answer lies in the balance. Do what you can when you can. Surround yourself with people that understand when you are lying ill in bed or out having a coffee. Sometimes we do have it both ways but usually our lows outweigh our highs and those lows can certainly make us appreciate the highs all the more.
Wednesday, 24 July 2013
From the image you will also notice that there is writing in both blue and red. This is intentional- there was no pen crisis. This is because what we needed to do was to write in blue ink if were experiencing a bareable level of symptoms, that you have felt okay or hopefully good for those two hours. Or to use red ink if those two hours were awful and dominated by bad symptoms. By doing this every day too it was a way of looking for patterns. Do you mostly have red mornings and more blue afternoons or vice versa? Or a blue day then a red day? It can also help you appreciate that for 2 hours or so that day it perhaps wasn't too bad. Not get to the end of the day and say that it was all completely terrible, because that is how you have been feeling for most of the day.Yes, 2 hours can be a long time and you can very easily go from feeling okay to screaming in pain in that time. If not many times during that time but you can use the colour ink that relates most of those two hours. Let's face it if you had to record things more than every two hours that may get too annoying. Every two hours can be annoying enough.
You will also see that in each space there are smaller boxes with the letter M, E, P and numbers in them. The letters stand for 'mental', 'emotional' and 'physical' and relate to the amount of effort each activity has taken. 1 being the lowest number of effort and 10 being the highest. So let's say that you had been reading then generally you mental effort number will be higher and depending on what you are reading then your emotional effort number could be higher. For example a thriller novel or a weepie. Obviously depending on your symptoms and mood your numbers will fluctuate. So for example if you are reading a thriller whilst being in a lot of pain then your overall numbers are going to be high. If you are in a lot of pain and have been doing something physical then your physical number will be really high, but it will also take it's toll emotionally and mentally too. Of course the key is to when you're feeling in pain to lower your physical activity but that probably comes naturally anyway. But also to not over exert yourself emotionally and mentally too. Of course generally M.E sufferers will generally expell more effort than non sufferers as it is.
But overall these numbers serve to find out what your overall numbers are for each day. So at the end of the day (if you're not too tired) to add up the numbers from the mental, emotional and physical columns and then add them all together for your overall total for the day. This number alongside the colour ink helps you to see how much effort that you can use up without going into a flare, suffer from post exertional malaise or can make you feel not too bad. For example if you feel terrible at the end of the day or experience post exertional malaise, which you would know from the use of red ink and of course because you feel absolutely shocking (don't need a pen to tell you that) then you have probably used up too much effort and can therefore see where you can cut down on your numbers or use up less spoons as it were. So the aim is to find that balance of numbers that allow you to have a completely blue week, where you don't feel too bad. Of course ME is changeable and at times you will have to lower your numbers to coincide with your symptoms. Right now my numbers would be much lower than from the example diary above, as I do very little due to the change in my condition, certainly physically.
So that is one way of keeping track of how much energy you are using. How many spoons you roughly have at your disposal every day. Likewise you can do it as more of a list. Whatever is best for you? It's certainly good for people in the early stages of ME, when you are so confused and wondering how you can no longer do what you used to. Although it certainly can seem like a lot to have to fill it in every two hours. Lately I have become rubbish at charting my day (other than blogging, that is) but I guess after a while it becomes instinctive. You know how much your mind and body can take. As much as it frustrates the heck out of you.
Tuesday, 23 July 2013
Anyway this week there have been a few situations where I have wanted to be there for people and it has been my natural instinct to do so. But it has really taken it's toll on me. Making me more fatigued and achey and my brain has gone haywire, my recall of words or conveying what I want to say has been shockingly. I am not bitching or saying that I wish I hadn't been there, because that goes against my nature. I just mean that investing so much emotion and also recieving it and processing it is taking it's toll on this already shell shocked body and mind. The main incident I really wouldn't not have said anything, I simply had too. I felt that I had something to offer them in their time of need, like I say even if it was just an ear to listen. But I could not leave it, wouldn't want to, never even crossed my mind to. Regardless of the after effects.
However I know somethings I should probably not get so agitated or worked up by. Things that have no consequence really to my everyday life. The thing is though in some ways having M.E has made me a bit hard. I am experiencing a life that should be alien to me and my family but that every day, every hour, every minute it affects my life and theirs in many unpleasant ways. It's there all the time and to say that somedays I absolutely hate it would be an understatement. My whole outlook on life has changed. I should just let somethings pass. But in growing slightly harder I have also found a voice that wants to be heard. Hey I'm blooging, aren't I? I guess sometimes I can just get frustrated. So many people do not realise what they have. Life is just one big social media update without them actually experiencing the lives that they are priveledged to have. Maybe I say this because of what is happening to me because of all I've been through but all the same we are certainly living in a world of what's next, rather than what do I have. Finding a stronger voice though is no bad thing either, I probably could have done with being a bit tougher. Learning to say no to things. Not being afraid of others opinions. But of course if you open your mouth there are going to be people that don't like what you say. Leading to more feelings of agitation. Okay I'm not taking what they say to heart but the confrontation again takes more out of me than is good for me.
So I guess it's good to find a voice and I don't think I will ever stop being caring but learning to fight the good fight is probably a good lesson to learn. Choosing more carefully when to speak up and when not to. When to use a spoon and when not to waste one. Then again I guess you never know how the other person is going to react. But I won't upset myself too much over trivial things. I don't have the energy for that and I can quite easily shut it off now. Us M.E sufferers have enought to contend with. So if I'm battling for you and offering my spoons and ears know that you are dear to me. But you know what I know who I am and I like who I am.
Saturday, 20 July 2013
Wow, I have had over a thousand views now on my blog and I'm a bit overwhelmed, but in a good way. It has even reached as far as Australia and Thailand (okay the last one is my cousin, but still). I started this blog for me mostly, to be able to express myself and to be able to track my own progress. To be appreciative of every day. Yes I can write a diary but that can be painful. Over the past few months though I have fell in love with blogging and enjoying raising some awareness of this horrid condition. Even if it is just among my family members. Just a note on that. Even those closest to you can know completely what it's like. Yes, they see in you agony and have to help you wash and dress or interpret your sentences when your brain is in hibernation. Or you can explain the spoon theory to them to help them understand how you have to think about every little thing. But, they can never truly know and that is of course a good thing.
As I said in my first post this is a condition with very little answers and by writing candidly about my own experiences it was also a way to help other sufferers not feel so alone. To know that what was happening to them was also happening to others and likewise for myself. I wanted to reach out and learn from other bloggers and sufferers. To see what works for them or for them to see what helps me.
I have received some fantastic feedback and comments from other bloggers that could relate to my experience. Friends have been in touch to say that they were sorry I had been suffering so much and they did not know the full extent but by reading my blog they felt grateful for what they had. As I have said in the past I could be jealous of my friends going on to have great careers and enjoying their lives but that's not me. I am really happy for them and want them to do well. I don't want them to shy away from telling me about their work because I lost out. I want them to enjoy having their health and to be making the most of the careers they worked so hard to get. The people I was at college with honestly were so hard working and I am made up for them living their dreams. Yes I wish I was out there doing the same but I cannot begrudge them. Life is not a dress rehearsal as the say.
One friend said she was unsure about messaging me to say that she enjoyed my blog and that she was impressed with how was dealing with the condition because she did not want to sound patronising. To me it was anything but. To know that someone else was inspired to enjoy their life and grateful for what they had was fantastic news. I cried tears of joy. As I said it, my family have also learnt a lot through my blog. This too was a shock as I thought they knew all there was. Especially my parents as they were living it with me. Handing me pain killers. Lifting me off the loo. But as my Mum said I'm the only one that's in my head. So it has been interesting for them too. Means I have to edit some stuff though haha. No of course I don't. I will continue to write as candidly as possible and share my experiences.
So thank you for all the great responses. Don't worry it's ok to enjoy a blog about health. Even at me getting stuck on cobble stones. I want this blog to be a good thing. That raises awareness but also shows that people with chronic illnesses are also 'people' and we can even laugh at ourselves. I hope you will all continue to enjoy my posts and if you learn something then that's fantastic.
Here's to many more posts.
Wednesday, 17 July 2013
Tuesday, 16 July 2013
Monday, 15 July 2013
Yesterday was a tough day. Lots of symptoms all vying for attention and not responding to any treatment in the form of pain killers, heat or massage, which left me a little miserable. I did not wake up until 2pm, having only just managed to prise my eyes open for long enough for my Mum to give me my neurontin at 9am and too be honest at 2pm I was all set to roll over and go back to sleep again. But it was time for another tablet and to make sure I ate, to help my pain and fatigue levels and also it was a beautiful sunny day. Yes Newsflash it is still hot in the UK!
As it has been so nice all week my need to be as active (well you know what I mean) or perhaps I should say that my cabin fever has not been too bad as I have been putting in the effort and somedays it has been an effort to get downstairs and to sit in the sun. To try and let the sun heal some of the aches and pains as it often does on holiday and work its psychological wonders. That is predominantly what my week has consisted of, especially this weekend. Me and Mum have just enjoyed lying out in the sun, relaxing. Well except for when the neighbour decides to get out his circular saw to cut paving stones and then hammer, hammer hammer them into place and people feel the need to share their dreadful music tastes to the whole village. But I can honestly say that I have only spent my days sunbathing, resting, reading and blogging and watching tv of an evening. I learnt my lesson about bringing a few sets of clothes etc downstairs with me before I went out so I didn't have to keep traipsing up the stairs earlier in the week. I have been content too, to do this little, which is an achievement. However yesterday everything ached or burnt with pain (not sunburn, luckily) to the point where it turns your stomach and you start breathing like you're in labour. I managed to get outside around 3pm but soon experienced the most strange of symptoms I could feel the heat of the sun on my skin but I had the shivers and goosebumps. It was sheer madness and definitely something very strange. Even at 2am when it was still around 17 degrees I could stand to have a hot water bottle to soothe my aches and pains.
It really did annoy me a bit. Not so much the new symptoms, or even sleeping till 2pm but the fact that I ached like I had been hit by a bus when I had done so little. I know it happenns, I have blogged about it happenning but I had been being good. I had consciously been doing less and relaxing and not multitasking and was coping. I had even got a bit more of a routine going. But then to still be hit by screming pain to the point of not being able to brush my teeth by myself and having to get my Mum to cut up my dinner for me was a bitter pill to swallow. I felt like screaming "honestly, what more can I do?" But that is the nature of the beast, sometimes it doesn't matter how good you are at the end of the day you still have a chronic illness and as Miseandino said you can never forget about it. It is very easy to have good days and sing Hallelujia from the roof tops but push too far and you're back to suffering but this time as I say I thought I had been being good. Perhaps it is a delayed reaction to to last weekend or last Tuesdays few hours in Chester. All I know is that it has really bit me in the bum. You would think that each flare or bad day gets easier to deal with as time with the condition progresses but actually it still feels as fresh as ever. It is not opening up a new wound but making a whole new cut. Yes your knowledge can improve of how to cope with it and with the condition as a whole but each grasp of pain or new symptom is consuming and frustrating. Especially when like I say you thought you had been being good.
Sunday, 14 July 2013
I know some people might read my blog and think " Oh, look she's talking about going shopping and going on holiday, so maybe she's not all that ill." Well I like to think that I write or moan and whinge about hard times too and just how much those good moments need orchestrating and how much they can really take there toll on fatigue and pain levels. When I say I'm going on holiday I hardly move more than 100m from my bed and am lucky I know the place and people well to feel comfortable and they are very understanding. It is not code for a club 18-30 full on party holiday. And when I say I'm shopping it generally means 'to get me out of the house' or to get something I need. Definitely never more than 2 hours.
So today I wanted to give you more of an insight into what it's actually like to live with a chronic illness. Away from any emotions, or lists of symptoms but what it is actually like to 'deal' with on a daily basis. In essence apart from the obvious or not so obvious to some how does living with a chronic illness differ from living without one? To benormal so to speak. This brings me on to finally talking about those spoons I mentioned. Or to be more exact about Christine Mierandino's spoon theory because to be frank it is a great description.
To give you some backround Miserandino suffers from Lupus and the spoon theory was born when out with a friend at diner her friend asked what it was like to live with. She knew all the ins and outs and had supported her for many years but what it was like to 'not physically but what it was like to be me, to be sick.' www.butyoudontlooksick.com At first she was at a loss, yes she could reel off symptoms but she thought 'how do I answer a question I never was able to answer for myself? How do I explain every detail of every day being affected and give the emotions a sick person goes through with clarity.'
What happenned next was that she proceeded to collect as many spoons as she could, probably looking and feeling like a mad woman and placed them in her friends hands. She 'explained that the difference in being sick and being healthy is having to make choices or to consiously think about things when the rest of the world doesn't have to. The healthy have a life without choices, a gift most people take for granted. Most people start the day with unlimted amount of possibilities and energy to do whatever they desire, especially young people for the most part, they do not need to worry about the effects of their actions.' Remember the post exertional malaise I was talking about it can strike after the smallest of actions. Today I am aching a lot from just sunbathing and writing yesterday. It makes life with a chronic illness a constant battle with your conscience about whether you shoud do something or not. There is no just 'popping' anywhere or acting on the spur of the moment. There is a lot of thinking and planning which in itself is drainng not to mention be a drain on your enjoyment of life. Take for example having to choose between using a commode or whether you have enough energy to walk to the bathroom. Whether or not you get dressed that day or shower. All of which are questions that we ask ourselves daily. Sometimes when it comes to big decisions like going somewhere with family or friends and rule that it's just too much for you, you can run the risk of upsetting or alienating others or being known as a let down.
Let me use an example. Last weekend I went to my cousins for dinner, however firstly we were supposed to play a muder mystery game. Okay, it would have been played around a table but it would have required a lot more brain power etc. What I had to make them see was that to do that was just energy that I did not have. To be able to get there and enjoy dinner and laughter was going to take up a lot of energy as it was. Just the 40 minute car journey would be a lot. But it was something that I was determined to try to do and luckily on the day that I had more energy. Luckily they understood about the game and we did have a great time but I definitely felt that seemingly simple event had took a lot out of me. Christine Miserandino explains that if you know a big event is coming up then you need to also plan a 'scheduled crash landing' www.bbc.co.uk/news/blogs-ouch-22972767 this is a 'rest period to get over non standard events such as weddings or hospital visits.' However of course it also depends on how much energy that you have on that day and how much you do on that day.
The BBC recently blogged about the spoon theory on the link above and say that spoons have become a 'quirky' way of measuring energy for sufferers of a chronic illness. For each decision we make it is like 'deciding in advance which tasks are worth "sacrificing a spoon" for.' But back to Christine's story. So she's handed her friend the spoons. In this instance she had 12 spoons but that's just a random number not scientific. She explains that by using the spoons she 'wanted something for her to hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else... being in control.'
She then asked her friends to go through the activities of her day and her friend launched straight into an active diatribe. Christine soon asked her to slow down and realise that you can't just wake up and get straight into your day when you have a chronic illness and for many others too. There are times that you have to drag yourself out of bed one limb at a time. Having a wash might cost you one spoon or a shower maybe two spoons with having to stretch a lot more. Then to dry your hair would cost you another spoon. So that's around 3 or 4 spoons and you're not even downstairs yet. If you cook a breakfast that is possibly two spoons or if you have cereal or something you don't have to cook that could be one spoon. Then of course there is going out or going to work. Driving will take up a spoon and who knows what you're going to face at work. A more productive day or dealing with lots of others will certainly use up more spoons than a quieter one. Somethings are beyond your control. Then of course there is what to do after work. How many spoons do you have left and what is the most effective way to use them? Fortunately or not I don't have to contemplate these things at the moment. As much as I really would love to. I can't even imagine it. Or in other terms I do not have enough spoons. Right now I just about have enough spoons to get around the house, to see family when I can and the occassional couple of hours out. No that's not everyday. It's about realising that things aren't as simple as 'doing something' or 'getting something done' that there are a 'hundred jobs in one.' Of course everyday is different; different circumstances; different symptoms as Christine explains 'some days I have more spoons than most. But I can never make it go away and I can't forget about it; I always have to think about it.' There is a way 'sometimes you can borrow against tomorrow's "spoons" but just think how hard tomorrow will be with less "spoons".' You are already putring yourself at an advantage and who knows what tomorrow could bring through symptoms or circumstance.
By using this method Miserandino really made her friend see the true all consumimg scope of having a chronic illness. It actually made her quite emotional and made her feel sorry for her. As they left the cafe Miserandino pulled a spoon from her pocket (what a thief) and said that it is always good to try and keep a spoon in reserve too. Just in case. No one knows what is ahead of us. I have to agree that this is a great description, no matter how whacky it sounds. It has really caught on too and is widely used in chronic illness forums and communities. With many people calling themselves 'spoonies'. Well I did always want to be Tina T Spoon from Button Moon. Tweeters can use #spoonie to see tweets from others and connect with other sufferers.
So there you have it the spoon theory. Basically it's about assessing your energy levels to see how many 'spoons' you have that day or moment and making lots of decisions about how best to 'sacrifice a spoon' that is going to impact your health and energy levels afterwards. She also jokes that when she can spend time with friends and family 'that they should feel special when I spend time with them because they have one of my spoons' or maybe more. In future blog posts I'll talk about how to learn to pace yourself and how to sacrifice those spoons in a way that is best for each individual. I hope that this post has enlightened you. It enlightened me and I have a chronic illness. But that is what it's like to have a chronic illness, that is what it's like to be me.
Thursday, 11 July 2013
So I've had a wheelchair for a short while now to help me get out of the house. It's been a lot to get used to but also makes you realise how much you can take for granted as an 'able' bodied person. I really do hate those terms. Or even things you take for granted even with M.E but could get about a bit on very good days. Now everything is like a military operation. Everything needs to be more planned, more organized. I am naturally a planner and love organising but when it comes to just going to the shops or visiting family it would be more a case of just go (well not on my own obviously with having M.E). I used to love living in a city where everything was close by. I didn't even needy my car.
Last week my Mum and Dad were going out to dinner, so I thought that maybe me and my sister could get out and as it would be a Wednesday maybe we could go to the cinema. But of course it's not that simple. First of all there was deciding which cinema to go to. Out of two options both had too much walking to do to even contemplate not using the chair and then the queues would be big with it being a Wednesday and I can't stand for long either. Not to mentioned the time spent getting pick n mix. I looked on the cinemas website and they said that even from the drop off point there was a 50m walk and there could be a further 150m more to walk inside the cinema. That would be like a marathon. There would be no way of going without my chair. So I looked at some more of their access information. There were some designated wheelchair spaces in the cinemas but they are far too close to the screen, which would be both an annoying pain in the neck and a literal one. I didn't really need any more aches and pains especially at the extortionate cost of cinema tickets nowadays. The other cinema did have better seating but not film times that suited us. There is always something isn't there? Of course what I hadn't thought of was that we obviously wouldn't be going out in Mum and Dad's car, we would be going in my sisters. What a thing to forget. I think I just assumed that it would fit but their cars are very different. So we had to do a test to see but unfortunately it didn't fit. So there went that idea. In the end I wasn't very well on that day anyway so I couldn't get out. It certainly did get me thinking about how complex things are when you need a wheelchair to get around.
At the weekend as I mentioned I went to my cousins for dinner. She lives in an upstairs flat but it is attached to a barn with a ramp up so luckily I could get in. Well other than the bit of wood across the door, so I had to get out to manage that. I did get left outside for a while too whilst they were getting drinks but that was okay as it was a lovely day. My legs were quite painful that night though as my legs were folded with sitting down for a long period of time. They don't like that. I usually have to sit with them outstretched but of course we were having a good laugh around the table and I think my cousin had fun racing me around the carpark.
The other day my sister had a day off so we were pretty keen to get out, which sparked lots of military style preperations. We didn't want a repeat of last week. So our first manouvere wad to ask Dad if he could give us a lift. Hehe sounds funny coming from 2 grown women but needs must when my chair doesn't fit in my sisters car. Then I needed to see how accessible the buses and shops were. Yes shopping again! I have travelled on these buses and visited these shops many times but of course you're not thinking "oh, could I do this in a wheelchair." It really does open your eyes. In the process of researching I found some great websites that listed numerous tourist attractions, hotels, transport, shops, cafes and restaurants etc that are accessible to wheelchairs for different towns and cities across the country. One of them was www.disabledholidaysinfo.org.uk. What a great resource. It really does help you see that although you need help to be mobile and require assistance that there are still things that you can do, if you are well enough.
Now for the tale of Lou and Andy's big adventure to Chester. These were our chosen nicknames for the day, based on the Little Britain characters. With going shopping of course I had ample opportunity to use Andy's catchphrase "I want that one". Firstly my Dad let us borrow the car, which relieved him of his taxi duty. We then went on the park and ride. My sister or should I call her Lou kept bumping me up small kerbs, which was terrifying as I kept thinking I was going to be thrown out of the wheelchair and land flat on my face. Don't worry they weren't massive just raised paving stones. If she could lift me up big kerbs then I would encourage her to train to be an Olympic weight lifter. Not that I am fat. We did find if we could get a good run up to them it was easier but I would still be catapulted. Getting onto the bus was interesting. Luckily there is a ramp that comes out of the step so getting onto the bus wasn't too challenging, just a bit of a squeeze. Getting into the wheelchair space though was errr painful as I got bumped all over the place. Much to the cringey shock and uncomfortable laughter of the other passengers. It always seems to be the feet. Fortunately though the bus driver was very helpful and showed us what to do. What surprised me was that you have to travel backwards, which scared me a bit and made me a bit naseous. I gripped the pole the whole of the 10 minute journey.
So we just about got there in one piece now the next challenge was negotiating the kerbs and drops on the roads and pavements. A wheelchair friendly map would be good. At one stage we got stuck on some cobbles and my wheels went haywire. Damn you Romans! I had to get out in the end whilst we got it off them. But it was pretty funny. In the shops wasn't too bad as I could generally propel myself about. Although the heavier the fabric basket on my knee became (oh Primark and your wares) the tougher it became to push myself around. Also reaching up for things was quite uncomfortable. So I needed some help. It was hilarious though when my sister nearly wheeled off with someone else.
Because there was a fair few people out in wheelchairs. I'm not sure whether I noticed it more with needing one myself but again it's good to see people out; showing the world that we don't have to hide away and nor should we feel that we have to. Afterall it has taken us a great deal of effort to get out and to be able to enjoy getting out is a big deal for us. Or it could have been that we drove through an old peoples residential area on a lovely summer day.
The rest of the day was much smoother. I incurred no bruises on the bus and we went and eat our lunch outside in a beer garden. Have to make the most of this weather. Yes dears Britain is having a heat wave! So our focus was more on enjoying the weather more than shopping. So I can't comment too much on other places but I'm sure I will in future posts.
Just as I had been more aware of others in wheelchairs, others were certainly aware of me. From the shy smiles from people that generally would not smile at you. Or wondering if it's okay to laugh when you get bashed about on the bus. Or got annoyed when like a sneaky mini in a car park people don't spot you when you're in between clothes rails, mwahhaha! Then there are others that could not do enough for you. Telling you what tills to use or path to take or asking whether you need help, which was all lovely.
So all in all it was a good day and I am extremely grateful to have a way of getting out. It is all a big learning curve and one that does not come easy. Like I have said there are websites that are catered to helping people with disabilities live as full a life as possible. But then there is always the trail and error factor and bruises and laughter that come with it.
Wednesday, 10 July 2013
Sleep, what a marvellous invention. It is just as important as water or food. I have even heard it said that you can survive much longer without food than you can without sleep. So what is so wonderful about it? Why do we need it? Well, when we sleep in particular when we are in deep sleep our bodies are actually hard at work, restoring and even healing. Resetting for the day ahead. Therefore our natural instincts when we are feeling particularly unwell is to sleep and that is our bodies way of fighting off any infections etc. Or think about patients that get put into induced comas when they are in critical conditions or after they have had big surgery. This is done to help promote the body to use its natural resources and heal alongside medical interventions. I have a friend that not long ago developed double pneumonia that went haywire and was put into an induced coma to help him to recover. Luckily this worked and he is now gradually getting back into working. However this was particularly difficult for everyone around him, it's very hard to come to terms with. They just had to keep thinking though that the more he slept the more he was recovering. So this is a good example of what sleep can do. We sleep in 90 minute cycles. Generally it takes around 20 minutes to drift into unconsciousness. During this time we may not feel as though we are going to sleep but our bodies are slowly winding down and relaxing. Then our sleep plateus and we become unconscious, less aware of our surroundings. Then something odd happens, our bodies although partly paralyzed (apart from people that have night terrors or sleep walkers) actually we are highly responsive. No we will not be easy to wake up but our bodies are busy restoring all our systems and muscles. As much as I hate to quote Wikipedia, it says on there that when we are asleep our 'vital signs indicate arousal and oxygen consumption by the brain is higher than when the sleeper is awake.' www.wikipedia.org/wiki/sleep Hence why induced comas can aid recovery. Then the process begins again but with less time needed to drift back into deep sleep and longer in restorative sleep and this happens over and over until we wake. Understanding the sleep cycle can help doctors to diagnose sleep problems especially where the sleeper has difficulty getting into deep sleep.
However what happens when people suffer from a lack of sleep? One night will not do any harm, although you will probably feel a bit rough throughout the day. But a constant lack of sleep can really play havoc with our bodies and make them out of tune. Conditions such as insomnia and sleep apnoea mean that the person gets very little deep sleep or restorative sleep as it is also known and as the name suggests that is the sleep that is needed to help our bodies to restore. Meaning that they can feel tired constantly and become unwell because their immune systems are weakend and more susceptible to illnesses. Therefore the quicker they can find cures the better for their long term health.
There was an article in the guardian www.guardian.co.uk/commentisfree that suggests that we are a nation in two minds about our sleep. On the one hand as our lives become busier or someone becomes more successful getting less sleep can often be a consequence of that. We stay later at work and start again early the next morning. Often to keep up appearances but often it is because we feel we need to work that long. But the later we work means the longer it takes for us to wind down and perhaps do other jobs around the house. Thus our sleep becomes affected. On the other hand though we are drilled about how getting enough sleep, around 8 hours a night, is what we need to maintain good health and help us looking youthful. Sleeping tablets sales are at an all time high. So we are getting mixed messages about what is good for us and balancing our lifestyle.
However there has been a lot of research done as mentioned in the above article about how we physiologically are not programmed to sleep for 8 hours in a block. This research shows that in Medieval times people would sleep in 2 blocks. They would go to sleep as the sun set, sleep for a few hours then wake, generally " for an hour or so, of quiet wakefulness, sometimes known as a "watch". This period was often used for prayer, or writing or sex, or even visiting the neighbours." This seems to have been quite common until the 1920s and seems to have been affected by street lights and also social events. Before hand the night had always been associated with danger and promiscuity but that all changed when events would go on later. The nighttime became a prime time to socialise as is still apparent today. So whilst 8 hours might be our optimum number of hours that we need to maintain a healthy lifestyle it is actually against our natural physiology to get it all in one go.
But let's face it we are all individuals and will sleep for different lengths of time that suit us and our lifestyles and will consequently change as we grow older. For example teenagers ideally need to sleep for 12 hours a night to be able function well and absorb more information yet as we grow older we need less sleep. The idea of having two blocks of sleep is an alien one and could be more complicated in today's society as unlike in past centuries couples now share a bedroom. You would not want to disturb everyone else in the house so again it is about finding what's right for you and if you do have difficulties with your sleep then finding a good doctor to help you solve it is a must before you become too unwell.
For many people wirh M.E their relationship with sleep can vary greatly. Either suffering from too much sleep or insomnia or both. Sometimes on subsequent days. Creating an inconsistent sleeping pattern that can push the body further off kilter. It is also important to remember that there is a difference between feeling tired or sleepy and feeling fatigued or in a state of post exertional malaise. As mentioned post exertional malaise occurs after activity but does not necessarily create feelings of tiredness. But both sleep and post exertional malaise are big factors in M.E.
I have days when I can sleep for 17 hours, or even more. There have been times when I have been asleep for a long period of time and then thought there is no way I will sleep tonight only to find myself sleeping most of the night too. I very rarely get less than 12 hours, either consequtive or in sections. That seems to be my baseline, which to be fair is better than when 17 hours daily was the norm. If I don't get that amount then I can feel really unwell, sickly, shaking and my speech becomes slurred. But on the other side I can also suffer from insomnia. Usually for a few days or more each month. Leading to yet more feelings of sickness and me trying to make up some sleeping hours during the day. Generally if I go longer than 12 hours of wakefulness then I start to really suffer. So as you can see it can be a real mixed bag and often a surprise which end of the spectrum your'e going to get. Sometimes you might even be lucky and get a "normal" nights sleep. Either way though there is very rarely that sense of feeling refreshed and alert that sleep should bring. Even when you get lots of it which I am prone to do. Most of the time my body craves sleep and I can do little to control it hence the falling asleep in odd places. I'm nursing a cricked neck right now from falling asleep sitting up. However it is just as unhealthy for people to oversleep (more than 8 hours). In my assessment for the clinic I was told that the longer we sleep past that the less effective sleep becomes. In essence undoing some of the hard work that the body has been hard at work doing and leaving you unrefreshed. It's a tough one because when I'm overwhelmingly tired there is no fighting it. Or if I try then I can feel unwell.
I have tried to get into a routine, going to bed at the same time each night and waking up at the same time in the mornings but never had much success. I can generally wake up at roughly the same time, which is a good sign but that's a consequence of a rumbly tummy and trying to time my medications evenly. Again it depends on the type of night I've had, whether insomnia has reared its ugly head or spent the night in terrible pain. Somethings I did learn though to help establish a sleep routine are:
* Good sleep hygiene. No not making sure you've had a wash first. But that your room should be as free from distractions as possible. By that I mean computers, clutter etc not partners. Although if you wish to send them to the couch then that's your perogative. I find this quite difficult because I tend to use distractions for when I'm trying not to focus on the pain and my room is fairly cluttered because I use the energy that I have on trying to get to the bathroom or downstairs than tidy. Got to get your priorities right.
* Bath, bottle bed- no I don't mean drink yourself to sleep, rather think of it as a baby's routine. Have a bubbly bath to help you to relax, then a warm milky drink (yak) and then go to bed. Basically it's about doing things that tell your brain it's time to sleep.
* No caffiene after 4pm (difficult when you've woken up at 4pm)
* No tv, computer, phone or anything stimulating on the senses including arguments 2 hours before bed. The back light on a light of our technology tricks the mind into thinking it's light outside and therefore physiologically not time to sleep. During the 2 hours before bed you should try to use red light such as a lamp, although of course that's difficult in Summer and thank goodness for sky plus.
* If you are not asleep within 20 minutes either move to another room (difficult if you struggle walking) or sit up and sit quietly until you feel yourself tired once more. Repeat if necessary. This again is to trigger that response that bed equals sleep.
Now here is the most difficult one for me although all of them are tough.
* Try not to sleep during the day! Or if you need to try to sleep as early as possible. Likewise only nap for 20 minutes.
As I said the latter is my weakness but something that I have tried and failed miserabley at. It is so difficult to stop yourself from sleeping when that's what your body is screaming for and can make you feel really panicky. I know that it's against nature and that I probably shouldn't but all I think of is what is best for me in that moment and that's what I find is the best way to deal with this condition. Each day is different, each hour is different, so the more that I can just go with the flow and live in the moment the better. Sorry nature.
Monday, 8 July 2013
But back to the point about having regrets and to marry in that quote. My honest answer is no, no I don't. I am who I am today because of everything that I have lived through, everything that I've took a deep breath and picked myself up by the bootstraps to do. That despite many health issues, grief and severe depression I still achieved what I wanted to. Despite some people saying that I couldn't. Despite my own head saying that I couldn't. I have said "no, there is more to life than this." It has made me see that if there's something that I wanted it was in my power to do it for myself. Life is for living and all that. Especially when you have been through rough times. I have tried to give everything that I had to what I chose to do and it's me that's done that. So not to blow my own trumpet but that's pretty amazing. I have achieved academically and seen places that I had dreamt of going. So no there are no regrets. M.E or not. That's courageous, that's determination and that is what is going to get me through this too. It is what I need. So it is not just about the things that I have done but how my personality has actually developed through all the rough times to help me through and let me fight for the good things. Surely that is no negative thing. Certainly it's difficult to remain positive all the time, who can? But I recognise that I have every right to feel down at times, to miss the things I've lost and had to give up. That's a normal feeling and I don't beat myself up about feeling that way. I just try to cope with it and talk about it before it all gets too much and spirals out of control. I dread to think what I would be like if I didn't have the motivation or strength of charachter or even just the sense of humour to get through this. Back at being too frightened to step out of my bedroom. Back to feeling the need to self harm. I don't want that ever again. I can't regret it, because it's a horrific all conuming illness that takes no prisoners. But I can be proud that every time I have a tough day of pain and fatigue, or have to stay at home because I'm too ill or can't plan something or frustratingly when I can't recall certain words or form a coherent sentence. I can be proud that I don't want to physically or emotionally punish myself. I can get angry and not even have harming thoughts and that to me shows how strong I can be. How much my personality is an advantage to me now more than ever. So, no there are no regrets.