Living Life, Within the Limits of Chronic Illness

Category: ME Awareness Page 1 of 13

Education and M.E.

I became unwell, with what was eventually diagnosed as M.E., in January 2005, when I was 12 years old. I had just completed my first term at secondary school and was enjoying making new friends, learning new subjects and even the independence of being able to walk to school on my own when illness struck.

To begin with the doctor couldn’t find anything wrong with me, and thought I was just trying to avoid school. The school were somewhat understanding in that they believed something wasn’t right with me; whether it was my health or I was being bullied they weren’t sure but they did believe something wasn’t right, they put in place measures so I spent the day in the ‘Special Educational Needs’ class room, where my work was sent to me so I could do it there, without having to walk round the school to all the classrooms.

Somewhere along the lines though, even that became too much. Whether it was before or after I was referred to the paediatrician I can’t remember. The paediatrician told me I had Post Viral Fatigue Syndrome and that I’d be better in a few weeks, in the meantime I should carry on going to school as normal. Well that didn’t happen, I wasn’t well enough for that. The school made a plan for me to go in for half days and even that plan failed. After another appointment with the paediatrician, who couldn’t understand why I wasn’t better, I was referred to a rheumatologist who eventually diagnosed me with M.E.

Somewhere along the lines the school asked my parents permission to write to my GP, which they then did, requesting something from him to say that he didn’t think I was fit enough for main stream school, and as a result they could then get the local integrated support service to provide me with home tuition so as I didn’t miss out on my education.

This was done and for the next 4 years I had tutors who came to the house for an hour each day, to begin with it was just the one tutor covering all the main subjects, then it became four tutors each covering different subjects. My concentration wasn’t always up to much, and many lessons would have rest breaks within that hour. Most were done either sitting propped up on the sofa, or even lying on the sofa. It wasn’t easy but I was learning.

As my GCSE options approached in 2007, the pressure began building. I must do at least 5 GCSEs, they said. English Language & Literature, Maths, Science and one of my choosing. I believe I chose Information Technology. From that point on there was pressure to do some of the lessons in the library at school, to do a lot more work in general, even though my energy levels were still very low, my pain levels quite high and I would get dizzy sitting on the sofa. I remember one particular lesson where I was so unwell lying on the sofa, that my tutor just read some of the book we were studying to me, and even then I think I dozed off! We definitely had to go over that bit of the book on the next lesson anyway!

Eventually my parents noticed how down I was getting using all my available energy, and then some, on school work and lessons, and even the tutors at the integrated support service noticed too. Now I can’t remember if at first I dropped down to the 3 core subjects; I’m almost certain I did none of the work towards my chosen GCSE of I.T., but I do know eventually I was forced to drop down to just a single GCSE. That was a difficult decision to make, especially with all the emphasis put on GCSE exam results, but my health had to come first. Choosing which one to continue with was difficult; I loved maths, always had done, but in the end my parents and I decided that English would probably be more useful.

And so that’s what I did, alongside an AQA Unit Award in history, and an Adult Numeracy test, by the end of the 2008 academic year I sat my English Language GCSE at school, in a separate room, using a computer, and I believe I even had extra time given because of my health. It exhausted me.

I didn’t do half bad, given my health, and in August 2009 received my GCSE result of a B grade in English Language. Which surprised me.

The timeline of everything thus far is a little hazy; I was too unwell to really notice the passing of time in some ways. And I have to admit, looking back on that time there are bits my parents tell me about that I have no recollection of, so I apologise if any of this doesn’t seem in quite the right order – it may well be it isn’t! But the upshot of it all is that I missed out on almost all of my secondary school years, I was lucky that the school organised home tuition for me so I didn’t miss out on my education entirely.

After finishing school I had about a year of improved health, which saw me start a course at the local Adult Community Learning Centre. It was an hour or two a week, at first in the afternoons, and then later in the year it became an evening course. This taught me the basics in web design, and I thoroughly enjoyed it. It made me think about the future I wanted and what I would need to achieve it.

In August 2010 I decided it would be best if I did a degree through The Open University. I chose to do Computing and Information Technology as it was a field which had always interested me. And so in October 2010 I began my journey with the OU.

Now I’m not going to lie, doing a degree, even part-time and from home, is tough if you have moderate – severe M.E. You see, although when I began my degree in October 2010 I had mild – moderate M.E., I soon had relapse after relapse. I can’t say this was a result of studying, because there was A LOT of other factors going on in my life at the times the relapses happened, but obviously pushing through and studying while dealing with them wasn’t the wisest idea!

The first year I made the decision to overlap two modules, mostly through necessity as they were both in their final run and required for my degree! This wasn’t the wisest decision I ever made; although those two courses still only counted as part-time hours of study, studying two different modules at once, particularly with an illness such as M.E. is decidedly difficult. The fact one involved programming, which I loved, but took up a lot of time (and therefore energy) coding and debugging the code, didn’t help matters either.

After that first year I made the decision that I needed to diversify my degree choice; most of the computing modules involved programming, and I knew from the experience of my first module that, although I absolutely loved it, working code to a deadline while trying to pace myself, didn’t really work. I’d get too absorbed in trying to get it working that I’d spend longer than intended doing it and feel the effects quite severely for hours, if not days after! And so I changed my degree to that of Computing, I.T. and Business.

From then on, despite several more relapses, placing me back at the severe end of the M.E. scale, things were more manageable. The great thing about the Open University was that I could study where I wanted, when I wanted, wearing whatever I wanted. And so I could plan my day around studying; allocating those times I felt at my ‘best’ to studying, and then resting or doing less energy consuming activities at other times.

Over the seven years I spent doing my degree, from my third year I blogged about it keeping a record of the highs and lows. At times I’ve been brutally honest about my struggles, both with illness and the things life has thrown at me during those years, including the grief of losing family members, and how the support of my friends (both online and in real life) and family was absolutely invaluable, and if I’m totally honest, probably the only reason I managed to stick it out at one or two points! You can find all the blog posts under the category Open University if you’re interested in reading them, but I’ll provide a bit of a summary here including some of the things I did to make it manageable.

As I mentioned previously, one of the greatest things about studying with the Open University is that you can study anywhere, at whatever time suits you. Yes there were exceptions to that for things such as tutorials; mine were all either local or online, the online ones you could join in with from bed in your pyjamas if you wanted to as no one would see you! Obviously that wasn’t possible for the face-to-face ones though, although I did take a pillow to one or two of mine in order to minimise the pain from sitting in my wheelchair! Obviously there were also assignment deadlines to be met (although extensions were possible, I stubbornly refused to request any because I knew I’d just fall further behind and never catch up if I did!) and exams which had to be done at the set time.

For me I got myself into a routine fairly early on whereby I would often spend 2 hours either in the morning or afternoon, occasionally both, studying. Now I wouldn’t be studying continuously for those two hours, there would be rest breaks in there too. So my actual study time would be anything between 70 and 100 minutes out of those 120 minutes. And that would be my routine Monday through to Friday. Occasionally I’d study on the weekend too, if I had a deadline looming, and again that would be in a similar sort of way; a couple of hours with rest breaks when my concentration started disappearing or my hands started cramping etc. Most of my tutorials also fell on weekends, so I would attend those then too.

One of the most important things I did, right at the beginning of my degree, was notify The Open University about my illness. This meant in theory it would always be passed on to my tutors (which I believe it was), and they would support me the best way they could. I received comb-bound books which would lay flat because my hands often become so painful holding a book open is impossible. My tutors were always willing to offer extensions for my assignments, where it was possible for them to, and they were incredibly understanding if I couldn’t make it to a tutorial; they’d often email me the slides so I could catch up when I was able to.

This also meant I could sit my exams at home, write my answers on a laptop, and have rest breaks and extra time, providing I provided medical evidence that I needed it. This was a massive thing for me, especially as both of the exams I did fell at some of the most difficult times of those seven years. There is more details about the process I went through for getting the additional exam arrangements in this post here.

When it comes to managing tutorials, especially longer ones, I actually wrote an entire post about it here the main points of which are:

  • Make sure your tutor is aware of your illness and how it affects you. If possible be open about it on the forums too, so your peers at the tutorial also know a little about it. This means there’s less explaining to do on the day and they’ll be more understanding if you need to leave early or have a break!
  • If necessary go in your wheelchair; not only does it conserve energy but it also means you know you have the support you need to sit there for the tutorial. Take cushions as well if that helps!
  • Take a packed lunch, drink, snacks and spare painkillers. Most people tend to wander off to the cafe or wherever to get something to eat or drink, by staying in the room you can get a bit of quiet, rest time, while they do that. And having some spare painkillers means should you need them, you can take some and potentially avoid leaving early due to the pain.
  • Take some headphones for your smartphone with you. If you’re left alone during the break it can be nice to have some relaxing music to listen to rather than resting in silence however welcome that is. It also makes the time pass a little quicker!
  • Only take the minimum amount of books needed. The more books you have to carry and organise, the more energy you consume!

I found revising for exams one of the hardest parts of my time with the OU, namely because they always fell during particularly tough times in my life. But I did manage to find some things which helped me with the revision. You can find the full post here but I’ll put a summary below:

  • Make a plan, even a basic list of topics to cover which you can tick off can help alleviate some of the panic as the exam date draws nearer!
  • Look back through previous assignments; all your course work done throughout the module are essentially a wealth of revision notes already made. Make use of them.
  • Use earplugs, if you find noise a real distraction, I can’t recommend ear plugs enough. They allowed me to study and revise when I had very noisy neighbours for years while I was studying.
  • Take rests when you need them. It can be so easy to get caught up in the exam pressure, but it’s important to rest and not push through if you’re to retain the information you’re revising.
  • Listen to advice; sometimes friends and family really do know best!
  • Find the best method for you; for me just reading wasn’t enough, I needed to write things down again in order to absorb them. Do whatever makes it stick in your mind.
  • And whatever you do DON’T PANIC! You’ll be fine.

I went through many difficult times during my degree, in fact in my fourth year I had a complete crisis of confidence and came incredibly close to quitting entirely. My health had hit the worst it had been for years, and I’d lost my Gramps as I was preparing my final assignment for that module and approaching the revision period. I blogged about it in a post summarising my time with The Open University, without my friends and family I would never have got through that time, and I probably would have quit my degree.

There were also many times I questioned why I was doing it. Why was I working towards a degree, when my health was slowly (and sometimes not so slowly) declining, and in all likelihood I wouldn’t be able to put it to use at the end of it anyway? I actually wrote an entire blog post about the question of why, just so I could look back on it when I was feeling that way. It turned out there were many answers to that question but the main one was to prove to myself that my illness hadn’t taken away my brain entirely, even though at times it feels like it has!

It took me seven years of part-time study but I did eventually gain a degree despite having only a single GCSE to my name prior to that. It just goes to show that with sheer determination and a lot of support from the university itself as well as friends and family, an education can still be had. I’m not saying it’s easy, in fact it’s far from it, which is why I did my utmost to blog honestly about it during my time studying. I didn’t want to sugar coat it. But it does prove that no matter what life throws at you it is perfectly possibly to achieve your dreams, for me getting a degree was one of my dreams. I know at times I thought it was an impossible dream for me but despite some significant relapses, difficult times and almost giving up, I did it. And hopefully some of the things I learned along the way, which I’ve assembled together in this post, will help anyone else thinking of doing the same.

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What I mean when I say….

I’ve known for a while now that my answers to the question “How are you?” are very different to that of most people, particularly those who are healthy. They sound very much the same as you’d hear from anyone else, and yet they mean entirely different things.

You see, when you first have a chronic illness you’ll say you feel unwell still, but there comes a point where you get bored of saying it, people get sick of hearing that you’re still sick, and quite honestly you reach a point where you just accept this is how things are. And so you just start saying things which don’t provoke questions.

That’s not to say I mind when people question my answers; I’ve had family members ask me what “ok” actually means for me at the time they asked. And I am perfectly happy to try and answer that; it shows they are actually interested in hearing about some of what I’m dealing with at the time. I know other people would rather not know even the smallest bit of detail about what that actually means for whatever reason, and that is perfectly fine to. Part of the reason I now answer the way I do, is because even I have got bored of telling people the details of how I’m actually feeling; the pain I’m in, the fatigue I have etc. I can only imagine how bored they’d get hearing it. But if they ask, I will try and explain.

There seems to be a bit of a scale to my replies to that question everyone asks, and I rarely really know how to answer. So I thought I’d share and see if anyone else has a similar thing.

So, How are you?

I’m fine. Usually this means my pain levels are at the lowest level they ever are, that’s not to say there isn’t any pain, but it’s only a constant ache, nothing major. Fatigue is bearable and I can think quite clearly. The dizziness is manageable as well, it only happens if I’m foolish enough to stand completely still or move too quickly. I’m basically at the best I ever get these days.

I’ll be able to manage a few hours watching television, read a few chapters of a book providing it is quiet, go out in my wheelchair for a few hours or potter around the house doing some of the less physically demanding chores.

HOWEVER, if you have asked me repeatedly over the course of the day, how I am, and I am now beginning to get fed up of answering, it doesn’t matter how I’m feeling there is a chance I will just reply snappily that “I’m fine” when in some cases I clearly am not, I’m just fed up with being asked!

I’m ok. It’s an average day. The pain levels are manageable, not quite as low as they could be but they are not at a level that will prevent me from functioning. The same can be said about the fatigue. I can think reasonably clearly most of the time, with the odd patch of brain fog to make life interesting; you will most probably find me referring to a very obviously named object as “thingy” or “whatdoyoucallit” or some other such description as my brain just cannot think of the word I want and should really know. There is a slight dizzy feeling when sitting completely upright with my feet down, so you will usually find me slouched in a chair with my feet tucked under me. Standing up has to be done slowly otherwise the dizziness overwhelms me. But generally as long as I’m careful it is all manageable.

I’ll be able to watch an hour or so of television at a time, read a chapter of a book if it’s quiet, do a bit of knitting or crafting, or perhaps manage a short trip out in my wheelchair. I’ll need more rest breaks in between the shorter ‘spurts’ of activity than I would on a good day.

Not too bad. It’s a little worse than an average day. Either the pain is at a higher level which is making certain tasks more difficult, or the fatigue is worse meaning I need to rest more than usual. Following a conversation isn’t as easy as it usually is either so you may have to be careful you don’t speak too fast, and be patient while I come up with my reply. The dizziness may also be worse, with me seated in a reclined position with my feet up in order not to feel slightly dizzy the entire time. The dizziness on standing up will pass quickly as long as I am careful but after a few steps you may find me clinging to a bit of furniture for support as another spell of dizziness hits before passing again. I have to be a bit more careful on days like this and everything is a little more difficult than it usually is.

I’ll be able to watch an hour or so of television at a time, read a chapter of a book if it’s quiet or do a bit of knitting or crafting. I’ll need more rest breaks than I would on an average day, and although leaving the house is still possible, it’s not recommended as symptoms will almost certainly flare even after a very short trip out in my wheelchair.

Not great/Not so good. It’s a bad day but not the worst kind of day. Both the pain and fatigue are worse than usual. I may have a headache so keeping conversation to a lower volume would be appreciated. Following a conversation is difficult and requires most of my concentration; I can only follow one thing at a time, so if I’m typing a message to someone, please wait until I’m finished, or ask me to pause so you can speak to me, as otherwise I will not only have no clue what you just said, but I will also, in all likelihood, write a message to someone which makes absolutely no sense. Brain fog is worse than usual too, so finding words and/or getting them muddled happens more often. The dizziness will likely be bad, but manageable providing I am careful; sitting reclined with my feet up, changing positions carefully etc.

I may not be able to cope with the television, the sound and bright moving pictures may be too much for my brain to compute. If I’m lucky I might be able to tolerate watching an old favourite children’s film on DVD or if it’s quiet I will be able to read a chapter or two of a book, however this is not guaranteed and I might have to give in after a few sentences. I’ll be able to keep myself occupied with crafts, colouring or knitting providing my hands aren’t too painful and my grip isn’t too bad. I’ll only leave the house if I absolutely have to; for an appointment which cannot be easily rearranged, and if I do that the hours/days which follow will require more rest.

I’m not feeling so well/I feel awful. This is most probably the biggest understatement you’ll hear. I want to lie down on the sofa, or in bed, wherever is quietest, and less bright. You may find I end up close to tears, frustrated and upset about just how unwell I’m feeling if I remain where I am. Following a simple conversation is taking almost all the energy I have, my pain levels are rising and the fatigue is making thinking difficult. My head hurts from trying to make sense of what you’re saying to me. I’m feeling slightly faint most of the time when I’m upright in any sense of the word. I need to go somewhere quiet and rest until the worst of this passes.

I can’t do a whole lot of anything. The television is often too much, and I don’t have the concentration to read even a single sentence of a book. I might be able to manage a bit of colouring but that’s about all.

I’m not feeling at all well. I want to go home, I want my bed. I am most probably close to, if not in tears, because I am overwhelmed by how bad I am feeling, or if I am out, because I am so disappointed I’m having to leave earlier than I want/expected to on top of being overwhelmed by the symptoms. My pain levels are rocketing, the fatigue is so bad I can’t really think straight and I probably have a pounding headache too. I’m feeling rather faint when sitting up, and it’s taking all I’ve got to put a brave face on that. It’s taking all my energy to cope with all the symptoms my body is throwing at me. I just want to curl up in a ball and sleep until it all goes away (although I probably won’t be able to sleep because of it all and so will just have to curl up and endure it until something gives so I can sleep)

In all honesty there are variations to those answers, and I may not have all the symptoms described when I answer, but you can be sure there’ll be some of them present. The truth is I can’t put every possible answer to that question in a blog post, so I’ve picked the ones I use most, and described some of the possible things I may be feeling at the time I say it; there may be other things going on, it may be only one certain aspect of my illness is worse than usual that day. The main thing to take from this post is that the face value of my answer probably means something very different to what you would expect it to; keep that in mind when you next ask me, or anyone with a chronic illness or disability how we are.

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A big part of life with M.E. or any other chronic illness for that matter is how isolating it can be. Being too unwell to leave the house for long, if at all, makes for quite a lonely existence.

Back in 2005 when I first became ill, loneliness had more of an impact than it does now. Back then we’d not long got broadband, and only had the one desktop computer that the whole family could use. The internet was still a bit of a new thing. I went from socialising every day in school, to being stuck at home on the sofa rarely leaving the house. And when I did leave the house it was mostly for doctors appointments. There were very few ways to keep in touch with friends; the odd letter or text message was sent and received but there wasn’t many other ways to stay in touch. Email and instant messaging were just emerging, and to do that you had to be well enough to sit at a desktop computer, not just lie on a sofa.

Things have changed so much now, the internet and mobile devices make staying in touch with people so much easier. A simple message can be sent while lying on the sofa or even in bed. It also provides a place to meet people who know what we are going through, who have the same illnesses, and who can relate to how we are feeling.

Don’t get me wrong, life with chronic illness is still lonely. Nothing can ever replace real life company and conversation; actually having people there for you, offering a much needed hug and support when things get particularly tough. There are days when I’m too ill for social media, or to reply to messages, when I want the comfort I get from talking to a friend but I’m simply not well enough to put a message together or cope with the screen on a phone, tablet or laptop.

There are times I need a break from social media and using my phone, even if I’m feeling fairly okay, sometimes I just need to switch off from being online. But there are drawbacks to that too. Unless I’m well enough to be doing other things, keeping myself occupied, the loneliness sets in.

A short, simple message can literally make my day when I’m feeling particularly lonely. It can be hard for me to reach out; I don’t want to bother a friend who may be feeling particularly unwell themselves – most of my friends have similar chronic illnesses to me – because I don’t want them to feel like they have to reply to my message. But at the same time I long to have a chat with someone, especially someone who can relate to how I am feeling.

Sometimes all I long for is a hug. No pressure to talk, just the comfort that comes from being wrapped in a hug. That’s the one thing social media, and messages can’t replace. But social media and forums do help ease some of the loneliness, even just knowing that there are people at the end of the internet to talk to.

If you have a friend with a chronic illness, why not drop them a short, simple message today? You could be the only person to do so, and it can mean the world to them. Take it from me, someone who knows.

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My Story

I was 12 years old, in my first term of secondary school when I got a sickness bug. I spent a week off and then returned to school. But I was struggling – I had a sore throat, headache, all my muscles and joints ached and I tired very easily. My parents put this down to the after effects of the sickness virus and the fact it was coming towards the end of term, it had been a big change going from primary school to secondary school!

After the Christmas break I returned to school as normal for one week, before getting sinusitis and being off for two weeks. From then on the difficulties came. The symptoms I had been getting before the Christmas break were now a lot worse and every morning there would be tears because I didn’t want to go to school feeling as I did. My parents took me to the doctor who couldn’t find anything physically wrong with me and told me I needed to go to school. It was suggested I was being bullied – which was totally untrue, in fact for once in my life I wasn’t being bullied but being accepted for who I was.

This continued for a month or two, me being pushed and pushing myself into school although I would do my work alone in the special needs room to save walking around. The doctor eventually referred me to a paediatrician who diagnosed me with Post Viral Fatigue Syndrome. They said I would be better within a month which to me was such a relief. But I was to carry on going to school and about life as usual despite the symptoms. And so it continued with no improvement which was very disheartening. I went back to the paediatrician a month later who couldn’t understand why I wasn’t better! Because of the joint pain I was referred to a Rheumatologist.

On Friday 13th May 2005 I was diagnosed with Myalgic Encephalomyelitis after lots of blood tests (too many for someone who has a phobia of blood AND needles!) But at least I had a diagnosis – Someone actually believed I was ill! The sense of relief that brought me was unbelievable. From then on I got help from the school – I was supposed to do half days but that turned out to be impossible so home tutoring was provided.

By this point I was virtually bed bound, well sofa bound. I would get up, come down the stairs and lie on the sofa. I had considerable pain all over my body but the worst of it was in my legs. I had a constant headache and sore throat with varying degrees of severity and it was a struggle to eat – I would feel hungry, my parents would make a lovely meal, I’d take a few mouthfuls and be full or too tired to eat any more. I would only move from the sofa to use the bathroom, I had to have help getting dressed and showered – my independence was gone!

From 2005 – 2009 I stayed much like that, sometimes improving so I could sit up more and then relapsing again. Education didn’t help matters as I was pushed to do 5 one hour lessons a week, 5 GCSEs and at one point go into school for a lesson. In the end my parents put their foot down and I did just one GCSE which was still a struggle but I managed to do it. I did a form of Graded Exercise Therapy under a physiotherapist, which made me worse, the physiotherapist discharged me after a few weeks because she could she it was doing more harm than good.

From June 2009 – October 2010 I took a year out really. I did 2 classes at a local adult education centre in web design. And improved greatly! To the point where I could walk, go out occasionally and even though I still tired easily and had aches it was much better than it had been.

In October 2010 I started studying with the Open University, and although it was challenging I managed to stay quite well  until 2012. But a few factors then made me get worse again – I was unable to get the rest I needed when I needed it and pushed myself when I shouldn’t have. This resulted in me suffering a relapse but I continued to study.

At the end of February 2013 after a severe throat infection, allergy rash which had kept me from sleeping, pushing myself to do too much along with some troubles with my neighbours I crashed. I was bed bound for 3 weeks, and had the flu as well. I couldn’t stand light or noise, struggled to move without intense pain and slept lots. Things improved in the months that followed, frustratingly slowly but it was improvement all the same.

In 2014, life sent one of the biggest challenges I’d faced to that point; the loss of my Gramps, just a few weeks before my first Open University exam. It was at that point everything felt too much, I came incredibly close to giving up on my degree because the loss affected my health quite badly. If it hadn’t been for some amazing, encouraging friends and family I wouldn’t have continued with my degree and the exam. Again, slowly through the second half of that year my health improved, little by little.

The beginning of 2015 was another tough one, this is when the worst of the fainting spells started. The day before our first family weekend away in I can’t remember how long it was, I spent a lot of the morning on the kitchen floor unable to get up again without fainting, and then lying on the sofa, still struggling to sit up at all without feeling really faint. I could barely walk the next day when we travelled to Skegness and our holiday apartment at Butlins, but I managed to enjoy myself, even if the bulk of my time was spent inside the apartment rather than exploring. Our family suffered another loss shortly after, this time my Nan, I was already pretty unwell by this point and there wasn’t much further left for me to slip down. Again, friends and family rallied round and little by little as the year went on I improved again. Yes I still needed a wheelchair when getting out of the house, and I couldn’t get out very often but it was still improvement.

2016 and 17 continued in much the same way, there were family funerals, continued difficulties with neighbours, the self-imposed pressure of studying for my degree, and a lot of ups and downs with my health. There were signs of slow improvement in some aspects, but in general it stayed about the same level.

And so it seemed 2018 would go in the same way, however with the beast from the east making my joint pain so much worse winter was a tough time. I went to the doctors and was referred to the local Chronic Fatigue Service. I was wary, I knew Graded Exercise Therapy was the recommended treatment, I also knew that 12-13 years ago that had made me worse. But I went with an open mind, still hoping that perhaps I’d get some help and support, I wasn’t prepared when I was told I should be doing more and I shouldn’t be using the aids I was using. How could they not understand that I wanted to be doing so much more than I was but that doing so made me worse?

I went back to my GP, and told him, whilst almost in tears, what had happened at that appointment and he sprung into action. New pain medication to enable to sleep better at night, a referral to wheelchair services because my wheelchair had recently broken, and a referral to a specialist cardiologist in London about my fainting spells. Sure, things remained at around the same level for the rest of 2018 but with the new medication I was managing a bit better and the promise of an appointment with a specialist provided hope.

And so we come to 2019, it’s not even halfway through the year and although my health has remained pretty much the same, with a worsening of some symptoms, I already have so much hope for what the next few months might bring! I’ve had my appointment with the specialist cardiologist, he listened to me, and wasn’t only interested in what I had been referred to him about, but also the rest of my symptoms! It is safe to say in the 14 years I’ve now been ill I can’t remember having a more positive hospital appointment. Everyday tasks are still a struggle, but I now have a bit of hope that some of my symptoms will be treated and as such there is a possibility other things will improve too.

That’s not to say right now I’m not still badly affected by M.E., I am.

  • I need help with getting changed into my pyjamas, but thankfully most days I manage to dress myself in the mornings.
  • I can’t always grip a glass so have to use mugs and even those have to be quite light or else I spill it!
  • I am still sensitive to light and noise but not to the same severity. Saying that even a rustling crisp packet as someone opens it is too loud for me at times!
  • Sitting up can be challenging as I get dizzy and feel faint very easily.  Some days I struggle to sit up at all other days I can sit up for short periods. I have the same trouble when standing.
  • Standing and walking is challenging and a real struggle at times. Stairs are even more so, I often ‘bottom shuffle’ down as it feels safer. Going up my parents often have a hand on my back to keep me steady.
  • Muscle weakness is a real feature and I often find I can’t do simple things like open bottles, some doors (if they have catches on) etc.
  • Joint and muscle pain is bad, ordinary painkillers take the edge off it on good days but have absolutely no effect on a bad day.
  • I always have a slight headache but it varies depending on the day. The same can be said for a sore throat.
  • I can’t control my body temperature, although it can be hot outside I can be frozen under a duvet!
  • I can’t always sleep and when I do it’s often unrefreshing – I wake up feeling like I haven’t slept!
  • Then there’s the brain fog, poor memory, not being able to find the right word for things.
  • And of course there’s the unremitting fatigue and the simplest of things leaving me needing a rest.

But at least for the time being, I have a little bit more hope that things might change.

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