Smiling Clare

Living Life Within the Limits of Chronic Illness

Author: Clare Page 1 of 50

In Limbo

That’s how life feels for me at the moment. I mean there have been times since 2005 I’ve felt like I’ve been living life in limbo; trying to work towards qualifications for a life that may not materialise, it all depended on how my health was in the future. And now, having finished my degree back in 2017 it feels like my chances of putting those skills and the knowledge I gained from it, to work in some kind of paid employment is a long way off.

As I lie here typing this I am awaiting letters from two different hospitals for appointments which will hopefully prove useful. I have an appointment with the dietitian next week, to see if the changes I’ve made to my diet since I last saw them has made any difference to my low salt levels.

I’ve been doing the gentle physiotherapy exercises I’ve been given, once a day and have just started increasing them to the level the physiotherapist suggested; she wanted me to start off doing them once a day just to make sure there was no ill effects, before upping it to doing some of them twice a day as she would usually recommend. And so that is what I have done. And so far so good.

But it feels like the rest of my life is in limbo, I can’t plan anything much because whenever I do I receive a hospital appointment for that day or the day that follows and either the plans have to be cancelled or pacing has to go out of the window and I suffer greatly as a result. I don’t feel like I can delay the hospital appointments as usually there has been quite a wait for them anyway, and also I need those appointments if I am to get any answers as to what’s going on in this dear little body of mine.

I am so grateful that one referral for my dizzy spells and tendency to faint has snowballed into so many different things being investigated, and potentially more diagnoses, but I have to admit it is scary. To think that some of these things have been ignored since I first started showing signs of illness back in 2005 is frightening. It brings up questions of whether things could have been different if they’d been picked up back then, should I have been pushing more for support and answers? Questions which can’t really be answered.

I know not all of these things necessarily date back that far. The latest referral has come about as a result of some persistently abnormal blood results, something which is unusual for me, as like most people with an M.E. diagnosis my blood results have previously always come back normal. So we wait and see what will come from this referral, I have a strong suspicion it will mean more blood tests and needles, which if you’re a regular reader of this blog, you’ll know I faint on sight of needles, and often during or after a blood test even without seeing the needle. I’ve only managed not to faint once, in all the blood tests I’ve had over the years. So you can guess how much (or how little) I’m looking forward to that particular appointment! Don’t get me wrong, if it gets me some answers it’ll be worth it, I’m just not particularly looking forward to that one coming through.

Whatever happens I suspect it’s going to be a fairly slow process; I know rebuilding my muscles through physiotherapy will be a very slow process, and that doesn’t surprise me, I am just grateful I have a physiotherapist who is understanding of ALL the conditions I’ve been diagnosed with, or am suspected of having, and is building a plan around them all. As for the rest of it, well I’ve come a long way from that first cardiology appointment back in May for suspected Postural Tachycardia Syndrome (PoTS), although I may not be any closer to getting that diagnosis in one sense (I’m still awaiting test results and news on that front), I am now under the care of so many different hospital departments, even different hospitals actually, that although progress on the diagnostic front may be slow, the support to find ways to improve the quality of my life is there. If they find things which are treatable, I have faith they will be treated, but in the meantime everything is being done to help keep my health at the level it is and hopefully find some way of improving my quality of life. Yes it’s going to take dedication and hard work from me, but it will be worth it.

So while I’m in limbo and I am unable to put the skills and knowledge from my degree to use in paid employment, I have a much more important task on my hands. You see to keep track of referrals to and appointments from around 6 different departments, spanning 5 different hospitals, while managing to pace myself around those appointments and do my physiotherapy exercises is a challenging job in itself, that’s without any additional stress that life throws my way. And in the end I will hopefully get the biggest reward I could hope for; better health, or failing that at least the knowledge I need to be able to live the best possible life with my health the way it is. I’m ever hopeful that the outcome will be the former though!

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Adventures in “Frog”

Adventures out anywhere but hospitals are a rather unusual occurrence right now, as most of my energy is taken up simply by attending those appointments. However during a week, free of appointments, at the beginning of September, my parents, sister and I managed to get away to the nearby coast. And although the holiday itself wasn’t the most relaxing (Actually that’s putting it mildly!), we did manage some trips out where I could begin to get to grips with using “Frog” my wheelchair with Alber E-Fix power assist.

Slim woman in a green framed wheelchair, wearing bright blue trousers, a pink top and black hooded jacket, holding a camera up to her face taking a photograph

Caught taking a photograph whilst out for the day in “Frog”

I learned a lot about “Frog” and the Alber E-Fix during the little trips out I managed with my family. The biggest thing of all was that even a seemingly small trip, takes more energy when I’m the one in control of where I’m going, especially when I’m still getting to grips with the controls; just how sensitive is the joystick control to turn a corner? Is there enough of a gap for me to get through? Honestly navigating tight spaces when you’re still getting to grips with how sensitive the joystick control is, is no mean feat! This is one aspect I’m sure will improve over time, as I use it more, it should become second nature; like learning any new skill.

It is incredibly freeing (and stressful!) being in control of where I’m going again, after at least 7 continuous years of being dependent on someone pushing my wheelchair so I can get about when out of the house. On these trips out I ended up doing more shopping than I have in years, because I could decide which parts of the shop I wanted to take a closer look at, which previously I wouldn’t have bothered asking to get closer to because I always felt like it made me a nuisance.

I was surprised by the number of shops I could actually get in as well; the instructions for the Alber E-Fix state it can manage obstacles up to 4cm high. Now I’m no expert at judging height, but I’d say I definitely put that to the test, with my parents encouragement! There was a charity shop I wanted to go into (because who doesn’t love a good charity shop?!) but which had a slight step, in hindsight probably close to 4cm high, into it. I wasn’t sure “Frog” would manage to get over it, however I was encouraged to give it a try with my Dad standing behind me, ready to assist if necessary.

Well….this is where we discovered that “Frog” is an apt name for my wheelchair, as I approached the step with the two front wheels, once touching the step there was, what I can only describe as a burst of power from the rear powered wheels, and up the step “Frog” hopped! Or at least that is how it felt to me. As soon as it was over the obstacle the power dropped back down to what it had been before going over the step. And getting out was just as easy (although without the need for the burst of power as there was no obstacle to get up!).

The back of a light brown haired woman, sat in a wheelchair, looking out toward a flowerbed and house in the distance which is in the background of the image

One of the adventures in “Frog”

Now I learned one other thing about “Frog” on one of these trips out; how ‘easy’ it is to do a wheelie when going up over a bridge. And as such, how grateful I am for the anti-tips that are fitted to “Frog”! You see ladies and gents, I had been over this bridge in the opposite direction, not 10 minutes before without any trouble at all. However, it turns out one side of the bridge is actually steeper than the other, and so on my return journey over it, as I innocently started wheeling myself up it, “Frog” tipped backwards onto the anti-tips, giving me the scare of my life! It soon righted itself, thank goodness, (although it took my heart rate a while longer to settle!) and has become one of those funny stories for all to enjoy.

It’s nice to know the anti-tips work, but I hadn’t exactly been intending on making use of them, especially not quite so soon after getting “Frog”, I mean this was the longest adventure I’d had out in it and as I say, I was still getting to grips with the controls and navigating where I was going.

On all these trips out with family, I left them to lead me. I am yet to feel confident enough in using “Frog” to be the one leading the way. I look to them to check it’s safe to cross the road; it’s been 9 years since I had to do that for myself. (That’s not to say I haven’t paid attention when being pushed in a wheelchair, but it just hasn’t been my responsibility). I think it will be a while before I feel confident to even attempt venturing out in it on my own, I’m going to want someone there as a safety net for a little while yet. But I suppose after 9 years being dependent on someone else to get you places, that is only natural.

However that week in September, despite not being the most relaxing, provided me with opportunities to take “Frog” out on a few little outings and begin to get to grips with being a little bit more independent! Which while being completely, utterly exhausting, (honestly I can usually manage an hour out in my wheelchair now, somewhere quiet, with “only” requiring a few hours rest afterwards to prevent a significantly worsening of symptoms, with “Frog” I needed the rest of the day to rest!) It was also the most freeing and exciting thing to happen for some time! So here’s to “Frog” and having many more adventures!

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Another diagnosis…

Well the rheumatology referral I had went through really quickly, and I was extremely lucky in that I managed to get a cancellation, rather than having to wait about a year for an appointment as I was warned about.

The appointment went surprisingly well; she examined all my joints and has concluded I have joint hypermobility syndrome. Which on getting home and researching, doesn’t actually exist any more, but has been renamed Hypermobility Spectrum Disorder (HSD).

Having been told in the past by a doctor that my joints aren’t particularly hypermobile, I was half expecting to be seen by a rheumatologist who would tell me my joints weren’t hypermobile and thus my cardiologist had seen something that wasn’t there. I seem to go into any doctors appointment half expecting a bad outcome, one where I am disbelieved.

But alas my streak of seeing good doctors has continued! I suppose after 14 years of illness it probably had to happen at some point. I’m sure a lot of people can’t understand why finding a doctor who believes your symptoms and wants to help is such a big deal, but I’m also sure that a lot of people with chronic illness know exactly what I mean; so many doctors are happy to brush new symptoms aside as part of your existing illness, that things are missed, and eventually you learn that with treatment your symptoms could at least have been managed, and as a result your quality of life could have been better for who knows how many years since those symptoms began and were ignored.

Anyway, the upshot of all of this is that thanks to another good doctor I am now awaiting more letters with appointments for physiotherapy and hydrotherapy to help strengthen my joints, providing I can tolerate it. And I am also being referred to another London hospital which specialises in hypermobility, with talks of a special rehabilitation programme they do for learning to manage the condition, including pacing as well as physiotherapy etc.

It’s all a bit overwhelming if I’m honest with you, in the last 3 months, I’ve gone from having almost no medical support, to being swamped with specialist appointments, tests and it looks like I’ll soon be under the care of 4 different hospitals, 2 fairly local and 2 in London! Guess it’s time I started getting over my dislike of hospitals!

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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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