Living Life, Within the Limits of Chronic Illness

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Wheelchair Services

On June 13th I was referred by my GP to the wheelchair services in Essex. I was surprised at how quickly my appointment came through, and even more surprised at how soon the appointment was, especially as we had to ring up and change it! I had my wheelchair assessment on July 3rd.

Prior to the appointment I was nervous and trying to find out exactly what happened at these appointments, in order to allieve some of the anxiety I had about it. Given my experience with specialists in recent months, any appointment with a new person in regards to anything which relates to my health leaves me rather anxious. I got some helpful comments from friends on social media but there were differing stories too. So I thought I’d put this blog post together for anyone facing a wheelchair assessment and wondering what to expect; this is based solely on my own experience and may differ elsewhere in the country and depending on your needs etc.

What Happened at the Appointment?

First off, after the introductions, I was asked about how I use the chair. Mainly do I self propel it, the answer to which is a little but not much as I can’t do it for long or any distance. Also how much I use it; I can’t leave the house without it unless I’m going from one door into the car, and able to park right outside the other person’s house. I can’t go around any shops without it.

The next question was why? Is it just a lack of energy or what? The answer to which is rather complex but I kept it fairly simple; it’s mainly fatigue but also my legs are painful, shake and give way beneath me after even a short distance walking on crutches.

The assesor then measured across my hips while I was sat in my secondhand chair, and from my hip to my knee, before leaving the room saying she would see what they had available for me.

She returned with three for me to try, all suitable for my size.

A Sunrise Medical Breezy Moonlight. This I didn’t find particularly supportive, it is the most basic one they do. I couldn’t try self-propelling in it as it was an attendant version in the size I required. Although she did say they did a self-propelling version.

A Sunrise Medical Breezy Rubix. This I found very supportive. I used my own seat cushion (wedged in as it was slightly too wide really) because the foot rests weren’t adjusted for my height but it was comfortable. Plus I could self-propel quite easily; much more easily than any of the self-propelling wheelchairs I’ve had in the past.

And an Invacare Action 3NG. Again this was comfortable to sit in & quite supportive. However I found it difficult, almost impossible to self-propel. Which surprised both me and the lady doing the assessment. I just couldn’t get the momentum on the wheels.

I tried each one before choosing the Sunrise Medical Breezy Rubix which I’d found easiest to self-propel and comfortable. My Dad checked out the weight & had a push and agreed too.

She then went to check the stock and to see how long it would take to get me one. Amazingly they had one in stock & it could be delivered in 7-10 days!

When it was delivered, about 10 days later I believe, it was demonstrated to me and my Mum. They had me sit in it to check the footrest height and concluded it would be about right (it wasn’t and we later had to adjust those ourselves but it does differ depending on what shoes I’m wearing so I can’t really grumble about that!).

We had a few niggles that we identified in the days that followed, which were soon sorted; the cushion they originally provided was slightly too long and rubbed on the back of my legs causing sores. This was rectified in a way but now I have a cushion the correct length, which is an inch too wide for the wheelchair really, so it is quite a squash to get it in! I can’t actually do it myself and it leaves the flip up armrests completely unusable, and so I have been searching for a solution myself. Although it looks like my only option is to make one to fit, which will be fun!

The original armrests were a bit low for me. I think in a way that comes from trying the wheelchair without the type of cushion they provide, but it also stems from me being abnormally long in the body too! These have been adjusted and replaced with bulky padded armrests which make the flip-up feature more difficult to use, but I can actually rest my arms on. Why they are so much wider than the original armrests I don’t know.  These niggles can be lived with and are much better than being stuck in the house without a wheelchair.

Overall I was absolutely stunned at how quickly it all happened. I was expecting a long wait for an appointment and then a further wait while the wheelchair was ordered and delivered. But it seems lady luck was on my side. That’s not to say I’m enthralled with the service provided in terms of the minor adjustments, and the initial set up, but considering the pressures the NHS is under I am immensely grateful to have been provided with a wheelchair from them. Even if it isn’t perfect, it suits my needs better than the secondhand one I had, and I now know what to look for should I decide to go out and buy a better one.

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Time for a bit of an update

It’s been a good few months since I posted an update of how I am and what has been happening. So I thought while I’ve got a bit of energy, and some quiet time I would do a bit of an update.

A lot has happened in the last four months or so since I last properly blogged. In that time my health has been rather up and down, and the summer heat here in England was quite a challenge to cope with given the heat intolerance that I suffer from thanks to M.E.

I got my wheelchair from wheelchair services in mid July, and have started writing a post about my experience with wheelchair services which should be ready to be posted very soon. Although not perfect by any stretch of the imagination, the wheelchair provided supports my body a lot better than any previous wheelchair I’ve had. There have been a few niggles but these can be lived with and are much better than being trapped in the house; which without a wheelchair I would be.

I managed to have an afternoon out at the coast during the summer too, it was lovely to be out in my new wheelchair giving it a proper test run. And for once we made it to the coast when the weather was actually nice; although to be fair there wasn’t a lot of bad weather to be had over the summer this year!

The heat though was especially difficult to cope with, and some days it was just too hot for me to be outside, even in the shade. And so I spent many days inside doing my best to stay cool in front of the Dyson fan. Possibly the best thing I’ve bought this year as it has been an absolute god send during the hot weather, where previously the entire family would have to do without a fan because the movement of a standard fan makes me feel sick and dizzy, and the noise of a tower fan is too loud.

Thankfully the weather cooled down a little in August when I had to travel to London by train to Kings College Hospital. Again there is a post in the making with details about travelling by train using a wheelchair. This was the most frustrating and disappointing day I’ve had in the past four months, as having travelled all that way, with a few difficulties during our travels, I arrived to find my appointment had been cancelled because it was with the wrong doctor! They had sent a letter out to inform me of the cancellation and my new appointment date the week before (which actually arrived at home while I was being told this at the hospital!). So now I have an appointment booked for the end of May next year; that’s the earliest one available with the specialist clinic I need to see apparently. The only good thing to come from the London trip, other than the obligatory McDonalds (family tradition from previous London hospital trips!) and the experience we gained in managing a wheelchair on trains, was that I got the details required to request transport for the appointment in May. So hopefully there will be no more train drama, and the trip will be a little bit easier on my body, as I struggled with the crowds, the noise of the underground particularly, and the stress of finding the right trains when we had to make all the changes required to get there!

September saw an appointment with the Occupational Therapist at the CFS Clinic. Now this was an appointment I was dreading, after my experience with the consultant there back in May. However it went a lot better than expected, and I’ve been managing the very gentle stretches she has given me to do each day. I have another appointment in the coming week, so we will see how things progress. I’m still a little on the wary side but at the first sign of things worsening I will stop.

At the moment life isn’t proving to be particularly easy. The waves of fatigue hit earlier in the day than I’d like, and the pain some days is ridiculous. I am however coping, and managing to do a few bits and bobs like blog, knit and even read a bit of a book as long as I’m careful with how much time I spend on each one.

There’ll be more from me soon, all being well.

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Welcome To My New Blog!

What can I say? It was time for a change, and a bit of a challenge; I wanted to put some of that knowledge I gained doing my degree to some use, and learn some new stuff too; so here I am! With my own domain and a blog powered by WordPress.

I’m still getting my head around some bits and pieces, and it is still very much a work in progress but it’s getting there.

Anyway, WELCOME to my new site, I have managed to import all my previous posts from both my blogs; A Life Within An Illness, and Life With Me Doing A Degree, previously hosted on Blogger. I have tried to make sure the links in these posts now link to the appropriate posts on this site but I may have missed a few; fortunately I’m leaving the blogger blogs as they are (just not adding to them) so those links should work for the forseeable future at least.

Feel free to take a look around and get in contact as usual. Links to ways you can contact me on social media are on the right-hand side, and if that’s not your thing there is a contact form at the top of the page; just click Contact Clare!

I hope to do a bit of an update, and get back to blogging more regularly very soon!

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And the busy-ness continues!

Can’t believe its been over a month since my last post and so much has happened in that time!

Although the starting bar for the CFS Clinic was low, my appointment with the consultant fell way below my expectations and I left the appointment almost in tears. There was no real support or understanding, and it felt to me as if the consultant was implying I was just plain lazy the entire time!

The use of a wheelchair isn’t advocated, and it felt as if they thought I wanted to be using it, which is so far from the truth it’s unbelievable. I do not want to be reliant on a wheelchair, and thus someone else to push it, in order for me to be able to get out of the house. I had been warned this would most likely be their attitude but it still stung when I found myself in the room being told it for myself.

When I described what I do in a day generally, the consultant said they want me doing more (as if I don’t want to be doing more!) I tried to explain that doing any more than that, which I do do on occasion, utterly wipes me out so I can’t even do the basics the next day but that didn’t seem to matter.

I was told that they don’t advocate pushing through the fatigue and flaring symptoms, and yet when I was told about Graded Exercise Therapy and doing it with an Occupational Therapist apparently if an increase in activity is agreed, it has to be done on good days and bad days. Now I don’t know about you but that sounds awfully like if I felt it was too much on a bad day I’d have to do it anyway!

The other thing that got my goat, so to speak, was the attitude towards my diet, or more specifically the amount I eat. For the record I tend to eat three decent meals a day, with the occasional snack. But I’m not one for snacking between meals, never have been. Sometimes I stick with eating little and often because I can’t manage three decent meals. Other times no matter what I do I get dizzy after eating! But this didn’t matter to the consultant I saw. It seems I just need to tell myself I need to eat an afternoon snack, or eat a little more, and my problem will be solved!

After that appointment I was left feeling hopeless, upset and rather angry. I was honestly ready to give up on the clinic, but I attended my next appointment with the therapist I’d seen the first time I went and that went a little better.

I insisted someone stayed in the room with me for the appointment that time though, having seen the consultant on my own and feeling railroaded the way I did, I wanted someone there for moral support, and who could also act as an extra memory aid as my ability to remember everything, even stuff that’s only just happened, is pretty poor.

I told the therapist my concerns and she appeared to listen, before explaining that the occupational therapist’s approach is more flexible than what the consultant seemed to suggest. It’s all about finding a baseline of activity I can manage without negative effects and building on it. They recognise that there are some events which are unavoidable, such as a day out at a wedding being bridesmaid (something I did during May, loved every minute, but also suffered greatly the following week) and that activity might be reduced in the days that follow.

Now to me this sounds a lot more like what I am used to doing; basically a mixture of pacing and gradually increasing my activity. Occasionally pushing myself to see if I can manage that bit more with little or no lingering negative effects on my symptoms. And so I am now awaiting that occupational therapist appointment to appear in the post box. I’m going to see what they say and how things go, always having someone with me at the appointments who can speak up if necessary and say if it is making me worse. The irony being if it does make me worse I won’t have the mental alertness etc to make them aware of it.

The therapist also gave me an activity diary to fill out in the meantime, to help me identify where I’m overdoing things and hopefully discover more of a baseline on my own. I’m filling it out and it is helping me identify where I overdo it more obviously than when I was depending on my rather rubbbish memory! But it is also slightly depressing as evidently it appears I’m doing too much most days. I’m working on reducing it now I’ve recognised that though!

In other news my wheelchair broke in mid-May, two days before my best friends wedding where I would need it to carry out my role as one of the bridesmaids! So we had a bit of a panic there, thankfully I managed to borrow one from the British Red Cross which saw me through that day and for a few weeks beyond until I could pick up a secondhand one to keep me going for now. I cannot explain my gratitude for the British Red Cross loan service though, without that I don’t know how I would have managed the wedding.

I’ve now got a little secondhand one which is actually more comfortable than my original wheelchair, mainly because it is more suited to the size of me! That was more due to luck than anything else. And I am awaiting news of my referral to wheelchair services to hopefully get a more suitable wheelchair for the longterm, seeing as I am dependent on it to get out of the house these days.

I have also been referred to Kings College Hospital in London for investigations into the cause of my dizziness and fainting spells. And so in August my parents and I will be making the trip up to London on the train with me in my wheelchair – quite a nervewracking thought! I’ve never used the trains since being dependent on a wheelchair to get out; mainly because I’m not really well enough to travel that far. But needs must, and whoever I see at the hospital will just have to see a totally exhausted me, and I will have to endure the week or so of payback from the trip.

So I think that is all that’s been going on, when written down it doesn’t sound a whole lot, but the impact of all of these appointments, the wedding and the trip to get the new wheelchair (to check it was suitable before buying) have all resulted in days of payback meaning little else has been possible except for the basics of washing, dressing and eating each day.

I’m hoping that while I’m waiting for these appointments I will be able to return to doing some bits and bobs I enjoy, such as blogging a little more often, knitting, card making and perhaps even make a bit more progress towards finishing decorating my room so I can actually unpack the boxes of stuff piled around the place. Doing a little each day and buidling from there.

Bye for now,

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