I've been struggling with my energy for several years and within the last year and a half the problem has escalated; now, even after giving up my social life and my more active hobbies, my fatigue has become so debilitating that I've had to go off work sick.
It's believed to be Chronic Fatigue Syndrome (ME) or Postural Tachycardia Syndrome (or both, as is often the case) but after waiting months I still haven't received a single appointment letter from either the CFS team or cardiology. I'be been chasing it up but I've still received nothing. I've also been told that there's a six-month waiting list for CFS services.
I can receive no help until I have a formal diagnosis and even then I'm likely to be provided with an inadequate heavy steel wheelchair or be given a voucher for about £140 (please check NHS wheelchair services guidance online for proof!)
What tires me the most is standing and walking. I have bought a secondhand mobility scooter and an 'off-the-shelf' wheelchair (and changed my car for the extra space to transport them!) and they are very useful for letting me get out and about but neither are suitable for everyday use at work.
I have been off work for over two months and I'm desperate to return. I love my job and my team needs me. Unfortunately, I simply can't return without a suitable wheelchair.
Having considered many different options over the months I've been off work, I believe the best solution would be a properly custom fitted ultralightweight rigid wheelchair (to maximise pushing efficiency so energy use is minimised). The quotation for a chair specced out to meet my needs is £3110.
To supplement this, a MaxMobility SmartDrive MX2+ Power assist unit would help for longer distances or on days when I'm particularly struggling. Using this with a manual chair would help me finding a balance between maintaining fitness and controlling fatigue, both in and outside work. I believe this will be of use whether I am ultimately diagnosed with CFS, PoTS, or both.
Once I am measured for a chair, it will take around six weeks for it to be built. The sooner I'm able to raise funds for it, the sooner I can get on with my life in the most normal way I can.
If you can give anything to help me, I'll be so grateful. Please help me get my life back on track and stay in the job I love.
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Q: Can't you just wait for a diagnosis?
A: It's been months since I was referred and I haven't received an appointment letter from either department. Once I finally receive the appointment letter, it could be months before I am seen and I may well not be diagnosed on the first visit. I've been chasing them up but frustratingly nothing is happening and I've been told that (for CFS services at least) there's a six-month waiting list. Even when I'm diagnosed, support in acquiring a suitable wheelchair will be minimal.
Q: Once you're diagnosed, won't you receive treatment and no longer need the wheelchair?
A: It is possible to recover from CFS and PoTS but neither condition is likely to go away quickly. As it is, I've been getting worse over several years.
Q: Will the NHS really give you only around £140 for a wheelchair?
A: Yes, in fact it's been in the news recently that many people are having to crowdfund their wheelchairs because the provision is severely inadequate.
Q: Can't you just make sure you're sitting down most of the day?
A: Firstly, my job needs me to move around quite a lot and I want to carry on doing as much of my job as I can. Secondly, managing my 'energy budget' is extremely difficult and I have to be constantly wary of how much I'm using - in and outside work. The wheelchair will help me in all aspects of my life to minimise energy usage and minimise the effect of fatigue on my work and my life in general.
Q: If you get fatigued a lot, how can you self propel?
A: Sometimes I can't and I do need my wheels to be powered but if I don't get any exercise at all, I seem to become fatigued by this too! So finding a balance is incredibly difficult but very important. The power assistance can be added or removed depending on my needs that day and it gives great flexibility in the amount and type of assistance it provides.
Q: I know you - I've seen you walking/running. How do you explain that?
A: Until very recently I thought that my fatigue was getting worse because I wasn't active enough. You might have seen me at work running up the stairs, for example. 'You're so fit!' people would say. Running (or even walking) up stairs, for example, could be painful and exhausting. I thought I was out of condition and had to do it more! Unfortunately it was the opposite and the more I did, the worse I got. In theory I could still walk and run now but not without a lot of discomfort and exhaustion and I would make myself very ill again.
Q: Can you tell me a bit more about yourself?
A: I'm 28. I used to be very active (badminton, Army Cadets, judo, taekwondo, cycling, hiking, camping, etc.) but that's not possible any more. Languages and linguistics are my major passion. I also enjoy photography, Postcrossing (sending and receiving postcards to and from people round the world), visiting places of historical interest, and playing German-style board games. Here are some photos of me:
^ At Birmingham Botanical Gardens
^ Yay, photography ^_^
^ My current chair
- Colleagues AtMyOldWorkplace
- Tricia Harvey
- Radek Uzel
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