What do you do?

“What do you do?”

The question I dread. The question I cannot answer. Not without losing face, anyway.

“What do you do?”

I sit on Twitter.

That’s what I do. All day. Mostly on a tablet. On a laptop or desktop PC when I am well enough. On a phone in bed when I am not. I’m there when I wake up in the morning. I’m there at 2am. I don’t really leave. I watch the stream of tweets flow past. And believe me, when you follow more than 3,000 people they really flow.

It fills the time between hospital appointments. The endless stream brings me news, jokes, struggles, friendship. It fills my browser with tabs to read. So many that I barely have enough time to look away from the stream to read them.

It’s not like I can do much else since I became too sick to work. Mitochondrial myopathy and a whole catalogue of other problems have robbed me of my concentration, my ability to go to my office, to talk, sit, walk or stand when employment demands it. I can’t do the things that employers are willing to pay for anymore, but I can tweet. And I do. A lot.

I still crave usefulness though.

“What do you do?”

I tell people what I think will make them see me as like them. As a productive member of society. I tell them I am an activist. A welfare and disability rights campaigner. I am, too. Twitter has got me involved in campaign groups, put me in touch with people doing anything they can to get the truth in front of media and MPs. Twitter has found me radio and TV interviews and eventually lead to me being part of a Judicial Review over PIP. Through Twitter I have listened to the despair of many sick friends when they try to get the help they are supposed to get. I advise them, tell them where to find the hidden rules, how to get help to get help. Through my own trivial tweets, I am told, I help others to realise they aren’t alone, that their illness isn’t imaginary. They have done the same for me. I have made people aware of injustice, of the fights against that injustice. I have shown them protests and struggles. I have done more than I ever did when I had a nearly functional body and brain.

But all of this takes a toll. I am not well. I am very much not well. Physically and mentally I struggle through every day, and these days, Twitter is an endless bombardment of despair. For me Twitter suffers from having split purpose. It is a space to meet friends, sure, but it is also a public speaking platform. It is a news stream. Since all my friends care about the horror of the world, even when I want to withdraw from that to recover I still see what they are talking about. Twitter is a place for intimate sharing, for larger social circles, for staying aware of what is happening, and for speaking out. The biggest problem comes when a tweet meant only for one of those purposes crosses over to the others. When a minor personal gripe to a close friend becomes an international phenomenon embedded in news stories everywhere.

Over the last few years my tweets have attracted attention. Not huge by media standards but still enough that I will often get 100 retweets on something I said. I am pretty good at accidental anger that people share and amplify. If I am on a roll I can have several tweets like this on the go at once and that makes my notifications… interesting. My tweets about illness attract replies from friends, of course, but also from more distant acquaintances. They often attract unwanted advice that is irrelevant or I have already tried and discarded years before. My political tweets often receive insults or abuse from right-wing people who have come across me being retweeted. The questions, advice, insults and abuse all make me panic and retreat from Twitter. Well, that’s not quite true. I have started retreating to a private locked twitter account which just a few friends are able to see. I don’t think this is uncommon either. Quite a few people have a locked Twitter account alongside their public one, especially people who aren’t straight white cisgender men.

Admitting to having a locked account will make some of my followers sad and for that I am sorry, but this raises another aspect that I am struggling with. I have been very open about physical and mental illness and as a result I have far more people emotionally invested in me than I could ever keep track of. I feel guilty about this every day because I wish I could return the friendship shown to me. Sometimes even the friendly responses are too much for me to deal with and so I have said less about personal things on my public account and only put a few of them on my locked account instead. When I finally managed to admit and talk about my gender dysphoria I did that almost exclusively on my locked account – which is messed up in itself because I have been unashamed of physical and mental illness yet too ashamed of my gender to talk publicly.

I am not sure if there is any solution to the problems I have mentioned. I am bad at segregating my tweets between accounts and in any case I feel useless when something I said could have helped someone else but stayed hidden away. I have thought about deleting my public twitter account but that would be a waste of something that can do a lot of good. I have considered unfollowing everyone and then adding back only a few people so that I see less awfulness but that would upset many people and not address the replies that I cannot deal with.

I am not asking for advice – as should be obvious if you just read this blog post. I guess I will continue with Twitter, continue to raise my voice about the problems that I see, because that is what I do.

“What do you do?”

I shout.

Please help – I need an electric wheelchair

I have set up a GoFundMe page to raise money to buy a new electric wheelchair.

Click here to visit my GoFundMe page.

Please don’t donate unless you can afford to.

My wife was in a motorbike accident a few weeks ago and is currently in hospital with broken leg, ankle, wrists, thumb and fingers. I have a mitochondrial disease which causes pain and exhaustion so I rely on my wife to push my wheelchair whenever I go out but she is not going to be able to do that for some time to come. Until now I have resisted friends telling me that I should ask for donations to buy an electric wheelchair however I am going to be very stuck if I don’t have one over the next few months. Hospital visits, shopping etc will be a big problem. I can’t get a wheelchair from the NHS because in my area the NHS does not give wheelchairs to patients unless they cannot walk at all and need a wheelchair to move around at home as well as outside.

I did have a rather old and wonky electric wheelchair which I bought second-hand with some help from friends. That chair helped me with local trips but it was too bulky and heavy to fit into my car, so I could not go very far in it. Worse, our flat is not wheelchair accessible so I was forced to keep the wheelchair in a shed outside where the cold damp weather this winter has killed it. Spare parts to fix the controller are no longer available.

This is my old, wonky and now dead wheelchair.

My old power wheelchair

Reluctantly, then, I am asking for donations to buy a new electric wheelchair. I want to buy a Karma Ergo Traveller because it is lightweight and can come apart to go in my car or be stored inside my flat. It will give me some independence which will be really helpful even after my wife is recovered from her injuries.

Karma Ergo Traveller

Karma Ergo Traveller - disassembled

Thank you for reading, and thanks in advance to all of you who donate.

Previous blog posts about wheelchairs

The complex issue of looking like a fake when I get up and walk

The complex issue of looking like a fake when I get up and walk

“Perhaps. Not yet but in the future. When I’m ready to face the complex issue of looking like a fake when I get up and walk.”

This was an answer given when I suggested to someone with chronic illness that a mobility scooter would help overcome some of the problems with walking. It’s a sad indication of the judgement by society that affects so many people who could benefit from mobility aids.

Unfortunately what other people think of us is something that keeps many people from accepting that they need help. I myself delayed using a wheelchair for a year or more after I really needed one because I was scared of looking different, scared of being accused of using it only to get sympathy or benefits. In delaying my use of it I no doubt subjected myself more pain and more time stuck in bed recovering than I would otherwise have endured, and prevented myself from doing as much as I might have done.

The problem of being thought of as a fake when standing up from a scooter or wheelchair is a particularly pervasive one. The common assumption amongst the general public is that people are “wheelchair bound” or “confined” to a wheelchair because they cannot walk. Full stop. Of course there are people who cannot walk at all but it is usually not the case. Much of the fuss around the introduction of PIP to replace DLA is that the maximum distance you can walk before help is withdrawn has been reduced from 50 metres to just 20. For those that haven’t thought that through, it should be obvious that you could therefore see someone walk 20 metres or even 50 metres who still gets help to move around. If that seems unfair, think about how you would get through your day if you could only walk 50 metres in one go. For those who are chronically sick they often could walk if they had to but are rewarded with pain, exhaustion and eventual collapse. Because of the stigma around mobility aids they often put up with this until such a time as trying to keep walking ends up confining them to bed in perpetual recovery. In fact, when they finally give in and accept their need for help, far from being “confined” to a wheelchair they are actually freed up by it to go further and to do more. As a result of not wasting energy on trying to walk most of the time they have more energy to stay out and interact with people.

My use of a wheelchair actually means that when I do need to walk I can do so relatively easily as long as I don’t overdo it. The problem is that to an ignorant observer it looks like I was faking my need for help in the first place when instead I can only get up at all because I was using the wheelchair. (Although one of my symptoms is that after prolonged sitting my muscles feel like they seize up and I end up quite wobbly when I try to stand, at least for a few minutes.)

The same judgement affects people who have a Blue Badge entitling them to use a disabled parking space. (I hate that name. Mobility parking space maybe?) The use of a car and a parking space near to their destination may well mean that they can walk the short distance from car to destination without apparent signs of struggling and so passers-by jump on them and accuse them of faking it. If they did not have the car and the parking space they would probably have visibly struggled to walk the greater distances between public transport options and their destination.

If you have read this far then you are probably already convinced but the message I would like people to take away is that you don’t see everything about a sick or disabled person. You don’t see the pain and the recovery time after they have done something without apparent struggle and you don’t see what they would be like if they did not have the use of mobility aids or help from others. Don’t judge, not least because one day it may well happen to you, and if you see someone else judging, set them straight.

Related blog posts:

Embarrassed to be me

Fear and mobility

Blue Badge Blues

Why I am suing the government

The Migraine Medication Decision Process

My decision making process for taking migraine medicine goes something like this.

I’m in a lousy low mood.

But it’s probably not a migraine.

Coffee hasn’t helped.

But it might not be a migraine.

My vision is blurred.

But it still might not be a migraine.

My head feels pressurised.

I don’t think it’s a migraine.

Computer screen is too bright.

I’m just tired, I doubt it’s a migraine.

Using black text on a dark grey background is still too bright.

It’s not a migraine!

I’m wearing sunglasses.

Migraine? No.

I’m hiding in a darkened room wearing sunglasses trying desperately to think or read.

No no no no no not a migraine.

It hurts.

I feel sick.

Coloured lights are floating across my vision.

I take Imigran.

Oh! It WAS a migraine!

 

All Change: A New Diagnosis

I have been sick for at least 13 years, with some symptoms going back into my childhood. At first I was told I had Post Viral Fatigue Syndrome, then later Myalgic Encephalomyelitis. (ME.) ME is also referred to as Chronic Fatigue Syndrome, (CFS) although this is controversial as chronic fatigue is often a symptom of other illness. ME/CFS is a diagnosis of exclusion. That is, there is no  known cause or definitive test for it and when every other possibility is excluded the symptoms get labelled as ME. I have often wished that I had any other disease – something with a known cause, where it is not so easy for people to label you a fake or a lazy scrounger. This wish got even more intense when I went to see a psychiatrist after becoming suicidal with pain. His response was to ignore my depression and suicidal ideation and instead “diagnose” me with Chronic Fatigue Syndrome, which from his point of view is a mental illness, and prescribe exercise as the cure to all my problems.

Then four years ago I became diabetic too. It wasn’t unexpected given my family history and I adapted to it pretty easily, although I resented having to change what I eat. Since I was diagnosed my diabetes has progressed rapidly and a few weeks ago I went to see a specialist because despite insulin treatment I was responding unpredictably and finding it hard to control my blood glucose. He suspected that I had a form of diabetes called MODY and had some blood samples taken for a genetic test.

On Friday I got the results of that test back and everything changed.
I don’t have MODY, I have Maternally Inherited Diabetes and Deafness. (MIDD.) It’s caused by a mutation in mitochondrial DNA (3243 tRNA), specifically 3243A>G.

I spoke to the diabetes consultant this morning and he confirmed that what I have is the mitochondrial 3243 A>G mutation. Unfortunately he is a bit clueless about the impact of that mutation outside of diabetes and he dismissed my questions about muscle pain and weakness and about issues with taking metformin. When I first saw him I had asked if my diabetes could be the cause of the muscle pain and burning pain that I have had for years, but he was adamant that it could not be, especially since I have been diagnosed with ME for much longer than I have had diabetes. He said that he had a couple of other patients with MIDD and they had no pain so that was that.

Apart from diabetes and deafness (The deafness part is only about 75% of cases) MIDD is associated with some other symptoms. From the information sheet at the Diabetes Genes website:

Myopathy (Muscle weakness): muscle problems of either weakness or cramps may be present in around 40% of cases of MIDD.  This generally involves proximal muscles (shoulders, buttocks and thighs) which are used when climbing stairs and presents as exercise induced muscle cramps or weakness.

 And

Metformin, a commonly used treatment in diabetes is probably best avoided as Metformin is known to interfere with mitochondrial function and the risk of lactic acidosis may be increased although this has not been reported to date.

From looking at what other people with this condition have said the pain and weakness is rather understated in the above quote. The following is typical of what is actually reported.

I’ve been feeling so, so tired recently with aching legs, and I can barely get out of bed and get dressed some days, most of the time I just want to lie on the sofa and sleep. I knew MIDD could make you tired after exercise, but I didn’t realise it could make you so fatigued after not doing anything at all!

Turning to The NHS Rare Mitochondrial Disease Service for more information I found this under General Information > Exercise

Because in mitochondrial disease the cells cannot make ATP in sufficient quantity, anything that requires a lot of ATP such as exercising a muscle will mean that the body will not be able to keep up with demand. This has two main effects; firstly the muscle will become tired sooner than normal and secondly the muscle makes other compounds such as lactic acid in an attempt to keep up with energy demand. This can lead to pain and cramp in the muscles and patients often feel “like they have run a marathon” even after only moderate exercise. The temptation is to avoid all exercise so that you never get to this stage, but this is not recommended for two reasons. Firstly, it is important for general fitness to exercise and as well as exercising the muscles it is important to keep the heart and circulation healthy. Secondly, there is good evidence that if you become very unfit this will adversely affect your muscles. In many patients’ muscles there is a mixture of good and bad mitochondria and the hope is that exercise can increase the good mitochondria, boosting the level of ATP back to normal and so avoiding symptoms. At this stage this remains just a theory and there are large trials looking in to this idea. At the present time our advice is to exercise regularly at a level that feels comfortable, but without pushing yourself to the point that your muscles become painful.

But that’s not all. The Rare Mitochondrial Disease Service has another perspective on the 3243A>G mutation. It is responsible for a condition called Mitochondrial Encephalomyopathy, Lactic Acidosis and Stroke-like episodes (MELAS). And it’s scaring the shit out of me.

The clinical features associated with this mutation can, as stated above, be very variable. We have a number of individuals who clearly carry the mutation who are completely asymptomatic. Other patients have very, very mild symptoms perhaps with a tendency to have diabetes or very mild deafness requiring no treatment. These patients might not be aware that they had the mutation apart from the fact that they were family members of somebody who had more serious disease. Some people with the 3243A>G mutation, also develop diabetes and deafness ultimately requiring the use of a hearing aid or requiring insulin to control their diabetes. Other patients have more severe involvement with muscle weakness sometimes affecting the peripheral muscles and sometimes affecting the muscles around the eyes. Finally there is a group of patients who do develop the MELAS syndrome, which is associated with episodes of encephalopathy . Encephalopathy is really the medical term for an episode that disturbs brain function. These disturbances can take the form of stroke- like episodes and/or seizures. This is a much more troublesome and difficult group of symptoms to control and clearly have a significant effect on people’s lifestyle.

My next step is to see my GP to talk about what all of this means for me and I will ask for a referral to the mitochondrial disease service. Unfortunately my GP is away this week so I will have to wait before I can sort anything out.
I thought finding proof of what is wrong with me would be a relief, but it’s not. Acceptance of my old diagnosis has given way to panic about my new one. All I have is questions swirling round and round in my head. The thought that keeps hitting me is that I wasn’t making this up. I wasn’t imagining it. People have been throwing out accusations and belittling my illness for so long that I had almost convinced myself I was a lazy fake, questioning if symptoms were real or just my brain tricking me. And now I know I’m not imagining it. There’s proof, right there on paper, but I almost don’t believe it. I want to feel relief but all I feel is grief.

Trapped

So many thoughts
So much I want to do

Fight the government
Save welfare and the NHS
Protect privacy and the right to protest
Write blogs about it all
Send a wake up call

I want to leave this bed
Travel to meet friends I’ve made online
Ride my motorbike again
Whizz through the countryside

I want to learn new technology
Go back to work
Make old computers work again
Be master of a server room once more

I want…
But no.
I lie here in bed
Pain
Exhaustion
A shower and some fresh clothes
All I can hope for today
Scream at the world
Silently
Through my smartphone

I am trapped
I am trapped

I hate telephones

DECT phone handsetI have always had a problem with talking on the phone, long before I ever encountered depression or anxiety as long term problems. People who know me might find that funny because I used to sell mobile phones for a living and I have had a smartphone since the days of the Nokia communicator. What they may not realise is that for me a smartphone is a pocket computer with an internet connection. I regard its ability to receive voice calls as an unwanted extra.

Unfortunately society demands that I do actually talk on the phone, so what is the problem?

Interestingly I actually find making calls for business or calls to services much easier than calls to friends or to people who I know outside of their job. When I worked as an IT technician, and before that selling mobile phones, I could quite happily phone someone to answer or ask technical questions, or to organise something related to work. I think this is because such calls have a defined protocol, a script. I know that I will go through certain phrases and steps in order. I can also call people who I talk to a lot such as my parents or my wife. The problem for me comes when I have to call a friend where there is no script or protocol. In such situations I don’t know what will happen or what I should say and my anxiety kicks in. This gets worse when I am unsure how well a person knows me, or if a person will recognise me or remember me, or will want to speak to me. Then my anxiety gets very bad and I am most unlikely to actually make the phone call at all.

I also hate answerphones. My mind tells me that this is silly, because at least answerphones are machines not people and so I should be less anxious about the whole thing. What actually happens is that I prepare myself to talk to a person, go through the script in my head, only to get a message demanding that I explain myself RIGHT NOW. The result is that I panic and say something stupid, or I hang up.

This whole problem is complicated even more right now by the physical health problems that I have and by the anxiety and mental health problems that I have suffered from for the last three years. On days when my fatigue and pain or cognition are very bad I just cannot speak on the phone. I may lack the energy to speak, or be unable to make the connection from thoughts to voice, or unable to complete my thoughts. (Which means I might be happily tweeting or chatting online but unable to talk on the phone.) Holding the phone for too long can cause extra pain in my hands and arms and back, and talking for more than a few minutes is exhausting. On top of all that, now I also get anxious about being anxious, and receiving a phone call can send me into a panic, which is why I often ignore calls from numbers that I don’t know. Unfortunately this can lead to things like me ignoring calls from my wife when her bike has broken down and she has borrowed someone else’s phone!

Cough, cough

It’s been a couple of weeks since my last blog post. That’s because reality decided to reassert itself in my life and I’ve been reminded quite forcibly that I am, in fact, ill. I never seem to notice when my health has been good until afterwards when it goes bad again and then while I am stuck in bed I realise that I’ve been out of bed quite a lot in the preceding few weeks. I’ve acquired a cold and a cough that has now turned into a painful chest infection. The result is that I have spent the majority of my time in bed for the last two weeks and my days are punctuated by fits of coughing that leave me seriously dazed afterwards. I visited the doctor today and started antibiotics so hopefully it will clear up soon.

I haven’t been completely inactive though. I’ve visited my doctor, which is a fairly big effort in itself for me. I have had quite a few phone calls with my solicitor dealing with aspects of my case against the DWP, and been sent mountains of documents to read to do with that. I have been to my first parish council meeting as a councillor, and managed to get drafted onto the planning committee and been to a meeting of that too. (Not actually as much work as it sounds.) I have even managed a few hours of computer gaming recently, something which I haven’t been able to face much while my mental health has been bad. The majority of my time though has been spent trying to stay awake but not really managing to do much more than slump in bed and stare at twitter, too tired to even tweet much compared to a few weeks ago.

And on top of that, I’ve been sent an ESA50 form – Limited capability for work questionnaire. It had to happen eventually, it’s been nearly two years since my last work capability assessment. The form arrived a couple of weeks ago and I think I subconsciously chose to bury it under a mess of paperwork so that I didn’t have to think about it. Unfortunately that means that I haven’t got very long left to go through the soul-destroying process of filling it in. I had better drug myself up and go and get on with it instead of procrastinating through blogging.

Unwanted movement

I haven’t written anything here about illness for a while because politics has been a bit overwhelming but today I have been thinking about unwanted movement. Not necessarily involuntary movement, but also movement that can happen without thinking about it. I move around quite a lot, and I find it very exhausting on top of my other illness. (I have ME/CFS, diabetes, migraines, depression and anxiety and a few other things.)

Here’s a list of the movements I tend to do.

  • Jiggle my legs
  • Jerk my legs forward
  • Rock my torso and sholders
  • Jerk my torso forward (bending at the waist)
  • Move my head side to side
  • Jerk my head side to side
  • Fiddle with objects – generally click, rotate, fold or twist things

In addition to the above I also have a few other intermittent problems which might be a result of whatever causes my movement.

  • Repeatedly clear my throat
  • Make small humming or grunting noises
  • Pick at my fingers and cuticles
  • Pick scabs
  • Tear at my lips

Restless Legs Syndrome

There are a few things that these could be attributed to. My official diagnosis for the leg movement is Restless Legs Syndrome and I have been taking pramipexole for a few years to try to control it. I don’t actually know if it has been successful at that, but every time I try to reduce the dose I get fairly extreme restless legs – worse than I had before the drug – as a withdrawal symptom.

Restless legs syndrome (RLS) is a neurological disorder characterized by an irresistible urge to move one’s body to stop uncomfortable or odd sensations. It most commonly affects the legs, but can affect the arms, torso, and even phantom limbs. Moving the affected body part modulates the sensations, providing temporary relief.RLS sensations could be pain, an aching, an itching or tickling in the muscles, like “an itch you can’t scratch” or an unpleasant “tickle that won’t stop”, or even a “crawling” feeling. The sensations typically begin or intensify during quiet wakefulness, such as when relaxing, reading, studying, or trying to sleep. In addition, most individuals with RLS have limb jerking during sleep, which is an objective physiologic marker of the disorder and is associated with sleep disruption. [Taken from Wikipedia]

I’m not convinced that what I have is actually RLS. I don’t get an itch, tickle or crawling feeling, but I do get an urge to move my legs which I can resist for a while but eventually have to give in to. It happens to me at any point in the day when I keep still for a while but especially when I am in bed. I’ve always had a problem with this, even when I was at school I found it very uncomfortable to keep still. (Although that was also related to pain when sitting cross-legged on the floor, something that I would now refuse to do but could not at school.)

Tics

My throat clearing and noises are probably tics, although I have never brought this up with a doctor and have no diagnosis for them. Tics are described by NHS Choices as follows:

Tics are rapid, repetitive, involuntary contractions of a group of muscles. They can occur in the form of either:

  • motor tics (bodily movements)
  • phonic or vocal tics (sounds)

Most tics are mild and infrequent and they may not even be noticeable to the person experiencing them or to others. However, some tics can be frequent and severe. Tics can also be a symptom of Tourette’s syndrome (see below).
Types of tics

Motor tics can affect any part of the body, but they often involve the muscles of the face, eyes, head and neck. These produce movements such as:

  • facial twitching
  • grimacing
  • blinking
  • shrugging of the shoulders

Common phonic tics include:

  • coughing
  • grunting
  • clearing the throat
  • sniffing

Some people with tics may be able to suppress (control) a tic for a short period of time, although this is said to be like trying to hold back a sneeze. They feel increasing tension until the tic is finally released. [Taken from NHS Choices]

To be honest, the description of increasing tension until the tic is released sounds like my restless legs too. An increase of tics in response to stress is mentioned too and I can identify with that. I have noticed that the sudden quite forceful jerking of my legs which often results in ramming my knees into the underside of my desk often increases when I am stressed about something.

Stimming

There is another possibility for some of this. Stimming. Stimming is described thusly:

Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner. Stimming is known in psychiatry as a “stereotypy”, a continuous, purposeless movement. [Taken from Autism Wiki]

I think stimming could be the cause because I am currently on a waiting list to see a specialist about possible Aspergers syndrome / Autistic Spectrum Disorder. If I am affected by this then it is very mild and I have mostly learnt how to work around the social anxiety problems involved however stimming remains a possibility.

The key for stimming is that it is voluntary. I think that rocking my torso may fall into this category, and maybe the picking at my skin and scabs. I actually don’t rock as much as I feel the urge to because I feel so stupid doing so, and embarrassed that my wife or anyone else might see it.

Dermatillomania

My picking at loose bits of skin, cuticles, lips, wounds and scabs is probably dermatillomania, which is a mental health problem that may be related to OCD.

Dermatillomania is defined as “repetitive and compulsive picking of skin which results in tissue damage. [Taken from Wikipedia]

I’m not sure there’s anything more I can say about it other than this quote. This problem has at times left me with horrible bleeding wounds all over my fingers and lips. I haven’t found it so bad at the moment which may be because of the anti-depressants that I take although I have been picking scabs on my back, head and shoulder which as a result are not healing up.

Ultimately I do not know why I do any of these movements. I do know that they intrude on my life, prevent me from sleeping and resting, make travelling in cars and buses hell and make sitting still painful. I have to choose where I sit based on being able to get out to stretch. I had to choose a car which had lots of leg room and cruise control because otherwise I would end up in pain from not moving or crashing the car from jerking my foot on the accelerator. I find these movements highly embarrassing when out in public and I wish they would go away.

The continuing saga of my electric wheelchair

I have to use a wheelchair for most journeys outside of my home and car. Because I do not need one inside the home I do not qualify for any help at all from Worcestershire Wheelchair Services even though an NHS occupational therapist has agreed that I need it, and I get High Rate Mobility Allowance and a Blue Badge for parking because of my inability to walk. I use my DLA to lease a Motability car and I bought my own manual wheelchair which I can only self-propel about as far as I can walk.
My current power wheelchair
My current power wheelchair
I would benefit greatly from an electric wheelchair because at the moment I require someone to push my wheelchair. With an electric wheelchair I would be able to visit places without my wife. My wife intends to go back to work and I won’t be able to go anywhere without her that requires walking more than few metres from my car. Even the medical appointments will be difficult.
After all the drama detailed in previous blog posts herehere and here I applied to a local charity that provides grants for people in and around the area including helping with mobility. They aren’t a disability charity and so they don’t have a great understanding of my problems. They seem convinced that because they have purchased mobility scooters for several people with my illness, that I should be able to get buy with a scooter too instead of an expensive electric wheelchair. My correspondence with them has dragged on for months since I first applied. When I first looked at a suitable chair to obtain a quote I asked about a second controller which would enable an attendant to operate the chair if I were too exhausted to. (This can happen after a long day.) The charity administrator immediately panicked on seeing this in the quote and demanded that I get my doctor to write a letter saying that I could safely operate a power wheelchair. This despite the fact that I drive a car! I had the second controller removed from the quote anyway when I realised that it cost about £500 extra but they still insisted. Obtaining that letter took three months, after which I was sent another letter which I detail here.
Further to your application for an electric wheelchair, we have now received confirmation from your Doctor that you are suffering from ME and would benefit from a mobility vehicle.
However the electric wheelchair you have requested has been quoted by INDY at £2410.22 [This is the price with 2nd controller] which is greatly above what trustees would normally consider for someone with your health grounds. In similar circumstances they have purchased a Aerolite Scooter in the region of £800 which easily fits into the boot of a car.
In order for Trustees to consider your request we would ask that you obtain a report from an independent Occupational Therapist as to why such a specialist chair is necessary for your condition.
I did contact my NHS Occupational Therapist but she declined to provide such a report. I have no idea where to go to pay for a report or if that is suitable so this is where it has stopped for the last two months. I have already considered and tested mobility scooters. They are unsuitable for several reasons:
  1. My size 12 feet do not fit within the footplate of the more affordable smaller scooters and instead sit awkwardly across different levels of the scooter.
  2. The seats on all the scooters that I have tried do not give enough support to my back, leading to pain.
  3. Stretching my arms out to the handlebars puts pressure on my wrists leading to increased pain, and using the arm rests causes me to slouch forward, hurting my back again.
  4. I would have to leave it outside some shops, which is no good as I cannot stand and walk for long enough to queue or browse the shelves for what I need.
  5. I cannot take a scooter on a bus. They’re not allowed.
A larger scooter would solve part of this problem including footspace and seat height, but would cost more and still hurt my arms and hands. The one I tried was also too heavy for me to lift into my car and possibly too big to fit. A proper electric wheelchair would have a good seat, proper arm support, a controller suitable for the level of pain in my hands, enough space for my feet, would be allowed in shops and other places, and could go on buses.
Since my application I have actually bought a second hand electric wheelchair for £300 but while useful on occasion it is far too bulky to go in my car and the batteries are nearly worn out and will soon require expensive replacements. If this local charity insist they will only pay for a scooter then there really is no point in my getting one. I’ll have to use my current chair until it dies for journeys on public transport and will have to have someone with me to push when I go out in my car. I’ll be writing to the charity with all of my reasons and I will also suggest to them that they purchase a slightly cheaper electric wheelchair, although finding one that is both cheap and reliable will prove tricky.