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I hate telephones

May 14, 2013 By 5 Comments

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 stupid, 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!

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Cough, cough

April 26, 2013 By 1 Comment

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.

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Unwanted movement

February 5, 2013 By 2 Comments

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.

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The continuing saga of my electric wheelchair

January 3, 2013 By 1 Comment
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 here, here 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.
Dear Mr Sumpter
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.
Squeezing onto a mobility scooter

Squeezing onto a mobility scooter

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.
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Reassessing chronic illness

December 14, 2012 By 2 Comments

A thought occurred to me this morning. I know a hell of a lot of people who were labelled with the wrong diagnosis for years before receiving the correct diagnosis. Several people I know were diagnosed with ME before later discovering that they have EDS. Others have been told that their symptoms are somataform disorder (All in the head) and all further symptoms ignored even when life threatening. (Even somataform symptoms can be life threatening.) Plenty of people accumulate conditions and symptoms but never receive a further diagnosis for it, instead having everything attributed to the first illness or ignored. For example I had burning pain for a couple of years before being told that it was diabetic neuropathy rather than being caused by my ME.

The Scream - how chronic illness feels

Given that original diagnoses may be wrong, new symptoms may be missed, new tests and new treatments become available, and new research is undertaken, it makes sense to me that after a long period of chronic illness people should get a chance at uncovering new diagnoses and accessing new treatments. I would like to see patients automatically being offered a chance to start again with a blank slate after a decade of serious illness. A new GP (or perhaps two or three) would assess the patient, new tests would be run based on the latest research, and referrals to new specialists could be made. The latest treatments could then be offered. This could be life-changing for a huge number of people. It would be important for this to happen without referrence to notes except where life-threatening treatment needs to be maintained and without patients pointing the doctors towards their preferred diagnosis. There would also have to be patient choice and other safeguards at the heart of this.

The scheme would be expensive, of course, but it could well also pay for itself in replacing ineffective treatments with treatments that work and in enabling people to restart their lives. And in any case, MPs seem adamant that all articles and disability changes often enough that we have to be reassessed for benefits every year, so I don’t see how they can complain about the cost of this scheme.

What do you think?

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Whir Whir Whir

November 27, 2012 By 1 Comment

Too much going on

Can’t stop thinking

Can’t do one thing at a time

Irritable

Angry

Even more opinionated than normal

Don’t care who I upset

Swearing on Facebook

BUY ALL THE THINGS

EAT ALL THE THINGS

SHOOT ALL THE THINGS (In Borderlands)

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Mental illness is more disabling to me than physical illness

August 1, 2012 By 12 Comments

I have reached the point where mental illness is more disabling to me than physical illness. Before I became depressed I was physically ill with ME, diabetes and migraines and I was limited by fatigue and pain but I could write, I could repair computers, and I could focus to read or watch TV, as long as I planned around my illness. With regular rests and flexible timing I could engage with the world and get some things done. Now, though, depression and anxiety steal my focus for hours at a time and prevent me from completing even the simplest task. I start writing blog posts and manage one line. I start watching TV and manage 2 minutes of a half hour episode. I start games then give up. I drive to shops or friends and then can’t get out of the car. I look at my forms for help with power wheelchair costs and freeze up. The phone rings and I pull the duvet over my head.

My physical and mental illness seem to feed off each other too. If I reach a point of (even more than normal) exhaustion then I will also become overtaken by despair. Depression and anxiety also make it impossible to work towards improving my physical health. I need to get a routine and start pacing my activity but mental health problems mean that I can’t even think about doing things when I need to.

I’m not sure that I have a point in this blog post other than wanting to rant a bit. I suppose if anything my point is that depression is not some minor inconvenience. It is a real, crippling illness that will destroy a life just as effectively as any physical problem.

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Things that illness has stolen from me

July 19, 2012 By 3 Comments

I can’t:

  • Walk more than a few steps
  • Ride my motorbike
  • Go out to work
  • Concentrate long enough to write
  • Concentrate to read a book
  • Sit for too long
  • Stay awake very long
  • Be happy
  • Eat sweets or crisps without anything nice without going blind and having a stroke
  • Have a day without pain

Fuck life. I want out.

 

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Not much going on

July 17, 2012 By 2 Comments

It is now over a month since I last wrote anything on this blog. I’m used to writing weekly or even daily but my mind has just not been up to writing anything. I have still had discussions and come across ideas that make me want to write, but actually converting those thoughts into written words has been beyond me. In fact just about every task has been beyond me recently. I have always had a problem with completing tasks but with this depression I haven’t been able to even start most tasks. Asking me to do something is a guarantee that I won’t be able to.

The problem is that at the moment I don’t have any of my illnesses under control. My sleeping pattern is basically nocturnal, and adding on the extra hours that I need to get from waking up to actually moving I have been getting out of bed between about 3 and 5pm each day. My fatigue is generally worse when I’m awake, as is the drowsiness, and hours out of bed are very limited. My blood sugar is out of control whether I eat sensibly or not and most of the time I’m not eating sensibly because the more depressed I am the more rubbish I eat. And the depression. That’s pretty much back to crippling again. Can’t face anything, don’t want to talk to anyone, bouts of despair and thoughts of dying.

I have managed occasional distractions. I went to a party in London a few weeks ago. I visited family to help with their new house. I went out for the day last Saturday and helped buy a laptop.  I have driven to the shops and back. Even so, most of my time has been spent drowsy or asleep and not doing very much.

I know what I need to do. I need to start pacing, plan activity, and control my diet. The problem is, I can’t face doing that.

Back to sleep then.

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Pain pain pain

May 13, 2012 By 3 Comments

Last night was a bad night. I had a little less than three hours of sleep and  by 7am my pain levels were high. Not so high as to have me curled up whimpering and shaking as sometimes happens, or enough to make me cry out, but enough to ensure that I definitely couldn’t go back to sleep and found it hard to concentrate on anything else.

It’s my feet that hurt the most today. Specifically, the tops of my feet which are aching horribly, as are my fingers and the backs of my hands. My arms hurt too, with the aching seeming to branch out from my hands and shoulders into the arms. Strangely, my elbows don’t hurt.  My legs feel like I’ve been beaten up or possibly run over, which is about normal for me but with some extra cramp and shooting pains in my calf muscles. The cramp occasionally stabs at the underside of my feet too. Now that I’m typing I realise that the muscles in my thumbs hurt quite a lot. My usual constant headache might be in the mix somewhere but it’s been masked by more pressing pain elsewhere. Over the last few minutes a familiar burning pain has overtaken the aching and started to spread through my body. It’s the burning that makes me curl up and wish to die, to scream in pain. I desperately hope that it stops before that point. Back in early 2011 I had the burning all the time and I had to take pregabalin (Lyrica) to control it. I didn’t enjoy either part of that experience.

I have had drugs to try and help, of course. At 7am I had 500mg Naproxen, 1g Paracetamol and 30mg codeine. It made no difference that I can tell. I could take more codeine but the result will be that I can’t think and get really drowsy but lie awake in a nauseous opiate haze without actually sleeping. I have distracted myself through the last hour by re-watching episodes of The IT Crowd but my concentration is slipping now and I’ve turned it off.

I get pain most days although not to this extent. The pain has always been put down to my diagnosis of M.E. with the more recent burning possibly being diabetic neuropathy but while it’s a name for it, it doesn’t actually explain what’s causing the pain. It’s just labelled and then ignored. Maybe if I knew why I was in pain it would be easier to accept. I know lots of other people who have similar experiences so I don’t really know why I’m writing this other than to have a moan. Maybe that’s enough of a reason.

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