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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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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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Iain Duncan Smith is proud of getting people off benefits

November 23, 2012 By 22 Comments
IDS - "We've heard enough of you"

“We’ve heard enough from you.”

Owen Jones confronted Iain Duncan Smith with the names of two people who have died as a result of the work capability assessment. He did not react well. I urge you to watch this video of the last part of Question Time, particularly the last minute if you want to see what IDS is really like.

“Hang on a second, we’ve heard a lot from you. Let me tell you something. I didn’t hear you screaming about two and a half million people who are parked, nobody saw them for over ten years, not working, with no hope, no aspiration, we are changing their lives, I am proud of doing that, getting them off benefit is what we are going to do.”

Iain Duncan Smith is proud of getting people off benefits. Never mind that there is no work for them to go to even if they can, and that the way lives are being changed is by sending people further into poverty and homelessness. Not only that, but he thinks that being “parked on benefits” and left alone is a bad thing. Well those of us on permanent sickness and disability benefits do have hopes and aspirations. We hope to not have too much pain today and we aspire to getting the care that we need so that we can undertake something entertaining that isn’t lying in bed waiting to die. We probably don’t aspire to being a rich Tory, which is probably similar to being dead in the head of Iain Duncan Smith. As for nobody seeing sick people, now they are being reassessed so frequently that they are committing suicide. Winning an appeal at tribunal often leads to an immediate call to another assessment.


My wife has just received her FOURTH ESA50 in 2 years and her second in 4 months. SHE HASN’T EVEN HAD THE DECISION FROM HER LAST ONE! #wca
November 21, 2012 11:24 am via TweetDeckReplyRetweetFavorite
@crazybladeuk
Wayne Blackburn

Dead people don't get benefits

Dead people don’t get benefits – cartoon by @dochackenbush

Further Reading

Brian Mcardle: Atos benefits bullies killed my sick dad, says devastated Kieran, 13

Karen Sherlock: How many more disabled people will die frightened that their benefits will be taken away?

Karen’s Story – RIP Karen Sherlock, Disability Rights Campaigner – Died June 8th 2012

Hundreds more: The People’s Review of the Work Capability Assessment

 

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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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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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How am I? A personal update

March 1, 2012 By 2 Comments

Sometimes it’s easy to forget that this is my personal blog. I have written so much recently about workfare, welfare reform and politics that I haven’t had time to write about anything outside of those. I have always found it useful to write down what I have been going through, to help get my own thoughts in order and so this is one of those blog posts.

A handful of pillsIn the last few weeks I have been trying reboxetine in addition to the escitalopram I was already taking to try to reduce my panic attacks and anxiety. Two days after I started taking reboxetine I spent a day in the worst depression that I have had for a few months and was suicidal as well as being really really horrible to my wife. This is always a possible temporary side effect with a new anti-depressant and fortunately I was much better after that. The new medication did seem to be working for a couple of weeks but in the last week I have had two big meltdowns, panic attacks leading into spiralling depression again.

Since referal to a psychologist seems to be rare and slow in my area, last week I started to attend a cognitive behavioural therapy group which I have been waiting to start for a few months. CBT (and I may be wrong here) appears to be a way to learn to see and understand the problematic thoughts and moods, and then provides a method of changing them. CBT is currently the most popular therapy for depression and anxiety. It isn’t without problems, and it isn’t for everyone. One person said to me today that CBT is “feels like brainwashing” and I think he is right, but it is self-brainwashing.

CBT has a bad reputation among patients with M.E. because many psychiatrists believe that M.E. is a somataform disorder – that is, they believe that M.E. is a set of physical symptoms caused by mental illness. Now this isn’t impossible in some cases, although I think in most cases it is unlikely given that people with M.E. can often overdo things on a good mental health day and still find themselves stuck in bed for days recovering from their exertion. More common is that depression arrives after and as a result of becoming sick with M.E. Anyway, since M.E. is a physical neurological illness which can be partly controlled by pacing and learning when to stop, the common fear is that CBT teaches M.E. patients to push themselves too far and end up enduring serious health repercussions. This bad reputation of CBT for people with M.E. is the reason why I changed my psychiatrist and checked that the CBT group wouldn’t attempt to interfere with my M.E.

Although this group is officially a CBT group it seems to be more than that.  We will be taught how to use CBT and Mindfullness, and we are working through a book called Mind Over Mood. (Affiliate link.) We are being taught some helpful things alongside that too. The group meets for two hours per week over twelve weeks and there are six of us, plus a psychologist and a community nurse. Group therapy provides the chance for us to support each other too and I have already found this useful in the first two sessions. While Twitter has been a lifeline by allowing me to be in contact with a lot of people in similar situations it is nice to discuss these things in person. (And I might be dragging some of these people on to Twitter!)

Apart from the depression and anxiety taking a turn for the worse again my M.E. has been significantly worse for a while. I currently can’t walk very far at all and have had to use my wheelchair a lot when going out as well as rely on my dad to drive me to medical appointments. I have been stuck in bed for the majority of most days because sitting in a chair is extremely draining. Unfortunately the two hours I have to spend at each CBT group session is very draining and I have had a lot of pain since yesterday’s session.

So things aren’t so great at the moment. Despite that, I am looking forward to going to QEDCon next week and then spending a week staying with my sister. When I get back I hope to collect my new car which I hope will allow me to leave the house a bit more often. I will finally be able to stop relying on my dad to drive me around and I also intend to start going swimming when I can drive myself to the pool, and to take a few trips to meet friends around the country. I just need to build up some strength for that one.

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Review: Tabtime Super 8 pill reminder

February 26, 2012 By Leave a Comment

Tabtime Super 8 - closedI have been using this pill tray for a few weeks courtesy of Eleanor Independent Living Aids. The concept is simple but incredibly useful – it combines a pill tray  and alarm clock in one.

The Super 8 is a blue rectangular box made of two halves folded together in a clamshell format a bit like an older folding mobile phone. From the outside there isn’t much to see apart from a battery compartment on one edge and a red LED light on the front. The Tabtime is easy to open: the right edge has tabs with cutaway parts to allow easy opening with less-than functional fingers and the magnet which holds secures the Tabtime has just enough force to keep it shut but opens easily with minimal pressure.

Tabtime Super 8 - tabs for opening

The Tabtime opens to reveal a pill tray on the right with eight compartments and a large clock on the left. The pill compartments are again easy to open, with a tab protruding from the edge of the lid which can be lifted easily. For the most part the lids are secure, although I did find some becoming loose when opening the opposite compartment. This isn’t a problem when the device is closed as the compartments are kept shut by the folding of the two halves. I found the compartments are about the same size as my seven-day pill tray with enough room to hold quite a few tablets, or four of my huge Metformin tablets.

Tabtime Super 8 - open

Turning to the clock then, it has a nice large display which shows the the current time, and it has several buttons for setting the timers and a volume switch with options for Hi and Lo. Personally I have the volume always set to high as I have found that the low setting is not audible from the next room, or when the Tabtime is kept in a bag while outside. The high volume setting is loud enough most of the time but could do with being a little bit louder.

The Tabtime very usefully has a timer for every pill tray, eight in all. Used in this manner it is possible to have an alarm go off at the same time every day for each set of pills. On opening the Tabtime up after an alarm has sounded the screen shows a number along the top edge to indicate which alarm sounded and which compartment to take pills from.

If like me you don’t always take pills at specific times, painkillers, for example, there is also a countdown timer which I keep set to four hours. After taking my painkillers I can bring up the countdown timer on the screen – an action which unfortunately requires nine presses of the Mode button to cycle through the eight alarms – and press the Minute button to start the countdown to my next dose. Used in this way it does not give the benefit of indicating which pills to take, but that isn’t a problem if working through the compartments in numerical order.  The red light on the front of the Tabtime is very useful since it starts to flash when an alarm sounds and it will keep flashing until the Tabtime is opened, even if the alarm sound stops. That makes it easy for me to know when I can take painkillers by looking for the red light even if I miss the alarm.

Of course eight compartments isn’t enough to replace my seven day pill tray. I tend to use my larger tray as usual, but keep painkillers in the Tabtime where I can make use of the alarm. When I go out I can fit my painkillers and all the other pills that I need for a day in the Tabtime and keep it in my bag.

Seven day pill tray full of pills

The Tabtime isn’t perfect. It could do with a louder alarm, and perhaps an extra button to access the countdown timer in a less tedious way but it is very useful as a reminder while at home and for carrying pills when I am out. It serves its purpose very well and if you have to take a lot of pills then I can thoroughly recommend that you get one.

You can obtain a Tabtime Super 8 from Eleanor Independent Living Aids for £20 including postage.

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DLA Story

January 16, 2012 By Leave a Comment

I’ve been sick for more than a decade. I have struggled to keep working for as much of that as I can, even starting my own computer maintenance business, but I have spent a lot of time unable to work. A few years ago I claimed Disability Living Allowance as I had mobility problems and needed care. I was initially turned down and although I eventually won on appeal the process took more than a year.

That was awarded for two years from the date that I first applied and so it soon ran out and required a fresh application. Unfortunately I was too ill to face completing the fifty page form, collecting medical evidence and going through the medical check again and since I was working, I let it go despite being entitled to it.

In August 2010 I became seriously ill once again and eventually in October 2011 I accepted that I wasn’t going to improve any time soon and so I applied for DLA again. This time I received help from the Worcester branch of the DIAL network who asked me questions and filled in my forms for me. The process was still long and exhausting but at least it got done. A few days ago I heard that I had been awarded DLA with a high rate mobility allowance and middle rate care allowance for a period of five years. I was taken by surprise about this as other people with M.E. often have to take their application to appeal.

DLA will make a huge difference to my life. The first thing I did was use the 17 weeks of backdated DLA to pay off my credit card, which had been racking up debt because of the extra costs of living with my illness. Last week I ordered a car from the Motability scheme, which I will pay for by handing over all of my DLA mobility allowance – about £50 per week – for the duration of the three year lease. Having a car will mean that I can leave the house – which I rarely leave at all apart from to go to medical appointments – and I will be able to go shopping with my wife, collect my own medicines from the pharmacy, visit the doctor and the hospital without having to take my father out of work to drive me there, and visit friends who I can only talk to over the telephone or internet at the moment. This car will open up a whole new life for me.

In addition to the car my DLA will pay for things like pre-prepared food that I can access when my wife is unable to be at home to care for me, and to cover the costs of the more expensive specific foods that I need if I am to keep my meals down. It will also pay for extra energy costs for the hot baths that I need to get some pain relief in my aching burning muscles, and air conditioning when the summer heat makes me so ill that I collapse.

In short, my DLA will be life-changing. The government’s plans to replace it under the welfare reform bill and cut 20% of the cost by withholding it from people that desperately need it are a dangerous and heartless thing. Please, sign the petition to pause the welfare reform bill.

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