A minor improvement

I have spent the last three weeks almost entirely stuck in bed, more ill than I have been in about six years. I saw it coming, as after more than ten years with ME I have learnt to recognise the signs and I even said in a blog post on the 3rd of January that I was expecting it. Given that I had flu in November, then another variant of flu in December, then went to visit family for Christmas, I was obviously going to pay for all that exertion. By the time of our new years eve party I was already feeling it, and spent several hours of the evening sitting quietly away from everyone else in a different room.

Well after two weeks of leaving my bed only to visit the bathroom (and crawling to it) I managed to spend a bit of time out of bed each day for the following week. I am supposed to divide up my day in to patterns of rest and activity but I have trouble in pacing myself so I tend to stay out of bed until I have no choice but return to it. Today I have spent about seven hours out of bed and even ventured out of the house after being tempted with a full English breakfast at the local cafe! It was only 200 metres away but it was still a walk.

If I keep going in this vein then I am hopeful that I could be back to being out of bed all day after another week or so and maybe even back to work the week after, if I don’t overdo it before then. More importantly, I hope that I can ride my motorbike soon. It’s been six weeks which is too damn long.

Yamaha Diversion 900
My motorbike. I miss it.

Pleasure and pain

This post is dedicated to One month before heartbreak.

As I was reading a blog post at Diary of a benefit scrounger just now I realised that I had forgotten to mention a very important point in my last two posts. The tabloids specialise in denouncing people for having fun while claiming benefits. I am sure you have seen stories in the past of people exposed for claiming benefits while being well. Tabloid journalists take a malicious glee in this sort of story. Neighbours report neighbours for trivial matters.

Those stories cause disabled people to live in fear. Fear that if they do anything seen as enjoyable, anything that pushes their limits at all, they will be denounced. They fear having their benefits taken away on the say-so of a benefit investigator with no medical qualifications and a report from a neighbour that knows nothing except that they claim DLA.

“So what.” you might say. “They shouldn’t have been claiming. They had it coming.”

Wrong. Nearly every time, absolutely wrong. DLA is incredibly hard to claim. The forms, the evidence required, the medical examinations by unqualified people with targets that aren’t in your favour, the stress in getting through multiple rejections to the appeal mean that just 0.5% of people receiving DLA do so fraudulently. Benefit fraud does happen, no one can deny that, but the amount of fraud is so tiny that you are unlikely ever to see it if it were not for the tabloids.

But does receiving DLA mean that someone should never have fun again? Of course not! For most of these people, enjoyment comes at a cost. A cost that you will never see. So do most of the household tasks that they might manage, so does going to work, for those that manage it. Every activity undertake by a chronically sick person results in a penalty from their health later. Going out for dinner costs health. Taking a bus costs health. Playing with kids costs health. Laughing with friends costs health. Going to college costs health. Going to work costs health. The thing is, those things are a persons own choice. Not yours. Not the benefits investigators. Not the nosy neighbours.

Take my sister as an example. She has ME, like I do. She came to visit us after Christmas, and she did so at great cost. Taking the train, staying away from home and spending time around people with little respite caused a great deal of harm to her health. She knew that it would take days to recover. But that was her choice to make.

So next time you see someone doing something that you think they shouldn’t, don’t make any assumptions. And when you or those around you become sick and have to make such horrible choices between enjoyment and health, you had better hope that others grant you the same courtesy.

My dad, working through the pain

This is my second post dedicated to One month before heartbreak. The first is here: Invisible Illness, Invisible Benefits.

Today I am not going to write about me. I am going to write about my dad.

My dad used to be a plumber. He was good at his job and worked very hard to support us. In 1992 he seriously injured his back while lifting a boiler and suffered a prolapsed disc. The injury left him unable to sit or stand, and able to move around the house only on all fours. For months after his injury he spent most of his time in bed. Since my brother had just been born and I also have two sisters, my mum was caring for him and looking after us all. I don’t know how she managed it – I certainly wasn’t any help, I was glued to my computer the whole time.

My dad was sent for surgery in mid 1993 and he had a micro-discectomy to trim the disc back. It was successful, and he was able to walk again although with some discomfort. Not all was well though, and scar tissue formed and started to press on nerves in his back. Although physiotherapy helped, that remains a problem to this day. He was also found to have legs of differing length and a spine that is deteriorating, which has led to upper back problems that prevent him lifting much with his arms. He is now two inches shorter than before his injury. Ever since 1993, then, he has been able to walk at most about forty metres, with the use of a walking stick, before experiencing severe discomfort, i.e. pain.

In 1995 my dad started to study to fill the time. He started a BTEC course in computing and electronics at the local college, where he was allowed to go straight in to the second year because of experience from before he became a plumber. He went on to study for a degree in computing and multimedia on a mostly distance-learning based course. On the occasions when he did have to attend classes he was forced to travel on the bus for more than an hour in each direction, something that was very uncomfortable for him.

He eventually found it difficult to continue on the degree course because of his dyslexia, and so cut it short of a degree but left with a DipHE. He then went on to take a part time job as IT technician at the local college, even though he was not expected to work and could have continued to receive Incapacity Benefit. At that time he claimed Disability Living Allowance and since he clearly could not walk any distance or lift anything, or carry out activities necessary for living, such as cooking, he had no trouble getting it. With the help of DLA he acquired a Motability car which meant that he could at last leave the house without enduring pain from using public transport.

That job ended and was followed by a brief period of being too ill to work again but – again without being required to – he applied for a job repairing computers at the headquarters of a major computer company that was based locally. He was rejected twice but on the third application he enlisted the support of a disability officer at the job centre. The disability officer managed to get my dad into an interview and persuade the company that they would receive support for hiring a disabled person. He got the job.

The help that he received at this point was excellent. The Access to Work scheme provided him with a top of the range chair with adjustable supports all over the place, which made it possible for him to spend more time sitting to work. The company built – yes, custom built – a workbench in the computer repair workshop which placed equipment at exactly the right height. He did still had to work around some things such as getting colleagues to lift heavy computers, reaching for books on high shelves, and finding his own trolley to transport the computers. Even with all the help and adjustments working there caused him plenty of pain and detracted from his health. He loved the job though, and remained there for about ten years until the company went bust. After that he was unemployed and looking for work apart from six months spent repairing iPods, a job so low paid that he brought in less income than when on Job Seekers Allowance.

Just over a year ago my dad and I set up a computer repair business together as our only real option for finding work. Both of us are unemployable, he with his inability to walk or lift and his severe dyslexia, me with my unpredictable working hours and occasional weeks or months off sick. A little government help has been available, particularly Self Employment Credit, but mostly we have created the company from scratch with no money to invest. Unfortunately, since our new business is not providing any income as yet, my dad has had to take a part time job collecting cars that have finished their lease and so is less able to focus on the business. He loves repairing computers though, and after a day driving he will come back to our office and spend hours on that too.

And so to my point.

Despite being visibly disabled enough that he could spend his whole life receiving Incapacity Benefit and DLA, my dad has always chosen to work. Working has caused him pain and detracted from his health but he does it anyway. He pays his taxes and his National Insurance, and did so for many years before and after becoming disabled. He has received help in return: it is DLA which has enabled him to work. Without it, he would not have a car, and without a car he would not have been able to travel to any of his jobs. There is more that could be done – he would quite like a folding mobility scooter which would allow him to do more at his driving job, since he misses out on some available work through being unable to walk to cars in the yard to move them. Such a folding scooter costs about one and a half thousand pounds, and he has no hope of getting one. Instead of any government help to get this scooter, which would lead directly to him working more, earning more and paying more tax, he is instead facing an uncertain future. DLA is likely to be replaced with a new benefit that is designed expressly to cut government expenditure on such benefits by a third. He would be re-assessed, and faces a loss of at least part of that income, which puts his car at risk. If he does lose that car then he will not be working any more. He will be stuck at home. My mum also relies on that car as she is disabled too with various complications of diabetes, so this will be harmful to both of them.

Government cuts to disability benefits are likely to prevent my dad from working and become what the Daily Mail would term “A burden on the tax payer.” Does that make sense to anyone except a conservative government minister?

Invisible illness, invisible benefits

This post is dedicated to One month before heartbreak.

Hi, I’m Steve and I have an invisible illness. I have M.E.

I have had ME for just over 10 years now. My ME is somewhat variable. I have had cycles of months of being quite well, with perhaps 80% of my health, and months of being so ill that I barely left my bed. As you can imagine, this has made it quite difficult for me to hold down a job and so I have often had to rely on Incapacity Benefit and Disability Living Allowance.

Unfortunately, those two benefits are even less reliable than my health. The first time I needed incapacity benefit was while I had been working part time in a mobile phone shop. I went off sick again and became so ill that I spent 95% of my time in bed. I immediately received Statutory Sick Pay. (SSP) All well and good so far. Then I reached six months of being ill and SSP ran out. I had to apply for incapacity benefit.

The biggest problem that I had at that time was the application form. I recall it being large, somewhere around fifty pages. I remember trying to write on it but experiencing immense pain when I did so. I enlisted my wife to do the actual writing which solved that problem.  Then I waited. And waited. My wife was working at the time, but we both had student loans, overdrafts and credit cards. Already under severe financial strain from my loss of income, the delay in receiving incapacity benefit was the final straw. I was forced to file for bankruptcy, and I took my wife with me. I still feel horrible guilt about that today. After the bankruptcy we moved in to a flat that we shared with a friend I knew from university. Unable to leave the flat most of the time, I spent all of my good hours in chasing my benefit. Phone calls, letters, advisors that knew nothing, that could give me no reason, that promised to chase it up but never called back.  Eventually after months I was told that my incapacity benefit had been approved. I received a backdated payment, months worth of income! Of course it was too late to be any help in buying food or paying rent while we were struggling to pay and going bankrupt.

After the struggle for incapacity benefit, my basic living income, was complete, I turned my sights on Disability Living Allowance. (DLA) I knew this one was going to be difficult. The criteria for receiving DLA were not set with variable and invisible illnesses like mine. Although my daily life, care needs  and mobility were as severely affected as people with visible physical problems, the problem lay in convincing the decision makers of that fact.

And so I commenced on applying for DLA. The form made the previous incapacity benefit form look like a walk in the park.  It was HUGE. It was terrifying. It asked questions about everything, and I mean everything, about my illness. The minutest details of how I get myself food, take medicine and go to the toilet were all needed. Doctors reports were needed. It took me two months to summon the energy to get through it all. The form was just the beginning though. After I submitted it there was silence. After a little chasing up they eventually informed me that I must have a medical assessment. (Why, I don’t know. Obviously the GPs that write reports for them are not to be trusted.) The date of the medical examination was set for a few weeks away, at 8:30 in the morning which was just about the time that I would have managed to fall asleep after a night of insomnia.

The day of the examination came and the doctor arrived. He immediately took a condescending tone and a harsh manner with me, even as I was struggling to open the door and let him in. A bad start. Then it got worse. The questions came thick and fast. Everything covered in the application form was asked again. Already tired, this was bewildering and literally painful to go through. It couldn’t get any worse than this, could it? Yes. Yes it could. Questioning over and with me barely able to move after the onslaught, I was ordered to stand. “Raise your arms” I was told. I struggled to comply, pain washing through my body. “Lift your left leg.” I collapsed, dizzy, in pain, no energy, but the impossible orders continued. After some time, an amount that I cannot remember because of the extreme exhaustion, he told me he was finished and he left.

Then there was the chasing. As before, it took all of my “good” time to try to find out what was going on. No communications came through. Eventually, months after my application, I received the terrifying brown envelope. REFUSED. And the appeal process started. More forms. Letters explaining why I needed help. More silence. My memory of this period is hazy now, I think there was another rejection and another appeal form before my case was sent to a tribunal.

On the day of the tribunal my wife took the day off work and we were given a lift there by a friend. I remember sitting across the table from four stern looking people. They all had copies of my appeal forms, my medical notes. The sham of a medical assessment report. These people knew more about my medical history than anyone else. They asked me questions for an hour until I was visibly wilting, and then they sent us back to the waiting room. Finally I was called back in and informed that I would receive lower rate care. Success! Sort of. I had applied hoping for care and mobility allowances, but in the end I received a mere £16.05 per week. All of that HELL for sixteen quid a week. The only consolation was that they owed me that backdated for nearly two years!

All the while my attempts to claim DLA were going on, I was also still dealing with the Job Centre in relation to my incapacity benefit. Not content with simply allowing me to receive it and focus on recovery, I was required to attend an interview with a disability advisor every few weeks. Every meeting was the same. The advisor was friendly and we would have a good chat. We would bemoan the fact that I was required to attend these meetings even though the travel would set my health back and would need a week of recovery. We would look at what jobs I could do and conclude that no employer would take me with such an unpredictable ability to work. He would suggest an internet business since I had occasionally sold things on eBay. I would promise to look into it if I had the energy, and then I would return home to spend a week in bed.

I did start to recover to some extent. I managed to leave the house more often. I would have many good hours, but I remained largely unemployable because I could just not say which hours of the week I might be able to work. Then one day I received another terrifying brown envelope. I would be required to attend a medical examination to continue receiving incapacity benefit. An assessment at home was not an option, and I was told that I must visit them or lose my benefit. I won’t go into detail of the assessment here, but I will say it was not as bad as the previous one. I went in visibly wobbly and using a walking stick. The interviewer was not harsh but was not friendly either. I went home in a hopeful state. Silly me. A short time afterwards I was informed that I had been found fit to work. No account was taken of my unpredictable and variable symptoms.

I managed to find a job through pure chance. My friend that we shared a flat with had received a better job offer and he gave his boss a glowing reference for my computing abilities. I attended an interview where I was brutally honest about my illness and the possiblities. By amazing good fortune, I got on really well with the interviewer and we were good friends by the time I left the interview, and so I started a job as IT technician at a timber company.

Things didn’t go to badly at first. I managed to get there on time every day. (Well, 5 minutes late because of train timing, but that was allowed for.) I got through most working days and my boss was sympathetic when I turned the lights out to work or took rests in the office during the day. Outside of work, I was wrecked. All my energy had gone on the job and there was none left for home life. I spent much of my evenings and weekends in bed, whimpering in pain, if I even had the energy for that.

After a year my boss took a new job and I was promoted and hired my replacement technician. I liked that. My manager had had such an easy job compared to me! It wasn’t enough though. I started to get flaky, to miss work. I carried on working as much as I could. The operations director was also a good friend by that time and he worked things out so that I could do my job in the hours that suited me. Other staff and directors had noticed my flakiness and he defended me from them. He pointed out that I was good at what I did, that I achieved in 16 to 20 hours a week what other staff had sometimes not even finished. I lasted a few more months but eventually the crunch point came and I went off sick for a full two months. I still helped out where I could by answering emails and text messages. Around about that time I had to re-apply for DLA. I was sent a new form. They wanted everything from scratch! I just couldn’t face it again. I gave up, ignored the form and my DLA stopped. When I resumed work it was on the basis of 16 hours a week done from home or office. I was grateful that they didn’t fire me, but then they could not find any replacement that they would trust with their IT.

In August 2009 I resigned from that job following signs of imminent failure of the company and a rather stupid takeover attempt by the managing directors wife. It had got rather political and I felt personally attacked when the operations director was blamed for all sorts of things. For a long time my father had jokingly been saying to me that if I started an IT company then he would work for me. I resigned, moved back to my parents home town and together with my father started a business to repair computers. With both of us being disabled, we intended to build up the company and then hire more people so that we could both do only 20 hours a week. We received minimal help from the government but together we have built that company up and today we are starting to get regular repeat customers. Unfortunately business is not yet high enough to actually take any wages out of the business but that could be close.

Unfortunately I must end this story on a low point. In November I had flu, and again in December. Combined with too much activity over Christmas that has left me in a complete relapse and more ill than I have been since 2003. Customers are coming in but I cannot deal with them and my father is struggling to cope with it all. Yesterday was a better day, so I am hopeful that I will not be completely stuck in bed for more than a couple of weeks and then can get back to work.

If that doesn’t happen, I am stuffed. I will give up. There is absolutely no point in me applying for Employment Support Allowance, the replacement for incapacity benefit, and definitely no point in applying for DLA.  I wouldn’t get it, even while unable to leave my bed at all, and the application process would hurt me. Another medical assessment would set my recovery back for months. Disabled people were treated badly enough by the previous government, the actions of this one in cutting benefits and making the criteria even stricter are despicable.

A rather boring story

When I began to write a blog post on what is wrong with me recently, I started out to write a simple description of the illnesses I have and some of the symptoms so that I could share the link with anyone that was curious about me .  After an hour of writing and two thousand words I realised that what I was actually writing was a complete chronicle of my illness from school until present day. I have since written an outline of the whole thing that covers early minor illness, getting sick with flu and never recovering, then fighting to get a diagnoses, going bankrupt, fighting to get benefits. being given drug after ineffective drug, and eventually starting a business in the face of being unemployable, and my current relapse. It is likely to be near 10,000 words.

The question is, would anyone actually like to read that? I am not so bigheaded as to imagine that people want to read my autobiography. On the other hand I do want people to gain an understanding of M.E. and what it is like to live with.  So should I finish writing it? Should I post it as a series of blog entries? Or perhaps as a small dowloadable ebook?

The post I actually intended to write is here if you would like to know what illnesses I actually have in more concise form, and it also contains links to and a video of spoon theory which does an excellent job of explaining chronic illness to the uninitiated.

What’s wrong with me?

I’m ill. I suffer from several serious diseases. As such it shapes my life, and affects everything that I do and say. When I am talking to someone, sooner or later my illness comes up when I have to explain why my life is a certain way or why I cannot do something. Many of those people ask what is wrong with me, and since it is very hard to explain it every time especially on twitter, I have explained it here for future reference.

So here’s the official list of diagnosis.

I’ve had the migraines all my life. I get between one and four a week. The main trigger is fatigue, other triggers are red wine and some blue cheese. I get migraines with pain over the right eye, pressure throughout the head, tension in the neck, and aura including nausea, vomiting and bright flashing lights in my vision. I treat the migraines with Sumatriptan (Imigran) nasal spray which is fast and effective at stopping them.

I was diagnosed with Diabetes the day before my 30th birthday. Given my family history I had fully expected to become a diabetic one day but I had expected it to be at least another ten years away. I control my diabetes with tablets, but it is progressing absurdly quickly and so I may well be given insulin injections soon. Note to detractors and “it’s your own fault” idiots: I am not obese.

Restless legs is fairly common, affecting 1 in 12 people. I have extreme restless legs. It makes me move, twitch, stretch and convulse any time I am required to keep still, especially when trying to sleep or in a car. Combined with ME and an inability to move sometimes, it’s torture. It is a major cause of insomnia for me so that I am now afraid to even try to sleep. I treat it with Pramipexole which is a dopamine agonist aimed at parkinsons disease. It makes me feel horrible and sick, but if I don’t take it, my legs try to rip themselves off of my body.

Insomnia is an obvious one really. I don’t sleep when I should. It is quite debilitating in its own right since going to sleep at 6am makes it nearly impossible for me to get up and do anything at 8 or 9am. It is fueled by a natural obsessiveness in me that won’t give up on whatever I am doing just for sleep, but also by my Restless Legs and by an inability to switch my mind off and stop thinking, which is a common problem in those with ME.

I have had ME/CFS for 10 years now. Many people get ME after a viral infection such as flu. They simply never recover from it. I first got sick after being in bed for a week with flu. After the flu seemed to be clearing up, the exhaustion, the headaches and the muscle pain stayed on. Those are the primary symptoms of ME.

When I talk about chronic fatigue the words really don’t cover the reality of it. People use words like tired, exhausted, and fatigue all the time but they have no clue what it really means. When I say I am too tired to get out of bed it’s not hyperbole. I mean it. When I am that tired I can’t get the five metres from the bed to the toilet. When I am at my worst I cannot lift my head from the pillow or turn myself over in bed. If you have ever experienced sleep paralysis then imagine it continuing for hours. For the really unlucky ones it continues forever. One of the most frustrating things that people can say to me apart from “Have you tried…” is “oh, yes, I’m quite tired after work too.” I want to scream at them. You just have no clue!

The fatigue is not logical either. It starts about as low as energy levels can get so that every action is an extra effort. That effort must be gauged incredible carefully. Each action results in a bit more fatigue and in a bit more pain. Where most people could perform a physically demanding task for a day and then be refreshed by one nights sleep or perhaps a day off, when you have ME the refreshment doesn’t happen. A few minutes of extra effort can result in days of exhaustion and pain. Sleep can make things feel worse. The best analogy I can think of is that every bit of energy used must be borrowed from a loan shark. He isn’t forgiving. That energy will be demanded back the next day with menaces, and whatever you pay won’t be enough. The loan shark will be back again for more.

Other symptoms are many and varied. I have already mentioned fatigue, headaches and muscle aches. i also have burning pain in various muscles, brain fog, irritable bowel syndrome, problems with vision which appear when most tired, and more that I can’t remember.

Brain fog is worth explaining. Once again words are inadequate but it is often described as a head full of cotton wool or as thinking through treacle. Brain fog prevents me from remembering words that I need, from completing thoughts in my head, from finishing sentences that I am speaking. It’s frightening and horrible because it strikes at my own sense of self.  It is brain fog that can prevent me from speaking at all on some day

For me, my illness varies a lot. I tend to have cycles of relatively good (~80%) health and then relapse for a few weeks of months where things get bad. I had flu, the real deal, not once but twice in the last few weeks. Since then my health has gone steadily downhill and I am now in a complete state of relapse. I have barely been able to leave my bed for the last few days and have been in a lot of pain with burning sensations in my muscles. I would say that i have rarely been as ill as this in the past.

I wrote about how ME affects me every time I wake up in my article A morning with ME.

For a full understanding of how chronic illness affects me I recommend reading Spoon Theory by Christine Miserandino or watch the video below to see Christine reading Spoon Theory to a conference. This is the origin of the #spoonie tag that you may have seen me use on Twitter.

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Life with ME: My technology lifeline

I have M.E. It’s a crippling disease that robs people of their capabilities and their independence. Here’s a good video about it on Youtube. I am not as badly affected as some people with ME. I am able to leave the house, ride my motorbike (sometimes) and generally don’t need constant care. I even spend part of my time running a business. Other people that I know are not always so lucky. Even with my relatively minor disabilities, I would have quite a miserable existence if it were not for one thing.

Technology

Technology provides a massive help to me in all aspects of my life. Technology helps me sleep, wake up, eat, communicate and rest. Here are some of the things that help me.

Communications

I often get so tired that I cannot speak. I also find that when I am that tired, my brain trips up even thinking of sentences to say. When I am in this state, I have found that I can still type on a keyboard or on a touch screen phone. Not only that, but I can type coherent sentences, partly because I can edit them before sending them.

Social networks like Twitter and Facebook allow me to talk to people about anything I want, at nearly any time of the day. When I can’t sleep at 4am, I can talk to people with the same problem. When I am stuck in the house for days on end and see no one except my wife, I can talk to people on the internet.

ME includes constant muscle pain which gets worse after any activity. This applies even to the small muscles in my hand. As a result I am unable to hold a pen for very long, and activities such as filling in long forms leave me in agonising pain within minutes. I am able to type where I cannot write with a pen.

Food

In a similar vein, I cannot prepare food or cook without severe pain. Carrying a saucepan is tricky. Carrying a kettle when I don’t have the strength could be highly dangerous. Stirring food hurts. Chopping food can make me cry out in pain. I avoid food preparation wherever possible but there are frequent occasions when I have no choice in the matter. This is where frozen meals and microwave ovens are lifesavers for me. If I didn’t have access to pre-prepared meals, (Often cooked and frozen by my wife) a freezer and a microwave oven, I would need much more care than I do.

Memory

ME can affect my memory quite badly. I also have a general problem of getting so into one task that I forget to take my medicine at the correct time, forget to take one of my regular rests, and even forget to sleep. I rely on Google Calendar and on my phone to help me there. Any event or task that I have to do goes in to my calendar, which will sound an alert on my phone at the right time. I have my all too frequent rests and my multiple times-per-day medicines set as alarms on my phone. The only thing I need to do now is actually pay attention when it beeps!

Bad memory also causes a number of other problems for me. I make extensive use of Springpad to help me out. A Springpad app on my Android phone lets me write quick notes and also take photographs when I am away from my computer. It all gets synchronised with their website, and when I need to remember something I can look up the photo and the note to help me. Sometimes I really can’t remember the words that I need, or what I was about to do. I frequently refer to Google search to look for keywords related to the concept I am after, and it usually provides the word or task that I needed to remember!

Sleeping

I struggle to go to sleep, and I struggle to wake up again. (You can read about the waking up bit in my earlier blog post, A Morning With ME.) One very useful aid to sleeping and waking is my Sunrise/Sunset lamp from Lumie. It has an alarm clock and a lamp in it. At night, I can set the alarm, then press the button to get a simulated sunset which isn’t that effective for me as it doesn’t stop my brain from whirling with thoughts, but it is sometimes helpful. In the morning, it simulates a sunrise over about half an hour and provides a much easier wake up than a straightforward alarm clock.

I also struggle to rest. A big problem with ME is having too many thoughts and being unable to stop thinking about things and relax. I have to spend 20 minutes resting several times a day in order to function well, and staying there to rest is very difficult to me because I tend to think of things like this blog post, then get up to do them! The solution is that I download podcasts of radio shows, put them on my phone, and play them when I am resting.

Computing

With all my use of the computer, being sometimes physically unable to use it can be devastating. I use a few tools to help me keep using it.

f.lux is an excellent bit of software that adjusts the colour temperature of my screen based on the time of day. This isn’t the same as adjusting brightness, it actually changes the mix of colours to suit the lighting that I am using and the level of daylight available. Using a lower colour temperature at night helps reduce eye strain and makes it more comfortable to use the computer, as well as making use of the computer just before sleep less of a factor in insomnia. You can download f.lux for free here.

Web pages often have small text, clashing colours, backgrounds that are too bright and worse. There are two ways that I cope with this problem. The first is Readability. Readability is installed as a bookmark button in the toolbar. When I find a long web page that is difficult to read, I only have to click the bookmark and the page transforms into large, good contrast text with a much darker background. Brilliant! Or, err, less brilliant. Cool. (Install Readability here.)

Sometimes I can’t physically sit at the computer. This is where a Kindle ebook reader is useful. The Kindle has an electronic ink screen which is designed to look like paper. It is not backlit like an LCD computer monitor is. It is equiped with WiFi and documents can be emailed to it. I use a tool called RekindleIT which again, is installed as a bookmark button. When I click the button, the web page that I am reading is emailed to the Kindle ready for me to read in bed or on the sofa. (Install RekindleIT here. I have written more about putting documents and website on the Kindle at my business website.) I should also mention that the Kindle allows me to read large, heavy books that would otherwise hurt me to hold and read for very long.

Working

Having all these things wrong with me makes it hard to work for a living. With incapacity benefit and disability living allowance disappearing, I don’t have much choice. For the last year I have worked as hard as I can (even at the expense of any remaining health) to set up a computer repair and web development business along with my Dad and other family members and friends. I’m rapidly heading in to one of the worse parts of my illness though, and I expect to spend a few weeks, even months, in bed starting any day now.  Mobile technology will allow me to keep working to some extent. I can answer technical support queries and direct my business through email and chat. I can setup websites for my customers using my laptop from my bed. It won’t be pleasant, but unlike the last time I was imprisoned in my own bed, this time I don’t have to go insane, and I might even still do some work.

In summary, then, technology allows me to:

  • Keep communicating when I can’t speak
  • Chat to people when I can’t get out
  • Write long texts and fill in forms when I can’t write with a pen without pain
  • Heat my own food instead of requiring someone to do it for me
  • Remember to take medicine and rest at the correct times
  • Keep notes and photo notes to help me remember information
  • Remember words, concepts and tasks by searching the internet for related things
  • Wake up in the morning
  • Rest without getting too distracted
  • Keep using my computer by adjusting it to prevent eyestrain
  • Keep reading when I can’t physically use my computer
  • Undertake paid work when I can’t even get out of bed

ME has tried its best to rob me of a decent life. Technology has given me a way to fight back. I don’t have to accept my quality of life being taken from me. Technology can help others to say the same.

A morning with ME

I wake, I think. At this point it is hard to tell. I am lying on my front with my head pointed towards my bedside table. I try to lift my head to see the clock but I can’t. I fall back into semi-consciousness and doze for a while. It’s better than facing the pain.

I stir again. I still cannot lift my head, but my arm almost works. I reach for my phone. 9:20. I have had maybe five hours sleep. A good night. I notice the tweetdeck symbol. “5 messages about me.” I click to see them but consciousness deserts me and the phone falls out of my grasp.

10am. I wake with a start. My clock is beeping, its simulated sunrise glaring in my face. It did not wake me slowly, instead the beeping alarm hits my skull like a road drill and the sunrise light burns my eyes like being next to a real sun. My phone alarm joins in. Beep beep beep beep THUMP THUMP THUMP THUMP. I try to reach for the alarm and eventually hit the button. The phone is next, and I manage to swipe the unlock pattern on the fourth try. Then I attempt to turn over. Pain hits every part of me. Crushing weight bears down on me. I shove against the bed as hard as I can and drag myself on to my back, my legs following almost lifelessly. I gasp in pain and fall back on the bed.

Blank. Then wake. The sunrise lamp still burns me. I reach for it, managing eventually to hold the dimmer button until it goes dark.

Pain. I remain awake though, so I reach for my phone and load tweetdeck. I cannot speak, can barely move but the digital world responds to me. I can manage to type messages and feel connected to the world that way at least.

The cat wakes and walks over to me. She purrs loudly. I try to stroke her, my arm falling back to the bed. The cat is not happy. She headbutts my hand several times in an attempt to get more attention. Then, horror, she pushes me with a cold damp nose. I have no energy to wipe my hand. The cat leaves in disgust.

My wife comes in to the room to see if I am awake. She asks if I want coffee. I cannot answer, my words won’t form. I know what I want to say, but have no strength to say it. I answer, but too quietly. I try again. “Yes”, I manage to force out. As she leaves I remember my painkillers. I sit up, with huge effort. My legs still won’t follow. Packet. Pop out pills. They won’t go. I summon more effort. It hurts, but the tablets emerge from the packet. Glass of water. Am I holding it tightly enough? I manage not to drop it, and swallow my pills.

My wife comes back with my coffee but I have fallen back on the bed. A few minutes later I find the strength to pick up my phone and reconnect with the online world. I try to reach for the coffee but I can’t sit up enough to drink it. Eventually I manage to sit up enough, and even to adjust my pillow behind me. I drink the coffee.

I think about how a healthy person must view me, how lazy they would think I am. ME? Load of rubbish. Snap out of it and get a job you lazy bastard! I decide that I must write this narrative. Perhaps I can raise awareness of the reality of this crippling disease, change a few minds.

And so, I type this, my phone propped on my chest, my head barely lifted by my pillow. My legs scream at me in pain. My hands tingle with pins and needles, too much typing, held in one position too long. My wife brings me a coffee refill but I feel too sick to drink it. Time for unconsciousness again, I hope.

Broken

Not enough sleep. Out of bed, showered, dressed, collapsed.

Nothing new here then.

Sitting here at my desk, feeling the weight of crushing fatigue literally forcing me down on to my desk. My brain in a weird state where I can’t think properly, can’t complete half of my thoughts, can’t finish spoken sentences and yet I can type my thoughts here at only a slightly reduced pace. I am not coherent enough for proper work, yet can still sit here fiddling with WordPress. Am I achieving something? Who knows. Perhaps I should be compared to a drunken programmer on a Friday night, typing rubbish yet thinking it perfect.

I should go back to bed but in this state I won’t sleep, merely toss and turn.

So I sit here at my computer, too zoned out to engage with the world. No concentration. Too broken to work, too broken to sleep.

M.E. and CFS

Fucking up my world since 2000.