My medicine tray helps me to know whether or not I have taken my medicine, I often can’t remember. This doesn’t include my pain killers that I take when necessary, or nasal sprays.
I was told that I had diabetes on the day before my 30th birthday. I wasn’t obese, and there wasn’t much that I could have done to avoid it. In fact given my family history, I pretty much expected to get Diabetes one day. I just thought it would be at least another ten years further down the line.
The doctor that diagnosed me also reassured me that with modern treatments I could still expect a reasonable life span, and I would not have to go on a diet of pure lettuce in order to survive. The other medical staff that treated me said much the same. Unfortunately no one told the diabetes that. This disease is not sticking to the plan.
My cholesterol was already below average, at 4. (The target for a healthy person is below 5.) The first change I made was to my diet. My new diet did reduce my average blood glucose (HbA1c) down to about 10. The target for this is 7, though, and so I started taking Metformin. Metformin is like the wonder drug of diabetes. Someone taking Metformin can expect to extend their expected lifetime by as much as fifteen years, and as such it is now given to nearly everyone with diabetes.
At first a 500mg dose of Metformin got my blood glucose back in the desired range of 4 – 7 mmol/l and my HbA1c back to 7.1. After a few months it had all crept back up, and my dose was increased to 1g per day. That kept is down for a little while longer, and then my blood glucose went back up again and my dose was increased to the maximum of 2 grams per day. My next checkup found my HbA1c to be around 8 and so I was given Gliclazide in addition to the Metformin. 40mg per day seemed to be very effective – too effective, in fact, and I had several hypos. (Hypoglaecemia, where the blood glucose drops below 4mmol/l and results in shaking, dizziness, even fainting and coma.) Despite the hypos, my HbA1c was STILL not below 8 so I ended up increasing that to 80mg per day.
I have been ill in bed through most of December and all of the time from January onwards with fatigue and pain from what is probably an M.E. relapse. In that time whenever I have checked my blood glucose I have found it to be up near 10 – 15 mmol/l which is very bad. My GP put it down to me being immobile and prescribed an increase in my Gliclazide dose to 120mg per day. In the few weeks that I have been taking that dose, I have rarely measured less than 10 mmol/l.
During that time in bed I have been in intense pain on a whole new level from my previous aching caused by the M.E. The pain seems to be neuropathic in nature, with lots of burning sensations and stabbing pain in addition to the aching that I have had for years. There are several potential causes of this, with one suspect being fybromyalgia, which often accompanies M.E. Another possiblity is diabetic neuropathy which is caused by deterioration of the nerves as a result of high blood sugar but my doctor did not think this likely as I have only had diabetes for 30 months. I am undergoing lots of blood tests to try and get a diagnosis.
Then today I got a letter that I really didn’t want to get. At my recent diabetic retinopathy screening, background retinopathy was found in my right eye. Retinopathy is basically damage to the blood vessels in the back of the eye caused by prolonged high blood sugar levels. It eventually causes blindness. Nobody would expect to get diabetic retinopathy until they have had diabetes – and uncontrolled hyperglycaemia – for many years. It seems that I am already starting to be effected. The level I have at the moment does not receive any extra treatment but it must be monitored closely in case it deteriorates further.
So there we have it. I have had diabetes for a mere two and a half years, at least ten years earlier than anyone expected, and I have already exhausted the possibilities of two medicines used to treat it, am already getting eye problems, and I have a crippling pain that is potentially caused by the diabetes too. This is progressing at a staggeringly fast rate. If it carries on then I will soon be injecting insulin, may well go blind within a few years, and could well have neuropathic pain for the rest of my life.
I am crying as I write this. I’m scared. Very scared. I want to live to see forty.
What would it be like to be well, I wonder?
What would it be like to wake up in the morning
and actually wake up instead of feeling groggy and hungover?
What would it be like to be able to open my eyes when I want to?
To get out of bed without wondering if I will be able to stand up?
What would it be like to not have the crushing weight
of fatigue forcing itself down on my shoulders?
What would it be like?
What would it be like to be free of pain –
for my legs not to ache as though I have just run a marathon
when in fact I have not left my bed in days?
What would it be like for the aching, burning, endless pain to go away?
What would it be like to go without the constant headache,
to skip the frequent migraines,
to get rid of the pain in my sinuses?
What would it be like?
What would it be like for my head to remain clear,
even for just one day?
For my mind to be my own instead of refusing to obey me,
forgetting words, failing to finish sentences,
refusing to pass my ideas from thought to keyboard?
What would it be like to know that I could go to work and do my job
all day without having to give up half way through?
What would it be like to tell people I will do something
and know that I can actually do it,
that I won’t crash out in pain with broken promises?
What would it be like?
What would it be like to be well?
I don’t know what it would be like. I can’t remember any more.
I have too much brain fog to write what I want to at the moment, so I’m just going to put this video up and I will come back and write about it later.
*****Human OS version 1.0*****
Running Power On Self Check
Return to hospital to run setup
Testing memory………..Memory mode not optimal. Brain fog found.
Testing limbs………..Left leg: Failed. Right Leg: Failed. Left Arm: Failed. Right Arm: Slow response.
Warning: limbs not responding. Move any limb to continue.
Testing network connection……… Twitter found. Warning: network too fast.
Please insert tablets………Tablets found.
Fatal Error: Coffee not found. Abort, Retry, Ignore?
Timeout. Returning to sleep mode.
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.
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.
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?
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.
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.