A general health and medication update

This is a general update about my health and medication. Hey, it’s my blog so I can do that! Feel free to skip it if you want.

I’m currently suffering from:

  • ME
  • Migraines
  • Diabetes
  • Restless Legs
  • Depression
  • Neuropathic pain of unknown cause
  • Other random stuff

Just after the new year I had a massive relapse. I was overwhelmed by pain and fatigue, and I ended up stuck in bed almost all of the time. My blood sugar spiralled out of control, and my optician found retinopathy in my right eye, which means my diabetes is getting serious.

I have tried all sorts of pain medication in the past, mostly finding it ineffective or getting too many side effects from it. For the last couple of years I had only been taking paracetamol and codeine for the pain. Recently my pain has been on a whole new level and of new types so last month my doctor gave me naproxen to try and stop the burning neuropathic pain, as well as co-dydramol for the muscle aches and cramp-like and stabbing pains. I was actually a bit miffed about the co-dydramol because she gave me 10/500 tablets (10mg dihydrocodeine and 500mg paracetamol) whereas previously I had separate codeine and paracetamol so that I could use only paracetamol if that was all I needed, and then take codeine later in whatever amount I required at the time.

The naproxen took the edge off the pain, but not enough so I recently started taking pregabalin. Despite the horror stories and huge list of side effects it has actually turned out very well so far. In my first few days on it I was drowsy, dizzy, and had no balance, but that has all settled down now. I’m getting a lot of pain relief from it, and I actually seem to have more energy too! I’ve also got seperate codeine tablets again. My current cocktail of naproxen, paracetamol, codeine, and pregabalin takes most of my pain away. I still hurt after waking up until my morning tablets start working, and I still get aching and occasional slight burning but things are much better now.

My pain is now at a low enough level that I can start to function again. That is, the level that I am used to putting up with for the last few years where I have had reasonably good health. (About 80 – 90% of normal functioning.) Today my doctor and I decided against increasing any medicine for fear of bringing on side effects. Having said that, I am about to start duloxetine for my depression, and that can also treat neuropathic pain so things might improve a little bit more.

So now that I am not crying at the pain all the time, and I have also found a little bit of energy, I am able to spend a few hours out of bed on most days. I usually waste this on sitting at my desk to use my computer. (The netbooks that I use in bed are sloooooow!) The problem is that I have forgotten how to pace myself, so every time I feel OK I do too much and stay out of bed too long, so that the next day I suffer the consequences and end up too tired to get out of bed and in more pain. I’ve got a huge pile of notes on pacing from a few years ago and a new book that I need to read, then back to trying to have a routine of eating, resting, and activity at the right times. I find that very difficult.

The other problem that I have to sort out is my diabetes. I have only had it for two and a half years, but in that time I have progressed to the maximum dose of metformin and gliclazide and still don’t have my blood glucose under control. Every time I step up a drug or get stricter on my diet things get a bit better but deteriorate rapidly. Here’s my last month of blood sugar readings.

Glucose line Feb - Mar 2011

The next step from here could be a new medicine in addition to the two that I already take, or insulin injections. My doctor is of the opinion that the rapid progression of my diabetes means that I would be better off going straight to insulin. She explained to me that the earlier the onset of type 2 diabetes, the faster the progression seemed to be. She mentioned people in their 30s and 40s for this example. I had to point out that I was diagnosed the day before my 30th birthday, and so actually I became diabetic in my 20s which probably makes me one of the youngest people to get type 2 diabetes. I have been against the idea of taking insulin because I really want to train up and ride blood bikes and I think taking insulin would be a problem but I think at this point I have to accept that my health problems mean that I will never do that. With that ambition crushed, I might as well start insulin and have an easier time of it. As it stands, my doctor is going to wait until my next diabetes check up in just under three months, and if things aren’t under control then, I will be referred to a specialist to start taking insulin.

So that’s me at the moment. Some improvements, some deterioration. My diabetes is far worse and going downhill fast and taking my ambitions with it. My pain is down, although still probably what most people would rate as high, and my depression will be treated. As consollation prize at least I can get out of bed occasionally now.

 

 

Moving house

I’m living on Employment Support Allowance (ESA) and because of that I receive Housing Benefit to pay the rent. Now my wife and I are being forced to move house to keep costs down. According to the rules, as a couple with no dependant children, my wife and I are only entitled to a single bedroom, and therefore they will only pay a maximum of £103.56 per week. (£448.76 per calendar month) We currently live in a two bedroom flat which costs us £121.15 per week (£525 pcm) so there is something of a shortfall there and we are struggling to pay the rent. Additional problems with our housing benefit are making things even harder. (My wife is registered with seven different employment agencies ranging from teaching to cleaning but still barely gets two days work per week, and the council can’t cope with variable income from multiple sources.) We went to look at a place earlier today. It’s too small, has no storage, smells of damp, and is next to a noisy main road and a noisy pub, but we will probably have to take it.

So why shouldn’t we have to move house? Well to start with, we can’t afford it. I’m sick and claiming benefits and my wife has so little temp work that she is claiming Job Seekers Allowance this week. Where am I going to come up with agency fees of £396? On top of that, we have to cover the costs of a months rent and a deposit in advance, at least until we get our deposit back from our current home, so that’s another £1,000, plus find money to purchase a fridge, a washing machine and a wardrobe, because our current ones came with the flat and the new place doesn’t have them. That’s at least another £200 even if everything is second hand. We’re a month behind with our rent, how the hell are we supposed to find £1,600? We can’t. We’re utterly reliant on other people giving us money to even contemplate moving at all. And if we don’t move then we still have to magically find £75 per month from nowhere, even before we allow for the catastrophe that is our housing benefit calculations.

Then, there is my care and support. On the rare occasions when my wife does have work, I’m on my own. On a bad day, which is a lot of them right now, I can’t even get out of bed. I’m on my own for getting food. Fortunately, I live next door to my sister, and five minutes from my parents. I currently rely on my sister to help me nearly every day. When I had a hypo and ended up in a heap on the floor, minutes away from blacking out if I didn’t get help, I was able to call for my sister to rescue me. Once I have moved house, I will be at least ten minutes, probably fifteen, away from help from my mother or my sister. If I collapse in a heap, and somehow manage to get to a phone, I will be more likely to call an ambulance than family. How much does does it cost to send out an ambulance? Who will bring me food and drink and help me walk to the bathroom in future? If my family can’t easily provide that help, I might be asking the council to provide care in future. How much does that cost?

We already moved from a very large flat into a slightly poky two bedroom flat, and threw out loads of stuff during that move. Now we have to throw out pretty much all of the rest of our possessions to fit in a one bedroom flat. Admittedly we do use the second bedroom largely for storage and drying washing, but it is basically space that we need and use. The new place has no room to set up our computer table either, so if my wife does get a teaching job, she has nowhere to prepare or mark school work. When she gets occasional work marking exams, she will barely have room to do it. If I recover enough to work from home, I won’t have any space to do it in. In all likelihood, this will prevent me from going back to work, and will not allow me to slowly return to activity. I basically have to recover enough to work from my office again before I can go back to work. Without building up slowly, recovery is less likely. Even moving house is going to set my health back weeks.

All this ranting isn’t going to change anything, of course. The bureaucracy says move, and so move we must. Future problems be damned.

The cost of living

I have just started taking pregabalin (Brand name: Lyrica) to treat the neuropathic pain that I have been suffering from. When I was discussing it with some friends I discovered something that seemed quite shocking to me. In the USA there are people that need this drug, have been prescribed it by their doctors, but have been deprived of it because their insurance companies have refused to pay for it. This refusal could be because they do not think it appropriate, or do not accept the reality of an illness that is not necessarily detectable in tests, but the most common reason is expense.

It hadn’t actually crossed my mind that pregabalin might be an expensive medicine. My doctor has a nice flowchart of what drugs to try for my illness and what order to try them in, and this one was next on the list. In my blissful ignorance, I simply take the prescription from the doctor to the pharmacy, and walk away with the drugs. All costs covered by the NHS. Since I have long term chronic illness, I am exempt even from paying the £7.20 prescription charge that most people would pay for their drugs.

All of this got me thinking; what if I had to pay for my medicine? Would it even be possible? I currently have twelve medicines on prescription. If I were to pay even the standard prescription charge, with the NHS covering the rest, my medicine bill would come to £86.40 per month. At the moment we are struggling to even pay for our rent, bills and food, so this cost would be crippling. But without the NHS? My drugs would cost much much more. I did some research, and I present here what I would pay for my most important drugs.

  • Metformin (Glucophage) £12.28
  • Gliclazide £1.86
  • Olmesartan Medoxomil £10.95
  • Bendroflumethiazide £0.91
  • Pramipexole £35.66
  • Sumatriptan nasal spray (Imigran) £35.39
  • Naproxen £4.20
  • Pregabalin capsules (Lyrica) £64.40
  • Codeine £5.39
  • Paracetamol £1.62

Total cost: £172.66 per month.

In the USA it would be even worse. Here are the best prices that I could find. (Via www.pharmacychecker.com)

  • Metformin (Glucophage) $50.40
  • Gliclazide $17.22
  • Olmesartan Medoxomil $18.20
  • Bendroflumethiazide – no price found
  • Pramipexole $29.68
  • Sumatriptan nasal spray (Imigran) $114
  • Naproxen $11.76
  • Pregabalin capsules (Lyrica) $161.28
  • Codeine – no price found
  • Paracetamol (Acetaminphen) – no price found

Total cost: $411.54 (£255.68)

That is an astonishing difference between UK and US price.If I had to pay all of it myself, I would have to go without many of my medicines, which would basically leave me unable to control my diabetes and my migraines. Apart from the Lyrica, my pain medication is actually very cheap and I would still be able to afford that. Without diabetes medication I would be practically unable to eat and would still have hyperglycemia. Without sumatriptan, my painkillers would not help and the other symptoms of migraines would keep me firmly in my bed. Fortunately the NHS covers my costs and I have some chance at recovery and leading a relatively normal life. Some people will no doubt argue that it is unfair for me to drain so much money from the NHS. They have failed to understand how this system works. When Aneurin Bevan launched the NHS in 1948 he gave the NHS three aims:

  • That it meet the needs of everyone
  • That it be free at the point of delivery
  • That it be based on clinical need, not ability to pay

Treatment for any given individual may very well be expensive, but it all works out in the end. I have paid National Insurance whenever I have been well enough to work. I receive my medicines without paying when I need them. With those medicines, I may well improve enough to work again and pay more National Insurance. The NHS provides for both people that will one day repay their healthcare costs, and people that might not. Even those that will never be able to work and contribute financially will still contribute something to their society by their very existence. And regardless of future financial contribution, would you really want to live in a world that simply leaves the sick to die?

I am very glad that we have the NHS and I will fight as hard as I can to keep it.The government must not be allowed to ruin what we have.

Pain Perception

If you have ever been taken to hospital, think back to when you saw the triage nurse. You would have been asked a question, “How much pain are you in, on a scale of 1 to 10?” The first time this happens to someone, they will nearly always aim high. Broken bone? Headache? Burn? They will all be reported as 8,9 or even 10. But then something worse happens. Perhaps that rates at 10. But that means that the previous pain can’t have been 10, so it must be re-evaluated and bumped down to a lower number.

Tolerance of pain varies completely from person to person though. Some people can shrug off pain that has others clutching at the affected area and swearing or shouting about how much pain they are in. I would imagine that they rate the same pain as somewhat lower on the scale than others.

On my own personal pain scale, my neuropathic pain is sitting somewhere around 3 or 4 this morning (With the aid of quite a lot of painkillers) but without painkillers can often by around 8 or 9. I would rate my migraines, which are very debilitating, as about 7, although I once would have said they were 10. The migraines had to be bumped down the list a bit because the perianal abscess that I had last year definitely has to rate at 9 or 10 and was the most pain I have ever endured. I think there must be worse pain than I have experienced, for example the extensive damage inflicted by a road accident must surely be more painful than my abscess was.

This presents a problem for people that experience lots of pain. When going into hospital and being asked to rate the pain, giving 4 as an answer gets you dumped to the back of the queue. A pain level of 4 is not a problem. And yet, that 4 may well equal the pain of the next person to answer the question, who having no further experience of pain, will answer 10.

There’s no solution to this problem that I can see. Pain is entirely subjective and cannot currently be measured, and if it were to be measured, the sensitivity and reaction to pain in the subject would also need to be measured in order to rank the severity of each case.

Still, as a bit of fun to lighten up a horrible subject, go take a look at the pain scale over at Hyperbole and a Half.

What price on being pain free?

The biggest symptom that I have suffered from in the last ten years that I have had ME has been punishing, disproportionate fatigue. Recently, though it has been overtaken by pain. All the old aches, headaches and migraines that I have had for years as part of M.E, but also sharper pain in my muscles especially when touched or pressed, and burning pain through my arms, legs, hands and feet. I’ve already exhausted a few types of medicines over the years, having worked my way through the standard painkillers, (paracetamol, ibuprofen) Tricyclic Antidepressents (Amitriptyline, Dosulepin, etc) which are used for their pain killing properties rather than for depression, SSRIs, (Prozac) and Opiates. (Codeine, Dihidrocodeine) There are a good few that I have tried but can’t remember too.

I never had much success in quelling the headaches and muscle aches before, but this new pain is even more persistant. I have reached a point where I am taking paracetamol, naproxen, and codeine but still at points can be found curled up in my bed shaking with pain.

When I saw my doctor on Monday she took me through the flowchart of drugs for treating neuropathic pain and the next on the list was pregabalin, otherwise known as Lyrica. (Note: Lyrica, not Lycra. My pain treatment is not stretchy obscenely tight clothing.)

When I told other people that I would be starting Lyrica, I got some very strong reactions. Several people told me that they had had a horrible experience taking it and would never advise anyone else to do so. Several others told me that it was alright for them, and some told me that I was very lucky to get it and that they were jealous!

So what could be wrong with Lyrica? Well it certainly isn’t a drug that you turn to first. In fact you have to be quite seriously ill before a doctor will even consider giving it to you. It can be very effective in the treatment of pain but the drawback is that a great many people taking it suffer side effects. Wikipedia lists these as follows:

  • Very common (>10% of patients): dizziness, drowsiness
  • Common (1–10% of patients): visual disturbance (including blurred vision, diplopia), ataxiadysarthria, tremor, lethargy, memory impairment, euphoria, constipation, dry mouth, peripheral edema, loss or decrease of libido, erectile dysfunction, weight gain

Quite a list, that as many as 10% will encounter, with even more becoming dizzy and drowsy. Stopping taking Lyrica can also be quite a problem:

After stopping long and short-term pregabalin treatment, you need to know that you may experience certain side effects. These include, trouble sleeping, headache, nausea, feeling anxious, diarrhoea, flu-like symptoms, convulsions, nervousness, depression, pain, sweating, and dizziness. (Taken from the Patient Information Leaflet)

I already knew this information at the time I had been prescribed the medicine, but after I announced on Facebook that I would be starting to take it, I got a new rather panicked message in reply.

The side effects are horrendous, you wouldnt even be able to do any writing as your brain will not work. sure , it did take away all my pain which was wonderful but i was left as a vegetable, not even able to watch tv! i was put on them by the pain clinic but my gp took me off them and it took months to come off them as they are so potent! and the pain came back with avengance! but on good days i do have a brain ! it still only you that can decide and hey, you may be the fortunate one that gets all the benefits and none of the side effects. i do understand your pain but it was a disaster for me and another friend who was prescribed it for deep seated pain. it was awful! i was a zombie! life was not worth it. i couldnt walk or talk straight so was on the sofa all day every day and i didnt even get to the dosage that they wanted me on….but i did sleep!

Not a hopeful outlook then. However, I considered this carefully. As far as I can tell, less than ten percent of patients get these side effects, which means that 90% don’t. I think, on the whole, the possiblity of escaping the pain is worth the risks of trying it for a while, even if I then have a few more days of problems as I come off of it. If it kills my mind, there is no question, I will stop taking it. I would rather be stuck in my bed crippled by the pain but still be able to think and communicate than to be a mindless zombie but not in pain.

Today I had my first side effects. I was trying to get out of my flat and into a car. I was distinctly wobbly as I left the house, using my walking stick without even complaining (I hate the bloody thing) as I was that unstable. When I got to the car I started to turn to try and sit down and I collapsed. My legs went form under me, my world was spinning round and I was falling, grabbing on to the car and completely failing to stay upright. Having decided that going to the train station to continue with the journey as planned was not the best idea, my dad offered to drive us there instead. (100 miles each way! My dad is awesome.) We stopped at my parents house on the way for a a bit. I tried to take my coat off before sitting on a sofa, and once again collapsed, face forwards into the sofa. Fun.

I’m hoping the wobbliness will cease, but tomorrow is a busy day with a funeral and a family gathering to deal with and I am quite worried that I am going to have to be more or less carried everywhere.

What I need to focus on is that point in a few days time when the Lyrica starts to work, and I might, if I’m lucky, be rid of the endless pain that is burning and tearing at my body. Then it might just be worth it.

Erasing the past

I am currently bedridden, suffering from ME and an as yet unidentified further illness. Twitter is my lifeline and is what has been keeping me sane, and I have managed to produce some ten thousand or more tweets in the last three months. Having finally given up any hope of managing to work, even through my computer from my bed, I have just started the process of applying for ESA and will be judged on whether I am fit to work or not before I can receive it.

I started to worry that my heavy use of twitter could be used against me in this process. I have already explained how and why I can use twitter without that meaning that I am fit to work, but I also worried that my tweets could easily be taken out of context. For example, a tweet about undertaking an activity of some sort could be used as proof that I can do that all the time. What an investigator would not see is how good or bad a day I was having, how much I had to prepare for and work around the activity, or how much pain and exhaustion that activity would cause for days afterwards.

I think the rumours of investigations into ESA claimants usage of social networks are probably not true, but I don’t want to take that chance. I do not have the energy to fight through an appeal should I be declared fit to work.

And so, on Thursday I took the drastic step of deleting all 12,272 of my tweets. I am fully aware that deleted tweets are not really deleted. Although they will no longer appear in my timeline, they are still there to anyone that knows the direct link to the tweet, they will still appear wherever they have been retweeted. (And some have been retweeted more than a hundred times.) They have been indexed by Google and by Topsy, and many others. What I have tweeted can be quite easily found by someone that is really determined, but I simply wanted to put my tweets beyond the reach of fairly incompetent researchers. Someone that I know has done the same thing to prevent trawling by tabloid journalists.

If you are interested in doing the same thing yourself for any reason, I used two tools to do the job. I had to use two because the first one did not work completely. The first was Twitwipe, found at http://twitwipe.com/ and the second was Tweet Eraser, found at http://www.tweeteraser.com/

—Addendum—

This post was intended as a quick explanation for friends that were asking my reasons, but has suddenly become rather popular and has had 500 views in a few minutes. The irony of this has been pointed out to me. If you are here investigating me, please make sure you read all my reasoning, and don’t misquote me.

Relevant earlier posts

If you can tweet you can work, and other such lies

Nothing to hide? I pity you

If you can tweet you can work, and other such lies

Picture the scene: I am lying in bed on my front, with my head turned to the side. My right arm is flat on the bed, a phone propped up by my hand. The only part of me moving is my thumb, pressing the on screen keyboard. Pain is tearing through my body, what I feel in my arms, my legs and my hands is agonising. I don’t have the strength to lift any part of my body from the bed. And yet, I have one, tiny connection to the world  – I can send messages out through twitter, and I can receive replies, 140 characters at a time. This is my often my only interaction with anyone else at this point. Through twitter, I can talk to friends, take my mind off my pain and discuss something – anything else. When the pain is too much, I’ve got a support group of fellow sick people and we can commiserate about the pain.

Fortunately, I am not this incapacitated all of the time. No, much of the last few weeks I have been so energetic that I have been able lie back on a pile of pillows and type on a full keyboard for as much as a few minutes before the searing pain in my hands sets in. Sometimes, gasp, I can even make it to a different room in the house for a while.

And yet, according to Nadine Dorries MP, my usage of twitter means that I can work. I can’t get out of bed most of the time, but apparently I am a scrounger who is defrauding the benefit system.

Last September Dorries made a request on her blog for people to look out for people tweeting too much and report them to her. She also asked people to report anyone who tweeted a lot while on benefits to the Department of Work and Pensions. She went on to pick on someone who was waiting for surgery for arthritis on both feet for their prolific use of twitter.

It gets worse. There are now rumours that ATOS (The company paid to assess people, who have been known to declare people fit for work just before they die from their illness) will be checking twitter and other social networks for activity that indicates ability to use a computer for any length of time. Because, you know, that makes you fit for work. Now this may just be rumours, but it shows a huge problem with public and government attitude to the sick and disabled.

I want to work, I really do. I own a business that my father and I have built up over the last 17 months into something that has the potential to go somewhere. I started my business as a last resort, since both of us are disabled, to try and provide part time work for myself that could be done when I have the strength to do it, not strictly between 9am and 5pm. I have been trying to build up more web hosting and design work, and I even tried to carry on working from my bed when this relapse started nearly three months ago. Unfortunately I have reached the point where brain fog has killed my concentration, and pain and fatigue won’t let me keep going to long enough to finish any work related tasks.

I can write, but I couldn’t tell you when or how much I could write. I can tweet, but that’s because tweets are short, and (mostly) fit in between bouts of brain fog which stops me completing my thoughts. I can set up a website without leaving my bed, but who is going to hire me to do that when it might happen now or it might take me weeks because of my health? I could be brought a customers computer to remove viruses from, but then not have the strength or concentration to do it for days.

The fact is, I can’t work. I am not employable. If I had ANY chance at all of working, I would be desperately trying to save my business into which we have sunk time and money and worked so hard for the last year and a half. I have hurt myself trying to run my business and have had to give up and apply for ESA because I have no other choice. And yet, because I have a variable, invisible disease, I am highly likely to be deemed “Fit for work” by the Work Capability Assessment. I won’t have the strength to appeal against that and I won’t have a Citizens Advice Bureau to help me because they are all being shut down.

So I am going to carry on tweeting and blogging. I have precious little other contact with the world and I will lose my friends and my support group if I don’t. Someone looking at my online activity and judging me on it cannot see how long each blog post took me, or the pain that I have to endure to even communicate with others online. The portrayal by government and by media of all sick and disabled people as scroungers and cheats is disgusting and yet good people that should know better are taken in by it. If you think I should just lie here and be miserable while I wait to be denied my ESA, then screw you. You are the problem.

More on the despicable behaviour of Nadine Dorries

BMJ: Well enough to work? A report on ATOS by a GP.

Guardian: Frequent tweeting doesn’t make one a benefit cheat, Nadine Dorries

Diabetes

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.