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.



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.

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

What would it be like?

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.

Booting up

*****Human OS version 1.0*****

(c) 1978

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.

All my pain is good

Today I was grossly offended by a hymn that we sang at church. The hymn in question is titled “Happy are they, they that love God” and was written by Charles Coffin in 1736.  The line that offended me was “Then shall they know, they that love him, how all their pain is good.” I was singing this song along with the rest of the congregation, but as we started to sing that line I stopped. I couldn’t sing it. All my pain is good? How could anyone write that?

I should explain at this point, that I suffer from M.E. and from chronic migraines. As such I have near constant pain that takes a great deal of effort to control so that I can live my life. I have no pretensions here; many many people suffer far more pain than I do and may be completely crippled by it. My pain is minor compared to those people, but is still greater than that of normal healthy people.

This bold statement that all my pain is good made me angry. More than that though, it led me to some serious thinking. How is pain good? Can any possible good resulting from pain cancel out the bad, to the point that I can say it was all good?

Continue reading “All my pain is good”