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.

Alternative medicine: a dangerous game

In this article I discuss why alternative medicines are bad, how the placebo effect works, and how such remedies are dangerous to the user and to others.

I am keenly aware that I need to tread carefully with this post. I know a number of people that will disagree with me, and even a chance that some other people will attempt to sue me.

It is my firm belief that alternative medicines are a danger to health and life for everyone, and not just those that choose to use it. I am talking about treatments such as Homeopathy, Crystal Therapy, Accupuncture, Chiropracty, and many others.

Why they don’t work

I believe many of these methods mentioned here to be a fraud or at most a misplaced faith in something which doesn’t actually have any scientific reason behind it. Homeopathy, for example, is not just without reason for working, it’s actually counter to reason.

I’m picking on homeopathy here mainly because I can’t address all alternative medicines in this article. Homeopathy relies on choosing a substance that is believed to be linked to the health problem in question. That substance is then diluted in water many times over, and the water shaken to imprint “memory” of the substance. Given that most illnesses are caused by viruses, bacteria and genetics, the choice of material for the homeopathic remedy is largely arbitrary.

Leaving aside for a moment the choice of substance that is supposed to help with treatment, I’m afraid that the notion of diluting something to make it stronger just doesn’t wash. True, vaccines rely on a small amount of dead virus to trigger an immune response and train the immune system, but homeopathic medicine is not like that. No, in homeopathy, the substance is diluted so much that there is nothing left at all. Commonly a substance is diluted 100:1, and that is sometimes repeated up to 30 times. After 12 times, though, the likelihood is that not a single molecule of the original substance remains behind. Scientists call this the Avogadro Limit.

Homeopaths counter this by arguing that water “remembers” the substance. This is of course nonsense. The atoms and molecules cannot remember anything. If they did, the atomic or molecular structure would not be that of hydrogen, oxygen or water. Apparently shaking the water in a certain way helps the memory here. I’m not even going to write about what’s wrong with that.

For more information about homeopathy have a look at the excellent resource that is www.1023.org.uk

The placebo effect

Alternative medicines are, dare I say it, actually not without some beneficial effect. Although most do nothing to heal the body or fight infection through any physical changes, they often do help through the Placebo effect. The placebo effect is “measurable, observable, or felt improvement in health not attributable to treatment” and is the subject of much ongoing scientific research. The placebo effect is know to help with pain relief in particular, but also even to improve physical health. It has been observed on conventional and alternative medicine alike, and some scientists even believe that some conventional medicine works more as a placebo than a physical change. The placebo effect is beneficial enough that it is actually worth using as a medical treatment. Recent research found that a placebo can work even if the recipient knows that it is a placebo!

There is also some placebo effect because practitioners of alternative medicine are likely to show more interest in and spend more time with their patients. When NHS doctors are under so much pressure, spending a few hours with them is unlikely, whereas that can easily happen with an alternative medicine practitioner.

Why it harms people

You may think that if an alternative medicine is unlikely to poison someone, and may well even give them a benefit from the placebo effect, that there is no harm in allowing them to use it. Unfortunately, you would be wrong.

Alternative medicines can cause people to avoid conventional medical treatment that works, in a situation where a placebo does not work and leaving a condition untreated could be fatal. Diseases such as diabetes, where the patient needs medicine or insulin, could be left untreated and lead to stroke and blindness. A flu virus could run it’s course unchecked in an elderly person and cause death. I am sure there are many more examples that I could list here.

People that use alternative medicines are also likely to avoid vaccinations out of mistrust of conventional medicine or of fear of side effects. This is the part that could harm us all. In order to eradicate diseases such as smallpox, measles and polio, a critical percentage of the population must be vaccinated. This is called herd immunity. When enough people are vaccinated, the remainder of vulnerable people are unlikely to be infected through other people carrying the virus. There are places where measles and mumps have returned with a vengeance because herd immunity has broken down after many people chose not to be vaccinated.

Opting out of vaccination is as likely to be caused by a failure to understand the scientific method as by the use of homeopathic remedies, but then using homeopathic remedies is also likely to be caused by a failure to understand the scientific method.

Another way that homeopathy harms people is that it receives NHS funding. That’s right, the NHS spends £4 million per year on paying for something that doesn’t work when it could spend that money on a myriad of more sensible things. Homeopathy is stealing from us all.

Conclusion

It is not possible to dismiss all alternative therapies out of hand. Unfortunately, to the average person, medicine is divided into conventional, and alternative. I am guilty taking this line from the science side, but many people view it from the alternative side. Because of this, many people will take the view that because something did work for them, be it through a measurable effect of an active ingredient, or through the placebo effect, that therefore all alternative medicines must work. In practice some work, some don’t. Some are outright harmful, others can be based on sound logic that simply hasn’t been through clinical trials and adopted by the scientific and medical communities.

Those “alternative” medicines that actually use active ingredients such as plant extracts should be tested in full double-blind clinical trials and if they work, adopted in  conventional medicine where useful. The ones that fail should be dismissed and abandoned.

While there may be some benefit from the placebo effect when using alternative medicine, I believe people are much better off in using conventional, tested and scientifically proven medicine. After all, that has a placebo effect too. And as a person with a fairly broken immune system, I beg you, don’t skip your vaccinations. You could kill me.

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.

There’s a hole in my ****

Readers of a sensitive disposition should not read this!

A friend of mine had a hernia recently. In the spirit of having holes in things, and so as not to be left out, an old anal fissure of mine decided to reopen. (An anal fissure is a hole in the side of the anus.) One fissure wasn’t good enough though. No, this time I had to have two, one front and one back. That wasn’t good enough either, so one of the fissures got infected and formed a perianal abscess. The abscess formed a large swelling which made it painful to sit or walk. It was under control using antibiotics at first, and in fact went down so much that I felt ok to go to Greenbelt festival.

Greenbelt was lots of fun but while I was there I started to feel more and more pain, until Sunday night where I had an immensely painful time walking back to my tent. The abscess had returned with a vengeance and was twice the size that it had been. By early Monday morning I was in so much pain that I was screaming out loud and scaring the rest of the campers.

Continue reading “There’s a hole in my ****”