Living with M.E. as a software developer
This is not a sob story. I’m just going to tell you about how I feel.
I wouldn’t normally write an article like this on my professional blog, but I’m fed up and want to reach out to people and share my experience for anyone who is interested.
Many of you have noticed that the posts on my blog are very sparodic. Well, a few years ago, I started to get tired easily and found myself needing 12 hours of sleep per day. I thought that I was just someone who needed more sleep than average, although it was frustrating that the days were so short. In the last 2 years, I’ve been extremely tired, and out of professional work, my sleep level rising to 16-20 hours per day, constant pain in my back, neck and shoulders (which is occasionally excruciating; I pop painkillers like candy), a strong sensitivity to changes in temperature making me feel very hot and cold all the time (thermostatic intolerance), regular headaches that I never used to get, periodic bowel irritation, weakness in the arms and legs to the point that some days I can’t walk and others I am so tired that I can’t even lift my phone to call someone for help. Sleeping does not actually make me feel any more refreshed, I am usually just as tired when I wake up as I was when I fell asleep. Mentally, my brain is full of thoughts and ideas, but physically I am quite destroyed almost all of the time. If I walk the ten minute distance to town and take a coffee, a typical result for me would be 1-2 days of sleep afterwards. Finally, in October last year, I received a diagnosis of M.E.
A lot of people don’t think M.E. is real, and it has earned the name yuppy flu in the past decades. I can tell you from personal experience that M.E. is very real. There is a very distinct difference between not wanting to get out of bed because you’re lazy or not a morning person, and being physically unable to get out of bed when your brain is telling you you want to do a hundred different things today. There was much debate about whether M.E. is somatic or psychological, but now it is commonly agreed that it is somatic in nature – primarily, neurological: an infection of the brain and spinal chord which reduces the ability of the body to extract energy from the blood, forcing it to work much harder to do any simple task. If you’re interested, you can read more in the so-called Canada Criteria, although the causes of M.E. are still not fully understood. Unfortunately, there is no test for M.E., so the standard procedure is to rule out everything else. All tests should come back normal. This also unfortunately leads to the fact that many people including myself spend an awful lot of time getting a diagnosis and hence any kind of palliative help, coupled with the fact that M.E. is still not a universally accepted diagnosis among the medical profession.
There is no cure for M.E. People suffer to different degrees, some are still able to work and function while others are not. Many people just get better by themselves, after a year, 5 years or 20 years. In a small number of cases, the condition is terminal, with eventual loss of ability to walk, speak, eat and so on. So, for those of you who have been conditioned by the media to believe M.E. is just tiredness or laziness, please realize that this is a very serious life-crippling condition. Speaking personally, it has ruined me financially, socially and to a certain degree emotionally as well.
I love to blog. It is one useful thing I can do. Teaching people to become better programmers, or get started, is a passion of mine, and I really like to address complex topics that are not well documented elsewhere on the web. The other thing I like to spend my time on is trying to help the local teenagers, many of whom have histories of family abuse, bullying and subsequent depression, self-harm and anxiety. I went through a lot of that in my past and there is no need for them to go through the same suffering that I did. It is a shame that the attitude of so many parents towards these problems is so astoundingly appalling (if you are a parent whose child tells you they are unhappy, I strongly urge you to listen to them, take them seriously and not judge them based on your own experiences or expectations).
I blog when I can. This usually means spurts of activity then nothing for months. It’s the best I can do, and the messages you guys send me in email and on the comments with your appreciation (and sometimes corrections!) are highly valued and appreciated. There are many outstanding and half-written articles, and I will get to them whenever I can!
So what kind of help do I receive from the health service? Not a jot. I have home nurses who are supposed to be there to talk to and bring medicine. Half of the time they don’t turn up or just toss me a box of pills and leave. Lately they have tried to persuade me that I can walk to their office and pick up the medicine because they “don’t have time”. Which is strange, because it’s what they’re paid to do by the money I pay in taxes. I have a so-called psychiatric nurse who is meant to assist with practical matters such as grocery shopping and making sure I don’t fall over in the shower. She does nothing. Most of the time she is off work. I have a therapist who very occasionally asks how I am but spends most of the appointments scheduling the next appointment. I have a doctor who does usually try to help but is usually roadblocked by the rest of the health service. By way of example, the last time I told my psychiatric nurse I need a wheelchair for part-time use she actually laughed in my face (then later denied it when I angrily raised the matter in front of her colleague). Her response was “I’ve seen you outside”. Am I really the only person in the world who requires part-time use of a wheelchair? I write to you now, having been bed-bound for the last 10 days. When I can’t walk, I crawl around in my apartment. It is really quite pathetic.
But most heinous of all, as you might expect, is the welfare service which here in Norway is called NAV. Once every 3 months, all of the above people and myself are dragged to a meeting where various plans are made but never executed. It is an exercise in everyone shuffling around the minimum amount of paperwork necessary to keep the status quo. Such has it been for the last 3 years, and I can tell you, one can only put an animal in a cage and prod it with sticks for so long before it snaps and I’m about to snap.
But now, there is a new problem. I’ve received unemployment welfare for almost 4 years. That is the legal limit of what you can receive in Norway. After that, you either have to get a state pension, or earn your own income. At 33 years old, in order to receive a state pension I need to prove that I can’t work. This was effected this summer by NAV’s excellent solution: go to work. So I did; I had no choice, I was told that if I worked and showed it was too difficult that I would get a state pension, and if I didn’t do the work my welfare would be revoked. I worked in an office for a few weeks which almost killed me, but then the goalposts were changed. Even though the employer had reported that I was not fit for work, and I had a diagnosis of M.E., this was not enough. The whole story is vastly longer and more complicated than this, but in a nutshell, my back is now against the wall and I have no idea what I will do after February.
I am very lucky: I have some amazing friends. They walk my dog, do my groceries and clean my apartment. They drive me around everywhere. Sometimes they even keep an eye on me while I shower. I find the health service’s attitude of shunning all responsibility to my friends appalling, and I feel guilty for leaning on them all the time. I take pride in being independent, but this is now lost, and it is not my friends’ problem; they should be my friends, not my nurses.
Will I get better? I don’t know. The last 2 years have seen a steady decline in my health. How do I feel? Fed up beyond words. Hopeless. No work, no money, barely able to meet my subsistence needs while debt escalates, no prospects for the future. Being positive is extremely important: I always try to remember that I have a place to live, food, electricity, a phone, the internet and the best friends in the world who care about me deeply. Always try to put a positive spin on your situation no matter how dire it may seem. But really? We are all human, and there are an increasing number of days lately where being positive just doesn’t outweigh the seemingly insurmountable mountain of difficulties that lie ahead.
I use my blog as a vehicle to teach people how to code when I’m well enough to write, so if you enjoy my blog or have found it useful, please make a donation. You can find the link below. Either way, thanks for reading, and if you have a friend with M.E., be patient with them, they are not lazy, they’re probably really struggling.
I’ll be back with the usual game programming articles as soon as I can!