So, long term readers (really long term readers) will know that this used to be a lively, happening blog that updated at least once a week. They’ll also know that all that changed a few years ago. Actually, more than a few years ago. Seven years ago. A depressingly long time ago.
In which I do, in fact, have pretty much all of the symptoms of CFS
And I have been back and forth to the doctors to find out what was wrong. So many doctors. Actually more doctors than I can count. The last doctor I saw both he and I had actually forgotten that I had seen him before until he checked my notes. He was the one who diagnosed me with vertigo.
Which it turns out is one of the symptoms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitus (CFS/ME – which I will be abbreviating to CFS).
As is a sudden onset of crushing tiredness.
As is being ill All The Time. All the time. ALL the time.
As is tender lymph nodes, chiefly in the jaw area. Anyone remember the consistently swollen lymph node I nicknamed Bob the Gland, because it was always swollen? For, like, three years? Bob is exactly where people with CFS most often get tender lymph nodes.
Or there’s the post-activity fatigue that used to DESTROY me as I was trying to do the exercise the first doctor who saw me about this SWORE was the key. Because I was a woman who had put on weight (after she had to stop exercising because she was too tired), so even though I came back negative for diabetes and thyroid issues and all the things he tested me for to try to prove it was my weight, he refused to focus on anything else unless I started to lose weight. Which I could not. Because EXERCISING DESTROYED ME.
Admittedly, I have always had insomnia, but sleep problems are also a symptom. Especially only feeling energetic late at night. Now, originally my bed time moved from 10:30pm to 1am because of my goddamned awful noisy neighbours, but I moved out of the last place where that was an issue about eight years ago, I think? It’s still very hard for me to go to sleep before midnight. I used to be a morning person. I’m not now.
Also, headaches. I never ever used to get headaches. I get them all the time now. Headaches are a symptom.
As is gut pain that can’t be explained for any other reason – like the issues I’ve had for the last five months, and periodically before that, which I thought might be a bladder or appendix issue, but is not.
Also memory problems and clumsiness. I used to have a TERRIFYINGLY good memory. Very exact. Very comprehensive. Not now. My memory is shot.
I also have difficulty reading and concentrating. I can still do that, but it definitely got harder when I was doing my PhD. And everyone kept telling me ‘Oh, it’s just because you’re not smart enough for this. You should give up and try something simpler!’
Well, passing with no corrections kinda makes it clear that, in spite of everything, that was not the case. I could do the work. I. WAS. JUST. SICK. So it took longer and was harder than it otherwise would have been. If people could have just believed that I was sick instead of undermining my confidence further, that surely would have helped, though.
In which I also fit the pattern for what people with CFS were like before they got CFS
And this… this brings me to the real OHHHHHHH moment I had at the introductory session today. They showed us a graph (sadly, it’s not in the booklet they gave me – I was gonna photograph it for you, because it was pretty striking), but what it reflected was this:
People who experience CFS/ME were usually leading busy, active lives and often had no problems with their health before the start of the condition… Commonly the people who suffer with this condition have tried to continue life as normal when they are unwell, so they typically react to the start of this condition in the same way. People often talk about going back to work or college as soon as possible and of pushing through exhaustion to keep going.(emphasis mine) Yorkshire Fatigue Clinic Introduction Booklet
What was really striking about the graph (and what the clinician explained to us) was that while most people have a variety of peaks and troughs in their energy levels, people who go on to develop CFS tend to have consistently high energy levels before onset. Much higher than most people. When they do get sick it doesn’t affect them as much and they tend to bounce back quicker.
That. Was. Me.
I was never sick. Like, at most, once a year I got a stuffy nose or a sore throat. I never felt ‘under the weather’. I knew that people could be brought so low by a cold that they would need time off work, but I didn’t really understand how or why.
I did not know what people meant when they said that they felt ‘run down’. I just didn’t get it. That had never happened to me.
Now it’s my entire life.
And it’s not just that I never got sick. I had always been the type of person who was happiest when doing a lot of things at once. This is something people who develop CFS tend to have in common. Before developing CFS they tend to be ambitious and active and manage to fit more into their days than most people.
They tend to be, for example, the kind of person who would work four part-time jobs while completing a part-time PhD, writing fiction, and updating a successful blog at least once a week.
In fact, when I think about the onset of the Crushing Tiredness and Endless Illness, I often think of a blog post I made a year or so before it set in. It’s titled: One crazy bohemian roller coaster ride. I wrote it at a time when I knew things were about to get bad, and I was determined to find a way to power through it all.
In fact, things had been bad for a long time. I did not have enough money to live on. I’d recently had to take on teaching evening classes as well as my daytime teaching job, my admin job, my proofreading, and my PhD. I knew it was too much, but I didn’t have any choice.
It still wasn’t really enough, so to save money that year I ate off what I grew in my allotment as much as possible. Oh yeah – on top of the four jobs and the PhD, I was doing regular heavy physical exertion down the allotment.
When I was too tired to cook I sometimes just ate chips from the chippy across the road. I knew that wasn’t a proper meal, but they were cheap and warm and I never got sick – I’d be OK, right?
But that wasn’t all. Remember – I never was the kind of person who could be passionate about just one thing. The PhD wasn’t enough. I had to be creative! So I squeezed in fiction writing, and at least once a week I wrote a blog post here.
In which I got sick
About a year and a half after I wrote the post about the Bohemian roller coaster ride, I got sick.
Not the big Glandular Fever sick that most of those doctors I talked to over the years were looking for. That is, apparently, is not directly connected to CFS at all. The association comes from the fact that those most vulnerable to developing CFS are teenagers and women in their 40s. And teenagers are particularly likely to catch glandular fever, which puts stress on the body and hence can trigger CFS.
CFS can be triggered by any virus or even just a stressful period in one’s life.
I had a cold. It wasn’t a particularly bad cold in terms of sore throat or cough or anything. I didn’t have the flu or glandular fever. It was just a cold. But unlike any cold I’d had before, it completely knocked me out in a way I didn’t quite know how to describe.
I thought to myself, ‘This must be what people mean when they say they feel run down.’
But it was more than just feeling run down. I was crushingly tired. I had never been someone who was able to nap in the day before, but suddenly I was napping all the time. I got home from work and I went straight to bed. Every day.
I took five days off work sick that year. I had never had a day off sick in my life. When asked what was wrong, I didn’t know what to say. My boss told me I needed to ‘manage my sickness’.
I, as someone who had no barometer for what was an an appropriate level of sick at which to stay at home, was already inclined to assume I should push through it. Now I had been tacitly advised that I should not take any more time off if I could possibly avoid it.
So I didn’t. Quite often I would show up at work feeling barely conscious, my eyes literally drooping where I sat. But I showed up. And I made mistakes. And I got more stressed, and things got worse.
In which most doctors know bugger all about CFS
I’m not going to relive the last seven years of misdiagnosis and gaslighting for you. The point is: I have absolutely goddamned classic symptoms of CFS. Yet every doctor I have seen has told me that wasn’t very likely. Even the one who referred me to the clinic thought I had some kind of fatigue, but not CFS.
Why? Because I didn’t have any big illness like glandular fever. I had a mild cold. And I suddenly felt crushingly tired. And then I never stopped having colds and feeling tired. For seven years.
The cold may have triggered it, but in terms of big stresses on the body, it’s pretty clear that I had that going on, too. I was doing too much paid work. I was studying for my PhD. I was exercising regularly and working down the allotment. I was eating very poorly. Just because I didn’t have a serious virus doesn’t mean my body wasn’t under stress.
Incidentally, always feeling like you have a cold is one of the symptoms. Not just because a simple cold will take longer to get over if you have CFS, but because your immune system will start acting as though you have a cold even when you don’t. Which is why people with CFS often don’t look particularly ill.
At the moment I have a slight stuffy nose and a mildly sore throat. I have had those mild cold symptoms for three weeks now. And I spent most of those two weeks off work sick and barely able to get out of bed.
In which, there is light
What does this mean, going forward? Well, I have my assessment on 22 March. After today, I feel a lot more confident that I’m finally going to get my diagnosis.
There’s then a programme that will actually help me get better.
THERE IS TREATMENT, PEOPLE.
I’d been led to believe that this is a lifelong illness and that the most I can expect is to learn how to manage it.
ALL OF THAT IS A LIE.
Partly born of the fact that until recently there’s been very little research into CFS/ME. But they do actually know things, now. I’ve been talking in quite general terms, but the talk today was actually very detailed, specific, and not afraid of technical language.
Apparently the big thing is that something has gone wrong in the hypothalamic-pituitary adrenal axis, which alters cortisol regulation. And THAT sends a WHOLE BUNCH of systems haywire, including altered mood, changes in concentration and memory, altered bowel habits and abdominal pain (without cause), lymph node tenderness, immunological changes and immune activation (even when you’re not sick).
In my assessment we’ll identify risk factors, profile my symptoms and triggers, and make a plan for rehabilitation, with the aim of achieving stability, then gradually building tolerance and helping me get back to the activities I want to be able to do. Like going places and doing things.
That will probably mean doing less for a while. I probably won’t be updating this blog much and I suspect I’ll be asked to give up my allotment (although I hope not).
I’ll also probably have to put off the things I was starting to hope I could do soon, like learning to drive or getting a cat or trying to get out and meet new people.
The expectation is not that I will get back to the energy levels I once had. But the point is that most people don’t have that level of energy. They did say that some people do get back to that level, but more likely is that I’ll get back to normal people energy levels. Which would be just fine by me.
So. There’s hope. The clinic seem very well informed. And it seems likely that they won’t dismiss my symptoms in the same way all the doctors have over the past seven years, because the doctors were wrong.
That’s really, really good.