M.E., Myself and My CFS

WTF is CFS?

I'm glad you asked! Read this and/or this, for official medical explanations. For an explanation for someone with no medical qualifications, and tbh very little understanding of how the human body/anything works (it's like that episode of Magic School Bus where they go inside the kid's body and all of the blood cells have his face, right?), do read on:

CFS is a physiological disease (recently re-classified as such - for a long time it was considered a mental illness, which is a whole other kettle of fish I can't even with rn) which we basically know very little about. It can affect anyone of any sex/age, but it seems to most often develop in women in their 20's or 40's - because obviously us ladies don't have enough to deal with.

In a nutshell, CFS does what it says on the tin - it's a syndrome that makes you fatigued, chronically. Note the key word there is fatigued - not tired. 



Having CFS isn't the same as feeling like you've not had a decent night's sleep - it's more like feeling like you've not had a decent night's sleep for a year or so, then decided to run twelve marathons back-to-back, and also drunk an entire bar's worth of tequila (AKA Satan's tipple) the night before and you have a massive hangover. It's an all-over exhaustion that affects not just your body but also your mind, making you feel mentally sludgy as well as telling your body that every action you make is costing you ten times more energy than it usually would, so something as simple as going up a flight of stairs or moving from one room to the other becomes something you have to take an hour-long rest to recover from.

It's also worth noting here that the sort of tired you get from CFS isn't the sort of tired you can sleep off. At my worst, I could sleep for 12 hours and still wake up feeling knackered.





Of course, it's not like that for everyone, and it's not like that every day.

Broadly speaking, there are three 'types' of CFS: mild, moderate, and severe - which again, are all named pretty obviously. If you have severe CFS you're more than likely bed bound and able to do very little for yourself; if it's moderate you're perhaps housebound but you can move about and do some things; and if it's mild you might even be able to do most of your day-to-day activities with some modifications and lots of rest. This page has a more in-depth and very useful 'scale' if you want more information.

Personally, I'm very much in the moderate category at the moment - on the M.E. Support scale, I'm probably at a 60-70% as of January 2018. As I said above, some days can be better or worse than others, which is (for me at least) one of the more frustrating things about it. This can also lead to issues when it comes to recovery - but we'll get to that later!

Right but, what are the symptoms?

• sleep problems, such as insomnia
• muscle or joint pain
• headaches
• a sore throat or sore glands that aren't swollen
• problems thinking, remembering or concentrating (I like to call this brain fog)
• flu-like symptoms
• feeling dizzy or sick
• fast or irregular heartbeats (heart palpitations)

How do you get CFS?

That's a bloody good question and believe me, I wish I knew the answer. Or, like, anyone did.
Doctors, researchers, and people on the internet *think* it can be caused by getting a post-viral infection, or possibly by a specific microbe in our guts, or maybe by high levels of stress and therefore adrenaline, or potentially by an evil fairy getting pissed off that your mum and dad didn't invite her to your naming ceremony and cursing you to one hundred years of foggy-headed, achey and unsatisfying slumber the moment you prick your pretty finger on a spinning wheel.

Yeah but... how did you get CFS?

Oops sorry, I'm with you now. Well, as far as I'm aware none of my godparents had to hide me away in the woods until my wheneverth birthday, so let's go with one of the other options shall we?

Long story short, in February 2017 - literally on like, the first Monday of February 2017 - I came down with what I thought was a bit of a cold. I remember sitting down at my desk in the morning and telling my manager that I was suddenly feeling kind of iffy, making a joke about being allergic to the office. The next morning I woke up and I could not get out of bed.

What followed was about a month of one of the nastiest viral illnesses I have ever had. It was like the flu and glandular fever (which I had when I was about 13/14, and a past history of which is common in CFS sufferers, fun fact!) had a baby and infected me with it. Finally, after almost four weeks of non-stop headaches, earaches, sore throats, sneezing, coughing, barely eating and mainly sleeping - plus a sprinkling of doctor's appointments in which they told me sadly that they couldn't prescribe antibiotics, wrote me sick notes for work, told me to drink lots of fluids and suggested I paint a cross on my front door to let my neighbours know that the plague was upon us - I felt well enough to return to work.

Briefly.

From April to May (maybe? It's all a bit blurry), I could not shake the dregs of my viral-ly symptoms. The sneezing and coughing had gone (good news for the trees of the world, since I must have gone through a forrest's worth of tissues), but the achiness and exhaustion remained. I would go to work for a few days and then have to call in sick, or work from home and finish early. I cancelled any and all extra-curricular activities, and spent my evenings and weekends in bed or on the sofa, trying to snooze away the yuckiness so that I could get on with my life.


Initially, my GP thought I had a post-viral infection, but when I continued to not get better, we started doing blood tests.

Oh, the blood tests.

So. Many. Blood tests.

Here's the thing about CFS: the symptoms overlap with pretty much every other illness imaginable. And since they don't know what causes CFS, and therefore don't know what to look for to prove you have it, in order to make an official diagnosis doctors need to rule out all other possibilities. Which means a lot of blood tests. As a useful guide, the ME association has a list of all the tests that need to be done to get an official diagnosis, which is something I didn't have until very recently and would have actually been super helpful about ten months ago.

Anyway, the blood tests basically kept going until sometime in October. Which meant that for about nine months I was in a weird limbo where I was endlessly waiting to find out what was wrong with me, whilst also being periodically signed off from work every two or three weeks because I couldn't actually function properly.

Such fun!

Around October/November, the doctors shrugged and said that they'd ruled out pretty much everything else, and that they were happy to give me a working diagnosis of CFS. However, that was pretty much all they could do for me, which brings me to...

How do you treat CFS?

What next?