LilSquiggle

There is

No test for cfs

CFS is a real bugger to diagnose as there is no test to confirm you have it. The only way to get a diagnosis is to quite literally rule out every other problem that could be causing any and all of your symptoms. Many of the more common issues that have similar symptoms tend to improve in their own time. Therefore, when your symptoms continue longer term and no other diagnosis can be found you can usually be referred to a specialist and they review your case, the tests and finally say “yeah, guess you qualify as having CFS then.”

We dont currently know

What causes CFS

Currently CFS isn’t understood enough to know what actually causes it. However there are a variety of theories on triggers and factors that make you more likely to develop it:

• Viral infections, such as glandular fever.
• Bacterial infections, such as pneumonia.
• Problems with the immune system.
• A hormone imbalance.
• Mental health problems, such as stress and emotional trauma.
• Your genes – CFS/ME seems to be more common in some families.

My specialist advised me that his department and colleagues currently think that CFS occurs when the body believes it has a virus or illness to fight but there is nothing there. The flags that the body sends to tell itself you are no longer ill don’t get flown and so the body remains in “fight an illness” mode. This makes a lot of sense to me personally as the large majority of symptoms people experience with CFS are symptoms your body creates to more effectively kill infections.

For example, when we get ill with the flu, we often end up with a fever, headaches, muscle/joint pains etc. None of these symptoms are really caused by the virus, they are the body’s defense mechanism to make your body a hostile place for the virus so that you can kill it and get better.

My own CFS was triggered when I was 17 by glandular fever and has been with me ever since. For many years it was very manageable and something I never bothered to get diagnosed. Unfortunately a variety of stresses in a short space of time at the start of 2018 caused it to get much worse and I have been learning to adjust my behaviour to its limitations ever since.

brain fog just makes you feel

so damn stupid

The brain fog is very hard to describe but I’ll do my best. I know I’m an intelligent individual but when the brain fog hits it’s like watching my brain process information through a clouded window. I know I should be able to put two and two together but the easy path I always used before is gone and I’m stumbling in the dark. I struggle to hold a conversation because I cant process the information I’m being told as fast as its being spoken and concentrating on the current words means I cant also concentrate on remembering what they said before those words. I’ll then try to reply and get half way through a sentence and realise not only can I not properly recall what they said but in pausing to find the word I wanted I’ve forgotten what I was saying too. My friends are very good about prompting me to continue talking. They’ll repeat the last few words I said and give a quick summary of what we were saying. Sometimes I dont even realise I’ve stopped talking. I just stop mid sentence and I’m like a computer that’s blue screened or run out of RAM. I’m not even aware that I’m stuck in a frozen loop because I cant process any of the information to work it out.

When the brain fog is bad I’ve had quick ten minute supermarket trips take me an hour or two because I have to very slowly potter through my thoughts to work out what is in the trolley, what I needed, what I therefore still need to get and then work out where in the supermarket it lives. I’ve been playing board games with friends and had brain fog creep up part way through and just sat there trying to remember how to do some simple maths to work out what move to make but I cant retain enough numbers from my cards to add them together. The only metaphor I can think of right now is it’s the difference between an adult just picking up a knife and fork and eating their food is how my brain does thoughts normally and a toddler just learning to use a knife and fork and frankly they forget they were even eating because that crayon is a much nicer colour and maybe it would fit up my nostril and can someone else please cut this chicken up because I’m holding the knife upside down and I just flicked an entire forkful of peas at the wall.

Its just a headache but

it never goes away

The headaches arent complicated. It’s a headache. But, mine at least, is a bloody bad headache. The headaches (up until everything got worse and I got signed off work two years ago) are the only reason I ever used to call in sick. I’m pretty good at ignoring it most of the time now because I’m used to it. Even at it’s best its probably a 5/10 constant pain. Never goes. Average day it’s closer to 6.5. On a really bad day it’s an 8 and that’s the point at which I stop trying to function and take pain killers and wait it out. The only things more painful than my headaches when bad is the time I dislocated my elbow and the lumbar puncture I had when they were trying to diagnose the headaches. On top of the chronic tension headache I also get migraines which are super duper fun. No idea if they are caused by CFS or a seperate “fun” adventure and I’ll likely never know.

You have to learn how to

pace yourself

The most frustrating part about CFS is the symptoms can be triggered or made worse for a few days by overdoing it, but your body often takes 24 hours to realise you did so. Therefore, even on a good day you have to be careful to behave like it’s an average day so that you don’t then give yourself a week of bad days. This is known as pacing, ensuring that you learn your average limits and stick to them to not exacerbate your symptoms.

This makes exercise particularly difficult. When I was diagnosed the clinic specialists ran a two session course for people newly diagnosed to explain the condition and its symptoms, but also to help us with coping mechanisms and how to best self manage. One of the key things that caught my attention was doctors talking about going on walks and they are describing people gradually building up from managing a 5 minute walk to maybe, 6 months down the line, getting their body to the point of being able to do 10 minutes walk a day without negative consequences. Exercise is indescribably draining compared to how it used to be.

Everything I do I have to plan in advance; things like:

• What will I do if a fatigue wall hits when I’m out? How will I get home?
• What chore do I prioritise?
• Do I want clean clothes or clean me?
• Do I want nice food but a dirty kitchen?

I have to consider my temperature issues before leaving the house and make sure I’ve got the layers to stay warm… which means carrying more stuff which means the trip out is then more tiring, so do I instead risk getting cold and making myself feel more ill that way?

Since everyone who has CFS has different symptoms no two individuals are likely to have the same experience, the same exact issues or identical coping mechanisms. We all find our own little quirks and best ways to deal with the symptoms so while the broader picture may be similar, others would not describe their experience of CFS in the same way as me.