Relapse

Relapse. It’s not a word that I like to use. It’s something that I can never say that I’m doing at the time, but something that I can reflect on having done as a chronic fatigue sufferer multiple times, to differing severities.

I’ve reflected upon the last week, I only left my house once. Excluding the garden where i’d only sit for a coffee or talk on the phone for privacy. Like, wow. I didn’t realise until just now, that’s awful and makes me realise how little I do anything at home. Especially so when I feel awful.

Exhaustion for me leads to being in bed until the late afternoon (It’s linked to lack of motivation and struggling with a lot of things, but everything is impacted), this leads to me never sleeping at regular hours, if at all through the night. In a way it’s a good job I’m not working right now, because I wouldn’t cope at all.

Muscle pain is just constant, ibuprofen is like daily meds for me right now. The odd trip to a shop or taking the dog for a walk just murders me for a few days and I feel awful. I think I’m so distracted with what’s going on in my head that physically I don’t even think about things.

I wouldn’t say that I’ve relapsed, but I know my body well enough to see that I’m struggling right now and I’ve taken a few backwards steps.

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Timing

Timing is the time when something happens or the spacing of events in time.

The definition of timing that I prefer when I looked for one is the way that timing is used in music:

The ability to “keep time” accurately and to synchronise to an ensemble

 

Timing has always been a big fixture in my life, generally bad. In many different contexts: Health, relationships and studies in particular.

When I was 14, I was diagnosed with chronic fatigue syndrome (https://melancholycontemplation.wordpress.com/2013/08/06/living-with-chronic-fatigue-syndrome/). This happened when I was playing football constantly and any other sport that was happening, and loving it. I was in a band, spending every weekend with friends and being a fairly average aspirational teen. I got really ill, my life went to a total stand still. Bad timing.

With the only relationships I’ve had that I’d even value enough to mention, both girls in these two relationships were still invested in their exes and things were messy. Awful timing.

Lets put it this way, patience is a trait that I’ve learned to have buckets of. I’ve had to learn to otherwise I’d be in such a bad place right now, I’d probably still be bed-bound after pushing myself too far and getting exhausted. I’d like to think there’s some reward for patience. I think there is. There’s never perfect timing, for me anyway. Maybe I’ll just get to a point in my life and everything will line up. For now, patience is key, timing is awful. I’m okay with that.

I must be difficult to be friends with

I can have “bad days” with M.E, I can get ill like someone else would and it knocks me on my ass. I can spend a week or two doing nothing, I don’t mean like some people do “nothing” and it turns out to be a lot. I mean nothing, barely leaving bed, becoming a hermit. It totally sucks, but it comes with my illness. I’ve accepted it, it can just be hard for some friends to tolerate or get used to.

Friends that have known me anywhere past six months just know it’s part of who I am, it’s not intentional, and I can’t help it. My biggest problem is that I ignore my phone and social media when I’m not feeling myself, or when I’m feeling depressed. I just shut myself off until I’m feeling better. Which I guess can be difficult.

I have some great friends who it doesn’t bother. At one point in the majority of my friendships it has been a problem at some point, generally when I’ve been in a state of relapsing and taking backwards steps (Happened after a messy breakup). So I guess the friends that haven’t seen me at my worst just think I’m being an arsehole, but it’s actually just my way of dealing with my own problem. Kinda sucks that it becomes a secondary problem that I need to explain it so much and try to give friends more understanding.

I get why it would be annoying though from the other side. Just wish I could swap this illness over to a friend on one of my bad days and give them the perspective they never actually get, even though they try to understand.

Living with Chronic Fatigue Syndrome

So, when I was 14 years old I was ill with glandular fever, I apparently just didn’t recover properly. My mum thought I just didn’t want to go to school, I kept complaining about being tired.

Fast forward 6 months, maybe 15 doctor appointments, 2 hospital checkups: I was diagnosed with Chronic Fatigue Syndrome (CFS), also known as M.E (myalgic encephalomyelitis). If you haven’t heard of it ( I hadn’t), there’s some general information here

I was a fairly average 14 year old kid at the time, I played guitar and sang in an awful punk band that I loved with friends. I played football mainly, but any sport that I could, to be honest. I was told I couldn’t exercise by a doctor because of the effects that this would have on me.

I tried ignoring it and being stubborn. The heartbreaking moment of playing in my local football team’s cup final, I scored a goal, earned our team a penalty and set up another guy for a goal. I took my trophy that I’ve kept to this day, I went home and got into my bed. I didn’t get out of it for almost 3 days. I’ve barely kicked a football since.

Looking back, I kept fighting my illness. It took me maybe as long as 5 years to fully accept that I’m ill, and that I can manage to live and deal with everyday things just fine. Sometimes I just need to listen to what my body is telling me and slow down a little, or take a rest.

My parents didn’t understand, my teachers didn’t understand, later on my University lecturers didn’t understand, my friends definitely didn’t understand. I spent almost 2 years out of school, nearly 95% of that was probably spent in my bed. 5% was trying to drag myself to any sort of social event or just to hang out with friends, a lot of people said they’d visit, very few of them did.

I’d be a totally different person if I didn’t have to deal with this experience. It’s something I could talk about in a lot more depth, but trying to save boring anyone that has even read this far.

You could say I was forced to “grow up”, some people at my age (21) still haven’t gotten around to that.

I was blessed to have a family that understood to the best of their abilities, even if they didn’t really get it. I met someone that helped me so much through this time: Emily. She had CFS too, and helped me so much just by understanding my problems, it was such a relief for me to find someone that got me.

The best advice that I can give for someone that is struggling with CFS or has just been diagnosed: Listen to your body, pace yourself in everything you do and build yourself up slowly. Talk to people, family, friends, doctors, people that blog on the internet. (I wouldn’t mind answering any questions, if somebody was to approach me)

The best advice that I can give to you if you have someone in your life that has CFS. If they tell you they’re tired, you’ve never felt that tired in your life, you asshole. Don’t be patronising, they mean they’re exhausted. That has to be the worst thing! But anyway, just remember that they might not be able to walk the same pace you do, or for as long as you. They might struggle with stairs sometimes, on a bad day even now almost 8 years on: I spend a rare day in bed to rest up.

Anyway, I’m kinda worried I only touched on the negatives here. It’s not all doom and gloom at all, I can’t really fit 7 years of my life into one blog post without skipping quite a few steps! The point is, even with the illness, I made it to University and coped with it reasonably well. You can still do what you want to do, you just have to go at a different pace to the people around you. Hard at first, easy with practice.

I don’t know if I consider myself “better” now, almost 8 years on. I class myself the same as anyone else I’d bump into on the street, but I still occasionally have “bad” days, as my Mum would call them. Where things just catch up with me, that used to be every day at first, now it’s every month, or every two months. It’s so rare that I feel drained or unwell that I can’t even say for sure.

Rather than let an illness define me, like I did for almost 5 years of my late teenage life. I learned that it’s just part of my life and really I’ve just gained empathy for what some people have to go through, or will go through in their lifetime. Which is far worse than a chronic, long term illness.