Me and M.E (CFS)

I was originally going to talk about this in my post about mental and emotional health and well being but I decided it was too much to add in and essentially became a subject of it’s own. I have been sat here thinking about whether or not to write about and post this, I have struggled to come to terms with it over time and I am still scared it will affect my life and roller derby.

But if I write about it, maybe it is easier to understand and nothing is lost in translation?

In 2000-2001 I was hit by a car. odd story but the elderly couple put me in their car and took me to the hospital MamaCidal works at. MamaCidal always chuckles about it as she thought he was coming in to see her for an appointment but was stunned when he stated “I have your daughter in the car, I ran her over.”

Fastforward to 2006, I always kept active with band stuff rather than sport, PE at school was a nightmare anyway but my hip had been hurting and something appeared to be popping into/out of places where it shouldn’t so i saw a doctor. When I was 16 my body had developed enough for doctor to operate on my hip without causing damage to bone/muscle growth. The muscle/tendons around the bone had seemingly expanded and slipped out of place, so to remedy this they needed to shorten the muscle/tendons and put it back in it’s rightful place. I also have a funny knee from this “muscle sculpting” as I like to call it.

I started to feel more lethargic over time and started to lose motivation, I didn’t do so well in my A Levels at 6th form college but still managed to get into university. In 2008 I started a teacher training course for primary education however struggled with my health and wellbeing, I was either always tired or very wide awake regardless of sleep or exercise and I struggled more than usual with stress and depression…. then I got glandular fever on and off. MamaCidal saw warning signs and told me to see a doctor as she had struggled with similar symptoms when she was my age and thought it could be CFS/ME. I went to the university doctor and they disagreed, took bloods which I never got results for and thought I was just tired or acting out. Nice one doctors… Anyway.. I went back to my doctor in my hometown and she said it had been noted on my forms that I most likely had CFS/ME. She confirmed this for me. Knowing this felt so good. I knew something about what was up with me! It does also help explain my butterfly mind a bit, it is known to be hard to focus sometimes with this.

CFS/ME has irritated the hell out of me for the past 5-6 years. And whilst it negatively affected my first year of university I learnt to cope with it and came out with a 2:1 business/marketing degree.

Now it has been haunting me again more recently, not necessarily in a physical way but a mental way. CFS/ME is not a visible thing. Whilst I don’t struggle so much with it, there are odd times when I know I have done far too much and am still pushing myself too hard. That teamed with a rarely painful hip means I have sat out of the odd drill at the odd practice. This upsets me alot. I currently travel 30-40 minutes each way to get to practice (until I move house and am a 2 minute drive away…) so that is the first indication of my dedication to roller derby and my team. I have only ever missed practice due to work commitments or the odd time I have been physically sick sick.

Sitting out on the sidelines watching your teammates run drills is hard. You feel guilty and you get angry at your body for being stupid. Even if you only take a 5 minute breather to compose yourself and then feel happy enough to let yourself go back on track. Then when people ask you what is wrong, what do you say? Especially when you struggle with an invisible illness – it just looks bad. The following goes through my head:

– Stupid body. I know I shouldn’t have been pushing so hard and it is my own fault but stupid body.
– They will all think I can’t be bothered or that I think I’m too good to be doing practice drills and get angry with me but I do need to sit out, it isn’t those things! But what if they think that?
– They will think I’m weak and won’t play me.
– They might look at me differently if I tell them.

Now. Only a few people on my team know about my condition, and I feel this is kind of the best way for me to put it out there. I have been scared to share this as I didn’t want people to think I’m weak or I can’t do this. But I didn’t want these people, my friends and teammates to be so in the dark, I want them to understand what is wrong but also understand that it doesn’t affect me and roller derby. I think I wanted to share this now because everyone has seen me skate and play, I am not weak and I take care of myself to the point of being able to do the things I do. If anything does go wrong? My body gives me atleast a days notice that something is not quite right. So it isn’t as though I would be mid bout and just suddenly go Oh No!

I can play derby. I can play for the full time I am required to. I do need to look after my body and make sure I am eating/drinking/sleeping/exercising right outside of bouts and practice but I am far from unable to play. I want to play and I will tell you if I don’t feel as though I am able to play, but please do not feel that you can make that decision for me, send me on unless myself or the medic say otherwise. Please. I love roller derby and would not risk injuring myself being silly so I can continue to keep playing this sport.

I am comfortable with my CFS/ME right now. I have found a good balance between eating better, healthier foods, drinking more of the right fluids, getting the right amount of sleep and taking naps when needed and exercising/conditioning my body to be able to be strong and play derby.

So I hope my Misfits reading this will know and understand why it has been a struggle to tell them this. I felt this was the easiest way to get this out and not be embarrassed in front of you all. It is in my medical notes and those in med/NSO are aware so it has always been safe don’t worry!The doctor I am with fully endorsed and recommended I return to sport and that continuous sport (such as roller derby) would really help to improve and maintain my body in a positive way. And honestly? Since I started playing with the Misfits I have felt much livelier and happier and physically healthier, my muscles are no longer sore – unless we work really really hard or I do the workout challenges I’m doing which really do work the muscles – but they are no longer sore because my my CFS/ME – they are sore because I worked really hard.

I hope this will explain the condition and I hope also that you will look at me no differently than before and not lose confidence in me. I have also highlighted some bits I feel important as I have improved and now only suffer if I let things get very very bad. Which has not happened in a long time! I have gotten better 🙂

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CFS (Chronic Fatigue Syndrome) / ME (myalgic encephalomyelitis)

Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.

It is estimated that around 250,000 people in the UK have CFS. Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15.

There is no cure for CFS, so treatment aims to reduce the symptoms.

Some of the main treatments include:

  • congnitive behaviour therapy
  • a structured exercise programme
  • medication to control pain, nausea and sleeping problems
  • maintaining and, if possible, extending your emotional and physical abilities
  • managing the physical and emotional effects of your symptoms
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