The start of recovery

Unfortunately, I missed a blog post over the weekend as I was busy moving into a new flat and I am yet to get any wifi. However, it does mean that my post today is far more interesting, as I attended my first group session for self management of CFS/ME yesterday. Before I get into this post, I just want to state the obvious that I won’t be speaking about the other people in the group for confidentiality reasons. I just want to share some of the things I learnt and how I hope this group is going to help me.

I have been brave in calling this post ‘the start of recovery’ as although that is an obvious hope for me, it isn’t a realistic goal at this point. To avoid any confusion, people often recover from CFS/ME, but quite often they will have relapses and fall ill again. In an ideal world, I would recover from CFS/ME and never suffer a setback again, but that’s not a realistic approach. It is likely I will get better from this level of fatigue, but the cyclical nature of this illness means I will fall in and out of bad patches. Ultimately I want to be in a position where, if I am relapsing again, I will know exactly how to manage myself and not become bogged down by my illness.

I think the most helpful thing about the group is knowing other people going through the same thing. I’m lucky to have my sister to support me as well, but whilst I’m living down in Brighton it’s nice to build a support network around me. CFS/ME can sometimes feel so isolating, particularly when I’ve had to cancel plans; there’s been times when I’ve convinced myself I’m making it up as there are so many random symptoms. It’s funny how the odd ache or pain or even IBS can all relate back to CFS/ME. It is far more than just tiredness.

I learnt something new about the illness yesterday, it links to the HPA axis hence all the confusing symptoms. The HPA axis is the three main glands: hypothalamus, pituitary and adrenal glands. These regulate a lot of your bodily functions, so when suffering with CFS/ME so much of your body is affected. This little bit of information was like a lightbulb going off in my mind, like all of sudden everything started to make sense and I could understand why it feels like a million different problems.

The session also made me question why I suffered with CFS/ME, often people suffer from a virus or infection then develop CFS/ME, however I can’t pinpoint anything specific that triggered my illness. There are some predisposing factors, if you are a woman you are more likely to get it, and your genetics may play a role (which would make sense as one of my sisters also suffers). Stress and lifestyle could also influence your likeliness to get it, I just wrote a blog post all about my performing past and although it was thoroughly enjoyable, maybe all the stress of exams and studying coupled up with busyness has finally caught up with me and manifested itself as this illness. Maybe my body is just burnt out from those years of not letting myself take a break. I can’t give a reason as to why I suffer from CFS/ME, I don’t want to get caught up thinking about why, however I am grateful to fall ill whilst I have time to take off and just focus on myself.

See you next time pals x

Author: Ells Jayne

A 21 year old suffering from CFS/ME whilst studying at university in Brighton. Follow my story as I write about living with an invisible illness whilst studying and trying to launch a career.

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