Blog: Living with ME

For anyone who doesn’t know, I have ME – Myalgic Encephalopathy – sometimes called Chronic Fatigue Syndrome. I have blogged about this in the past at various points but it seems all the more poignant now as I’m in a relapse which is, pretty much, ruining my life right now. Yes, I sound melodramatic but how this disability impacts on me, it does ruin things. I don’t often like to be a negative person, I’m a relatively positive person, I have to be. But sometimes, it all gets on top of me and rather than internalise I thought I would try and explain briefly what it is and how it affects me. So, if you want to know carry on reading, if not then you don’t have to!

ME/CFS is a relatively little known about illness. Research has been going on for years trying to pinpoint it and, as of yet, not much is known about it. There is talks that it’s a viral issue, that it’s autoimmune similar to Lupus, there has been great debate over whether it’s a mental illness that presents as a physical illness.

Symptoms vary between people; for me it’s muscular and skeletal pain, in particular my arms and legs, I suffer with what is coined as “brain fog” which makes anything that requires memory recall difficult. The joint/muscular pain can vary, sometimes it presents as cramp and other times it has me entirely bed bound because walking is just too hard, it physically hurts or I physically CANNOT walk. Right now my hips are particularly bad, making anything aside from laying on my back with proper support uncomfortable for me, I can’t even lay on my right side when I sleep any more because I get shooting pains down my leg and up my back which wake me and I’m in so much pain I cry. My lapses in memory are making my degree near enough impossible to complete to a good standard. I suffer with migraines anyway, but they increase in severity in a period of relapse to the point I do have to sit in a blackened room and do nothing but sleep for 3 days. As for the sleep issue, it’s called Chronic Fatigue Syndrome for a reason – I can sleep for 12 hours and I wake up and feel exhausted, I am permanently fatigued to the point of exhaustion; this is muscular, skeletal, brain fatigue. Everything is fatigued. Walking up stairs feels like I’ve just run 5k. It’s horrible. Anyone who says it’s in the patients head hasn’t lived with it, clearly.

On to how it’s affected my life:

  • My results last year were abysmal – I dropped 20% off of my coursework and year 1 average because of this illness.
  • I got pulled up at work because a member of faculty, who granted isn’t aware of my disability, put in a complaint about me not “pulling my weight”. To the point I’ve messaged my supervisor and said I shouldn’t work because I’m fed up of being judged and explaining myself.
  • I’m not allowed in a lab. Do you know how difficult it is to be a scientist who isn’t allowed in a lab because they’re prone to their legs
  • Not being allowed in a lab means I can’t apply for the PhD I wanted to apply for. Or many PhD programmes, to be honest.
  • Being this fatigued makes me even wonder if I could manage Teacher Training

Relapses are not a new thing for me. I do have a tendency to subject myself to them at times of stress (final year = stress) but over the years I’ve learnt to manage it a bit more, or so a thought. One of the key things I’ve learnt is being kind to myself, trusting my judgement, knowing my limits and I forgot all the rules I made to myself and now I’m in the position where everything I’ve worked hard for is disappearing and I’m wondering how I’m going to salvage it now.

I’m lucky, I have great friends. I have a wonderful network of support but I’m tired. I’m tired of explaining myself. I’m tired of having to justify sitting down on a bus. I’m tired of justifying why I need to use a disabled toilet. I’m tired of justifying why my job has had to adapt and why I’m not doing certain things. I’m just tired. I’m so tired.

I’m 22 on Friday and I feel like I’m 88 sometimes.

5 thoughts on “Blog: Living with ME

  1. babycrow says:

    Courage (with a french accent of course!). I too went through uni with ME and hope I understand a bit of what you feel. Hang it, relapses do lift when they’re ready. you know that.

  2. byhazel says:

    Don’t blame yourself for the relapse, sometimes life intervenes despite our best efforts, I’ve raised 3 children and held down a job with CFS, maybe not as well as I would have done without the condition but I’ve done it. Listen to you’re body, you’re doing great……hugs H

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