Wednesday, 22 August 2012

Frustrations: The mother of an M.E. sufferer

When I invited people to share their frustrations about M.E. with me, one of my friends came forward to tell me that her son has M.E.. I hadn't previously known this. This is what she had to say...

ME can be inherited........! that awful realisation that you’ve passed something awful on to your child!

I’ve never actually been diagnosed with ME – I’ve suffered with most of the symptoms though since I was 19. My own doctor doesn’t like labels – and after being diagnosed (by another doctor) with Fibromyalgia ten years ago (at 34), the need to have it confirmed lessened. Friends with ME tell me I have it, and I have to say I think I probably do too, but a lot of the meds they use are the same, and the extreme exhaustion of both is very similar – so it matters less to have the ME label.

I know there’s nothing I could do to stop it, but knowing that my son (then 16 and just finishing his exams) had contracted the horrible illness that blighted my adult life and that he got it because I’d had it was very hard to deal with. Interestingly (!), his father has Fibromyalgia too..... so my poor son had no chance to avoid this pain – a lot of people suffer with both ME and Fibromyalgia.

My son is now 21, he’s been through college, a year of Uni and even parenthood whilst suffering with this horrid illness. College and Uni were hard – but they knew about his illness and gave him extra time to complete things – I had to help a lot too, especially with the written work; so most of his coursework was a joint venture – we joke that I too have a Diploma in Modern Music (or at least, the written part – I can’t play a single musical instrument!). Parenthood – well, that’s exhausting at the best of times – adding ME into the mix just adds a whole new dimension – we all help when we can.

The practical side of the illness (or at least the support of it) is straight forward – you know his energy has its limits and don’t expect too much. You do what you can to help, you make allowances and adjust.

Emotionally though it’s harder – maybe because I can truly empathise – but trying to keep him going when I’m struggling to keep my own ‘emotional’ head above water is so draining. There are certainly days when I will do everything to keep him going at a cost to my own health – not because he asks it, but because I’m his mum and that’s my job (ok, silly maybe, but it’s how I feel).

He doesn’t like people knowing he has ME – in fact it’s only his really close friends that do know. He feels that somehow he’s failed by having the illness – that they will think less of him (they don’t, I can assure you). But as his mum, that’s really hard to deal with – I’m pleased, of course, that he doesn’t use it as an excuse – but sometimes I wish he wouldn’t be so hard on himself – and would allow people to care and make allowances.

He’s my son – and I would do anything to take this terrible illness away – but we have to live with it, him and I – we don’t have a choice, do we?

1 comment:

  1. My daughter has ME, my aunt has fibromyalgia, my brother never got a formal diagnosis of ME but my Mum reckons that's what he suffered with for 7 years, my cousin has ME and now I am in the middle of fibromyalgia tests. I too hate the fact that my child has inherited this awful gene that is so obviously in our family.