Hi all, I’m new to this site…in fact I’m new to anything like this…
I got diagnosed with relapsing and remitting MS in Jul06, I thought I had been through the grief cycle yet only today after feeling utterly useless I was in floods of tears about my MS. I feel a bit emotional writing this because up until now I have never joined anything ‘MS’y’ for ‘fear’ of knowing what I’ll become like. I really don’t wish to offend anyone by saying that - more that I have just tried to treat my illness by being an ostrich with its head in the sand.
I’m 31 and three months after my first child was born (I have two aged 6 and 4) I was diagnosed. In my time I’ve been 90% blind (not thinking I’d see my children sent me to a very dark space), deaf in my left ear, talked weird because my tongue muscles wouldn’t work, paralysed in my right leg for 8 weeks, semi-hemispheric sensory loss in the left half of my body and I suffered primary fatigue. Now I suffer fatigue every day and although the above symptoms are now all gone I still find it rears its ugly head and reminds me by making my leg (for eg) weak. I also feel like I need iron rods in my body to keep it upright sometimes and can’t walk more than 50m without stumbling and feeling drunk.
I know I’m stupid; 8 years ago they told me to do core excersises and not wanting to believe I had MS I didn’t do them, and now, when I want to do them I’m in a catch 22 cycle of the more I don’t do them I feel rubbish but when I do them it wears me out so I stop and then I feel more rubbish. (Geddit?)
I sometimes get the impression that people around me don’t think I’m determined enough to fight this disease, but I wake everyday, look into the faces of my children, and hate and wonder what the future holds for them. I’ve been given odds of 1 in 5 of being in a wheelchair at 50 and I DO NOT WANT THIS TO HAPPEN. I hate what I have, I hate my limitations and I hate what I will become through the illness. I NEVER want it to impact my children and husband but it is more and more.
My 60yr old mother is one of my primary carers. What would we all do without our parents? But at the same time do you know how degrading it is for me that she has more energy then me?
I’ve finally joined a site like this to try to get a bit of support from other sufferers. There are no answers and no fixes but maybe, just maybe, this will stop me still feeling like I’m in denial and upset.
Please help me try to learn to live with what I have and try to like myself for having it. I’m not depressed - not even close (although it may sound it!!) - but I just think I’m at a point now where a little support wouldn’t go amiss.
Anyone have any sage words of advice for me?
Sorry for the sob story - and thanks. N