Why does life have to be so blinking awkward? I mean do we need any more added stress than ‘normal’ life throws at us?
I’ve been home now for 7 weeks and its been a trying time. I’ve had to learn to fit in to a very busy family life and try and find my own place in this hectic surrounding.
The constant buzz of Lewis’ equipment and the coming and going of his carers leaves little quiet time for me to recharge myself to an acceptable level. It isn’t anyones fault that its like this, its just life.
My mum has been down since before I came home and over a 3 day period she helps me withe the housework, helps prepare meals and has been the most amazing companion during the day. She has worked hard to make my life as easy as possible (some days I get the feeling that she wishes she hadn’t as I do like to make things difficult for myself!)
I have become a rather good sparring partner for the door frames although they win every meeting quite easily so I really ought to give up that fight! I think the bruises on my knuckles would appreciate a bit of healing time!
When I came home I was fortunate enough to be given access to the Snowdon @ Home team and for 2 1/2 weeks I was given daily physio & OT to get me started on the exercises I needed to help me reach my biggest goal. I really want to be able walk around the ground floor of our house with my frame and no other support. I wasn’t unrealistic in saying that I want to be able to be running about and doing all things I used to as I know that that won’t happen.
I am now under the Neurological Rehab Physio Team and had my assessment on Tuesday.
My physio said that to reach my goal I need to work on the strength in my arms, controlling my legs using sight and hopefully I’ll be able to achieve it.
One thing I have learned since being home is that I am useless at controlling/managing my fatigue. I always seem to over cook myself and end up suffering for days and days after. It really triggers the pain in my pack and my arms feel like they have become disconnected from my body, they are dead weights and have really painful pins and needles & my skin feels like it is on fire.
I am a stubborn person and I don’t always listen to advice I have been given. Its paying me back though now as every time I think I can do something that some one has advised I shouldn’t do, I end up in a pickle, normally dropping things or being left in pain.
I really do need to start to listen to the advice, especially the advice my mum gives me. For years she has suffered with Fibromyalgia and it leaves her in such pain when over doing it.
She rightly tells me off when I over do it and dont listen to her, but I’m so stubborn at times I still keep going.
I know that by doing this I will never manage my fatigue properly. I need to accept that I have changed and I just cant do what i used to!
Acceptance of any change in circumstances, abilities, change is so difficult to grasp at any time but when it is acceptance of a life changing episode it is so difficult to openly grasp and face head on.
I wish I didnt have to accept my life has changed, accept that my husband now has 3 dependants not 2, accept that I need my parents help and help from friends. Without all the peeople in my life I don’t think I’d stand a chance of biting the bullet and grabbing accceptance by the horns and letting it crash into my life.
Acceptance must come at some point – maybe right now I’m just not ready to take that step.
Transverse Myelitis & Me, With A New Addition! 
Trish, I really feel for you & your situation, it’s so hard when you have been such an active person to have it taken away from you.
I can empathise a little with you & understand some of your frustrations.
Last September I had surgery to remove a small tumour from my pituitary gland; the tumour had been releasing excessive amounts of steroids into my body causing my joints & muscles to become weak & painful & causing difficulty in walking; I was fatigued ++. Now nearly 9 months later I still can do very little,I need to use either a wheelchair or mobility scooter if I want to go any distance. Like you I have an amazing husband who looks after me & the house. I think about you often, my situation pales into insignificance against yours but I hope & pray that you do recover your mobility but are given the strength in the meantime to carry on. love Pauline
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Pauline, I’m so sorry to hear just how bad things have been for you this past year. Your posts on Facebook have always appeared to be so positive. I guess like me you try to remain upbeat and happy to hide the pain & frustration that your situation has caused.
My whole family has been so very supportive and without them I don’t know how I would have got through this so far.
The hardest thing is the lack of feeling I have and the fact I have to have a catheter. It’s really affected how I feel about things. All I can do is focus on what I can do and do my best to improve all I can. Xxxc
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