Yesterday for the first time since last year I decided to go to watch my home team Hull FC at Wigan Warriors DW Stadium.
As with everything I do nowadays it takes meticulous planning along with all the things I need to take with me.
A call to the DW Stadium during the week ensured we would be able to drop off at the ground, so it would only be a short distance for whoever was the wheelchair pusher of the day.
It started off a good day as I was with friends who I haven’t seen for ages and we chatted and had the usual laughs as before.
Nothing ever changes with my rugby friends we all just get on like a house on fire even if we don’t see each other all the time.
Arriving at DW Stadium
When we arrived at the ground the coach dropped us off nearby and my friends shared pushing duties until we got into the stand.
In hindsight, I knew I was struggling then, but because I am pig-headed about staying in my chair I let the stewards take it, so I could sit in the stand.
Mum decided she wanted to be right at the opposite end of a row and I only just managed to walk with my stick. The game went on and my heart rate was climbing up and up, again in hindsight I should have had my headphones with me as it was incredibly noisy.
At the final hooter
When the final hooter went I wanted to stay sitting while everyone around me got out of the way but they all started to move and I didn’t want to get left there on my own, so tried to get out of the row, as I stood up stick in hand I felt my the internal tremors start in my arms, there was a guy in front of me who was talking to someone on the row below and no matter how many times I asked him he didn’t move, I could feel the tremors start in my legs and knew the only way I was going was down.
Thankfully, I made eye contact with my friend’s husband who was just about to walk past the end of our row and reaching out my arm to him asked him to grab me before I fell over. He literally pulled me past this other guy and out of the row.
A couple of rows down another friend could see I was struggling so he and my friends’ husband lifted me out of the way.
Grabbing onto my friend’s hand he very slowly guided me down the stairs, by this time I was sobbing my heart out and more scared than ever before, my legs had stopped holding me up.
As I got to the bottom of the few steps Mum was waiting with my chair, I have never been so grateful for that chair in my life and neither has my friend who was busting for a pee bless him.People surrounded me then, friends I had known for years who I think just thought I had got a bit upset, people were saying "just breathe," I was breathing but what if the use of my legs didn’t come back I was terrified. Click To Tweet
This has happened to me a few times before, but usually, after I have got so fatigued I have been sick or had the runs and always in my home, never away from it. I always put it down to my blood pressure dropping but now I am not so sure.
Eventually, I got back to the coach got into my seat put my headphones on and shut myself out from everything around me.
By the time I got home 3 hours later my legs had stopped shaking thankfully, so it was makeup off and bed.
When I got into bed I had everything going on restless legs, MS hug, woke up twice with spasticity in both legs. Never have I had it in both, it’s usually my left side which is my weak side.
During all this happening I was thinking about my PIP assessors report which states I can walk between 20 and 50m just nicely stopping me getting high rate.
This is being contested but doesn’t yesterday prove that I can’t do it reliably, safely and repeatedly.
So, yet again, another lesson learned I must really learn pacing and more to the point never go into a game without my headphones, as I am sure all my sensitivities along with fatigue caused the shaking and tremors throughout my body.
My life will not be put on hold for this illness, I just must keep listening to my body and try to protect myself as best I can from what is around me.Another thing my friend who helped me down the stairs said he hadn’t realised how bad I was, and he said others don’t either, they still see me as the happy go lucky singing Rach. Click To Tweet
Not sure what I can do about that as people have their own issues and their own worlds they don’t need reminders of how mine is for me.