Recently me and @#raspberrytalk celebrated our 9th wedding anniversary and #raspberrytalk decided we should go out for a meal. We were staying with Raspberrytalk's dad in Scotland, who had his 70th birthday earlier this year. I will be 40 at the end of this year so #raspberrytalk thought it would be great to do a combined double Birthday and anniversary meal, which I thought was very sweet of him.
But, as always, at the back of my mind I was worried that while we were out he may have a seizure, panic attack or, worse still, Rob might come out to play which would not be a good thing to happen in public!
Actually Rob coming out to play is never good. I never know how to respond to him because no matter what I say he ends up verbally attacking me.
Anyway we found a nice hotel restaurant and, because it was mid-week, I thought it would be not too busy ... which luckily it wasn't.
Raspberrytalk's step mum made the booking for us and when we arrived they showed us the table reserved for us which was, typically, slap bang in the middle of the room.
#raspberrytalk likes to sit with his back against a wall and be able to see the exits. This is not a new thing as he's always been that way since he was young. But recently with his onset of severe anxiety issues and mental health issues, a small matter like this can often set off a serious panic attack or worse!
However, his step mum was already on the ball before I could even say anything and she immediately turned to #raspberrytalk to ask where he'd prefer to sit. This was great because I could see that he'd already started to tense up as soon as he'd spotted the "reserved" sign on the table. He had a quick look around the room and chose a table in the corner and I could feel he had started to relax and calm down.
So we got seated at the more suitable table and it was relatively quiet. All seemed o.k with #raspberrytalk, but it wasn't long until his body decided it was not going to work properly.
It started with his arms. The muscles were already hurting and arms were shaking, when they suddenly decided not work at all (muscle paralysis). They dropped to his sides and he couldn't move or feel them. After a few minutes they suddenly jerked up and started working again, but his right elbow was locked. His shoulder worked, his wrist and hand worked, but try as he might he could not bend his elbow.
While all this was going on I was talking to #raspberrytalk and he was worried that I would have to feed him again as sometimes happens at home, but we were in public in front of his Dad! He was getting very upset, frustrated and embarressed and all I could do was tell him not worry and not to get too upset if that was going to be the case. I got up and just hugged him and he started to feel better.
I can't even begin to know how #raspberrytalk feels when his body does these things, I just know that he looks scared and I'm scared for him. And I'm also very frustrated because there's nothing I can do.
Eventually Raspberrytalk's arms decided to both work properly again, just in time for him to have his starter, which was a relief to me and to #raspberrytalk. I know how embarrassed he gets when I have to feed him.
We were having a very nice evening, chatting and laughing and #raspberrytalk managed to have his starter and main course before his body once again started to not work properly.
This time it was his eyes that decided to play silly buggers. They very suddenly became extremely sensitive to light. I have migraines so I know just what it's like when you become sensitive to light and I was worried that #raspberrytalk was going to have a seizure. Sometimes he becomes extremely sensitive to light and sound just before having a seizure and we've learned to use it as a pre-warning. But luckily on this occasion it wasn't the case and after I gave #raspberrytalk another cuddle and shielded his eyes for a bit, the sensitivity to light went.
I don't want to sound selfish or horrible, but I do sometimes wish these things didn't happen, especially when I'm trying to relax. Unfortunately these things happen randomly, which is one of the hardest things to deal with. At least if there was a pattern I could handle things better and work around them, preplanning what we can and can't do and where we could go.
But this is not the case and we are both slowly learning to deal with things as they come. We're both still trying to come to terms with what's happening to him and #raspberrytalk is still trying to accept that there are somethings which he simply can't do any more. His mind is willing, but his body is just having none of it! lol
I just sometimes wish I could take five minutes to relax and not be on red alert constantly. I know this sounds horrible, but it's how I feel ... and I feel guilty for feeling like this, which just adds to the stress! I'm sure other carers out there must feel the same, especially carer's that look after people with invisible illnesses.
But there are no magic wands to make it all better - hence the blog! My opportunity to vent some of my frustrations ... and hopefully give some peace of mind to anyone else out there feeling some of the same things.
I would like to thank Raspberrytalk's dad and step mum for all their love, support and kind words they've given us over the years ... and for putting up with us both!
Take care of each
Carer's Vent
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