Carers are left to get on with it themselves
Shona knew something wasn’t right
On her days off she’d be totally knackered, falling asleep at 7pm at night. We noticed that her leg would kick out as she was walking.
The doctors didn’t know what the matter was with her and they kept giving her tablets. But she knew something wasn’t right. So in some ways her diagnosis was a relief for her.
She can’t do the things she used to do
Shona has good days and bad days. She’s taken ill health retirement from her job as a bus driver. We have two dogs, and we used to walk for miles and miles but now Shona can only walk so far. There’s a local shop two minutes up the road and she finds it difficult to carry back a few pints of milk.
She used to do all the cooking and food preparation but as MS affects her left hand it’s hard for her to chop the veg. She gets stressed and annoyed with herself because she can’t do the things she used to do. So I help her, prep the food and make sure everything is OK.
MS puts pressure on us both
Shona will forget things, then she’ll repeat things and I wonder to myself: is this part of MS? That can cause arguments and disagreements. I try not to think it affects us, but I think it does.
My job is quite stressful, I’m in charge of about 50 people. I start work at 6am and finish at 6pm so it’s a long day. On my days off I help Shona and take her here and there. Sometimes I just want to sit down, but then I’m up again. I’m not actually getting a day’s rest.
What help is out there for partners?
I don’t think of myself as a carer, I just get on with everyday life. Sometimes you feel there’s not enough support, just to be able to speak to someone who understands.
No one explains to the partner what MS is, and what help is out there. How do you balance work and the other side of life with your partner? I feel like carers are put back on the burner and left to get on with it themselves.
I don’t know what the future holds for us
I don’t know what will happen in the future. Will the MS get worse or will it stay the same? Will we need to get the car adapted? If she’ll maybe be OK for three, four, five years… I just don’t know what future holds for us.