Had symptoms since a teen relapsing remitting now I’m 35 . I feel it’s now progessing to secondary . I finding it hard to accept I’m losing parts of myself and I don’t feel as capable as before .
Also I’m pretty much at home 99% of the time with the fatigue pain balance . It also has made me feel quite unsure of myself .
I know I need to accept this but I’m finding very difficult to accept the things I have lost and losing out on things . I worry about the progression .
I have a young daughter age 2 I worry that I won’t be able to take her school etc.
Anyone else been through this pattern of thought and anyways to deal with it ?
I’m 59 Dizzybird, diagnosed nearly 2 years ago. I had already given up my career due to another condition.
If I was your age I would probably be feeling just like you. It must be very frustrating for you? I feel frustrated for you. I dread to think how I would feel if it was my daughter with MS.
I hope someone nearer your age with young children can share their thoughts.
Hi i was very similar to you, i had symptoms from the age of 17 was diagnosed at 32,with rrms but i feel i was secondary progressive by the time i was diagnosed, i had my daughter age 35, shes 22 now with a child of her own,i managed to take her to school pretty much most of the time, i had to have help a few times over the years,but i learnt to drive and that helped me a great deal, i just dropped her off,quite near the school,and then went on with what i could do on that day,if i needed to rest i did,
i never stressed or worried what might be, i always dealt with what happened,when it happened.
I feel the same way too. Given how much has been taken away from me by MS I’m forced to come to the conclusion that everything I was going to accomplish in my life is now behind me, a depressing thought when you’re only 36. I want to do things with my life, but I can’t anymore now that I’m housebound most of the time. I try to help my wife follow her dreams as much as I can so that the disease doesn’t limit her as it has me since shes my primary carer.
This is obviously a very difficult and upsetting time for you.
When our children are very young, we need all the physical and mental energy we can muster.
Sadly, MS doesn’t give a fig about that!
So what can you do to help improve things?
Does your little one have the opportunity to go to a play group or nursery? If getting her there is a problem, what about giving the nearest a ring? Explain your situation a d they may come up with a solution…or perhaps you have a neighbour who would take her for you. And then maybe on days you feel stronger, you could go with them.
I am wondering if Direct Payments could help you. I use these to pay for carers to take me out or do whatever I need.
I feel sad for you. I was ‘lucky’ that my children were adults when I became disabled. But I have missed out on some of the fun with my grandchildren.
Good times are ahead if you get some good support hun.