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.
Take care xx
It’s not easy coming to terms with whatever this disease chooses to throw at us.
Would counselling help? Your GP or MS nurse could refer you.
The MS Society Helpline might also be able to help 0808 800 8000.
the other replies cover the need to talk to someone about the way you are feeling.
seriously consider counselling.
as for being able to take your daughter to school - what about a mobility scooter?
your daughter will be the envy of her classmates riding to school on your scooter.
you might not be at the point of needing a scooter but just knowing you have the option could make a difference to your worries.
try not to dwell on what the future might hold, after all it might not!
have you been told by your neuro or ms nurse that you are now secondary progressive?
are you on a disease modifying drug?
look after yourself
Appreciate the feedback thanks to you all . Xxx
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.