My mum has been diagnosed with MS for 20 years. In the last 3 years it has got considerably worse, however she does not think her symptims are MS related. She describes this “pulling pain” inside of her and says her bosy feels has though it is on an elastic band. I mentioned spascity to her but she refuses to believe it is her MS. She says that she has this rare condition that the doctors dont know about. She has spent so much money using private doctors because she says nhs doctors are useless. She has been in and out of A&E in the last year 31 times!! Her feet her swollen, this is because she is not mobilising well but she feels it is as a result of something else. Sometines she calls me and just cries on the phone sating how shes in so much pain or may text me with words like “help me, i need you” i have 4 kids and a husband. I am really finding it emotionally draining. I dont have anyone to talk to about it and havent even told my 2 closet friends that my mum has MS. I have a younger sister who is 24 but is busy with her own life despite living in the samr house as my mum. My mum is slowly losing her independence and is depending on me alot. She stopped driving a long time ago. She recently saw a social worker, but bot sure what they can do. She really needs a carer to help her with cleaning the house, food shopping etc. I am worried about her state of mind because she says things like she has given up the fight. I am trying to help the best i can but with 4 children its hard to juggle. She has an incontinent bowel but still doesnt believe its her MS. I’m writing this post while being locked in the bathroom, its the only place where i can let out my emotions. I feel so alone and dont know how i can help her. I want my old mum back. I see my other friends mums who are still working and living their life and wish i also had this for my mum. This is my first post. Even of i do not get any replies, writing it has given some relief. ;(
Hi, you sound in a really bad way. Is there no one you could share your worries with? Somehow you need to find a way to get help so that you can de-stress. Does your mum have an MS nurse? Perhaps you could phone her and share your worries. I really do feel for you with your busy life but I’m sorry, I can’t think of a solution for you.
Thank you for your reply. Everything is getting on top me. I dont know who to turn to. I occasionally talk to my sister about it but she doesnt seem as affected by it because the two of them have had a rocky relationship. My mym has recently changed hospital for her MS, her next appointment is in august. Thank you i will make contact and see whether i can speak to someone over the phone.
Hey Capricorn101, I find this forum full of very kind and supportive people. When it is hard to find solutions, having a platform like here to vent is helpful.
I hear that there are MS nurses, have you tried finding one to help?