@Twinpenny 

Last reply

Twinpenny

Fatigue

Hi, sorry to be repetitive with my subject but it is a real concern for me and a huge irritation for my wife ( she has MS). Both of our lives have been turned upside down, shook around and then stamped on, my wife has gone from a high level career with the NHS to needing help to eat and general mobility. I have been sacked from my job where I have worked for nearly 30 years and become her full time carer. We have had to sell our house and move into a ground floor apartment so that my wife has a safer environment to live in, no stairs etc.. as she has had many falls and broken numerous bones including her pelvis. If only something could be done to help with her balance, she has nystagmus which confuses her vision and creates the fatigue. If she does what I would see as a simple task, eating, watching TV, her fatigue kicks in and she has to go to bed to try to relieve the issue. She has only been diagnosed for about 6 years but over the last 12 months I have noticed such a difference with her, it is as though I am living with a different woman and definitely not the person I married 40 years ago. I am sure there is different levels of fatigue and different reasons for triggering the fatigue but as a whole MS can be such a devastating illness and even though the powers to be know what is happening they are struggling to beat the problem, my wife and I feel we have been pushed to one side, comments like "its the MS, you have got to manage your journey, oh see you in 6 months". There is no medication that my wife can take, we struggle to lead a normal life, social life, what is that. MS needs to be understood and beaten, I am sure that with all the great support that is out there the impact is lessened with some one to talk too. Good Night
@Stumbler

@twinpenny , I agree with you, MS is an insidious condition and can have far-reaching effects on our ability to lead a normal life. Whilst there is no specific treatment for Secondary Progressive MS (SPMS), we should be able to have access to support services, e.g. physiotherapy, psychological support, etc.. Contact your local MS Nurse and ask them to come round to see you to discuss any services which might help. If you're not aware of who your MS Nurse is, they should be able to be located here :- https://www.mstrust.org.uk/about-ms/ms-services-near-me

@grandma

I agree with Stumbler, I now have spms and the local council (SoT, just down the road from you) have installed a through lift, so I can stay In my 3 bed semi that I have lived in for 42 years, and a ramp so I can bring the electric wheelchair straight into the house, I'm on my own and my saying is "they're carrying me out of here in a box" ( minus my brain and brain stem which are going to the ms society for research) I'm 62 and I'm hoping to make another 20 years "with a little help from my friends this site included.😍