Hi there, my name is Caroline. With secondary progressive MS and a wheelchair user, I’m battling with extreme fatigue attacks that take forever to improve and are triggered again by the slightest exertion - having someone over for a cup of tea and a chat runs my batteries down to near zero.
I’m feeling useless, have pulled out of MS Society research volunteering and at 59 wonder what lies ahead.
Divorced but with a (much older) partner who lives nearby, no kids but a difficult rescue cat. Friends locally and at a distance. A brother who does not live nearby.
Finding it hard to dispel the thought ‘what’s the point?’ at the moment.
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Hi Caroline, My sympathies to you. I sometimes think that feeling sad about having MS and its symptoms is a totally reasonable and normal - who wouldn’t feel sad! I’m sure we all recognise those feelings and sympathise with you., Weirdly i often set aside time for feeling sad and coming to terms with it, even writing down my feelings . Somehow or another a period of feeling and reflecting on my sorrow helps me .
Also weirdly gentle exercise helps reduce fatigue but yes, dealing with conversation, noise and having to think can be a real drain.
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Hi Caroline, so sorry you are feeling so down. I have relapsing MS and i struggle with extreme fatigue and have been learning the hard way that my anxiety makes all my symptoms worse. You are in the right place on this forum to chat to people who are going through the same journey, understand what you are going through and can give you all sorts of little help … i have personally found it really helpful and comforting especially at times when I am struggling even more than usual. I am not sure i have any great advice beyond suggesting to keep on speaking and reaching out to people even to chat about how you feel, it surely helps especially when speaking to other folks who do understand what you may be going through. Take care and stay positive as much as you can x
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Hi Caroline. Just wanted to reach out and offer an ear if you wanna chat your thoughts. You are not alone. Ok? I have sad feelings quite frequently but then I find a distraction- a book, some comedy onYouTube, make a cup of tea and sit in y garden and listen to the soundtrack of nature. Whatever might help. But take time to collect yourself, breathe and know you are amongst friends even though we have never met. Go well. PJ
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Hi Caroline,
I don’t have secondary progressive MS so I can’t comment from personal experience. But I can imagine you will have had to give up on a lot of what made life worthwhile for you.
Are there things you can still do, which matter to you?
And my other thought was, have you spoken to your MS team (nurses/neurologist) about the fatigue? I know it’s a common symptom and maybe they can’t help. But sometimes there are symptomatic treatments, so I just wonder if it’s worth flagging up. Some MS centres also have an occupational therapist. Their job is not just to do with “work” - they’re supposed to help people, on a one to one basis, to get something out of life with MS. Perhaps if you asked they could put you in touch with someone who could help.
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Thanks for your kind words Leonora. There are a few things that I can still do that don’t wipe me out & bring me solace & joy. It’s accommodating this dimunation of my self that’s difficult. I know all the Mindfulness methods etc, but admit to not practicing them. There is no MS centre near me in the Suffolk countryside unfortunately. My main aid has been a fabulous MS nurse - who retired last autumn. The replacement process has been rocky to say the least & I await my first contact with her. It’s the changing goalposts of what I can/can’t do that’s so frustrating. Lying in bed watching clouds scud by along with little flocks of frantic goldfinches & a rook cawing from the phone wires - one of my joys 
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Thank you for your kind words. Good to speak with people who ‘know’. 
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Hi Paul. Thank you for your kind words. Speaking to people who ‘know’ helps. Nature is such a great salve isn’t it? Just opening the door and hearing birdsong lifts the soul. I’m lucky to have nature around me & visible from my bungalow windows. I’m currently keeping an eye on a magpies’ nest in a neighbour’s garden, hoping that won’t go for any chicks that hatch in my nest box later on this spring 
Best wishes, Cx
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Your uplifting words reminded me instantly of a favourite poem that you might know by Derek Mahon. It is a poem that has often lifted my spirits when things look dark and reminded me that despite it all, in some important sense, everything is (as the poet says) going to be all right.
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