Last reply 1 month ago
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

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stumbler
1 month ago

@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
1 month ago

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.😍


rotherhamdave
1 month ago

I av spms n live on mi tod. Doing easy tasks is hard n tiring. I av just had a walk in shower installed. The relief of showering is so less hard work than before.
But I’m always feeling sleepy especially meal times. Sometimes it’s a takeaway job cos i just CBA


grandma
1 month ago

By the way twinpenny, there is something that can be done about balance but I don’t know how your wife’s nystagmus will effect the balance work they do. Try asking your ms nurse.😍


edmontonalberta
1 month ago

@twinpenny

Congratulations on 40 years of marriage – seriously. Few kids nowadays will reach that milestone. From what you posted, you married a great one.

Life has detours & speed bumps; you are at the age where the speed bumps get higher & more dangerous. As I asked my Mom when she was in the hospital dying – if someone promised her at the age of 18 that she would be married for 50 years with 6 healthy & happy children who loved her – would she have signed that contract?

My first wife died 24 years ago from Scleroderma; she was a great woman & I still adore her. My present wife is an absolute Sweetheart; she gets whatever she wants so long as we can afford it.

Life isn’t always fair – M.S. & spine surgery have shown me my speed bumps are getting more dangerous & restrictive. But I sleep well at night knowing I am not alone. We will face whatever life throws at us “as a couple – together.

I truly wish you the best.


vixen
1 month ago

Hello @twinpenny, first off I want to say how lovely that you have one another. 40 years, for good or bad, is a huge deal. Did you have to leave the area when you downsized? The trouble with this MS business is that we have to become our own advocates and fight for ourselves. That’s the same for careers too, unfortunately. Do you have children, or family nearby? Try the link that @stumbler gave above to see what might be available to you both. It’s clear that to be able to communicate is important to you. Have you considered a therapy such as counselling? Not so much to problem-solve, more to be able to vent and listen to your own thoughts. The worst thing about MS I feel is that the toughest things we cope with are the things that can’t be necessarily seen, whether we are an MSer or partner, and that’s really frustrating. Keep doing the great job you’re doing, and post freely on Shift whenever you feel the urge x


noelie
1 month ago

I’m sorry to hear about your situation, and thank you for being there for your wife. It’s a trial and error to understand where fatigue comes from, often a combination of physical fatigue and mental fatigue, and the 2 are connected, they tend to go in the same direction, and spiral, usually down, the trick is to break the loop, reverse the direction, find the triggers and work on avoiding them or changing their impact. I believe in diet and movement as medicine. It’s working for me, yes it takes time and effort. A gluten free, dairy free and low refined sugar, low saturated fat diet can seem daunting but it’s a gradual process to change a diet and the benefits are so worth it. Then on the movement front, the best thing to do is to check the MS Gym, designed for people with MS to work on the nervous system, the guy is amazing, his understanding of the condition is phenomenal, both on the physical and psychological level, he is generously sharing his expertise on neuroplasticity and have programs available for little fee ($30/month) considering their positive impact. Fatigue for me was also a lot of tension in the body. Happy to share info if you have any question. Look after both of you.


twinpenny
1 month ago

Hi, thank you for all of your responses. I am already trying to give my wife a gluten free diet it is not the easiest of things to do especially in my case. I have had to learn all about cooking, shopping and all the other general choirs due to my wife usually undertaking the tasks. She is not able enough to prepare food or go shopping for the weekly groceries. You live and learn no matter how old you are. As for the movement issue, she has nystagmus which means the MS has attacked her optic nerves, in doing this her vision is drastically effected. If she looks left her right eye flickers and the left does not move, if she looks right her left eye flickers and the right eye does not move. This, in my opinion, is the biggest cause of her fatigue, it is scary just how much we take our bodies for granted, it is only when things like MS hit us that we realise just how true it is. We have seen an ophthalmologist who has told my wife and I that her actual vision is perfect, he tried using prisms that were attached to her glasses to see if that would help, unfortunately no.
We have taken it on ourselves to purchase the darkest sun glasses that we could find, we then covered the inside of one of the lenses with medical tape, effectively the same as an eye patch. This helped a little as she was only using one eye for her vision, after a couple of weeks the benefits lapsed and her issues came back. Our optician has suggested that we might try a frosting on one of the lenses, anything is worth a try.
Thanks for looking at my entry.
Regards


californiadreamin
1 month ago

@twinpenny it’s a bit expensive but might be worth considering hsct. I wouldn’t normally suggest it for most but the people that have it comment that fatigue is the main thing that disappeared for them. It’s risky and expensive but given the progression you have had maybe ifs worth considering. While some say it’s only for rrms many have seen it work for all types.

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