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  • How to stay busy with MS?
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Living with multiple sclerosis

How to stay busy with MS?

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avatar Pleasance

Pleasance

02/01/2019 at 15:04

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avatar Pleasance

Pleasance

Last activity on 16/05/2023 at 11:23

Joined in 2014


63 comments posted | 29 in the Living with multiple sclerosis group


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Hello,

I haven't been working for a while because my MS is flaring up. I'd like to know how you stay busy, what you do all day... I'm very bored!

Thank you

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avatar Yank34

Yank34

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16/01/2019 at 17:01

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avatar Yank34

Yank34

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Last activity on 02/07/2025 at 16:40

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291 comments posted | 59 in the Living with multiple sclerosis group

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Hi Pleasance.  I'm sure everyone here with MS can certainly empathise with you....although every single person with MS will naturally have a multitude of different experiences, one thing I am pretty sure that is true is: MS is UNPREDICTABLE!  I actually started with MS in 1978 but although MS was queried by the Neurolgist I saw privately (my excruciating one-sided facial pain couldn't wait 9 months to be seen via the NHS)  his diagnosis was trigeminal neuralgia, even though he identified I also had a pronounced 1-sided weakness (unbeknownst to myself) and a few weeks after initially seeing him, the trigeminal neuralgia "moved" to the other side of the face!  It wasn't until March 2013, after experiencing continual double vision, followed almost 2 weeks later by 1-sided "pins and needles", weakness, tremor and after 3 weeks of all of this starting, had a hypertensive "crisis" (bp was "sky high - 210/180", pulse 120 and a migraine lasting 3+ days, needed to present myself to A+ E.  Was in hospital for about 5 days - all of the Drs were convinced I had a brain stem stroke except a Neurologist, from another hospital who totally disagreed, saying it was MS.  Both myself (a retired Qualified Nurse) and my MS Nurse, have come to the same conclusion that until the above continuous events, I'd had RRMS but after 35 years, now had Secondary MS (the Neurologist I saw a few years ago categorically stated I did NOT have Progressive MS).  I had attributed so many incidents i.e. having to walk "straight-legged" at various times, unable to "bend" 1 of my knees sometimes for as little as 1-2 hrs, other times for 3-4 days, varying months and months of fatigue, umpteen times being unable to find words, forgetting how to do simple tasks, frequently falling, staggering etc throughout these years.  The A + E Consultant, before I was admitted to a ward, actually asked myself what I thought was the problem and immediately replied, "It's MS" - instantly, all of my symptoms "fell into place"!  Enough of that...…...what do I do to keep myself busy?  It all depends on how I feel any hour, day, night etc!!!!  I can still independently mobilise and drive BUT my walking probably doesn't look "normal" and only drive when I feel "safe enough to do this" which is becoming much less frequent, hence spend most of my time in the house.  Social Media, i.e. Face Book and other MS "forums" clearly demonstrate none of us are on our own MS "journeys" alone and can always choose to either actively participate or just find out about others, depending on how I feel.  Reading books, watching TV, watching the birds in my garden, the many neighbourhood cats, doing puzzles - jigsaws, crosswords etc.  When I am able, have enough energy, I do my housework, cook, bake BUT unfortunately especially cooking sooooooo takes it out of me and therefore usually unable to do anything else i.e. regularly have to leave the washing up, tidying the mess I made etc until the next day!  Please know Pleasance you are NOT on your own and if there is anything I can ever do, will do my utmost to "be there for you" Ann x

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Ann


How to stay busy with MS? https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/how-to-stay-busy-with-ms-2669 2019-01-16 17:01:30

avatar Shaz1968

Shaz1968

17/01/2019 at 00:48

avatar Shaz1968

Shaz1968

Last activity on 03/06/2025 at 19:26

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@Pleasance  I have a little dog who keeps me company, curls up with me when I'm feeling tired, do social media to keep in touch with people, old school friends, news and so on.


How to stay busy with MS? https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/how-to-stay-busy-with-ms-2669 2019-01-17 00:48:35

avatar Pleasance

Pleasance

Edited on 21/01/2019 at 10:17

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avatar Pleasance

Pleasance

Last activity on 16/05/2023 at 11:23

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63 comments posted | 29 in the Living with multiple sclerosis group


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@trish444 @Shaz1968 @Yank34 Thank you all for your suggestions and stories and support. I think I will see about adopting an old dog that doesn't need as much exercise as a puppy. That way we can both keep each other company!

I bought some jigsaw puzzles online as well so that will help to keep me occupied. some days are just so much harder than others...Thank you all so much xxx

 

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Pleasance


How to stay busy with MS? https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/how-to-stay-busy-with-ms-2669 2019-01-21 10:17:12

avatar Yank34

Yank34

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21/01/2019 at 14:14

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avatar Yank34

Yank34

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Last activity on 02/07/2025 at 16:40

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291 comments posted | 59 in the Living with multiple sclerosis group

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Please rest assured Pleasance that I'm sure we ALL have some days that are harder than others!  Oh, the joys of MS's infamous unpredictability!!! xx

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Ann


How to stay busy with MS? https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/how-to-stay-busy-with-ms-2669 2019-01-21 14:14:55

avatar Pleasance

Pleasance

08/03/2019 at 17:00

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avatar Pleasance

Pleasance

Last activity on 16/05/2023 at 11:23

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63 comments posted | 29 in the Living with multiple sclerosis group


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@Yank34 @Shaz1968 @trish444 Thought I would fill you guys in on my updates:

My neighbour has kindly let me "borrow her dog" a few times a week for company. It's lovely for both of us, so we are both winning!

I bought Netflix. Probably not the best, but I am very entertained! 

 

Hope you're all well xxx

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Pleasance


How to stay busy with MS? https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/how-to-stay-busy-with-ms-2669 2019-03-08 17:00:41
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