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Original poster

Just diagnosed with MS

222 replies

Dededum · 08/07/2013 18:20

Thats it really, not a huge surprise (but I had just been struggling on so hadn't thought about it). DH in America till Saturday, parents in Scotland, kids at home so staying out of there way.

Feel tired, bit teary, a bit relieved that my inability to walk more than ten minutes isn't me being lazy or not determined enough. Just actually that I need to make some life style decisions. Never been ill really in my life, I used to love walking, used to walk all over London. Sad that won't be able to do that again, but happy that I did loads of adventrous stuff when I was younger.

Just wanted to write it down. Thanks for listening.

OP posts:
Original poster
Dededum · 20/07/2013 08:39

Agreed too darn hot! Hurt my knee as well, unrelated to MS, maybe doing yoga - so now can't move too far. Strained various muscles over the years but never my knee so a bit concerned. My neighbour just had an operation on her knee which left her out of action for 6 weeks, ouch.

Invested in a cool pillow of Amazon. Really works and slept well last night.

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LadyMaryQuiteContrary · 20/07/2013 10:34

Knees are sensitive things. Ibuprofen will help with any swelling, and rest. I managed to pull a ligament in mine when I was younger, it was so painful but it did sort itself out. It may help if you went to a yoga class so that the instructor could make sure you don't over-extend bits of you? Pilates is a gentle exercise too. Thanks

Original poster
Dededum · 20/07/2013 13:13

Oh no, it was in a yoga class! Had a session with my yoga teacher, who has experience with MS. We were trying out a few poses and she was giving me variations. My fault though, felt some twinges and didn't stop. Not over exerting at all.

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LadyMaryQuiteContrary · 20/07/2013 13:37

Sad Careful. The heat won't help. I was picking cherries off my tree a couple of days ago and felt something twang in my shoulder. It can be hard knowing when something is MS related and when something isn't.

Original poster
Dededum · 20/07/2013 14:43

Will do, I have a history of twinges and minor aches and sprains so maybe I just need to be more careful.

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pollywollydoodle · 20/07/2013 15:48

yay another chillow convertSmile
i'm sure i heard of scarves made of the same stuff but haven't been able to find them. if anyone does, could you post a link

am in the midlands and it has been beautifully breezy and overcast today Wink

hope all twingeing joints feel better soon

LadyMaryQuiteContrary · 20/07/2013 18:57

Or warm up and down a little better?? Sorry if I'm telling you something you already know. Blush

Original poster
Dededum · 20/07/2013 22:05

LMQC Even though one knows doesn't mean it isn't good to be reminded. My attitude has always been to push through stretches, i knew there was something wrong because I had a left hamstring that wasn't letting go and was just getting tighter. Now, in my MS world, I realise that is a spasm. So having to rethink my attitude to exercise.

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LadyMaryQuiteContrary · 20/07/2013 22:07

It may help to see a MS physio so that he/she can give you a mild exercise regime which will help. It's very important to stay healthy so don't give up! Smile

Original poster
Dededum · 21/07/2013 11:53

Having lunch with mum today, haven't seen her since diagnosis, she is worried about me.

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LadyMaryQuiteContrary · 21/07/2013 11:57

She's your mum, she's bound to be worried. A lot of people don't know anything about MS other than what they see on the TV; a patent who's wheelchair-bound. You need to tell her that this isn't the case. I hope it goes well. Smile

moodyblue · 21/07/2013 16:36

Hope lunch went well dede. I'm trying to remind myself that much as it might bug me I'm still my mum's little girl!

Original poster
Dededum · 21/07/2013 18:35

Went very well, I am the calmest person of everyone!

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pollywollydoodle · 27/07/2013 17:51

how are things going op?

Original poster
Dededum · 30/07/2013 15:17

Thanks for asking Polly.

I am doing really well. My yoga teacher gave me some restorative yoga poses which I try and do twice day. My favourite is lie on your back, put your bum up against the wall and stick your legs up the wall like a L. Do that for 10 minutes - it's great.

Mostly I feel the pressure lift off my shoulders, DH is being much more proactive, Uni course is on hold and when I walk around town with little stress then I feel that it is an achievement. Previoulsy I felt I was lazy/ failure because I couldn't juggle everything effortlessly.

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pollywollydoodle · 31/07/2013 01:15

the plus side of having a diagnosis, i think, is not feeling like a fraud when you let yourself opt out of some things... good for you letting yourself have some space from the stressors.

i think you said upthread that you have no need for dla yet...i wondered, did you know that it's not means tested (i didn't!) and could be used fot whatever you need tp support yourself eg a cleaner / taxis / yoga etc

re ms puns and the like, when i went in for tests i met a lovely lady who told me she had m and s Grin

Original poster
Dededum · 31/07/2013 19:28

Just told my very efficient friend who works for the CAB and she mentioned DLA as well.

The thing that I am struggling with at the moment is what the MS means for future work etc.. Not working and at the moment the thought of finishing my Masters doesn't feel appealing and now wouldn't be in a position to get a job related to it, so what is the point. Think I should find a local job/voluntary role with a sympathetic boss. I have a couple in mind, an old boss and a voluntary role I would be good at. To think that at the age of mid 40's ( a spring chicken really), stack loads of education I am reduced to pootling around. My dad is still working at the age of 70 in a pretty high powered, though part time role.

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pollywollydoodle · 01/08/2013 00:46

it is hard...i worked in hospitals for @ 10 years after diagnosis, gradually
becoming more part time. i was nudged to think about retirement by my boss after ML then sick leave.

At the time it felt like a disaster but in retrospect it truly was a blessing in terms of being given permission to just stop...and re evaluate my priorities. i was lucky that i had taken out an income protection policy and i qualified for dla. so i didn't have to work just to survive

pollywollydoodle · 01/08/2013 00:50

take your time to find something that suits you and is flexible

LadyMaryQuiteContrary · 02/08/2013 13:52

I freelance so I can turn work down if I'm feeling too unwell. It gets topped up by tax credits/DLA so I can live. Smile

Original poster
Dededum · 02/08/2013 15:15

Thanks, so darn hot and feel totally shattered. It's like since the diagnosis, everything has shut down and I just want to sit down, drink tea and do very little. Can't remember if I was like this before D Day. Motly stressed I think as I struggled with dissertation.

Had coffee with friend today. Lovely and supportive. She is kind if talkative and after 2 hours feel a bit knackered. Over the last few years really struggled with social gatherings. Never the most extrovert of people but could always find the energy to power through things and talk to people.
My friend was remembering MS type stuff - like the time I went out with her and other friend and was exhausted for no reason. Looking back I thought it was them, not giving me space to talk, not having anything in common etc.. But maybe just the tiredness doing strange things to my mind? Does that sound familiar ladies?

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pollywollydoodle · 02/08/2013 15:38

it does! it took me ages to accept that going for a coffee and a natter/ to book group/ out for a meal wore me out...even if they were pleasant occasions with nice people....it's worse for me if i have more than a glass of wine/heavy hot food/it's with people i don't know well

LadyMaryQuiteContrary · 02/08/2013 15:47

Yes, very. I tried to hold down a full time job and I'm a single parent and the more I tried, the more exhausted I became. Problem is, the more you sleep, the more tired you become so please do be careful. There is medication that you can get to help you stay awake if you need it. Acupuncture was a great help with this though. You're still adjusting to being diagnosed as it's not easy, be kind to yourself x

Little tips;

Try not to eat carbs during the day as these will give you an afternoon slump.

Try to stay active but little bits and often not a huge run.

Try to get a good nights sleep. Use a mattress topper if you're bed is uncomfortable. Don't have an early night, try not to nap during the day (but if you do, don't nap after 5pm).

Don't drink a lot of caffine/sugar based drinks in an attempt to stay awake as they will help for a little while but your energy levels will slump.

Don't nap too much!!

Fans can help with the heat, as can a very cheap squirty bottle filled with cold water. Squirt it in your face and leave it to evaporate.

Original poster
Dededum · 02/08/2013 17:09

Aaaagh, that's why I never really feel refreshed when I get up. Very stiff legs and often getting up in the night to go to the toilet at least once. Slump in the early afternoon... Then perk up early in the early evening / now.

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LadyMaryQuiteContrary · 02/08/2013 17:23

Disturbed sleep causes so many issues. Sad Have you tried limiting your fluid intake from around 7pm? It may help if you're waking to go to the loo, make sure your mattress is comfy (mattress toper - £38- is one of the best things that I've ever bought.), this will help with the stiff legs. Pasta/bread at lunch time is very bad as the carbs will make you sleepy. Try having these for supper though as it will help you get off to sleep. Smile