For the last 3 days I’ve been feeling very much ‘under par’ - legs more painful & harder to walk very far. I’ve also had some slight dizziness and not been able to sleep due to a sort of restless feeling.
Today 'though, it all seemed to come to a head. I just felt so unwell but couldn’t explain what it felt like. My neighbour very kindly got a little bit of shopping I needed as I didn’t feel well enough to go out. When she came back & I was paying her I couldn’t count the money - couldn’t make out which coins added up to 38p change .
The pain in my legs was bad, like a gripping, tight pain, then I started to shiver. Took my temperature & it was 35.9 deg. So odd to have a low temperature when the temperature outside is sizzling (I’m in the London heat!). I just had to lay down for the afternoon & if someone had phoned or knocked I wouldn’t have had the energy to answer them. Made me a bit weepy too. Feeling better this evening after final dose of Pregabalin.
Has anyone else had this feeling of your ‘body shutting down’? The thing about counting the coins scared me 'though as I had spent all of my working life in Finance!!
Would appreciate any words of wisdom or reassurance that I’m not going mad, lol!
I have not had a MS diagnosis but I completly relate to what you have said. The heat has really impacted on my health this last week and I’m wondering if it’s the same for you.
I posted on here sometime ago and asked that very same question. Does anyone ever feel like there body id shutting down? The main response was YES! It’s a frightening place to be and I can empathise with your fears.
I don’t know what to advice or how to help other than to say that I completely recognise your symptoms, even the confusion over the money. I find that I do know what it is but I find it very hard to process it in my mind. I can’t quite get the peices to fit together but slowly after some hard work and guessing from others about what I’m trying to say, I get there.
Rest up and take it easy. For sure that stress and anxiety will only exasperate these symptoms further.
I do like to place a cold flannel on my feet which helps my restless twitching legs, maybe give this a go.
I have not had a MS diagnosis but I completly relate to what you have said. The heat has really impacted on my health this last week and I’m wondering if it’s the same for you.
I posted on here sometime ago and asked that very same question. Does anyone ever feel like there body id shutting down? The main response was YES! It’s a frightening place to be and I can empathise with your fears.
I don’t know what to advice or how to help other than to say that I completely recognise your symptoms, even the confusion over the money. I find that I do know what it is but I find it very hard to process it in my mind. I can’t quite get the peices to fit together but slowly after some hard work and guessing from others about what I’m trying to say, I get there.
Rest up and take it easy. For sure that stress and anxiety will only exasperate these symptoms further.
I do like to place a cold flannel on my feet which helps my restless twitching legs, maybe give this a go.
I too have really suffered in this heat. My legs have almost totally given up on me. I don’t know if this is what caused your body all these problems Bren but it does seem as if it could be! My brain seems to go really blank sometimes and calculations seem to be beyond me and I’m not an idiot but I certainly feel like one sometimes. So I know how you feel, you are definitely not going mad. Teresa xx
Thanks so much Mandy & Teresa for your replies. I’m relieved that you too have had this difficulty with money/calculations - phew!
I hadn’t thought it could be caused by the heat, but you’re probably right. I’ve also had a couple of stressful days with deadline jobs to do, so maybe that didn’t help either.
I really appreciate you replying - your explanations of how it feels for you are so ‘spot on’.
This site is so great for having those who really do understand what we’re going through.
I’ve not suffered much with the heat so far touches wood but I would be scared too about the money counting. I have such a terrible memory. Lately it has been even worse though. I have little post-it notes everywhere! But then I forget to even look at them. SO frustrating.
You’re not going mad.
Take it easy and don’t be too hard on yourself.
You have a lot to cope with and counting out 38p is the least of your worries right now. Don’t stress the little things.
For what it’s worth, you’re not alone. If it makes you feel any better, I’ve done SO many silly things – I’ve even forgotten how to spell my own name and gotten lost in my own town (that I’ve lived in for 10 years!). The heat definitely makes things harder to deal with. Like you, I consider myself an intelligent person – but sometimes my body just rebels against me and I can’t do basic things without difficulty.
The good news is that you have people here who can understand exactly what it feels like, and sympathize with you completely. It will pass. In the meantime, take it as easy as possible.
Bren i too can relate to that this week, the shop gave me the change and i said it wasn’t right. It was but for the life of me i couldn’t work it out. I have also had a few day’s i have felt so ill but couldn’t explain why i felt ill. (hugs) from a limbolander.
Totally with you - I’ve been trying to explain to my GP since 1986 that my body feels like it shuts down. Over the years this has become more and more regular to the point where it happens every day now. Mostly around 7pm and I’m experienced enough now to recognise the signs so I make sure the house is locked up and I get myself upstairs and into bed into a ‘safe’ environment so that my son does not have to do anything for me. However, sometimes the ‘shutdown’ comes on at 3 or 4pm and I can’t cook tea or do anything. When these ‘shutdowns’ happen its like I cannot function either physically or mentally. I feel like my body cannot support it’s own weight or frame, I just crumble. It means I have no life in the evenings so no social life and people have stopped inviting me to dinner dances etc.
As for counting money, yes this has happened to me in Waitrose, I opened my purse to pay for a coffee and had no idea or concept what money was at that point. I was so embarrassed I just passed my purse to the girl and shrugged my shoulders by way of apology. At these moments I just wish I could wear a badge or flash a card that says something like ‘MS please help’ or ‘MS thank you for being patient’. Perhaps I will make one when I’m finally diagnosed - yep, still a limbolander!
Oh, thanks so much everyone for your support - I can’t tell you lovely it is to know I’m not alone in this - sometimes it’s scary.
I too have post-it notes or bits of paper everywhere + 2 diaries! A couple of weeks ago I forgot my own phone number, and then the money thing this week freaked me out! Dianne, it must have been awful for you when you were in Waitrose - at least it was only my neighbour who I was trying to give change to & she’s very understanding.
The other thing that happened yesterday was that my taste changed. I made a cup of ‘comforting’ hot chocolate & it tasted bitter!! I then had a small glass of Ribena & I couldn’t taste it at all, was just like drinking water. Never had that before! Thankfully, taste has returned today.
Being in Limbo, like many of you, I just don’t know what to say to people when these things happen - at least it would be good to have a ‘reason’ to give them!
Thanks again & hope you’re in a cool place just now - I’m sitting in my room with curtains closed, lol! Take good care everyone,
I have always been a ‘list’ person. Writing down a list of tasks and then smiling gleefully as I tick each item off.
Now… I forget to look at my list or forgot where I put it!
Found a solution and it helps massively. I make a note in my mobile phone and set each item to go off as an alarm at the appropriate time. Don’t know how I lived without it.
Obviously it does not help when I forget my phone number or am near on arguing with a customer services dept about how rubbish they are, when actually its me, getting numbers the wrong way round etc, Doh!
We just have to find tools to help us along the way and try and laugh when we get things muddled up but that depends on what mood we are in! ha, ha.
Hang in there Bren it will pass,and as you can see its just part of the ms ride.
It seems to me that alot of people when the brain farts kick in find it to be with an activity they have spent most of their life doing,and those are the ones that are most distressing.
I have spent my whole working life doing complex medication rounds and multi tasking between procedures that all start at the same time but get switched off at different times whilst continuing with the general rounds.
I have had to buy a pill box and take tablets after an alarm reminder and fixed rule that I take them as soon as the alarm goes off…cant believe its come to that,but it has and without it I cant remember if Ive had them or not, so its a safe way round it.
Hope you are feeling more yourself today and if your not then accept that its a doing nothing day and dont feel guilty about it, as in the long run it will do you more good than fighting it.
the last 1-2 week I was in the middle of a new flare up and kept mixing my words and using spoonerisms. Hot tea became Tot heaand high five was figh hive… it was really embarassing at work and with the patients. I only really realised after I appologised like the fifteenth time for not being able to get the words out of my mouth and then it dawned on me that I’d been doing it a lot over the last week.
Foggy brain, brain farts and all the rest it seems comes paert and parcel with our neuro symptoms.
Thanks so much Clare, Pip & Reemz for your support, empathy & advice.
Having been through these last few days, I guess I’ll be able to identify the cause if these things happen again & make sure I rest up.
Using ‘tools’ like the phone reminder, pill boxes etc are a brilliant idea & I’ll defo put those in action.
I really appreciate you all taking the time to reply - your reassurances are so helpful. This site is so great for support - don’t know how I would cope without you all .
Hi Bren. I have to write everything down in my phone reminder and on post it notes. However, I generally lose the post it notes, and forget my phone lol. I have to check and double check everything I do too as it always feels like I have forgotten something anyway. I forget words when Im in the middle of a conversation too, which is always embarrassing; but helpful in some ways when I see the GP and stop halfway through my sentence because I have forgotten what I was saying; kinda emphasizes the point to the GP lol.
Bren, I do understand what you mean. It’s not so much the heat it’s humidity with me. I sit next to a fan all day.
For years I would get spasmy, shivery and feel so cold as though ice was being poured through my body. I would have to put layers on and climb into bed. My family would take my temp and I was bordering on hypothermia.
I’ve found this happens when I’m really fatigued and I have to sleep. My Mum has another neuro condition that affects her spinal cord and she gets like this too. Many people seem to have trouble regulating their temperature and it’s part of the autonomic nervous system.
Thanks so much for your hugs & support & reassurance I’m not alone with these weird feelings - feeling a bit better this week, 'though not been further than over the road since last Thursday!
Jacqui, that’s interesting about the autonomic nervous system - I’ve not known anything about that before. Seems like fatigue is the big trigger for the coldness 'though. Fatigue is the ‘killer’ for a lot of things isn’t it?
I know you’re all going through tough times right now too, so I appreciate you taking the time to reply all the more. Thanks lots - take good care,