Self pity

Hi hun, that sounds much more positive.

I think it was an accumulation of things, not necessarily just the exercise.

OMG I AM SO JEALOUS of you lol, you can have hot showers bah humbug he he. I have a shower and literally have to have help i end up like a melted jelly on the floor lol. The heat i suffer wth Uthoffs syndrome just wipes me out it was one of my first symptoms, getting stuck in the bath as i couldnt get up wasnt my finest moment lol, and my poor husband had to try and pick me up out of the bath i nearly killed him bless. In the end i had to just pull the plug and lay there and as i cooled down i could feel my legs and managed with his help to get out. That was my last bath (oh i do wash lol), we had a walk in shower fitted.

I hate the heat ugh.

MS is just the Joker of a card pack. You never know what will happen each day. I have learnt now over the years if i have a good nights sleep i am going to have a bad day lol. If i sleep like poop i have a lovely day. Nothing makes sense. Its like going for a free disney ride up and down, down and up where you land no one knows lol.

Its sneaky too just when you feel great it will pull the rug from under your feet. I think it has finally done that with you, an accumulation of things, probably led to this, but it is just a glitch it too will pass. But you have to learn to respect it. Give yourself some rest there is no harm in that, just chill out have lazy days enjoy some netflix or amazon cuddle up with hubby play games with the kids, but just dont push yourself. its a time to heal. You will heal. Get internally healthy, eat well i expect you do anyway. I found i was sensitive to gluten and wheat and weirdly bakers yeast ( i had a test for all foods i was sensitive too), and i avoid, i find that gluten makes my legs burn as its a natural irritant to inflammation process.

A dip stick test can have infection that isnt always shown up. it should always be sent off. I find when i have done too much or got too hot or tired i have burning urine, i check my own urine we have a system me and my nurse in surgery i have sticks and i test it first most times its fine, if it isnt a bottle of the hard stuff goes down to her and she checks it then sends it to lab.

I am so pleased your husband is going to talk more and yes his sister needs to just listen and be there for him.

Can you tell him from me. You do not die of MS. No you dont. I know people who have had RRMS since the SEVENTIES and still doing fine.

My sisters mother in law well she had MS and she died at 82 she had it FORTY YEARS, she actually sadly died of diabetic complications, nothing to do with her MS. Now you see he has this in his head. His fathers grandmother could have died of anything and just had MS at the time. She may well have been diabetic. Way back then treatment of MS was pretty hit and miss and little known of it. Did you know for example that the test for MS was putting someone in bath of hot water (not scalding lol but warm), and seeing how it affected them. Its a fact now that 60 - 80% of people with MS suffer with Uthoffs syndrome (lucky you not jealous honestly lol) So if you couldnt get out of the bath (like what happened to me) you could be diagnsoed with MS.

we have come along way since then. I would suggest his grandmother died of something like heart, diabetes, or even perhaps a bad complication which in those days wasnt taken seriously.

You need to say to him its not YOU he needs to worry about it is his health that is going to suffer if he keeps hitting the bottle it doesnt take long for the demon drink to get to your organs and cause havoc sadly i have seen its devastating effects.

As he has this vision and is worried i think proper counselling would probably help him or even talking to MS society help line, as they can reassure him.

Your post is so much more positive. I am pleased you keep talking the guys on here are amazing and will always reassure you and try to help you.

MS is a disease which can screw with our minds, our bodies, our sight if we let it. Knowing what it is capable of is half the battle to dealing with it. Dont be scared as its all neurological. I have a saying. People say to me but you look so well… So i say "why shouldnt i look well, i am not sick I am just NEUROLOGICALLY CHALLENGED… lol…and it always makes them smile, as overall beleive it or not at 67 i am touch wood probably more healthy then most of my family, friends who suffer with a mirade of things from RA, arthritis, diabetes, thyroiditis, fibromyalgia, M.E., lupus, dysautomia, heart problems (2 friends just had heart stents)POTS, cancers (various sister had double mastectomy), sadly my eldest brother has wet mecullar disease in his eyes, other brother just had new knee waiting on new hip…my poor daughter 44 is waiting for MRI results for her neck as she has genetic disorder where her discs are collapsing and do you know what Raven, I think i am BLESSED LOL with MS.

Everyone i know who had the flu injection has had flu.

I have just got over my first virus (cold one) in TWENTY YEARS.

So having MS doesnt mean we have a weak body or are sickly, we just have frayed electric cord which needs a bit of electric tape to stop the electricity leaking out lol. Believe it or not mylin sheaf can repair itself although this is still very rare.

Yes exercise is ok for you, but gentle, walking is good, swimming as you dont mind heat is even better, nothing wrong in some exercise. I just think it was an accumulation of stuff that probably finally hit you.

Sorry i tend to ramble on lol. So i better go off and annoying someone else lol.

You will get there honestly. As you have had this relapse after 9 years you need to be reassessed by your neuro i think.

take care. big hugs. xxxxxxxx

I am sure you said you were seeing someone today, if so good luck.

this is a good link. What is MS? - MS-UK

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Thanks for your reply Crazy Chick, I feel for you not being able to take hot baths Having said that, my hot shower this morning did not make me feel good!

So I had my meeting with an MS nurse yesterday and she confirmed this relapse is sensory only, which I guess is good news? She spoke to the MS neurological specialist here and he doesn’t want to see me at this point. From my symptoms he can pinpoint where in my brain the relapse is occurring so no need for a new MRI scan. I have an appointment with him on the 15th of April to discuss the next step but it’s already been suggested I may not be eligible for any long term medication because I’ve “only” had 2 attacks in 9 years and this one is “only” sensory not mobility

As for me, my symptoms are thankfully no worse, possibly slightly better. The tightening across my abdomen seems to have lessened slightly but my legs are still paining me. I am also now struggling with the after effects of steroids; I feel quivery and my heart races, but I’m told this should ease by the end of the week. I’m not sleeping well but again this should improve soon.

Overall I guess I’m slightly more upbeat than I was, but boy has this relapse hit me where it hurts. You don’t realise quite how much you do as a mother of 2 until you can’t do it! And it’s half term, bloody brilliant timing! But I’m doing ok, I haven’t cried today or yesterday, so that’s a big plus for me

x

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Morning Raven, phew what a relief, so you have had what is known as a mild relapse (sensory). Basically i just think its the MonSter reminding you that its there and giving you a little electric jolt to the fact. Like a cattle prod, OI you slow down or else lol… buzzzzzzzzzzzzzzz.

So its good and bad in a way because its reminding you that you have limits.

The worse thing for you now is getting over the after affects of the steroids, horrible things, but i think they are doing ther job slowly i know my husband was always told they can carry on working for about 7 days after you stop taking them.

Yes it always ceases to amaze me how mums want to do more exercise when they have 2 children lol. I mean seriously. If you look at your timetable for each day, just find one spot when you can actually draw a breath, put your feet up and have a coffee and biscuits (orwhatever you enjoy), i bet most mums never really get to sit down and do something for themselves. I said that to a friend yesterday she hasnt got MS thank god, but boy she fair wears me out. she is always taking a grown up teenager somewhere, walking dogs, doing her walk, keeping house, its non stop. i said to her when have you ever actually done something for just you, like had your nails or hair done, she said NEVER. So question Raven, when have you ever done something for yourself, nails or hair done, or just gone cloth shopping, or even had a nice massage?

To ALL mums always remember to take that time for YOU. I used too. Oh boy yes i did. even went to cinema on my own or with a friend in the morning.

Anyway the children can be amused with books and games or even have a sofa morning and binge on walt disney films and lots of popcorn and cuddles.

I am so glad you are feeling better.

Long may it last and just remember it is there your MS and you need to respect its presence, and you need to give your body rest too. I hope you can sort your hubby out, maybe get baby sitter in and go out a bit more together and enjoy some YOU TIME with him and over time he will see that its not so scary after all. Just a drink, or a nice meal. Maybe a bit of romance lol…nudge nudge wink wink when your feeling better of course.

BIG HUGE HUGS. Hopefully by mid march you will be fully recovered. xxxxxxxxxxx

Thank you, it’s strange to hear it described as mild when it’s anything but mild to me, but I get where you’re coming from. I’ll learn to treat myself a little kinder once I’m fully recovered. It could be the best thing to be honest, as now my husband is also fully aware of what I do and is exhausted, so perhaps I’ll get a little more help :slight_smile:

I honestly don’t do much for myself, but I will start giving myself some time each day to just sit. I love jigsaws so that might be a nice thing to start doing again (I know I’m a geek!) Running was kind of for me, it was time to myself everyday where I got to listen to my music and just be me. And I enjoyed feeling like I was getting stronger and fitter, that made me feel good but I guess I’ll have to rethink that too?

Being reminded of my condition (something I had prayed so hard was incorrect) will adjust how I live, it’s hard to ignore the facts now, and anything I can do to not feel like this again, well sign me up!

Hi raven you will get through this and be back to yourself again.

why not go for walks when you feel a bit more like yourself and listen to your music. A relapse is not permanent hun you should get a lot better.

Yes and sometimes it needs a relapse so that your husband your family can finally understand what MS is all about hun. Have a lovely weekend ok and yes jigsaws is a great idea, i know a few of my friends are crazy over colouring now. xxx