Help Im in bits

New diagnosis and before diagnosis
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dont know if Ive posted on right bit… Im 51 was a crazy happy mam and wife and now i dont know who I am,… optic neuritis July 2020, pretty much said yes MS accepted it albit gutted, letter in Dec 2020 confirming it and reading it in black and white killed me even tho I knew.

Now suffering with flare ups only recently realised thats the same as relapse, Im just sick, have what they call Cog Fog, cant work like I did as secretary (still have my job but been off sick) too many questions floating around, Hospital GP and MS nurse great and waiting for Neuropsychiatrist… dunno what to say…

Got new meds from GP antidepressants yeh felt bit better weeks later but yesterday arm dead pins needles feels like an elastic band is being twanged or snapped… that set me off bawling my eyes out yet again which is all I seem to do… then been told that the stress is making it worse setting things off so I’m stuck in a vicious circle… last night my speech went funny as it did a while ago, stammer stuttering, but yeh its stress doing it it, how do I stop myself? what do I do, feel so alone even tho NHS been great and husband is fab (married 28 years)… caught him crying in secret, I feel so guilty… put on brave face normal Claire one minute then crying the next sick of lying to myself, where does it end, what do I do. Just need someone to say LISTEN … THIS IS WHAT YOU DO and I will. I hope I get some replies to this because I am so at rock bottom (other bad health family problems and care for x4 people, I am sooo tired, Im sick man) sorry

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Hello Claire

Your reaction is perfectly sane and normal. Please don’t worry about that. MS is a sod of a disease. Diagnosis is horrible and there’s no two ways about that.

Yes, it will affect your mental state, your equilibrium, just as it can give you cog fog, or cognitive problems.

EEG has said a flare is old symptoms but a relapse is new. I actually disagree with that (sorry EEG!). I personally hate the term ‘flare’. Often MS nurses use it interchangeably with the word relapse. Others will use it to describe existing symptoms. It’s a bit unhelpful really.

Tranquillisers should help for a while till you get your head around having MS. Your husband could probably use either someone to speak to or some pharmaceutical help himself (he can always join here, post on the Carers section of the forum, anonymously if he prefers it). Don’t forget, it’s you has the diagnosis, but it affects the whole family.

I assume (hope) your MS nurse and neurologist are talking to you about starting a disease modifying drug? These are designed to reduce the number and severity of relapses. Being on a good DMD is absolutely essential to help you to live as normal a life as possible. For many people, diagnosis is a shock but once over that, on a good drug to stop the relapses, other drugs to help ongoing symptoms (if necessary) and maybe with some help for cognitive issues, you’ll be back virtually to your normal life. Even if it is a kind of ‘new normal’.

The forum members on this site are very good at helping you to get a handle on MS. We’ll try to help out with information, guide you to helpful websites and basically be listening virtual ears.

Meanwhile, here’s a link to an MS Trust ‘Decision Aid’ all about DMDs. You basically have to figure out what you can get (talk to your nurse), then weigh up the benefits (potential relapse reduction rate) versus the costs (possible side effects): MS Decisions aid | MS Trust

Also, another link about cog fog: https://mstrust.org.uk/symptoms/cognition-and-thinking I’ve had psychological testing for the fog. Basically it’s just a case of sitting down with a psychologist and running through a series of questions. Subsequently you’ll get a copy of a report. This in itself isn’t terribly useful - often just reinforces what you already know. So pages like the MS Trust one have useful hints as to how to cope. To be honest, once you get past the shock of diagnosis, and are sorted as to how to coexist with MS, you may find the fog lifts a bit anyway.

Best of luck.

Sue

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OK this is what you do. You have to put all this into perspective. You are still a mother and a wife. Thats first ok. Your still you. Sadly you have been dealt a blow with the diagnosis of MS. BUT its RRMS i believe if you are having relapses. Is that good? Hell yes you could have been told you had PPMS where there is nothing much for us. RRMS has DMD. You can stabilse your condition but you wont in the state your in.

At 51 so many things can go wrong with us lol. So you sound a solid person, funny loving, a great mother and wife. Let me tell you something. I went blind in 2000 yes BLIND, then recovered and it took six more years after several more attacks to be told it was ON. I am 70 this year, and have been through hell and back not with my MS but other things. The worse one being the loss first of my beloved mum 2016 (just before my diagnosis), and then 2017 my beloved husband we had been together 30 years.

Perspective. You have MS it is not a death sentence. Many many carry on working and go on holiday. The way to get through this is accepting it you cant change it sadly its here to stay. The best way to deal with it make friends with it, lol, yeh i know i am a looney tune. BUT it didnt ask to invade your body it was invited in by your auto immune system. so you have it hey girl something else you will have too which is actually inevitable is the MENOPAUSE, believe me that can throw out some weird weird stuff lol…and last over 10 years lol.

So your in shock right now. You are grieving for the person you once was, sadly she isnt there anymore, you have to welcome into your life the NEW YOU, the one with a disease that will try your paitence, make you act irrationally throw up scary stuff, etc etc. ONE THING I CAN SAY for sure is the more you stress the worse it gets.

So what you going to do about it. Get busy find things to do, get a dog, go for walks, start a blog type your thoughts, join groups, talk to other mums, start knitting or crochet, PLAN to go away for a holiday, get HEALTHY, read up all you can about DEALING with MS. Write i book anything but dont just sit there looking at a blank wall. CUDDLE your hubby and say its ok it will be ok. WE WILL MAKE IT OK TOGETHER. sit the kids down explain to them. You need to start up as a family unit like an army, to fight it, and help you get through the relapse, you learn to PACE, what is important what isnt, do not scare the children ok. give them resbonsibility you dont say how old they are.

stop being a victim of MS and start being YOU again your still there hun, look in the mirror who do you see? Put a bit of slap on nice dress, go out for a meal if you feel like it. Listen to music take calming times for yourself.

one step at a time the first step is acceptance, yes and get angry why shouldnt you, but that doesnt help i found that out.

this is my story. for what it is worth.

BIG HUGS you can do this. YOU CAN ALL DO THIS, its a family thing. Just when you get used to your MS the hot flashes will start lol…oh the joys of being a women.

who was i before i got sick Edit Post ‹ My Journey with MS — WordPress.com

My journey with MS: The beginning – My Journey begins in Brazil. – My Journey with MS (livingdailywithmultiplesclerosis.com)

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Nice post CC…

What we all need, something to make us smile. And yes, to remember who we are apart from the MS. We are still the same people we always were. Some of my friends would say I’m exactly who I was (all those years ago!) before MS waltzed into my life. Still bossy, still a tad OCD (manic bathroom cleaner!), still obsessed with food (cooking, not just eating!), still Sue.

Just as Claire is still Claire despite the diagnosis, once she gets over the initial shock. She will once more be the ‘crazy, happy mam and wife’. Her husband will still be the fab man he always was.

Personally, I’m not a big fan of ‘acceptance’. I didn’t invite MS in, even if my immune system is happy with it. I have at best made accommodations for MS, learned to co-exist. Let’s face it, I had no choice, it was going nowhere. You’ll learn to do this too Claire and will be happy again. Honest.

Sue

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Hello Claireabullie
It is so hard when you first get diagnosed. I cried, bawled my eyes out, for weeks in private. It is so hard. The advice people on the site have given you is brilliant and there is not much I can add. How did I cope - I concentrated on what I could do and appreciated it. Tried not to dwell on loss but what I still have. I learnt to Avoid stress and meditate to help. I laugh at myself a lot.
Remember things will get better, take a deep breath, smile and look for a positive. Sending hugs xxx

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FORGOT but my left arm has gone like my right arm, does that mean I have a new lesion, asked MS nurse if I could get an earlier scan she said dont think so its too early will have to wait until August. Get this she said doubt my left arm is lesion as you dont get opposite symptoms. I didnt mean like a mirror image (cant think of term), just mean same feelings doesnt mean the new lesion will be symetrical to the other one, know what I mean?

Anyway shes going to ask Dr at RVI Newcastle… is anybody up my neck of the woods ?

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Hi Everyone xx (taken me a week to reply as was upset reading it, but Ive calmed down - still need to read the links tho)

A big thank you because this honestly means a lot. Its sad that I got excited talking to someone who’s friend had MS I felt like stalking her friend to talk to her lol xxx I will always have my sense of humour, like I said was called Crazy Claire in the office.

I hope everyone can see this response as it’s for you all :purple_heart:

EEG you just dont realise you are beating yourself up but suppose I am.

GP, he is so lovely, wish I could give him to you girls. Was already on antidepressants (saw Dom V all the time at home until 16 - have managed to break away from my mam, killed me was depressed but 5 year later Im okay but still on tablets) and been back to GP today, increased dosage as I am feeling a bit better so know with this boost and mindfulness about it all I’ll get there.

spoke with MS nurse today, relapse is a “NEW” symptom and even lesions without any symptoms, so flare up is aggravated old MS symptom , with me stress aggravated MS so it started being angry me at me the (removed by moderator) that it is x

Have lots of learning to do:-

dont be hard on myself
try and accept it
so what if shit goes wrong, it happens (anyone who s worth anything should understand, including work colleagues)

You have all said some great things useful and reassuring. But I know at end of the day only I can put this right and I WILL get used to it, learn to cope

Menopause, my periods are hit miss then just odd shows and this week woke up four nights a row soaking as if went to bed on a wet towel, soooo yehhhhhhh gurls thats a goodun too !

There are so many things I could say and respond to your comments but I cant right now.

Also, although stopped speaking seeing my mam 5 yr ago, at start of pandemic I took food etc said look whats going on lets just agree to disagree, she wouldnt. Then in February she was ill, alcoholic turned injection diabetic, found her in a coma, two sets of paramedics working on her on the floor Im crying mam mam please wake up, come back, yes we got her back, saw her in hospital, caught COVID there and lost her. My daughter Sophie 24 devastated and son Nathan 21, we said our goodbyes… this has been one tough time. Trying to cop e with the grief of losing her and anger at our relationship BUT as my husband Dave keeps saying, ITS NOT YOUR FAULT… she was in charge of her life, self inflicted, her life choices but just not strong enough to sort things out for herself let alone me (only child) and her grandkids… So its been a (removed by moderator) 9 months since start of MS, this is normal that Im stressed and almost at breaking point… Dont think I would be normal if I wasnt,… dont you ? But Im fine, I will be xxx thank you so much my MS GIRLS :kiss: :kiss: