Hi guys, things have gone downhill a bit for me recently and I’d really value your input. I was given my diagnosis just over a year ago of RRMS which has since been changed to Progressive due to numerous subtle deteriorations rather than an episodic path for me. Work is busy and stressful and I’m not coping well. Memory issues are starting to become more noticeable all the time and despite having been tested today by the OT and performing quite well, in a busy workplace with loads to do and people asking me stuff all the time, I’m definitely not with it like I used to be. I’m also having mood swings and I’m generally feeling a bit tearful and overwhelmed by it all. Has anyone else been affected the same way? Is this par for the course with MS or is it just me being super sensitive? Thanks x
Well Curlie, what you’re writing is similar to my story. Diagnosed rrms May 2015, in a weekend! As in three episodes of paralysis in four days, ambulance to A&E Saturday morning, diagnosed the ward Monday morning. I was just about coming to terms with having ms, when my Neuro told me two weeks ago I have ppms. Only confirmed what I’ve already suspected. I went from using a crutch in September to needing a wheelchair by March. It was like being diagnosed all over again. Thankfully I haven’t memory problems, but I do find a wave of low moods washing over me, out of the blue. Mood swings too, don’t make me very nice to live with. I’m still on Tecfidera but don’t put it down to that. I think it’s just shitty ms, and/or grieving for what I’ve lost. The person I used to be. This week I’ve been particularly tearful for no reason I can think of. Tomorrow is another day I guess.
hi curlie
you haven’t been diagnosed for long.
what you are feeling is absolutely normal, so give yourself a break.
that busy workplace environment with people asking you stuff all the time - i named it sensory overload.
shops at christmas are another example.
maybe you could ask your work colleagues to speak one at a time.
good luck
carole x
Thanks for your comments ladies. Reading about your experiences Poppy, it sounds as if your MS is currently much more aggressive than mine as I’m still physically in decent condition (for an old bird). 20th me it’s mainly a constant weakness and tingling in my legs and feet as well as some swallowing/choking issues every now and again. You do seem to have had a very quick progression of symptoms so far, maybe this will plateau now? I too was on Tecfidera but it gave me horrendous indigestion (which still flares up occasionally) plus the consultant said it was ineffective against Progressive anyway so I kicked it to the kerb. About my workplace Carole, I work in a shop selling Clarks shoes and the summer holiday is our Christmas equivalent. Mostly the staff are cool with me, it’s the sheer pace of trying to keep up with everything and when I get halfway through some price changes for example there’ll be a family with 3 kiddies wanting to be measured at the same point as a delivery comes in as well as an assistant manager (who was def a slave driver in a former life) on my case about stock that hasn’t been stacked away yet. The staff levels have dropped there and my abilities are less than they were so my stress levels are on the up 
Curlie,
as a techie type bloke, I want to offer solutions but frustratingly I have learned this is not always possible. However I have learned that when I start to get stressed it is possible to choose a slightly different response, I tell myself “STOP !” , breathe deeply for 2 or 3 breaths. The interruption in my usual stressful reflex is short but enough for me to establish control.
Feeling tearful and overwhelmed is completely reasonable and normal - just not very helpful. I can not “switch it off” but I can sometimes suppress or replace it with something else.
This may or may not be of use, but I wish you all the best.
Mick
Hi Curlie
Your situation sounds similar to mine. I was diagnosed 3 years ago with RRMS when I developed optic neuritis and then several relapses/worsening of symptoms. I take Rebif but not sure how much this is helping now I’ve just finished a course of steroids so feeling pretty rough.
I too can’t seem to cope with work in the same way as I used to with brain fog and not being able to think quickly if put on the spot. I work in a busy office where we have been short staffed for about 6 months on top of this we have just had it confirmed that one of our team of 4 will be redeployed. We have all been put at risk and have to reapply for our jobs!!
After months of feeling as you describe tearful and overwhelmed I think this latest news from work has tipped me over edge and after a long chat with the GP I am signed off work My employer has referred me to occupational health to ‘support’ me so I’ll see what happens for the moment I am trying not to beat myself up and feel guilty for not being there
could you speak to your employer and see what support you I know nothing about employment law but I am sure they do have some responsibilities under the the Disability Discrimination Act
Something I have found really useful is an app I have downloaded for free onto my phone called ‘Calm’ and talks you through mindfulness and relaxation techniques
Be kind to yourself - you haven’t been diagnosed long and what a lot to take in
Kind regards Catherine
Hi Curlie
Recently I saw a neuro-psychologist. She did a whole spectrum of tests on me and ended up basically saying that what I have is typical of MSers generally.
She thought there was no real memory issue, whereas I think there is. I can’t remember the plot of a book I read last year for example (and this is true of the vast majority of the books I read, and I’ve spent my whole life reading!) And watching a series on TV can be quite difficult, unless it’s really easy to follow, I lose the plot from one week to the next. Even if I record a series and watch it one episode per day, I find I can’t remember who is who and what went on the day before!
What the psychologist did think is that there is a definite slowing of the ability to process information. And this is the thing that she said is typical of people with MS. It means that we have to concentrate more on a given task. There is no more multi-tasking for me. Because I am more physically disabled, I can’t even walk and have a conversation simultaneously. (I walk about 5 metres a few times a day using FES and a walker.)
It makes it harder to follow the plot of a TV series say, or to follow conversations in a group setting. Even eating takes concentration as if I try to talk as well as eat, I’m liable to choke. The other day, I had some friends visiting and needed to take a fairly important phone call whilst in the kitchen I had to ask the person to hold whilst I asked for the radio to be turned off and the coffee machine (a noisy one) to have stopped. Two minutes into the phone conversation, I again had to ask the caller to hold on, while I asked everyone to leave the room because there was just too much background noise. I could then follow the conversation properly.
I can imagine that doing the job you do having similar difficulties with processing of information would be a nightmare as in a shop there are always people, noise and several things happening simultaneously.
What you might need to do is to talk to your employer about some ways that you can be helped to do your job. (If that is, you are ‘out’ as having MS at work!) Even things like turning down any music that you might have on in the shop, or assigning you some slightly easier jobs when the shop is particularly busy; perhaps like splitting the customer service part of the job with the finding of the shoes in the stockroom part might help. Or any other ways you could be helped to cut down on the number of simultaneous processes.
At home, equally, it’s a matter of organising your life in such a way that you’re not trying to do too much at once. Prioritise your life, do one job and finish it (even if you are managing fatigue by splitting jobs into small chunks). Once you’ve finished what you’re doing, then move on to the next. Take your time with things and you may find your brain catches up with you and you’re more able to deal with things.
Hopefully some of this will help. If it does become a real problem, ask your neurologist to refer you to a neuro-psychologist to have your cognitive function tested.
Sue
Hi Curlie
I was diagnosed with MS 25 years ago, I’m part of the 20% of people who somehow manage to live with the condition, having said that I’ve started to have more noticeable problems. Two years ago I had a serious relapse and since then I’ve taken the illness more seriously, I’m not on any medication (through my on choice) but I do take all the supplements suggested on the NHS website. I also take ‘Catuba Bark’ for Pain, ‘Lipoic Acid’ to help with scaring on the brain and to help reduce attacks and recently I have started to take ‘Hemp Oil’ - you’ll need to google this one as the information on Hemp Oil is astounding.
I work 4 days a week in a busy office and suffer memory loss - I try to manage this by writing everything down, and dealing with one job at a time. I also suffer with choking/swallowing problems, again its all about cutting out types of food (thick pizza base, thick cut chips etc)
Hope this helps but seriously check out the Hemp Oil!
Daffodil