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I am not myself anymore.

I have been on holiday for the past 2 weeks with my 8 yr old daughter, my partner and his 2 boys which was brilliant, hardly had any episodes or none that were noticeable. However, I am back at work now and my symptoms are stronger and more noticeable than ever. Which is starting to freak me out :frowning: Colleagues have noticed my speach is slurred, struggling to say what I want to say, I can’t type or write properly and have seen me looking spaced out. Forgetting what I am saying or losing track. I occasionally walk funny, my stomach is churning. It is more noticed now as my close friend at work has said she can see me struggling with it all. This is not good when I work in customer services and I am slurring to customers. In honesty she is right, I am struggling!! I could burst into tears and go home, I am wondering how professional I seem, questioning myself and my abilities??? My partner this morning when we were talking about it, has said he is worried for me as he too has noticed it more. I am trying to keep a brave front on and try to carry on as normal when infact in honesty, I am scared witless. I don’t see my specialist until 2 weeks, then I have no idea what they are going to say or do. It has scared me today, as the episodes are coming back with a vengeance and being more noticeable to colleagues at work. Close colleagues/friends know about MS but I have not made it known to my employers as I have not had a confirmed diagnosis. I know my GP has said she is most certain that I have MS and since I had my referral I have not been back to see her. I don’t know whether I should, I don’t think there is anything she can do until I have seen the specialist.

Feeling a bit out of sorts today and most certainly not myself, feel like my body has been invaded (if that makes sense) I am sure I am not the only person and any advise how to cope would be really appreciated. I didn’t expect things to get worse this quickly, thought it would be over a period of time. Bit shocked really.

Hi Arti, that must have been a bit of a mission - on holiday with the. kids, I’m not surprised your knackered. Possibly the work routine will get you firing on all cylinders again thats what kept me going even though I was in a physicaly demanding job. I did that for around four years. Dont let hem sack you on perfomance issues if you have a good employer you should be able to tell them an they legally obligated to make changes. Just make sure you know what your rights are. There loads of people here can help you wih that one. A trip to your gp may be a.good idea she may be of help and keep her in the loop. Good Luck with that ! Frank.

Hi Arti,

Stress (and the temperature at the moment) can probably account for the exacerbation of some of your symptoms. The not knowing what to expect, either at your appt or what the outcome will be is - for most of us - very frightening. So take one step (and day) at a time. For now try to take heart in the fact that you’ll soon be seeing a neuro and at the very least the ball has now started rolling.

In terms of your work issues, don’t do anything rash. Do not leave your job. As Frank has pointed out, your employer is legally bound to make ‘reasonable adjustments’ to help keep you in your job but of course to do this they do need to know what’s going on first.

But before you do that have a look at the link below first, find out exactly where you stand before committing yourself to telling your employer.

http://www.mssociety.org.uk/ms-support/practical-and-financial-help/work-and-money/employment

Please don’t ‘doubt’ your abilities - you’re exactly the same person that you were before with exactly the same skills, it’s just that right now you have an immense amount going on and this coupled with your symptoms and everything else is taking it’s toll.

I’m forever finding ways of adapting how I do things at work and make copius amount of notes to remind me of things - use whatever you can to help yourself. It might also be useful to you to have a look at the ‘stayingsmart’ website (MS Trust) as it has tips and ideas on things like memory.

In the meantime look after you

Hope that helps

Debbie xx

Hi, I wonder if it is the exertion (albeit it a good one) of the holiday and then straight back to work are all a bit much for your tired body. Maybe you could do with some sick leave…the kids are still off school, so perhaps you wouldn`t get the rest you could do with right now, eh? if you did go on sick leave, is there anyone who could take the kids off your hands for a cuople of hours each day, so you can rest up?

luv Pollx

Thank you Frank, Debbie and Poll, you have given me some good advise that I really appreciate.

I am tired. I just put this down to being back at work again. My daughter is staying with her nan’s this week, it’s just my partner and I at home, until tomorrow. I didn’t want to take time out of work because I’ve only just come back from holiday, it’s not that I am ill…ill if you get what I mean. My GP offered me time out at the begining of the diagnosis process but I declined and muddled through, Today, is the worst day I have been with it being more noticeable to others. Maybe, I am just having a bad day of it and feeling a bit emotional. I do have alot going on in my life at the moment so perhaps this is not helping either. I will try to get in to my GP.

Thank you all again

Stella x

Hi Stella,

You are so brave in working, well done.I have had no dx as yet, however I do have all the symptoms.Been off work 9mths, my job is a nursery nurse working 3days a week 9 till 6 looking after 28 two-year olds…Very physical and mentally tiring job, and I cant do it no more.

I feel guilty,but find just doing small jobs were me out!!!

Good Luck Stella

Jan x

Hi Jan,

I’m also waiting on confirmed dx and at first I think I was in a bit of denial but as it goes on and it’s not going away, reality has hit home. I think you have to do what is best for you and your coping mechanism. Mine is distraction, my job can be mentally tiring and stressful but I enjoy what I do and the colleagues I work with. I do find in the evenings I feel very tired and I know my partner has noticed that as soon as I hit the pillow, I am out like a light.

I think Debbie is right and I am re-thinking my ways…look after you.

Stella x

I know exactly what you mean Stella - distraction helps. I think of my job in the same way you think of yours and as stressful and frenetic as it is, I still love it. Granted, I can’t race around like I used too but I’m lucky that I’m in a position to be able to juggle my workload and have colleagues & bosses who go with my flow as it were! This ‘pacing’ business does take time to get used too - I battle with it even now.

Jan, I don’t think there are many that could handle 28 two year olds doing ninety at the best of times…I know I couldn’t! It’s so hard isn’t it - not being able to do the things that we’ve always been able to do, and then on top of that the guilty feeling then kicks in ((hugs)) to you Jan.

Debbie xx

Hi arti73

Sorry to hear you are not feeling well. I certainly think you need to go back to your GP - mine has been amazing and I have been there almost every week (and sometimes twice!) for the past 5 months!!

My symptoms seemed to hit me like a tonne of bricks. Completely out of the blue I got Optic Neuritis and then jerking/tremors, then back spasms etc etc. All this since beginning of April.

Your GP can help you with symptom control and pain killers etc., and can sign you off for a few weeks till you pick up again… I have been off work since April now, and I am still not well enough to go back. Am living on the pittance Emp Support Allowance gives me, which is tough for myself and my 17 yr old daughter.

The slurring is horrible isnt it. I had a woman behind me in the supermarket who called me an old lush as i was slurring, my hands were shaking and i had forgotten my pin number. That was my lowest point I think. Im getting used to feeling rubbish most days now, but the ON seems to have gone and at least I can drive again. I felt very lonely being stuck at home feeling ill all day for months.

Please go back to your GP and I really hope you start feeling ok again very soon.

Paula xx

Paula, I really feel for you - my memory is not as good as it use to be. People can be so hurtful to others especially as your feeling low at that point. It’s awful the slurring, you know what you want to say but the words don’t come out like they should and I certainly get embarrassed and frustrated. I really hope you start to feel better than you have been.

Well, today is another day and so far this morning I am feeling slightly better than yesterday, no slurring so far, no leg or hand - lack of coordination and the best thing the weird wave feeling that comes over me when things are going to start has not made a presence. :slight_smile:

From the advice I have received, I’m making an appt to see my GP. Your all right, she needs to be kept in the loop and may be she’ll be able to help me.

Thank you all

Stella xx

Hey Stella

The slurring is pretty bad isnt it. I also tend to start sentences and forget half way through what I was saying. Thats horrible. I also say the wrong words for things… I was talking to my niece and asked her to put the light in the fridge. When she questioned me I just kept repeating the wrong word… until she (being 8 years old) said “what you really mean is the milk in the fridge Auntie Paula, so I’ve already done that for you”. Bless her. She also holds my hand tight when we are out to ‘help keep me up’ - I had a fall when she was with me.

I have been having a good few days now, so my symptoms arent so bad… tho I still jerk and twitch all the time and suffer from extreme fatigue. I am really happy to hear you are feeling ok today too.

Let us know what your GP says, I think you will find that he/she will be helpful (if they are any good!).

P xx

Hi Stella Feel for you - I’m exactly where you are with work, but havent got slurring fortunately. I’ve found the heat has made things worse for me recently so maybe you’re in a transient bad period. Try and think of yourself more, and not bust a gut as much in work - I’ve just done a poets myself! Which is very unlike me. I know that stress causes flare ups as I can be in a situation where some tension arises, and immediately my vision can go wobbly iny left eye. This whole MS thing is difficult - I see it a bit in terms of getting physically older just a bit earlier than normal. I am trying to counter this by cramming in loads of activities and personal challenges while I can - like swimming a mile in Windermere next weekend. Sorry if I’ve gone off at a tangent, And my very best wishes. Mr S

I was having a really good day Friday but this weekend has been very trying. I am starting to agree with what most seem to think, that it is stress that causes alot of my symptons and exacetbation. I think it is all the personal stress I am now under along with the anxiety and stress of waiting for a confirmed diagnosis and what the future holds. I cannot deal with all that is going on at the moment, I use to be a strong person but not at the moment. At least I have only one more week to go before I see the specialist.

Hey-ho, tomorrow is another day.

Stella x

You are still a strong person Stella but things like this on top of our existing worries and problems just makes things worse. You will get there…I know it’s easy to say but try not to overload yourself. Deal with one thing at a time and leave everything that’s not so important for another time - when you’re up to it.

(((hugs)))

Debbie xx

I kinda know how you feel, I have lost track of the “real me” as it were, i feel like a different person , or more to the point a couple of different people depending on the situation!

xx

Thanks for the sound advise again Debbie, at the moment I think it is definitely easier said than done though. A lot is going on all at once and I already feel I’m on a roller coaster without it having extra dips and loops in it.

I can understand what Juleslovesmusic has said, I certainly don’t feel like me. Piggy in the middle seems more appropriate at the moment.

I need to face what is going on, when deep down all I want to do is hide and hope everything will sort its self out. I wish.

Stella xx

Hi Stella,

I’ve been feeling exactly the same way for some time. Like my life has been turned completely upside down - spinning out of control

I’ve lost all my confidence - what little I had anyway - but part of me also feels it’s time to move on. Now I’m left pondering over the ‘whats’ and ‘hows’.

I’m lucky in that I do have a dx - unlike so many - but like you say it’s not just the health issues it’s everything else on top of it as well.

Wish I had the answer…

Debbie xx