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 Colleagues have noticed my speach is slurred, struggling to say what I want to say, I canāt 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 donāt 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 donāt know whether I should, I donāt 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 didnāt 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, Iām 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.
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 youāll soon be seeing a neuro and at the very least the ball has now started rolling.
In terms of your work issues, donāt do anything rash. Do not leave your job. As Frank has pointed out, your employer is legally bound to make āreasonable adjustmentsā to help keep you in your job but of course to do this they do need to know whatās 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.
Please donāt ādoubtā your abilities - youāre exactly the same person that you were before with exactly the same skills, itās just that right now you have an immense amount going on and this coupled with your symptoms and everything else is taking itās toll.
Iām 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 āstayingsmartā website (MS Trust) as it has tips and ideas on things like memory.
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 leaveā¦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?
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 nanās this week, itās just my partner and I at home, until tomorrow. I didnāt want to take time out of work because Iāve only just come back from holiday, itās not that I am illā¦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.
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 oldsā¦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!!!
Iām also waiting on confirmed dx and at first I think I was in a bit of denial but as it goes on and itās 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 waysā¦look after you.
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 canāt race around like I used too but Iām lucky that Iām in a position to be able to juggle my workload and have colleagues & bosses who go with my flow as it were! This āpacingā business does take time to get used too - I battle with it even now.
Jan, I donāt think there are many that could handle 28 two year olds doing ninety at the best of timesā¦I know I couldnāt! Itās so hard isnāt it - not being able to do the things that weāve always been able to do, and then on top of that the guilty feeling then kicks in ((hugs)) to you Jan.
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 againā¦ 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, 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. Itās awful the slurring, you know what you want to say but the words donāt 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.
From the advice I have received, Iām making an appt to see my GP. Your all right, she needs to be kept in the loop and may be sheāll be able to help me.
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 thingsā¦ 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 wordā¦ until she (being 8 years old) said āwhat you really mean is the milk in the fridge Auntie Paula, so Iāve already done that for youā. Bless her. She also holds my hand tight when we are out to āhelp keep me upā - I had a fall when she was with me.
I have been having a good few days now, so my symptoms arent so badā¦ 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!).
Hi Stella Feel for you - Iām exactly where you are with work, but havent got slurring fortunately. Iāve found the heat has made things worse for me recently so maybe youāre in a transient bad period. Try and think of yourself more, and not bust a gut as much in work - Iāve 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 Iāve 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.
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 thereā¦I know itās easy to say but try not to overload yourself. Deal with one thing at a time and leave everything thatās not so important for another time - when youāre up to it.
I kinda know how you feel, I have lost track of the āreal meā as it were, i feel like a different person , or more to the point a couple of different people depending on the situation!
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 Iām on a roller coaster without it having extra dips and loops in it.
I can understand what Juleslovesmusic has said, I certainly donāt 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.
Iāve been feeling exactly the same way for some time. Like my life has been turned completely upside down - spinning out of control
Iāve lost all my confidence - what little I had anyway - but part of me also feels itās time to move on. Now Iām left pondering over the āwhatsā and āhowsā.
Iām lucky in that I do have a dx - unlike so many - but like you say itās not just the health issues itās everything else on top of it as well.
Colleagues have noticed my speach is slurred, struggling to say what I want to say, I canāt 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 donāt 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 donāt know whether I should, I donāt think there is anything she can do until I have seen the specialist.