My symptoms have started to get worse over the last few days. I think it’s partly because I have been very stressed because I am looking for a job and I am anxious about whether I can cope with working full time etc. I have recently lost lots of confidence which is quite a new experience for me as I have always been a fairly confident person. I am on tysabri which has been keeping major relapses at bay but my symptoms which are always bubbling away (fatigue, cognitive problems, recent leg stiffness) have started to get worse. My legs are feeling weak and I just feel frightened. How am I going to get and hold down a job?
I want to try and carry on as normal (the new normal I found after disabling relapses) but I’m having to start facing up to the reality that I can’t do that…I guess I need to find another new normal, although the difficult thing with MS is that this seems to keep changing! I feel quite hopeless at the moment. I hope it is just a phase. Thanks for taking the time to read.
I’m afraid, I dont have any practical advice to offer you. Reading your post reminds me of my own situation. I just want to offer you support and friendship. Hopefully there will be another poster along soon to help. I too shall read there reply with interest.
just to add, I have just had the health visitor here to see my little boy and catch up with how I am doing. She offered me some counselling, which I have accepted - I have never done anything like this before in my life. I regard myself as a very capable person who can sort it out for herself - thank you very much (puts on a hoighty air!)
I have been having a rough old time at work - i feel really rushed into making decisions and telling people what i need regarding reasonable adjustments and I just can’t do it. Apart from having the money each month, work seems so very unimportant to me, I just want time to adjust for myself before other people start demanding that they need to help me (duty of care and reasonable adjustment policies - I feel like their demands are all lip service and they are ticking a corporate box)
I havent come to terms with my diagnosis yet, and I want some breathing space to make decisions for me, about me
I work to live - I don’t live to work.
However, before my diagnosis in August I have to say it was the other way round. Perhaps other people know me well enough and still think I am and will remain like that.
Your post is like so many others with this bloody disease!! I no just how you feel living with fear is hard!, I seem to over think things all the time i am a happy person and confident but there is always my over active mind doing over time. You will have ups and downs just hope there are not to many down for you!
Hello there, I know what you mean about finding the new normal for me.
I seem to have to do that every so often. Just recently I am in that quandry with needing to be hoisted, as the mobility worsens even further, Now I am having to find the funding as the council seem to think our income is good enough and have no interest in our outgoings.
But back to you…mm, if your symptoms etc are worsening, I don`t see just how anyone can expect you to work full time…at anything!
It takes unbelievable amounts of energy, stamina etc for us to just stay functioning at all, on our best days, eh?
I think you need to see a medical bod to examine you and write a report to the powers that be, so that the DWP will realise you are not capable of working full time now.
Is your GP a good listening one? I hope so. Maybe you could start with him/her, eh?
You hit the nail on the head,by saying, you need to find a new normal,having MS is an ongoing challange,and you have to do quite a lot of adapting, some make the mistake of trying to get back to normal, but for some thats not possible,the unpredictability is the worse thing in MS,i still find it hard, and i have had MS most of my adult life,you need to do what is right for you, and those closest to you,the stress you have been under will make your symptoms worse,so you need to destress as much as possible, and rest and eat healthily,and remember this bad time will pass,there will be many highs and lows,and you will find your own way of coping.
I can relate to your post in so may ways; The lack in confidence, worrying about work, feeling despondent…
At the end of the day I just keep telling myself that I still have the same skills and experiences that I had before MS came along but my limitations are very different now and it’s finding & perfecting those limitations which is so flippin’ hard. My priorities are very different too. I’ve always worked hard & put everything I have into my job and now I find that I can’t. Other things have taken over in the priority stakes too, like my health and living!
But I still have to work. I can’t afford not too.
There are always loads of little changes that you can make at work and at home that can help. Even the smallest of things can make a huge difference. But it’s definitely a steep learning curve and a continual one too.
Stress definitely makes me feel worse so I’ve no doubt at all that the stress of looking for a new job coupled with your recent loss of confidence and the constant worrying about everything isn’t helping. I’m very much the same.
Are you on any meds to help with the fatigue and stiffness and if you are do you think they’re helping?
As much as I love my job even I have to admit that there will come a time when I’ll have to look at other options but I think this also depends on whatever your occupation is too. Although I work in an office my job is very stressful and full on and I have a lot of responsibilities. I feel like I’m pedaling backwards a lot of the time nowadays.
Ultimately I don’t think it’s just a case of coming to terms with having MS - it’s everything else that comes with it and if you can get over some of those hurdles and find ways that work for you then you’re halfway there. Like most people (I think?) I’m still finding my way.
I really hope that something comes along for you, that in itself will be a confidence boost for you.
Good luck & let me know (if you want too) how you get on
Debbie xx
p.s. I’m also a fan of that saying ‘I work to live not live to work’!
Thanks for your replies and kind words. I just need to stay hopeful that I will have ups again. My symptoms are often quite invisible and some of them fluctuating. I’m not recieving any benefits and seem to be finding it hard to get help with filling in a DLA form. My local ms society branch referred me to a local disability organisation that help people with benefits applications. They have no experience with fluctuating conditions and I think they took one look at me and thought ‘she doesn’t need it’. I just feel like its a form of torture…I have this horrible condition but I can’t seem to get any support. Everytime I ring the MS society they just refer me to the publications but I feel that I’m at a stage where I need practical help. Hopefully I will get there in the end!
Hi Debbie - I have got amantidine for fatigue but I’v e found that it makes me feel even more spaced out and my cognitive troubles worse! Haven’t tried anything for stiffness yet although a fell mser at a group I went to on Saurday told me about tumeric…apperently half a teaspoon a few times a day helps! I really agree with what you say about it being more about coming to terms with everything else that goes with MS and that changes over times so is an ongoing journey I guess with ups and downs. I guess I’m struggling so much because I’ve never experienced such a bad emotional down as I am currently having but hopefully there will be light at the end of the tunnel and it will just be another learning curve. Feels like a lot of suffering but that’s life I guess! The work thing is tough but sounds like you’ve got a good approach to it. Thanks for your comment x
filling in a DLA form with fluctuating symptoms is a challenge but by no means unusual. I suggest that you join the Benefits and Work website (www.benefitsandwork.co.uk) it’s under £20.00 and will take you step by step through the DLA process.
My MS nurse has referred me to a fatigue management course. I can’t tell you about it because I’ve not been yet but perhaps your area have something similar that might help you. I think that you may have to accept though that the “practical help” that you are looking for doesn’t actually exist. Reading between the lines I suspect that you are trying to find something that will let you carry on like before. It’s the holy grail of MS and doesn’t actually exist. My shed is full of walking aids - sticks, crutches, walkers etc. I was convinced that all I needed was the perect aid, the perfect pair of shoes and I would be able to walk again. Nope! You talk about “the new normal” but I have a feeling in my heart that you need to go further down this road and accept that “new” is further from “normal” than you want to admit.
I don’t mean to sound harsh but I’ve been there sweetie.
It might be worth a try for you to reserve a certain amount of time for yourself every day and try to stick to it, to allow yourself to relax and let your body catch up with your change in circumstances. A new job is quite a mountain too climb, even for the fittest of people.
I think you have put your finger on it when you say that you, ‘… need to find another new normal, although the difficult thing with MS is that this seems to keep changing!’ I completely agree that this feature of MS is a total bastard, and it is a hard job to deal with it.
It is possible to come to terms on a day-by-day basis, and to squeeze the sweetness out of the moment. On a good day, that 's what I manage to do, but I’ve never been anywhere close to a blanket acceptance of the condition and what it might do to me in the future. At the moment, I think I’m winning if MS has not managed to spoil today. I don’t know whether that’s as good as it gets. Even if that is as good as it gets, that’s OK.
But that’s all very well if, like me these days, you can sit on your bottom doing nothing if you are having a bad day. It’s a different matter if you are trying to function in the workplace. Realistically, you need a good and supportive boss who understands the need for some flexibility. There are some out there. I hope very much that you find something to suit and that you and you become the valued employee of a good employer.
Hopeless feelings do pass - don’t despair. They are sometimes also the necessary growing pains of a new phase of coming to terms with having this blasted illness. If the low mood sticks around for too long though, you might need to take other action. Fingers crossed, it just blows over and you feel yourself regrouping. All I would say is, don’t try to look too far ahead. We all have enough to deal with here and now.
I’d definitely speak to either your nurse or neuro with regards to some meds for the stiffness - it could be just what you need. There are loads of meds available so if one doesn’t suit then ask to try another. Please don;t suffer in silence.
For fatigue there is also modafinil - which for me is a godsend - but like almost everything else with ms it doesn’t suit everyone. But perhaps worth asking about it.
Have you considered whether going part time for the time being is the way to go? That may not be viable I know - but if it is then I’d definitely consider it if I were you.
Good luck - email me anytime if you thinkg I can help you at all
Hi there. Sorry you’ve been having such a tough time, it does take a while to accept the diagnosis of MS. I was diagnosed with MS almost 3 years to the day and I had the same problem as you (and probably many others too)
I had a FANTASTIC job, earned great money (more than my husband) and got to travel the length and breadth of the country in a Company Car with healthcare, pension etc etc. The few years before my diagnosis, work got more and more tricky. I was having problems but I didnt understand at the time. It was only a few months after my daughter was born that I was diagnosed and at that point I had to decide whether I was going to put my family through me going back to work and not being able to cope with the job or worse, getting the sack because I couldnt do it anymore. Equally important, did I want to put MYSELF through that?? I took a very tough decision to give up a 16 year career and I’m so pleased I did. I knew I had changed and I wouldnt be able to go back to the way I had been before. So I havent worked for 3 years but have recently registered as self employed and have opened an ebay shop which offers me the flexibility of being able to work when I feel capable AND fitting it in with the kids, school drop off times, shopping, housework, cooking the dinner etc. I realised that I had to prioritise and that meant making a commitment to my family to stay as healthy as I could and not get myself into a very stressful situation. Apart from anything else, I’m far too tired to do much else anyway.
I hope that helps and wish you good luck, whatever decision you decide to take xx
Hi,I am new to this group,I’ve only just picked up the courage to join such a group,I now you situation it’s similar to mine,I feel on my own I have recently been having problems with my legs.I left a message with my nurse about it she said she would contact my consultant and that was over a week ago. My advice to you is not to wait like I have done. And I hope you get the answer’s you need.
Welcome, and well done for plucking up the courage!
However, presumably you didn’t realise you were replying to a discussion that was last active in 2011?
I suggest you begin a fresh discussion. You’re not limited only to replying to someone else - you can start a new one by clicking the blue “New Thread” box towards the to of the forum (just under the search box).
