MS and Work

ElleEm

I was diagnosed with MS a few months ago, and have been off work since due to the severe symptoms I was having.
It seems to be getting under control now with medication, but I still have a few things going on, mainly with my eyesight and energy levels. My sleep pattern is off as well, so I don't get more than about 6 hrs a night. I feel tired all the time.
I'm trying change my lifestyle through food and exercise too.

The reason for starting this thread is I'm wondering how long it took other MS sufferers to go back to work. Also, did you go back while suffering with other symtoms or did you wait til most of the stuff was gone?

I work in a highly stressed environment where I have to be physically on the ball, moving around a lot etc. I wouldn't feel comfortable going back to work while my eyesight is a bit blurry/ prominent blind spot etc. I'm just wondering how other people coped? I'm worried about being a "baby", and not just sucking it up and getting back into work. But I am also very conscious about being fully able to do my job as I work with vulnerable people. Head is wrecked... advice would be appreciated!!

Thanks.

fergal.b

Hi ElleEm, I am sorry to hear your news I know it must be very hard for you, I am not sure anyone can give you any answers as MS affects everyone in different ways and so can the medication.
By your description of the job being highly stressed and physical it may not be the best thing for you or any MS sufferers maybe you could branch off to something less demanding, I am not saying you cant do the job, just think a bit more about looking after yourself and when you are ready you will know what to do.
You have just had a big sock to the system and it may take awhile to come to terms with it so try not to put yourself under pressure and take your time only you can come up with the right answers to suit you.
I wish you all the best in what ever you do,"look after number one" and keep:)

ElleEm

Thanks for that Fergal. I've had a few people tell me that I probably won't be able to return to my job as it's very long hours as well.
I will start looking for a new job soon but I would like to return to my current job for a while too, just to see how I'll cope.
I don't know how accommodating my boss will be regarding changing my hours or if that's even possible, so I'm stressing a bit (I know stressing is against the rules with MS!).
I just feel a bit stuck, I'm not suffering the way I was, but I'm not fully better either. I just don't want to get lazy and complacent, I wanna start getting back to the way I was before MS, or as close to it as I can.
I'm not very good at looking after myself, I let life get in the way- so that's something I have to work on.

Thanks again for the support!

FluffyCat

I was off work too for a few months when I was first dx with MS but decided to quit and go back to college instead!! Studing pharmacy now and havent had many problems.
One thing I would say is that the first year with MS is the hardest but things settle then. I didnt believe that when I was told but looking back its very true!!
For yourself, if you could take say six months off work, it would really help in the long term. It would give you time to get your head around the whole MS thing.

byhookorbycrook

Fatigue can be a problem,you need to learn how to manage it .What meds are you on? Get plenty Vit B and good quality omega oils.For sleep I found the natural sleep stuff -with valerian etc. helped.I presume you are relapsing/remitting?
I am now on a painkiller that knocks me out for a few hours,so that's no longer an issue. I used to go to bed after coming in from work, now I try like hell to stay awake. Otherwise, you'll be hopping off the walls late at night and wrecked the next day.
Learn to be selfish, if you feel something is too much,say so. Put yourself first from now on.The good news is that your initial symptoms were sensory (like eyesight) and that can indicate a better prognosis, long term.
I take it by your user name that you are female?Another plus factor for a better long-term course.
PM if you like, I was diagnosed in 2001 and am still in full-time work.

LegacyUser

Vitamin D3 in high amounts has helped some people. I don't have MS, so I don't know a lot of the details, but if you Google, you'll come up on quite a bit of info. Some MS sufferers in Canada have had good results. They have also followed a certain diet.

Recently a procedure called by the unfortunate nickname "new liberation treatment " addresses what is called Chronic cerebro-spinal venous insufficiency (CCSVI).
Info on Wikipedia.

Canada has a highly disproportionate number of people with MS, as do some Scandinavian countries, I believe. So deficiency of Vitamin D3 does seem an obvious contributor. The Canadian MS groups are pretty active.

I hope your employer is helpful. According to the tested interpretations of Employment Equality Acts 1998 and 2004, the Equal Status Act 2000 to 2004 and the Disability Act 2005, you would be considered as having a disability, and therefore entitled to request "reasonable accommodation" and "appropriate measures" to be provided/taken to assist you in being fully capable of doing your job. You might look into that. You might not consider yourself "disabled," but the Equality Tribunal, etc defines it very broadly.

Good luck.

byhookorbycrook

Ms increases the further you move from the equator, so there is a vit D/sunshine element to the disease, it's thought. CCSIV is very controversial and mainly unproved at present. I am on Tysabri infusions. Once a month I go to hospital for it. Possibly fatal side effects are a common (ie more than one in 5,000) are the main problem. However, I had two relapses in three months on Avonex, since Tysabri started nearly 3 yrs ago, I am relapse free.

loumalone

Hi ElleEm,

Don't write yourself off so soon hon! It sounds like you've presented first with optic neuritis? and if it's only been a couple of months then there's no reason to think you're not going to recover completely from this relapse.
If you can just have time off to recover then with proper management long term it might not be as devastating as you imagine right now.

What treatment are you getting at moment? Apart from the steroids they can give you to treat whatever symptom you're having at the moment it's really worth making sure you have a good neurological team behind you and get started on Disease Modifying Drugs long term.

When i started out 2 yrs ago i wasn't encouraged hard enough by my doctor to deal with it and he sort of made it sound a massive step to be injecting DMDs and that i probably didn't need to. But now down the line, a referral to the excellent neuro team i have now, and loads of googling! i know that i should have started on the meds much sooner cause they might have stopped a couple of symptoms i've had in the meantime.

And injecting my drugs turned out to be a piece of cake!:)

byhookorbycrook

Lou, do you mind me asking which injection you are on?

ElleEm

Thanks for the replies, everyone.

loumalone wrote: »

What treatment are you getting at moment? Apart from the steroids they can give you to treat whatever symptom you're having at the moment it's really worth making sure you have a good neurological team behind you and get started on Disease Modifying Drugs long term.

I've been on Copaxone since the start of Nov, which was only about three weeks after my first few symptoms and diagnosis. They didn't even have to wait for my lumbar puncture results before putting me on treatment because my symptoms were so severe.

My consultant (Prof. Hardiman in Beaumont Hospital, Dublin) won't give me steroids as she feels that the longterm effects of overusage are too severe. I was given an IV of steroids after my first symptom left me in hospital.

I think my job will be accommodating when I return, and I'm supported by my GP regarding time off now which is good. I'm just worried that I may need to suck it up and go back even if I don't feel 100%, because who knows if how I'm feeling now is my new 100% with MS!?!

On a side note, do those of you who have MS get the flu/ Swine Flu vaccination? I only thought of it the other day.. do we count as the "at risk group"?

byhookorbycrook

Yes, MS is an "at risk " grop...the joys The sleep thing needs to be sorted,if you are tired all the time ,you can't go on.

My symptoms for all of my relapses were leg/s dragging behind me,took a while to come right,so couldn't drive etc, but went back before I was fully "right,not a great idea when you are a primary teacher. I limp slightly now when I get tired but otherwise do ok.

Injections are a pain-literally, but hopefully it will slow things down for you.

ElleEm

I got the flu injection the other day- I wasn't expecting to have to pay though, because of the MS. Should it not be covered by the LTI?

Also, can anyone tell me anything about driving with MS? Who do I have to tell, insurance company etc.? I know I have to get a letter from my doctor to say I can drive (when I can actually get behind the wheel again!). Did anyone who had to do this notice a big hike in their insurance?

byhookorbycrook

Yes you need to tell the insurance company asap, otherwise if there was any kind of claim,they could try to weasel out of it. I get a letter from my neuro each year and send it in, even though they don't ask for it. No change in insurance, think it's illegal if they do.

LTI book only covers meds approved by the HSE as needed for your MS,I don't think a vaccination would qualify.