Views on working and careers please

Hi all,

Sorry, my 2nd post of the day…mind is doing overtime at the moment and I’ve spent much of my Friday evening (rock on!) reading (and finding comfort in) posts in this forum.

I think it’s fair to say, I’m struggling a little. The physical struggles I can deal with, I think (see previous post), but the old ‘crazy mind/thoughts’ are starting to creep in and that’s whats starting to make me feel a little lost and confused.

I’m wondering what others view is on work. I currently work in a rather stressful and demanding job and have a long daily commute - my Dr’s have advised I make some ‘major life style changes’ - I’m only 26 and don’t and won’t accept I cannot work - but I wondered what others advice would be on work - and if others are on a period of sick leave throughout their diagnosis stage?

Any help greatly appreciated

x

Hi Nats,

You’ve had some great advice in your previous post from Karen but I will share a little of my story in terms of sickness and work.

I had what appeared to be a stroke but wasn’t in early March…it was diagnosed Transverse Myelitis ™…unbeknown to me there is a strong link between TM and MS.

I lost use of one side of my body practically, lots of odd sensations like numbness burning etc and was in pain like I have never known. At times I thought it would never end but I slowly started to recover in June. Then in July I think I had a “relapse” and am awaiting the results of fresh MRI’s…suspecting MS

I manage hundreds of people and a budget of millions but I have remained off work the entire time sick, I am now regaining strength and was hoping to start back on a phased return next month but my GP wants me to wait until I see the neuro again.

All I can say is that since the onset of this illness I have also lost the ability to handle stress and articulate myself.

At times when I am fatigued I can’t even digest a passage of information.

I have not given up the hope of returning in some capacity, but the only good thing I have done by remaining out of work is I have not discredited myself professionally as I was quite new to the company and people new of my reputation but hadn’t really got to know me. I do some crazy stuff right now like put the mail in the fridge…we laugh at home but I would be embarasssed…I also think I need to get to grips with this before I can re-launch myself back into my work life.

I was going to say work persona but I have the feeling MS will intrude wherever it wishes

I think what has happened to you is a tremendous shock and it may be worth taking some time out of work to understand the possible diagnosis and as Karen advised I would seek help with any symptoms you are suffering with from you GP in the meantime.

Neurophysio’s are magicians and I have come on tremendous since getting physio so I can recommend that you try and get a referral if you still haev weakness.

Hi there,

Thank you for your post - it is much appreciated.

Firstly, I am sorry for what you have gone through.

I too, manage a large amount of people and a budget of millions (our similarities are already scarily close!) and due to the uncertainity of whether or not it was a TIA or not, I was signed off work. I did return and 3 weeks later, boom!, back in hospital after the episode in September. I have been signed off work since being discharged, as too, my GP wants to wait until I see my neuro again in Oct before confirming I can go back. Like you, I am slightly concerned by actions I have been doing of late - particiulary the words which just appear in sentences…it’s a conversation killer! But I also can’t help feeling if I could just get back to work and ‘normal’ things will get better…

I suppose, with this all being completely new and relatively out of the blue for me, I just wanted to understand what others were going through. And maybe a little reassurance…

Thanks again - you and Karen are right with your advice.

Good luck and please keep in touch x

Hi Nats,

If you are just looking for different people’s experiences, mine’s a bit of a mixed bag.

I was diagnosed two years ago, at a lot older than you (44). I never had any time off work due to MS (other than the inevitable hospital appointments) either during or after diagnosis. But this was made easier by the fact I already worked from home anyway.

I’m sure I would not have quit voluntarily, but I was beginning to struggle. Last appraisal didn’t go too well, even though the boss knew I was ill. I think, in part, because I was never off sick, and didn’t keep bleating on about it, people forgot there was a problem. I don’t have any outward signs, like a stick or wheelchair, so there wasn’t really anything to remind anyone I wasn’t fine.

Then, a couple of months ago, I was made redundant for reasons unconnected with my health. My company screwed up on a big contract (it’s been in the news, but it wasn’t G4S), and had to shed more than 1200 people.

The thing is, now it’s happened, I’m questioning whether it wasn’t a mixed blessing, and whether I’ll ever return to work. I’m already missing the money, as I don’t have a second income from a partner, so am dependant entirely on my redundancy package, and what savings and investments I already had.

I’m not missing the work side at all, however. I’m not sure I’d realised just how much it was dragging me down, and how much the everyday petty politics and bureaucracy took their toll on me. And that was even though I didn’t work in a conventional office, and probably had to put up with a lot less of it than most people.

I’ve signed up for a couple of courses, with a view to perhaps doing freelance proofreading and editing from home. If I’m honest, I don’t think it’s ever going to make more than a bit of pin money (if that), and is hardly going to be a glittering new career. But it might be the most I can realistically commit to. At least I’d get to choose the amount and type of work I took on; I wouldn’t have to accept a contract I didn’t like the look of.

Is any of this “advice”? No, I don’t really think so. Just telling you how it’s been for me. I think, if fate hadn’t intervened, I’d probably have literally died in that job, or gone on 'til MS made it impossible, instead of just hard. I don’t know if I ever would have seen for myself when to stop.

Of course, 46 is a lot different to 26. If I’d been made redundant 20 years ago, but already ill, I probably wouldn’t have had the option of semi-retirement, or “downshifting” to something less demanding. It’s still a sacrifice now, but I’ve got more of a safety-net than I would have had back then.

It really just depends. I suppose, if I hadn’t been made redundant anyway, a compromise would have been to reduce my hours, and see how that worked out. But I was always rather reluctant to do that, because not only your pay reduces, but all other benefits in proportion, including holiday, pension contributions, and redundancy pay, should you ever become eligible. Which I did - so I’m thankful I hadn’t stepped down to a three-day week, otherwise I’d only have got 3/5 of my severance package, no matter how many years I’d worked full-time.

All things to consider…

Tina

Hi Nats, I have not been dx as yet had lots of problems with balance and other symptoms. I am 46 and worked as a nursery nurse up until last Nov, tried to go back in April, but I was unable to.

Fatigue is the worst part, and also spasms in my legs are driving me crazy. Listen to your body and try and rest because thats what you need to do.

Jan

Nats,

Tina makes a really good point about being glad that she never dropped to a 3 day week or she would have only got 3/5 of the redundancy package…hoping that you are full in sick entitlement?

It’s ok for someone to say make life style changes but these will impact on you quite probably financially, so I would take some time to heal and get strong and try not to make any big decisions yet.

I also agree with Tina (i’m 44 years old now) that as the months have dragged on I am finding pleasure in interests I had years ago before the career took over and I am starting yoga and managing to swim so it isn’t so torturous as it was when my life seemed to change almost overnight.

Remember, MS affects everybody differently so you might be able to get your head round this, start treatment and continue a busy career.

I guess I’m trying to say it’s early days. Jan is right when the fatigue hits I now give in, get under a blanket and wait for it to clear, so get plently of rest

Gillian