Forum

Big decisions this week.

I’ve had a really rough time with my MS since August. Moving into a part finished house in the middle of nowhere with a baby probably not the best thing for the condition. I’ve lurched from one thing to the next, constantly in that fatigued fog, loss of balance, sensation in hands and feet and tongue. Oral steroids prescribed by my doctor have been useless. I’ve just moved to a new consultant and had MRI and bone scan, got a letter to say that the disease is active at the minute and they don’t really want to give me any more steroids as my bones are a bit on the thin side so can I go in for an appointment this week to discuss Tysarbri (tried all the DMT’s in the past and not got on with them that well, have been managing with just steroids). Think its inevitable but I’m scared of the side effects of the Tysabri and leaving my OH to deal with 4 children on his own!

In the mean time I have to go to a meeting with my boss as I’ve been signed off sick since the end of my mat leave in October due to this ongoing relapse, he has documentary evidence from occupational health to say I’m not fit to work, but wants to talk about getting me back in some way. I need some time and a miracle to get me up and running again. Making my own bed involves so much effort I often have to climb back into it afterwards.

Oh dear, I really can imagine how very difficult life is with actvie MS, plus having a new baby and other children to look after. then you have a job to retun to as well…phew…that would floor the strongest folk, i`m sure.

Do you think you could reduce your working hours, or even give work a break until the baby is older?

I know money will be an issue if you dont work, but it sounds like somethings got to give.

I do hope you can find some relief from your pains too.

luv Pollx

Sounds like you have a lot on your plate. Re Tysabri - it hasn’t worked for me but that is not the point - I would thinkg carefully before you say no as it may be the best option you have. Yes there is a small - very small - risk of developing somthing with devastating consequences (ie PML) but it is a very very small risk and is a lot smaller than the risk attached to lots of day to day activities. Given my time again, I would still opt for it - there will be plenty of people who are able to post to testify for its efficacy for them. Re the meeting with your boss, yes I can see this comes at a difficult time for you - however try and see something positive in this. Lots of bosses might not want to know - sounds like your boss is really keen to have you back and that must be a complement!

We really can not afford for me not to work in many ways. My OH left the army last january and is working on a day to day basis at the minute (back to the army very shortly but back to the bottom of the food chain) so we are managing on my pay and child tax credits for every day living. OH;s money is helping to to pay off some of the debts we accrued when he couldn’t get work (over a year). Also if I continue not working I will lose my registration as a nurse and I don’t honestly know if I could manage the time and the placements involved in return to work. I currently work in outpatients and only 2 days a week. The trust won’t employ anyone for less than 2 days as its not financially viable for them to deal with all the admin, and mandatory training etc thats needed. It might sound like an easy ride, but the department is huge, I run nurse led clinics, its spread over a large area and no matter how often I say I need more breaks etc it doesn’t happen due to the busy nature of the clinic and I hate letting my colleagues down.

Weirdly I am actually starting to feel a bit more like my normal self in the last few days. Don’t know if its the fog lifting and I’m finally starting to get over this bad spell, or if its that I have resigned myself to getting treatment etc and its helped to lift some of the stress (although there is still massive amounts, trying to sell a house, being forced to get married to get a married quarter to solve all our debt issues, having to think about moving kids school, still no date for OH to restart army although has been told where he is off too, and thats just a few). I actually managed to do the house work this morning without having to stop after each job for a rest, although I’ve been floored since, only getting up to fetch the children from school. I don’t want to count my chickens but maybe this is the start of a good spell.