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I don't know what to do

I fear this may turn into a rambly rant so apologies in advance. I was diagnosed with RRMS 6 months ago. Have had one significant relapse since requiring steroids and started on rebif in September. I work full time, as a tutor in a college. My time is split between some class teaching (degree students, so in theory there are fewer classroom management issues!), one to one support with students and meetings, admin, listening to people moaning … I’ve had six weeks off sick in total since April so doing ok as far as the ‘figures’ go but I’m really struggling with fatigue at the minute. Work have in theory been good telling me to go home if I feel tired but in reality that just isn’t working. I’m leaving early before I get to the stage where I can’t actually drive myself home but I’m still a wreck and seem to be just going fro bed to work. I’ve no tolerance for anyone, my poor kids are getting the sharp end of my tongue far too often and I can feel myself withdrawing from everything. I know deep down that my quality of life would be much better if I reduced my hours formally at work but, since my husband left 18 months ago, I’ve been worried about bein he only earner. I don’t know what I’m asking really! Just feel I need someone to sort me out. I’m not good at looking after myself, clearly. Is there anything I can take for fatigue? How do I get over he guilt and the loss of my old self? Sorry to go on. Just needed to get that off my chest.

Oh just remembered one of the things I was going to ask - has anyone had depression as side effect of rebif? Wondering if there’s a bit of that going on

Hi sunflower, R was on Rebif. The only thing she did not suffer from while on it was depression but on saying that she was on 2 amiltriptalyne (?) for nerve pain and if memory serves this is an anti depressent. Can you not phone the local benefits office and find out if you reduce your hours due to ill health if you would be able to get tax credit or something similar to help with the short fall? You really need to take action while it is still in your control rather than have it thrust upon you cos you have taken too much out of yourself and can no longer work at all. Please take care of your health and look at your options. Hugs Lx

There are some treatments that can help fatigue. Amantadine, Vitamin B supplements and iron supplements are the 3 things I rely on. The Amantadine can make you feel a bit woozy at times though. Have you asked your GP / MS nurse for advice? Make sure you delegate as much as you can - if for example more admin support would help or a day working from home then I would imagine that these would be considered ti be reasonable adjustments. Take care. Hope things improve soon. xx

Hello Sunflower. You sound burnt out to me and in need of a long holiday. Anyway!! back to the real world…you need to sit down with a benefit advisor and decide if you can afford to reduce your hours. The hard fact is, if you carry on like this your going to make yourself too ill to work anyway. How your living now as a family is not good. Secondly go and see you gp and discuss your symptoms and see if there is any medication you could try that can help you. You mention about the loss of your old self and feelings of guilt…perhaps you should discuss some counselling with your doctor…cognitive behaviour therapy is good. I’ve got to think of something positive to end on!!! The good news is if you do the things I’ve suggested then things should improve…fingers and toes crossed PS; be proactive!!!

Hi Sunflower,

I can identify with your quandry as I am also a college tutor and main breadwinner and have recently had 5 weeks off due to a relapse. I’ve cut my hours to 0.9 and work from home for half a day each week. Work have been really supportive giving me a parking space close to work and trying to make sure my classes & one-to-one sessions are all on one floor. They’ve even allowed me to reduce class teaching in favour of one-to-one’s as I find this less tiring and less of a problem due to my poor balance. Have a chat with your boss, HR and your union rep and see if you can get them all to a meeting to discuss your needs. Ask to see Occupational Health too as they were supportive when I saw them and will make recommendations on your behalf. You may have MS but you haven’t lost your skills!

Good luck, hope it all works out for you. xx

Thanks everyone, you’ve given me lots of ideas. My sister texted me last night and asked how I was doing. So I made myself be honest and she’s driving down to see me today to help me get sorted out. I’m rubbish at asking for/accepting help so it’s a big deal for me to allow her to come. Just need to persuade myself now that it’s progress not regression! Stitch it sounds like your employers are really on the ball. Mine are sympathetic but they’ve left the ball in my court and I’m not sure yet what adjustments I need. 0.9 with half a day working from home sounds like it could work for me though. Are you finding it’s enough to just have that 1 day when you’re not there?

I’m not good at asking for/receiving help either Sunflower, I’ve always been far too independant for my own good but I want a bit of life outside of work and, to be honest, working 5 full days was leaving me fit for nothing. It took a while for me to work out what adjustments I needed but once I’d worked it out and discussed it with OH, everyone was really supportive. Have a think about what would make your working life easier for you and then ask to see OH. I’m sure you would find it useful.

One day makes a big difference to me, especially as I have a Friday at home which means a glorious 3 days to recover. PM me if you need any more info. xx

I have been working 4 days per week since diagnosis. Having a 3 day weekend definitely helps. Working all 4 together means that by wed/thurs I’m exhausted but by Sunday I feel half human again. I now unfortunately have to reduce back to 3 days as I’m not doing so good but hope to go back to 4 days in the new year… There is life outside work and if we waste all out energy on work there is none left for the really important things in life like family and friends. Don’t get me wrong-work is very important to me and I love my job but MS takes so much from us we need to find a balance. I’m also bad for asking for help… And rarely give up!!

I will arrange to see OH next week. My manager was supposed to arrange a referral but I’ve not heard anything yet so will chase it up. I will ring my ms nurse on Monday too and ask about amantadine. I think the key is to be proactive as Blossom said! I’m far too good at just letting things wash over me but I think that’s not going to work any more (not that it was working particularly well anyway!). I need to get some advice about agreeing finances with ex as well. My sister gently pointed out that my future earnings potential is now going to be a lot less than it might have been and certainly a lot less than my ex’s. Just don’t have the energy to sort it out :frowning:

I have been taking 1000 IU Vit D3 for 3 years and Pregabalin for the last 14 months. The result has been an improvement in my concentration levels, much less fatigue and fewer memory problems.

You need to work out what is best for you but having a family to care for is added pressure. I hope the MS nurse and other professionals come up with the right mix to help you have a better more positive life.

Cheers

Moira

Now you are being proactive sunflower Moira as just given you some good advice about medication which could be really helpful in regards to energy levels. Once you start organising and getting the right help and support things will slot in to place. yes!! you may have less money but this too can be managed with a bit of forward planning. Onwards and upwards. Noreen xxx

If you are lucky enough to be in an occupation that offers so much support, then you must take it if you want to stay in employment for the far future. These occupations are very far and between. good luck.

I was taking 5000 IU vit d3 but my gp told me off! Said the dose was too high and could cause kidney probs but I’ve read a lot of people who are taking it so I think I’ll go back on it. Been taking high dose vit b3. Not heard of pregabln so will look into that too. Thanks so much everyone, it helps to know other people know what I’m talking about xx