Thanks everyone, she is feeling a bit better, still can’t walk alone or move much as vertigo still there but not being sick and not feeling so poorly. I read something that describes what the symptoms of MS are and it says no one has all the symptoms but you may experience some of them. I went down the list going yeah, yeah, yeah. Think she had nearly them all and all at one time. It is so hard for her, she has no quality of life so got so much riding on Tysabri working. I have not gone to work this week as she can’t be left alone, am starting to wonder if maybe I should give it up as it’s not fair to be off work so often. Most of the time I have taken off I have done as Annual Leave but I must be about out of Annual Leave and if anything else happens I will have to go to doctor and get a sick line which does not sit comfortably with me as I am not sick. Although I only work 9 hours a week, it is a very good paying job and it pays to keep the wolf from the door. I don’t know what to do for the best, R needs me but without my income I don’t know how we would pay all the bills. L x
Hi pleased Rachael is feeling a bit better,do they know at work how ill shes been ? you could explain that for now you will have to take all the leave you can,to be there for her,as she needs you just now,
i wouldnt leave yet,the tysabri may start to give her some much needed strength back,in the next few months,i also think you may have rights as Rachaels carer, regarding time off, im sure someone who sees this will come along,with more knowledge about it than i have.hope she keeps improving,poor little love.
J x
Hi there,
please don’t feel too discouraged about the course of R’s illness , when I was diagnosed in 2007, I had fallen ill very suddenly (including severe vertigo and nystagmus) with just about every symptom discussed and came across the same comments saying ‘nobody suffers all these symptoms all at once’ or likely ever !.. I think that sometimes medical professionals think we imagine these things, however, I was functionally blind at the time of diagnosis, through severe bilateral optic neuritis and as a result I wasn’t able to read all the information about MS and its symptoms. Therefore, I can’t of convinced myself of symptoms I knew nothing of!!!
I say all this not to be depressing but to point out that there can and often will be complete recovery from such symptoms. 9 months after diagnosis I had recovered enough to return full time as a Secondary school teacher and Head of Department . I am off work again now but I have had a good 6 years at work with symptoms under control.
I suppose what I am trying to say is that MS is unpredictable and it does make it difficult to know what tomorrow holds, however recovery (partial or full ) from such a myriad of symptoms is possible. I know its hard but try to take R’s MS one day at a time and plan for a future as much as is possible and try not to worry too much.
xx
My work does know how sick R is, my boss has been brilliant and has even visited her while she has been in hospital and come to the house to see her (not to check up on her or me but because we have worked together for 12 years and I consider her a friend) but I don’t feel it is fair as there is only the 2 of us in the office and she has to pick up the slack from me. She always phones to ask how she is when I am off and tried to offer advice (she used to be a nurse). I would not be comfortable applying for carer’s allowance to look after my child as that is my job as her mum to look after her. It would not sit easy on my shoulders to apply from the public purse to look after her. I just don’t know what to do? We cannot afford for me to not work, but I cannot afford for R to be home alone and needing me. It’s just a fecking mess. L x
Linda,
You are a amazing mum and yes it is your job to look after your daughter but not to the extent you put yourself and your home at risk. If your boss lets you keep your job for now then I think you should. Have faith that R’s symptoms will start to get better and then those few hours respite will do you the world of good. If you decide to give up that job because you wish to care for your daughter then you absolutely should be compensated. Looking after your child should not mean that you end up loosing your way of life if there is an alternative.
I wish I could take some of her symptoms to make her life easier or could advise you on medication but I can’t so instead I am going to be your common sense fairy!! (at 5ft 7, with red hair and irish accent, I am a scary fairy) Number 1 - you need to look after your own health too (I will keep repeating that until you listen) and Number 2 - you are entitled to help, monetary or otherwise. Now listen to your Auntie JellyBellyKelly (as my little niece calls me).
I wish you both well & I hope tomorrow brings you both a good day.
Take care hun, with lots of hugs
JBK xxx
Thanks Auntie JellyBellyKelly, am a little crazy at the moment as have a lot of pressure on me. It does not help that my mum who has Alzheimers has a UTI, chest infection and has stopped eating and drinking over the last few days, it looks like it may be the end for her. She is very very poorly. She has had Alzheimers for 11 years and been in a home for the last 5, she has not recognised us in the last 5 years or so but always reacted when we walked in or spoke to her. Today she did not open her eyes, just lay in her bed with her eyes shut. I am so worried for her too. Life just seems a little pointless and hard at the moment. Thanks for good wishes my scary fairy. Lx
Sorry to hear things are so tough. Really hope the medication helps your daughter and she improves soon. Your boss / friend sounds very supportive so try not to worry about work. Sick notes can be given for stress / anxiety so I don’t think you should feel guilty about getting one if you need to. You are having a stressful time which is bound to lead to anxiety. Chin up - one day at a time. Take care. xx
Hi I do feel for you and R it is really tough coming to terms with and R is suffering so much at the moment. I do hope for you the drugs start a more positive move towards relief and R has a better quality of life. I know how much mum’s worry for their children, my mum said yo me the other day what did I do wrong for you to get this, I am now 34 , she blames herself even though everyone tells her it isn’t and it certainly isn’t. Your work sound like they are being supportive, I would suggest you need to see how things go over the next few months and see how the drugs work for R. I know you feel you shouldn’t claim as you are R mother, however you have paid into the system, you shouldn’t suffer because R is ill and needs you. I found it hard to actually apply for PIP, however my life has changed and I have done it who knows whether I will get it. My work are being so supportive and after the other day collapsing in the toilet and them finding me unconscious. My old boss phoned me today to say we need to have a meeting with my new boss to discuss workload and how this is managed. I feel really bad about this, so I understand how you are feeling towards your job. I actually just want to cry as I love my job and getting so frustrated at how much MS takes control. I spoke to my MS nurse today, and need to make appt with dr an then be referred back to neuro for more advise. I couldn’t get an appt to 4th dec. sorry to moan in your post. I just want you to send you my love and hugs for you and R. Hope there is light at the end of this tunnel. Barney
Hi, i wasnt suggesting carers allowance,i was trying to say that as a carer you have some rights,regarding having time off.your boss sounds so good,so i wouldnt think of leaving just yet,seen as you need your wage to get by.
sorry to hear about your mum too, i know how hard it is ,i lost my dad to alzeimers.
J x