Like many of us, I’ve not been too good over the last week, so don’t intend to be all ‘woe is me’ when others are suffering too, but I just wann a have a winge and hopefully this get it out of my system and stop me crying.
I have been suffering with lower back pain and weak legs which led to me struggling with walking and climbing stairs. Went to see my MS nurse today who said that she is gonna test me for Vitamin D dificiency, to take more painkillers and although she knew I wouldn’t like it, but to take another week off work. She does not think I am having a relapse but more that I have injured my back in some way, but does think it is a wake up call and a warning that I may have been doing too much.
I do have an understanding boss who has been brill since I was finally diagnosed in August last year, but today when I went to see him about my nurse visit he suggested that I may need to think about my future and the possibility of working less days. I just burst into tears!! I have worked all of my life and very rarely have had a sick day so it has been hard for me to have 2 and a half days off sick this week already so the thought of cutting/slowing down is just not in my remit!
I think I am just struggling with the fact that I just cannot carry on the same way anymore and I do have to learn to slow it down some. I suppose it’s just the realisation that this MS IS REAL and there’s no putting it ‘on the back burner’ so to speak. I just haven’t stopped crying all afternoon, so now have a headache and need a hug. Sorry for the long moaning post - I know I’m not the only one though xx
Hi Amanda, being diagnosed with MS is really difficult to get your head round, and sometimes you have to take it easy, slow down and let other people do more. Are you able to cut your hours at work? without putting any financial pressure on yourself.
I was diagnosed over 20 years ago, and it was really difficult, I felt so bad because, I couldn’t do as much as I could before. I now work 2 days a week, my Husband and children do all the housework and gardening (it is now a low mainainence garden), I still feel I do my bit by doing the washing, ironing, shopping and cooking, but it was that realisation that to be able to do some things, I had to give up doing others, and using my energy wisely.
Do you sit in the sun? That way you can increase the amount of vitamin D in your body, I know we don’t have much in some parts of the country, but it is good when you can.
And there is nothing wrong with having a good moan, it gets it out there. You are no less a person than you were before your diagnosis, remember that.
Dear Amanda, We understand, no need to apologise for moaning. Here’s a virtual hug for you … ((((((()))))))) x When you feel a bit emotionally stronger it would be worth discussing with your boss other reasonable adjustments they might make to help keep you working. Could your desk be moved, hours changed so you avoid the rush hour, working from home for some of the time, could you be given a parking space near your workplace to stop you having to walk so far? You are protected under the Disability Discrimination Act and your employer has to make adjustments for you. Some simple changes at work may mean that cutting your hours doesn’t need to be looked at for a while yet. I would have thought that should be a last resort until other things have been tried first. Good luck to you and I hope tomorrow is a brighter day. Max x
aww its poo isnt it. But maybe changes may help you control your symptoms? my boss has me on half hours with full pay for two months, since i was supposed to be off on sick for two months (dr sick note). like you i want to stay at work. she has me doing sit down duties too. then will see how things are in two months and maybe re jig hours?
Hi Amanda, I so understand how you feel - Tme will continue as it always does and you will come out the other side, hang in there. Having the back pain is bound to make you feel low on its own. I was diagnosed in January and though it was very upsetting it can take some specific symptoms before it hits you that the MS is a very real thing and it probably is going to affect what we can do. I think of it as a monster and it needs fighting! Though several times I have been in tears and have not felt very fighting fit! Let’s hope the ‘monster’ will lie down, have a sleep and leave you alone for a while. I am interested to hear what they think of your Vit D levels. I have been meaning to look into what the levels should be and the usefulness of testing. I hope over the next few days you start to feel gradually better. Bea
Hi Amanda, here are some great big (((((((((((((((((((((((((HUGS)))))))))))))))))))))))) for you. It is hard to come to terms with the fact that we can’t do all that we used to but eventually we comply because it’s all we can do. Maybe your boss, without realising it is doing you a huge favour by suggesting you do less hours. Just think of the free time you will have and you can have a rest when you need one.Let’s hope the tests for Vit D help you. Take care. Janet x
Hoping things will settle down soon. My employer was really understanding as my first year was pants too. Luckily my MS settled down soon after starting on Rebif so hopefully yours will too. I did cut down by 2 hours pw as well and that helped. It’s probably not the best time to make a decision like this when you are feeling at your worse so take some time to think it over and discuss it with your nurse, your nearest and dearest etc. You never know, this may could be a temporary thing. In the meantime take as much time off as you need and get well soon
Thanksevryone, there are some good points there. I feel a little better today but there’s no mistaking that I do need to listen to my body more and not be so stubborn. Bea, I will know more on Tuesday about the vitamin D result so will post agin then x in the meantime Mr Robbie Williams will cheer me up tommorrow when I pay him a visit in Manchester xx