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Newby - Feeling alone

Hi Was finally diagnosed a couple of years ago now after 5 fives of most of my body going numb. My last relapse was a dozey and I never seem to fully recover. They’ve started me on Rebif now and this is my first whole week. Been going well and I do sleep through the symtoms. I am a single mum and I work full time. I have no other choice. None of my work collegeaues know of my illness. I struggled so hard over the last few years to stay in work. Having only recently started this job I did not dare mention my illness. I don’t have any close family and the ones I do have do not seem to think my illness the least bit serious. Because I don’t ‘look’ ill. I’ve very much alone tackling all this day in and day out. I’m worried sick about possible depression side effects. I’ve always been hormonally challenged. Is this the Rebif? Or am I just having a bad day? Who knows? Who cares…

Hi Sounds like things are really hard for you at the moment. I can’t offer loads of advice as I’ve only been diagnosed myself a Few months, but its good that you have started treatment and I’m glad the side effects seem manageable for you. I can only imagine how hard it must be as a single parent who works full time and having to deal with ms on top. I have two young boys and I know how exhausting it can be trying to be positive for their sake! I am the same way with the worry about depression, my nurse is referring me to a counsellor to try and help. Maybe it might be helpful for you to talk to someone about your fears, then if depression does hit you may feel more prepared. Could you try and get your family to understand ms a bit more? I got cross with my friends and family that didn’t make much of an effort. I hope what I have said has helped even a little, this forum is full of lovely people who are always here when you need to talk and most of them are far more knowledgeable than me! Hope things are better for you tomorrow. Laura x

hi kittybemine

welcome to the forum

its useful to have the leaflets from the ms society to show people what ms actually is.

these are free of charge.

does your employer know about your illness?

do you go to a ms therapy centre? these are really good places to meet other people going through what you are.

carole x

Kittybeemine I care about you although we have never met. Great that you are on Rebif because that really can help to slow progression and reduce relapses. I too haven’t told people at work yet - except see my recent post today on disclosing MS. If you feel you need reasonable adjustments think about disclosing. This may make it easier for your working life.Your manger and HR will have to keep it confidential. There is really useful information on this site if you search for Work and MS I too feel work colleagues will not understand. What’s the matter why are you moaning you look ok. But how can they possibly understand the invisible symptoms? I have had counselling through a 24 hour telephone service. This has been invaluable if just to offload. They do not judge just listen offer advice and support. This is through my GP. Perhaps yours might have similar. Also controversially I have started taking St Johns wort. Now the problem with this is that NICE which is medical law???!!! Do not recommend St Johns wort for anyone. However I believe in Germany GPs prescribe it as a first line treatment for depression. I am not suggesting that you take it. I do believe it may interfere with other medications. I am planning on mentioning it to my GP the next time I see him. Is it working for me? I don’t know. Hope this helps. Hugs Min xx

Hello and welcome

It can be hard to come to terms with diagnosis which is why this site is so valuable. If nothing else it proves that you are not alone and you don’t have to cope with it on your own. We are all here to support each other through the ups and downs that MS brings. You will also find loads of really good advice from people who have lived with MS for many years.

I was diagnosed 4 years ago and told management at work immediately as I was struggling after a relapse and I wanted them to understand why I needed time off here and there. I also told my immediate colleagues (who, as it turned out, weren’t as understanding as I had thought they might be in the long run) just so they knew why I kept going home early. Once you have told your employer you are immediately covered under the Equality Act (which replaced the Disability Discrimination Act) and this protects you against discrimination related to your illness. This means you must be protected, amongst other things, against harrassment or bullying by your colleagues.

I’m also a single mum, my son was 15 when I was diagnosed. He works now but I am still the main breadwinner in the house so I do understand your need to work. However, your health comes first and if you need some time off to recover properly then that’s what you should do.

With regards to your family and friends, could you print off a list of symptoms off this website and use that as a starting point? It may help to prove to them that just because you don’t look ill, there are lots of invisible symptoms which do cause you some difficulties all the same and then perhaps you can mention that if they could offer some practical help it would be appreciated. Most people prefer to be asked for help so perhaps you could ask for one of them to come and do the garden for example, or do some decorating, or heavy lifting. Think of some jobs that you have been putting off because they are too tiring and then explain why it is too difficult for you and ask for the family to help. Perhaps you could make it a social occasion by putting the barbecue out and getting some to do the garden, for instance, and the others to grill some sausages and burgers, then the children will be fed as well and you won’t have been lonely on that day? Kill two birds with one stone?!

Hope this gives you some ideas, be kind to yourself and take one day at a time

Tracey xx

Hi Kitty,

who cares? WE DO!

This forum was set up to give folk like us a listening ear. A supportive feel that we are not alone. We understand when others dont.

I think you may benefit from some kind of counselling and i`m glad to see you are being referred for that.

Take your time, never beat yourself up about having MS. Its not your fault. its no-one`s fault.

Holding down a job as well as being a single parent, must be so hard.

Is there no-one who could help with the housework and child care, to give you a break now and then?

Keep chatting to us, yeh?

luv Pollx

Hello Kitty,

Although I have just recently re-joined the forum I think you can comfort yourself in that you will always have friendship and support and that makes such a difference particularly on days when life can be overwhelming.

It has been my experience that employers prefer you to tell them when you have health issues; not because they will look for a way to dismiss you but to enable them to put things into place to help you stay in their employment for as long as you are physically able.

It helps them be more understanding when you have to be absent,as having sick days are worrying enough without having the additional worry of what your employers will be thinking.

I dont mention my MS to people unless I’m in a situation that calls for me to do so and often when I do, people react by saying they wouldn’t have thought it! I never answer the reply as I find it difficult sometimes not to be a teeny weeny bit sarcastic in my response to them but then I remember that there are lots of people who only know that MS is an illness and will have never met special people like us never mind how we are supposed to look.

I am fortunate that my family and friends are supportive without being overbearing, I am a very independant woman and in the past would not ask for help but as circumstances have changed I ask now “not a lot” but I ask and they are there.

Sometimes we just need to make our family more aware of how things really are.

You are an amazing woman and mother and if you can find strength to be this amazing you will find the strength to do what is right for you and your little one.

The very best of wishes

joy

Thank you all so much. I was in a dark place last night. Just the fact someone has talked to me has made me feel better! Its difficult with my family. My mother has terminal lung cancer and has survived two years so far and although stable at the moment it’s just a matter of time. She understandably has her own fears and problems at the moment, particularly since my father died a few years ago. The rest of my family are not close. I kind of don’t like to tell other people about the MS because they tend to fit you into a box. I’m not comfortable with that. MS is something I have - it is not who I am.

Again - thanks for making me feel not quite so alone xx

Kittybemine Your never alone there is some great people here who are always willing to listen & advise. Sorry to learn of your mum’s illness this must be taking it’s toll on you on top of the monster. Sending yoy cyber (((((hugs))))) Sue x

Hi kitty, You will find this forum very helpful…lots of good advice, reassurance and brilliant people who will keep you chin up. I was diagnosed in 2004 however its only recently that its impacted more and affected my left leg to a point where it can restrict how I walk. I am adapting to this and you will see from some of my posts I’ve gone from worry etc to pointing out times of success and I too am also due I start Rebif Si it wold be good to hear how you get on. I have a three nearly four year old so can imagine being a single mum is hard…I have good support from my hubbie and family however I imagine like you you want he illness to have as little impact as possible on our child? How old is he or she? My son knows I have a daft left leg and he is slowly beng educated to the fact that there are some things I cannot do but he’s great. They certainly keep you going. You’ve a very difficult situation at home but when you need to chat or vent this forum is here…and if you need any support but you dont want to put it on the forum feel free to pm those you think might have some good advice … I have done this before. In terms of depression and rebif this is something I’m worried about too. However do not always associate feeling low to Rebif…given what your going through at the moment it might be a reaction to whats going on in your life right now. Maybe some herbals might help? I have some St. John’s wort which I cannot take as it effects the pill… Someone on this site recommended it. If you PM me I could send it you if you felt you wanted to try these? And I wold agree with Tracy that under the DDA or now Equality Act it is worth telling your employers as they then have to make adjustments etc. My employers have done this for me and it covers me if I’m off sick too without having to worry about disciplinarys etc. Hope this post has helped you and I’ve not rambled on too much …keep that chin up. As someone on her often says ‘I have m.s but it doesn’t have me’…good statement to remember xxxx

Hi again, you want to share something which my then 2 yr old granddaughter said.

She stood beside me and said Up, banma. tand up.

I said I couldnt as I have poorly legs.

She bent down, placed a little kiss on her hand and put it on my feet. Then she looked at me and said…

better now

then off she toddled to play with her dolly.

Isnt that just the cutest story ever!

luv Pollx

Hi Kittybemine,

Sorry about your diagnosis, but you’ve found a forum where you can get support and help.

Jen x