I don’t know what to do I have RRMS, two children and another one due in April and despite pregnancy apparently reducing symptoms mine is severly affecting my ability to walk. I had to get my mum to take my daughter to her swimming lesson because of the inability to walk over two weeks ago and havent heard from her since…what do I need to do to make them realise?
I don’t know why I’m so surprised when they haven’t spoken to me about any of it since it started or since my diagnosis last May.
Sorry to be so miserable I am seeing a ‘well-being’ person to try to help my depression.
Big hugz xx. I do understand how you feel. I always try to explain mine to my family like my legs feel heavy like when you wear weights around your ankles at the gym. Thats why Icant walk as far and get tired so quickly. My hands are always like I am wearing a pair of gloves hence the reduced sensitivity.
Its very difficult because they probably dont know how to address it or want to upset you. I havefound that throughout my MS my family also greive for the loses I have. I have always been very open about it and try not to talk about it all the time which I now only bring it up when Im having a relapse.
The best thing I did once was to ask my mum to lift my leg when I was at the physio when I was having a relapse. She then started to undersatnd how difficult it is as she could feel how heavy it was and I was unable to lift it myself when walking.
MS is the first thing I think of in the morning and last thing at night and I think it always will be. That isnt to say Im thinking about it negatively more like how will I be tomorrow and since joing this forum more positive about what the future may hold.
You are still quite new to a diagnosis and you are still learning about your disease and what might make it worse and what might help. Im glad you have joined here as I know that I have had MS for over 10 years and have found some much comfort and support within the few days I have been a member that although I had accepted my MS and was positive about how to manage it I am even more so by some of the posts people have made here.
I wish you all the luck for the future and I do help that your sessions help you come to terms with things and maybe give you some suggestions on how to approach it with your family.
Hi Becca So sorry you’re struggling so much to walk, it must be so difficult with the extra weight of the pregnancy. I know what you mean about family not knowing how difficult things are. I made sure that I gave my Mum an MS soc leaflet to read as she had done nothing to find out about it. If I tell her that I am suffering in some way, she always has a worse symptom. There is not much wrong with her except old age! Good Luck with your baby, I hope the birth goes well and that you start to feel better. Thinking of you, Teresa xx
I think a lot of family nott knowing etc,is down to us,because we always hide how we really feel,you and I have never told anyone the truth of how yyou are feeling,so evryone thinks we are ok,it is there and our defence mechanisim,we dont want to tell anyone how we feel because we do notwant to make them feel bad,chin up,aand if u feel u need to rant and rave ,tthis forum is here for you
I think a lot of family nott knowing etc,is down to us,because we always hide how we really feel,you and I have never told anyone the truth of how yyou are feeling,so evryone thinks we are ok,it is there and our defence mechanisim,we dont want to tell anyone how we feel because we do notwant to make them feel bad,chin up,aand if u feel u need to rant and rave ,tthis forum is here for you
I’ve never had this happen to me (my mum actually sent me loads of MSS booklets when I was first diagnosed!), but I can imagine it must be terribly frustrating and downright depressing.
I know I hide things from my family sometimes, but then that’s mainly because they immediately think things are worse than they actually are and start worrying needlessly. Perhaps your family need the opposite? i.e. tell them everything, warts & all, and don’t let them leave the room until they have faced up to your diagnosis and what it means, as well as how they can help?
Of course, some people find it very hard to know what to do and how to act when someone they know is ill. Perhaps your mum simply thinks that you will ask when you need help, so if you aren’t asking, you’re fine? If that’s the case, maybe you just need to ask her to come round for coffee and a chat, then explain how you’re feeling and how you really need her help right now?
I hope you can work something out very soon.
Good luck with the rest of the pregnancy - I’m sure it’ll be worth it
In my experience people not understanding, not grasping just how much our symptoms and relapses affect us, is a common problem. I think it’s partly ignorance - most people don’t know the first thing about ms and then there are those that are blinded to conditions like this because they can’t actually see it with the naked eye - so they figure there can’t be anything wrong! It’d be different if we had a plaster cast or something, they could see it then.
Also I think when it comes to our nearest and dearest it’s not necessarily an easy thing for them to accept. I know you said that your family haven’t spoken with you about your diagnosis - so maybe you should take the bull by the horns and broach the subject with them? Or order some booklets from this site ‘about ms’ and give them a copy? It might hammer home to them just how much you are struggling. They could visit this site themselves and have a look at the forums to see what we’re up against?
One thing is for sure though, there’s definitely no need to apologise to us (or anyone else for that matter) - you’re not being miserable, life can be hard enough as it is without the added extra of having a conditions such as this. We all know that feeling.
I must admit my mum did find it very hard to initially mention MS when I first told her about the possibility and they do only see me when I am well enough so I am sorry to them for moaning just because I’m having a bad day.
I found out recently, from an aunt, that my father couldn’t talk to me about my MS, He feels it’s ‘his fault’?! He is in his 80’s and to see his youngest daughter struggling is too much for him. Since then I can understand and forgive his ‘thoughtlessness’. My mother is dead so it’s just him.
Sometimes people don’t talk about our health for other reasons than those we think!!
The society has a huge list of free publications - find them under the [SUPPORT] tab above.
Order the ones for the kiddies - there is one about Daddy having MS and one about Mummy. Leave them where your family can see them, or better yet get the family members who are probably in denial about the whole thing to read the relevant one to your children. If your children are old enough, get them to read the relevant one to the family members.
We have the opposite problem - a daughter who really does not appreciate just how bad her parents really are (or who does not want to face the problem), although her Registered Nurse younger sister is trying to get the message across.
I think this is a head-in-the-sand approach: “If I cannot see how bad you really are then you cannot really be bad” sort of thing. I doubt if it is intended to hurt anyone.
Becca, what your mum and family are doing is wrong, no excuses. Your parents should be there for you, and they should have taken the initiative to find out how MS affects you and what they can do to help. I am frankly disgusted when I hear people’s experiences like this - I mean I moan about my mom, but she would never behave like this!
I hope you find some resolution to this - sometimes just venting as you are helps a lot, and I’m glad to hear you’re seeing a well being person which I intend to Google now as I would like to see one myself!
Have you considered writing your mum a letter telling her how you feel?
I think the situation isn’t helped by someone my mum knows possibly having it but she hasn’t had a diagnosis and doesn’t have symptoms. I’ve tried to explain that it’s different for everyone but never mind. I’ve got my other half and my daughter watched a DVD called My Mum’s got MS partly to let her know what’s going on (she’s only five) and partly to help her understand and not feel awful or embarrassed when her so-called friends take the mick. I’ve got Gareth and my babies I’m grateful and happy they are ok with what’s going on.
I completely sympathise with you. I don’t have any family support and I have stopped expecting it now, we just get on the best we can and call on favours from friends when I get stuck. I think it’s hard to live hoping people will change, it just makes you feel more down thinking that maybe something will change for the better. I think you need to make the best of what you have and not wait for others to help. I’ve been much happier since I accepted that. I ask for help when I need it cause I can’t manage things in my own, but mostly I just have to bash on best I can. Take care xx
