I have just found out I have relapsing remitting MS (sorry if that’s wrong, all still very new). I am finding it pretty rough going I have two young children (5) and (2), I have tried explaining that mummy is tired all the time, not very well but I am unsure she fully understands being so young. I love my kids so much and can’t believe how lucky I am to have them both. I have noticed I have been having a lot more mood swings, I can be shouting and then bursting in tears. I am in the middle of trying to decide which medication I should pick out of the two options I have been given. It is so difficult as I keep thinking what to do for my kids sake, especially when some say there can be mood swings which I don’t want it to be worse than it is. I was wondering if there any other mums out there with two young children, who are going or have been through the same situation as I am, and how they are dealing with it. M x
I was diagnosed when my kids were 6 and 3. Similarly to you, I explained that mummy had a sort of bug that made her really tired all the time (I was sleeping for Britain: straight to bed after work (the kids tucked me in) and in bed all weekend most weekends).
I’ve just asked both of them what they remember. My son (now 17) doesn’t remember anything at all - it’s all been normal to him. My daughter (now 20) actually remembers it all quite positively! She doesn’t remember the years when I was in bed all the time though; her memory is from about 8 when I was working much less (because of the fatigue) and she loved me being at home more! I do have a wonderfully supportive husband who stepped in to do a lot of the stuff that I no longer could, but I also found that the inital couple of years of really active MS settled down and life became a lot more “normal” again (helped massively by changing my work hours). I guess that’s the upside of RRMS - we do tend to have better periods and sometimes, for some people, they can last quite a long time (for me, up to 4 years at a time), especially if DMDs are working well.
So I would say don’t worry: kids are great at taking change in their stride. The MS Trust do a really excellent book about having a parent with MS that is written especially for young children - it is almost always better to tell them the truth as soon as they are able to grasp it (obviously the truth at a level that they can grasp rather than war and peace!) so it becomes “normal” / nothing to worry about.
Of course, these days there are DMDs and many more meds for symptoms too and getting the right meds can make a massive difference - so push hard to get help with any symptoms that are interfering with your life and stopping you from doing things with your girls.
Talking of which, mood swings are absolutely normal at this stage post diagnosis; it can be an emotional rollercoaster for quite a long time. Talking really can help, as can getting the right meds to take some of the stress away (dealing with pain and fatigue etc on top of everything else is hard!). Why not try your MS nurse for some advice? Counselling can really help too - your GP can refer you or you can see if there is an MS Therapy Centre near you with a counsellor.
There is no injectable DMD that is best as far as your kids are concerned I don’t think. None of them take up much space in the house, they can be injected whenever suits you best and side effects are generally manageable so they shouldn’t interfere with your relationship with your kids. I guess there could be a concern about kids sneaking into mummy’s stock of syringes, but that’s a simple matter of keeping them inaccessible or using an autoinjector that a young child couldn’t use. There’s a chance that you could be unlucky and get nasty side effects from an interferon which might make Copaxone a better option, but that’s not a certainty by any means. So it’s probably best to try and decide what the more important features of the DMD options are for you, e.g. being able to keep it out of the fridge for X weeks (think about holidays for example), whether it’s an injection into muscle or under the skin, etc. All of that you can find on the msdecisions website. There really is no “right” decision: just go with whatever you think will suit you best. If for some reason it doesn’t work out, you can always change.
Hth! And until that day when you realise that actually life is OK / you are coping, give yourself a break, talk and allow your loved ones to talk to you too and chase your GP and everyone else for the right meds and support. Take one day at a time for now - it will get easier; promise.
Karen x
PS Just in case you didn’t already know: you need to tell the DVLA about your diagnosis and you should also check any policy or mortgage or anything like that that might have a critical health clause (MS is a payable condition).
Hi I am in exactly the same situation as yourself. I was diagnosed with RRMS a year ago when my older son was 6 and younger son was 3. Alot has changed over the year and i have only just suffered my 1st relapse which left me bed bound. I have a very supportive husband who steps in when i am feeling too tired or too weak. I was finding myself having the mood swings and shouting one minute and in tears the next. I think it was my way of accepting the MS (as strange as that may sound) I have two wonderful boys who i love very much. I feel i am blessed with such and a very supportive husband and i believe as a family unit i have learned to accept my diagnosis. At first i didnt think i would be able to accept MS into my lifestyle, work life and home life and now its just apart of all of us. I have been on a range of meds and am currently taking amitriptyline, carbamazipine and baclofen.
Hi all I am in a different position sort of.i have older and younger kids 22 to 7 (youngest) I was only dx in may and found it hard telling youngest 3 what was happening/ how it effected the family. I have re-invented myself and trying to earn to make things ok. They sort of get me but I needed help- especially with a speedy dx Mike
hiya
i am a mum of 2 boys aged 6 and 4, ive been ill for years but only got diagonsed 2 weeks ago, it breaks my heart when i cant do things and like you i have mood swings and i burst into tears and i shout, so thank u hun as u have made me realise that im not alone in that one. my boys are so understanding they say mummy needs to rest and even tell me to go to bed and tuck me in, it upsets me as i keep thinking they are to young to be doing things like that and that i should be the one saying those things. if u ever want to chat hun u can pm me anytime
I was diagnosed when my kids were 5 and 8months. They are now 13 and 8 years.
I went on rebif and have not relapsed on it - i do however have symptoms sometimes.
I have very little help but i have managed fine. I can’t lie and say it’s been easy. I feel very guilty if i let my kids down as they are my world.
You don’t know how your ms will affect you so it’s best to try not to worry about it and deal with it on a day to day basis. Family back up is an advantage for days when you are struggling.
I have no disability so far but that could change overnight so i refuse to worry about what might happen and just get on with my life.
Try the msdecisions website to see if it helps on choosing a dmd.
My reaction to my ms diagnosis was ‘what about my kids? how will i manage?’ - I can understand totally how you feel at the moment but your diagnosis is new and you need to give yourself time to adjust.
Diagnosis is a difficult time - the worst time for me so far. Take one step at a time and don’t feel guilty. As long as your kids are loved and cared for then they will be fine. I get tired also (especially in the holidays) so i do activities in the morning and then after lunch we do quieter things like painting/sticking/reading/board games/jigsaws and they have both absolutely loved having these times with me and if i am really cream crackered i put on the nintendo wii and get them jigging about so it tires them out! lol!!
My teenage daughter now however does not like to be seen with her parents! We are soooo uncool!!!
Best wishes
Teresa.x
Hi M I was dx last Dec with MS and have four sons aged from 17 down to 7. They have been wonderful and have really taken my dx in their stride and adapted like only children can - that is really well! Although, my eldest struggled for quite a while when I was first dx as he had also just started 6th form college and everything got too much for him. I got all the literature that the MS soc recommends for young children and teenagers. It is really useful and helpful. Basically, you and your children will adapt and become accustomed to your situation as time passes. When you wake up in the morning and are having a very bad day, it is them that gets you up. They always keep you going as they will always need you. Hth, Teresa xx
Must have accidentally pressed the anonymous button. Totally unintentional. Teresa xx
Hi everyone I am so sorry I have not replied to everyone has been a very busy week and not the best for me. I am seeing the MS Nurse Wednesday so will be talking about which medication would be best. I was suppose to of done a Dairy since last time I saw her listing what I have done and how I have felt etc. Started off good and failed big time last thing to do with kids and then too tired when there in bed. I will try to respond to everyone but thank you so much for all your kind words etc. M