I don’t know why but this weekend had been really difficult…the worst since dx in February. Feel really down and tearful at the slightest thing…I thought I was dealing with this but it seems to have crept up on me whilst I wasn’t looking. How do others deal with the range of emotions this bl**dy disease brings? I hate feeling sorry for myself and feel awful that my husband has to deal with me too!!
Rant over
advice appreciated! xx
Emma
P.S I know it is M.S awareness week but having celebrities on T.V discussing how horrible this disease is made me feel really cross this morning…how the hell does Lorraine know how it feels!!! anyway!..
P.P.S…I know …it’s good to have exposure for the charity and research…like i said in the title of this thread, i need a kick up the b*m!!
We really do have a double whammy with MS. Firstly the lesions themselves mess about with our emotions which, like everything, come from the brain. Secondly having MS and dealing with all the symptoms bring up loads of emotions.
I try (and don’t always succeed!) to live my life in ‘baby steps’. Just deal with the NOW.
If I’m feeling emotional I try to stay very calm. Do something soothing… watch movie or read. I try to look after myself in the same way I would look after someone else. Extra calm, nice food, quiet and gentle.
Easier for me as I live on my own so don’t have someone else to worry about.
When you are feeling calm try and explain how it feels to your husband. If he understands how emotions affect us with MS he’ll find it easier as well.
Take care… and when the tears come remind yourself why you’re feeling like this… and stop beating yourself up for it eh?
I suppose also finding it difficult as we are trying to make plans for the future…as simple as where we are going to go on holiday next year and are also looking to buy a new house…guess it’s just brought it home to me that I don’t know how i’m gonna be by then!! but then the other half of me thinks that I can not live my life worrying about ‘what if…’ xx
Emma, I know exactly how you feel! This weekend I broke down (relapsing at the moment) and told hubby I thought he would leave me when I’m wearing nappies and can’t look after myself at all. I mean, worst case scenario or what? I said he can put me out of my misery before it gets that bad! He basically told me I’m an idiot and I’m stuck with him forever!!! But I’m back to my usual self today, albeit in pain with the relapse, but hey ho! Making plans is hard - we’ve gone ahead and booked our holidays for this year and it had given me something to look forward to. But like you, we want to move at some point and part of me thinks maybe we should be looking at bungalows (and DEFINITELY ruling out three story properties!) I think talking to hubby this weekend has helped and I’m considering counselling. I think communication is vital, so just venting on here can help a lot! Take care x
I have got an appointment with my G.P in a week or so and am gonna ask about seeing someone to talk to. I don’t even have the reason of having a relapse to be crying about!!! I have already said to husband that he could leave…I don’t want him to feel bound to me or feel sorry for me…feel gutted for him as we have been married less than 2 years and now he is stuck with me!! (although have been together over 15!)
We are also waiting for my critical illness claim to go through…so am worried about that and work and …blah blah blah…wish i could turn off and relax but find it very difficult!! may go back to hypnotherapy…although the hypno gastric band didn’t work it may be good for relaxing techniques!!
If you’ve been together 15 years, I’d imagine hubby is pretty committed by now!! I’ve been with mine for 15 years too and married for 9 years next month. Good luck with the insurance claim - mine went through fine (two policies, two different insurers). I think that was a blow too though as it made it all feel real. If an insurer would pay out that kind of cash without question, it must be bad! It’s been a godsend though as we’ve paid off the mortgage and changed both our cars for automatics. We’re now using the extra disposable income to enjoy life now and not worry too much (within reason) about the ‘what ifs’. I’ve tried reflexology and that was good for relaxing. I’ve also previously had acupuncture (but not for MS) and I’m thinking of trying it again. Can’t do any harm and a bit of relaxation can’t be bad. X
Emma, I hope you don’t mind me asking but how long did it take for your claim to go through? Also was wondering if you have ever been to M.S society groups or anything like since ur dx?
My first claim (Standard Life) took 2.5 weeks from first phone call to having the money in the bank - and that was the bigger of the two policies! Second claim (Scittish Provident) was a slightly more realistic three months. I used to work in insurance and I know it can take a while as they gather information from your GP and consultant. Mine was just freakishly quick with the first claim! Haven’t been to any groups yet but I have been seriously considering it. I was just a bit worried that I’ll be the only ‘youngster’ (at 33) there, but maybe that’s me being ignorant about it all. I also need to fit it around school and nursery as I don’t think they’d appreciate my tornado children disrupting things! My MS nurse has also put my name down for a getting to grips with MS course which should start in the summer (I missed out last year as it was fully subscribed). X
Wow, 2 and a half weeks is rather impressive!! Did you ask to get a copy of your G.P’s report? When i was first dx, i thought about groups but was worried it would only worry me more!!..and, like you being younger (ish) at 35!! .I am also supposed to be going to a newly dx day next week but haven’t had confirmation so doesn’t look like we have a place…really gutted!!
How do you cope with having 2 kids? I find work a struggle…and thats only 3 days a week at the minute…god knows if i can do full time again…i hope so :0)
I didn’t get a copy of the report, but I’d love to have seen it. I wasn’t even sure if I fit the criteria for the claim at that point, so my consultant or GP must have said something right! My kids are hard work sometimes (but totally worth it!). Not working helps - I chose to stay at home after having my first. They’re 3 and 5 now so eldest is now at school most of the day and little one goes to nursery three mornings. I’ve learnt to pace myself when they’re out so I have the energy to cope with them when they’re home (two boys, so very energetic!)! My plan was to go back to work when little one starts school next year, but now I’m not so sure! Luckily hubby is very supportive. I love them to bits, even when they do run rings around me! X
You are definitely not the only younger ones…I’m 32 and definitely have days like you describe except do tend to keep my emotions in and feel often that they are close to bursting out in some situations. My last relapse was the beginning of this year although they think it started end of November really…this has left me with damage in the left leg. Prior to this all symptoms were sensory so its a bit of a shock really. Made me make a lot of decisions and look at my life…I have a three year old, nearly four…he’s my life. We were trying for another, I’ve now decided not to have another as I do not want to risk my health further and would rather be the best I could be for the child I have now. Feel very bitter that I feel I have to make such a decision but hey ho. I wish there were groups round here to go to just to meet people that really do understand. I have great friends and a great husband but as much as they try they cannot understand how it feels can they? I have times of looking at other people, walking, running etc and being ver envious that they can do all these things without difficulty. Never thought I’d be 32 with a walking stick in my bag (not had to use as yet) and such a young child…thought I might have got him a bit older. I am due to start DMDs soon. Not sure if this has any relevance to your post as such but just wanted to say your not on your own. We do have up and down days or weeks but it does seem to be a common feeling x
Sounds like you adore your little boy and i can only imagine how hard the decision not to have another one must have been. I was told by my G.P that if we want kids then we had better hurry up!! Wish it was that easy…we have been trying for a while now with no joy!!
Do you know which DMD you are going to start? I was gonna start avonex but decided against it due to side effects and so far, touch wood, i have been o.k…like you only sensory issues, but again, like you my left leg been playing up for the past couple of weeks…not sure if M.S related or not…not sure if should go to Dr or not.
sounds rediculous but i think i felt really peed off this weekend as i was just soooooo tired on friday after only 3 days at work. I got home on friday night and cried because i was just so bloody tired…like i said rediculous!!
this site is amazing…really helped me when first dx and has done again today…thank you xx
Lisalou, that must have been a hard decision but I can totally understand why you’d stick with your one child. I was dx’d after having the children so it was not something I had to worry about luckily. One of my biggest worries is how the MS will affect my children if I deteriorate quickly or have a big relapse. Emma - good old GP, if only it were that easy. For some people it is, but hubby and I waited four years for our first child and went through three cycles of IVF. He was a natural surprise in the end though!! Second pregnancy happened the first month of trying! So you really can’t plan these things too much. I’ve heard that pregnancy is good for MS, so fingers crossed for you! X
I do adore him however if we didn’t have one I wouldn’t rule it out so don’t let my decision impact you. My decision is becausr I have one so.i need to be aswell as I can for him. I loved pregnancy however my birth was not great at all…no connection to the m.s more poor care from the professionals. It took us 18months so don’t give up. Charlie happened when we were having fertility tests bizarrely so don’t lose hope. No ive not found any groups although I haven’t looked as such. But it would be such a good thing I think. Ive opted for rebif…dreading it. Im a needle phobic hence why I picked rebif as it looks less like a needle! But my hope is it’ll work and reduce relapse and severity. Ive had two in the space of six months now. There’s a worry another will leave more damage. I worry Emma about the effect on Charlie but I think all we can do is keep our best, keep positive and continue to be good parents. The m.s can’t take that away. I work im an area where we meet young carers and work with many with different illnesses such as m.s. But I see different sides because of this in terms of effects on children. I see some quite inspiring people x x
Hi, the insurance claim takes as long as it takes for your GP to reply (I am told). Had a letter part way through my claim to let me know this! I agree with Emma-C. Having changed my driving licence this was the last thing to arrive and it seems a sort of “ok, we recognise having MS is life changing, here is the money”. It felt that this was the last legal fight which was not a fight so felt a bit ‘this is now it’ (not that it is, I know, with all others once I cannot work).
Agree there tends to be a lack of groups for younger people within the North West so coping my own way, throwing what energy I have into sports organizing and taking part if I feel up to it!