Hi so not to sure what to write mostly as it’s my wife that has ms and not me but I find it so hard to just get on with life when she is ill. Now I don’t want people to think I’m moaning and I understand I need to be strong for my wife so I think I’m asking if anyone has trouble with everything that Ms is? See I no I’m not making sense but I feel like I don’t have anyone to talk to both our family’s don’t really understand anything that we are going through if you tell them she is having a bad day they will say oh has she got a cold or oh I m not well to. When I say no it’s here ms they change the subject or get of the phone. Now I sound just like them moaning about myself and I don’t want to as its my wife with ms. Seei don’t even no what I’m really writing or asking. I have some troubles with feeling down but I seem to find it harder when she is not doing well its so hard to go to work when she carnt get up or she phones to say she is having a bad day but I need to work to keep money coming in. It didn’t help when she lost the motobilatiy car and the money 14 months ago and we had to fin a extra £200 a month to pay for a car so I have to pick up overtime see I’m moaning now I sound like a fool and I’m sorry for that. But if I phone in I’ll to look after her I lose money and then we worry about that and that don’t help her as worry not good for MS. I find it hard to do anything on my days off alone as I feel guilty doing something I enjoy (it’s running) due to my wife being ill and not really being able to go out as much as she wants so why should I go and enjoy myself also I love spending time with her anyway but running really helps me sort my head out. Oh well I’ve had a rant now and I keep deleting this to stop myself posting it and sound like a moaning husband. Sorry
You’re not being ridiculous. My partner’s bad days can be triggering for me too! You need to keep running. It’s so difficult at times but the most important thing is to remember your role as someone who cares for someone, is firstly to be a husband, followed by a carer. Make sure that stays clear in your head! Your partnership is defined by equals. Things are tough for her but they are equally for you. If I’m being honest, I wonder how open you have been with your wife about how you’re feeling about it all? Yes, we have to be strong. Yes, we can’t imagine what they’re going through. But when you’re struggling and not explaining that, the whole relationship suffers. Like i said, firstly and most importantly, you’re her husband. I think when you outline your stresses and your worries in a constructive way, you’ll find that the perfect person to talk to about all of this, will be her.
General pointers for these conversations:
-Be open and honest but make sure she’s not feeling responsible for your stresses. Sometimes I talk to my partner like the MS is a third party. Like it is its own person. This personification helps her understand I am not talking about her, but about the disease.
- Make sure the future discussed is bright. Futures seem to be a worrying theme amongst sufferers of MS because its so uncertain.
I know I’m probably just spewing out a load of information you already know but sometimes we find ourselves so deep in the situation, we forget to take a step back to basics. I hope you find some peace with it
Caring for someone with MS (or any illness for that matter) is always a juggle. I care for my wife who was diagnosed over 25 years ago, but over recent years has gone from being fairly self sufficient to needing 24/7 care so I can relate to your post. You always want to do the best for your partner, but you want to have a life too, but when you do something for yourself you feel guilty.
Whenever we have contact with Drs, or nurses, physio etc, they are as concerned for me as for my wife. This seemed bizarre at first as she is the one who is ill, but I get it now; if I don’t look after myself, both physically and mentally, then I risk not being well enough to look after my wife.
I’ve struggled with commiting to work over the past 3 years; I’ve gone from full time, to part time, to no work at all as I need to be at home with my wife and there are very few jobs that allow this. Thankfully my wife can still work from home, which she does 3 days a week, so we get by (I’ve also been lucky and started a job this week for 2 days a week from home). Even this though is hard as I’m easily disturbed if my wife needs urgent help during the day.
We’ve learned not to worry what others think; the friends and family who understand MS have stayed close to us, but those who don’t (or don’t want to) we now have less contact with. To be honest, our life is complex enough to spend too much time and energy on what others think!
The best I can advise is try to get into a routine each day. This takes away some stress and helps us get through the day. I get my wife up the same time each day, get her washed and dressed and if she is working set her up at her desk, if not working i set her up in her reclining chair. If she’s still tired after breakfast she can nod off for an hour in her chair; we find this a much nicer place to be than in bed all day.
Re ‘my time’ - I don’t run, but I do cycle. I mostly do this indoors these days (on Zwift) but do get out a few times a year if my wife is having a good day and I can set eveything up right (she has a Supra-pubic catheter that needs emptying every hour or so, therefore if I’m riding I add a night bag to the set up). It’s so important to have some ‘you’ time; as our world gets smaller, and our lives are more dictated to by this damn disease, it’s so important for you to keep something for you. At times I also feel like I no longer exist, I have few friends left in my life (I never get to the pub anymore 
), so keeping a hobby that is ‘me’ is so important. Thankfully my wife understands this and encourages it.
Hopefully there is something here that helps and shows that you’re not alone? MS is cruel and impacts more than just the sufferer; don’t feel guilty for your feelings. Understand what works for you, because if you can keep yourself well physically and mentally then you will much more easily be able to care for your wife.
Good luck.
Rob,
you are not a moany fool, you are dealing with a difficult set of circumstances. A serious illness impacts on many people, not just the person with the condition. Provided you have good communication and trust, you will be amazed by what you both can deal with. You clearly care for each other, you must (in my opinion) also be kind to yourself and have some “me” time. This will ensure that you are in the best state to be there for your wife.
My wife is amazing in the way she cares for me, so I try to reciprocate by supporting her non MS activities or time with her friends.
I wish you both all the best
Mick
Thank you all for the replys and kind words
Rob
Hi, MS doesn’t just hit one member of a couple…it hits the pair of you! I know this and understand every word you are saying…MS hit me 22 years ago. Hubby took early retirement and voluntary redundancy at 50. He intended to have a year off, as he`d worked 28 years for the same company…some days 14 hours a day! Then whilst he was enjoying his free time…WALLOP! I was struck down. He cared for me alone for 11 years. He has rheumatoid arthritis and I could see looking after me was wearing him down. I got carers in…we paid for them with Direct Payments. That was 20 years ago…still have carers and life is still difficult…but manageable. Boudsx