Hi, My husband was diagnosed with PPMS 7 years ago and had to give up work, unfortunately I still have to work full time, and do everything in the house. We moved to a bungalow which needs work, and I am fine trying to do most of the work as we cannot afford to pay for workmen, we also have a dog that I have to walk in the morning and evenings, so you can work out that my day is busy and I rarely sit down before 9 at night. My problem is that my husband seems to constantly have a go because I am so busy, and I understand that he wants company and conversation, but sometimes there is so much to do in the house that I have to say just let me get this done, last night I was trying to finish making the tea and he got in a mood, and shortly after tea stomped off to bed! This is happening more and more and I just don’t know how to cope apart from popping to the doctors for some happy pills. Cannot talk to friends at work as talking about problems is quite boring when everyone has a ‘normal’ life, don’t talk to family, again they do not understand and there is nothing they can do. I have tried to talk to my husband but to be honest it seems that as he is ill, everything I do has to revolve around him and I should fit everything else in around that. He does not realise that I am tired all the time, and now getting very frustrated, and fed up with the bad feelings constantly being created. Any tips on what I can do?
oh anon, i understand how you must feel.
has your husband got a carer apart from you?
maybe a social worker?
i’m sure there are things available. try a new post asking for this.
it doesnt sound like mood swings you are suffering from, just too many things for one woman to do.
I saw your post yesterday, Anon, and did not have time to do anything about it, but you have been on my mind since then.
That sounds a pretty rotten situation for you both. The thing that struck me first was - is your husband doing all he reasonably can to help himself and you? If he is too disabled to do much for himself, that’s one thing. If he could do more around the house or outside it and isn’t bothering, that’s another. It is just as easy to be a lazy filtered word with MS as it is to be a lazy filtered word without MS, and I should know! As someone who has both been looked-after and has done some looking after, my experience has been that there are three things the cared-for person can do to make life infinitely better for the carer: do his best to help himself, accept help graciously when needed and guard against becoming His Majesty the Invalid. There is a temptation when one has had a stroke of sheer bald-headed bad luck (as your husband has) to go into a kind of monumental sulk and become very self-centered. A person can get stuck for years in a place like that, and that is no fun for anyone. It does not help when there are all sorts of difficult emotions to manage - issues of self esteem, envy, guilt at you having to do everything, guilt at being a miserable filtered word, anger at fate. All hard to manage, and made no easier if one is sitting at home alone all day gnawing over one’s troubles.
If you think there is an element of this going on, and trying to talk it through is not getting you far, your husband might well need some professional help to give him a fresh perspective on life and what he can do to make the most of things as they are. Many of us with MS (me included) have got stuck at various points and have benefitted from counselling to help us to get the best out of life when in reduced circumstances and facing the prospect of worse to come. Depression is also a frequent problem, and both talking therapies and medication can make an enormous difference. If you think your husband might be depressed (and depressed people are shockers to live with!) then it would be good if you could get him to talk to his GP about how he is feeling.
The other person who might benefit from counselling is you. I know that the last thing you want is something that takes up more of the spare time you already do not have. But I think you should regard attending to your own needs in this regard as work rather than as an optional leisure activity. Your husband might not be the only one who is getting a bit stuck and short of ideas on how to make things a bit more pleasant and manageable. If you feel locked into a hamster-wheel cycle of essential tasks, you will have neither the time nor the mental space to step back and take stock. Counselling is no magic wand: the practical constraints and difficulties of life remain, and it does not enable one to have 30 hours in the day or grow an extra pair of hands. But please do not underestimate the difference that a fresh perspective can give. Being informed that you are supposed to be entertainer and brilliant conversationalist as well as breadwinner, housekeeper, general builder etc etc would start the sausepans flying in this house - it sounds as though you have remained remarkably calm! But that is exactly the time to address some of these difficult issues - don’t wait until you burn out or reach the end of your tether. Prevention of that kind of trouble is very much easier than cure. So please make time for yourself. Allow yourself to have needs too.
Good luck with it all.