Hi,
I feel a bit of a fraud as I’m not a carer and not sure if my situation is appropriate here, but I am affected by my husband’s condition of Chronic fatigue. He was diagnosed about 15 years ago and had to take early retirement because of it. He does not have the typical symptoms, like being confined to bed for long periods, or being unable to do things on a daily basis, but he IS affected by how much he can do, and what type of thing he does. Consequently our lives are dictated on a daily basis by what he can manage. To the outside he appears normal and capable. No one would know he had it. At home however, he often has ‘lows’ which appear most late afternoon. He has to stop, often has a cold sweat, can’t think straight, has brain fog, until it may improve around 7. Other days he may wake up feeling bad, with headache and shoulder ache, and it can last all day. He can no longer do activities which require concentration without suffering consequences. He was recently ill for two days after trying to reorganise some screws because of the concentration required. He will often feel dizzy and is terribly forgetful. My issue is finding an outlet for my frustration, anger and loneliness, so that it is not directed at him. Most things are dictated by how he feels, so I can’t make plans with any confidence that he’ll be able to participate. For my birthday recently we went to two tourist attractions but I ended up going round on my own both times while he found a seat and went on his phone. Unusually, he is able to do physical activity and does tennis, walking football and hikes with some male friends. A walk down the road in the evenings with me is frequently curtailed with him claiming he doesn’t feel well and that he can’t help it. I know what this sounds like! But this is the reality of my life. He can’t drive or be driven for long periods as that makes him unwell for the next couple of days. Sorry, I know this a rant but I just wondered if anyone else is in a similar situation, not a carer, but affected by a long term condition suffered by their partners. Thank you for reading.
Hello & Welcome Joan
There are many definitions of being a carer it doesn’t mean always giving physical support and emotional can be a very tiring. You are a carer has your husband has a disability that effects not only his life but yours. When your husband took early retirement were there discussions and how your lives would change.
It’s evident from what you have written your husbands chronic fatigue is having an impact on your relationship. It’s perfectly normal and expectable to feel frustration, anger and loneliness. These are real feelings and you should know it’s OK to feel this way. However, you need to make sure you have a place just for you to speak about your own feelings.
How often does your husband meet up with his male friends and do the activities. Does he use up all his energy taking part in these hobbies. Do I guess the friends think your husband took early retire because he could and are unware of the original reason.
You are definitely a carer, as your husband is having a significant effect on your own life!
It’s time you decided what you were going to do, and leave him at home so he can do as much or as little as he wants.
Thanks for replying, sunnydisposition.
My husband’s condition definitely affects me as well as him, even though at one point he thought it didn’t impact me too much as he was trying to keep it to himself.
His early retirement was only a few years before retirement age, so it was just something that needed to be done for his health’s sake. He slowly improved, without the pressure of work, but never fully recovered. (His chronic fatigue came on following a virus.)
Having a place to ‘off load’ feels important now, hence my search for a forum of people living with others with a chronic condition. I don’t want to speak to him, as obviously he has enough just dealing with the condition.
My husband exercises in one form or another several times a week. He says physical exercise helps him physically and mentally. I have heard physical activity can reduce inflammation, which may be why he feels better for it even though it’s often an effort to do it.
He has always said that pacing himself has little effect on what he can and can’t do later. He can exercise a lot and feel fine later, or do nothing and feel worse! Often there’s little rhyme or reason to it.
He knows concentrating will usually be a problem later.
I’m not sure if if his friends know about the condition. I do know he prefers not to label himself, as it means accepting the situation, which then has an impact on his psychological health. I think it’s a man thing!
However, by not accepting it, maybe it’s having a greater effect on you?
Presumably you are expected to do the things he can’t, as well as your own jobs at home?
Is your home labour saving, dishwasher, tumble dryer?
Is the garden low maintenance?
Bowlingbun, thanks for your reply. Deciding what I do often means doing it on my own. Sometimes that feels mean because he’s left on his own. It’s an emotional rollercoaster because we can plan something and then he’s not well enough to participate. We sort of limp along. I can’t quite give up the idea of having to do things on my own. I kind of have a foot in both camps.
Bowlingbun, yes by not accepting it, I think it has had a greater effect on me. He doesn’t want to admit to any weakness. He wants to think of himself as being just as capable as he was. A bit of a head in the sand attitude. I do have more work because of it and have considered getting paid help. He was somewhat affronted when I suggested it.
Joan I will have to say this it does sound from what you are saying is like a one sided relationship.
He was somewhat affronted when I suggested it.
surely, your husband would want to support you in anyway he can. Loads of people have cleaners home helps for varying reasons.
Would your husband attend counselling sessions where the counsellor could tease/iron out issues in your relationship. I do know your age are you nearing retirement yourself. If you ever end up at home full time how do you see your life.
Sadly, my husband died as a result of a steadfast determination to ignore the fact he was ill!
You have to stand up for yourself, telling him how it is for you. You were not tied to him when he was working, you need to do some things that make you happy. He needs you to be well, mentally and physically. I’m suspicious of the fact he is well enough to go out with his mates!!!
It was the decorating of our spare room. It just wasn’t happening and I thought maybe it was too much for him. I said I’d considered getting a decorator. I think it affects his image of himself and I suppose I try to be considerate of that. No one likes to feel they’re not capable of the things they once were. He HAS agreed he is no longer capable of refitting the kitchen.
He wouldn’t attend counselling. I do not work, although, having diabetes myself, I was going out about 4 times a week to exercise classes to control it with diet and exercise, but Covid meant they all stopped. I now just do Pilates via zoom.
I’m so sorry to hear that, Bowlingbun.
Telling him how it is for me ends in an argument.
Yes, going out for walks has been a bone of contention. I’m all for him going, what I don’t understand is how it is something he can do, when a short stroll down the road is too much, and/or he feels ill etc. he has no explanation for it either. He is definitely not incapable. He can wash up, cook, do the garden etc. The fickle nature of when he feels unwell or doesn’t, at unpredictable times is perhaps the. most challenging.
Hi Joan,
As a forum ambassador I wanted to welcome you to the forum and highlight a couple of different options for connecting with others and for getting support from Carers UK should you need it. You may find talking to others helpful, particularly those in a similar situation, and as you have started to do here on the forum.
Carers UK run online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to. I’m sure you’ll find many other carers are in a similar situation to yourself.
You can find information on how to register to our online meetups at the following pages:
Care for a Cuppa: Online meetups | Carers UK - the next online meet up is today, 15.00-16.00 with further sessions shown in that link. This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.
Share and Learn: Share and Learn | Carers Scotland - these sessions range from creative writing activities to beginners Latin dance sessions.
I suggest you also get in touch with the Carers UK helpline to discussion your situation and what support is available
The Carers UK Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org). They can help provide support and guidance on:
- Benefits and financial support
- Your rights as a carer in the workplace
- Carers’ assessments and how to get support in your caring role
- Services available to carers and the people you care for
- How to complain effectively and challenge decisions.
Thanks Rob.
Dear Joan, I was attracted to your post by the title alone.
I’m the sole carer for my wife who has had this for about 12/13 years. 90% of how you describe your relationship and life is the same here.
95% of our relationship really is about carer/caree. It’s not a ‘normal’ marriage and hasn’t been for years. Everything we do is dictated by how she is on any given day. EVERYTHING.
She has a ‘good day’ - a very relative term - and anything she may do can take her a week to get over it. She cannot walk ten yards at the best of times.
You have put into words a lot of what I feel and have been going through, and will always continue to as long as we remain married.
By all means do get in touch. It’s nice to talk to somebody who understands 100%
Hi Anthony,
I think I have sent you a private message, if I have done it correctly.
You certainly did, I’ve replied.
all the best
A
The comment “as long as we are married” worries me.
I’ll tell you my story to make you think about the future. None of us know what life has in store for us
I was happily married for 34 years, until my husband had a fatal heart attack at the age of 58.
We worked together, played together, as long as we had each other, we were fine.
I went to the doctor with indigestion and was diagnosed with a large tumour on my right kidney. Major surgery followed. I went Christmas shopping that year not knowing if I would still be alive for the next Christmas.
18 months later, 3 months after my husband died, I was driving through the New Forest where I live in my husband’s Range Rover when I was hit head on by a boy racer who had lost control. I was virtually unable to walk for years, but still caring for mum and son.
What will happen to your caree if you are suddenly taken ill or die?
I have known a number of people who were carers who have died before their caree.
As my son has severe learning difficulties, I’ve done everything possible to make him as independent as possible before I die.
When a member of the couple has a long term incurable complaint, I believe that it’s really, really important to have someone else who knows the caree and can be called upon in case of emergency.