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Chronic fatigue - Page 2 - Carers UK Forum

Chronic fatigue

Tell us a bit about yourself here.
bowlingbun wrote:
Sun Apr 10, 2022 8:52 pm
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!!!
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: https://www.carersuk.org/help-and-advic ... ne-meetups - 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: https://www.carersuk.org/help-and-advic ... e-sessions - 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.
Joan_2204 wrote:
Sun Apr 10, 2022 2:23 pm
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.
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.