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 (email@example.com
). 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
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.