New here

Hi,
I am new here, I joined for advice as lately it has been a real struggle.
Basically my partner has fibromyalgia, anxiety, stress disorder, cfs serious ibs and mild depression, he has been like this for the last 6 years with the last few being the worse. It has now got to the point where he will bath once a week, he doesn’t leave the house and is very reliant on me. He has now, this last week been diagnosed with allergic conjunctivitis.

With the allergy, I have spent the last couple days deep cleaning the flat to help ease his streaming eyes, which it has helped but it has left me in pain and unable to sleep because of it so today I am tired and emotional.

Today my partner has not moved as he has suffered severe rigors (shakes) his temperature has gone up and down so he is obviously having to fight off an infection of some sort.

The rest of the time it’s like he has given up and become totally dependant on me.

I cook, clean, feed the cat, drive if need be, collect any meds, I don’t leave the flat, “if I can’t go out, why should you” I’m told.
I’m bored, lonely, stressed and in 2019 when I finally thought I was going to start trying to take back some control I started getting painful hands which spread to my shoulders and now the rest of my body, fibro maybe?
I have managed to get to 2 of 3 appointments which is a miracle as they usually get cancelled due to him being ill.

I’m am struggling so much today, I just want to cry. I’m also starting to think bad things such as, he is being pathetic, he’s faking or exaggerating, why can’t he man up a bit.
It’s also funny how his ‘flare ups’ happen on the days I have an appointment or want to go out for something. The horrible thing is there is always a way around what I want/need to do i.e online shopping, couriers who collect or get my son to pick something up.
My doctor has told me I need to walk 10 mins a day, I get “what if something happens to me”.
I know he gets anxious, he’s also worried I’ll meet someone else and leave.
But I have depression, anxiety, I’m over weight, trying hard to lose it and now the pain, I want to be outside, why can’t he understand that?

A typical day will be my partner gets up at 4am, makes his breakfast (porridge) at 8am. I get up at about 9ish as I don’t sleep well but then I clean, empty his urinal if need be, make dinner, make sure he’s ok and has everything he needs, at 3pm I make him porridge then tea at 6pm. In between he will watch films or play computer games whilst I’m left to read or sleep etc.

It really feels like he’s given up, how can I get him to bath more as I really think it would reduce him suffering from infections and his back is covered with spots and what looks like healed sores. He needs to be more active as he gets wind build up but struggles as he’s on a very limited diet.

Sorry for the long post but I haven’t been able to vent to anyone, it’s been years of build up and frustration.

Funny as I always wanted to be a carer growing up, I’m now 40 and caring 24/7 which is a real struggle, I feel like I’ve lost my life and have no income and my family have to visit me.

I would love to hear what anyone thinks about what I have written, am I being selfish?

Thank you for any comments in advance. X

Hi & welcome Sheena

am I being selfish?

I think NOT!
Carer or not a partner is a partnership it’s a two way process. It’s about sharing all that relates too.

wanted to be a carer growing u

p Being an unpaid carer for a friend or relative. Is totally different than being employed to provide care to people we do not know. You are part of a team.
Caring can be isolating and feel very unrewarded. Unrewarded by not being appreciated. If you want to cry - cry away. And don’t shy away from doing this in front of your partner. It’s important the people we care for understand. We are human and have feelings.

Your partner needs to grow up a bit, not necessarily man-up.

I would withhold the info about appointments until the last minute, and then tell him and go.

If he can make porridge and play computer games he is surely capable of using a telephone in an emergency situation - get yourself outside somewhere every day, forget about ten minutes, take a couple of hours, (I do, every day).

You sound like a slave.
Marriage is supposed to be a partnership of equals, you do all the giving, he does all the taking!
What does he do for you, no mention of love, kindness, you get the urinal! He needs to shower every day and have a hair wash because of his allergies.
We are all responsible for our own happiness, you sound very UN happy.
When did he last have a Needs Assessment from Social Services, and you a Carers Assessment. If he won’t go out, then you must go out for your hour of exercise. He needs a Lifeline pendant. Social Services can arrange that.
If you have an appointment, you must go.
It’s your choice to stay, or go. Hat is non negotiable!
The only control he has over you is the power you let him have.

Hi Sheena
Welcome to the forum!
You’re not alone, we are sure that many on here will understand exactly how you feel and offer support. Caring can be very lonely and the pandemic has made caring responsibilities challenging as many carers have been socially restricted and unable to attend social groups etc.

Carers UK are running 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.

You can find information on how to register to our online meetups at the following pages:
Care for a Cuppa: Online meetups | Carers UK
Share and Learn: Share and Learn | Carers UK
Our 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 also provide information and guidance to unpaid carers. This covers a range of subjects including:

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


Best wishes

Lisa (Carers UK Community Host)