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Working full time and caring for fiance with M.E/CFS - Page 3 -Carers UK Forum

Working full time and caring for fiance with M.E/CFS

A place for those 18-35 to chat about all things caring.
Lovely post Grace :)
Thank you for being brave enough to come forward. I hope you get as much out of the forum as I do
Hi lovely

I made an account just to say I read your original post and for the first time I don't feel alone.

I met my husband in sixth form. The thing that attracted me to him was his drive to do something to help people with his life. He was a young carer for his mum and brother.

I wouldn't say he was the picture of health. He has lordosis which causes back pain. He had a tropical bug as a toddler and the meningitis as a child. I knew all of this when I was dating him.

The problem was, he always kept his pain to himself. While we were engaged, he was diagnosed with Fibromyalgia. From then, until it got too much, he would deal with it himself because that's what he did. He cared for others his whole life.

It came to a head under a year into our marriage when we found he had dangerously low hemoglobin due to stomach ulcers. After multiple hospital visits and multiple endoscopies, he was diagnosed with helicobacter pylori which was a relief because we all thought he would get back to the guy he was before being unwell with the ulcers.

Cept he didn't get better. He would sleep all the time. He would start a job, get overworked to the point of hospitalisation. He's now on a break from working. I had a pretty exciting full time job in the theatre. The pandemic kinda came at the right time for us because it ment I could learn his symptoms with him due to being furloughed. At first we though he had epilepsy but finally after a time he has been diagnosed with multi faceted CFS due to the overlap of symptoms with his previous fibro diagnosis. This has helped him understand that it's not a bad thing to tell friends and family "no" if he feels the activity is going to set him back.

Work is now starting up again for me and he's at a place where he's volunteering at a charity shop for 2 hours twice a week. All in all he's doing much better. I understand he's going to have bad days. We make the good days really special.

It's been a hard time for us. It's been hard on our young marriage. I've had times where I've felt like I've failed for not being able to do things by myself. I've missed cues of his illnesses early on. I've not noticed some of his dark times. I also thought he was just being lazy. I had to learn to support him and have faith that there will be better days for us. I've learnt not to live in the dark thoughts that we will never have life we dreamed about. We will still be able to have a family but maybe we need some more support. I've learnt that I can only worry about things that I can control.

I'm 26 and it was a hard pill to swallow seeing my husband struggle at our young age. I really thought I had more time. I was at the world for so long because my love deserves a massive break from all that's happened to him. But, as I said earlier I have faith we will have brighter days.

Sorry for the long post. I just really realted with your post and I thank you for sharing x

Massive hugs to you and I hope you and your fiance are having better days 💞