Carer for my civil partner

Tell us a bit about yourself here.
I've just joined and wanted to introduce myself and I guess let you know a little about me.
I'm 19 years old, married to my cousin who is 29. Our families lost all contact with each other after the death of our grandmother, we didn't see each other again until 14 years later. At that time we spent a lot of time together and eventually we entered into a relationship, not long after I moved in and became her carer.

My wife (I hope this doesn't make anyone uncomfortable) suffers from myalgic encephalomyelitis commonly known as M.E and Fibromyalgia, as well as this she suffers from barrett's esophagus and interstitial cystitis which will this year see her have a bladder diversion and complete removal of her bladder. At the time when I became her carer she had M.E but the other conditions came afterwards, I'm afraid I was naive in thinking that being a carer would be 'easy'. I thought I'd be able to look after her and continue my college courses to get a job to support us. Unfortunately it soon became clear that it would be impossible to juggle it all, at college I was distracted by worrying constantly whether or not she'd fallen or somehow injured herself. I burnt myself out quite quickly, fell ill with a virus which took me a total of 3 weeks to get over and by that time I was so far behind in college I made the decision to leave.

We've struggled on for 3 years with family not understanding my partners disabilities, with friends disappearing and reappearing as they like and with medical proffessionals judging us on our sexual orientation, consequently our family relation, my age and we've constantly come across many who don't even believe in M.E and Fibro being disabilities.

I'm hoping that by joining this site I can feel a little less lonely especially with my wifes bladder diversion/removal coming up as she'll be in hospital for 2 weeks, i'm sure I'll be a little bit lost after hospital visits and coming home to an empty house will make it somewhat worse. Hopefully as well I'll be able to help a little. Sorry for such a long post!
Welcome to the forum Image
My wife (I hope this doesn't make anyone uncomfortable) suffers from myalgic encephalomyelitis commonly known as M.E
We are a very friendly bunch on here and we don't make judgements. You are not the only one here in a same sex relationship (look around the forum you'll find some threads) and I have two family members with M.E.

Join in any "conversation" on here, "Roll Call" is a good place to get to know people and the "fun and games" section is a good chill out place. There are also two Members' only sections aswell.

Look forward to seeing your postings around the forum. Image

PS - shall we call you LJ or Lilley?? Image Image
Hi LJ and welcome Image
Join in anywhere and ask anything you need to know, if we don't know we'll know where to look Image
Thank you very much for the warm welcomes Image I'm very glad to have found such an accepting forum, unfortunately i've had a few bad experiences on other forums.

I'm looking forward to participating, helping would be great of course but even if I can't offer advice I would love to listen (or should I say read!) and offer my support.

Jane and audrey, LJ is fine Image
Hi LJ?...a very warm welcome to the forum from me too!

Bell x
Hi and welcome to the Forum.Hope you find it useful and fun. Image Image Image
Welcome from me too, you are a carer, that's all that matters here. My first reaction was that you have a huge amount of responsibility for someone so young. You don't mention whether or not you are getting any help - before your wife comes out of hospital make absolutely certain that everything you could possibly need for her discharge is at home ready and waiting for her. In my area, free post op care is available to anyone after major surgery, which is really great, make sure you know what is available in your area. Major surgery, the stress, etc. makes anyone tired, this will especially be the case for someone with ME. Make sure you know what post op physio advice has been given, and offer every possible encouragement. After I had my kidney out, I was advised to walk every day. At first, I walked like neandearthal man, but my husband insisted in dragging me out, whether I wanted to go or not! It certainly aided the healing process and reduced the swelling, making me feel much more comfortable. Has anyone suggested a Lifeline - a pendant worn round the neck which can summon help - this would mean that you could go out without worrying so much. Be sure to ring / email the Carers UK helpline for advice about benefits and assistance. Hopefully, when your wife is a bit better you will find another way to study if you want to. Hope that helps in some small way.
Welcome LJ! Great to have you 'on board' Image
Thank you for the warm welcomes Image

bowlingbun - in regards to help, well emotionally the family is behind us but as for practical help well that's pretty much non existant. With my wifes last op (she had a suprapubic catheter fitted) her mum and a friend helped me out by taking me shopping, other than that though we are well and truly on our own. At the moment we have the doctors updated on every new medical condition/complication and we have the district nurses practically on speed dial. We are meeting with the stoma nurse (a stoma is a piece of bowel sitting on the outside of the stomach) who will offer an extraordinary amount of support. It is from her that we will found out post operative care and all that will entail. I hadn't heard of the Lifeline but I will definitely look into it, I was worried about being able to leave for short amounts of time like popping to the shops, so that would be a great thing to have. Thank you for the help and suggestions, I really appreciate it Image
Hi and welcome