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This is the first time I have written as a carer - Carers UK Forum

This is the first time I have written as a carer

Tell us a bit about yourself here.
Hi I am Tracey and a carer for my girlfriend. We have been together 26 years but for the last 22 years she has been plagued by a neck injury that just seems to get worse and worse. For the last year she has been in bed all day more days than out of it and when she is up it is seldom to get further than to spend a few hours on the sofa watching tv. We have a very limited social life and none of my friends seem to have any idea why i get so down sometimes. But I am literally watching the love of my life crawl through the days. The neck problem makes her nauseous most of the time and causes her to vomit regularly some days. She is in pain ALL the time. Sometimes she can't read, watch tv or even follow a conversation. She is a very intelligent woman and this brain mush aspect of her illness is one of the saddest to witness.

I have to work but I only work mornings and try to do as much from home as I can. But some days like to today I just can't face coming home. I want to do something for ME sometimes, you know? Like go to the cinema or the gym or just sit in the sun and write. I used to be an artist, correction I am an artist, but I haven't made any work in this last year because my partner has been sleeping, or more often not sleeping but just laying there in pain, in my studio. Last week, I packed all my stuff up and made it into a full time bedroom for her. It is a nice room but it was a difficult thing for me to do emotionally. It felt like I was putting a part of me into storage.

I am reaching a point where I need help. It is all getting a bit much. I can't remember when I last had fun - how sad is that? So, here I am reaching out on the internet and hoping someone will listen. That is all I need really (apart from a cleaner, a payrise and a holiday! ha ha ha) just someone that understands how hard it can be to watch someone suffer day in day out. thanks for being there.
Hi Tracey and welcome Image
We're good at both listening and understanding!
Welcome to the forum, don't feel guilty about wanting ME time. Long term caring is tough and you must have a break at times, it's not selfish, it's vital. Are you getting any help at all? If not, be sure to ring the helpline for a check on what you might be able to make your situation a bit more bearable.
Hiya Tracey and a warm welcome to the forum. Being a carer is hard, have you talked about the way you're feeling to your GP, have you had a carers assessment to assess your needs.
Roll call on carer to carer is where we meet up to discuss how our day has gone, our virtual coffee time.

Hi and welcome to the Forum.Hope you find it useful and fun. Image Image Image
Thank you for the welcome. It is lovely to be embraced in this way. I will look around the site more and find out what help I can or can't get and how to make it happen. In all honesty, I think just admitting that I need it is a good first step. Now on to step 2 - assessing what help i need. Thank you for your suggestions and the warm smiles. Image
Hi Tracey and a warm welcome to the forum from me too. As already suggested, I think a Carers Assessment is probably a good starting point for you and your caree. Hope this can be organised and that perhaps in the not too distant future you can put that talent of yours as an artist back in to use!

Bell x
Hello and welcome from me too Image

Caring for someone we love very much requiries a degree of self-sacrifice. That is, the sacrifice of self. Thats a loss that can really hurt. Sometimes we miss time to be ourselves. Sometimes its almost the loss of identity that we suffer. When we give something of ourself, there is a loss. This can feel like a gentle sadness, or it can make us feel angry and resentful. All perfectly normal, if its any consolation. Its what happens when we care for someone we love. And yes, it really is so very, very hard to see someone suffer and we can feel almost helpless. Of course we are seldom helpless. We can always make a difference to the lives of those close to us even if we can't perform miracle cures.

It sounds like things are moving out of balance for you, regarding your own needs and that of your partner. Sounds like you need to feel more in control of this 'balance' and I guess the first step is to maybe think about what a better state of affairs might look like. If you are not sure, check out your feelings when thinking about any changes. Maybe start with considering what a better state of affairs might feel like ??

It's good to have you with us, Tracey. Hope you can soon begin to take hold of the reins a bit firmer and can rekindle a little of your own life, without never loosing sight of the love you share with your partner. Its not easy of course. None of us find it easy. But its what we try to do.

With all good wishes,

Hi Tracey.
My names Lauren. This is the first time I've written as a carer too.
My girlfriend was diagnosed with fibromyalgia back in october.
Though she has had the problem for about 4 years now.
Every day is different. Somedays are a struggle. Others aren't. When things are really bad we don't do anything. I feel bad because I like to do things and I get bored and frustrated that we can't do anything.
If she's having a good day and we go out she's usually has to spend the next few days in bed.

She also has mental health issues so she leans on me a lot and sometimes I don't get any alone time.

Gosh I feel so bad writting this.

I have joined this site as she keeps telling me I need to talk to someone too so thought is give this a try.

Dear Lauren,
Please don't feel bad saying how life is for you, it is important that you acknowledge your feelings. Lots of people here have drifted into becoming a carer so gradually that we haven't realised what is happening. If you feel that you need help or advice there are lots of people here, some will have faced the same problems and dilemmas. Understanding that you a now a "carer" is an important first step.