Hello anyone else feels like no one cares.

Carrieh

Hello everyone, this is my first post and a hard one for me. I was diagnosed with Psoriatic Arthritis last year and have flare ups. When I do, I get a lot of pain and it affects my energy levels. My partner of 27 years has told me (after me telling him I cannot use my hand properly today due to me helping with a task yesterday) that I should go to the doctor if it is so bad and my moaning is painful for him (already been diagnosed). According to my son, I do not moan and get on with things. I lost full use of my hand last year too due to a severe dog bite. I work full time and do all the housework myself. I feel lost today, like no one cares, I'm a hypochondriac, I'm a burden, I'm in agony and very upset. I also know my symptoms are only going to progress. How do you handle this. I feel so alone. I only want a little support and its not there. Sorry for the negativity, but I feel if anyone will get it, someone here will and may even be experiencing the same thing. Is it time to give up on 27 years, that would be so hard too. I have cried all day at work today, and don't really want to go home but I'm also in so much pain. What are your thoughts???

Moira

You aren't a moan or being difficult but just going through a bad patch as happens to so many of us with arthritis. My thoughts are with you. It's tough suffering like this. Arthritis can affect mood and energy levels and those who don't have it don't realise it, and sometimes have to be told.

I don't think it's time to give up on 27 years but I do think you need to sit down with your partner and son and tell them exactly how you are feeling and that you would appreciate some help, especially as you have been diagnosed with a severe illness.

If there is any literature available on psoriatic arthritis give it to your partner and son to read too.

Do you have a nurse at rheumatology that you can contact? I had a brilliant nurse/practioner that I could phone if I needed to.

Good luck. Be thinking of you.

Wenwoo

Hello Carrie

So sorry that you aren’t getting the support you need and deserve, I think it’s when we’ve been the one to always do everything for everyone and then we aren’t able to. My daughter was looking after me when I was at my worst and then she spoke with my husband and explained that it was my time to be looked after and helped when I needed it. Sending you a huge hug🤗 and plenty of kisses 💋

Wendy x

Anna

Hello @Carrieh and a warm welcome to the community,

First of all, you're among friends here who do understand at least some of what you're going through. It's hard for anyone who doesn't live with arthritis to fully understand the daily challenges that most of us face, but we really do.

Although your partner may have spoken to you in frustration, they are quite right that if your pain is affecting your daily life then perhaps should go back to your GP or your rheumatologist to discuss it with them. You don't mention what medication you're on but it might be time for it to be reviewed, or maybe you could be referred to a pain clinic where they will look at alternative treatments to help you.

If you want to read a little about ways you can manage pain, I've put a link below that might give you some ideas :

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

If it would help to talk to someone, our helpline is available from 9am-6pm each day. They offer a listening ear and supportive advice. It's free to call and their number is 0800 5200 820.

Above all, be kind to yourself, and please keep in touch.

Anna (Moderator)

Carrieh

Thanks everyone, it is frustrating as most of the time I’m okay and function well. It’s the blips he can’t handle, I think he does need to be told it’s my turn to be looked after once in a while. I feel a little better today it’s hard when you are independent too, I don’t like asking for help, so when I do and get the comments back it makes things worse.

Woofy

Please don’t apologise.

Sorry you are having a rough time. Start asking for a bit more help. You are like me I have always been independent, the can do it all kinda gal. Suddenly two years ago, it all changed. It has taken me a long time to adjust to living with Arthritis. I reckon I have been through every emotion. Recently I have been asking my husband to help me with certain tasks.

I hate asking him, but I think it’s made him more aware of the pain I have. When I was struggling on not asking for help, he just took it for granted I was coping, .I agree with others, talk to your family, print off the info from here, and show them.

make sure you rest in between tasks, Be kind to yourself, it’s not your fault. You didn’t ask for this to happen to you.

Airwave!

OK, our emotional levels will always trailer along behind our physical state so you may have a flair up and a few days later you feel low for a while. Because we are human we cannot feel ‘high’ all the time, our emotions will vary and to some extent we must accept this as to be human.

What we must guard against is when the feeling carries on for so long and so low that the feelings are not helping on a day to day basis, time to talk to your GP.

Apologies if this is teaching you to suck eggs, we often get so wound up that we don’t think objectively.

pits a grin, honest!

p.s. We have been together for 49 years and we still get it wrong sometimes!

Trish9556

Hi @Carrieh

Firstly never apologise on here when you have a need to let off steam. We all do it and we all know and can relate to what each other us going through.

I've been with my husband since 1972 and he's seen me through some horrendous times with my health and annoys me when he wraps me up in cotton wool and stops me doing stuff. By now though he knows that I'm having a really bad day if I ask for help. I'm a typical independent stubborn Taurean who likes to do stuff myself.

You could write a diary of how you're feeling on good days and bad days and leave it out for them to read it?

I have a traffic light system and colour code my days accordingly. Today will be bordering red as I've had no sleep with pain. Devise your own system and tell them how it works, agree somewhere you can note what colour the day is - even a crayon mark or sticker on a calender will make them aware that if it's red you need help.

You could also suggest that they sign up on here to get support as your support?

Love n hugs

Trish xx