Loneiness and RA

[Gez-1311]

Hi,having just recently found this site and after reading some of the great and enlightening posts, just wanted to ask, is the feeling of loneiness always going to be part of this?.Outside of the pain and tiredness, I have changed from a social and people's person to a near recluse who has little interest in socialising and will make any excuse not to go out when asked. Any words of wisdom on this.

[allanah]

Well I don't know if these are words of wisdom but we have all been there.

So what I did...

Talked to NRAS , got a volunteer to talk to , she became my best friend.

Get a mobility scooter, you can go out much more easily and even just for a coffee in your local village/ town

Use your community care people, mine provided a volunteer to go for coffee with and transport to and from hospital appointments

Talk to your gp about, well I had it, depression and get some counselling to help you cope with this change in your life

Ask people to yours in the afternoons , they can make the tea

Ask why you are in so much pain so your not going out, maybe your drugs are not working or your pain relief is not strong enough and needs changing.

When your illness gets more under control it gets easier.

Try to stay positive... if possible!!

[Gez-1311 in reply to allanah]

Thanks Allanah for your kind words and advice. Still relatively new to this change and am honestly struggling with it but will take your words on board and ask for some help. After finding this site, I realise that I am not alone with this.😀

[allanah in reply to Gez-1311]

Like Philip says you need to keep going. It will get better. Call in a few favours. Phone a real friend xx keep talking here x

[Philip in reply to Gez-1311]

Well Gezza, lol jogging can be fun but not for the likes of us, do you have friends near to where you live or can you get into town, crazy life we lead, one thing that really really cheers me up? There’s nowt better than my scooter, lol. You can see people right down the road, they are looking to see if I’m out lol the old grannies and the old men with Andy cap on his bonce, haha, they climb trees and huddle in the bus shelter, always fun and can be even better on the way back . Lol.

Philip.

[Philip]

I have to yes, the man from Delmonte him say yes, lol I find that most illnesses that include PAIN will render us loners, because they “ friends “ lol, people will get peed off with us, always moaning and groaning in pain and I don’t think they can understand and don’t really know what to say to us, then you get THE REAL FRIEND who will put up with us moaning and groaning and now and then tell you to shut up and stop moaning lol but still show you the care and love us.

Philip.

Ps, one way to stop pain is, a 1lb of wacky backy and bottle of 🥃 whiskey, granted the pain will come back lol. Start all over a gain. Lolsummat like that.

[Martinilady]

I have just completed an 8week course on Pain & Fatigue Management at the hospital 1hr 30mins a week. Organised thro my GP. People in the group suffered with acute life changing pain (not just RA). It was CBT which I did learn abiut when I was counselling. But I found it very helpful about mind over matter & just how strong your thoughts can control feelings etc. Because I became exactly how you described ie less sociable, avoid spending time with friends & family. Lonely - I have just retired after working since I was 15 (& now 67) so I had a lot of adjustments yo contend with.

But your mind & thoughts are the strongest part of helping to deal with this blasted disease.

[Fra22-57]

With me it is.my friends are ones who are too busy but ok if I can get to them which I can't until hubby takes me when they are free.children only visit if asked for tea and then will cancel was lovely when I could look after grandchildren.I go on Internet browsing and answering questions like here then don't feel so lonely.

Spend alot of time at my sisters when she isn't at work and that is lovely.

Live for holidays.

If you live in a town I think it's easier to get about and stop n chat but not if in a sleepy village.

Dont refuse offers to take you out as they will stop asking Gez-1311

[Witness2]

I really feel for you and what you're experiencing right now Gez and agree with much of what's already been suggested. All I'd add is, check out with people if you can, what's changed - it's too easy to assume it's 'all us'. Others react to our situation and in my (long) experience of this ,*•~<^Y disease, I have realised that it's not necessarily something about me that drives them away, it can be stuff about them, such as feeling 'guilty' that it's you and not them; feeling embarrassed by negative thoughts ('you're so boring now, can't do anything together anymore'); simply not knowing what to say or how you'd receive what they say. It's pretty fraught for friends and family saying the 'right' thing. But it's normal, just as your wish to withdraw and lick your wounds is normal. RA means a life full of adaptation and if you examine what you feel you might realise that actually you're angry. I certainly was but started using my angry energy, it can be used constructively. And guess what, I felt better and some of my friends came back. Yes, get a buddy via NRAS, go to group meetings, read the Emotions book and talk to us here. You can still have a good life - yeah, really! X

[dippyd09]

Hello, I too at the start felt very isolated but realised quite quickly I had to try. I have always been a very sociable person and love company. I am possibly just extremely fortunate as I have a wonderful group of very thoughtful, helpful friends, I know I probably couldn't take part in any socialising if not for their support. I do agree a mobility scooter is a great boon and worth looking into. I sing in a choir all be it a fairly small group each one of the other members has lent me a hand as without their assistance I couldn't do it. Hopefully you will find a group of like minded people doing something you enjoy where the others will help when needed. I think it's important that you get out amongst others. Could you have a look at the library to see what is going on nearby?

[Hels1989]

You sound just like me my love. I avoid leaving the house when I have to. I hate what the disease has made me become. I'm not on the right treatment yet but I'm hope that when I am I will feel a little better.

I hope things get better for you. Isn't your medication working for you? X

[Rebecca5]

I don't have any words of wisdom for you but I know how you feel as I'm the same. People thought I was anti social but I'm not I'm just tired/exhausted. I've to make a decision about tocilizumab but I'm a coward.

You take care & sending hugs xx