Feeling Low and Living with Arthritis

Sheelee

I've been feeling down recently, which we all do. But it's how arthritis limits options for pulling myself out of myself. For example, a stroll along the riverbank and a coffee is no longer a real option.

Also, do people worry about friendships with newpeopke and how much they will have the patience and understanding to take account of this thing called arthritis? I would love to be in another relationship but I think about how much people will be bothered. 😒

Mike1

I find that a lot of people do not understand what we are going through, including GPs, as outwardly we look "normal", if we had a leg or two missing then that would be different. Since I have been restricted to my wheelchair I have lost lots of people I used to think of as friends and on the rare occasion that I am out and about in my chair I get blanked by people that I have known for years.

stickywicket

It's not easy. I think it needs more thought than one might naturally give to such things.

If a 'stroll along the riverbank' is important, what about a disability scooter?

If coffee (with friends?) is important, can you ask them to your house? Or, just meet up somewhere? I think true friends always respond whereas people with whom we had a shared interest which is no longer possible, might well not.

I've learnt, over many arthritic years, that it's important not to dwell on what is lost but to take up the opportunity of new interests. That led me into Riding for the Disabled, being on the committee, making new friendships - often with other disabled people but always with those who knew and understood disability. Watching my son's cricket led to my doing reports for the local newspaper. The cricket club members were very appreciative. Feeling valued is so important.

I've found that any kind of volunteering usually leads to mixing with kind, thoughtful people. I know I've been very lucky and I hope you can be too.

Sheelee

Hi Mike 1,

What the hell happened to humane and care? I just find it unbelievable that people could be so callous. Some I accept may find it hard to find the words to say and worry about making a hurtful blunder, but not all.

So sorry.

Sheelee

Sheelee

Thanks Stickywicket.

I have tried all of those and it hasn't necessarily worked. Though I like I tend to dwell on things when I'm a bit down.

I also wonder if I need to change my expectations of others and friendship in general.

I have got plans to move forward, and some things I'm already getting in motion. But I think I need to sort myself out in relation to some things.

Aj_x

Hi @Sheelee

I can see this isn't your first post, so a welcome post wasn't appropriate, but i just wanted to say that I know exactly how you are feeling. Having RA, it not only determines you as a person, but it also determines how your friends and family act around you and see you.

They can be walking on eggshells and always frightened of saying something wrong which might upset you, or they could be just your normal friends that act the same way which would be fantastic.

When you're thinking about having another relationship, we (people that are ill) genuinely care about everyone else, and how they are going to feel about it. You don't think about yourself and your feelings. you need to for a change because whoever you get with will love the person and it doesn't matter if the illness comes with them. Not the illness and the person just tag along!

Stay Safe & Take Care

AJ_x

stickywicket

We all dwell on the wrong things when we're down, @Sheelee . The trick is to recognise it for what it is and distract ourselves with something we love - preferably not long walks, though😉

If you're making plans that's good. And recognising a need to 'sort yourself out' is a first good step. We all need sorting from time to time. We're a bit like housework😁

@Aj_x I couldn't - hopefully kindly - disagree more. Neither I nor any of my friends with arthritis would consider it determined us as people. Definitely NOT😱 It does modify our actions and makes us take decisions we might never otherwise have taken but let's just say I merely HAVE arthritis. I AM much more. I really don't mean to sound egotistical but it's a very important point to many of us.

Certainly, when I was first diagnosed, aged 15, my Mum especially did treat me differently. She tried to stop me doing things that she was afraid would make it worse. As a mother myself I can see her point of view but you can't be defined by a disease. My friends were great and supportive. My husband and sons have never known me without arthritis. Small children are wonderful. Far from 'walking on eggshells' they simply exploit their advantage to the full😀 It's exhausting, natural and normal.

I'm sorry but, here's another thing. You write "we (people that are ill) genuinely care about everyone else," Oh if only that were true! Wouldn't life be wonderful? Personally, I find people who are ill are just like everyone else - some kind, some mean, some compassionate, some concerned only with their own problems. But I do think that pain is pain is pain whatever form it takes and, if we care to act on the insights it can give, we can use them to help others. Do we? Sometimes some do.

I really do hope I'm not offending you by - I hope - kindly disagreeing. I've just seen so many on here indignantly asserting that their disease doesn't define them. i felt I had to speak up on their / our behalf.

Sheelee

Thank you to thank everyone who has responded to my post. Its interesting the way different people react to having this condition called arthritis.

Recently, I have started regularly using a stick. I found it helped to "spread out" the compensation other parts of my body take on because of the reduced use of leg. The reaction from others has been mixed. Some people are more considerate; others are just irritated by the fact I may be in front of them on a busy street, but can't move very quickly. And I guess, there is the indication of how I need to accept there will be good and bad experiences in rebuilding a social life again. I'm not great at taking the hits, but I know I'm not unique in that.

I had a similar hang up about "if anyone would want me" following a mental breakdown several years ago. It was particularly hard when I knew I was really still very fragile. I thought people would think me a burden and a no no. So, though I'm having to go through this type of emotional thing yet again, in relation to the arthritis, at least I am a little more experienced at how to manage the situation.

I suppose it is different in that I have had to modify my leisure activities e g I swim now, where before I relied on the walking for the basis of my physical and mental well-being more. And I have made some nice friends. But (Ladies only please!!) I think about sex life as well as social outlets. And those are added dynamics to this condition that didn't necessarily exist in relation to the issue with my mental health.

I've never had a great sense of confidence in my looks anyway, so having a wonky leg (plus the physical restrictions that brings), adds to that uncertainty. But any support is so welcome. It makes me feel less alone.

Thank you 😊

Lilymary

I hope you don't mind if I take this to the next level, and I hope you won't be offended or think I've overstepped the mark, but this booklet by VA may offer you some encouragement that having arthritis doesn't mean you can't have an active love life.

https://www.versusarthritis.org/media/23155/sex-and-arthritis-information-booklet.pdf

Forming relationships is tough whatever you're going through. I've come to the opinion there is no such thing as a "normal" relationship anyway, even less a "normal" marriage. Every one of my (relatively few) relationships was completely different. That any of them work at all seems to me miraculous. I always felt being single was greatly preferable to being in a bad relationship.

But while you're waiting to meet someone you do click with, make sure you're doing things that you enjoy and that engage you. That may be the way to find someone with shared interests, or at least make new friends. As you're already finding, what you can now do is changing, but for everything you have to give up because it's too difficult or painful for you, try to replace it with something new you enjoy. That way your world doesn't feel like it's shrinking. And then even if the Brad Pitt lookalike doesn't turn up and sweep you off your stick, you've still had a life that you enjoy. I didn't marry till I was 57, but I didn't put my life on hold while I waited, and even if Mr LM hadn't hoved into view, I would still have had a reasonably full life, with no less highlights for staying single.

Sheelee

Dear Lilymary,

Thank you so much for the info about the booklet. I've only just glanced it so far, but it looks really useful.

Like you, I decided no relationship was better than a bad relationship, but it doesn't stop the Hooe of meeting someone who is worth sticking with.

I have had a nasty habit of staying with poor relationships, so I decided I was never going to stay in a relationship again, purely because I didn't want to be alone. I meant bad relationships with men, and friendships too. So I forced myself to do things that I enjoy alone to that point where I was comfortable with it. And generally I have achieved that, even up to several 3 week holidays abroad alone. But also Athletics meeting weekends, theatre, Xmas Day etc. However, there are always those moments when things just catch up with me and that is usually following some bad experiences, which is what has occurred recently.

What I have decided is that I'm only going for companionship if I reply to ads in future. I'm fed up with getting someone with bigger relationship issues than I have, and end up being a victim of their unaddressed/acknowledged issues; and saying "friendship first", and someone therefore thinking that takes 5 minutes, now can we move on. No way. And for me it is primarily companionship. I have a lot of interests. What's missing is having someone to enjoy them with (or people).

Im having a real review of what I really want; my approach and expectations towards friendships and relationships; and being clearer about what they are with others. Not easy. Loads of tears because, of course, much of this is a reaction to bad experiences, but I'm feeling a lot better by doing this, hard as it is.

Thanks again Lilymary,

Sheila

stickywicket

I think that @Lilymary's advice is good (as usual😀) and that what you are doing is brilliant and deserves success in the long run. I love the fact that you've used past problems to re-think and enable you to deal better with present ones - even the arthritis. Go for it and good luck!