"Just" arthritis

Boomer13

I'm quoting my sister in law at a recent visit.....She asked if my health problems were "just" arthritis. I don't think she meant any harm, but it was an example of huge misunderstanding by the lucky non-afflicted.

Having "just" arthritis kept me awake and thrashing in agony all night despite taking morphine and copious muscle relaxants. All the result of a very mild, half-hour chair yoga session. Only my second session, and the first had a similar but milder result. I can't use the language I would like, but I am so fed up!!!! I can hardly get myself out of bed this morning and this is after 10 days of prednisone. I thought I had been doing well this week and had set myself a goal of going for a small walk this weekend. Ha! Well, it's 'just' arthritis.

stickywicket

Oh Anna (((())))

We can ride the – very many – bumps when things are progressing OK but, of course, people say these things mostly when they're not :roll: .At a guess I'd say her view of arthritis is that it's something old people get, often in just the one joint and which can essentially be 'cured' by a replacement knee or hip.

You are in the unfortunate position of not only having an auto-immune arthritis but also having one that seems determinedly meds-resistant. If you have so far managed to avoid any joint deformities that's even worse in terms of getting understanding. People understand what they can see. If they can't see I t, it puzzles them. I can only suggest you give your s-i-l some info on it – possible whether she wants it or not

Boomer13

You're exactly right, Sticky. I'm going to start a folder of info that I can leave out for visitors to read when they are bored. Or, maybe I could do a quick, informative slide show

I am at a disadvantage because any deformed joints are in toes and fingers and not obvious. I hobble and limp but at times I still walk pretty normally. Plus, I still have my athletic frame from all those years of being well-exercised and strong. I'm sure I'm still coasting along on the benefits of that, even now. I can see why people are in disbelief.

It would be hard to design a more devious disease to inflict a human with!

barbara12

Anna its so hard not to say anything to people,I have lovely neighbours..and even they say I'm surprised you are still using crutches after your THR..or when will you be over the op..I used to try and explain that there are other joints that have joined in..but they look bemused..suppose they don't have the pain..hope you get some relief very soon x

Slosh

I'm lucky in just having OA in my neck, or at least that's all I've been diagnosed with so far, but no form of RA. It's still frustrating though when people say things like that, or when will you be better etc.
I bought two great mugs for work, one says "My disease must be doing wonders for my appearance, everybody keeps telling me how well I look."
And the other reads " Please be patient with me today. I am hurting a lot."
A friend of mine reckons God got it wrong when it came to a visual sign of pain and we ought to change colour as a sign, she reckoned blue would be good and the worse the pain was, the darker the colour.
I'm so sorry you're having such a rough time at present and lack of sleep and long wakeful nights are not good companions to have to deal with on top of everything else.

Starburst

In my more bitter moments, I want to clonk them over the head and tell them it's "just" a bash to the head.

I think the word arthritis for those who have the autoimmune kind is a misnomer. It's a description of one symptom and a misunderstood one at that.

I'm sorry you're having such a rough ride, Boomer. Here's to hoping that you achieve your goal. It's your own personal mountain and your achievements are huge.

dreamdaisy

My favourite mug (which belonged to a friend) was emblazoned 'I only have one nerve and you're getting on it.' Buy it and use it when she visits, ensuring she can read the slogan.

This is par for the course, Anna, people don't understand because they lack knowledge and information but don't realise they do. They wouldn't dream of saying 'It's just cancer,' to someone but, because arthritis is so common, people don't understand its impact or complexities. Hopefully one day she will find out and then you can similarly comment. 8) DD

stickywicket

My guess is, she meant “Is it just arthritis or is there something else going on which you haven't mentioned?” Which, in a sense, is reasonable because I think you've wondered that yourself. Probably not the best way to phrase it though

No, I guess the slideshow would be a really bad idea All we can really do is answer people's questions as fully as they wish (Some don't wish for much info) but it's a tricky one because we don't want to give such personal info away to all and sundry. In front of my mother and sister I always pretended to be as well as possible because otherwise they'd want to take over my life and have me as a couch potato. In front of my real friends I didn't need to say anything because because they noted silently how I was and knew me well enough to either let me struggle and achieve or just step in unbidden to help as they might with anyone else, not making anything big of it.

Slosh

In front of my mother and sister I always pretended to be as well as possible because otherwise they'd want to take over my life and have me as a couch potato. [/quote]

I'm with you there Sticky. My sister already has me down as an invalid, thinks I'm "brave" to continue working, and is dropping hints about my selling my house so I can give up work, and move somewhere cheaper, out of London and closer to her!

daffy2

Perhaps the answer is 'No it isn't', and a swift change of subject?
My much loved paternal granny always slept badly and had got used to coping but found it irritating away from home to have people brightly ask at breakfast 'Did you sleep well' knowing that such folk didn't really want an honest answer unless it was 'Yes'. Her solution was to say 'Thank you for asking' and start talking about something else.
I use variations on this at work so that I can let colleagues know that I might be less than good but without depressing/boring them(and me!) with the details.

Boomer13

Thank you for your replies. Sorry not to be back sooner but the after-pain from my very minor chair yoga has kept me from anything else. I really haven't had anything like that since a bout of myositis. It was not joint pain for a change, but I'm wondering if it's from enthesitis :?: or, my neuromuscular problem :?: These are really just rhetorical questions, I can't see my GP to ask because she's booked solid right now. She may be dreading seeing me again as I lost it in her presence last appointment. Said things like: I was totally fed up and wanted my life back, etc, etc. I'm normally fairly composed :shock: I just am not sure my docs get it how difficult it is for me to do much of anything, even though I may appear to be managing ok.

dreamdaisy wrote:

'I only have one nerve and you're getting on it.'

I love this, DD. I'd like it emblazoned my front window. 8) :idea:

Starburst wrote:

It's your own personal mountain and your achievements are huge.

A good reminder, Starburst. It really is your own, if somewhat lonely, journey. This makes me appreciate all of you so much!

Slosh, when people tell me how well I look I say: I'd trade looking well for feeling well anytime and then change the subject. It took a long time for it sink in that people not afflicted with any chronic health issues really can't understand what it's like. I try to be understanding, but sometimes I lose it.

Thank you Barbara, it would be just as well if people said nothing sometimes. It's harder knowing what they think, I believe! I finally have learned to resist the urge to say anything at all about my health. I say I'm fine, or the same, and change the subject.