Owning your arthritis

Boomer13

I've read about this concept in the realm of other chronic illnesses and have been thinking about it myself as I contemplate starting biologics (or not). I'm preparing myself for the reality of my current situation on triple DMARDS being as good as it can be.

Have you ever reached a point where you decided you own your arthritis and all it brings with it? What was the turning point where your illness or OA stopped defining you?

(Sorry, this is not very Christmassy, or joyful :xmas_cheesygrin: )

hileena111

Hi
No I'm Hileena, Wife, mother, gran, Avon representative etc and just happen to have arthritis
It's not "my" arthritis.
I think it was an arthritis course that made me realise I should be master of it ....not the other way round
Sorry if this doesn't make much sense but it 6.30am and I'm up 'cause I have an early hospital appointment not because I want to be up.....so fingers are working but the brain isn't
I'll be back on later
Love
Hileena

stickywicket

I'm with Hileena 100%. I am many things: I merely have RA. It has never defined me. It never will. I live with it. It modifies my behaviour and it has modified my body enormously but, if I felt it was determining who I am, I'd despair.

I am (it sounds massively big-headed but, if we're going for the truth) far more than my arthritis. It can do many things to me and take many things away from me but it can't alter the essential me, unless I give it permission. Who I am is not defined by how far I can walk, how long I can stand, how much physical stuff I can do or how straight my limbs are. I, and everyone else on here, am/is/are much much more than that.

I've never quite grasped the – to me, modern - concept of 'owning' something but, insofar as I do, as regards arthritis, I don't own it and it certainly doesn't own me. We co-habit. It's an uneasy truce which has been going on ever since I realised that fighting it tooth and nail only encouraged it and that, actually, it had some valuable lessons to teach me.

For my money, anyone who wants to be happy in life, whether arthritic or not, must learn to find all the good things about where they have to be. (Maybe think Nelson Mandela and Robben Island) It's no good looking back and trying to re-capture what was. We must look forward and see the possibilities. There are always possibilities.

Kittkat

I feel I have accepted arthritis but i feel it doesn't define me and I don't feel I own it.However I felt much better when i accepted the illness. It took me about 2 1/2 years to stop being so angry about it all.Now I don't like to give it much attention if that makes sense. I don't talk about it when i am out as I don't find it that relevant unless I am physically unable to do something. I treat myself as a 'normal person' as much as I can. Even though I am hopeful I will improve in the future I am ok with being in pain and don't like to dwell on that really as it gets you nowhere. :xmas_cheesygrin:

barbara12

I was diagnosed around 4 years ago now...and some days I think I have accepted it but then others it gets the best of me...but I plod on that is the only thing I know...wishing you well with your treatment you must be so nervous but we are all here when you need us :rudolph: xx

Toots

Hugs Anna x

I think what you're talking about is acceptance. I know you've suffered for a number of years but are only relatively recently diagnosed (compared to many here). I can't answer your question, because I haven't accepted anything!! I keep hoping that my meeting with rheumy tomorrow will clarify that it's something else entirely and fixable. Like, properly fixable. Or I'll just wake up one morning and it'll be gone. How great would that be? Yeah, most unlikely, but it doesn't stop me wishing and I'm nowhere near as far down the road as you are.

I think it's down to everything we have to give up, you know? You've been so active and giving up doing the things you love has got to be so tough. Accepting horse riding is no longer a viable option for you? It sucks beyond belief. I'm having a hard time considering that I may not be able to do the things I enjoy. And how that is going to impact on life with my OH who is yet to see me like this in person.

I'm sorry, I seem to be bouncing between you and I here lol. And waffling to boot. I guess what I'm trying to say is that it's totally understandable if you haven't accepted the situation but I hope that you can make peace with things when the time is right for you. And then let me know how to do it ;-)

Huge hugs. And more hugs. And ... hugs x

dachshund

Hello Boomer
when my sister and I were small are parents said you were born like this
so make the best of it you can. we have cerebral palsy so to us life was normal. arthritis has slowed me down and I sit down more but I've enjoyed my life and I still do I just have find ways of doing things like everyone else.

dreamdaisy

I am in total agreement with Sticky and Hileena. I am who I am and I have arthritis. So what? Yes, it's changed the way I live, yes, it's affected what I can do, yes, it's challenging and demoralising from time to time but it will not get the better of me. Live to learn and learn to live. That makes sense to me. DD

daffy2

I struggle somewhat with the concept of 'ownership' in the context of something like arthritis because to me it implies some sort of choice - and that is what we do not have.( I am not going to get drawn into the murky world of defective nutrition, lifestyle etc whose proponents say that we do have a choice).
In similar vein to the other posts, some years ago a TV programme with cancer patients included a comment from one person who said 'I have cancer, the cancer does not have me'. This was partly about not giving up the fight to beat the disease, but more about not being defined by that disease, and I find that a helpful idea. I have OA, but I also have 2 children, a brain, other medical conditions, gardening skills, good friends....etc. Arthritis is a part of me, not the whole.

hileena111

Hi Daffy
I agree with you about arthritis being part of you not all of you
BUT do disagree about not having choices.....we always have choices whether we have arthritis or not.

The first example that comes to mind is pacing yourself
If you want to go out and do something you know you will really enjoy but you will suffer for it the next day........it is worth it.

If you do a lot {that you don't particularly like} and suffer for it the next day......that's not worth it.....in my opinion

So we have a choice.....go out and enjoy ourselves and suffer the next day or stay in......that is choice

Love
Hileena

Boomer13

barbara12 wrote:

but I plod on that is the only thing I know.

Yes Barbara, that is what I do too. My life has become more of an existence now, so I guess it is defining me to some extent. I consider this temporary until I work out a better approach.

It has been helpful to think about not starting biologics because they are just one more carrot-on-a- stick that may not improve my problems, and in fact, may make them worse. Regardless, I need to learn to live within my current capabilities and ditch having inflated expectations of improvements. I didn't even realise this waiting-for-meds-to-work was affecting me so negatively.

Thank you all for your replies. It's a very helpful discussion.
((()))Anna

grandadpaul

I am still the person i was as a teenager.
Yes some days it gets me down. i curl up with a hot water bottle and think why me.
We all have these days.
My wife tells me to now work part time, but i cannot, because inside my head i am superman
I can run as fast as Usain Bolt ( but just cannot be bothered today! )
Paul

villier

I am lucky I don't have any where near anything like the Arthritis that most people have but I do have chronic pain due to a neurological condition. I spent four years trying all the neuropathic drugs under the sun which none worked and my condition was getting worse(at one point I had nothing). I was lucky I was assigned to a great pain nurse and doctor who taught me to accept what I have and come to terms with it. I now get intravenous treatment every three weeks which helps with the pain and I dip in my third week, then there are the flares sometimes in between. Like Hileena it is my choice what I do regardless whether I suffer the next day or not. Anna I know nothing about the meds you guys take but I sincerely hope you can get sorted out soon....................Marie xx

daffy2

Hileena, I didn't make myself very clear. I was meaning that I don't think we have a choice about whether we get arthritis, particularly not the inflammatory kinds. I agree that we do have choices about how we deal with it and perhaps affect its onset and progress.

Boomer13

You have all left me with many inspiring things to think about as I work my way through accepting my condition more positively. Thank you.

I seem to have been improving a bit in the past couple of days which is a relief. After consulting my GP yesterday, she is finally going have my neurologic symptoms assessed (again) and told me frankly that she thinks I may have early MS along with PsA, which would explain a lot. I appreciated her frankness, but it's not really what I wanted for Christmas.... :shock: We will be holding off on anti-TNFs for a while.

Better to find out for sure....

Hope everyone is having a reasonably good day.
xxAnna

Mat48

Coming slightly late to this thread Anna but for what it's worth - I see myself as an artist, a partner, a mother and a friend - and strung on the end is that I have RA plus a few weird add ons (facial hives and ice cold tingly legs) that have still no name so I can't begin to take ownership of them even if I remotely wanted to. If they were a house guest have shown them the door instantly :madnoel:

I don't think RA has remotely mastered me yet but unfortunately I don't think I've mastered it in anyway either. Being self-employed and living with a night worker I find that I spend silly amounts of time not engaged in what used to be the main purpose of my existence, making art. Basically I'm in bed sleeping far too much just now and when I'm not I'm trying to get exercise to stave off the stiffness etc.

So the upheaval to my time management is something I hold against RA big time, but I hope at least the day will come when I can harness my RA by using it to make my artwork. And although it does take up far too much of my time at present but it's not all bad. For instance I've been invited to speak at the EULAR congress in Paris in June about a patient's perspective on Telemedicine. I'd infinitely rather I was having a one woman exhibition and going to Paris for the launch if I'm honest - but maybe that wish will come in a bizarre round about way one day once I've finally accepted this condition. If only it didn't keep pretending to vanish and coming back in other forms I think I would be more reconciled and be prepared to take it under my arm and accept it as if it were a rather smelly pet - for life (preferably its not mine!)? X

Boomer13

I agree Mat, the coming and going of symptoms is very difficult, although I seem to have reached a point where they have mostly stayed. Occasionally, I have a really good day which leaves too soon and only makes me want more! I'd settle for consistency just now; I think I could figure out a way to deal with it more positively then.

It does tend to side-line all other interests doesn't it? If things would settle down a little, I would try to reclaim a few dear and easy pursuits. I guess I would be happy with that.

Anna

Toots

Boomer13 wrote:

After consulting my GP yesterday, she is finally going have my neurologic symptoms assessed (again) and told me frankly that she thinks I may have early MS along with PsA, which would explain a lot. I appreciated her frankness, but it's not really what I wanted for Christmas.... :shock: We will be holding off on anti-TNFs for a while.

Oh Anna I am so sorry this is being suggested as a possible diagnosis, but you are right, better to find out for sure and then you know the name of the beast you are dealing with. I sincerely hope that you get an assessment very soon and will be keeping my fingers crossed for a positive outcome.

I hope Santa has better gifts for you over Christmas than your gp is offering. My ear is always available for bending should you ever need it. Huge huge cuddly hugs. xxx

Mat48

Dear Anna you are having a very tough time.

Personally I tend to measure my own suffering against others on here and elsewhere - and then I feel guilty when I read of most people's much worse arthritis experiences. But what we and others forget too easily is how huge an upheaval it all is to go from being healthy to being ill - and if there's a massive variability from day to day it's very hard to come to terms with let alone to own? For instance I'm going carol singing with my choir in 30 minutes time (late night Xmas shopping in town) and I've had to spend a large part of the afternoon in bed just in order to have the energy for all that standing and singing in the cold dark street! :xmas_redface: XX

ichabod6

I have self managed my rheumatoid arthritis and several other
more recent medical conditions which have blipped into my life,
and have always had a full and happy life. I am contented, not
envious and just get on with it.

Boomer13

That sounds like a sensible, down to earth approach, Ichabod. Thanks for your input.

Mat, how was the :carolers:? Hope it wasn't too exhausting or freezing on the feet. Thank you for your perspective.

Dear Toots, you are lovely to me, thank you

Toots wrote:

My ear is always available for bending should you ever need it.

:areindeer: xxAnna

Mat48

It was cold and quite reasonably, only a few were out doing their shopping so we were often singing to ourselves! It was quite fun but, as with any form of exertion these days - I was totally wiped out by it. But on the happy front my hives are receding now! :carolers: xx

Boomer13

That's good news! Yippeeee.....
:candycane:

Mat48

Yes it is - about time you got some too Anna. ((((())))) x

bubbadog

Coming in late on this thread! I've always been the same old me, Arthritis has just jumped on board. I don't own it, I wouldn't want to!! I'm still me just a slightly changed version body wise!! It's something that's with me for life so just have to adjust things to work with me, but if we come across a hurdle we work away around it if we can.