OA mixed with other physical health issues/problems

[kohai]

Hey OA community, hope your week has been the best it can be and hopefully we get a little nicer weather this weekend

I have a question I'd like to ask;-

As we all either suffer from, live with, care for someone/others or have friends/family with OA, I'd like to ask how someone manages with their OA when a long term impairment/disability adds to the mix.

Using myself as example here ;- I've posted many times the extent of my OA (basically every joint from the base of my neck to the tips of my toes), so I often have to rely on a cane or crutches, or a wheelchair when my shoulders, elbows and hands are acting up. I've known since my early to mid 20's that I had the first stage,, hereditary Dry Macular Degeneration (scarring on and around the vision part of my eyes). My vision was playing up a bit in Feb this year, the cheap store bought magnifying glasses I had just didn't seem to do the job anymore, so I went to the optician. I was then told I not only had Wet Macular Degeneration (Dry being first stage, Wet being the second stage), but quite possibly Glaucoma too. Within 10 days I was seen by the eye hospital specialist and treatment started to slow down the condition as it's incurable. I won't scare anyone with further details... Needless to say, post eye treatments I'm told to take it easy for the following 48 hours, yet the more I rest up, the more my joints ache when I move.

During the times my OA allows me to walk unaided, I was wearing a bright yellow badge stating I have low vision - well, surprisingly it wasn't noticed no matter where I wore it, so I brought a white 'symbol cane' signifying low vision...

Onto my question... In two parts;-

1. Any ideas/suggestions on how, when my OA is bad and crutches or wheelchair is needed, am I meant to still use a low vision cane?

2. Does anyone else with OA have other physical problems you struggle with? / have overcome/mastered?

Any advice, suggestions or similar you're going through/been through and how you manage would be of great help. Everything I've seen seems to be aimed at just one health problem, not how to manage if there's more than one.

(Note;- you don't have too say any condition(s) if you don't want too, it's entirely your choice 🙂)

[Constance13]

Obviously you can't use a white cane! There really should be something else for people in wheelchairs who have weak vision.My pain is about the same level of yours, but at least I am 82. I have Seronegative Poly Arthritis . Polymyalgia Rheumatica, and Gout. There's nothing I can do with any of them except "keep taking the tablets".😏

Acceptance is one of the most difficult things one has to do. Being sorry for ourselves won't help a bit.

All the best! 💐🍀🍀🍀

[kohai OA Ambassador in reply to Constance13]

Thanks Constance. You're so right in that feeling sorry for myself/ourselves solves nothing. I admit it does get me down at times, moreso when the pain is really bad, but knowing it's not always 'that bad' does stop me feeling sorry for myself. I guess it's more frustration because I want to get out and do things, and not let my conditions rule my life. I try to find ways and means to adapt as much as I can, however, when I hit a brick wall, in not being able to find a solution I do tend to get somewhat frustrated, which is why I asked if anyone else has a similar situation and how they cope. I was hoping it might trigger some ideas I could use or adapt. You are right, a white cane and wheelchair don't mix, yet I've spoken with the macular society, the RNIB and a wheelchair company to see if they had any suggestions or ideas, prior to my posting here. I'm drawing a blank though. I know there must be a way, surely I'm not the only one like this... I just have to keep trying. I wasn't raised to ever feel sorry for myself, that there is always a solution, I just have to find it. You said your pain level is on par with mine, then my heart certainly goes out to you as it's not something I'd wish on anyone.

[Constance13 in reply to kohai]

I suppose the macular society and RNIB (and others) don't imagine people who can't see well, actually are able (with restrictions) to use a wheelchair. However they should be doing SOMETHING about it.

Don't worry about being down in the dumps when you can't DO things. There will be many many times when you can cope very well. Enjoy those times and rest. 🍀🍀🍀

I'm much older than you so "being sooo ancient" I don't feel guilty if I can't do much.

Though wouldn't it be wonderful to have a few days without pain??

Others are far worse off. Our illnesses don't kill.😏

[kohai OA Ambassador in reply to Constance13]

Thank you so much for your last couple of lines. I see it exactly the same way, yet as soon as anyone who has full health comments, all I get is "you shouldn't under-estimate or play down what you go through" ... I don't see it as that, by any means. I know there are so many worse off than me. Prior to the OA getting into my spine, I initially injured it while I was a nurse, so I've seen first hand the widely varying conditions many have to live with. I'm not labelling all with full health with the same attitudes, some unfortunately just don't get it. I've been in pain for over 35 years, so can differentiate now between what I can cope with and when it's really bad. I've learnt from that what I can and can't do, what triggers it, and how to best manage it without the need to constantly bug my doctor. I use past horrendous pain to evaluate current pain, so know just how much I can do. I know it'll worsen with age, but as long as I can stay upbeat, and retain some sense of humour, it's a start. I was talking with a nurse at the eye hospital last week, she was telling me she has double jointed ankles so randomly falls down or rolls down hill, we were saying how amazing it is that over time, we can joke and make light of our conditions. I guess it's a mechanism for dealing with it all. I wholeheartedly agree the macular society and/or RNIB should at least have some suggestions how I can manage. I don't always need a wheelchair, but it can still be demanding/taxing using a white cane with crutches or walking cane, especially when shopping. I had to give up using a rucksack to carry shopping when it caused more back pain than expected. I won't give up trying to find a way to manage both though, there must be a way to do it without my injuring passers by. From what your saying and how you come across, we sound similar in - regardless of the pain, we still push forward and try to stay upbeat, not letting it dictate our daily lives. You're definitely an inspiration!

[Constance13 in reply to kohai]

Can't you paint the crutches and walking cane white?

[kohai OA Ambassador in reply to Constance13]

It's a good idea, I'm not sure if people would recognise it as being low vision related like they do a low vision symbol cane or severe vision cane, but it's definitely worth a try, plus I have a lot of white paint and white gloss in the house.. it can't hurt to try. I know there's a macular society group in the area, I thought one or more of them may have had ideas, but due to the pandemic, they're doing it all by phone only for now. I'll give the white crutches a paint, it can't hurt and fingers crossed (if I could cross them) it may even work. Thank you for the idea 🙏