Hello, new to this !

Glisten

Hi all,
I am new to the forum and just want to introduce my self. I have had OA for about 20 years now, starting with my lower spine caused by me falling out of a tree after thinking how easy it was to climb, it was not and fell to the ground landing on my back and having to be hospitalised with neck and lumber injuries. Unfortunately I did not learn from this and fell from a zip wire injuring my knees and back again. But I did not give up I continued to have various falls and injuries until my early 60's when after falling out of the bath my body had finally had enough and went into lock down. I have been diagnosed with Lumber and Cervical stenosis and OA in my knees, hips, spine and shoulders. It is now starting in my hands and feet. I have accepted some of my limitations and have found ways round others using various gadgets. The high heels and my hiking boots have been reluctantly given away apart from one pair of high heels which I cant bear to part with. I sometimes take them out just to look at them. I am receiving PIP and ESA and Severe Disablement Allowance. and I also have a Motability car. My previous job as a support worker has stood me in good stead when it came to applying for benefits.
My main problem I find dealing with is being somewhat ashamed to let people see me in this state. I moved away from my home area a few years ago and have kept in touch with old friends via facebook but have never mentioned my disabilities only my family know about it. I have 2 reunions coming up later in the year and really want to
go, but I am really struggling with letting all my old friends and colleagues see me like this after being so active. Is this something other people have found and dealt with? I don't know if I could cope with a lot of sympathy or people feeling sorry for me .
would love to hear others feelings on this. :

[Deleted User]

Hi and welcome to the forums - we are here to help and I'm sure you will find any answers from our varied membership.
Al

Mike1

I am a fellow OA sufferer (with other issues too) and can't handle sympathy either, luckily my cat treats me as normal anyway I can't handle people helping me which is pretty stupid especially when I need it (apart from my Home Help who is great). I live alone (with my cat) and have found that since having to use a wheelchair out and about I have retreated gradually into my bungalow and have stopped going out and about so much. Although I have been up the village shop to get some milk on my mobility scooter this morning and I have to go to the Surgery this afternoon to pick up my meds but I am putting that off at the moment. I have noticed that some people I know from the days when I could work have blanked me when I am in my wheelchair even if I have said "Hello" and called them by name. This has contributed to becoming more insular which, in turn, causes an increase in my depression and anxiety. Being a 61 year old bloke I have not discussed this with my GP as to me it sounds like whinging. There is no easy answer to the problems that we seem to share and I guess it is down to me to make more of an effort, perhaps I will get around to it one day. Hope you find a way to get your head around it too.

stickywicket

Hi there and please forgive me when I say I couldn't help but laugh out loud at your post. I love your determination, self-deprecation, sense of fun, total lack of self-pity and can-do attitude even though it's probably the latter that got you into this pickle.

Odd though it may sound I can identify completely with your attitude. It's odd because I've had RA for hundreds of years (and consequently OA too) and there is no way whatsoever I could hide my disabilities. My finger joints are all complete anarchists, my feet stick out at the 2.10pm position (now heading for 2.15pm), one leg is considerably shorter than the other thanks to a THR which has ventured upwards and a TKR below it which has compensated by sliding inwards. In short, I look a mess yet still infuriate and perplex my husband by refusing to use the wheelchair except when absolutely necessary. This includes hospital appointments for which I obviously wish to look what I laughingly call 'my best'.

I, too, hate sympathy. I prefer to concentrate on what I can do rather than the ever-increasing list of what I can't do. I don't do reunions other than regular small ones with people who must notice my slide into total incapacity but who, fortunately, are only interested in sharing the fun and catch-up stories.

I don't do Facebook but I think I know what I'd do in your circumstances though one can never quite put oneself in another's shoes. Certainly not the high heeled ones anyway I'd get in touch, off Facebook, with those I felt most in tune with and explain how things are. Your post on here would make a good template to work from. I'd explain that I felt a total wassock but would still love to attend so I was giving them advance warning so that they could (a)leave out the commiserations and (b)protect me from the commiserations of others.

I'll be honest. I hate sympathy but empathy is good and useful. Empathy means 'You're a mess, I'm a mess, let's talk about something more interesting but I'm here if needed.' It doesn't usually require a lot of words. I hope you'll find it on here and I hope you'll find it among some ('all' would be asking too much. It's quite a precious commodity) of your friends.

dreamdaisy

No such problems here! Born with auto-immune junk which led to severe bullying at school and then brought psoriatic arthritis when I was 37: OA was diagnosed when I was 51. I'm now 60, nobody knows me without my disability and they never will. I began with one joint, now it's around forty: some joints have one, some the other and others both. I am a stale cake layered in mouldy icing topped with two rancid cherries (three if you also count my fibromyalgia).

I can understand your reticence and reluctance but never underestimate just how disinterested others can be in our woes and difficulties: they find their own far more fascinating (which they're not). I never refuse help because that frees up more of my precious and limited energy for me to use / waste on doing my frivolous things. My footwear is flat, colourful and sometimes sparkly, my clothing all pull-on-and-off but smart, when people follow the social niceties in asking me how I am I reply 'I could be better, pleased I'm not worse, now let's talk about you.' My husband has retired and offers to help with things like changing the bed but I refuse unless I am very bad; it might take me all day but I view it as a combination of exercise and physiotherapy, it's good for maintaining my range of movement in various joints. I was awarded indefinite DLA but last week had my assessment for PIP: I am confident I will be refused so that might be the end of that. I have a blue badge so friends don't mind taking me out as I simplify parking issues.

There are around ten million arthritics in the UK, the majority having OA: I wouldn't be at all surprised if some of the friends at the reunion also have it. Right, time for a cuppa and a lie-down. DD

Glisten

Hi, thanks for your replies and support. Felt like I was feeling sorry for myself lol, needed a reminder that how I look is how I look and **** how others see me. I am going to my reunions using whatever I need that day whether it be my brilliant walker or my scooter and wearing my flat shoes.
It was so nice to be able to have a moan with other people who know what I am feeling, and also good for me to remember that their are others who have it worse than me. I think it will be good for me being on here, I can get support and people to moan to when I need it and a kick up the backside when I need it too.
Mike hope you manage to get it together to get yourself out there soon. I have 2 dogs and they have to go out so I have to get out regularly with them, maybe you could take your cat out for a walk lol.
Glisten

Glisten

Hi, thanks for your replies and support. Felt like I was feeling sorry for myself lol, needed a reminder that how I look is how I look and **** how others see me. I am going to my reunions using whatever I need that day whether it be my brilliant walker or my scooter and wearing my flat shoes.
It was so nice to be able to have a moan with other people who know what I am feeling, and also good for me to remember that their are others who have it worse than me. I think it will be good for me being on here, I can get support and people to moan to when I need it and a kick up the backside when I need it too.
Mike hope you manage to get it together to get yourself out there soon. I have 2 dogs and they have to go out so I have to get out regularly with them, maybe you could take your cat out for a walk lol.
Glisten

stickywicket

Oh yes! Go for it and make sure you enjoy it

Rest assured that, despite the limitations of arthritis, we are brilliant kickers up the backside. It's good physio

OK a confession. I did take our cat for a walk on a lead. In my defence, at the time she was old, she had heart failure and very occasional epileptic fits and she seemed, in the end, to not be sure either where she wanted to go or which way was home. I didn't take her far and, if the neighbours wondered if I was the one with potential dementia not the cat, they were kind enough not to mention it.