hi everyone

jacdore Member Posts: 3
edited 28. Nov 2023, 14:04 in Living with arthritis
Hi everyone. Came across this site so have joined up. Here's a bit about myself.

I'm 48 nearly 49. Aged 26 I suffered whats called "A major double Stroke". It's basically a brain stem stroke which upon having it, it took both my sides at once and i was paralysed from the nose down. All i could do was blink.

Took 9 months in hospital, where my parents were told several times I wouldn't survive that day/evening. Then when i stayed alive, they were told i would defiantly remain in a vegetated state unable to move, talk, eat orally etc etc.

Over the 9 months and intense physio 3 times a day, my left side started to very slowly come back. Then with my determination and physio, my right side also came back although not as fast and not how i wanted. I was given a tracheotomy and now i'm without but struggle sometimes as i cant control my emotions and my brain forgets to send the message to breath. I was also given speech therapy and re-learnt how to talk. Even got taught to chew on foods and through trial and error over time, I got the ok to swallow the slushy foods, which later went on to soft, then medium then normal. And no more drips or tubes in my stomach. Learnt how to control my bowels,water works, although that took quite a bit. Yeah!!!

I re-learnt how to do every movement from a baby, even just sitting up. I got to walking short distances in-between two physio's and their support. I was given a wheelchair. Then I was told, sadly i would never walk off of the ward. Through sheer determination and attitude, I did, to go home to my own home.

Firstly though, I was sent to a young disabled unit for around 3 months, to re-learn more, communicate again with many, re-learn how to cope with life basically and do all things like washing, ironing, writing, more physio everyday, etc etc.

Now i'm home (well been 20 ish years) My left side is back by 70% and my right is about 45%. I furniture walk around home and fall often, whilst i'm wheelchair bound outside.

I'm married, found a great guy after my stroke and who took me for me and helps loads although works too. We're both animal mad. Got up to 38 pets at one point. Now after they have died of old age, tumours etc, we're down to 14. A rottweiler (was 2) 4 cats, 4 rats, 2 leopard gecko's, 1 blue tongued skink, 2 snakes and 2 fish tanks. We've had in the 38, chickens, rabbits, hamsters, guinea pigs bearded dragons, then the cats n dogs n rats.

My hubby sadly had an operation go very wrong, so that was a nightmare. He still suffers :animal_busy: about 4yrs on with severe pains and needs regular medical things, like mri's, xrays, bloods, cat scan, ultra sounds for next 10years min and if anything happens, that 10years starts again. So we hold each other up mentally.

So now your bored of my story, I have joined as I have osteo arthritus in all my joints. In constant pain and would love to read how you deal with yours. Mine is just pain killers that dont really help when the pain is medium to severe. Its usual things like, tramadol, oramorph, codein, paracetamol, (ibrufen but thats not subscribed). I'm on many other tabs, but, those are the pain one's.

I know hot water bottles help me, oh and the tens machine.

So thats me guys, cant wait to chat to you all. Thanks for reading.



  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hello Julie and welcome to the forums from the moderation team if you have any problems using the forum please do send us a PM.

    What a lot you have been through! You and your husband and you still find a home for all those animals. What comes through reading your post is what an upbeat and determined person you are. A positive attitude is the best one to have with arthritis on top of everything else :D

    We have a great community here, with lots of experience of arthritis who I know will make you very welcome and help in any way they can. Please do join in wherever you like.

    I look forward to seeing you posting in future.

    Best wishes

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, you have been through the mill, haven't you? I am sorry. I was born with auto-immune issues so starting my first arthritis in 1997 (psoriatic) was not a huge surprise but the diagnosis of osteo in 2011 was; for some inane reason I thought that one kind would be enough. :lol: Some joints have one, some the other and others both so life has its challenges. I began with one and now it's around forty so still have some to go. :lol:

    The psoriatic is controlled by medication (I know it's working because my bloods are lovely) and the OA is being a nuisance at the moment thanks to the weather. I cannot control that but I can exercise some degree of management by not physically overdoing things and not eating too much acidic food. I flirted in my early days with tramadol etc. but decided to keep it for the high days and holidays i.e. when things are very severe or I need an extra hand to get through the day. I get by on 30/500 cocdamol, that dulls enough of the sharper edges to allow me to get on. I shall treat myself to a trammy or two tomorrow (if I can find them) as I have a family funeral, which will involve too much sitting down and a 300 mile round-trip. I'll be back on Thursday, hope to hear back from you before then. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,608
    edited 30. Nov -1, 00:00
    Hello and welcome from me too :D You certainly have, and have had, a lot to cope with and I guess the OA isn't the worst of your problems. I have it too as there were no modern disease modifying meds for my rheumatoid arthritis when I first started. As a result the OA set in but, many years later, two new hips and three new knees plus lots of self-fused joints, I'm in nowhere near as much pain as I used to be and now just take a couple of low dose co-codamol going to bed. I can't take NSAIDS such as ibuprofen, tramadol makes me throw up and, on the one occasion I was given oromorph (admittedly for the worst pain I've ever been in) 4-5 doses did absolutely nothing for me so I'll steer clear of that one :wink:

    Please join us on the other forums. Living With Arthritis is the most popular. I'm sure you'll have lots to contribute :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • jacdore
    jacdore Member Posts: 3
    edited 30. Nov -1, 00:00
    hi guys, sorry for the delay in replying. Thankyou for such lovely comments etc. I had been seeing an orthopaedic surgeon for approx 15years, where he gave me steroid jabs in most joints every 6 months and an op around a year at a time to clean my knee out, cut back all torn, fraying ligaments or whatever there called, shaving the arthritis fuzz down and generally cleaning out. All of which really helped. He did other bits n bobs too that my stroke had caused. He covered everything joint wise, ankles, hips, knee's,neck, shoulders and back/spine. Sadly he retired (he did wish me good luck as knew this would now happen) and now i'm left seeing 5-6 other consultants as they dont do all joints, its basically 1 for ankles, 1 for knee's n hips, 1 for shoulders, 1 for backs etc. Right pain in the bum but hey that dont hurt physically, bonus :) But now they say, we dont do steroid jabs anymore or recommend them. We also arnt allowed to do the knee op's you had either. All they say to do now is "Just physio". I've had physio on and off since my stroke. All saying over the last several years we cant help you no more because of your stroke as it wont able me to do the exercises needed. So now i'm left with nothing and just swallow my painkillers like smarties and hope they do kinda work. Well they do kinda help if we have a nice dry sunny day, all other days are a nightmare, so guess out of 365 days i suffer badly 300 of them max. Oh i did get referred to the bloke taking over my retired bloke and he was totally useless. Refused to even read my notes or look at my scans/x-rays etc. All he insisted was physio and after a year of waiting we were told (by his understudy) to chase, so we did, to be told we know nothing about you needing physio. Although the idiot reckons he has requested it 3 times. Even rang his secretary to be told he may get back to you and he may not. The later happened. So i asked to see his boss. Who upon seeing on friday was shocked he had never even examined me. Notes from him back that up too as well as us verbally saying it. Sadly some just ask me "Why are you in a chair" to me explaining due to a stroke, thats all they listen to and blame that only. He's sending me for an MRI this boss and says he will ask physio to defiantly do something. I'm back to him in 3 months time.
  • stickywicket
    stickywicket Member Posts: 27,608
    edited 30. Nov -1, 00:00
    I'm sorry you've had a bit of a runaround since your previous orthopaedic surgeon retired. It's true that orthopaedics is getting more and more specialised which is really, overall, a good thing as it's because there's so much more understanding of musculo-skeletal problems and how to solve them. But every breakthrough brings its losers and I guess you lost out when your man retired. I'm pleased that thigs finally seem to be happening, though, and I hope the physio does help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright