Been a member for a while but only just found this forum.

[kohai]

Hi all,

My name is Julie (Jules), I'm now 50 yrs old.

Wayyyy back in the days (those in care roles/nursing will know what I mean) there weren't many, if any at all, rules and regs on Moving and Handling, and if there were, they certainly weren't enforced in care homes. I was just 18 when I started in the care profession. I literally knew nothing, but the home I got my first job in was a large converted house, I think 8-12 residents max, and all relatively mobile. Some just needed a hand getting out of their chair or picking up things they dropped. Until the owner took in one lady who, looking back now, should have been in a nursing home and certainly not this little rest home. I went in one morning to find this tiny lady who can't have weighed more than four stone covered from head to toe in her own faces. Regardless of my lack of experience, I'd say I'm pretty switched on and have good common sense so rolled up sleeves, got out protective clothing etc and made the mistake that would live with me forever. I lifted her from bed to commode, did what was needed but I pulled something in my back.

I just thought I had a stiff back and treated it as such with hot baths, heat packs and brufen.

That was roughly 1986/87?

Moving on, relatively pain free to about 1998 when I got a nice flat up one flight of stairs. Something in my lower back kept popping out. Every step sent shockwaves up my spine. The Physio visiting my doctors surgery (luckily only at the end of the road) would press so hard on my spine I thought it'd burst through my hips or ribs, then I heard a gentle pop sound and all was good as new.

In 2002 I sadly lost my older brother and when this idiot of a bereavement counselor turned up at my house, he tried making out my back condition was psychosomatic! !

I asked a Physio at the hospital where I'd been going after having both hands diagnosed with Arthritis in 1998, she said, looking down at my back "Sorry but the man is a fool! From what I'm looking at, it looks 🔙 like you have a house brick inserted in your lumbar, so no, you certainly aren't imagining this in any way at all".

Swiftly moving on several years,past

the loss of pets, my mum, hubby's father, in 2010 we moved back to my home country of Wales.

Since then we've lost two dogs, I've had a breast lump removed, waited six years to have shoulder impingement in both shoulders to be fixed and a completely shredded chest bicep, hubby had part of the arterial wall break loose and block blood to his heart. In 8 years has onlyseen our doc twice, both under duress, so his heart must have been bad for him to go to A&E. But he "walked" 45 mins all the way to the hospital, stood at the counter and said "I think I'm having a heart attack", as this stupid receptionist messed about trying to find our post code, hubby got closer and closer to the floor and went into cardiac arrest!

I'm not sure how the stress of this affected me, but it wasn't good.

No idea how, why or whatever but two weeks later I'm in so much pain myself I'm being seen by a rheumy who is telling me that while she has no idea what's destroying my spine, I have chronic OR in all major joints and quite a few smaller ones.

I only got to see her once more after this and unbeknownst to me, I was having fluid drained out of one of my knees. Wow I screamed the place down!!!

The nurse is there saying "squeeze my hand when it gets painful", I couldn't as the pain in my hands wouldn't even let me make a fist.

Turns out the Rheumy let the hospital Registrar use me as his first guinea pig patient, and didn't insert any analgesia or any other numbing agent until after he removed this massive needle from my knee.

So hobbling out, the rheumy talking over my head to someone behind me (I'm quite vertically challenged), I looked up and had to interrupt to ask, So what happens next? she replies, " well, I have a 1pm meeting and I think its the nurses' lunch break now", and with that, walked off.

Haven't seen or heard from the rheumatology dept since.

From 2011 to mid 2017 my entire support system was my hubby and my doc. I've only had a social worker over the last year and I only got her by accident as I was phoning the hospital to try and get someone, anyone to look at my back. The woman on the phone said "would you like a social worker", this kinda blew me away and left me speechless but any help is better than none.

Hubby and I have been married 10 years this September and haven't been able to share the same bed in 4 of those years. I had to spend a year sleeping upright on the sofa to stop me laying flat (as that virtually virtually

paralyses me come morning and I can't sleep with straight legs or I can't bend my knees.

I finally got a hospital bed a year ago (so now I sleep in the living room, hubby is upstairs) and due to the landlord now wanting his house back, I got moved up the priority list for an adapted house. We move in 20 days time and courtesy of OA, I've yet to have one good day where I can pack, without my knees, shoulders or ankles giving out on me, tennis elbow in both arms creating havoc or having to be carried back to the bed and fed diazepam and Oramorph for the pain and spasms.

My stress level is through the roof as the list of things to do seems endless and all seems to be needing to be done ASAP. I'm having so many break downs and "I can't cope anymore" days, and after waiting a whole two seriously stressed months and one excruciating scan to find out if I have MS (woo-hoo I don't) , I get told I'm anaemic again.

So this is me, and well, not exactly what I'd call a life as most of its spent either in a wheelchair or bed ridden crying in pain.

But I thought after being here so long and only just finding this OA forum, I'd introduce what's left of me.

[Hidden]

Kohai, if I didn't know I was reading a forum post, I would have thought this a horror story. I am so sorry to hear of the nightmare you have been living for several years now. There's othing I can say to help, or make you feel better, but I do hope you somehow find medical support and relief soon. You are in my thoughts and prayers.

[kohai OA Ambassador in reply to Hidden]

Thank you poemsgalore1, for replying, keeping me in your thoughts and prayers.

I feel like I'm one disaster after another, or falling apart at the seams.

Hospital bed safety bars can only be raised and lowered by a carer/nurse, so those weren't much good to me if the bars were up and Jon (my husband) had to go out for milk or something. And because when I get fatigue, anemia or just missed several nights sleep I tend to fall asleep sat upright. (usually while reading or watching a movie on my phone ). So we brought baby bumper bars, the kind for a small childs' bed, so I can lower them myself when I get up.

Then I thought I'd had an accident with them by sleeping with my elbow wedged in the side of the bars... turned out, according to my doc, I've had a stroke! (hence typos, am typing left handed, but I am naturally right handed and my right hand is currently paralysed.

I thought what happened was, 9am my morning medication alarm on my phone went off. It was on my wheelchair next to the bed. I got myself stuck as I'd rolled too far, I had to really struggle to get back up. I thought it was my elbow getting wedged between the mattress and the bumper bar hinge, but once I was back safely on/in the bed, I must have left my elbow where it was.

It wasn't hurting so I didn't think about it. Woke up to find I'd lost all control of my entire hands, fingers, thumb and wrist.

Jon ( my husband) said my hand looked like it was mimicking a T-Rex !!!

About a week later I still had no control of my right hand so went too see my doc. He said, as I sat there, "I'm sending an urgent request now for you to be seen by the Stroke/TIA specialist.It looks like you've had a small stroke (TIA) in your sleep.So by the time you woke, all other symptoms would have passed, but you've been left with paralysed hand. The appointment should through in a week or two, and before you ask, yes, it is stress related".. (shows how well my doc knows me and what I'd ask.

So turns out, it wasn't the bumper bars and wasn't my fault. (I'd been blaming myself for not being more careful. So now, still with no use my right hand, and having anemia on top of everything else, (the OA, tennis elbow in both arms, disc degeneration from the OA in the cervical and lumbar areas of my spine- that often prevents me sitting upright for longer than half hour or walking most days just a few yards - the Raynauds in my hands and feet, the shoulder impingement in both shoulders that I've had surgery on, but still have due to the lack of shoulder muscles, front and back and the constant fatigue), and I'm expected to remain calm and not stress for fear any other part of me will be left paralysed if I have another stroke!

I'm supposed to move house over the next few weeks and the dates keep being changed. Was supposed to be this coming Monday and all everyone says to me is "just think of your nice adapted big house, with a lift, bathroom and wet room, you'll have so much space".

Of course I'm grateful, very grateful, it'll give me so much independence back, and space to move around the whole house, not just hospital bed to kitchen and back, but am I being selfish? or stressing too much again when all I keep thinking though is how the heck am I supposed to pack a whole house, while in a wheelchair with one hand, then unpack it all again the other end.

Sorry to go on about this, but I don't know anyone where I live, I get very nervous and anxious around people I don't know, which makes it harder to make friends, but I'm hoping to change that once we've moved. And other than my husband, I have no-one to talk too who even nearly comes close to understanding pain or OA..

Once I've posted a couple of times and feel more relaxed in here, my posts do get drastically shorter, honestly

[kirstenra Administrator in reply to kohai]

My goodness, kohai. You've had quite a journey. I'm thrilled for you at the idea of an adapted house! Moving is stressful even in the best of conditions so while I appreciate your concerns about it...this, too, shall pass, as they say. Don't mean to be glib but it is just something to get through as best you can. I hope you can enlist an army of helpers.

Much like poemsgalore1, I am at a bit of a loss with useful, proactive ways to help. You have many substantial health issues and I feel your (understandable) stress. Have you ever tried mindfulness meditation or other meditation techniques? Benefits? 1) Research-backed evidence showing benefits for pain, arthritis, stress, and more; 2) simpler than just about anything (especially with a bit of patience and practice); 3) as time-consuming (or not) as you want it to be; 4) can be done almost anywhere that you can step internally and focus (inside, outside, quiet corner away from hustle & bustle); and 5) free phone apps (books and online guidance, too, depending on what floats your boat).

Want to learn more? 2 links from the Arthritis Foundation (US):

- Mindfulness meditation arthritis.org/living-with-a...

- Other types of meditation arthritis.org/living-with-a...

Try it, keep it up regularly, and tell us how it works. I want you to have a tool in your toolbox to calm your mind and body amidst the frustrations, challenges, and bemusements of the wild ride that is your healthcare and personal health experience (also, moving house).