Introducing myself; From being healthy and loving life to being riddled with OA.

[kohai]

Hi everyone,

My username on here (as you see) is kohai, my real name is Jules (Julie), but I generally answer to any of those, whichever you feel most comfortable using

About me, my health and how I went from enjoying mountaineering, camping rough, hiking 20-30km each day over 5 day periods, Military Reserves and Instructor, as well as fitting in a husband, 2 dogs and being a workaholic, a photographer and astronomer, never taking a sick day in years work to losing a home, my job and pretty much my whole life.

I first injured my lumbar way back when I first started in care work. It was my first job was in a small private residential home.

I was aged 18, (I'm now aged 50) and the Moving and Handling/Health and Safety etc were basically non-existent, same applied with all the moving and handling equipment widely available now.

The owner took in one frail lady who (imo) belonged in a nursing home. I went in one morning and this poor soul was covered head to foot in her own double incontinence.

Yep! I made that fatal mistake of lifting her. I felt my back click. As with most, I didn't give my own health a second thought, my concerns just lay with the lady who needed my help.

In my mid 20's my back started causing me quite a bit of pain. I was being seen by a visiting Physio at my doctors surgery and the Physio team at the local hospital. It got so bad at times it felt like every foot step sent pounding shockwaves through my spine. It was agony! But then the Physio could do acupressure and pop whatever it was back in.

Over the years, I'd go into remission for a while, but then it'd come back with vengeance.

In my early 30's I was put on Tramadol, but after a few years, I knew things were getting bad when I'd got on all fours while playing with the dog and realised I actually couldn't get up. Or there'd be times my lumbar would go into spasm and I'd bury my head in a pillow just to muffle my screams.

Late 1990's I was diagnosed with not only Raynauds in both of my hands and feet, but arthritis in my hands. Thankfully after the first two years of plate throwing tantrums at not being able to even cut my own food etc, it went into remission until about a decade ago.

I was still nursing at this point.. I will state here for the record, I was an auxiliary nurse (not an RN or RGN) and happy being just that. I thoroughly loved working for an agency (BNA) as it meant I could be asked to work in literally any field of nursing, which widened my experience dramatically.

For personal reasons I'd rather not go into (and are not relevant to my health), I stopped nursing for good in October 2002.

Over the following years my back deteriorated. So lets move forward to what's more relevant now you know a bit about me and how I first injured my back.

I was fortunate enough that my lumbar went into remission for about a decade, allowing me to return to a job working from home, on a computer. It turned out I was quite the unexpected whizzkid with computers. But toward the end of that decade, my pain returned in quite a traumatic turn of events.

I first got shoulder impingement in 2010-2011 (not OA but please bear with me). I hurt the left then a few months later got the exact same in the right.

I'm not quite sure what happened then, but within a very short space of time, from when my shoulders both really started getting painful, my whole body just seemed to follow suit.

Everything hurt!

Long story short - turned out I have OA in every joint! I had x-rays and saw a rheumatologist once. No follow up appointments, Physio, advice, nothing! I was given this information on my initial meeting with the rheumatologist and left to my own devices.

But I was still getting, what had become horrendous back pain, but this time it had escalated to what felt like just under my neck. Knowing the anatomy, and years of working on the Ortho wards, this was now my health, I didn't want to make assumptions or scour the net and freak out unnecessarily.

I saw my doctor, the MSK team five times (Quick version- MSK is basically anything skeletal).

In 2012 they did one x-ray (of the wrong side) and by Jan of this year were still referring to that same x-ray to continually tell me "You only have 'mild' disc degeneration."

I don't know what bothered ne more, their use of the word 'only, 'mild' or their 'go home and get over it' attitude!

Now to this year.

I went from brain fog to constant, long term waking up each day with little to no memory of the day before, or even the past 2-3 weeks.

My back pain and OA now has me in a disability adapted house in a new area, a new doctor who won't prescribe anything I was previously on as my med notes are umm somewhere between my previous doc of 8 years, and my new doc. And I now can't walk more than a few metres without one of my knees given out and me falling over (or into something). I'm spending 90% -100% of the time in a wheelchair, mostly house bound.

So, last week I finally got the results from my very long awaited lumbar and cervical spinal x-ray.

Discs

L1 to L2

L2 to L3

L5

S1 to L5

• (Lumbar region discs) all have severe disc degeneration.

• My Cervical area is so far into degeneration below, covering and above that my doctor feels she isn't knowledgeable or experienced enough in this area or pain level to treat or prescribe suitable medication now so has referred me to the Pain Management Team.

• Then, she tells me that

"while I already have OA in all of my joints, I now have OA throughout my entire spine too!"

I have no doubts there are many here in this group who can empathise with parts of what I've written, I hope you can, because if you didn't already know, it means you're not alone with this awful pain.

Now I finally have a diagnosis, albeit a scary one, you'll more than likely see me posting in this group a lot more, which is the main reason I wrote explaining so much, not just about myself, but about. the time span its taken and journey from one bad lift in my late teens, to where both I and my health are at now.

I hope to see you in the forum, and if you have any questions, please feel free to ask

kohai

[katie_huffman Administrator]

Welcome, Jules, and thank you for your introduction! We are glad to you have you in our community; we hope you find the group encouraging and supportive.

[celena_adams-locke Administrator OA Ambassador OA Action Member]

Hi Jules, nice to have you on. I am sorry about the journey you have had to endure thus far, but on the same note I am glad that someone finally took the time to listen and diagnose you correctly. I too suffer from OA, mines started in bilateral knees, thanks to my Army days and the most recent in my left hip, leg and low back due to a bad motorcycle accident. I remember being in my 20's in the military and given a choice of either getting out or staying in and bearing the pain. That seemed to be the going solution at the time. I was young and didn't feel getting out would be the answer so I challenged them to do more. Eventually, I was given Physical Therapy and water aerobics which helped. However, I did miss many days of playing with my children because knees kept locking. Now I am in my late 40's and having spent 16 years as a nurse, the pain can sometimes become overwhelming. Not only can it wear on your body, but on your mind. This is where coming together talking with others who know what you are going through helps.

So tell me, what are some of the things you do to motivate yourself to keep moving and not give up?

[kohai OA Ambassador in reply to celena_adams-locke]

I can relate to wanting to stay with the Military. I did a fair amount of mountaineering, rock climbing and abseiling with them. I felt I connected better too as I didn't have a great intro with civvies as a kid. After my dads second tour of Germany, I came back speaking five languages fluently but German was the one I spoke in the most, and because the English kids thought I had a German twang to my accent, I was bullied a lot. Didn't stop me years later from doing a third tour out there though

As far as my main motivation, while both of my knees feel like they go backwards slightly before then becoming so painful that I can't weight bear on them at all, I walk around the house when I can, and use one of those pedal things... it goes on the floor and you pedal just like a bicycle, but its just the pedals, no other parts to it.. I can't remember what its called, but I try to do half hour a day on that when I can.. I don't want to lose the leg muscles that have kept me walking long distance all these years.

My biggest fears are waking up one morning to find my spine has finally given up and I lose the use of my legs completely, or I end up having to rely on a motorised wheelchair or scooter. I'm trying to work through the pain, without over-doing it because as the saying goes;

'Use it or lose it', and I'd rather not lose any of my limbs if I can help it, more so when I know if I had exercised even a little, or walked instead of using the chair..

If I finally do become paralysed, which my doctor thinks may be inevitable, I'd rather know I exercised and did everything I could before that happens, than be left with the guilt of knowing I could have done more but didn't.

My not wanting to 'need' a motorised wheelchair or scooter and me getting in the leg exercise while I still can may help prolong paralysis. I know it may not, but guilt is a powerful motivation on its own. So every time I feel myself thinking up excuses for why I can't that day, I remind myself to 'do it while you are still able too because tomorrow may be the day where you don't have that choice any more', because to be honest, I've yet to speak with anyone who has had their OA progress so far, they can tell me Whats likely to happen, I've met loads who are basically at the same point with their pain, illnesses and plethora of meds as I am.

I hope that makes sense