S03, Episode 2: Legs
'Ahh..hhhahha that's fucking baltic, ahem...a little bit chilly'
My butt, thighs and lower back land on the x-ray plate and I jump a good two feet.
'Ms Stubbs try and stay as still as you can please, this won't take long'
Of, fucking, course.
But it takes an age. The radiologists contort me into positions that my painful leg, hip and back can barely manage.
'It's just to get a really good image of what's happening in there...'
Yes, I understand that but ouch.
I'm here because a doctor I finally paid a visit to thinks I have a strange disease called Paget's. And for good measure she decided that not only my thigh needs a looking into but my hip and back. This is largely due to my slow, stiff and painful movements.
I hate being processed through systems and hospitals are no different. But I do understand that to get to the bottom of my pain I need to endure umm more pain.
The x-ray has zapped me to an apparently satisfactory level and I am left to change back into my clothes. I'm now so cold and exhausted that this takes me so long an officious nurse asks me to hurry up. I might look young but my body isn't behaving like a young person. I fumble zips, cock up shoe laces and generally make a shambles of putting my shirt on inside out.
'MUM!! Daisy looked at me funny!' Lily apoplectic with indignation.
'I didn't...(sobbing)...I jus walked into the room...' Sniffs Daisy.
'Shuttt up!' I am not in the mood for squabbling. I need wine, now. A lot of it. I'm shattered, wrung out and in worse pain than when I started the day. So much for the curative power of hospitals.
A million weeks later and I receive a curt call from my doctor informing me I didn't have Paget's disease. They sounded deeply disappointed. Paget's is rare and I get the impression it would have given her some professional kudos to diagnose such a thing.
Now I am unversed in how to manage the medical system. I have never really been ill in my life. Apart from bouts of malaria in Africa and giving birth I have had little to do with medicine. Naive I think is the term.
I believed, silly me, that if they hadn't found one thing then the obvious solution was to continue on their quest to discover what was actually wrong. Noooo. Nope, definitely not.
I had to return many months later after not making any progress, as I saw it. There another doctor told me I have arthritis, particularly in my hip. Probably need a hip replacement at some point.
OK! Punching the air I thought, this is good, now we have something.
He hands me some painkillers and tells me to wait for a physiotherapy appointment.
I don't take the pain killers as they are knockout with opioids, one thing I do know is never, ever give me opioids. I'm prone to some pretty wild hallucinations and delusions. So just like real life but in glorious Technicolor. Sadly, not the fun version, the abject nightmare version.
Weeks pass. Months pass. Even I am catching on you need to stay on top of these buggers if you have any chance of ever getting a service. Eventually, I get an appointment.
Only it's not at all what I expect.
'Hello, I'm Mr Jansen. You mussht be Ms Sshtubbs.' A tall elderly Dutch gentleman proffers his hand. 'You erm have a very, thiss ish very interesting, a very rare arthrishis.'
'Yesh, it issh only usually found in men over 90 years old. You are very sshpecial.' He smiles benignly eyes twinkling, clearly delighted with this 'specimen' he has been presented with.
Oh god, I'm going to be a medical experiment.
Ah, yes - trying to keep the doctors focused. It’s a full-time job. Don’t get me wrong, I will defend the NHS to my last breath, but you do have to keep prodding them….
Thanks for your post. Oh my dear....l am sorry to read of your trials and tribulations! What a lot of shit you get shovelled onto your plate. 😟 Actually we could get together and compare notes because l have quite a lot going on too, in the major shit department. I was in car crash aged 17...numerous operations, wheelchair bound twice, 2 knee replacements...etc and so forth. And it got me down at times, but generally l got on with life...studied, got great job at Amsterdam university as teacher-trainer (where l still do a few hours on line). But now parkinson's has really beaten the stuffing out of me...l find it so hard to deal with the symptoms, especially that it affects my gait. I often can hardly stand up or walk. That's so hard to take. Especially for a manic doer like me...like l used to be...like l was. I used to do 10 things at once and loved being active! But that's all past tense now.
I keep telling myself FOCUS ON THE POSITIVES! Wonderful husband, two beautiful kids, good friends, etc, etc. I've got lots to be grateful for..and l am grateful....it's just so bloody hard sometimes. Life is so, so hard now. I actually feel a bit guilty even admitting this...look at Ukraine! Oh my god...l think l'm having a hard time look at people there! But still....
Well this has helped me to write this down. I'm having a weepy evening so this has helped me focus. Thank you again for your input! You really make a difference, you know. We love you on Twitter and elsewhere! Sending positive vibes (if I can find em) ....sending love ❤️ Sarah