It’s not all bad, promise!

I’m very conscious that I’ve gotten into a habit of posting whenever things start to go a bit pear-shaped. I guess it’s because 1) that’s when I have things on my mind, and 2) there’s sometimes a misconception or two to clear up. Or maybe it’s 3) – an attempt to reach those going through similar experiences to me and will totally get it – because unless you suffer with chronic pain I’m afraid you just don’t get it. So here I am just trying to 4) vocalise my feelings and emotions as I navigate my journey through this.

Now, last time I posted I was in a pretty dire place emotionally and physically – sciatica set in (both legs) and left me unable to stand, walk or sit for a scary few days. Luckily – I managed to turn it around and was back up and partying (with slight precaution) at my friend’s wedding in Cambridge the next weekend. Over the past five weeks I’ve had four weddings! Each one of them have been amazing in many different ways, and I’m very lucky my body’s let me cope with it! I do think there’s huuuuge power in positive mental attitude and your brain’s ability to help deal with pain and healing is properly awesome.  No, it’s not going to cure us, but it helps massively in how you perceive pain, and you certainly need it to get through the bad days and get yourself out of bed, ready to fight another day and get your strength back. I’ve always been the smiler, the giggler, the one to see the good in a situation (though you probably wouldn’t believe it from reading this blog!) so I like to think I’m lucky it comes more naturally to me.

Anyway, I’m keeping this post pretty short and sweet for once, and just wanted to check in to say I’m still here, I’m having some good days, and I’m currently relaxing and soothing my joints in this LOVELY bubble bath cracking up at this book and waiting for Love Island to start at 9pm… what’s there to complain about!? ;-).

Joey

xXx

bath.jpg

 

 

A quick update

I have had so many of you getting in touch to check I’m okay and send your love (thank you!) – so I just wanted to say how much I appreciate it and post a quick update on here.

I am officially sick of the sight of my bedroom! I’m now able to stand easily and walk around for about 10/15mins at a time but I haven’t yet conquered the sitting down comfortably without getting those nasty electrical pulses going down the legs, and my back completely stiffening up like an ironing board – before having to head back to bed in a huff.

What’s helped? Stretches. Stretches stretches stretches every few minutes – and a session on the foam roller when I’m feeling cocky. Though if I roller my back too much then it gets ‘angry’ and I end up getting stuck on the floor for a little while!

Also, my Forever Living Heat Lotion is a god send and soothes my lower back. It’s pretty much Deep Heat but we all know I’m a lover of the aloe so that’s my go-to one.

By some miracle I’m sleeping like a log (the pain is exhausting so luckily I’m shattered and I fall asleep easily). Each morning when I wake up it gets easier and easier, so I’m just being patient with myself, and hopefully in a day or two I’ll be feeling more human. Mustn’t get inpatient.

I’m very lucky to have such supportive friends and family. Usually within about a minute or two of posting, my mum and dad are both on the phone asking if I’m okay. Mum will usually then send me lovely hourly ‘whooaaahhh here comes a hug’ messages for a day or two! And Wayne of course is amazing looking after me the whole time, giving me reassuring cuddles and making me laugh when I cry.

Joey

xXx

Possibly the effect of too many painkillers but just humour me…

So it’s midnight on Friday night and I’ve been driving myself a little insane for the last 36hrs or so… mainly because I’m currently unable to walk or sit down due to an unfortunate sudden onset of sciatica. Or at least I’m hoping it’s sciatica and nothing more serious but my god I’ve not had it this bad in a while. Mainly due to the fact that I can’t put one foot in front of the other (either foot on this occasion; most of the time I only get it in one leg at a time), but it’s a lot more intense when it’s in two legs because when it gets you, you lose the ability to engage your core and just standing up straight is pure agony. Sitting is also agony. So bed it is!

Unless you’ve suffered with slipped/herniated discs before or any other similar spine injury, it’s hard to explain to people how unsettling and scary the pain is when your back ‘goes’.

Now, I may have taken one too many painkillers, but it always makes me feel like my spine is like a really wobbly tower of plates or pebbles that’s stacked up, and one wrong move could send it tumbling. That’s obviously a biological dramatisation, but anyone who’s suffered in this way before will totally get it. Cue google images to help show what I mean…

You get my point.

There’s not a lot I can do at the moment other than rest up and wait for it to pass. All attempts I’ve made to do my physio and stretches has just angered it and set me back a few steps, so I’m sticking with the painkillers and some, clearly, much needed rest. I’m feeling very frustrated, hard done by, and pissed off because I don’t even think I did anything in particular to trigger it.

Anyway, positive mental attitude let’s do this… here’s to hopefully waking up a lot more comfortable than when I go to sleep.

Night y’all.

xXx

Highs and Lows.

This week has been a funny one. It’s taken me a few days to blog about this because I’ve been so disappointed and pissed off with everything; I’ve just needed some time to get my head around things.

The week started off with some really encouraging news about my hands. After six weeks of sexy-splinting, my physio said I’m good to start weaning off them. My wrist strenght is nowhere near where it needs to be so I’ve got some exercises and bands to help build up my strength. Fingers crossed (not literally for me unfortunately) that the pain starts to ease up.

I then hit a bit of a bump in the road as I went to the dentist for a check-up and to get them to look at my ‘clicky’ jaw – which has been getting really bad recently – I’ve been waking up in the mornings unable to shut my mouth (no jokes please!). It’s quite scary and I have to keep moving it throughout the day to make it feel more comfortable and keep it in position. Anyway, my dentist had a good look and it turns out my jaw is displaced, and he is certain the discs in the jaw joints are degenerating. And why is that? Yes… my stupid Psoriatic Arthritis strikes again.  So I’m going back next week to get a mouthguard fitted which I’ll need to wear at night for the next three months – joy – and then if it’s still no better, I will need to be refferred to a specialist for some laserlight therapy. Oh and my teeth are crumbling too as a result, so I’ve been prescribed some special toothpaste to help strengthen the teeth (extra flouride I think) and need some fillings to help protect them.

It might sound like something really minor to some people, but it’s just not what I need – mentally or financially. I just really wanted a break from anything ‘new’ happening as a result of this stupid PSA. I try so hard to be an upbeat person the majority of the time but I’ve really struggled this week – it’s just been the straw that broke the camel’s back.

When I left the dentist and headed towards the office, I was really tearful at the news and got really worked up. I ended up having a massive panic attack at Clapham Junction and had to head back home. Work were really understanding and told me to take the afternoon. Which I so so appreciated. Plus – I wasn’t really in any state to be around people! Wayne was a babe and met me on my way back home in his break to give me a cuddle and a pep talk which really helped.  I’ve spent the rest of the week a bit emotional (for obvious reasons) but I’m on the up again now and am feeling a bit better.

I’ve always said this blog was mostly going to be for me to vent my feelings so I’m glad this week that I have this space to do so.  I still get upset writing this but it’s definitely therapy for me. So it’s not a cry for sympathy I promise… I’m fine :-).

im fine

In other news – in my last post I wrote about going on holiday. We had the BEST time. Too many laughs and too many amazing memories including epic road trips, awesome parties and brunches, immense honky tonk bars and getting drunk and deciding to get matching tattoos that we don’t even regret. I had a bit of a blip for a couple of days where my hands were causing me a lot of pain, but otherwise my back held out and my joints were amazingly absolutely fine!

Joey
x x x

 

When train ads read your mind

So I’m sat on a Southern rail train on my way to the US for the most EPIC holiday with my favourite girls, and I look up and see these two ads staring straight back at me…

(Sorry – I’m posting this from my phone so you may not be able to quite see it)

Pic on the right – HOLIDAYYYYY

Pic on the left – an ad for joint and muscle pain relief

It’s a stupid observation but it these two ads are totally reflecting the juxtaposition of excitement and worry in my head all at once. The holiday being the angel on my shoulder and the joint pain the devil.

Me and my two besties are heading off this afternoon on the most epic road trip across America – we’re flying into Atlanta, picking up a mustang (yaassss) and the driving on to Nashville, New Orleans and Houston – all in just under 10 days). Excited is an understatement!!

But as my fellow PSA sufferers will know, there’s lots to prep when going on holiday.

Medication – luckily this hol falls in between my Humira injections (I take it every other Friday so I took it last week) and the MTX I take every Monday – so I’ve dosed up today and I’ll be fine to wait till I’m back to take my next one on Weds morning (just). So no doctors note or airport declarations for me this time.

Pain relief – packed a few codeine / naproxen / omeprazole just in case I need it. With lugging heavy cases around and sitting on long haul flights/car journeys and being on our feet exploring all day everyday for the next few days, I’m being sensible by taking it.

Stretchy bands and spikey ball – my back will most likely be the first thing to go if anything does, so I’m prepped with my faithful spikey ball for loosening tight muscles and my stretchy band for stretching limbs and easing aches and pains.

Anyway it’s almost time to get off the train for my next change en route to Heathrow.

I’ll keep you updated along the way on our journey!

Over and out!

Joey

x X x

I’m either paranoid or a hypochondriac…

I’m most likely being a bit of a hypochondriac – but let’s be honest I seem to be having ALL the joint issues these days, so I’m naturally feeling a little paranoid. But I’m just wondering if any of my readers suffer the same thing before I convince myself I have yet another problem to face 🙈…

For the last few weeks I’ve had a really ‘clicky’ jaw. Does anyone else have this? I don’t grind my teeth at night but I do find I’m clenching a LOT and wake up and my jaw aches. I’ve been reading up online about it and what I can do to soothe it – and obviously google says I’m either dying / got cancer / got something called TMD?

TMD stands for Temporomandibular Joint Dysfunction which is a term for pain and dysfunction of the jaw and joints which connect it to the skull.

Now I’m hoping it’s not the above but it sure is annoying. My jaw basically pops every time I open and close my mouth.

Apparently it can come on with stress, but nothing is telling me how to relieve it. It can also be common in people with arthritis. If anyone has experienced something similar and has any advice please do let me know! In the meantime I’ll be trying heat, ice and booking in to see a dentist (apparently having a boyfriend who works in dentistry isn’t enough and he can’t help me!).

Joey

Xxx

PS for all of you who have been asking me how I’ve been getting on with the old sexy splints – THEY’RE.SO.ANNOYING. I’m still struggling to get to sleep each night – and I tend to throw them off as soon as I wake up in the night and spot a hint of sun rising. But I’m halfway through so I’m still giving them a chance – my wrists and fingers are feeling a little stronger but still get extremely sore towards the end of the day. It tends to spread to my whole arms when I’m having a really bad day too. I’m on the countdown to my next therapy apt in June, so ill keep you all posted.

When hypermobility becomes a real pain…

joints

I’ve always known that I had pretty good flexibility from a young age.  I was born with a ‘clicky hip’ (hip dysplacia); my knees bend backwards way too much, my elbows and writsts twist round a little too far and my fingers bend backwards too weirdly. And of course my spine is too flexible – which has caused me a LOT of trouble in the past with my slipped discs, scoliosis and kyphosis. It’s also another reason I suffer from sciatica a lot; where my sciatic nerve gets trapped easily in my lower back and pelvis. I never really thought it could do any damage though; until now.

For the last few weeks I’ve been suffering terrible stabbing pains and constant ‘aching’ in my hands and wrists – to the extent where I find I can’t type or write some days (not ideal for work) and it keeps me awake at night when I’m trying to sleep. I just want to rip them off the ends of my arms, it’s so frustrating. I’ll also wake up with numb hands and pins and needles in my fingers (god knows what I’m up to in my sleep). I was starting to worry it was a flare up of my Psoriatic Arthritis so I went to see my consultant who, luckily, quickly dismissed it. She did however recognise it was a problem.

She referred me to a neurologist a couple of weeks back, and off I went for some tests including an EMG (Electromyography) test.  It involved being hooked up to numerous cables and pads and having electrical currents sent through me to make my muscles jump and look for any abnormalities in my skeletal muscles and the nerves that travel through them. I’m used to being a bit of a lab rat so I embraced it and surprisingly didn’t find it too bad, albeit a little uncomfortable with all the electric pulses. I learnt a lot too – my doctor was very lovely and didn’t mind me asking lots of questions throughout.

As he talked me through what he was doing during the tests, he also showed me the results that were coming up on the screen – he said I had a mild form of Carpal Tunnel Syndrome – which is the compression of the nerve in the wrist, where it gets ‘caught’ inbetween the ligaments in your hand known as the carpal tunnel. (The nerve travels from your spine all the way down your arms and through to the ends of your fingers – well, all but your little finger for some reason). For anyone that knows me, one mention of the word ‘nerve’ and I just go numb – always have done from a young age – can’t deal with it for some reason, it’s like people who faint at the thought of blood! So let’s stop talking about nerves now.

Whilst I was pissed off that I was given ANOTHER thing to deal with (what on earth have I done in a previous life!?), I haven’t really been too bothered or upset, mostly annoyed that it’s stopping me from carrying out simple everyday tasks (like holding my phone or typing/writing at work). It’s also why I haven’t blogged in a few weeks.  I was told to wait to be referred to see a Hand Therapist for physio to get started on treatment.

I had my first Hand Therapy session last week where my lovely new physiotherapist, Nina, talked me through everything and had a look at my joints. Literally within seconds of looking at my hand and asking me to do a couple of stretches, she told me I was ‘extremely hypermobile’. Now like I said I knew I was a little hypermobile but ‘extremely’ was new. I kind of laughed it off but she explained more about it and how she thinks it’s caused my carpal tunnel-like symptoms in my hand.

Biology time: If you’re hypermobile, it basically means that your ligaments are more ‘stretchy’ and are able to move and extend more than they should. Whilst your bones are attached to your ligaments, they’re not meant to move into the positions that your ligaments push them to; so eventually, after a while, the damage kicks in and the effects of years and years of ‘overuse’ and ‘overbending’ means that you end up in agony.

Whilst that worried me with thoughts of ‘how bad can it get’ and ‘how painful will it be in my later years’, what she did say is that with a lot of strengthening, and a few months of special joint exercises and wearing splints at night (sexy), I should be able to reverse the pain and learn how to control it.  If it doesn’t get any better in the next couple of months, they may well recomment surgery in my wrist to help free the nerve from the pressure in the carpal tunnel.

So, that brings me up to date.  I’ve now got splints which I need to wear at night on both wrists to keep them straight, and some ‘physio putty’ (aka the world’s toughest play-doh) to help with the joint and muscle strengthening, and hopefully over the next six weeks I can minimise the pain. I’ve also learnt not to push my limbs where they shouldn’t be pushed – like locking my knees back (bad habit) and overstretching my arms/hands.

Right, I’m off to go rest my hands after all this typing…

Joey
x X x

splints

^ My VERY ATTRACTIVE splints ^