Hello…

… yes, it’s me. I’m back. Again. Sorry for the silence. Again.

It’s been another wee while since I popped my head around the door of the blogging world a couple of months back to promise I hadn’t gone anywhere. I  had hoped to be back here sooner than this, but it’s been a crazy few months as Wayne and I have been busy settling in to our new Manchester life and exploring the city with loads of lovely visits from our nearest and dearest friends and family.

I’m currently sat at home on a stereotypical Sunday afternoon – cosied up in the living room with 50 billion candles on, my FAVOURITE Disney film in the background (pure accident as it was on the telly already but SO glad I stumbled upon it) – Beauty and the Beast if you need to ask and don’t know me well enough 😉 – curled up in a throw on the sofa with my laptop and a cuppa. It’s cold outside – the weather has REALLY turned recently – the winter evenings are well and truly here… but I’m feeling a little bit smug in the fact that usually, at this time of year, I’m in pure agony with joint pain as the cold weather takes it’s toll. For some reason… I’m not feeling it just yet. And I’m really hoping that it doesn’t come looking for me for a little while longer.

Okay, so it’s been a while since I’ve updated you all where I’m at health wise.  And loads of you have been asking me (thank you) so – for my benefit and much as anyone else wondering – here goes.

“WHAT IS SHE ON ABOUT?”
Hi! I have Psoriatic Arthritis. Psoriatic Arthritis is an immune system disease. Basically, my silly immune system thinks that my body is full of bad foreign bodies, so it is constantly attacking itself. In my case, resulting in joint inflammation, pain and bone deterioration. I have it in my feet, hands, lower back and pelvis. 
I take Methotrexate. Methotrexate is is a chemotherapy agent and immune system suppressant. It tries to stop my cells from attacking themselves. 
I also take Humira. Humira is a Biologic drug – which injects man made antibodies (“good ones”) to block the inflammation and kill off the bad ones who can’t think straight and are attacking me. 

I’m used to injecting my methotrexate weekly and Humira fortnightly with relatively few side affects (I used to take the methotrexate orally at first, and was fighting constant nausea, dizziness and headaches, so I switched from that after a few weeks and the injections have been heaven compared to those nasty tablets).

But…

I’VE BEEN MEDICATION FREE FOR THREE MONTHS!

Not through choice, initially. I was unable to continue my prescriptions when i first moved up here as I’ve (obviously) had to transfer hospitals from Guy’s Hospital in London to somewhere up here. Luckily it was a relatively short process to get the referral as my new GP put me through as urgent. However, it did take a while to see my new Rheumy at Withington Hospital a couple of weeks ago, so when my meds ran out, I spent the first few weeks in agony. It really brought back all the memories of the constant pain I was in before I was diagnosed).

But recently it’s started to get better and I’d say on the pain scale of 1(what pain) to 10 (I can’t go on) I’m about a 3. So I’m feeling SMUG. CHUFFED. CHUFF TITTIES.

What’s one of the best things about being off the meds? I feel HEALTHY.  One of the most annoying problems with taking immune suppressing meds is that – surprise surprise – you get ill ALL.THE.TIME and catch anything and everything going. You can catch a common cold and have it for WEEKS.

Now, I am very aware that I do need to get back on them sooner or later because with my immune system disease comes a process of joint degeneration – and I really don’t want that to get any worse, because it’s irreversible. But I do want to have a conversation with my consultant to try and come off the methotrexate. Chemo isn’t good for anyone and shouldn’t be taken out of choice. So if I can come off of that I’ll happily continue with my biologics.

For now, I have been given a new prescription for methotrexate – but it’s for tablets – which I’m not prepared to take (because of said side effects). So I’m holding off to talk to my consultant next week to talk about that.

I’m really keen to help shape the future of these meds and how they’re used. And for a little while I’ve been wanting to get involved in trials and studies for people like me with Psoriatic Arthritis – which is still relatively under-researched. I have some exciting news on that front which I’ll be able to tell you all about in a couple of weeks.

I will definitely keep you posted (promise).

Joey

xXx

P.S Here’s me at Withington hospital two weeks ago having ALL the tests in the sexy backless gown. Hand x-rays, foot x-rays, chest x-rays, a billion pints of blood and talking through my history to a group of medical students. I’m happier than I look ;-).

jo hospital

 

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 ^

 

 

 

Here goes…

I’ve finally done it… I’ve got my own bloomin’ blog! I have been pondering setting one up for so so long. For reasons I’m still not 100% sure. I mean, there are so many I should probably decide on just one (or in reality, I know for a fact I’ll touch on them all):

  • To share my experiences. Are they that interesting? Really? I absolutely doubt it. But I’m almost 100% sure I’m not alone in what i’m going through… so I’m hoping to connect with like-minded people with Psoriatic Arthritis (PSA) or any other chronic disease.
    I also want to share what it’s like to have PSA. I will not be playing the victim, that’s not my style, but if I can help educate others what it’s like and how to understand those of us with PSA and our struggles in day-to-day life – well, that’d be something.
  • Therapy. They say writing down your feelings can help relieve stress and give a sense of calm. I’m not sure that many people will ACTUALLY be interested in what I have to say. But what the hell, it might just help me. Let’s see.
  • Ride the emotional rollercoaster. Some days are great, some are shite. Let’s see where we end up.
  • Fad-tester. I. LOOOVE. A. FAD. And I’ll buy ’em all. From physio equipment to healing crystals, veganism to accupuncture mats and silk pillows. I’m openminded and always on the hunt for more!

My name’s Jo. Joey/JoJo/Joanna (only when I’m in trouble). I’m just about to turn thirty next month and I live with my boyfriend in Crystal Palace London. It’s a bank holiday Monday afternoon, and I’m sat on my rug, LouLou (Louis Walsh once sat on it – don’t ask!), cup of coffee in hand, trying to work out where to start.

Here goes…

Joey xxx

me