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

 

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

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 ^

 

 

 

Sunday night karma?

There’s nothing better than a weekend of little to no plans. It doesn’t always happen, but when it does, it’s sheer BLISS.

Though it’s a real shame my body doesn’t always agree.

I had plans on Friday night with the girls, but it was dinner at mine so none of the usual required late night trekking across London to get home after a day at work (sorry girls, just you!) which is exhausting enough most of the time.

For the remainder of this weekend, I have just tried to relax; so I’ve been doing a bit of life admin, a bit of work from the comfort of my sofa and I even treated myself to a manicure today for the first time in years. Oh yes and a few hours spent catching up on the latest Grey’s Anatomy and a whole week’s worth of Survival of the Fittest (which is totally filling the Love Island hole in my life right now so I’m not even sorry 😉 ).

But unfortunately, it’s now Sunday night and I have been in agony all day, with the oh so recognisable effects of Sciatica setting in.  I get really frustrated that I can no longer spend a few hours on the sofa trying to relax my mind from everything going on because I just get punished with the most painful back ache. I’m now struggling to stand straight and I’m hobbling around like no-ones business.

I’ve not yet found a way to deal with my frustrations that come as a result of this disease, and having my back problems make it 1,000% worse on bad days. So this evening I’m just taking it out on my keyboard writing this and hoping that an evening on the mat with the dumbbells helps ease the stiffness and pray that I get a good nights’ sleep so that I’m back and better for the start of another week.

In other news I’ve got another apt with my Rheumatology nurses tomorrow – I can’t wait to tell them that I’m now off all of my painkillers (which is probably why the pain today is a shock to the system – I must have been getting cocky). But I have been having some side effects from all the biologicals and the chemo so we’ll be discussing those and seeing what we can do to reduce them. But I think I’ll save that for another post!

Have a lovely and peaceful Sunday evening, everyone.

Joey x x x

 

My secret weapon

My Secret Weapon

I’ll give you three clues:

1. It comes from a plant
2. It’s something you drink
3. It has amazing healing powers

It’s Aloe Vera!

aloe

Who knew it could be so amazing? Well, as it turns out, quite a few people!

I recently finished the Clean 9 – a nine-day cleanse based on drinking lots of Aloe vera in order to clear your body of all the nasty toxins, and kick-start healthy eating habits. It’s full of vitamins and minerals and balances your immune system.  It’s the perfect post-christmas detox and I’ve done it a few times with huge success.

I won’t lie, the aloe can be hard to swallow – it doesn’t taste the nicest! But the benefits are just so so worth it. Over the course of days 1 and 2 you’ll have lots of it (around 8 shots a day) morning, lunch, early evening and before you go to bed.  And then from days 3 to 9 it’s just two shots a day, first thing in the morning.  Paired with nine days of clean eating, shakes, regular exercise and cutting out alcohol or caffeine, et voila – you have your cleanse.

Aloe’s known for it’s internal healing, cleansing and nutritional repair – so seeing as I have an Auto-immune disease, what harm could it do! Here’s what I managed to accomplish in nine days:
1 stone weight loss and a total of 26cm (from various body parts of course)
My hair is shiny and really starting to grow (and that’s not the hair extensions!)
My nails always chip and break – apparently that’s down to the Psoaritic Arthitis that’s in my fingers – but my nails have grown so much in the last week. 
I’ve had a few outbreaks on my face over the last week, but that’s just the toxins leaving your body. My skin is now clear and glowing  
I have been waking up with lots more energy in the morning, and I’m also finding I get a lot more tired in the evenings towards bedtime (I think that’s the lack of caffeine interferring with my bodyclock) so I’m sleeping like a baby
Despite these rediculously cold temperatures, I’m actually getting less and less joint pain which is SUCH a good feeling and a release from the constant pain

THE BEST BIT…

I think it was day 7 of the cleanse, and for the first time in over a year and a half – I woke up with ZERO pain!! I couldn’t believe it, I almost cried! That nagging morning stiffness and having to get up half an hour earlier than I needed to, just so I could take my painkillers so that I could leave the house in as little pain as possible – it had vanished!
Don’t get me wrong I still get it now on and off, but I’ve never noticed as much progress as I have these past few days.
As a result, and after being on my meds for over 18 months I’ve:
Halved my codeine dosage (I’ve genuinely forgotten to take it a couple of times!)
Stopped taking Naproxen completely

Just the other day I was clearing out some of my stuff (a typical January new-year-new-organised-you situation!) and I came across a notebook which I’d used to write down all of my medication and what I had to take each day. It was getting to the point where I would lose track of what I had to take and when, let alone keep up with all the doctors, specialists, physio and rehab appointments. I’ve been on all of these meds for over a year now – and it doesn’t even include the Humira injections which I started back in September.

IMG_1600

Luckily, at the moment, I don’t recognise this and I’m glad to just be focussing on taking the Humira and the Methotrexate.

I’m planning on carrying on taking the Aloe Vera each morning and the clean eating lifestlye for as long as possible.

I must say, actually, I wasn’t doing it on my own this time around – I managed to persuade Wayne to do it with me too :-). He did struggle a little bit, but all in all had a great experience and it was fab to do it together. It made evening meals a lot easier too! Wayne also lost around 10lbs and is sleeping better with more energy.

—————————————–

My mentor throughout the cleanse, Rebecca, has been brilliant. When you sign up to take part, you’re also signing up to join online support groups with thousands of other people reaping the benefits too. It makes a world of difference knowing that you’re not on your own. You can get in touch with her on Facebook for info and support – give her a message here.

I am in love with the aloe so much that I’m now getting involved with Forever Living. So if you’d like more information on the Clean 9 or even just the aloe gel – take a look at my Forever Living site or get in touch with any questions.

aloe gel

The good sort of pain…

With all of my back problems (my slipped discs, my scoliosis) and of course the Psoriatic Arthritis in my pelvis and feet (did I mention that already) 😉 I haven’t been able to work out properly for the last couple of years without being in immense pain. I’ve been doing Physio and Pilates which helps for sure, but cardio in particular has been a no-no for me especially anything where I have to be stood up on my feet.

My two main disabilities really work against each other sometimes. They tell me the best thing for keeping your spine mobile is exercise; yet I can’t excercise because I’m in so much pain with my arthritis – especially with it being in my feet/toes. Sometimes, when the PSA pain is so bad, I can barely move without being in agony, which results in my back pain escalating because I’m not able to be as mobile as I should be to keep my spine in check. So ridiculous.

BUT… I got the all clear a couple of weeks ago to be able to go back to the gym – yaassss! I am still limited to what I can do – I can use the cross trainer and recumbent bike for cardio, and lots of the weights. A benefit of all my core work from rehab physio is that my posture is SO much better than it used to be, which also helps get the best out of my workouts. To top it off my local gym has got a huge space for mat work on the floor with all the foam rollers, weights and bosu balls I could dream of.

I’ve been really poorly for the last three weeks with a nasty chesty cough infection which just won’t go away. I’ve been trying to ignore it and hope it’ll piss off but it’s going nowhere fast; so this week I gave in to it and have taken time off work for the rest of the week. It’s easy to forget I have next to no immune system! So any sign of the smallest infection from someone and I’m taken down almost immediately (I can thank the mtx and humira for that!). If I don’t take time out to really rest and do what my body needs me to do, I won’t get better.  I also have plans with different friends/family for the next four days in a row – and unlike my ‘normal’, ‘healthy’ friends, I have to plan for that and make sure to take things easy in advance.

Having been locked up in the flat all day by myself and not uttering a word out loud to anyone, I was starting to go a bit crazy. So I decided that, despite feeling shitty, a workout would do me good.  I dusted off the gym kit and met Wayne after work and we headed over to the gym to get inducted and stay for our first session.

I genuinely never thought I’d be excited about going to the gym… I had forgotten how good it feels when you leave after a successful workout. And you know what, I genuinely am really looking forward to that good kinda pain and soreness you get the next day when you wake up…

Bring it on!

Joey
xxx

gym