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

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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 ^

 

 

 

Breaking point aka -2• in your living room

Ridiculously cold temperatures and snowy stormy weather affect everybody but in particular;

1. People with any form of Arthritis and other joint pains

2. People with slipped / herniated discs and scoliosis/kyphosis

3. People who suffer cramping back muscles through stress and reductions in temperature

4. People with current undiagnosed loss of feeling and intense pain in their hands and are currently waiting on further neurology tests and hand physio

5. Migraine sufferers

6. Psoriasis sufferers where your skin comes out almost instantly in red blotches all over

7. All the poor bastards who suffer all of the above. AKA muggins over here.

The Beast from the East / Snow Storm Emma is in full force here in the UK, and I thought I was doing pretty well… until the boiler in our flat broke last night! I meannnn I’m often one to exaggerate slightly I’ll admit. But I’ve NEVER woken up from brain freeze at 3am and had to sleep in a ridiculous amount of layers! Even the electric blanket was barely doing its job. There was a full on breeze in our bathroom.

So with no heating and no hot water in the flat, Wayne left for work and I managed to escape to the lovely Dalhousie coffee shop in Crystal Palace (after skidding my way up the icy hill) and got a few hours’ work done. But I was in absolute agony with my joints, especially my hands, so I had to give up mid afternoon and make my way home. I also had no idea that that’s where all of south London’s babies seem to meet for their mid-morning cry-fest. Not ideal for conference calls (sorry again team!)

Sadly, we were supposed be heading down to Devon for the weekend to celebrate my Aunt’s birthday as a surprise, but with more snow forecast and the UK on red alert, it was never going to happen. So, Wayne and I have packed up our things and are heading to my Dad’s to seek some refuge and enjoy some central heating which I will never take for granted again!

Stay warm everyone!

Joey

xXx

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

 

Fail-safe planning?

The winter months can be pretty daunting for those of us with Psoriasis and with PSA. With the chilly temperatures we’re much more prone to flare ups and Psoriasis breakouts. Going from hot to cold, the early morning chills, having the stuffy heating on at home; all things which can be troublesome.

With the Psoriatic Arthirits, I’m finding the frozen temperatures affect you even more; I’m having to get up earlier to get my joints moving and give my painkillers more of a chance to kick in, and I find I’m walking slower as I brave the coldness and joint pain at once.

December also usually means a huge spike in social activities; catching up with friends to celebrate and organising and attending work parties. It’s also the busiest time of year for birthdays with my friends and family; and as most of my friends are turning 30 this year, it’s definitely a time for partying! I also have to work out where in the country I am over the Christmas holidays – with separated parents at each end of the country, and finding time to co-ordinating seeing Wayne (either in Leeds or London) who also has his own plans in London can be stressful.  For the rest of the month I probably have maybe two nights in a week where I don’t have any plans at all. An easy task to anyone else I imagine, but I do have to just be that bit more careful.

Sounds like a really tough problem, right ;-). Ordinarily, no, but add in the anxiety, PSA and generally just not knowing how I’ll wake up feeling on each day… yeah you get the picture.

I’ve had a really really good last few weeks, with a 100% hit rate for attendance! So, for my own sake more than anything else I wanted to list my highlights since I last blogged…

  • Lasted the whole night at my Christmas party. Party organising is my absolute favourite; so there was no way I was going to have a bad night there. I was determined – and ultimately managed the whole night, without sitting at all, right until ‘lights up’. Yes I may have swapped to wearing pumps from about 11ish onwards, but who cares!
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  • Spent a weekend in Paris with some of my oldest friends. We had a brilliant weekend and I was seriously worried about f*cking up the plans, especially after my last episode of anxiety in Birmingham. In your face PSA – we walked over 12k each day all around the city in the freezing cold. I couldn’t walk quite as fast as everyone else but it really didn’t matter and we had the best time.
    Screenshot-2017-12-11 Alex ( alex_c_mcewan) • Instagram photos and videos
  • The weekend just gone I was in Birmingham again for my friend’s 30th; this time around was a completely different story to said last experience. Again, another kick in the balls to PSA. Even getting snowed in didn’t stop us from having a fab weekend, and we made it back in one piece with not a single hangover between us ;-).
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What helps me with my anxiety is the ability to be planned. I’m also having to take a few Mondays off of work in order to recover. Luckily I have a fair bit of holiday to be able to do that with this month. And it’s exactly what I’ve been doing today… heaven!

In other news, I’ve been able to lower my Methotrexate dosage by a quarter, which feels so good. I’ve also decided to take it as a weekly injection rather than orally. Mtx comes with so many side affects and I was constantly feeling so so nauseous and would have dizzy episodes now and again too.

So I’m now injecting myself weekly for the Mtx and fortnightly with the Humira.  My doctor is happy for me to start scaling back on my painkillers which I’m desperate to do. Though I might need to just wait for the Christmas period to pass and I can focus on that in January. Bring it on!

Joey

x x x

The eye of the storm

It’s a funny one, anxiety – it can come at you in many different ways and often catches you completely off guard. I suffered my most recent bout of it just this weekend – and it sure loves to try and ruin you whether you like it or not.

We’re all different. It can affect you in many different aspects of your life – I find it picks at your insecurities. It’s nasty like that.

Anxiety isn’t just about giving you that nervous anxious feeling in the pit of your stomach. For me, I can often feel it coming on. Think of it like a swirling storm brewing in the distance, and you can see it getting closer and closer but you can’t run away from it. You can run for cover for a short while – find some shelter and shut it out – but eventually it brings down the walls and you hit the brunt of it. I have suffered from depression in the past – and I’m so proud of myself for saying ‘no’ to the doctor when she offered me anti-depressants – and the fight or flight feeling you get with that is very similar. Once you get it you just have to ride the storm and fight to come out the other side.

For chronic pain sufferers, anxiety seems to make everything seem 100x more painful too. Every ache and pain, every movement.

It also makes you imagine the worst scenarios in everything. I hate being any form of centre of attention – and sometimes the anxiety can be so bad I genuinely get glued to my seat I can’t even walk across a room, worried that people will be looking at me. Sounds stupid I know.

I spent the weekend with my my closest friends celebrating one of them gettting engaged. With a whole long exciting weekend planned, filled with celebrations and spending the weekend all together, It got to yesterday afternoon and that’s when I hit the eye of my storm. I suddenly felt so so overwhelmed and my back and joint pain increased by what felt like a million percent. I started scenario planning and playing out the worst case scenarios in my head – for no apparent reason to the average person. What if my joints inflame even more and I have to spend the next few days bedbound? What if my spine locks and I can’t walk?

We’d been out since midday and it had got to about 5pm and the night was still to come, with everyone planning on staying out for at least another few hours. My ability to focus on just having a normal conversation was flailing and all I wanted to do was hide away, curl up and have a cry. Again for – what seemed to everyone else – no reason. Eventually, I physically couldn’t hold the tears back anymore and had a bit of a breakdown between walking from one bar to the next. At that point I had to call it quits and give in. Wayne took me back to our AirBnB place in a cab and we made a quick exit. I was truly embarrassed and felt an absolute failure. All I could feel was pain and humiliation. What a drama queen. How rude for just leaving without saying bye to everyone. All I kept worrying about was what everyone would think and I was just getting more and more upset. I’m bloody thirty for God’s sake… who just loses it out of nowhere?! Time for home – for peace and quiet, a cup of tea, a cry and a hug and everything started to feel a little better. Wayne just knows what to do when I get low like this. Just being there, giving me a cuddle or a knowing look is sometimes all you need to feel more calm, more safe and secure and less lonely in it all.

A few hours later everyone else came home and we had a great evening – very chilled with some crappy tv, pizza and silly games. I soon forgot for a little while how shit I had been feeling.

It really one of the most draining feelings, and all I can do is write about it here and keep positive; build back up my walls and wait for the storm to pass – because it absolutely will.

Joey

xXx