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

 

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

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

It’s a silent ‘P’

Psoriasis.

Pronounced ‘sore-eye-a-sis’. SORE is one word to describe it. Itchy, flaky, niggly, dry, patchy are just a few others. Psoriasis can show in many forms but, in essence, it’s a skin condition where (usually small) scaley patches of dry skin appear on your body.

It’s an immune system disease which causes the over-production of skin cells, suffered by 2% of the population. It’s known to be passed down genetically (my mum also suffered with it once in her younger years) and can be set off by a number of varied triggers from stress to infections and so on.

I was diagnosed with Psoriasis in 2013, aged twenty five. Whilst my mum did also have it, I actually put it down to the amount of stress I was under at the time. I generally don’t deal well with stress – at all. Any sign of it and I’m poorly; it’s like my body finds an excuse to not deal with it. I’ll reflect more on work/life balance and stress in a future post, but for now let’s focus on the Psoriasis.

It can be a nasty little fucker and really affects my self confidence. Sometimes I can get teenie tiny spots of it – perhaps on my elbow or on my side or my back and it doesn’t affect me too much. Places it can be easily hidden.

But every now and again it appears on my head. That might sound like nothing. Easy to cover you might think. Sure. But we’re talking blood, puss (ugh gross, sorry) and flakes of skin all over your head. When you touch it, it’s sore; when you wash it, it stings; when you brush it, it’s irritated. The really bad pics on the left hand side were taken in 2013 when I first got Psoriasis. The one on the right – taken in February of this year (2017) it came back a little, and crept on to my face too.

 

The really annoying thing is that there’s no ‘one treatment suits all’ cure. It really depends on your body and how it reacts. Some people can shift it easily, others not so much. But here’s how I found some of the different treatments out there and what triggers it for me…

  • See a dermatologist – I did try this – along with steroids, steroid creams and shampoos, but nothing seemed to make it budge.
  • Go to your GP – again, for me, steroids and creams didn’t help here, it just seemed to aggrivate it more.
  • Change your shampoo – this soothed it for sure, but didn’t get rid of it. The best shampoos to soothe your scalp are parabenScreen Shot 2017-08-28 at 18.21.29 and sulfate free. You should also make sure that it’s sodium chloride (salt) free, minimising any harsh actions on your scalp.  When your scalp is that sore and has open wounds, scalp-treatment and tar-heavy shampoos (for example T-Gel) will cause pain I can assure you.
    The best shampoo I’ve found to help soothe and reduce irritation is this badboy – Klorane shampoo with Peony. It smells gorge and is just the best.
    It’s not the cheapest (around £8 per bottle available from your chemist or online) but it’s worth it.
  • Reduce your stress levels. Probably the most accurate yet unhelpful piece of advice – I mean, we’d all love to be stress free. But this is my main trigger for psoriasis – hands down. Put me under any form of stress or pressure and you can guarentee I’ll have a little scaly patch somewhere by the end of the week.
  • Reduce your alcohol intake. Alcohol realllyyy affects my skin – from blotchyness to inflammation to spots and now, psoriasis.  I’ve never been the sort of girl to crave a glass of wine in the evening after work – luckily. BUT when I do drink socially I do love my wine… and gin… and prosecco… and – well you get the idea. Give me a couple of days or week where I have social events or engagements and here it goes again, the Psoriasis is back.
  • Be strict on your diet. It’s no surprise that what we eat affects how we function – what we put into our bodies will show on the outside. When I get psoriasis I know I have been eating either too much sugar or bread – or not enough greenage (not sure that’s a word?!). Again, all it takes is a few weeks off-focus and it’s back again.
  • Take a holiday. Now if I could take a week in the sun every time I got a new patch, I’d be broke. Obvs it’s easier said than done. But it really does do the trick (for me at least). Vitamin D is SO good for the skin and getting rid of psoriasis. It of course does wonders for the stress levels too. Get me on that sun lounger asap please!

More recently I have been flake-free which is great (putting it down to my recent holiday to Kefalonia with the mother). However I have started to see a few patches come back again. It can be hard to clear them but by knowing that I can when I put my mind to it, I’m kinda not too bothered. They’ll come and go with stress for me, so I know what I need to do to try to control it. That plus eating some more plant-based food and upping my vitamins and hopefully I’ll be back clear again in no time. Just stay away from my head… pretty pleaseeee.

Joey xxx