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 ^

 

 

 

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