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!
    IMG_0996
  • 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 ;-).
    IMG_1086

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 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

#WFH

Today I’ve been working from home. I try and wfh around one full day a week but it does often end up being a bit more than that due to popping out to various doctors appointments each week as well as attending a rehab physio-pilates class every other week – which I loooove. My Physio is the best and she knows me inside out (I’ve been seeing her for the last 3 years every fortnight), but it’s in the complete opposite direction of both work (west london) and home, (south london) so I’ll often go to work in the morning, have my physio at lunchtime and then head home and log on from there for the afternoon. It works pretty well and my work are so good about it.

I try not to take for granted how good my work have been with me and my health over the last 4 years – I’ve been so lucky and they are so understanding. If I am having a rough day or wake up in an insane amount of pain (it happens) I can work from home. It’s pot luck whether I have my work laptop with me though! But if not, my mac will suffice as long as I have no skype meetings that day.

I’ll sometimes wake up with really bad joint stiffness in the mornings. Given that I live on a massive f-off hill, the morning commute can be reallllly painful on my toes and back. But, becuase I’m not clock-watched and am trusted to do the work and get the job done whenever / wherever suits me best, it really helps with my anxiety and I don’t have to stress that my manager will be wondering where I am at 9.00 on the dot. I’ll sometime limp in at around 10am and rather than being asked ‘where have you been’ it’s more likely to be ‘how are you? pain okay today?’ . Which is a real comfort.

Today the pain has been okay, though I am generally much better off sat in a proper office chair at my desk in the office. My kitchen table isn’t quite the right height and the sofa definitely does no favours for my joints. BUT. It’s cold outside and I’m doing lots of proof reading today, so the sofa will do perfectly, along with my favourite throw, himalayan salt candle on the go, and a mug of hot tea.

wfh

I’ve been really stressed about a few things this week, which has resulted in psoriasis rearing it’s ugly head on mine too. And all over my forehead today it seems. A cup of this tea each day (first thing in the morning on an empty stomach) is soooo good for my skin and helps clear it. It doesn’t taste too horrific either and is much better for me than coffee – caffeine just won’t help me on this occassion!  It contains lots of red clover, nettle leaves, dandelion root, burdock root, chamomile and lemon. You can get it from most health shops or online, and it’s not that expensive either. Give it a go if you’re looking for a skin detox – it’ll really combat inflammation, puffiness, redness and any breakouts.

skin purify

Right, that’s enough procrastination for this afternoon! I was planning on wfh tomorrow too as it’s friday but it’s back into the office for me – forgot my laptop charger didnt I. #Fail.

 

Joey

x x x

The difficult fourth post

So last week I finally had the guts to share this blog. Honestly, I was really scared. Most people I know already know the headlines of what I’ve been going through recently with the PSA. It’s not quite the same though as writing everything down into actual sentences. Actual facts. All out in the open for all to see.

I was really touched to read all of the comments from people – I’m not embarrased to say that I cried at almost each and every one of them! I’m a softie I know. But just knowing you’re not alone is so lovely. So thank you.

This week has been full of positives –

Firstly – my Humira injections came through! Halle-bloody-lujah. This Friday I’m off to the Rheumatology dept at Guy’s Hospital to get taught how to do the injections myself. I’ve been told by many people not get my hopes up – there are a few different types of biologicals and I might not be lucky with the first one. But I’m not one to be pessimistic about these things – if I was I’d have given up long ago. I’ll keep you posted on how Friday goes.

Secondly – I did something for me this week. I’ve wanted proper hair extensions for years now. Having good hair is the ultimate confidence booster. And boy do I need one of those where I can get one! With the Chemo, my hair is really weak and it just isn’t growing at the moment. I finally decided to splurge and get a full head from my lovely hairdresser, Steph. I booked a day off work and had a full on pamper afternoon on Monday with Steph. And hey presto I have hair down to my waist (well, almost!) .

When life gives you lemons, flick your hair in it’s face…

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

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