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

 

I’m still here!

Ok, it’s been EMBARRASSINGLY LONG since I last posted. I’ve been wanting to write for a while now, but as ever, hate to be the one breaking the silence. But fuck it (sorry mum) the longer I put it off the more awkward the silence!!

So what’s been going on since I last posted? Ohhh you know, same old same old. Oh yes, I now live in Manchester 🥳. I’ve had a few rough months mentally and a verrrry scary dose of back problems. But I’m through the other side now. Loads to fill you in on, and I’ll get to it very soon. But for now I just wanted to shyly say I’m still here, still fighting and still typing.

Missed y’all!

Joey

x x x

Makes total scents

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Anyone who knows me know I L.O.V.E a good candle. I’m desperate for the nights to start drawing in earlier so I can get the candles out in the lounge every evening. And just ask Wayne, it’s every night – without fail! Honestly I’m not sure what makes me happier than curling up in our Zen Den for a nice calm chilled evening! I’m not sure if it’s the warmth and the cosiness that’ does it for me, or the smells they create. Tea lights, smellies, cute holders, even those battery operated flickering church candles. Whack on some fairy lights too and I’m even more content.

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Recently I’ve been getting in to aromatherapy and using certain smells to create certain moods. We all know aromatherapy and essential oils are good for stress – and considering my back problems, my psoriasis outbreaks and even my psoriatic arthritis were brought on by stress – I am trying lots of different methods to try and combat it; these oils being one of them.

Luckily I’m not suffering any flare-ups at the moment, (*touches alllll the wood in sight*) but I’m not getting complacent and I’m doing lots to create a very calming environment in the flat, and – especially at night time – make sure I’m chilled, content and relaxed. Here’s what I’ve been adding in to my evening routine;

  1. I improved my evening skincare routine – I recently treated myself to a facial and remembered how GOOD it feels. I wasn’t able to have the treatment I’d booked in for because my skin is uber sensitive due to the chemo, so I opted for a less-invasive one which was still really good and included some light-therapy. The calming, therapeutic, massaging movements on your face and the heavenly smells that seem to cleanse the soul as well as the skin were so YUM. It made me want to invest a bit more in my evening skin care routine – so I spent a lot of time (and money) with a lovely lady at the Clarins counter in Croydon who gave me some lovely bits to try to add in to my evening routine (I’m a huge Clarins addict) – these things included evening aromatherapy shower/bath lotions and calming plant-based night treatments. Taking more time to wipe away the day not only makes me slow down, but also reflect on the day I’ve just had.

clarins

  1. I take an hour for myself – now, usually I will tend to get in to bed earlier than Wayne who’s often glued to Sky Sports as part of his evening ritual (*eye roll*). So for me that means time to catch up on The Affair / Grey’s / whatever I’m glued to at the time. I love my bed and it’s the best place to retire to after a long day when the nasty PSA fatigue hits me. I will curl up with my favourite pink himalayan salt candle on which just adds to the #zenden vibes!
    salt candle
  2. I invested in the best. product. ever! All candle/aromatherapy fans will have heard of Neom Organics. They have recently bought out a beautiful essential oil diffuser – their Wellbeing Pod. I have been eyeing it up for months in the lead up of it’s release, and so I decided to treat myself. It’s gorgeous to look at, it’s easy and safe to use (I can fall asleep and it will turn itself off after 1,2 or 3 hours) and of course the Neom oils are just incredible. I just invested in the one oil as they’re pretty pricey (but the full set is going on the birthday list as we speak!). They have four that you can use; ‘Scent to…’ De-Stress, Boost your Energy, Make you Happy and Sleep. I opted for the Boost your energy one which has lemon and basil in it and smells heavenly! Not only are the oils great for filling your home with the smell and instantly changing your mood, but it also works as a humidifier so it’s just perfect for my poor old non-existent immune system to help clear the air of nasty bacteria and help alleviate dry skin, sore throats and nose and help with any allergies too. I’m a little obsessed with it at the moment and have it on all the time. I’ve also been putting Lavender oil in it at night time in the bedroom (till I get my hand on the NEOM sleep oil) to help get me sleepy.

    neom pod
    Click here to visit NEOM Organics

After doing a little bit of research into aromatherapy, it seems it’s not just stress it’s good for. It can;

  • Boost energy levels (black pepper, tea tree, jasmine, rosemary…)
  • Speed up healing and recovery (buckthron, lavender, rosehip…)
  • Be a powerful sleep aid (jasmine, lavender, chamomile, ylang ylang…)
  • Enhance our immune systems (lemon, eucalyptus, oregano, peppermint…)
  • Help with stress (lavender, ylang ylang, bergamot, lemon…)
  • Help to control depression (jasmine, lavender, chamomile, peppermint…)
  • Help with aches and pains (lavendar, rosemary, sage, peppermint…)
  • Improve digestion (ginger, chamomile, lavender, fennel…)

I think I need to get my hands on some rosemary and peppermint to go with my lavender and then I think I can look to help boost almost all everything listed above!

So there’s a few things I’ve beeen doing recently to help alleviate stress in my day-to-day, and I must say it does seem to be working so far. I’ll of course keep you posted…

Joey
x x x

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

Possibly the effect of too many painkillers but just humour me…

So it’s midnight on Friday night and I’ve been driving myself a little insane for the last 36hrs or so… mainly because I’m currently unable to walk or sit down due to an unfortunate sudden onset of sciatica. Or at least I’m hoping it’s sciatica and nothing more serious but my god I’ve not had it this bad in a while. Mainly due to the fact that I can’t put one foot in front of the other (either foot on this occasion; most of the time I only get it in one leg at a time), but it’s a lot more intense when it’s in two legs because when it gets you, you lose the ability to engage your core and just standing up straight is pure agony. Sitting is also agony. So bed it is!

Unless you’ve suffered with slipped/herniated discs before or any other similar spine injury, it’s hard to explain to people how unsettling and scary the pain is when your back ‘goes’.

Now, I may have taken one too many painkillers, but it always makes me feel like my spine is like a really wobbly tower of plates or pebbles that’s stacked up, and one wrong move could send it tumbling. That’s obviously a biological dramatisation, but anyone who’s suffered in this way before will totally get it. Cue google images to help show what I mean…

You get my point.

There’s not a lot I can do at the moment other than rest up and wait for it to pass. All attempts I’ve made to do my physio and stretches has just angered it and set me back a few steps, so I’m sticking with the painkillers and some, clearly, much needed rest. I’m feeling very frustrated, hard done by, and pissed off because I don’t even think I did anything in particular to trigger it.

Anyway, positive mental attitude let’s do this… here’s to hopefully waking up a lot more comfortable than when I go to sleep.

Night y’all.

xXx

Highs and Lows.

This week has been a funny one. It’s taken me a few days to blog about this because I’ve been so disappointed and pissed off with everything; I’ve just needed some time to get my head around things.

The week started off with some really encouraging news about my hands. After six weeks of sexy-splinting, my physio said I’m good to start weaning off them. My wrist strenght is nowhere near where it needs to be so I’ve got some exercises and bands to help build up my strength. Fingers crossed (not literally for me unfortunately) that the pain starts to ease up.

I then hit a bit of a bump in the road as I went to the dentist for a check-up and to get them to look at my ‘clicky’ jaw – which has been getting really bad recently – I’ve been waking up in the mornings unable to shut my mouth (no jokes please!). It’s quite scary and I have to keep moving it throughout the day to make it feel more comfortable and keep it in position. Anyway, my dentist had a good look and it turns out my jaw is displaced, and he is certain the discs in the jaw joints are degenerating. And why is that? Yes… my stupid Psoriatic Arthritis strikes again.  So I’m going back next week to get a mouthguard fitted which I’ll need to wear at night for the next three months – joy – and then if it’s still no better, I will need to be refferred to a specialist for some laserlight therapy. Oh and my teeth are crumbling too as a result, so I’ve been prescribed some special toothpaste to help strengthen the teeth (extra flouride I think) and need some fillings to help protect them.

It might sound like something really minor to some people, but it’s just not what I need – mentally or financially. I just really wanted a break from anything ‘new’ happening as a result of this stupid PSA. I try so hard to be an upbeat person the majority of the time but I’ve really struggled this week – it’s just been the straw that broke the camel’s back.

When I left the dentist and headed towards the office, I was really tearful at the news and got really worked up. I ended up having a massive panic attack at Clapham Junction and had to head back home. Work were really understanding and told me to take the afternoon. Which I so so appreciated. Plus – I wasn’t really in any state to be around people! Wayne was a babe and met me on my way back home in his break to give me a cuddle and a pep talk which really helped.  I’ve spent the rest of the week a bit emotional (for obvious reasons) but I’m on the up again now and am feeling a bit better.

I’ve always said this blog was mostly going to be for me to vent my feelings so I’m glad this week that I have this space to do so.  I still get upset writing this but it’s definitely therapy for me. So it’s not a cry for sympathy I promise… I’m fine :-).

im fine

In other news – in my last post I wrote about going on holiday. We had the BEST time. Too many laughs and too many amazing memories including epic road trips, awesome parties and brunches, immense honky tonk bars and getting drunk and deciding to get matching tattoos that we don’t even regret. I had a bit of a blip for a couple of days where my hands were causing me a lot of pain, but otherwise my back held out and my joints were amazingly absolutely fine!

Joey
x x x