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

 

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