When train ads read your mind

So I’m sat on a Southern rail train on my way to the US for the most EPIC holiday with my favourite girls, and I look up and see these two ads staring straight back at me…

(Sorry – I’m posting this from my phone so you may not be able to quite see it)

Pic on the right – HOLIDAYYYYY

Pic on the left – an ad for joint and muscle pain relief

It’s a stupid observation but it these two ads are totally reflecting the juxtaposition of excitement and worry in my head all at once. The holiday being the angel on my shoulder and the joint pain the devil.

Me and my two besties are heading off this afternoon on the most epic road trip across America – we’re flying into Atlanta, picking up a mustang (yaassss) and the driving on to Nashville, New Orleans and Houston – all in just under 10 days). Excited is an understatement!!

But as my fellow PSA sufferers will know, there’s lots to prep when going on holiday.

Medication – luckily this hol falls in between my Humira injections (I take it every other Friday so I took it last week) and the MTX I take every Monday – so I’ve dosed up today and I’ll be fine to wait till I’m back to take my next one on Weds morning (just). So no doctors note or airport declarations for me this time.

Pain relief – packed a few codeine / naproxen / omeprazole just in case I need it. With lugging heavy cases around and sitting on long haul flights/car journeys and being on our feet exploring all day everyday for the next few days, I’m being sensible by taking it.

Stretchy bands and spikey ball – my back will most likely be the first thing to go if anything does, so I’m prepped with my faithful spikey ball for loosening tight muscles and my stretchy band for stretching limbs and easing aches and pains.

Anyway it’s almost time to get off the train for my next change en route to Heathrow.

I’ll keep you updated along the way on our journey!

Over and out!

Joey

x X x

I’m either paranoid or a hypochondriac…

I’m most likely being a bit of a hypochondriac – but let’s be honest I seem to be having ALL the joint issues these days, so I’m naturally feeling a little paranoid. But I’m just wondering if any of my readers suffer the same thing before I convince myself I have yet another problem to face πŸ™ˆ…

For the last few weeks I’ve had a really ‘clicky’ jaw. Does anyone else have this? I don’t grind my teeth at night but I do find I’m clenching a LOT and wake up and my jaw aches. I’ve been reading up online about it and what I can do to soothe it – and obviously google says I’m either dying / got cancer / got something called TMD?

TMD stands for Temporomandibular Joint Dysfunction which is a term for pain and dysfunction of the jaw and joints which connect it to the skull.

Now I’m hoping it’s not the above but it sure is annoying. My jaw basically pops every time I open and close my mouth.

Apparently it can come on with stress, but nothing is telling me how to relieve it. It can also be common in people with arthritis. If anyone has experienced something similar and has any advice please do let me know! In the meantime I’ll be trying heat, ice and booking in to see a dentist (apparently having a boyfriend who works in dentistry isn’t enough and he can’t help me!).

Joey

Xxx

PS for all of you who have been asking me how I’ve been getting on with the old sexy splints – THEY’RE.SO.ANNOYING. I’m still struggling to get to sleep each night – and I tend to throw them off as soon as I wake up in the night and spot a hint of sun rising. But I’m halfway through so I’m still giving them a chance – my wrists and fingers are feeling a little stronger but still get extremely sore towards the end of the day. It tends to spread to my whole arms when I’m having a really bad day too. I’m on the countdown to my next therapy apt in June, so ill keep you all posted.

When hypermobility becomes a real pain…

joints

I’ve always known that I had pretty good flexibility from a young age.Β  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.Β  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.Β  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.Β  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.Β  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 ^

 

 

 

Breaking point aka -2β€’ in your living room

Ridiculously cold temperatures and snowy stormy weather affect everybody but in particular;

1. People with any form of Arthritis and other joint pains

2. People with slipped / herniated discs and scoliosis/kyphosis

3. People who suffer cramping back muscles through stress and reductions in temperature

4. People with current undiagnosed loss of feeling and intense pain in their hands and are currently waiting on further neurology tests and hand physio

5. Migraine sufferers

6. Psoriasis sufferers where your skin comes out almost instantly in red blotches all over

7. All the poor bastards who suffer all of the above. AKA muggins over here.

The Beast from the East / Snow Storm Emma is in full force here in the UK, and I thought I was doing pretty well… until the boiler in our flat broke last night! I meannnn I’m often one to exaggerate slightly I’ll admit. But I’ve NEVER woken up from brain freeze at 3am and had to sleep in a ridiculous amount of layers! Even the electric blanket was barely doing its job. There was a full on breeze in our bathroom.

So with no heating and no hot water in the flat, Wayne left for work and I managed to escape to the lovely Dalhousie coffee shop in Crystal Palace (after skidding my way up the icy hill) and got a few hours’ work done. But I was in absolute agony with my joints, especially my hands, so I had to give up mid afternoon and make my way home. I also had no idea that that’s where all of south London’s babies seem to meet for their mid-morning cry-fest. Not ideal for conference calls (sorry again team!)

Sadly, we were supposed be heading down to Devon for the weekend to celebrate my Aunt’s birthday as a surprise, but with more snow forecast and the UK on red alert, it was never going to happen. So, Wayne and I have packed up our things and are heading to my Dad’s to seek some refuge and enjoy some central heating which I will never take for granted again!

Stay warm everyone!

Joey

xXx

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 πŸ˜‰ ).

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.Β  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

 

My secret weapon

My Secret Weapon

I’ll give you three clues:

1. It comes from a plant
2. It’s something you drink
3. It has amazing healing powers

It’s Aloe Vera!

aloe

Who knew it could be so amazing? Well, as it turns out, quite a few people!

I recently finished the Clean 9 – a nine-day cleanse based on drinking lots of Aloe vera in order to clear your body of all the nasty toxins, and kick-start healthy eating habits. It’s full of vitamins and minerals and balances your immune system.Β  It’s the perfect post-christmas detox and I’ve done it a few times with huge success.

I won’t lie, the aloe can be hard to swallow – it doesn’t taste the nicest! But the benefits are just so so worth it. Over the course of days 1 and 2 you’ll have lots of it (around 8 shots a day) morning, lunch, early evening and before you go to bed.Β  And then from days 3 to 9 it’s just two shots a day, first thing in the morning.Β  Paired with nine days of clean eating, shakes, regular exercise and cutting out alcohol or caffeine, et voila – you have your cleanse.

Aloe’s known for it’s internal healing, cleansing and nutritional repair – so seeing as I have an Auto-immune disease, what harm could it do! Here’s what I managed to accomplish in nine days:
1 stone weight loss and a total of 26cm (from various body parts of course) βœ…
My hair is shiny and really starting to grow (and that’s not the hair extensions!) βœ…
My nails always chip and break – apparently that’s down to the Psoaritic Arthitis that’s in my fingers – but my nails have grown so much in the last week.Β  βœ…
I’ve had a few outbreaks on my face over the last week, but that’s just the toxins leaving your body. My skin is now clear and glowing Β  βœ…
I have been waking up with lots more energy in the morning, and I’m also finding I get a lot more tired in the evenings towards bedtime (I think that’s the lack of caffeine interferring with my bodyclock) so I’m sleeping like a baby βœ…
Despite these rediculously cold temperatures, I’m actually getting less and less joint pain which is SUCH a good feeling and a release from the constant pain βœ…

THE BEST BIT…

I think it was day 7 of the cleanse, and for the first time in over a year and a half – I woke up with ZERO pain!! I couldn’t believe it, I almost cried! That nagging morning stiffness and having to get up half an hour earlier than I needed to, just so I could take my painkillers so that I could leave the house in as little pain as possible – it had vanished!
Don’t get me wrong I still get it now on and off, but I’ve never noticed as much progress as I have these past few days.
As a result, and after being on my meds for over 18 months I’ve:
Halved my codeine dosage (I’ve genuinely forgotten to take it a couple of times!) βœ…
Stopped taking Naproxen completely βœ…

Just the other day I was clearing out some of my stuff (a typical January new-year-new-organised-you situation!) and I came across a notebook which I’d used to write down all of my medication and what I had to take each day. It was getting to the point where I would lose track of what I had to take and when, let alone keep up with all the doctors, specialists, physio and rehab appointments. I’ve been on all of these meds for over a year now – and it doesn’t even include the Humira injections which I started back in September.

IMG_1600

Luckily, at the moment, I don’t recognise this and I’m glad to just be focussing on taking the Humira and the Methotrexate.

I’m planning on carrying on taking the Aloe Vera each morning and the clean eating lifestlye for as long as possible.

I must say, actually, I wasn’t doing it on my own this time around – I managed to persuade Wayne to do it with me too :-). He did struggle a little bit, but all in all had a great experience and it was fab to do it together. It made evening meals a lot easier too! Wayne also lost around 10lbs and is sleeping better with more energy.

—————————————–

My mentor throughout the cleanse, Rebecca, has been brilliant. When you sign up to take part, you’re also signing up to join online support groups with thousands of other people reaping the benefits too. It makes a world of difference knowing that you’re not on your own.Β You can get in touch with her on Facebook for info and support – give her a message here.

I am in love with the aloe so much that I’m now getting involved with Forever Living. So if you’d like more information on the Clean 9 or even just the aloe gel – take a look at myΒ Forever Living siteΒ or get in touch with any questions.

aloe gel

This time last year I…

This time last year I was in agony 24/7 πŸ˜”.

This time last year I couldn’t walk without limping 😩.

This time last year I had no idea what was bringing me so much pain 🧐.

This time last year I was seeing countless doctors, specialists, physio’s and pain specialists πŸ‘¨πŸ»β€βš•οΈπŸ‘¨πŸ»β€βš•οΈπŸ‘¨πŸ»β€βš•οΈπŸ‘¨πŸ»β€βš•οΈπŸ‘¨πŸ»β€βš•οΈ.

This time last year I had never injected myself before πŸ’‰.

This time last year I was taking over 20 tablets a day πŸ’ŠπŸ’ŠπŸ’Š.

This time last year I fell asleep in a 3hr MRI scan (that music gets me every time) 🀣.

This time last year I lived with my best friends in West London 🏠.

This time last year I’d never even visited Crystal Palace πŸ™.

This time last year I’d never lived with a boyfriend before πŸ‘«.

This time last year I didn’t have my own blog! πŸ“

A lot can change in a year and despite having quite a time of it with my health this year, I’m not one to let that ruin my spirit. I’ve been incredibly lucky and feeling very excited for what 2018 might bring πŸ‘ŠπŸΌ.

I hope everyone has had a lovely Christmas and I wish you all a fantastic, healthy and happy 2018… β™₯️

Joey

x x x