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

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.Β  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) β€’ 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.Β  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

Heaven on 8,820 nails…

I am SO sick of being sick! I’ve had a chest infection for almost a month now, and am driving myself insane, let alone everyone else! Three GP opinions later I have finally been given some antibiotics to help get rid of it – we all know antibiotics aren’t the best answer, but with all of the methotrexate and the biologicals I’m on, my immune system is constantly being suppressed, so it’s time to give in and get a little extra help to boost my immune defence and finally get rid of this bloody infection.

I’ve had to stop taking my biologicals for the moment until I’m feeling back to normal, but I’m still – reluctantly – taking the methotrexate. It’s my chemo day today and am feeling especially sluggish.

The most annoying thing about being ill is that you have NO energy, so all I can do is try and rest. Which means being horizontal. Which is an absolute no no for my back when I’m having to lie around all day. This afternoon I could barely stand straight. so along with a little spinal stretch on my faithful foam roller, I had just the thing to help…

For anyone who’s ever had acupuncture and found that it made a difference, I am right there with you. It had so many benefits, it saved me from my horrendous insomnia some years back, along with soothing my aching muscles and easing my back pain somewhat. What it didn’t do, however, was save me money. God it’s expensive!!

Now THIS is a game changer:

If you haven’t heard of Bed of Nails… look them up. These guys have come up with an acupressure mat- it’s a foam mat with 8,820 little plastic spikes which you lie on and it gives you all kinds of benefits:

  1. Relieves chronic back and neck pain (they do a neck pillow version too and it’s fab)
  2. Reduces stress and anxiety
  3. Increases blood circulation
  4. Increases energy levels

http://bedofnails.org/

It’s not as painful as you might expect – once your body weight is even across it it’s absolutely fine, quite enjoyable even! It’s best to be wearing light thin clothing for this – I haven’t quite worked up to lying on it with bare skin yet – ouch!!

Because of my back, it’s a little too uncomfortable to lie flat on the floor for a long period of time, but it’s fab to put on the sofa and / or bed, and the neck pillow is perfect for this too.

You can also put the neck pillow in the arch of your back if you get sore when sitting up right – the neck pillow is probably my fave item.

With the mat you can even stand on it and do your feet. Pretty painful though to start with, I’m too much of a wimp to do that at the mo ☺️. One day!

They’re easy to travel around with as they come in these handy travel bags.

<<<<<<<<
t them online and in a variety of colours now. About half an hour in the evening on this and it's SOOOO good. I highly recommend!

I need to try more of their products – they do aromatherapy oils and candles too – my fave!!

Joey

xXx

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) πŸ˜‰ 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.Β  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.Β  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