I Didn't Choose The Spoon Life. The Spoon Life Chose Me.

A very belated Happy New Year to you all from a newly turned 22 year old me! (It was my birthday on Tuesday!)

And, once again, it's all been happening for me recently! Firstly, I moved into a house with Simon (the boyfriend, in case you didn't know) just before New Year, I finally had an appointment with an Occupational Therapist, I'm booked in to see an Orthapedic and I finally started my Humira injections on Monday!!

So, I'll take it bit by bit. First, HOUSE! It's great to have a house at last which I can call my own and to be able to share it with Simon - who, I am incredibly lucky to have, as he has been looking after me so much lately. I've been job searching lately, so I can have something to do and help pay bills etc. and so far it's been.... Dissapointing. It's so hard to look for jobs knowing you're limited physically. If only job descriptions could include "yes, you can sit for a whole shift", it would make life easier! But I have been applying for anything which I think would be suitable, like reception jobs etc. I just haven't got any where yet, it's pretty disheartening, but I'll keep trying!

My little perching stool!

Next, OCCUPATIONAL THERAPY! - I finally had an Occupational Therapy appointment last week and it was great! I honestly don't understand why it's taken 8 years to see one, because I could really have done with it a very long time ago! She was super helpful and ordered me a perching stool for my kitchen so I can sit and do the washing up/ cooking/ waiting for the kettle to boil etc. and I received it the other day (pictured to the right) and it's not the most attractive looking of stools, but it does the job! It felt pretty awesome to be able to sit and do the pots (as sad as that sounds) but normally it kills my legs, which ain't great. She also ordered me my own wheelchair because I've been borrowing one from a church where I no longer live, so it'd be good to give it back... And she also told me about Smart Crutches - which are like fancy Gutter Crutches because she thinks they'd help me as my elbows are also bad, so normal crutches don't help... I'm going to give Gutter Crutches a go first when I go to physio, and if they're not great I'll consider buying myself some Smart Crutches, because they're £85!!!! And that's not money I have to throw around right now. And, basically I'm back to see her again next month so she can see how I'm doing and suggest some other things to help me get on with life :)

Humira injection!

And finally, HUMIRA! (Or Adalimumab!) I finally had my first dose of it on Monday! I say finally because when I was 16 my doctor at the time tried to apply for funding for me to have this medication and got declined at least 3 times because simply having one severely bad ankle was not enough for them to give me it (PFFT!) Which was pretty annoying. But hey ho! I have it now, and that's what matters. So, after having Methotrexate injections, I was pretty scared that these were going to be awful too, BUT it wasn't!! The needle is so much finer, I barely felt it! And you don't have to press it ridiculously hard into your leg to try and get a safety barrier up properly, so it's fantastic! I felt well afterwards, and the next day I was okay too, except for a really itchy nose/feeling like I needed to sneeze.... But, from Wednesday onwards that turned into a lovely cold, so now I'm snuffling away, surrounded by hankies and cups of tea, wishing it would hurry up and pass. But I can't complain, I'd much rather get a cold than feel sick... Fingers crossed my body will get a little more used to it and react a little better in future. But I have until the 6th Feb to recover because the injection is bi-weekly, which is also great, the only downfall is you have to be in very good health to do it because if you do it while ill, you can get really quite ill, and we don't want that!

Things are finally beginning to happen, and I love it - it gives me hope that I will overcome this and be walking about and doing things normally in time or at least finding better ways to adapt to the life I've been handed - hope which I've really lacked over the last few years and it's nice to have it back again. I'm set to start physio again soon, and see a Orthapedic about whether anything can be done for my ankle/elbow, and I'm starting back on Methotrexate again soon too - so I'll be sure to update again soon!

So, from this girl who ain't giving in....
TTFN, Ta ta for now! :)  

The Rollercoaster Known As 'Life'

Hello! I'm back again! I hope you're all doing well :)

So, it's all been happening in the past month! I've just got back from having a lovely bloodtest (2 forms instead of 1!) and a chest x-ray, just to doubly make sure I've never had tuberculosis or hepatitis. Which, as far as I know - I never have, so that should be fine, but I had to have them so that the hospital can be all fine and happy to prescribe me... Drum roll please.... ADALIMUMAB! (try pronouncing that when you're drunk) Otherwise known as Humira. This is another injection, but it's every 2 weeks as opposed to weekly (phew! I suppose) I've literally been waiting to have this medication for years! When I was about 16 (so 5 years ago) my doctor tried applying for the funding to get me it a few times but was declined every time, but it turns out Lincoln are lucky enough to be able to just give it out when they want to. So I've just got to wait for my results and then get on that, I'm sort of excited, but sort of nervous at the same time.

The downside to Adalimumab (asides from it being an injection) is that it's also recommended that I get back on Methotrexate again (boooooooooo!!!) I'm obviously quite reluctant, but I've said I'll give it a go! 

Day before hospital appointment and 2 weeks after

 

I've also been taking Prednisolone (steroids) tablets for the past month, and as you can see from my picture of my bad ankle, my swelling has gone down so much it's crazy! Like, my foot on the right side of the picture nearly looks like a normal human foot! This doesn't mean my ankle's better though, it still swells up occasionally, and I can't really move it at all. And due to losing the swelling it's a lot more vulnerable and gets cold really easy now which hurts a great deal, but it's a step in the right direction! :)

Asides from all this hospital-y stuff, I've been trying to keep myself busy with not working and all. I've been working towards walking again and I've managed to get myself down to one crutch most of the time, two crutches when I'm in a great deal of pain, and wheelchair when we go shopping or something. Hopefully in time I'll build up my strength again to be able to just use a walking stick, and then work my way up to walking longer distances, as I use the chair at the minute as I'm just exhausted after quite short amounts of walking. I have hope! :)

You can find my page at:
www.facebook.com/GeronimoCrafts

I recently auditioned and got the job with the Lincolnshire Road Safety Partnership, performing in their corporate tour which we will start rehearsing for in the New Year, which I'm excited for, and it's adding motivation to get me better and walking again! And I've been doing some crafting! I've been making Christmas presents for all my family, but I hope in time to be making some stuff to sell, so I set up a Facebook page for it (feel free to give it a like!) It's been nice to do something which is rewarding but not physically demanding, it feels so good when you finish something and it looks fabulous! 

Give us a listen at Siren 107.3FM or online at www.sirenonline.co.uk

 And last but not of course not least, I've recently started co-hosting and co-producing a little radio show with Simon called Take the Stage, which we do every Sunday 2-3pm (feel free to tune in!) It's good fun, we play lots of great show and film music and generally have a chatter about local theatre and films on at the minute.

So, as you can see I've been trying uber hard to keep busy haha! But hopefully Simon and I will shortly be moving out together and hopefully I can get back into work again, so overall, feeling pretty optimistic at the minute! Woohoo!

Anyway, thanks for reading, well done if you made it this far - I realised I've babbled on quite a bit! Next update will be soon I'm sure!

TTFN, Ta ta for now!!
 :)

The Downfall

Hi guys,

This post is a little bit of a downer compared to my last one a few months ago, as I had just started my new job then, and now I'm set to be leaving it in just over a week. 

I've had a little bit of a roller-coaster ride since starting here, with struggling when I initially started, but then having a hospital appointment not long after my last blog post (when I decided enough was enough and I needed help from a doctor again) where I received a steroid injection and discussed the potential of starting a new weekly/biweekly injection or monthly infusion - this will be decided upon on my next appointment. Anyway, I returned to work again after the appointment, and found myself coping much better, and managing shifts with a lot less pain (although I was still in pain, just less) thanks to the steroid injection I had. But... Unfortunately that wore off after 6 weeks (when I was due to go back for another appointment, but had to rearrange, little did I know it'd be a whole month later!) So, at the moment I'm back to square one, suffering so badly I've had to leave my job (well, in a week)...

It's a real downer really, as I was enjoying the job, I love hosting and my fellow team members are great. But I'm often finding myself unable to finish my shift, and having to leave early, and then arriving home unable to walk any more. Genuinely, there have been nights where I've got home from work, crying from the pain and the misery it causes me and I've not eaten anything because I can't deal with the pain of standing up & walking... And the pain has made me lose sleep often, and I know it's not a healthy way to live at all, in fact it has made me feel quite poorly on a regular basis.

I find the whole thing incredibly degrading, I've honestly never felt so worthless. The fact that I can't even look after myself in a tiny accommodation which has no stairs, and everything is only a few steps away at the age of 21 kills me a little bit. It's just totally ruined me basically, we all know I hate giving up on things, and I often like to define myself as a "trooper" for all the stuff I've managed to do by not giving up. 

But unfortunately this time I have to give up, and I'll be moving in with Simon and his family, and see where I can go from there... Fingers crossed I'll be up and running again shortly, I'll be sure to blog about it when I am, but in the meantime, it'll be time to rest and prepare myself for my next hospital appointment - which will probably include being prescribed a new injection :(

TTFN,
Ta ta for now.

My Update On Life!

Hellooooo!!! 

It's been a while, again! (Sorry, I have no consistency, my baddd!) I've actually been quite a busy bee over the last month, with moving to Butlins and starting my job here. But I've been here for over a month now, so I figured it was about time that I blogged again. Well, I suppose if you're reading this, you'll be glad to know I'm having a fantastic time so far, I've met loads of amazing new friends (who, I don't have any photos with, so there's actually no proof... Note to self: Take more photos with friends!) who've made settling in here easy, and have also made me super happy, naturally! 

Team!

I've been enjoying my job immensely too, I've been designated as 'host' which means I get to greet all the guests at the door, take them to their tables and wave them goodbye as they leave. It's lovely because I get to meet and chat with so many different, lovely people who all have interesting stories to tell. Initially, I didn't enjoy hosting very much, but with the help of my fellow team, it's become a role that I love :) But, although there is so much positive stuff, obviously, there's my arthritis to ruin things. Well, I say ruin things, it doesn't ruin anything as such, but it is a constant struggle, and I will often find myself terribly limping home after a day of work. It's a pain in the butt to put it frankly, but it's not been anywhere near as bad as I expected.

I've tried a few new things since starting work here, well, to be precise: Copper insoles, glucosamine tablets and "paingone pen". For the insoles, and the tablets, I'm not really sure if they're helping or not, it's a struggle to tell when you're constantly active. As for the paingone pen I've not used it much yet (for those wondering, the 'paingone pen' is a thing that looks like a pen, that you click against where is hurting 30 times and it sends tiny electric shocks to it, to make it not hurt). The reason I've not used it much, is because I'm not generally sure when to use it or where... I've tried it on my ankle with little success, but to be fair, if there was anything out there that could take away the pain from my ankle, I'd be amazed and love it forever. But, obviously I'm going to persist with all of these things (including Flexiseq, which I'm still on with), it's nice to try some things which are different (and not NHS prescribed!) 

On the note of NHS prescriptions, I generally feel a hell of a lot better generally since quitting my methotrexate and folic acid, obviously not arthritis wise (although, I wouldn't say I feel any different arthritis wise) but like, general wellbeing wise, I obviously feel less ill, and just generally happier without it. As much as methotrexate was a Godsend during my younger years, it got to a point where I couldn't imagine putting myself through taking that medication for the rest of my life, like, I would genuinely rather suffer with my arthritis more for the rest of my life, than take that vile medication... (Although, if you take methotrexate, and it's good for you, and you're okay with it, you keep on it!) It's a good medication, but it was simply too rough for me, I couldn't deal with the days of sickness it would put me through, and the anxiety every week of knowing I had to inject it and then obviously... The blood tests. (My gosh, I am so grateful to not have those right now!).

So, all in all, I've had a pretty good month, I've learnt a lot about myself, and grown as a person (I think)... As cheesy as that sounds... But I'm honestly loving life here, and I'm sure it can only continue to get better. :)

Cheers for reading,
TTFN, ta ta for now :)

Trying Something New

Hello!!! I hope you're all doing well - I'm certainly doing far better than I was!

I recently got myself a job waitressing at Butlin's for the summer, which I start on Monday! (Exciting!) And I've also started a business venture of my own, becoming a Forever Business Owner - but I'll probably write a separate blog post about that at some point! :)

This blog post is actually about a product I'm currently using for my arthritis - Flexiseq. I've been using Flexiseq for the past couple of weeks on my knee and ankle, after I was contacted by the company to offer me a sample as they'd seen my blog! (woo!) I accepted a sample, although I was incredibly sceptical. "How is something you rub on your skin supposed to help your joint!?!" I would say. But I began using it on my ankle and knee twice a day as instructed regardless of what I believed.

Flexiseq is actually most commonly used for osteoarthritis (another thing to add to my scepticism). But two weeks later and I've just ordered my next tube off Amazon, because this stuff is great!!! It has helped significantly with my knee and ankle pain (but mostly my knee!) I've gone from needing to use my walking stick on a daily basis to only needing it every now and then when I've been on my feet for ages. I'm not saying this is a miracle cure, but has definitely given me great improvement, and I shall continue to use it, I would use it on more of my troublesome joints (such as my elbow) but unfortunately it's a bit expensive for me to do that at the minute. I think that's the main downfall of the product - that it's a bit expensive and you're required to use a lot, one tube has only lasted me two, nearly three weeks for an ankle and knee, and at the minute a tube of 50g on Amazon is £12.50 (which is a lot cheaper than it currently is in Boots etc!).

One massive positive of this gel (asides from the fact it's done good) is that it's drug free!! That's right, you read that correctly, drug free!!! Which I think is really amazing, because it means there's no nasty side effects, and won't interact with any medication you're on, which is brill! And it's also great because I hope some day to be completely drug free, (as I don't want all my medication doing nasty things to me in the long run!) So this gel is a step in the right direction, and I hope other companies will follow in its footsteps towards helping arthritis sufferers become drug free!

Ultimately, if you have arthritis, I'd suggest giving it a go! It might not work for you, but it also might really help you! You'll never know until you try, and if you look at reviews on the internet, you'll see there's a range of positive and negative reviews, because like everything, it'll work for some people, and it won't for others. That's life! As for me, it's helped me massively, and is one step closer to the drug free life I dream of!

Thanks for reading, and if you'd like any more information on Flexiseq, visit their website at: http://www.flexiseq.com/  

TTFN, ta ta for now!!! :)

Some Context...

Hello!! I hope you're all well, and that assessments are going well if you're doing them! (One more performance for me and then I'm done! Woohoo!) I also had my hair done again today! Back to red and I love it! :D

 I thought I'd write a blog, just to give a little context to my last post, as it was written quite in the moment and based on how I was feeling at the time. But since, I've managed to collect my thoughts and what not.

So, as much as it may not seem it - my diagnosis of depression & anxiety is really quite relevant to this blog. Something I never realised was how much methotrexate really effects EVERYTHING. If I'd have known it was going to have such a knock-on effect with life, I perhaps would never had started taking it, but I suppose as a child, the effects weren't quite relevant. Basically, due to my methotrexate there's a whole two medications my nurse is allowed to give me. One is old, and they don't really use it anymore, and the other is Mirtazapine, which I am currently on. 

At the minute it's not really working for me, although it did initially. So now I've joined the mental health waiting game to see a psychiatrist, which I have to wait 2 months for. And that's just so they can assess me to find out which medications they can give a try while taking methotrexate. So this is the second time methotrexate has ruined things (first time was inability to have Yellow Fever jab due to it, which means I'm no longer climbing Mt. Kenya this year :( ).    

You never really realise how one thing can effect another so much, especially when it's arthritis! All you think it does is make your joints hurt... But it's far more complex unfortunately.

As an update on the arthritis front, in my last appointment I got put on Hydroxychloroquine and was supposed to be referred to talk about surgery for my ankle, but I've heard nothing yet.. I think I've been forgotten :( ... What I found with Hydroxychloroquine was, while I was on it, I simply thought it didn't work, and my arthritis got a lot worse, so I assumed it was simply a flare up... But after stopping taking it, my arthritis suddenly went back to being better (but still bad - just as it was before)... So I assume from that, that hydroxychloroquine actually made my arthritis worse... Which is crazy! I never thought that would be the case, but heyho! 

Anyway! Cheers for reading, as per usual! :)

TTFN, Ta ta for now! 
x

A Bit of Honesty...

Hey, sorry for not blogging for a while, I'm in my final term of uni, and I've been quite busy recently, mostly with dissertation, but it's finally submitted!

My finally finished diss!

Alongside this, I've also struggled to find any inspiration to blog if I'm honest... So, this blog is about something I've kinda wanted to blog about for a while, but have been pretty scared to... So, about 5 months or so ago, after a few years of struggling, I finally sought help and got diagnosed with depression and anxiety. I have since been treat with Mirtazapine and a course of CBT, but am currently awaiting an appointment with a psychiatrist.

It's a topic I struggle to talk about, I'm not particularly good with feelings (mine or others) -hence why it took me so long to get help, but I know it is something that needs to be talked about... I suppose the reason I think this is because, even though there is no one set 'reason' for being diagnosed with depression, I definitely think my arthritis is one of them.

I've struggled with arthritis for 8 years now, and through that, I have noticed that, naturally, when my pain is bad, my mood is also bad, and lately my pain has been particularly bad, therefore taking my mood with it. Arthritis also gives me a pretty bad outlook on life, I believe that I'll never get a job and that I'll end up living off a disability allowance, I believe that when (if) I have kids I won't be able to play or look after them like I should, I believe that everyone who sees me limping is judging me, and that no one believes that I genuinely have arthritis, and that I'm just an 'attention seeker'. 

On top of these beliefs of what people think of me, it doesn't particularly help that I've always struggled to make/maintain friendships, and I pretty much believe that no one likes me. Which is a pretty petty thing to think, especially at the age of 21, but it's something I've believed all the way through school, college and university.

I don't really know where I'm going with this blog, I suppose I have a lot of stuff that I've wanted to get off my chest for a while. Really, I'd just suggest if you feel down, it's okay to seek help. I wish I'd done it earlier, and I wish my rheumatolagists had maybe even asked me about it, because it's definitely something they should consider, in any kind of chronic illness, that the effect it has on your life, could potentially make you feel this way. 

Basically, it's okay to not be okay, and you should seek help or talk to family/friends if you feel this way. We're all too quick to dismiss our mental health and are often happy to put it at risk for the sake of getting an assignment done on time, or making sure your house is tidy (I don't know, just examples!)

Sorry for the unhappy blog, maybe I'll be a bit cheerier next time.

Until then,
TTFN, ta ta for now x