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!!
 :)