My Time in Hospital (Day 2)

Continuing on from my last blog post takes us to Saturday 8th July. I weirdly woke up at like 5.30am and was content with that (that's how you know things aren't right, I'd normally be sleeping until the afternoon!) I didn't feel too in pain (thanks to all the meds) but I felt really sick, but I wasn't sick - which was actually super annoying because I'd rather just BE sick than feel it all day. So I spent the day clutching a sick bowl, just for in case.

I had breakfast, and then one of the ward staff came to help me have a wash, and I finally changed into my own nightie rather than the hospital gown. I got visited by physio, and they took me to have a go at walking on my crutches, and to have a go going up/down stairs as I'd told them I would have to when I got home. It all went well, but got cut short a little bit by me feeling quite unwell, so I went back to bed as my head went all fuzzy. But they gave me a zimmer frame with elbow rests to use, as it was similar to my crutches and would make life a bit easier. They also got me a proper leg rest, as my foot had been resting quite low down since the surgery.

Then I got a visit from Occupational Therapy (my OT had e-mailed ahead about me, to make sure I got good care, bless her!) just to check I had everything I needed to have some life when I returned home, and everything was fine there too, as my OT had been super prepared in getting me all the bits I need. 

Asides from that, and spending the day feeling sick, the only other eventful thing that happened was when it came to dinner time, and I'd accidentally ordered a bizarre dinner, as I didn't know how the menus worked!! There was like, a list split up with bold lines, and I thought I had to tick one per section... So I was set to be having like 3 different meal choices in one... But thankfully the lady bringing the food round let me know that it seemed a bit odd, and she let me re-adjust my menu when she'd let me know how it works... Silly me! Guess that's what happens when you give someone whose had anaesthetic a task to do! 

Simon visited me, and we played games and chilled out for a bit. But in the evening I started to get a weird pain in my heel, that wouldn't go even if I took pain relief. No one seemed to know what it was, and one of the ward staff got a doctor to come and see me to see if he could help and he said they would see how it was in the morning to see what they would do with it.... It was pretty agonising by this point, but I tried to just grin an bare it and get some sleep. 

And that was my Saturday, I was just grateful to not be sick (despite hating the fact that I felt sick) and felt pretty good everything else wise for the day. I ate all my meals (they were yummy!) But unfortunately ended the day on a bit of a downer. 

Tune in next time to hear about Sunday! 
TTFN, ta ta for now!

Surgery and my time in hospital!

On Fri 7th July I arrived, bright and early at the hospital, at 7.15am. Ready for an hour and a half of questioning about my health, some explanation of what was going to happen in the next few hours and some last minute tests (swabs & urine tests), before getting some numbing cream put on the backs of my hands (as I requested) and changing into my oh-so-flattering hospital gown.

I went into theatre at about 9am, where a few of my questions were checked over again before the anaesthetist got ready to put me under general anaesthetic - I think I got sedated first, as I was a little bit nervous about them putting it in the back of my hand. (I don't know what it is, just needles in the backs of my hands freak me out a bit - hence the numbing!) All I recall from before going under was babbling to the doctor who was sticking ECG recorders on me... Something along the lines of "I bet you get people saying some funny things to you when they're on this..." Then I proceeded to tell her about a video I'd seen on Facebook of people who were coming off anaesthetic... But I don't recall the whole thing, so I was no doubt one of those people... My bad!

My view when I woke up

I then woke up in the recovery room, which I don't remember much about, except for someone giving me tea through a straw, then my oxygen mask, then the tea again - oxygen mask - tea... You get the gist, he was just making sure my heart rate was good, and I just wanted tea... My priorities were in the right place! Then I got wheeled up to my ward (it was about 1.30pm?) where I sort of phased in and out of sleep for a couple hours, until I finally came around enough to ask where my bag of stuff was, so I could call Simon and let him know he could come back to the hospital to see me. I woke up with my foot already casted up, it was in a backslab that was just bandaged to me, so there was support where it was needed. I had a pump on my right leg, to help prevent blood clotting, and obviously a cannula in my hand.

Asides from that, Friday was a bit of a blur, I know that Simon visited, left and then came back later with his Mum and brother, and that I'd also spoke on the phone to my Mum and sister... I know I got given food and drinks, but I didn't eat very much as I felt really sick, and was sick a total of 4 times that day. So that meant I had the joy of being given everything through my drip, which was fine at first, but then for some reason I just couldn't keep my wrist in the right position for the drip to keep dripping, and my hand swelled a bit which was a bit uncomfortable. I was obviously also in quite a bit of pain, but not unbearably as they were keeping me thoroughly drugged up (thankfully!) I then also had to deal with using the toilet... We attempted a bed pan twice, which just wasn't happening, and then I got to try the commode, which thankfully was fine, as I was starting to worry. But then my body decided, "hey, you know it's really awkward for you to wee?? Ha! Well now I want to wee on an hourly basis throughout the night"... So my poor ward staff had to deal with me buzzing every hour for the next, like, 4 hours throughout the night so that I could use the commode/the bedpan (which I finally used and HATED - kind of feels like you're weeing yourself and I'm not down with that!)

And that was my first day/night in hospital, thrilling stuff, huh? Apologies that it's taken me nearly 2 months to write about it, I'm just pretty terrible at motivating myself, but I will be sure to continue telling you about my adventures since surgery!

Until then,
TTFN, ta ta for now!
 

Let the Countdown Begin!

Hello folks! Sorry it's been so long, I lost my blogging head somewhere, but now I'm screwing it back on!

Nice pic of my feet for you!

So, we're officially 5 weeks and 1 day away until my planned surgery day!! (July 7th!) I'm a mixture of excited and nervous. I'm excited for the prospect of my foot being straight and being able to walk properly on it... But nervous about the whole... Surgery, potential infections, 6 weeks of being a cast... That stuff. But I'm trying to keep excited about it and not worry too much about it yet, as we're still a few weeks away. 

Basically, as you can see in this picture, my foot doesn't point the right way anymore, and it's impossible for me to move it, so walking on it is gradually destroying my ankle/ everything around my ankle joint, and it really hurts to walk on... So my lovely surgeon is going to clean up the inside of the joint and put a rod and some nails in there to fuse my ankle joint and my subtalar joint, so I won't be able to move it anymore, but it won't be stuck in a silly position, so it won't hurt any more (fingers crossed - assuming everything goes well!) 

Then I've got a wonderful long recovery to look forward to with approx. 6 weeks in a full cast (non weight-bearing) and approx. 6 more weeks in a 'moon boot' (weight-bearing) and then AT LEAST 3 months until a full recovery, walking etc. BUT, what that does mean (as I counted in my diary) is that I could potentially be walking properly before we hit 2018! Which is crazy, but it'd be awesome if that is the case! 

I'm seeing the anaesthetist on the 13th June to check everything's going to be okay for my general anaesthetic, so I'm readying myself to be prodded and poked. Hopefully that all goes well and then we've just got to prepare for the surgery!!! So, if anyone has any tips/advice, feel free to comment and share them with me! We've got some things planned/getting sorted to make life easier, but I am not looking forward to being stuck in a cast for 6 weeks!!

My first items on Etsy!

So that's all of that, now I know I promised I'd write shorter blogs from now on - I lied! Mwahaha! I will try to from now on though... But while we're here I thought I'd let you know I decided to start my own little business venture! I've opened up an Etsy store - which only has 3 necklaces in so far, but I will be improving/expanding it shortly! I plan on this being something I can do while I'm stuck in a cast, as I can pretty much cross stitch anywhere! Woo! Go visit me at: https://www.etsy.com/uk/shop/GeronimoCraftsUK and like I say, there'll be more soon... I'm getting there! (did I plug that subtly enough?)

Right! I'm going to go, and I promise to try and follow up on my word of blogging more, and shorter blogs....

TTFN, ta ta for now!

Reading Back...

So, I decided to re-read my whole blog - everything I've ever written, from April 2014 to now... Wow, I never realised how much I'd actually wrote, and some of the things I've said. It took me over an hour, but it was a nice reminder of how things have been and how much has happened.

I realised I'm pretty good at saying things and contradicting myself a little bit, so I decided I'd do a little update on things I've said and things as they are now.

Find more of my crafts at:
https://www.facebook.com/GeronimoCrafts/

Firstly, 'Forever' - the business venture I took on for a whole 5 minutes. Haha! I said I would Blog about it at some point, and I never did, because I gave it up pretty fast... Turns out I'm not very good at motivating myself to do something I'm not really invested in. Which is a shame, but it was a lesson learnt. I am however attempting a new business venture (no promises yet though!) of being a crafter and selling the things I make - a much more doable business venture as it's actually something I enjoy!

Secondly, my sudden switch between "I'm going to do this all naturally from now on!"  to "GIVE ME ALL THE NHS PRESCRIPTIONS NOWWWWW!" - a few months ago I was preaching about how amazing it is to do everything naturally and using no nasty chemicals... Well, that was another lesson learnt, I went back to using medication because I realised that my Arthritis is never going to be cured naturally. It's about discovering the balance - yes nature can help, eating healthily and excersising is obviously very much suggested, but if diseases could be cured naturally, we'd all be walking around fit as fiddles. Don't get me wrong - if Aloe Vera and other natural things are what do it for you, then good for you - you do you! But the whole 'nature' thing didn't really do it for me, and it's probably a good thing I didn't stick to it seeing as I have an ankle which is fused in the wrong position - which would only have got far worse without medical intervention. So, big up the NHS! I'm sorry for briefly not loving you. (Although I still don't like medication and dream of not having to have it!)

Lastly, (I'm not sure if I forgot any, but I'm sure I'll blog about it if I did! - or you can just comment it mentioning it if I did miss anything that I've never cleared up!) I'm going to try and go back to my original state of blogging, where I wrote shorter blogs, more often. As I realised that my more recent posts are SOOO LONG, and I applaud you for bothering to read them fully (if you did!) But I personally found it more enjoyable reading my short, regular blogs than my essay long blogs... So look out for them! 

By the way, if you do regularly read these, or just fancy keeping in the know, you can actually subscribe to the blog, somewhere at the bottom of this page, I think.... Or you can follow by e-mail by putting your e-mail in at the side >>>>>>>
I don't know, I've been doing this for nearly 3 years now and I still have no idea what's going on with all this stuff at the side of the page, I'll have to have a gander!

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

I'm Having a Good Day...

Hey there! I hope you're well! Like I said in the title, I'm writing this because I'm having a good day. (Well, as good as a day with a blood test in it can be!)

I've been meaning to post a blog update for a little while because everything's been happening lately! But the side effects of all my medication have been a little poo, and I didn't want to write a moody blog, so I thought I'd wait! But it's finally time, and I'm going to format it like I did last time I think, because it made it a bit easier to read (in my opinion - but let me know if you disagree!)

Image from www.arthritisresearchuk.org

So, firstly... I've finally seen an Orthapedic about my silly immovable ankle and he's going to refer me to someone in Grantham hospital about doing an ankle athrodesis (a.k.a. ankle fusion) on me. Here's a picture of what an ankle fusion looks like... Basically they clean up the inside of your ankle joint and use screws to put it in a good position, that should no longer cause any pain... But you sacrifice most of your ankle joint movement... I don't have much of that anyway so that's all good with me. My ankle has actually already fused itself essentially - but because it's done it in a way that was "comfortable" for me it's not at a very good angle and makes it difficult for me to walk. Basically it'd be good because it'd hopefully get me walking without aid again (and my gosh, I would love that!) Walking with crutches is so darn tiring!

And on that note, I started Physio last week for my ankle and knee! I got set some exercises to strengthen my knees/hips so they're a bit more ready for if I have the surgery. I also got a pair of gutter crutches to test out as I was struggling with normal crutches due to my left elbow not straightening. They basically give you a bit to rest your whole forearm on, and straps it down with a handle at the end, so the pressure is more on your upper arms/shoulders instead of your elbows. So far they've been great! I can walk a lot further with them without having to stop for breaks as they're causing less pain, so it's less exhausting. They are a bit heavier than normal crutches though, and I can feel it in my upper arm muscles today! With a bit more practice I should be fine though!

I started back on Methotrexate a few weeks ago, so now I'm on.... Humira, Methotrexate, Prednisolone (steroids) and Folic Acid for the Arthritis, and the pill (because you have to be on some sort of contraceptive while on Methotrexate) and Cetirizine because I appear to be allergic to the red ink in my tattoo...All the pills! (It could be worse) But I'm getting plenty of horrible side effects - I've started making a list in my diary ready for when I see my nurse next. I had my first Migraine.... OUCH! I apologise if I've ever called your migraine a headache.... They're so painful! I've had headaches too, swollen/heavy eye lids, heartburn, and a whole lot of nausea. Booooooooo!! But I'm getting on with it like a good girl so I don't get told off by any rheumatolagists! 

Just so you all know, I've recently started blogging for Arthur's Place - a magazine and social network for young people with Arthritis. You can find my blog at: http://arthursplace.co.uk/the-life-of-a-spoonie/ but I would definitely suggest you give the other blogs a read too! And if you suffer with arthritis yourself join the group on Facebook - Arthur's Place Social, it's honestly been so useful to me and to many others to have someone to talk to whose in the same boat.


And that's all from me this blog I suppose... Oh yeah! Except news for anyone who doesn't already know - Simon and I got engaged! Which is all exciting and awesome! So my new aim is to get myself walking unaided ready for me to walk down the aisle! So it's all happy days for me! I'll be back again soon, but in the meantime, don't forget to check out my blog on Arthur's Place! (I manage to blog a little more often there as someone prods me to get it done! Haha!) But maybe that'll spread and I'll manage to blog here more often, who knows? 

Right, TTFN, Ta ta for now! :)
 

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!!
 :)