17.6.17




Hello my lovely people. We have no Stacie on the Road for you at the moment but we are working very hard on that particular part of my life but for the moment I am kind of in stay well mode. Unfortunately it would seem that my phlegm has decided to make some changes which suggest infection which has meant I'm back on my old Azithromycin drug which I despise beyond words. I had secretly hoped my body would do some sort of miracle memory thing and remember that it's had this drug before and therefore doesn't need to react so awfully initially but noooooo it seems so much worse. In reality it's probably the same just because I've had a nice break from it, it seems much worse, so I'm back to my mornings of curling up into a ball trying not to throw up or perform "other" bodily functions that the drugs seems determined to do. It's a whole to do and it's probably equally as horrid for the people around me because there is absolutely nothing that any of them can do except watch me go through it until it passes which must be terrible, I know I would certainly hate it. We have a mini plan though, Azithromycin everyday till Monday, take samples of the phlegm until then, ring Papworth Monday and see where we are and probably go in earlier than planned which is A-Okay with me because I'm feeling pretty not terrible per se but I certainly don't feel well or right in myself and nowadays we have to be even more careful because we have no wiggle room really in regards to damage on my lungs.
 
I find it hard to write my blog these days I don't know why. I never want to appear down to you and I don't want to scare transplant patients that may possibly find themselves in the same position as me someday because I know a lot that definitely will and potentially will, but then again I don't want you guys thinking that being told you're going to die is all hunky dory going here there and wherever else because it is definitely not. So it's sometimes just easier for me not to write anything if that makes sense. I think about death a lot nowadays and I don't really ever know how to put those thoughts down into writing because it's not like my old contemplating where it 'may' happen but I still have the very real potential to live. When I contemplate death now it's questioning what is actually going to happen for real it's really quite difficult to get your head around and there IS a difference between the two I didn't think there would be but there is. I feel a lot of guilt towards my boyfriend and my parents like I've never felt before because I can see the affect it's having on them as well and they are actually getting physically ill from looking after me! My mum has her stress induced blood poisoning back which affects her bones and joints and her lungs and eyesight and my boyfriend is doing a 93 mile walk to try and raise money for a wheelchair for me that is exhausting him when he already has a condition that limits the amount of energy he has on a normal every day basis. I feel like I'm actually killing the people around me and yet they continue to care and look after me! What can I do? Its a hulla ballo and I just don't know how to express it all sometimes.
 
I know I wanted to express my excitement about my newly installed chairs though! I have had 3 chairs delivered to my house which are to help me and more specifically my perching chair for the bathroom sink is my favourite so far. Strangely I find brushing my teeth really difficult standing there and doing that job is one of the ones I dread in the morning and the end of the day, so, so much and just having this chair helps me so much because I can just chill out on the chair without worrying about having to stand for at least two minutes doing this never ending laborious job. We're still working with the shower chair and trying to figure out the best way to deal with it and the whole shower situation but the fact we can pleases me immensely. The most recent addition is a bath seat lift and I'm so excited to use that for the first time and see if it helps because it's the lifting myself out of the bath that I find hard so we will have to wait and see :-D
 
I've been missing normal things lately, stupid things like getting changed properly by myself, making a bed, hoovering, other things that I could just do and not think about it if that makes sense? Like Megan has been having to help me with my scrap book which has been fun but it's sad I can't do it by myself, I want a proper not anxious filled bath! Looking around a shop without going where someone else wants to go, just those type of things. It's all silly really but I definitely think even with all of this I'm making the very most out of everything and everything still seems fun and life still feels so worthwhile especially now me and Mark are attempting to raise money for a "off road" wheelchair, it's all been rather exciting, it means me and Mark can make the most of our trips and actually not be stifled by a different terrains and even plan a forestry trip or beachey trip or just not have to think about a cobbled street. The most exciting part though is that once I've made use of it and hopefully made the most of my life it will get passed on into the transplant community for them to use and hopefully help people like me make the most of their time as well and that makes me so excited that I'll have some sort of something to leave :-)   

I'll try not leave the chatty blogs so long next time but I imagine they'll be several soon whilst all this fundraising is going on :-)

As always, thank-you for reading and chat soon
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13.6.17

Quest for freedom...


Although I have been ill my entire life I've never considered myself "disabled" in ALL of that time, I've been very ill, yes, but not disabled. I never knew what people who had to use wheelchairs had to go through just in an everyday life kind of situation; getting out of the house for instance that can be a hassle in itself I certainly can't do it by myself. It wasn't until we started to do more after being told I couldn't have the transplant anymore that I realised how truly limited people with access needs can be.

Before I got ill again Mark and I used to go on a lot of kind of country, lake walks or we'd drive to the coast and do a really nice beach walk and we were really starting to get into them especially with the transplant games coming up. The walks slowed down the more ill I got and eventually just became something I couldn't do anymore. We focused heavily on getting me better a wheelchair became a necessity for just getting around on a normal everyday basis so we brought a nice one, light, easy to get in the car, really comfy and easy for Mark to push. We thought we chose well and we definitely did for everyday use, for shopping going to friends houses, going to the pub those types of things.

I became more stable and we became a bit more confident in getting out and about and going further a field this is when we realised that as great as my wheelchair is it just isn't adequate enough for the things we want to do. If we want to do forestry walks, visit old towns with cobbled streets actually go on a beach. Mark met someone with a "off road" wheelchair and he thought how cool that would be if we could get one as that would help make unpredictable trips so much easier as we wouldn't have to worry about rough terrain and if we wanted to do a cute country holiday, we could! We would be able to do so much more without the worry of getting around and really enjoy things we were able to do before.

We found a company that made these wheelchairs and they very kindly let me try one out and me and Mark fell in love with it, I could barely feel any bumps under me and we were going over gravelly, muddy, stoney terrain and Mark said how it was so much easy to push because of technical things like suspension and stuff. It was so much fun and I didn't feel like I got jiggled around and I wasn't exhausted by the end of the ride. So now we're trying to raise enough money so that we can buy one and carry on our adventures, it's very exciting.

If we can do it, it means once I've "used" it Mark can kind of donate it back to the transplant community and let whoever needs it have a go with it if they need it for a holiday or they're doing forest walks and stuff, it's something I can give back to the community when I'm gone and that really makes me happy. It scares me a bit though, I've never raised money for anything and I hate having to ask for help especially when it is money related I don't like people to feel obliged give money but at the same I'd love it if they could. I guess what I feel like is a teenager who has thrown a party and invited all these people and I'm super worried no-one will actually turn up and I'll look like a lemon. I'm not sure what that says about me but I like to avoid humiliation where I can.

I wish things like these weren't so expensive and just readily available for those who would like to explore and do more, I think being able to get out and about more especially when you're in a very undesirable situation helps those people so much. Just to be able to experience something a bit different one day feel like you've done something a bit normal without being utterly restricted can do so much good for someone mentally. I know if I get out I always feel a bit better, it won't cure me of course but just the feeling is worth it and if we can make that easier for us then we have to try :-)

If you want to check it all out and see what we're doing and what it's all about head to Marks website called "For My Donor" where you can get sponsorship forms and have a read about his past experiences and past projects or you can head straight to our Crowdfunding page aptly named "Life is Worth the Fight" and have a look, spread the word or donate as little or as much as you like :-)

As always, thank-you for reading and chat soon
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