30.6.17

Confessions...


Howdy people. I'm currently sat in bed watching 'Riverdale' on my iPad whilst getting over my morning pain/sickness fest. I can't quite describe to you what my mornings are like nowadays and whether people will really understand how difficult they can be for me and certainly difficult for those that have to deal with me as there really is nothing anyone can do to help me with it at all in the morning. It's a strange set of affairs because I wake up and feel pretty good;- chest feels pretty clear, breathing is even and level, I've got a generally happy demeanour going on. I tend to take pain meds immediately because if I don't this generally "good" feeling will only last so long and that is when we slowly progress through the morning with a routine of breakfast, tea, medications, nebuliser, inhaler, more meds, physio and so forth. Now since my last clinic they altered things round a little and it buggered up my body a little bit so at the moment I'm suffering with a lot of pain which during the morning will be building up and up and up whilst I have to do things. As I obviously have to use my lungs more this then just makes me the most tired person on the planet with an entire chest and torso screaming at me that they hate me, trust me I hate them just as much in those times. 

I do have to apologise though my being 'ill' doesn't really have too much to do with why I haven't blogged as much recently and it's certainly not through lack of content as in my mind I have SO much to write about and genuinely when I have a thought about something I'll alway be like "Oh, I should really blog about that..." then the thought or having to go upstairs to use my iMac hits and there is no way I'm going to move to sit at a uncomfortable desk and I'd rather not have to ask Mark to use his Macbook when I'm at his. It was a dilemma that I hadn't really noticed until I really wanted to get it sorted and organised again and get back into writing things down more extensively again and now that means I own a MacBook! I can easily blog when I'm in the mood now as i's more accessible I can do it in bed when I'm feeling crap and it just makes my life so much easier :-). I know I could use my Phone or an iPad but the way the formatting seems to work between devices is weird and changes and I have zero patience or tolerance for technology lol. 

I have been having a really awful few weeks, if you follow me on any of my stuff like, Instagram or Twitter or Facebook you'll be following the pretty happy version of me at the moment what I definitely haven't been putting on there is how exhausted I am, how much pain I'm in, my constant production of phlegm, my thinning hair, my stupidly round face, my red face, the fact my head could probably be used as a tap and my latest body hang-up apparently my new title can be "Stacie: The big flake of Skin" my skin is that dry all the time! It's amazing the side affects that drugs seem to produce in a person and the thing is half of the drugs are drugs combating the side affects of other drugs which in turn have side affects, so essentially most of the time you're having to choose which your lesser of evils is or you just have to put up with it.   

I'm really not complaining though because I'm still managing to do amazing things within my limited means and we're still planning things so I feel like life is good I just wish my mornings were't dragged down by being ill, I want to be able to hit the day running, figuratively anyway, get out and seize the day without being dragged down with feeling sick or by experiencing excruciating pain. I suppose the reason I've titled this blog 'confessions' is because a lot of the time I come across people in my life and they generally know the situation what's going on with me but they've never met a dying person before, they aren't sure what to expect so I generally give them the best they'll probably get when it comes to that type of person. I stick my smile on my face and I pretend that I'm not feeling like rubbish and enter the world where I'm not ill and I'm just me. Firstly it's nice to pretend for me sometimes that I'm not the dying girl and it's nice to make light of the situation and I also make those people around me much more comfortable because people generally don't know what to say, how to approach you and whether what they are saying is offensive or not so if I start by saying "I'm fine... I'm good..." If I lead the conversation it generally invites them to be comfortable with me and realise I am a normal person who just so happens to be dying. There is a problem with this though because ultimately people then don't understand the extent of your illness, they assume because you are all happy and normal around them and getting on with things that things are much better than they are but this is what I choose on the whole, the important people in my life see the bad times, they see me cry when the pain gets too much, they support me through all the difficult moments, they know when an "I'm ok..." is actually a real ok. So I suppose what I'm saying is when I've posted a picture of a smiley happy me, or a day out just think about the process that went to getting to that point;- Was there a rest day the day before to allow it to happen? Am I actually feeling beyond awful and covering it with a smile? How many pain meds am I on to get me to be there? How many anxiety episodes did it take to get there? This and so many other questions lie behind everything. 

With my new MacBook purchase though it has meant I have finally managed to give my blog the little update it has been needing, whoop! So finally 2 years after my transplant I have updated my "About Me" page, it's only small but clearly explains the goings on and what has happened since. My "Related Pages" page has had an update and seems more appropriate to these days and finally I have sorted out my "Bucket List" page. Now I have a separate section on it now which is for Chronic Rejection me because there's a lot on the list that was obviously put there assuming I could do it but now it's simply impossible so now I need to think of new things to add to my list the my chronic rejection lungs can do :-) 

As always, thank-you for reading and chat soon
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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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