13.8.17

Dwindling Sundays...


I'm sat on my bed. Its 7pm, it feels like 10pm and I'm certainly wishing it were 10pm as I fight the urge not to just lie down and shut my eyes for a little nap that would inevitably turn into an actual sleep. I'm fighting the urge to not sleep and have been for a good few days now, when the Prospect nurses paid a visit (we'll chat about that in a bit) they changed up my pain meds a little bit so now instead of being on a constant Codeine, Oramorph, Codeine, Oramorph trying to just stay one step ahead of the pain they changed it up and prescribed me a long lasting Morphine called Zomorph. Now it is working and doing it's job and it's definitely treating my pain to an extent, it is however making me a bit dopey sleepy after taking it and I also feel a little sick/nauseous with it. I've been told it'll take a week or two to get used to so just trying to adjust to it a little and decide whether it is covering my pain enough as I do still have to top up with Oramorph as well. We shall see though and I'm just pleased that it's something that gets addressed and not ignored and we have the ability to play with things if I need to. It's hard too admit to people when I'm finding things hard and pain is one thing that I find hard to deal with, I may have a high pain threshold but that still doesn't mean I like feeling pain or like having to figure out a way to get rid of it either I would just rather it weren't there at all. At the moment though my mornings are filled with nausea, some pain and just a overall feeling of not greatness I feel a bit pathetic if I'm honest I just need to deal with it in a better way I suppose. 

So last week I finally met up with the Prospect hospice Nurses that I've been meaning to meet up with for weeks and it's not that I've been putting it off I just happen to have been Norwich or busy whenever they wanted to come and I actually see that as a good thing that I'm too busy to see the palliative care people lol. They were behind lovely though and I love the way they view what it is that they do. Palliative care isn't what it used to be it's not a case of coming in all "lets talk about your funeral" type of deal it's more a case of "what can we do to help you deal with your current situation?" and that's what I need I don't need someone just coming in going "what flowers do you want? what song would you like..... blah, blah, blah." The first thing they've been able to help me with is pain management and that's the initial first thing they wanted to address themselves because that's something they mainly deal in and that is something amazing for me because it was something we finding hard to keep on top of. Then they are being utterly amazing and dealing my GP in regards to my prescription which is a massive stress relief from me and my parents as were starting to have a few issues with missing drugs, wrong prescriptions, just not allowing me to have any at all, it was stress! They were amazing and are liasing with people and I feel so pleased to have met with them and really feel like I have this amazing resource available to me now. Potentially their hospice is where I may die and I will be taking a visit there at some point when I can get the boyfriend and parents off work and together so we can all go and check it out, I've been assured that it is lovely though;- with accommodation for family members, for someone to stay in the hospice with me as well gardens and so forth. They provide relaxation sessions and activities for people if you're well enough so potentially I could go stay there for a few days to give my family and Mark a break and get a Mani-Pedi while I was there. They can also help out with care if there is no-one to be with me on a particular day which can happen somedays as all my family do work. They gave me tonnes of booklets and the one useful one for me is this "Wants" booklet, it's not necessarily a will as it isn't legally binding but it just has suggestions of things to write down so people are aware of my wishes when that time comes but theres no pressure on me to get it all filled out just a as and when I think of things type of thing which is so handy for me I think. I can tell you exactly what I do not want but still have no idea exactly what I do want. It's something to work on though hey :) 

Today has been so, so slow! I have no idea what day it is anymore but I could definitely tell you from the speed of today that it is a Sunday, it has that feel about it LOL. I could once again go on a massive rant to you about my hair but I will not subject you to that torment again it is the thing that upsets me the most though and really does bother me. MY week plans though involve a lot of colouring as I have finally finished a particular drawing that I've been dwindling over for weeks whilst we've been so involved in all this fundraising so that and scrapbooking as well. It's amazing to see how much I've actually done when I look at all the things I have to scrapbook, it's going to be this amazing book or two for people to look at when I'm gone I really hope it's something everyone enjoys. Soon enough we will be getting back to "Stacie On the Road" I'm very excited!! A trips in the works and a new wheelchair to pick up soon so keep your eyes out folks!

As always, thank-you for reading and chat soon
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1.8.17

Speeding along...


You would think being chronically ill and dying life would be very boring, monotonous and slow... I can quite honestly say mine is not, difficult? Yes, painful? Yes, but boring a monotonous really not and especially not over the past 6 weeks. Everything has been quite go, go, go for a while now so I best get going shouldn't I? 

The past weeks have been filled with Fundraising. It has been a really amazing thing to experience, truly, but I can definitely say it is not something I will be doing to this scale again in a hurry. Initially Mark and I just wanted to raise enough money to buy me a wheelchair that could go off road and tackle different terrains easily and make our trips much easier and more accessible and enjoyable for us both. It would tear away some boundaries that are currently in the way for us when we go on our little trips and we could get back to enjoying forest and beach walks like we used to when I was well. The idea was then when I eventually die the wheelchair would then be lent out through the transplant community to people in similar situations to myself and they could get the same use out of it as I did, therefore leaving a little bit of me behind as a legacy. So my Mr Watson decided he would embark on a ridiculous walk here in Norfolk which he would tackle over a 5 day period with lots of people meeting up on the last day which would hopefully raise enough to buy the wheelchair. Before we even got a chance to start the walk we had raised over £6,000 which was nearly double what we actually needed, by this point as well we had decided to throw a "Big picnic" at the end of July as well because we were unaware of how well we would do or how generous people would be. 

With the surprising success of our fundraising we decided that my "Legacy" could be something more if we could raise more money we would, we would just carry on and see how much we could make till the end and then however much we made we'd buy as many wheelchairs as that would buy. The Picnic was possibly the most stressful thing me and Mark have ever embarked on together and that is saying something considering I'm currently dying LOL. It really was something so stressful because getting people to donate stuff to a non registered charity and it's event is difficult and you can't blame them because who just gives stuff to people who come up to you and just ask for free stuff? Exactly it's just upmarket begging really. We managed it though with the help of some of our absolutely outstanding friends and Marks unrestrained ability to keep going. In total we managed to raise £11,000 which means we're able to buy 3 chairs:- Stacie chair, Joshua chair and Adrian Chair. With the amount we raised it also means we're able to get some spokies made as covers for the wheels which will have the names of everyone who donated money to our crowd funder so they also won't be forgotten and get to go on the journey's that the chairs take too. So Fundraising and all of that has been a massive thing for the past weeks and has taken up a lot of energy both physically and mentally. The next few days are, rest, rest, rest! Yesterday I spent the whole day asleep pretty much and even the few hours I was awake for I was trying not to fall asleep lol. 

The past few weeks also saw my 5 year blogging anniversary come and go. I can't believe it has been that long that I have been spilling my feelings out to this little space on the inter-web I remember sitting down to write my first ever post and remember how sad I felt and how alone I felt at the time, this provided a place, a focus for me to put my energy into. I recall I was wearing my oxygen that night and I couldn't get comfortable at all and I remember just being so utterly confused as to how I could be that ill and how could programmes portray dying in such a romanticised way because what I was experiencing at that point in time was god damn awful certainly not what I was watching in movies. Five years on and you've been on a really big journey with me a few near death experiences, A LOT of medications, a transplant, 2 more nephews and a niece and we're kind of back where we started although this time there is no glimmer of transplant lightness at the end, it is just illness and awaiting death but hopefully a good few years of it if I can maintain motivation and stay this stable for as long as I can :-) I think we've done a lot in the 5 years we've been together though and I'm so pleased I've managed to keep at it, people said when I first started it that I would last a few weeks at most as I don't have the longest attention span for some things but I have managed this and that makes me so happy.   

July has also seen one of my oldest and best friends get married! Yes I actually made it to the wedding!!! When they gave me my diagnosis of Chronic Rejection genuinely 2 of my thoughts were omg I have to try and make it to Bernice and Gina's weddings. Something so special about my getting my transplant was that it meant I didn't have to worry about that anymore because transplant was supposed to mean I was well I was going to see all of these things I had been worrying about missing for so long. Chronic Rejection just stole that piece of mind from me and I had to pray I was somehow going to make it to both of them. Bernice's I managed, I was stupidly ill at her hen do and just about got through her day and made it to the end of the evening and we had the best time. Gina's wedding I was a little more worried about making it to. It was July! How was I to make it to July? Somehow I have made it though and I'm pleased to say it's August but I still wasn't sure even up until the actual day of gina's wedding I was thinking "Nothing happen to stop me seeing this, please!" I did it though I managed it I got to be a bridesmaid at both of their weddings and even though I am ill and look so bad in their photos I would not change it for the world because I was there! I made sure I made it there :D 

Next on our agenda is planning a little trip this month just to kind of wind down and maybe do a little bit of testing on the new wheelchair once we get it. I'm extremely excited about it. It's nice to explore our actual country as well, I feel like I've seen so little of it in my time or I haven't but my exploration of it has very much been southerly located so it'll be nice to venture a bit further out see what our country has to offer. 

My eyes are starting to droop as I type this, so that may be it from me for now I will take a nap and I shall write soon, who knows what with but hopefully it'll be exciting! 

As always, thank-you for reading and chat soon
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10.7.17

Losing it all...


I can imagine from the title there may be a few people wondering exactly what it is I'm going to be writing about it sounds a bit ominous, well it's my hair. Now I can hear the groans of those of you who know me and those who have followed me for 5 years "Not again Stacie!" Well I am sorry but you are just going to have to read another rant about my hair and all the things chronic rejection has done to it. 

Illness strips you of absolutely everything. It chips away at you, sometimes really, really slowly so you barely notice it's happening and that's what I would say my experience with illness was my entire life before transplant because it was all I knew and I got more ill slow over time. It wasn't until we hit the last few years that illness demonstrated to me what it really could do, what it could really take away from you. 

I got to a point where it had taken my ability to sleep away from me, to breathe unaided was stolen from me, 6am and 6pm no longer my own dedicated solely to life saving drugs that could be done at this time and this time alone. Walking any further than a few feet virtually impossible, unable to work or participate in society in that way, pulling you away from your friends and the people you love. Unable to go on holidays, day trips, to travel anywhere without it being this crazy ridiculous mission. Illness takes away everything from you and it might not be all at once but it does and it eventually has everything of you. 

You have to try and have little things for yourself and one of my little things has always been my hair. It might seem utterly ridiculous but I loved my hair I managed to keep it so nice through those 24 years of living, no matter how ill I was my hair was the one thing you can guarantee I looked after. Admittedly it wasn't that difficult because I do have good hair generally it runs in the genes but I was happy that I had kept this one thing for me, I could disguise how ill I was with a bit of make-up and good hair no-one need ever know that I was the ill girl. 

Transplant occurred.... I was warned that there would be thinning and some would fall out... I was okay with that, my hairs thick, long, in good condition I can afford some damage and some loss. I got all of that and it was fine it didn't make a tonne of difference to my hair that anyone other than me could notice and that was okay and it was starting to get a bit better by January 2016 but then I started to get poorly again around April time. Steroids, steroids and more steroids.... drugs, drugs, drugs then the diagnosis of chronic rejection. All the drugs and everything we have had to do to treat the chronic rejection has just utterly destroyed my hair totally. 

It's the one thing that has really upset me through this whole experience and it seems silly but when you have everything else stripped from you;- breathing, walking, sometimes talking, sleeping properly, eating, bathing, doing anything alone, holding hands with your boyfriend on a walk. everything you can think of gets taken away so you cling to anything you can and my hair was one of those things! 

So Plan "MULTI-VITIMIN" is officially underway, I am going to get my hair back to some sort normalcy :-) It WILL happen, I'm so determined you don't even realise. Why Multivitamin you ask? Well I took them pre-transplant and they really helped! Also currently I don't eat enough that i can honesty say I'm getting enough vitamins anyway so what can it hurt hey? We will see though guys and hopefully in a few months (If I'm still here) my hair will be showing some benefits :-D

As always, thank-you for reading and chat soon
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3.7.17

Pain...


Pain. How good are you at dealing with pain? I'll leave it to you to decide what I mean by pain, for me when I say pain I mean that of the physical kind. If you're a long time reader of mine or you just know me you will remember that one of my significant worries pre transplant was what kind of pain I was going to have to go through when everything was done. Having been a chronic pain sufferer I knew exactly what pain felt like and I certainly knew there was a limit and only so much pain a person could take, so the idea of waking up from all that and being in more pain than I had already been experiencing scared me a hell of a lot. However I woke up and it was all gone if you remember? I simply had no pain anymore it was just gone and it had nothing to do with pain meds as I had them stopped I simply hit the pain removal jackpot and it felt amazing! As a rule when I had Pulmonary Hypertension I made sure I had as little pain medication as I could suffer with, this wasn't me being some sort of a masochist this was me making sure my body wasn't too used to having a drug and needing more and more to satisfy it's need, I was going to need as much as I could post transplant and I was going to need it to be affective, obviously in the end that plan was a bit in vein but at least had I actually been in severe pain my preparation would have set me in good stead for after. 

Chronic Rejection has been a whole different kind of ball game for me. It has so far been very painful. I don't remember not being in pain since maybe July of last year. I'm stubborn though in the beginning I stuck it out with just paracetamol, saying this paracetamol was more affective on me than the average person because I was just so used to not taking anything for pain but when the pleurisy started and I was crying from the actual agony I was in, even I know that's probably the time when you say "Maybe I should be on something a little stronger..." Now I had never actually taken Codeine before so when they gave these two little pills, which look like they could barely help my cat, I wasn't expecting too much but boy did they wipe me out. I was sat in the consultation room at my clinic appointment with my doctor, parents and boyfriend and to this day I still could not tell you what was said or discussed in that room I was so doped up. Sadly Codeine doesn't still have that same affect on me but it still does it's job nicely and makes me nice and sleepy. Ideally for me I would have loved for it to have been there that my need for pain medication stopped but unfortunately it hasn't been, pain seems to be an ever increasing part of this condition and one you simply have to adjust to.  

Now I am also on Oramorph a form of morphine. I've always had bad associations with morphine and I'm unsure as to why but I've just never wanted to be on it for some reason I very much associate it with death and I suppose that scares me in a way or maybe I'm just scared I'm going to accidentally overdose myself, it's not like I haven't before haha! (Hands up, who remembers the Epoprostenal incident?) I'm on it though and it is the most affective thing for my pain at the moment although I still insist on trying to restrict the amount that I use it. The pain is something you race against and one I've learnt I need stay ahead of especially if I want to live a semi normal life where I continue to get out and about. There have been mornings where I have woken up and thought "Oh... Actually I don't feel too bad this morning, dare I say my chest actually feels alright?" I then end up leaving the pain meds thinking I might be able to get away with it when ultimately the inevitable arrives... the searing pain. I should have just taken the drugs! Now it's a game of catch up you spend the rest of the day in some form of pain because you were stupid enough to believe that your body might actually like you for once and provide you with some relief. The Body lies people... even your own!

I can deal with pain, I've been through a lot of pain I spent the majority of the past 6/7 years in chronic pain my little jaunt into wellness for those 9-12 months was just a break and I'm not sure it wasn't a bad thing for my pain tolerance if I'm honest. I was definitely a baby when it came to experiencing some forms of pain initially post transplant, my first "time of the month" post transplant was actually horrendous (something I've never had any issues with) it felt like I was being gutted! Me being a woman who referred to women who complained about that type of thing as being whimps or baby's because I just never experienced any pain with it they clearly wanted attention or were making a bigger issue of it than what it really was, well apparently the severe pain I had been in for years was providing the perfect cover for that pain. Now I was no longer in that pain it gave way for me to experience new pains or pains I should have been feeling long ago. So mass apologies to my fellow womankind for having thought you were all exaggerating a little all this time. 

I feel like I'm coping well enough with this pain so far and as long as I can keep on top of it I believe I can continue to cope for as long as I need to, I do however worry if it gets worse. I don't want to be one of those people who is just "out" of it all the time I still want to be "with" it, to be able to engage with people and do things, the only point I imagine I will be completely out of it will be when I'm in a hospital bed or at least I really hope that's the point lol. 

The past two weeks have been horrible when it comes to pain but it does finally seem and feel like we may have caught up with it I don't feel like we're chasing it so much now we're taking a nice stroll with it where I occasionally have to reign it in.

As always, thank-you for reading and chat soon
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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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29.5.17

Stacie on the road: Saint Malo...


We went away again! We went back to France to a little Town called Saint Malo, I knew very little about it all I knew was that it looked pretty and not very touristy so a perfect place to go and relax rather than have Mark pushing me all over the shop sightseeing, this was also our "test" to see how I would do on a Ferry. As we've previously discussed I don't do great when travelling and especially travelling I'm unfamiliar with and a Ferry is something I had never done before. So to combat this problem we booked a 'quick' Ferry on the way there but that would require a 2hour and 30min drive when we got there, we were taking the car so that worked out well and by doing a quick ferry first we would ultimately know for on the way home whether I could deal with a long journey ferry or not. 

Our trip didn't start off on the finest form things just seemed to go wrong. Our first hotel we were staying in, in Portsmouth, had been booked for the following day not the day we were actually staying and some sort of event was going on which therefore meant there was no room at the inn but the lovely women managed to get us a room in there adjoining hotel down the road, which perhaps turned out better for us anyway as it was a much quieter venue. During the night I was probably the worst person ever to be in a bed next too, my drugs have made me a mental person when I sleep and therefore I for some reason had a terrible night and was really loud which ultimately meant Mark had a awful night sleep too. Not fun especially when you have to travel the next day. 

The Ferry is now officially my preferred way of foreign travel. It was a lovely way to travel, no stress for me at all. There is a bit of arranging to do you do have to pre ring and let them know about your disability and machinery you may be carrying, whether you're in a wheelchair, oxygen and whether that is with you. They are very good with you though and they have a particular place on the boat for you to park so its as easy as possible to get to and from. The 3 hour journey there was honestly no problem at all I felt like I was merely in a big car or coach or something because the movement was barely noticeable to me and in fact sent me to sleep like it would in a car. So the Ferry gets a massive thumbs up from me and for anyone who wants a relaxing way to travel to the outer edges of Europe :-). 

Saint Malo was such a lovely place to be, our hotel was really quite awesome we had the most beautiful view of the sea through 3 separate windows with their shutters which is a French thing I have always loved! So whichever window you looked out of you had beautiful view but different from each angle. We just got to listen to the sea and because it obviously wasn't their height of season it was uninterrupted gushing of waves and it was just exactly what we wanted. We did also venture into the town where we got to see all their historic buildings and see the Port. The town I would say is accessible to a degree, it has cobbled streets so that's just whether the disabled person can cope with the jittery-ness of cobbled streets and whether your wheelchair pusher also has the ability to push on cobbled streets, luckily I was fine and Mark I don't know how he does it but he combats those streets well! It took us a day to find out how to get onto their famous city walls, there is actually a ramp slope thing up to it and as long as you go the right way around it most of it is accessible there was even a little crepérie up there that we stopped in and obviously had a crepe LOL!

We had a really lovely time there, I did have one day where I was ill which isn't unexpected it would have been a miracle if I had got through the holiday without a ill day. I didn't care though because what a lovely place to be ill in we didn't have to be anywhere, there were no plans other than to relax so that's what we did and it was lovely! 

Coming home we had a long haul Ferry of 9 hours, this was another test, we booked a cabin which ended up being far better than I expected. The room kind of reminded me of a hospital room so I think that's why I felt so comfortable in it, it had a bunk bed and I didn't even feel claustrophobic in it. Even though we were travelling through the day we wanted a cabin because I still had nebulisers to do and other drugs that just aren't really appropriate to do around other people, and 9 hours is a long time so it was good to have like a "base" which we could return to a rest and have a nap if I started to feel ill or whatever. It was totally worth the little extra cost. 

I actually came back from the holiday without feeling totally wiped out and that was a great experience to have had and even though the first hotel situation stressed us out a little for me it was the least stressful I have been whilst we have been doing our trips :-) 

Now to pick the next adventure... where next? Who knows...

As always, thank-you for reading and chat soon
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13.5.17

Stacie On the Road: Bonjour Paris...


I know it's been a while but I just have been not busy but just too preoccupied with other things really to get in the mood to write a blog. I'm really into colouring at the moment I literally just spend hours colouring and I am literally ONE dragon picture away from finishing an entire colouring book. Lame that I have enough time to do that or just extremely determined, you decide LOL. 

Anywho enough of my colouring antics, after my rather important clinic appointment that you heard about in my last blogpost Mark and I now that we knew we could just go abroad should we want to basically said "where do we want to go?"and I logically thought hey Paris is on my list, likely to be the easiest trip to try to do for an initial disabled abroad trip so off we went. Now I make it sound like we just popped on a train and left, that is entirely NOT the case, Mark being the planner/organiser of the two of us did so much preplanning to make sure it was okay to go. We had to think about the fact we didn't have a car so Mark would be carrying all our luggage and pushing me in a wheelchair as well. So we had to really think about what we were packing because not only would we have to pack clothes and all the normal stuff everyone has to pack but also; my oxygen, my nebuliser machine, my mountain of medication, marks mountain of medication. It was a lot. Then we had to think about the location of hotel and obviously the more centrally located the more expensive things become but luckily Mark is great when it comes to hotels and we had a lovely hotel really close to the Louvre. 

I do realise I am meant to be telling you what an amazing time I had and I will but I also want you to realise what the realities of traveling with and as a disabled person is like as well because as I have come to realise some people believe that I simply just go and do these things and suddenly become not ill. In addition to the travel issues I suffer from travel anxiety. It's not something that bothers me overly and is something I generally get over once I'm doing it and going but it is horrendous, a few days before this trip I was a shrivelling mess. I've never been on the Eurostar before and I was just very nervous it was new to me and I just wanted everything to go as smoothly and as calmly as it could not just for me but for Mark as well.

Everything did go smoothly though we had a nice close car parking space to the station, we were escorted to the train through security which I was surprised about and awkwardly I had my nebuliser packed away in the depths of one of the bags so when they say "You have a motor in your bag" you have to think for a second and think what the hell that could be and Mark had to make things that much more hilarious and had wrapped it in a scarf that resembled something the Taliban might wrap round their heads, SO awkward LOL. We got through though and got escorted the rest of the way to the train so when it arrived they had their special ramps that helped us on the train and our special spacious disabled spot and I finally felt a sense of calm. We were officially off to Paris and it was exciting.  

Paris and my initial impressions were of how pretty it was I find it less overbearing than London, the buildings much more picturesque and I didn't feel towered upon. I think one of the first things anybody at all, no matter who you are would notice is the driving, absolutely horrendous I thought London was bad but at least they obey the red light law I'm pretty sure about thousand people that I was pushed passed could have died between walking between buildings they seemed a little bit more sensible towards people in a wheelchair though which felt oddly kind lol. 

Initial impressions of our hotel were really great! Mark seemed to "feel at one" with the hotel because as we walked in his favourite artist was playing over the sound thing and basically the decor was a dream for him, it was really lovely and the staff were super friendly as well. The place was meant to feel like a home from home and it really did feel that way to us. We knew going to Paris for just a few days we were never going to fit in everything we wanted to see so we just took it as it came and did what we could. There was a lot of walking, we saw the Louvre and all that kind of surrounding area, we saw the Eiffel tower. We went to the Moulin Rouge and honestly if you get the chance I totally recommend you go and see it, it was really amazing! There were A LOT of boobs going on and the thing that amazed me the most was that they didn't move, like at all and they were mainly real!!! :-O Someone needs to teach me how to make my boobs immovable! The Moulin Rouge maybe need to work on their accessibility, they said they were accessibility friendly which admittedly they partially were to a point but then we came out 2 flights of stairs from where we started and there were still another flight to go down, so along come burly security men who's job also requires them to carry me in my wheelchair down these steps LOL. It was an amazing venue though and something I can only let you imagine as pictures were not allowed. 

I enjoyed being there so much we managed to go to the Pompidou museum and we sat in Parisian cafes and went to the Notre Dam and road on a bus. We went on a lovely river boat cruise, although I did have to deal with a incredibly rude french man at this point but all a part of the experience hey? We went up and down the Seine after a lovely lunch. I don't feel like I missed out on any experience whilst we were there even though I was in a wheelchair, it was such a lovely few days. I won't lie and say it was all hunky dory the entire time because we were both extremely tired by the end of it, Mark walked over 18miles in 2 days pushing me not just by himself! Yes that was our choice and that's the point at the end of the day we took the decision and decided that us being tired and a little tetchy was worth the trip and I really think it was, Paris was lovely!    

As always, thank-you for reading and chat soon
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17.4.17

The Fight Continues...


Well maybe the blog is a little bit later than I promised but don't be mad it's a hard one to write or to organise in my brain to coherently explain really, I'm not even sure I can write it now but I'm going to try and attempt to. 

Right so on March 29th Papworth had their meeting about me whereby they discussed my entire case everything that's happened and where we are or were or had gotten to at that point, this involved surgeons retired and current, consultants, transplant co-ordinators the whole lot. In that meeting they came to their final decision about whether I should be allowed to have a second transplant or whether it was even possible to do anymore, whether the Aspergillus had gotten to a point where it wouldn't be a danger to me all that lovely stuff. They came to their decision. Now whether rightly or wrongly we had agreed to have a phone-call on the Thursday. One of my original Transplant Co-ordinators rang me, I was in a lovely beer garden in one of my favourite places in Norwich, my co-ordinator really did try and convince me to come in and talk about the results but we know me I just wanted to know the answer. You could totally tell that it was not news he wanted to be telling me. I can't remember exactly what was said although Mark very sensibly recorded it so I can refer back to it should I ever need to or feel the need to depress myself. Ultimately and at the end of the day I was told they had come to the decision that I couldn't be re-listed for transplant. 

I am okay with this. I understand the decision entirely:-

- The cavity has gotten bigger which means it is closer to the walls of my lung.
- The aspergillus although better is still there. 
- There is NO way to test the aspergillus and see if it is dead or alive.
- There is still the blood flow issues of doing a Double Lung transplant on top of a already transplanted heart. 
- There is still the join issues in the lungs whereby they may just collapse.
- The sack around my lungs is stuck to my lungs in reaction to the Aspergillus which is a good thing as of right now as that's what is keeping an aspergillus from getting into me but if they were to transplant they wouldn't be able to take out the lungs without peeling it off and there's a 99% guarantee it would release something into my chest cavity. 
- Ultimately they came to the conclusion that if I had a second transplant I would with great certainty die. 

All my doctors, surgeons and co-ordnators know me very well and they know the kind of risks I'm willing to take and I'm willing to take some risks let me tell you. I was willing to have the transplant before the whole Aspergillus thing occurred and even then it was a risky thing, I was still willing to do it when the fungi appeared but when they basically say to you "You will die Stacie." it would basically have been suicide. It was by no means a majority decision I had people fighting my corner and who still thought I could do it but at the end of the day a lot of people are influenced by their familiarity of me, they don't want me to die as much as I don't want to and by taking transplant away from me that takes away the potential for me to live a long life. So looking at my case without knowing me at all everyone would say no, they phoned hospitals all over the country and asked fellow consultants and surgeons who all basically said they would not touch me with a barge poll. Using a set of perfectly good lungs on me would be a waste they do need to go to some-one who can give them a chance and unfortunately I just cannot do that. It's sad but that is just the way that it is and I knew that it could go that way. 

I think people thought that if this was the way that it was going to go that meant 'this is it, Stacie's going to die' and it does mean I will die but it does not mean I'm going to die NOW. I'm now essentially living with a chronic illness a bit like when I had PH but different. I am stable for now, although I wish we had stabilised me at a better point so I had a little bit of wiggle room the point is I am stable, which means I just have to adapt my life to my new way of living. I feel like the past 9 months has been me waiting for confirmation of how I'm going to live the rest of my life and now I have that confirmation. I haven't asked for any life spans or anything because I just do not need that I don't need a number applied to my life and ultimately they can't give me one anyway it would just be an educated guess that would then rule my life. I know if they said to me "If you can stay stable maybe you'll get a year or 2" I would then hit 2 years and just expect to die and probably start declining and I don't need that. 

So this week I have a fair few things to do and get hold of people to see what we can get in my life to make things easier so stair lift potentially, shower options, potentially care options all that type of thing. I guess the idea now is just for me to get out there and live, my life isn't over it still has so much potential and I didn't name my blog frivolously there is a reason because I genuinely believe Life is worth the fight and it still continues to be I'm still fighting for my life, I won't let myself just fizzle out and die. 

I will have bad days and there may be more of them but I know I have wonderful people in my life who make them better and make my good days just the most wonderful days. This was never going to be a death sentence for me because I have been chronically ill my entire life transplant just gave me a year off from that and you know what? I am thankful for every second of that year, it may have been like dangling a carrot in front of me but at least I got the experience and I get to appreciate and remember it. 

I'm not sure how well this all flows guys but I hope it helps and answers some questions you've been having. 

As always, thank-you for reading and chat soon
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10.4.17

Happy Days...

Disclaimer:- I do plan on writing a blog about the whole health situation and the result that I got in the end, I promise, but firstly it has been a lot to process and I also have an appointment on Wednesday where we plan on having a massive talk, to talk through what happens now and what I do going forward so I promise there will be an explantation as to all the goings on with me health wise and all that jazzy stuff just when I actually have ALL the information too. 

Firstly though let's tell what I've been getting up to, to keep myself occupied and busy and I'm so sorry it's been so long since my last blogpost but I haven't been stagnant or just lying on my death bed I have actually been doing things. After York I really didn't get much better my ribs have taken an absolute age to heal and the problem is I have to keep coughing otherwise I don't get any gunk up and then I get worse so it's a bit of a fight to keep the balance right so for a good month they were in pain and have only just started to feel a little better this week but that did not stop me from enjoying myself. Mark and I threw a March Christmas (!) for us and 6 of our friends. The idea was that I love Christmas especially the prep bit for it and ultimately no matter what Papworth's answer was going to be, whether a yes or a no, we definitely know I'm not getting 60-70 years worth of Christmases into my life so why not hold a Christmas and get to spend it with people who you don't normally get to spend it with?! So we asked our guests to just bring a £1 gift each and that was it, and themselves obviously, and we would do the rest. I was basically chief present organiser LOL, I was told by Mark to just do £1 gifts but I couldn't I gave myself a £5 limit and brought 8 gifts all kind of unisex gifts that anyone might want. Mark added what I would call "duff" gifts like a bottle of non alcoholic beer, unwanted shower gels, you get the gist... anyway so the game was basically a pick and steal kind of game and it was really fun and I think people enjoyed themselves even if the presents weren't exactly premium gifts I think that's what made it a little more fun! I also provided a kind of Christmas party box for everyone that had a few bits in that are classic Christmas;- so socks, chocolate coins  and such and then they could also fill the box up as the afternoon went on. I also put together a "table present" which is a family tradition in my house, after dinner we always get a little present which either has Jewellery, perfume or scratch cards in, so I did my own cheaper version of that. I put glowy, ravey rings and bracelets in there a tester perfume and a £1 scratch card. I think the little boxes were a hit. 

The day as a whole was so lovely! I know it seems silly but it's little things like that, that make me happy, it doesn't have to be some expensive holiday or fancy meal somewhere just a bunch of friends together having lunch was lovely. It wouldn't even have to be Christmas we just wanted to have a Christmas and that didn't even cost very much to do at all. I mean obviously it's not something you're going to be doing everyday but if you can I think it's so totally worth it! 

After Christmas I probably did overdo it a bit so I have had to do a fair bit of resting but it's all good really, I've been really getting into my colouring and I know it seems completely sad and lame for me to be excited about colouring but really guys it is just so relaxing. I haven't been having a bad time with my anxiety but sometimes it lingers there in the background, people who suffer with it will know what I mean, but when I colour it's a focus on something else and takes my mind off of it. I really want to get back into reading but since transplant my concentration levels when reading are just not there at all, I think it's the prednisilone, so I may have to work my up with that one. 


The next big activity was HARRY POTTER STUDIOS!!! Now long time devoted readers will know how much I LOVE Harry Potter the franchise and how ingrained into my life it is and will also know I have actually been 4 times previously. It has however been a few years since I've been and they've added a few new bits to it since the last time I was there and I've been wanting to go see them especially as they had literally just opened the forbidden forest exhibition bit and I was desperate to see the train as well. This time my lovely bestie Bernice and her Husband Scott came along and just omg we had so much fun. I didn't get on a broom this time but then I already have a tonne of photos of me on a broom so there's no need for any more really and Bernice wanted a train picture instead buuuutttt we did manage to persuade the boys who have never been on brooms to go on them and I can honestly say it was the funniest thing I have witnessed in my life. For two men who were adamant they weren't getting on them, they got pretty into it! We were proud of them! 

Right so the reason it's quite a big thing for Mark to have gone to this with me is because he's NEVER read a book of Harry Potter and had never seen one movie either until I forced him to a few days before to watch the first one. Don't worry though guys I think he enjoyed it as much as someone who hasn't grown up with a franchise can I guess, there's a lot that he's able to appreciate in how it's made and all that type of stuff so it wasn't completely wasted on him and I am making him watch all the movies, it just may take some time, we will get there though!!! 


So those were a few of the things I've been getting up to for the past few weeks, we did actually attend a ball as well which was just lovely even though finding dresses has become very hard work because I can't try anything on, so annoying!!! We've been having fun though Marks VW camper van is out of hibernation and he managed to get her going which has been lovely because it has meant we've, managed to get out to the coast and we'll be able to do that more as the weather gets nicer as well. 

Obviously this blog is a little bit vaguer than I ideally would like but I don't want to go posting a blogpost with half the information if that makes sense so I'm sharing the nice stuff and then once I have all the details with absolutely everything like plans, moving forward, treatment, travelling all that type of stuff I can give a much clearer view of everything so you can understand it better yourselves because I know when I shared the information last Thursday a lot of people were quite shocked and probably weren't quite sure how it had gotten to that point. So if I can give as much information as I am able to give then you guys can process it in a much better way. So I promise to blog Wednesdays appointment and I'm going to warn you now it's not likely to be pleasant and very blunt so positivity may be lacking in it as it will be very much just "this is the situation, this is what's happening" 


As always, thank-you for reading and chat soon
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4.3.17

A York Tale...

Once upon a time a girl named Stacie and her Boyfriend decided to pay visit to the historical cobbled streets of the City of York. York was a fine City with much to behold however Stacie's lungs were being total utter poo-bags from the moment they left the lovely land of Norwich and continue to torment her still. This did not stop the pair from having a most joyous time though and Stacie also discovered on her journey that she is pretty sure she's invented Car Narcolepsy.... The End. 

Okay so not really "The End" but that is basically my York Tale in a very basic non informative way :-D. We did go to the lovely city of York though, honestly it really is a beautiful city with history just seeming to ooze from everywhere I felt quite at home there, it felt very much like Norwich to me and feel very much at home here, well obviously as I basically live here half of my time. The journey up there was much longer than I had expected I guessed it would take about 2 hours but nope it was around 4 hours so boy was I wrong. Pre-warning to anyone who ever has to do a road trip with me, I cannot stay awake in cars! Like at all. I've been saying it for days but I'm pretty sure I have some from of Car Narcolepsy if that's even a thing (which it totally is I reckon), no matter what I do I just cannot keep my eyes open in a moving car, mid conversations I'll just be nodding off with my eyes slowly closing and my head doing the whole head bob thing. It's a problem, well not for me just for the person unfortunate enough to be in the car with me :-/ 


I think we really did manage to pack quite a lot in, in the short time we were there. First off we went to the the York Minster, I now know that Minster just basically means Cathedral. I love going round places like that, I'm not religious as most of you know but religion is part of our history and is something that is still interesting to me. During my degree I never got on with the architectural history of things but I can appreciate the beauty and skill it must have taken to build and make a building like that, it truly was amazing to be inside of it. We decided to light a few candles whilst we were there as well, it's not something I've ever done before as I'm never quite sure what lighting a candle is meant to "do" but it seemed like a lovely gesture that would be of some meaning especially in that venue. So I lit a few for lost friends and my donor and it felt special for them.


We then made our way to "Betty's Tearooms," everyone and their dog told me to go to Betty's and you know, who am I to say no to a afternoon tea?! I enjoyed it in there and it was lovely, one waitress kind of ruined the experience for me as she just seemed quite rude and I understand she may have been having a bad day or something but it just kind of put my back up from first interaction I'm sure any other day and she would have been lovely. The tea was lovely though and the sandwiches were actually sandwiches that I could eat, non of this flouncey crap added to it! and obviously my scone was super yummy. It's always hit and miss when it comes to the desserts on afternoon teas but I got kind of 2 out of 3 the chocolate truffle thing was amazing, but their Macaroon was odd it wasn't bad but it was Apple and caramel both of which I couldn't taste at all but it was still OK. Then there was a tart that was just eww but that's because I really don't do pastry so no-ones fault there. 


We stayed in a lovely hotel called the Hotel Indigo so if you're ever there I would completely recommend it, it was really close to everything and made life really easy especially with the wheelchair. Our next day was just as busy, we went to the Train museum which I know doesn't exactly scream excitement or anything but I find that the kind of stuff really interesting and they had some of the Royal trains there!!! They were really cool to see and is it not just really cool to see how we as people have evolved over time in regards to the way we travel?! How at some point in time going a meer 70mph on a train was seen as some kind of death defying stunt and now we're annoyed if it's not hitting it's target of like 190mph. We did some walking around gardens and the river and stopped for lunch as well, it was lovely to just sort of meander and we went down the Shambles as well, certainly can't say that was the best street for a wheelchair LOL. Our evening was dedicated Ricky Gervais, I didn't really know what to expect when seeing him as I don't really have a opinion on him but he was funny, there were a few moments were I was a bit like "Oh that's probably not OK..." but I think with any comedian you go to see you'll get that so sometimes you just have to expect you'll hear some jokes that push the line.


On our last day we just sort of took it easy until we had to check out of the hotel, or I say "we" took it easy, I took it easy whilst Mark ran around crazily packing and making sure we had everything. Honestly I understand why disabled people just don't make the effort to go places sometimes because it really is such hard work for whoever is looking after that person and Mark does so, so much. The plan though was kind of on our way home we would visit a few of the outlying villages of York. The weather was not great but still okay enough that we could enjoy it and my "Car Narcolepsy" seemed to be kept at bay :-D 


As lovely as our trip was, it was tinged by my lungs being utterly awful to me. It's hard to figure out sometimes because it could just be a muscle, it could just be phlegm sticking in there, it could be pleurisy or just a mixture of all of them or you know it could be something altogether different that I have yet to experience and have a name to put to. Whatever the case I was dosed up and still am, I'm paying for the days away at the moment and I wouldn't have it any other way but I do wish my body could just be nice to me sometimes. Why do I have to "pay?" Why does me and my body have to physically pay for a nice few days away with my boyfriend? And not just me really because he in extension pays too because he then has to look after me more not just physically but mentally as well because I start to get down about the fact I'm paying for having a nice time and why can't my body just do as it's told? Charge me £20, £50, £100 I'd pay that! I would just budget it in. Annoying as it is it's the way it goes and just part of my life now, I just need to grumble about it every now and then. At least I got to go away and have a lovely time with my wonderful human and make more lovely memories with him :-)


As always, thank-you for reading and chat soon
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