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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