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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