Things are... hard. They're quite hard at the moment. I'm not going to lie to you guys because that defeats the purpose of my blog and the very reason I set it up in the first place those many, many moons ago. This is my safe place, where I get it all out to you guys, I spill my guts and tell you what I'm feeling and you know unfortunately a lot of the time that is when things aren't going that fabulously and they just aren't at the moment. It's really nice to still have this place to come to because sometimes I want to say how worried I am and how scared my current predicament is making me but I don't want to repeat it to people and worry them so if I can get it out here that can help I hope.
So for the moment I'm describing myself as stable which is what I think I am, my lung function on my home machine is still not great and isn't really making it's way upwards but it's not going downwards either so I'm not going to say I'm happy but I'm satisfied with it. I'm generally out of breathe a lot at the moment or more specifically when moving and my lungs are in a fair bit of pain at the moment also and I'm trying to work on my exercise but it is seriously hard work, harder than I thought it was going to be. I'm physically exhausted at the moment. I'm barely managing 5,000 steps a day, I managed 2.5 miles on my bike today which I was chuffed with but I need to really be pushing it further and my lungs just don't seem to want to let me do that, it's like a massive wall has just been temporarily placed in my chest and it's all under a bit of maintenance at the moment.
My anxiety seems to have come back with a grizzly vengeance. I'm finding it difficult when I'm outside and it makes me extremely anxious. I went out the other day because I had a few errands to run, I needed my prescription and I wanted to get some fabric as well and just walking around in my local town I felt so insulated and my breathing was just so awful, I felt like people were watching me and because I had to keep stopping as well I felt panicked because my breathing was just terrible and it was just a horrible reminder of my pre-transplant days. I felt like I had made so much progress with my anxiety over the past year it was like it wasn't really there at all. I'm a generally anxious person, social things that I've never done before make me anxious, travel makes me anxious, meeting new people, hospital appointments but they're all little life things that you get over but this blip has just heightened it all and it feels crap to be honest.
I'm finding things to keep me calm though. I'm not sure if I've told you yet but I've started sewing again. I used to be really good at it back in my tweeny bopper days, I'm starting simply and just making cushions, I'm currently making a bunch of cushions out of someones kindly donated clothes and it is the most relaxing thing ever! I love unpicking things! Don't ask me why but just the kind of repetitive motion of unpicking stitches is so relaxing. Maybe I'll do a post one day on some of the stuff I've made. When I went to the fabric shop the other day though that was super relaxing I was in there for about an hour and a half just looking around and I think I may have found another little safe place for me to be and retreat to if I need to. I did come out of there £70 poorer though so maybe it's not that safe really lol!!!
I think the things I'm also finding hard at the moment as well are just the side affects of my drugs the steroids are making my face break out which is just not ideal and I certainly don't appreciate it very much, I have so many bruises everywhere, my shakes are horrendous, my hair is falling out like nothing on this earth and I just feel like everything is just building up into a ball and rebelling against me right now. I just really hope it starts to get easier. It's hard when for the past year it's been the best thing ever and everything's been, well not easy, but it was amazing compared to before and now I'm just have to fight and claw that back and it's difficult.
In all honestly I think a few people have been waiting for this happen to me, I had such a smooth road initially well now it's happened which is good in some ways it makes me continue to appreciate what a precious thing it is that I've been given. So I will continue to try and claw back what I had :-).
So there might be a few more posts than normal just while I'm adjusting and getting used to things again and working through my obvious anxiety issues and I hope that's okay and I'm happy that I still have this place to come to when I need it, it will always be my ultimate safe place :)
I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.
This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.