So in my lifetime experience of being ill, it's not the ill part that's the hard part or at least not for me. I can do the whole being ill thing, I believe that's what I was put here to do with my life, it sounds odd but I genuinely believe I was given my lot in life because I could do this I could persevere through this when someone else might have decided to give up when they were told they would die at various points in their lives. I never have, I've never believed it when I've been told I've got such and such time date stamped on my forehead and after being told at least 3 times in your life you've only got a few years left you just don't quite believe it because I know me and I know what I can do. Give me a situation and I will prove you wrong I might not get through it with a smile plastered across my face but I will do it because I do not bow down in the face of death! I do not idly sit by if told there's nothing more because there is always something and I will always fight for my life!
So now we've established that what I actually find the hard part is that although I can be ill I can't do it all by myself. My 3 year wait taught me a lot, I remember feeling like it was a task I had to do by myself it was job I should not burden people with it because why should they have to deal with this awful situation as well? So I really did try I always had my parents and my sisters but they were already a part of it they couldn't be "un a part" of it, they were already invested! But I could control that immediate circle, no boyfriends because that was a mess I didn't want to deal with and only a few close friends because that's as much as I could handle and my close friends were people already invested or people who completely understood the situation so weren't going to be blindsided by it if I did die.
This time I'm much worse and I have absolutely no choice in having help, I can be as stubborn as mule but even I know I don't have a choice this time. I consider myself so lucky because my mum and dad are still here still willing to do everything they possibly can for me. I so desperately wanted my parents to have a break from me and everything that comes with me. It was a big adjustment initially post transplant because i had gotten to a point where I felt like I needed to be independent and give them time where they didn't have to be at hospital with me and that was hard for them because they were so used to coming to most things with me. But we were getting there and I was becoming a normal 25 year old. Then BAM I'm ill again. I have felt so guilty because I so wanted them to be able to not have to worry about me so much and now it's just all tits up again. I have them at my appointments because I need the support and I've always been a great believer in having more people in the consultant room because more ears is good especially in these situations when things start getting complicated, you know at least one person is bound to absorb something. I'm so incredibly lucky because my mum is one of my best friends, we gossip like old ladies we enjoy shitty Christmas movies even in summer, I'm not at all embarrassed to have my mum wash my hair and help me out of the bath or help me get changed or anything. I just feel awful that she is having to do it and I know I will probably never be able to repay her for it, she will always say "she's my mum it's what she's here for" my mum's priority in her life is her children and always has been there has never been any doubt about that, she may have a job to earn money but her JOB is to look after us and she is simply amazing at it!!! She and my dad are the reason I'm still here, my mum refused to believe one moronic doctor and thank god she did because if she hadn't I would have died.
My dad obviously doesn't help so much with the changing and stuff but he does so much that contributes to helping me. He works insanely long hours so that I can live here without the worries of paying rent or anything, my dad went to all my appointments and operations as a child whilst mum had to look after Candice and Megan and honestly some of those hospital stays are some of my most treasured memories! My dad is one of those people who would drop everything if he can if I needed him. He would tell whoever was trying to stop him to fuck off and just leave. He continues to come to my appointments even with as little as a few hours notice and I'm not sure what me and mum would do without him.
Since my transplant I have attained a unexpected someone. My boyfriend. Now I won't go in to details on here about him because I don't like that but he has become so important to me and my life and I always thought I couldn't be ill and have a boyfriend because I just feel so guilty about putting this incredibly hard thing on someone else. I thought I had time I never thought this would happen this soon so Mark has now be Shanghaied into this situation and I understand that he "gets" it more than the average person but I just feel this weight of guilt that I've put all of my problems on someone else who should not have to go through all of this. I love him though and that overcomes all of that and he is quite simply amazing! He is my favourite person in all of the world and makes me happy just by being in my life. He has been looking after me so incredibly and just wants to make everything we do fun even if it's only a lunch or a walk somewhere (or push now) he does absolutely everything he can do to make my life happy and fulfilling. I consider myself just the luckiest person ever.
The thing though I can't repay them. I can't repay my parents for their lifetime of care, I can't repay Mark for bringing such a spark to my life and being so caring and amazing. That's the problem how do you say thank you to people that you love more than anything? Who you care for more than anything? and who care for you too. I can't and that upsets me because they deserve so much more than I give them.
As always, thank-you for reading and chat soon