Today, I went to see the doctors and nurses at the lovely Weston Hospice Care facility, that’s in Uphill, Weston-super-Mare. The place is just amazing, has beautiful gardens, amazing rooms and lovely people, people I can really get along well with.
The purpose of my visit today, was more of an exercise to get me used to the idea more and more, understand what they can do to help me manage my pain and also help me cope with the stress of everything that is going on.
Explaining the processes of what is going on is hard, bringing myself to the point of making a video about the past two weeks has just got harder and harder. So much has changed in the past two weeks that I don’t even know which way is up and which way is down.
I should really make clear that I am going top continue vlogging everything I can, some things are covered by privacy laws now and data protection so can’t film in certain institutions or places. I will come back with a short video today I hope and explain what has gone on and where we go from here.
Smart moneys always been on not giving up in this situation, I never will give up but I am struggling to cope as a normal human. The day to day things I used to take for granted have now become hard, I find myself forcing me to do them, sometimes I feel like I am watching myself through some thick rimmed glasses, confused at why everything is blurred. Making sense of why these little things don’t work anymore is possibly the hardest part.
Saying that one of the best parts is not actually giving a fuck, that air of anything I do now can’t be as bad as dying and as long as I am not hurting anyone anything goes! That doesn’t mean I am going on drug binges or sleeping with whores, it means I am looking at life through a fresh new pair of eyes. With a fresh perspective on things, those things being the awesomeness that life can actually be if you embrace it!
One of the major things I discussed with the doctors today was my clear inability to understand pain the same way as everyone else, which sometimes can scare people. I see pain as relative to the moment I am in, control the moment then you can control the pain. So, whether that is controlling it through the mind or with medication, that moment must come under control. Sometimes you can’t control the situation and that’s when I need that extra boost, extra bit of help. That is when the hospice step in.
All of my treatment has now stopped, so the only resort for me is hospice care, research and being a guinea pig. I have accepted to become a guinea pig for science, with the hope we find something to help people in the future. I know that may sound stupid, being an experiment for my remaining days with no hope myself, but for me paying it forward to others is most important. Helping other people is important.
On a completely separate note I am still trying to have fun with my life, succeed at the things I want to succeed at and have the best life I can, but the cold hard reality is that I am sick, I am most likely not going to get better and I have to prepare for these things. The eventual end, what happens with my family, my blog, vlog and the things I want to stay there for generations to come!
The answer is my lawyers, solicitor and family will have control over it all, there are a set of videos to be released one a month when I have died to hopefully brighten peoples days and remind them to be good people!
Anyways Much Love!!!
Have a good day and use your time wisely!