Keeping warm, sadness and being shattered

I’m writing this in a lovely warm office, without a blanket or coat on. That might sound a bit odd, but my POTs syndrome makes me absolutely freezing. I’ve invested in an electric blanket for my bed and a really efficient heater for my office – it been absolute bliss. I’m just hoping the electric bill won’t notice much…


On the back of my last few blog posts I have had quite a few people ask me how I stay so positive. I’ll admit some days are extremely tough to stay above it all, not fall into the pit. To be honest, I just feel lucky to be alive. I’m not being melodramatic here either – my condition has limited treatment options – but these treatments exist and can help. The idea of the type of tube I have is a very new one (that it does not actually puncture my bowel, where I am being fed). One of my therapies which I do daily came on to the market only a few years ago, this therapy as prevented me from having to go through some serious and risk heavy operations.


I have been told that at the present moment there is nothing more either of my consultants can do for me, which I can assure you was one of the hardest things I have ever heard in my life. It is okay to cry and feel other emotions – its human, just as long as the crying stops and you can slowly try and put the smashed pot back together. I have not lost hope in the slightest, I trust that where there is research (although limited) new things will be developed. I stay positive because I have incredible family, who always know what to do when I’m feeling down. One recent example of this would be my parents – they came in to my room and attempted to do the mannequin challenge (funnier than it sounds). Another way that I stay positive, despite having to spend so much time in bed, is having my family come up and chat to me, sitting on my little sofa in my room and telling me about their day. Equally, I’m not afraid to retreat off somewhere quiet and wait out feeling sad. For me, a little bit is okay. I just can’t spend too long in there.


Last week a magazine dropped on to my doormat. It’s called PINNT magazine – it’s for people who are tube fed like me, or who are fed intravenously (through their veins). I wrote an article for them a while ago, but wasn’t expecting it to make an appearance until early 2017 – but here it is! I wrote about how incredibly thankful I am to the NHS for saving my life, and continuing to keep me alive. The media is so focused on the negatives of the NHS that people may be led to believe it’s all doom and gloom, and I am not denying that services are incredibly over stretched – but they are saving countless lives every single day.


I went to Brewery Poets for the third time on Friday. I was absolutely shattered, could barely keep my eyes open – not because of the company I hasten to add – I just been having very rough nights. I loved the variety of poems that we read. It really broadens my horizons, some of the poems are from genres that I wouldn’t usually read but would now look in to. There is nothing more helpful than feedback from a group of people whose opinion you value.


I had my first proper day back at school yesterday – well, three quarter day, and it was great. I love my house, don’t get me wrong, but after so many weeks it is so nice to be in another environment! I relish the challenge of school – sometimes I sit there in brain fog, but thanks to all the support I get sometimes little snippets sink in.


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