So a new week, a new ---- well who knows, really. Each day presents its new challenges and something always pops up to surprise us.
Bloods and the weekly routine was as fun as ever (not), the struggle to get bloods and then as soon as the needle leaves my arm my vein decides to bleed and we have blood running all down my arm. After two attempts we only got a small sample of blood - so I will be lucky if they are able to check and test it, effectively.
A new nurse is always fun, they wonder why the hell you are having so many tests and checks. Luckily the nurse today had seen the news and so was asking questions about Lyme disease and seemed as though she was open to learning more.
I think my blood pressure at 80/48 shocked her a little - but I think it was last night's sins.
I was living in the moment ( or trying). It was fun as always to be back in Media City and there definitely is a great vibe about the place. I had done my research, figured out where to park and where would be best to eat, ensuring there was a bit of everything on the menu for all.
It was a great pick, if I DO say so myself. It was a hip place, with outdoor seating and an amazing vibe. After watching a fab show, as Britain's Brightest Family was filmed in ITV studios we were all enjoying ourselves. I got may have gotten 'too over-excited' and had a cocktail and ate everything I shouldn't, carbs and oils. So now, my body pays the price. Like all my energy has been zapped from me as it fights the toxins I have added to my body.
I wanted to celebrate though, I had experienced a really productive and positive week and now I was back in the place that has become my new favourite place because of the experiences and confidence it had given me, so I wanted to LIVE.
Felt a good decision in the moment …
Wrapped up in the sun and the company.
Then you get home and want to die -- always asking yourself why?? Why was I so silly but I never learn.
People don't see this side of my illness, they see a happy-go-lucky girl, who seems to have it all so what is she complaining about? I know I am lucky, I am SO GRATEFUL for EVERYTHING AND EVERYONE and I never forget it.. I do harbour however a lot of personal sadness and my life isn't straight forward AT ALL.
Going out for a meal and having ONE cocktail is just an average WEEK night for many. Yet it takes me days to re-charge and come back to life after doing the above.
I hide those days from many and still pull myself together because I am so very stubborn and am my hardest critic. Which is good in some ways because I do work my hardest. I CAN'T do a 9-5 job like many and go out clubbing until 5am. I do work around the clock though with breaks in between, but the internet NEVER SLEEPS. A little like NEW YORK, you have to be on it and you don't switch off, you don't. Which is why the hard days are terribly difficult. You want to be proactive and keep up the pace but you simply can't and it is beyond frustrating.
You fear the inner critics telling you are lazy and lack purpose because there is so much to do and you simply can't function properly.
I was gifted with a fab few months work-wise but don't think its simply happened over night, a lot of ground work and endless hours with lots of different people are involved in the achievements and successes that we reach. People often think its just a streak of luck but never dig deep to see all the pain, suffering work and struggling we all (sufferer's and carer's) go through to make a break through. That is why we want to celebrate so much because we go through a lot to reach the goals and achievements we do.
I think its something I need to work on, I am so focused on bettering myself and trying to live the best life possible, for myself but for others too that I put a huge amount of pressure on myself. To keep everything going, including myself!
I do have my 34 head injections tomorrow, which normally do affect me badly in the first few days, and with a low blood pressure already I am going to have to be careful my weakness and dizziness doesn't get the better of me.
We will just have to wait and see what the week has to bring..
I hope we have another proactive and positive week but at the same time I need to listen to my body over my inner critic and be careful ( harder done and so easily said).
I have to say how wonderful it was to see my soul-sister and dear friend Sophie Kenny. From the swimming pool to the bar, all those years on and we are still so close. I am so thankful and grateful for our sister-like relationship and I am SO excited to see her again in a few weeks for the murder mystery night. True friendship love right there! I had such a great night with you - paying the price is worth it.
Moments like the above is why and how we keep fighting.
So we move into a new month, with new expectations and lots more manic plans that lie ahead. LET'S HOPE WE CAN KEEP THIS BALL ROLLING.