Video’s, tricks and talk

Well, that is it done! Yesterday went rather as I expected, it took far longer than they said it would, that was one thing I was prepared for, I had it worked out in my head as taking about two hours and Sophie was here for two and a half. What didn’t go to plan was that her video camera died after 20 minutes, the other hour and half, was recorded along with lots of note taking. Although it was all for this new COPD site and we talked about my experience of diagnosis and treatment, all of which wasn’t as Sophie expected, but I had warned them that my case was not the normal due to the fact that yes I have Emphysema, but that is only 50% of my COPD, my MS makes up the rest of it. The majority of the time though was taken up with my story of how I have adjusted to life with a series of chronic illnesses and what I believe makes my life work for me and what I would recommend to others, so that they to can avoid depression and live a happy life regardless of losing friends, work and the life most people class as “normal”.

As I expected Sophie had expected to find someone who looked the way most people expect someone who is seriously ill, she even thought that I might have an oxygen mask. It was just as I had expected on that score, showing an invisible illness isn’t easy, even COPD is invisible until the later stages. What surprised me most though was when she said that I still look much younger than I am when I told Adam that he agreed with her, I guess the person I see in the mirror isn’t the same one they are looking at. So much of what we spoke about is just what I have written about here and on Twitter, where of course they found me in the first place. Sophie said they were all blown away by the 75k followers that I now have, we spoke quite a lot really about social media and how I was using it to get the truth out there about how life really is for all of us who live like this. I did take the opportunity to push my idea that the NHS could save a fortune on treating depression if they just taught the chronically ill how to get online and to build up a group of friends for their new life, it doesn’t take huge numbers of online friends if they appear well that wonderful, but a small community can give you a purpose to your day and that is vital rather than letting them become isolated and open to their health going downhill even quicker than it would otherwise. I also took the opportunity to thank every one of the 75k people who do follow me for keeping me going as it is a two-way street, they find inspiration from me and I from them.

I don’t know how it will all be edited as with two hours of chat, there will need to be a lot of editing and how they are going to work it between what is on film and what is just recorded, well I am not sure. To me it felt as thought it went well and that I did get to say what I felt were the important things and a lot that might not be, but I know that it is unfortunately, all part of this sort of process that the final edit may have what I feel are the most important things, never going into the final cut. I know that to Sophie as she didn’t know me at all, I may have seemed OK, but I know that I spent a lot of time stuttering, losing track and talking about completely different things as my brain had lost the plot. Physically, well I was sat on the settee, pinned into the corner, that way I knew that I had more control over how much my body twitches, I wasn’t motionless but under control when she was still filming. Part of me wonders if I did the right thing there or not, but I wanted to appear and come across as clearly as I could, I know for one that people loose focus on what is being said when distracted by the speaker making odd movements. I did also cheated a little, I took a booster just before she arrived as I know that once I have taken one my body is always less animated, right or wrong I made my choice and I went with it. Of course I was and still am very aware that I made loads of mistakes, most that I doubt most would even notice, like the fact I tried to write at least 5000 characters daily, I said 500 words, but my brain is like that, even more annoyingly it also likes to taunt me afterwards, by suddenly showing me the mistake, then showing it to me over and over.

Sophie had arrived in Glasgow earlier yesterday morning from just outside London and she was booked on the 2pm train back, something that sounded like a mad thing to do, but not everyone has zero energy like me, so I guess she will have taken it in her stride. Before she left I asked her about the timeline to the site going live, she thinks it will be about a month and like all these things, it’s all hush hush even the website name and address. I was shattered and once Adam had gone back to work after his lunchtime visit, I headed to bed having already finished off what I couldn’t do in advance from my online life. I was so tired that I didn’t even bother to remove the clips I had put in my hair to stop it annoying me and when I woke, instead of putting on my normal dressing gown, I slipped back into the one I was wearing earlier as it’s smarter, but has a stupid tie inside and a small button on the outside, but it was on top of the other one and I didn’t have the brain power to work out which was easier. A full night sleep has also passed and I am still shattered, I know a lot of people would then just have crawled back to bed, but I know it doesn’t work that way. Regardless of that I am glad that I went ahead with it, as it is the biggest thing so far to come out of my blog and one that fits perfectly with what I set out to do, raising the profile of chronic health conditions and the reality of life with them, finger crossed the ball keeps rolling. It is going to take me a few days to start feeling like myself again, I will slowly come back from this just as I did from Teressa being here last week, the good thing though is I have no plans to spend anytime next week speaking for long lengths of time other than Adam and he knows when to stop expecting an answer.


Please read my blog from 2 years ago today – 16/08/12 – Changes 

There is something about being chronically ill that totally changes your values and views on life, your insight to what life is and how to live it. I know I am not the only person you has spotted this in themselves, as I have talked on Twitter to a few who also feel it. It isn’t that many years ago when I like many others worked every hour I could and I was a loyal and committed worker from myself…..