The last week has been a busy and productive week for me. Work has been exiting with new projects to sink my teeth into (not literally - they frown on us biting our colleagues)
We have continued to work on the dogs training and it is now paying dividends, we are so much happier and more confident with the dogs out and about. We had the trainer back again on Sunday for a 'trip to the pub' training session and it was fantastic with Winston and Amber responding so the techniques brilliantly. There was an incident with another dog and ours barking madly just as we were nearing home which will require another session in a few weeks time down in Dorset with the trainers 'pack' but we can see the light now at the end of the tunnel.
I had a message from the team who helped me publish year 1 in the 'reader friendly' Kindle eBook format, BBC Radio Berkshire had contacted them about the press release and want me to go into the studio to do an interview on air. They want me to talk about MS, Lemtrada as my treatment choice and why I started this blog and continue to update it, why it has been published as a book etc.
It's going to be a great opportunity to generate some really positive awareness that being diagnosed with MS in the current day and age whilst it might be 'life changing' doesn't have to be 'the end of the world as we know it'. I really want to emphasise that stopping the progression as early as possible is key in giving ourselves the best shot of not having that life changing relapse, 'The Big One' that's disabling and could signal the end of our ability to walk or see, our ability to work and run our homes, our ability to keep up with our families and enjoy life to it's fullest.
I'm so nervous, actually when I say nervous what I actually mean is I'm absolutely terrified. It's one thing to call into the radio occasionally with traffic reports and have them ask would you go on air for a moment with the presenter and give more detail. The anonymity of sitting in my car and just being Tracy rather than being 'really me' is safe but this is putting me out there with nothing to hide behind. What if people think I'm pushy and arrogant, deluded and unlikeable .... ARGH .... stoppit you stupid woman you'll make yourself more crazy than you clearly already are.
We had a fabulous dinner at the home of a colleague of mine on Friday night. Great company authentic home cooked Indian banquet food and as I selflessly volunteered to drive my poor husband got to have way too much of our host's generously poured drinks which rendered him pretty 'broken' on Saturday. LOL
I got my oxygen top up Saturday morning (while Gareth lay in bed feeling very sorry for himself) and met a future Speedway star who was there hoping that HBOT would help his broken arm heal more quickly (he was young and quite handsome - it certainly improved the view in the gas chamber - I'm clearly getting lecherous in my old age)
Andy Murray won Wimbledon, Lewis Hamilton won the British Grand Prix and Portugal won the Euros (I was torn on who to support in that one - I really had been hoping for a Wales v Iceland final which would have been a massive shake up for football)
MS wise everything is coming along nicely, after a couple of late nights Friday & Saturday I was pretty tired on Sunday and my legs went numb from mid thigh to mid shin on the walk back from the pub. a couple of hours on the sofa snoozing through some food porn and everything was back to normal sensation.
I sat down last night and decided to read the Year 1 book. I wanted to go back and try to look at last year with a fresh perspective, I'm also hoping it will also help me with the interview tomorrow and jog my memory about things. It struck me that although I don't remember being tired a lot of the time last year I must have been because it's there in black and white, perhaps I'm a little guilty of glossing over the tired too much.
I can see how far I have come since then, I certainly manage the use of my energy much better these days. I can see the patterns which follow missing out on oxygen therapies because 'something came up' and when the tiredness happened. I still go every week, however these days I really make a concerted effort to get there and rearrange things if I need to rather than ducking 'just the one'. The 'tired' now doesn't happen as often as it used to, my energy levels are higher and I'm doing considerably more exercise than I've done in 5 years.
The book is here and the money is going to a great cause (not me) https://www.amazon.co.uk/dp/B01GE1V00M
Please leave some not too harsh feedback on Amazon as it helps people understand if it's been useful.
So if you want a giggle at me choking up in fear and sounding like a teenage boy going through puberty then listen in to the radio show at 10am UK time tomorrow on the 'Listen Live' link on their wed page.
If you're outside the UK you might need to use a proxy server to make it play (please don't ask me how to do this I have no idea - I'm just repeating something a technology person told me)
It will also be on the BBC iPlayer for download / listen again after the show has aired.
I really am bricking it at the thought of doing this
It's been over 7 years since I started on my Lemtrada journey. It's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Monday, 11 July 2016
Round 2 Week 8 - Blog on the BBC this week
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