Yesterday was a tiring day, I won't lie - I was thrilled to see my bed when I got home but what a great day it was in many ways.
To many of you, my trip yesterday for my annual review was just another day wasted waiting for transport, travelling just for a hospital appointment. It was so much more than simply an appointment though.
It's almost actually a year to the day since I last visited Breakspear, I have had bad blips since which have left me in general hospitals but I haven't been back to Breakspear for a whole year. Don't get me wrong, I still have phone call's with my consultant and we try new treatments tailored around my symptoms which are bothering me most at the time. The support is always there, if and when I need it and from the bottom of my heart I wouldn't know what I would do without my consultant - he is my life line! He has helped not only me but my family help keep my health stable & offer advice when we feel lost, clueless and don't know what we need to be asking for when I need medical support closer to home.
My reviewed showed that clinically my health hadn't declined, it was exactly the same and nothing had deteriorated. Which OH MY GOD is like THANK THE LORD news. I do, as you all know have good and bad days .. at the present time I KNOW that the likelihood is I won't have a miracle of a full recovery , although we never lose hope on that dream. I know that my disease is a killer, even if the professionals still want to act ignorant towards that fact. You can see my frame of mind as negative in this sense, but I like to live in the reality not in a dream world. I want to know the truth, know my facts so I can mentally prepare myself in strength and positive mindsets to get through the tough times. We can't keep our heads in the clouds and I refuse to do so.
So keep things stable is KEY, and good news.
My liver and spleen were still inflamed but not enlarged which is GOOD we would have to worry if this became the case.
The only thing that has got a little worse were my lymph nodes in my throat. They were very inflamed and very tender to touch. This is most probably the result of all the farming and muck spreading going on around me. I have to run for cover when I see the tractor appear because my chest tightens, my lungs begin to burn, my throat gets hot and begins to burn and my ribs ache. It is horrible and scary because you fear you will just stop breathing. Yet, my consultant - always positive said that it is good my body is reacting as it show that my immune system is fighting back. ( Which of course we need it to be doing).
Of course weight wise, I had improved a lot and that was the main improvement and highlighted success health wise on my review.
There are a lot of treatments out there for chronic Lyme suffers, they are expensive and a lot of the time require you to be stuck in the hospital most of the year. I am so thankful and count my lucky stars that my body is too weak for antibiotics and more intense treatments because it means I can treat myself in the comfort of my own home with herbal treatments - immune system boosters and vitamins to help keep my body fighting and surviving. I must stress NO TREATMENT is right or wrong at this current time, as lack of research means there isn't a magic cure ( which is what we fight for everyday.) I am able to use herbs, but many have to use antibiotics and their body's tolerate and react to them well. We are all unique and different not because of our DNA and genes but because we all have different weakness areas and suffer with different co-infections. So our bodies fight these infections differently and people are faced with different symptoms. I do recommend Matt Dawson ( who also suffers with Lyme disease) his Bioglan range from Holland and Barrett. It is my LIFE, along with unsweetened Alpro yoghurt of course! Yes, his range is amazing, chocolate powders to fight fatigue, immune system berry tasting powders packed with vitamins that you can add to fruit, salad, yoghurts and smoothies that have heaps of nutritious vitamins and protein. Definably worth a shot - its going to give you a vitamin boost if nothing else. We are all at our wits end and will try anything if it makes us feel, even just a LITTLE better.
( I will do a post on how I approach dealing & living with chronic illness, in hope it help you all, in some way relate or find new things to try).
Remember we are ALL DIFFERENT and I am not here to preach that I do everything PERFECTLY because GOD I've made some MASSIVE mistakes, I still have naughty days, I test my body, I am not always kind to it ( in the sense I eat the wrong things and put my immune system under extra strain) . I am only human - I am just trying to live, as much as I can.
What else really pleased me was that my consultant was so impressed at my media work and how well I spoke on TV when he KNOWS his stuff, he lectures all over Europe and does a lot of research so for him to say I spoke really well and did myself and him proud MAKES ME BEYOND WORDS, HAPPY. It was the best compliment he could have paid me. Seeing all the nurses again also made my day, after-all they have seen me on the days I thought I might die and have fought to stabilise my body when my body has herx'ed so badly from more intense treatments. I know my infection levels in my body are high from my test results and in many ways that is why more powerful drugs are too intense for me, my body can't fight EVERYTHING and begins to shut down not knowing WHAT to do. But maybe this weakness is a blessing in disguise because although my Mum, bless her heart has to care for me, I am in my own home, around loved ones and my own surrounding. My body is still managing to fight for itself, and I need to be grateful to it for doing that, count my lucky star but be SO GRATEFUL and enjoy this time where my body is MANAGING. SEE EVERY CLOUD HAS A SILVER LINING, EVEN IN NEGATIVES WE CAN EXTRACT THE POSITIVES.
After all, there is so much more campaigning and work left to do. I have some exciting times ahead and I want to enjoy every minute, protecting and enriching lives.
My consultant said I had grown -- I think the real thing that has grown is my confidence because I am fighting back and although the waves are so very strong, I am too stubborn to allow them to wash me away without leaving footprints in the sand. Somehow I've managed to make negatives into positives!
You may have seen this morning Dr Hilary on Lorraine ( you can watch on catch up) at approx. 9.05am explaining the danger of ticks and how debilitating symptoms can become if left untreated. Thank you, ITV and Dr Hilary.
We keep fighting to have our voices heard and to protect people.