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| Happy then, happy now....... |
Well 731 days have passed since my life changed.
Today I celebrate the second anniversary of when I fell ill and the new Sarah Hill emerged from a normal existence to a crazy, funny and sometimes hair raising world.
I use the word celebrate as this is what I want to do. It may seem confusing why someone would want to commemorate the occasion but I truly believe that the past two years have left me a better person.
During this time I have laughed, cried, day dreamed, argued, loved, been loved, accepted, fought, been extremely stubborn and most of all been surrounded by people who have walked, carried and held me through the good and bad times.
I have learnt what and who is important and what to ignore. It is amazing how quickly true colours are shown. Those you thought would always be there for you seem to fade away into the mist whilst others stand firm at your side taking to arms and fight in your corner no matter how hard the battle becomes. They understand when you are tired and cannot lead from the front and stand back again once you have regained your strength and want to fight again.
“Why Me?” days are few and far between but they do happen. A good cry and scream is extremely therapeutic. I love the thought of it being cathartic. A bit like the phoenix…fire burning then a new start. It is a fresh time to focus on new things and experiences. The “why me?” days have been colourful especially the hurling of tomato ketchup – it looked like a blood bath in my kitchen against the white walls. The film “The Shining” comes to mind…..
I have learnt a lot since falling poorly. Before I rushed at everything at 100 mph, believing I was living life to the fullest when in fact I was a passenger watching my life fly past me without taking the time to breathe in the experiences. By having to slow down I now can taste the moments and appreciate them. I stop to admire a view or breathe in the smell of the fields being harvested. I take time to watch my children, unbeknown to them, to allow myself to recognise the people they are becoming. I am immensely proud of my children, for the way they have risen to every occasion and the wonderful individuals they have become. They have seen things that children of their age shouldn’t and at times had the World’s weight on their shoulders like mini Atlas’. I know that every time I return after an extended absence there are two massive hugs waiting for me on the doorstep…… who could ask for a better return?
It is very important to me that no matter where my journey ends I do not have any regrets. I do not want to look back and say “if only I had…..” My life has taken on a different spin. I live for the day. My mantra is “Carpe Diem” and tattooed on my wrist as a constant reminder that I should grab as much as I can from the here and now and not wait for tomorrow. I fight a silent foe everyday and know that by living my life to the fullest, I keep it caged up under lock and key. I no longer seek approval from others before making decisions. I feel free.
I have been very lucky to have a new lease of life. Probably because I have life…… It is not until you have investigated your own mortality that you really appreciate what you have.
So what is the next year going to bring?
Well, in the immediate future I will continue to in the same vein. Continue to wheelchair dance with my Angels, buy totally inappropriate shoes in fabulous colours, laugh until my face hurts, cry until I can no longer feel my nose, love my family and friends with a passion, believe in the work I do and fight HUVs with all my might.
In the long term, who knows? I want to make a difference. I want my fight to mean something. I want to achieve something that in years to come I can look back and say “I did that”. A project, if you like…..like my Blog J
For now my project is me. My goal is to be stable enough to be able to stay out of the big white building with it’s blue clad staff. To enjoy the Autumnal festivities and partake in the outdoors whilst watching Mother Nature put on the most beautiful display of colours and textures. Take my children to collect conkers, walk Roxy along the promenade on a crisp Sunday morning stopping for hot chocolate, enjoy my family’s company at the Bonfire parade and plan all the Christmas shenanigans with my nearest and dearest.
Last year will be hard to beat but I think we can do it.
I want to thank each and everyone of you who have been on this journey with me. I want to say how much I appreciate that you read my inane ramblings. I couldn’t do what I do without your constant support and help. The sat nav for our trip has malfunctioned at times but with a bit of luck the roads will now be clear, straight and easy to navigate.
Well here we are…..
HAPPY SECOND ANNIVERSARY xxxx
I am off to celebrate through a spot of retail therapy and a large lunch. I will use the time to acknowledge how lucky I am and to never, never take anything I have for granted.
Until we meet in Year 3……
Love
Sarah
Good to hear you are holding up. It is always a long journey and I follow yours with interest and a great deal of admiration. I guess you are aware of this page http://ainotes.wikispaces.com/Hereditary+and+Acquired+Angioedema
ReplyDeleteYou will see that HUVS is classed as not normally involving C1 INH. In my case it seems that it does and treatment with Ruconest seems to be proving effective so far. Previously used Berinert but developed a reaction to it although again it did seem to be effective. Generally speaking attack frequency decreased to over 7 months (from one every 3 months) and those I did have were quite mild. Been on the treatment for 2 years. It's very expensive though and not sure you can get in the UK unless you can find a loophole of some sort.