Rare Disease 2020 February 29th

#rarediseaseday2020 #rareandproud #rareandstrong


But I reiterate underneath all that and all those #hastags, I’m still struggling, I’m still battling very difficult health and most importantly I’m still coming to terms with my own prognosis and life in front of me fighting the complex conditions I do.
But all that is okay, understandable and normal.

On the evening of the 29th February today I’m fighting in hospital, again (been in a month this upcoming week). Fighting resistant infections, abscesses, with a very comprised immune system which is not only low but also attacking in on itself too and lots of complications.
I battle lots (like many of us out there) and I’m exhausted so can’t go into as much detail as I’d like but in simple terms I have EDS, Ehlers Danlos Syndrome which for me then causes secondary conditions of POTS, Postrual Orthostatic Tachcardia Syndrome and MCAS, Mast Cell Activation Syndrome and it all causes multi systemic problems, externally and internally, so I’m a full time wheelchair user, I have bladder failure, intestinal failure (the latest on my latest surgical notes and that’s something I’m still hugely struggling with), gastroparesis, hypoxic and RAS seizures, respiratory complications, steroid dependent, immune compromised, constant infections, chronic pain and more. I have multiple tubes to help me feed, go to the loo and a central line to administer vital medications. I spend half my life in my regular ward with my nurses and doctors and hospital really is my second home and second family. I’ve had more procedures than I could count, more surgeries than I’d like to relive and more close shaves, blue lights into resus and life saving care in intensive care than I’ll ever want to remember but at the same time I wouldn’t be alive without them so I’m also eternally grateful too and I’m still here to tell the tale and to keep fighting and that’s what matters.

But in reality my life, our life as in not just mine but my families and closed loved ones too is lived in a 24/7 medical bubble and sometimes I want to scream, shout and cry “why me, why did this have to happen to me and shatter not just all my dreams but my families too? Our whole lives turned upside down and inside out? Why? This is not fair? This is not the path we were meant to go down?”.

And you know what? In answer to that?
No it isn’t fair, it bloody well isn’t fair at all and that’s a fact! We are human and although are definitely warriors fighting through a lot of adversity we are also not super human and we have struggles and real feelings just like anyone else. Who deserves this life or all I’ve/we’ve been through and our poor families have too? Anyone, really? No one does and living with a rare disease and multiple, complex and life threatening conditions day in day out is hard, really bloody hard and not enough people say it for fear of judgment or fear of not being seen as strong enough, being weak? But to me strength is the complete opposite, it is reaching out, being honest and admitting the truth that it isn’t always sunshine and roses and that’s totally okay, normal and completely understandable for the situation we’re in.
So stop being so hard on yourself and be kind, no not just to others, to YOU, to you and YOUR rare disease.

Also, back to the statements said above. It isn’t fair no, and yes a lot of our dreams have been shattered and I know that feeling more than most as do many others reading this I’m sure and finally yes our paths have definitely gone down different routes to first planned and that still breaks my little heart and some nights I can just suddenly burst into tears remembering all I was going to do before my body broke down into pieces right in front of me.

But.. that doesn’t mean this new route can’t be good too? Right? Yes unplanned and different but not all bad? I of course can’t speak for everyone but for me I often need to remind myself of all I have achieved despite the conditions, despite every obstacle put in my way and despite every organ slowly pulling me under one by one, I still manage to hold on and to find ways over them, somehow, even if I can never win the war I will still try win the fight, however small it may be and I have achieved, despite it all, I have, we all have and we all need to remind ourselves of that especially on days like this.

In the last five years..

  • I’ve come very close to death, faced life changing decisions, surgeries and heartbreak, gone through more medically than I could ever imagine or wish upon anyone I know and overcome things I or my team never thought possible.

  • But I’ve also..
  • Wheeled down a catwalk in my bikinis, in Trafalgar Square in London, twice #therealcatwalk #proudtobeme
  • Done multiple interviews about me, my disability, story and Willow saving my life as my assistance dog, including one for BBC London with my own mini video being made all about Willow and I because the editor loved how we spoke so much.
  • Raising awareness of my story, disability and embracing being different all the time.
  • Done over a dozen and more talks, public speaking, to Brownies, Guides, Scouts and over 20+ talks to local adult groups in the area and School assemblies Talks and workshops with primary school children aged 7-11.
  • Being scouted to join a modeling agency, the wonderful Zebedee Managment who have given me incredible opportunities in both the modeling and acting world.
  • Done some amazing modeling shoots, campaigns and photos I’m so proud to show and acting work I can’t wait to see come out in both a big feature film and smaller dramas and short films with LFA.
  • Found my gorgeous Willow, brought my first ever dog home and now fully trained through Dog Aid as my assistance she not only helps me every day but also is trained with medical alert too, she is my literal lifeline who at such a dark time gave me my independence back.
  • Got creative and in hospital over the five years recorded over 100 videos, written and kept three personal scrapbooks and sent out over 100+ cards to friends online who were and are struggling.
  • Lost old friends and found some new ones. Both online and in person and these our friendships that have got me through the hardest time and I’ll treasure for ever.
  • Found my basketball family, even when I can’t play or go for months they’re still there supporting me like now and also found my newest Shed family which I’m so grateful for and can’t wait to do more of but again they could have given up on me with me missing bits due to me being in and out of treatment but they don’t and I’ve got a Shed family for life there.
  • and last but not least I’ve just found the joy in the little things of life.

    Health and life is precious and I and our family know how easily it is taken away and one minute I can be chatting like this and the next I can be in intensive care fighting for my life so we live every day to the full and make the most of every moment.
    Family, friends, loved ones, experiences, moments, happiness, laughter, those real smiles and giggles where you can’t stop till you fall on the floor or start crying hysterically, that’s what life is all about. Being grateful for what we have, who we have and making the most of it all, as it can change in an absolute flash.

So yes my path wasn’t what I planned, not at all. I thought I would be married by now, 25, house, thinking about kids, the future, doing my dream nursing (or play specialist) job that I absolutely love and living life to the full! Instead it’s a little different..
just a tad.

But I’m still trying to live it to the full and fill it with people who make me smile and feel happy which is all we should all want, single, partnered or not. Love is around us all, in all different types of relationships and we should treasure it, always. Just like our health it’s very precious too.

But back to that path.. look at what I have done? Yes not what planned but still lots, especially as in those five years I’ve spent at least 30 months of those as an inpatient in hospital (no exaggeration). Be proud of that and yes it’s different but it’s still achieving and as long as you are happy with your life and what you’re doing under your circumstances, that is all that matters. (But you’re allowed to also let it out and not be okay too, always, even if it’s just you and me, you are not alone in those feelings, I feel them too and we can let it out together, no one should face anything alone, no one, especially in this day and age).

Anyway, my brain is getting slightly fried here, I’m just finishing my treatment for the night, well more antibiotics, two more infusions and one injection to go (nearly there!)
So I’m not quite sure if this all makes sense what I’ve said but I hope so? Or at least some of it? Let me know, fingers crossed it does and if it helps you, makes you smile or even want to comment or share please do. That would definitely put a smile on my face too.

That’s my ramble for today..
I went slightly off on a tangent but hopefully a worthy one if so! Thank you so much for reading if you have and if you’ve enjoyed that’s even more a bonus! Let me know.

In the meantime, keep being you, rare or not, you are ALL beautiful, ALL awesome and Willow and I love you ALL lots ❤️❤️❤️

2 thoughts on “Rare Disease 2020 February 29th

  1. Your writing is poignant and thought provoking. I really hope there are some notes forming for that book . Makes us all reflect on our own lives . Xx

  2. You are truly amazing, Ruth. We are so inspired by your attitude here at Woodside. You had a profound impact on the children in Y5. Are you able to send me your postal address (home or hospital) as I’ve some cards to send you? I think you have my email – I did send one to you yesterday so I’m just being impatient!
    With our love

    Debbie Bowers (Woodside Junior School)

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