Thank you for visiting, I hope you will find this blog of my journey both interesting and inspiring.

Friday, 24 February 2012

Hard times - not for those that know me.

As I hit the ground something inside me broke, a flame that at times burns with a fiery blaze seemed to disappear to the faint glow like that of a spark of an extinguished wick. Rolling over I watched as Ramba, my large black horse, righted himself, shook and with a half glance at me took off into the distance at a full blown gallop. I struggle to my feet but at that point my legs nearly gave way as some fuse in my mind blew and all I want is to lie down in the muddy ditch and cry. I don't, I get up and start to walk after him. Fishing my phone from my jacket I dial my husband and by the time he has answered my words are virtually indistinguishable from sobs as I ask him to come and get me.

After I reach the road where fortunately Ramba has been caught without major incident, I don't know what to do. Walk him back or get on? All my instinctive equestrian know how and in fact most of my social skill seem to have been lost in meltdown. I can't even look my husband in the eye, let alone make a sentence. In the end, I am so feeble it takes two people to get me back on and I trot back and leave Ramba in his stable, go straight home and promptly sit in muddied clothes on the stairs staring into the middle distance and pronounce I will not ride again.

Doesn't sound like me but then I feel like me has gone and I am a merely an empty shell. I don't care, I don't feel, I don't react. How did I get to this point?

Thinking back, its been many days since I had much of a rest; I've had a headache for the past four days and my arms and legs ache. Somehow I have kept ploughing on. But it's not just that, the past week or so has really winded me.

Last week was when I found out about the state of my disease and have spent the weekend readjusting my routine and life to a new drug regime. Saturday the nausea nearly made me throw up when a friend was visiting and would have continued had I not found out the trick of soaking the drug in question into bread so it can't irritate my stomach as much. Sunday I had a meal and saw family and it is because of how much I love them that I find it hard to bear the weight of their pain. Brave faces can be heavy to wear.

Monday nearly broke me; my husband and I spent the entire day in hospital so that I could have bloods take every couple of hours for a whole plethora of tests.

I hate hospital, I've spent far too much time cooped up there to bear it. Even having a canula in my arm is tant amount to torture these days.

An extremely long day of reality being right there in my face; especially when people who might know better joke about getting old. I won't get old and I'd give anything to. Om top of this my husband fields calls regarding getting eyebrows put on with semi permanent makeup so that on the occasions I want to go out and not be noticed I can. We are looking into wigs and I'll have to get false eyelashes too. Sometimes I can look on this with humour; but not today.

So I'm tired beyond tired and yet still going somehow because well, let's face it I don't want to miss out on anything and I can't quite admit to myself that I am not normal and can't do the things a normal person can! There is a big sporting event soon and with my recent feebleness how could I ever take part? I used to be at the front of the crowd now I'm lagging further and further behind eating dust.

So Tuesday again is early doors; pancake breakfast with family. I eat because I have an weird appetite at the moment but then feel both guilty over my chemically caused weight gain and nauseous. The later symptom kicking in just my nephew and niece in law arrive aged 3 years and 6 months respectfully so I temporarily retreat to the bathroom in case I throw up. I don't.

They are beautiful children but I feel an acute sense of loss when I play with tiny M. She giggles and smiles at me; people coo. It hits hard, like a heavyweight right hook to the chest. Lost of people I know have babies or are pregnant and although it wasn't high on my priorities before it was possible and now it will never be for me or my husband. He insists there will only be me and I hate that this disease will rob him too when he is so good with children. Is it disloyal to wish he moves on later and marries again? The thought stings horribly but I love him that much.

So riding where previously a joy and a refuge turns over and leaves me shocked and unhinged. Badly unhinged. Even into the following day I am struggling to even talk to anyone. Mostly I cry. I mourn. I have fallen one too many times in my life I think, and I see no reason to get up again. In fact I am starting to regret ever having got up all those times before. There is a Japanese proverb that states " Fall seven times, get up eight." but what about the hundredth? The thousandth time? I don't think I can anymore.

The only thing keeping me from stopping my own breath at this point is the request of my husband to keep moving; to wash, to dress, to eat. Other than that I do nothing. The future is so dark it is black.


  1. You didn't want anyone that knows you to read this but I know that is purely for everyone else's sake. From someone that thinks the world of you I don't want to look at your situation with rose tinted glasses. I have total respect for you, particularly for getting up so many times (well done Hubby for pushing you when it's really tough). As tough as all this is you deserve to spend the days you have more energy doing stuff that makes you smile, don't shut yourself away. I for one (and I'm sure I speak for many) are here for you whatever the weather. As always, just shout! Xx

    1. Well said Kaori. It still cuts like a knife to hear what you're going through, even though I don't know you in person Vicky, no one's journey is the same, so nobody can tell you how to act or feel. Much love and hugs. Y.A xxx

  2. Once again reading this makes me realise that there are selfless people in the world.you are an inspiration to all!

  3. Its ok for you to feel tired sweet one ,its ok for you to rest in the arms of the one you love,You are such an inpriration to those all around you,A rock for so many ,But maybe now its your turn to rest and thats ok as well,Others that take the path of life as you have will have your amazing words always, to guide them I am praying now for you to feel better again

  4. This is a very brave blog post. I don't think anything I can say here will be big enough but having suffered with Alopecia I can make a recommendation that might, when the time comes, help you:

    Annabelle's Wigs are the best I have found after years of researching and trying them on and the lady who owns this company is very kind and helpful if you have any questions.

    (they also have eyelashes) I am in no way associated with this company, I just have literally tried every wig company available in the UK and found this the best in terms of quality and value.

    Good luck with your journey. xx

  5. One day at a time love. There will be flickers of light to beat down the darkness. Go spend some time with ramba given him a groom and big hugs, inhale that heavenly horsy smell.


  6. im a student nurse in brighton, i will never forget your story read your letter in my cosmopolitan magazine today kind regards charlotte