Monthly Archives: July 2015

I’ve lived life from a wide angled lens…

My book, a preview…
Quality over quantity is so vital!

My prognosis…  A shortened life, but a darn good one!!!

I might be a qualified teacher, but I come from a working class background, with a profoundly deaf father too, so my English level isn’t fantastic…  So forgive me.

I made it through sheer grit and determination against the odds – a headteacher that at one time adored my spirit but lost the core me when I became sick.  But I lived life, right up to the end…  That was just me…

I want to leave the story of a life i’ll truly value, a life that I’ve seen the good in, despite the bad bits, because without the rain, we don’t truly value what is.

Here I am today with two amazing boys, an ex (who I’m still married to but separated from), an angelic carer and true friends that I’ve found on my journey, and a dad that is facing what is indescribable – the loss of not one, but two daughters in his lifetime.  And my life has been predicted as shortened, due to the horrendous meds we have to endure to be able to get out of bed…

But I’m not remorseful or angry…  I’m blessed with a professor who understands that I truly want to live now!  A family who appreciate my limited memories & an angel late sister who guides me through it all.

I’ve known for a long time that this hereditary risk was plaguing me, but I ignored it and just got on with life.  Those many, many times when I just knew, I brushed under the carpet.  A lesson I’m now crazily hyper aware with my own boys, as by the time I was diagnosed, it was just too late.  It had a big hold on me, after even more years of misdiagnosis…  I was doomed at the onset, and my prof just knew it.

But I wasn’t ready to risk my life with a stem-cell transplant, the odds where just madness!!!

So I accepted my lot, thinking that disability was my major issue…  But I was wrong, these meds and the disease itself are killers.  So I’m now on deaths row, living each day as a blessing.

But I don’t regret it, I’ve been here for my boys, and I’ll live the rest of it with everything I have!

That’s not so easy from a Spoonies perspective.  Being a Spoonie means that I live each day with a limited amount of energy (or spoons), so I can’t do the endless amount of things the healthy person can, I’m limited by energy – a chronic, systemic illness like mine, zaps, so fatigue is huge! – so my life is restricted much more by fatigue than disability – it’s immense!

No-one can understand this unless they either life it, or live closely, and I mean very closely to someone that lives this way.  It’s just impossible to understand!  But trust me, this fatigue is extremely debilitating!

Being in a wheelchair is nothing compared with this fatigue, it’s sooooo disabling!!!

But let’s move away from this, you get the picture, and here I am, telling you how I’m living life to the full!  I truly am, just in a different way than the ‘healthy’ person…

But I’m grasping life…  I’m going for it,,,  life is too short after all…

Join me, I promise it’s quite the ride!

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Chill zones 💤

I’ve spent a lot of time making my home perfect for my Spoonie needs 👍🏻. I’m here 24/7, so why not create a home I love?  After all I need it…

My sofa at nighttime – cozy lighting, a comfy footstool and a homemade blanket, perfect for the too frequent insomnia.

My comfy recliner and footstool, for those spoonless days…

My bed – a canopy and fairy lights to make it cozy and comforting.

And also my relaxing hammock seat for those days when I need to meditate.

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The Summer Break ☀️

It’s a love/hate time of year, the summer break…  I adore spending quality time with my boys, but it’s hugely spoon zapping, so a double edged sword.

I’m feeling pretty spoon less 🍴 at the moment, so I plan to rest up as much as possible for the next week, in the hope that I have more energy.

The plan is to have little outings once or twice a week, with the help of friends or my carer, so the boys are content and will happily have fun whilst I rest in between.  I’m also lucky that my eldest son cadets camp co-insides with my you tests break with his dad, so I’ll get a big rest (5 whole days) after a few weeks 👍🏻👍🏻👍🏻

It’s a tough time, but we’ll make some lovely memories 😄

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Happy Birthday 🎂

It’s my birthday a month today!  Being in the middle of the summer holidays, it often means that it just passes by, so my wonderful Jay has a plan…

I decided I don’t want things as gifts, I want fun, so he’s booked a fabulous hotel break for September, when the boys return to school 👍🏻👍🏻👍🏻

I’ll be relaxing in a beautiful room, enjoying a jacuzzi, ooh pain relief, and a wonderful dinner 😉

The perfect Spoonie birthday!

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Steroids, steroids and more steroids!

After many years on high dose steroids I’ve endured some pretty nasty side-effects 👎🏻👎🏻👎🏻. But thankfully, so far the wonderful NHS has helped me 😉

My osteo has been controlled, first with pills and later with IV’s and now it’s settled to a good level, so I can just be monitored until it kicks off again.  Plus now my steroid induced cataracts have been operated on, so I’ll be back driving and reading again once I get my prescription for new glasses 👍🏻👍🏻👍🏻. My high blood pressure is controlled too with needs 😄

There isn’t anything they can do for my cushings sadly or my prognosis of a shortened life expectancy, but at least I can enjoy the time I do have 😉

Being told you will leave this earth early gives you a very different perspective on things for sure!  I will live each day to the best I can, spoons and pain permitting…

The wheelchair isn’t holding me back, so why let the rest of this darn illness get me down?

Each day is a Lessing to be celebrated!

Live life to the full folks, despite everything…

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The summer break is on the horizon…

I love time with my boys, but the summer holidays are tough!  I have a plan…

Balancing energy levels with fun days out, so that at the end of the break my boys have had fun, but I’m still smiling 😄

Just one or two little trips each week and a few days away at a relaxing holiday lodge in between 👍🏻. Centerparcs is ideal for us Spoonies since my boys can stay busy with lots of activities and I can enjoy watching, then rest whilst they go off swimming etc., perfect!  Then you he days out are mixed so that some are less spoon zapping than others.  Spread these out and I get lots of rest days too to recover 😉

Just relaxing in the garden on some days, a little wheel along the canal or in a park others, mixed in with exciting days out too.

We’ll make lots of wonderful memories…

Enjoy your summer, whatever you do.

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