Monthly Archives: February 2015

Making the most of my days…

I’d love to be able to fight!  To start a charity to raise funds for research into rare diseases like mine.  Hey, maybe it would even bring about something that would prolong my life too…

But I can’t, I just don’t have the energy for such a commitment…

But that doesn’t mean I can’t do something…  There are over 20,000 of us together here at Spoon Shortage, twenty thousand people!  And it’s growing everyday!

So I can spread awareness, encourage others to look on things positively and join together in supporting each other through.  I have dreams, I have hopes, maybe one day I’ll have spoons for more…

But for now this is enough…

Help me raise a little funds through t-shirt sales so I can raise more awareness 👍👍👍

First step awareness, next step, who knows…

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The Perfect Break!

We went to Scarborough for a few days, and I managed my spoons perfectly!  I was so delighted!!!

After the drive on the first day, I just rested in the hotel.  The second day we visited the beach and lighthouse, then rested in the room, then a small museum around the corner.  Next we visited an online friend where we saw the lifeboat centre and ate lunch.  Then the last day we visited a military museum and the sea life sanctuary. After lots of sleep I then tackled the return journey, which was the hardest part – lots of pain!  But sooooo worth it!

I’m delighted that I made it through!  Just 2-3 hours out each day, with lots of rest in between too was just perfect!

I was zapped in the evenings, so slept very early, but my boys had a great time with crafts and their technology in the room 👍👍👍

The ideal break!

I can’t wait to go back and visit my online sis again later in the year 😄

Lots of rest since returning home, and a boost from my biologic IV and reflexology and reiki, and I’ll soon be feeling human again 👍👍👍

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Endless days…

I was inspired by a sentence…

“Running out of spoons before running out of day”…

An online friend, the lovely Meli had a dream about a spoon tree, and being an artist, she created from that…


We can’t grow spoons, she said, but wouldn’t it be great if we could as we’re always running out of spoons before running out of day…

I’ve so adapted to this that I see my day in small parts. For me, I achieve the most early when my steroids kick in, then I need sleep, or at least a very big rest. If I’m lucky, I get a little burst later, once I’ve come around, to watch TV or something relaxing.

But our days are much longer than that, and if we really look at it, we can feel very disheartened by what we actually achieve in all those hours.

I try not to analyse too much, try not to look at the negatives, but she’s right. We always, always, always, run out of spoons before running out of hours in the day.

For me, it’s become normal life. I live my days enjoying those limited spoons, then laying here mindless letting the TV wash over me, or dozing whilst listening to an audio book.

I brighten those spoonless hours with candles, a log fire and fairy lights in the winter time, creating a relaxing, peaceful ambience to raise a smile. And in those long nights of insomnia, I look at the stars through my window.

I actually find it more disheartening in the summer months, because I can’t sustain through the longer daylight hours, so I feel as though I’m missing out. All those evenings I’d love to sit in the hot tub or beside a fire-pit, and I’m asleep, zapped, can seem wasteful. But on the other hand, I fill my spoon hours with fresh air, wheeling along the canal or at a nearby park or nature reserve. Then dozing outside in the shade.

It would be amazing if we could grow spoons, just like this tree. But we can use the little amount of spoons we have to enjoy life! Then rest surrounded by things that make us smile 😄

We live a different life, but that doesn’t diminish our time here. We can enjoy life, spoon by precious spoon…

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Pleased as punch 😄

I feel so humbled when I receive letters or comments from others. I truly enjoy my pages and blogs, so it’s wonderful when others are lifted by my ramblings.

Recently I had a conversation with an online friend and it touched her to write about it in her own blog. Perhaps you’d like to read it…

I really am delighted when I hear that I’ve touched someone else with a difficult journey x

Long may my ramblings have this effect…

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Paying the price…

I’m struggling this afternoon… My pain levels have hit the roof & I’m totally and utterly zapped! Fever has hit big time and the flu-like feeling is extreme!!!

But we’ve had an amazing time here, memories I will look back on forever 💭

I could choose to stay in bed. It’s the easiest option as my pain is lower and I don’t experience the horrible down to the bone flu-like symptoms as badly.

But how could I mentally survive!

I want my boys and I to look back at our life together with a big smile 😄

Yes, it’s absolutely horrible feeling like this, and I still have to drive us home tomorrow…

But when I’m home, and confined to my bed recovering, I’ll sit looking at the photos 📷, and once I feel a little better, I know it’ll have been worth it 👍

Life to me is trying to live it, despite the illness and disabilities…

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Learning lessons…

You’d think after all these years I’d truly know how to keep positive, but every year I end up in a funk at this time of year, stuck inside due to the cold weather – it’s just too darn painful!

But this break is teaching me that I really do need to get out in the fresh air. Just a short time spent beside the sea this morning has really made my day perfect!

So lesson learnt, when we get back, I’m continuing to get out as often as I can. Wrapped up in all my joint supports and warm clothes should help, and what I lose in pain, I’ll gain in mental health I’m sure.

Canal wheels here I come…

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It’s seven in the morning, and I’m laying here in our hotel room, just appreciating what is.

I slept badly, I frequently do in hotels, but it gave me a chance to wander around Facebook. After all, I did dose for quite a while on and off yesterday afternoon, once we arrived.

The sun rising is casting an orange glow through the window, and I can hear the seagulls cawing outside. From this seating point, I can’t see the ocean, but I know it’s there, I can almost smell it.

My boys are peacefully sleeping, the sounds of their regular deep breaths are filling the room, and Rolo, my assistance dog, is laying on the pillow next to me, sated after his breakfast.

It’ll be time to spoil the peace and wake everyone soon, so we can get to breakfast. But for now, I’m soaking up the peace…

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This IS me!

It’s been so long, that I can barely remember feeling well. I was diagnosed in my early 30’s but I’ve had symptoms since my teens, and experienced a few mis-diagnosis along the way. My boys have no memory at all of me being able to walk, run, play, be a mum, and my ex-husband saw me decline through the years too, and remembers little of the ‘old’ me.

When I first became really sick, I don’t count the years in my youth, I tried absolutely everything to get better. I wanted me back!!! Every new med offered I grasped with hope, every new avenue to peruse, I followed with everything I had. I tried diets, supplements and alternative health therapies too, grasping each one with the hope of relief.

I became a sick person, I became my disease. I searched the Internet, chatted on forums and FB groups, read every book I could find. Darn, even my music choices were illness related! I just wanted to be me again…

But all that was really happening was I became self-absorbed in a cure, or just to feel a little better.

Yes, things have helped, my medical combo of high dose biologic, mixed with high dose steroids and my opiates, have given me a little energy. My diet has helped alleviate some of the symptoms too, and I’d be lost without reflexology and reiki, and my handful of supplements each day. But it was an obsession finding them. A huge desire to get well soon.

It’s taken years and years of living like this, and looking into myself frequently to finally find acceptance of how I am, who I am.

Yes I can no-longer do things, many, many things – after all I’m a powerchair user now.

Yes I feel dreadful with fatigue, insomnia and fever everyday, but I also have good parts of the day too sometimes, where I achieve things.

It was being told that there was no miracle, that only a very very risky stem cell transplant,had any hope of helping, that I snapped out of it.

Was I so fixed on finding a cure that I’d risk my life so blatantly??? Yes I’m already reducing my life with the meds and the risk of an attack on organs, but to go into hospital for a month, knowing my chance of dying there was 1 in 14??!!??

Yes I was sick, but could I live with it???

My answer came from my eldest, he was 11 at the time. We were frequently sat around, my now ex-husband and me, discussing the odds, and my eldest joined in. With one sentence he changed my whole perspective. “I’d rather have a sick mum, than no mum”.

It was like a lightening bolt. I was sick and disabled, but I could try to live.

So here I am, a few years later, grasping at life with two hands.

It’s a simple life, but I appreciate every moment. A cozy fire on a chilly day. Sitting beside the sea in my wheelchair watching my boys explore. Taking lots of photos to dot around the house, memories are precious. Watching the stars and moon on those long nights of insomnia. Lighting a candle. Picking flowers on our wanders on the canal. Those little things really make me smile, and realise that it’s the little things that make life, not the big fancy holidays, the exciting things. Just the simplicity of doing things that make me and my boys happy and contented.

I don’t know how long I have left, but my prof, after refusing the stem cell treatment, made it quite clear that it would be a much shorter time. But I’m enjoying every minute, and not just those when I do have energy, the bad times too.

A funny film can distract a little, a chat on FB can lift the mood, watching my boys is always a mood changer, or just simply watching the birds feed through the window, from my many feeders dotted around outside.

And you know what??? I am me! I might be a different me from before, but this new me is pretty awesome!

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Spoonie rest…

Pill time, that’s the first plan… Taken from my bed.

Then it’s rest time, lots of resting, until the meds kick in…

Tea time, my next need, so my youngest supplies 👍

Then it’s rest time, still waiting to get movement to my legs…

Feed the dog & let the hens and ducks out, with the help of my youngest.

Then it’s rest time, on the sofa, my legs don’t want to function.

Chore time, set off the laundry, so my carer can get it dry.

Then it’s rest time, lots of rest time, that’s just how my day goes.

Shower time, dreaded shower time, but it gives my joints relief.

Then it’s rest time, major rest time, those showers are a killer!

Should I wear clothes, nah, just pj’s, after all I’m not going out.

Then it’s rest time, more rest time, every little thing needs rest.

My social time is chatting with my carer, whilst she does all my chores.

Then it’s nap time, afternoon nap time, so I can be awake for my boys.

Home from school now, come my boys now, the day has passed in a flash!

Whilst I rest here, watching films now, together we rest.

Dinner time, thanks to my eldest, or my carers cooking skills.

Then it’s bed time, cozy bed time, for insomnia time I guess.

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Today’s ramblings come to you from…

My bed… But not for long!

I had one of those nights where insomnia struck, then when I did finally sleep, I crashed & over-slept 💤

But then again, it’s just me and the boys and a day of travelling ahead, and us Spoonies can’t be rushed! We’ll get there when we get there…

So my bed it is for a little while, until the meds kick in & I’m more awake. My youngest keeps supplying tea 👍. My little star ⭐️, so I can surface at my own pace…

Then I’ll throw the rest of our things into bags & my boys will load the car, then away we go!!! Cruise control & hand controls will save the day 😉, plus my rather nifty ramp to load the powerchair 👍

Scarborough here we come…

My next ramblings will come from beside the sea 👍👍👍. It might be cold here, but if it stays dry, we’ll be fine 😉. Warm coats = exploring the beach, whilst I sit on the prom & take photos 📷

Until then…

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