Chronic Health Conditions: I’m all out of spoons

In recent years the word “Spoonie” has been used to describe someone like me. Someone who has a chronic health condition. For me it’s pain. I live with pain, most of the time I am the boss of it. I manage it so that it doesn’t appear to the outside world that it manages me. Sometimes the mask slips and I have to admit that I just can’t do it anymore and I need to rest up. Today, this week, is one of those times. I’m all out of spoons.

The idea of spoons – you get X number of spoons a day and you have to choose how to “spend” them. For example a shower might take three spoons, a walk to the shops 5, but you might only have 15 spoons a day, how should you use them best? I don’t always think the spoons thing is always helpful to me, like most people with chronic health problems I have good days and bad. I might have five spoons today, but tomorrow I could have 50. And yes, some days if I use too many spoons I won’t have any or many to use the next day. I feel like I’m saying the word spoons a lot here.

Anyway, long story short. I’ve hurt my back a bit, so my pain levels are high. The numbness in my legs and pelvis is distracting, but I’m trying not to worry. On top of that I’ve got a stomach bug. I’m all out of spoons.

Today I managed to sit up in bed long enough to chug down some painkillers. Then it took me two hours to get the energy together to shakily make my way downstairs to keep the dog company. Then I had to find spoons I didn’t have to clean up the little puppy gifts she’d left me, before I grabbed a drink and lay on the sofa watching TV for the afternoon. I know the boys will be home from school and work soon, so I spent my last remaining spoon on a shower so I looked less like hell for them. No more spoons.

I’ve just had a text “what’s for tea?” To which I replied “I’m too wobbly to stand, sorry”. It’s official, I am all out of spoons.

My beautiful son is making his Beavers promise tonight. I really should go and watch him and his proud moment. I will probably make myself go, using the precious spoons I’d squirreled away for tomorrow. The dog remains unwalked for now, but she’s been played with, which was all I could manage.

I’m normally on top of this. I am normally well in control of my spoons but I’m all out. I’m all out of spoons for now and I’m running up a deficit for tomorrow and the day after.

Note – I wrote this last night on my iPad but didn’t have any spoons or energy left to publish it. I didn’t have enough to get me to Beavers to watch Ben make his promise either, so now I feel like a terrible parent. So here it is, my blog post, and now I’m going back to bed.

Why being disabled on holiday can be a real pain

As a slightly less able person (spinal injury, nerve damage, chronic pain), I need to pace myself and rest more often than I would normally. I have adapted my day to day life so that I’m able to manage myself properly, take my medication when I need to, rest and exercise appropriately and generally maximise my wellness. But holidays throw that tried and tested routine out of the window leaving me in more pain, more tired and out of my medication routine.

We are on holiday in North Devon. It’s one of our favourite places to visit and we come back year after year. But from Manchester it’s a minimum 5 hour journey. This time it took 6 hours, but it has taken 8 hours in bad traffic. Sitting in one position for 6-8 hours is bad for anyone, but with my ruined spine it gets very uncomfortable, then very painful and it takes days to recover from.

Once we get there, put me in an unfamiliar bed and I’m gobbling painkillers like they’re smarties. Combine that with a lack of routine, longer than usual walks which are usually on the beach on sand, shale or pebbles which are hard to walk on its all a bit ouchy. At home I can plan my week, if I’ve got an active day then I’ll make sure I’ve got a rest day after it. On holiday every day is an active day.

So what do my holidays look like? My holidays look like car parks. I often have to just sit in the car and rest while my painkillers kick in and the boys race off to do their thing. It makes me a bit sad that I can’t fully participate in holiday activities, but then I can’t always participate in normal life activities either. Stop moaning kid, these are the cards you’ve been dealt. Live with it.

Reading this back it makes me wonder why I bother going on a UK holiday at all. But it’s beautiful here and although I’m half cut on prescription painkillers most of the time, it’s nice to spend time with the boys, to get some sunshine and sea air and to take the boys out of their routine for a while. It’s hard enough being me and living with my limitations, it must be equally hard for them, so they deserve a holiday and a chance to relax and be free from my routine for a week or two.

Disabled on holiday — North Devon: so beautiful, but you can only access this beach via a cliff path.

My all new improved Bucket List

On my 37th birthday, way back in September 2013 I wrote a blog detailing my bucket list. It had been a traumatic year and at times things had been a bit life and death. A little brush with mortality made me evaluate things, boil down my priorities into a to do list. But nearly two years on I’m still here, but how have I got on with my bucket list?

1. To see my son grow up strong, happy and confident
So far, so good. He’s happy and thriving and the glittering star in my existence.
2. To see the Northern Lights
This hasn’t happened, I remain in hope but I think I might have to actually go to Norway rather than just staring balefully out of my bedroom window.
3. To return to Gothenburg, Sweden and enjoy the city where we honeymooned
This hasn’t happened yet either, though it is our 15th Wedding Anniversary this year *coughs and looks at hubs*
4. To get a tattoo
Oh dear, I’m not doing very well here am I? I know what I want and where I want it, but I need to nod from hubs and a dose of bravery. I’d like a white feather to cover a self-harm scar on my hand.
5. To see The Wonder Stuff live
YES! Well no, I’m actually going to see them on Sunday, so barring disaster, that’s one off my list!
6. To get half decent at photography. I love it.
Still dabbling, but occasionally I take a picture which blows my socks off. I need a more advanced fancy-pants camera really.
7. Be a passenger in an Aston Martin DB9 going flat out round the Nurburgring
Still a big dream of mine. I doubt it will happen, being thrown about in a luxury car will probably be the thing which will finally paralyse me.
8. Have a go at some wild swimming
Still looking at it, still trying to pluck up the courage. It just needs an unbearable hot day, a swimming costume and a body of water not filled with shopping trolleys!
9. To go for (another) meal at River Cottage HQ. Yum.
YES! Well sort of. I’m booked to go on an amazing blogcamp at River Cottage this September. So I’m counting that as a yes
10. Spend at least a year living in North Devon
I strongly suspect this will not happen. The small boy is starting school in September and I don’t think I can be too far from my neurosurgeon just in case. It’s not all bad, there are worse places to be than sunny Didsbury.

Would I add anything? Probably.

I’d like to write something, a book or a series of short stories, something that I can hold in my hand and say “I wrote that” and have my family and people I love be proud of me.

I’d like to see my other “bucket list band” Shed Seven – which I will do in December.

I’d like my kitchen ceiling painted. No really, it’s needed to be done for 3 years now, it’s going on my bucket list. If I die and it’s not been painted I’m coming back and haunting someone.

I’d like to not be in chronic pain, but that’s something I can’t change. Maybe I just need to adjust my thinking and see the upsides to being a bit broken.

I’ll keep my thinking cap on and add to this list as I go on. My bucket list is always changing, which is how it should be, because so am I.