Monthly Archives: June 2016

Wednesday

My spinal operation date remains elusive.
I was fixating on july 15th, and then the 18th, but both aren’t now available.

My back crunches audibly whenever I move now – usually making my legs jerk at the same time.

Thanks to Mary for her visit, to Nev for his time, to Cherie for her charming company, and of course to Iceland for putting England out of its misery.

I have faith in the UK and Ireland now uniting behind Wales in Europe 16… all the way to the lifting of the Cup.

Tuesday

It seems that I’ve been given a diagnosis of moderate depression, tied up with PTSD – that’s Post Traumatic Stress Disorder.

I’m not sure if my occasional flash backs to my crash are real or imagined.
As I recall little of the whole day or the 2 days before, I can’t see how I’d recall the crash.

The images in my head, of me lying on my smashed front, in the road, seem real enough.

Not good.

My spasms haven’t stopped for the last 24 hours.
I now can’t get into bed by myself, or feel confident to push my wheelchair alone, for fear of spasms jerking me out onto the ground.

I’m going so far into reverse in this journey, it’s unbelievable.
Things that only seemed hard a year ago are now near impossible.

Saturday.

So it would seem that one way of surviving in the world I now inhabit, is to be angry, opinionated and bloody minded, or at least to have a default towards those behaviours.

I’ve realised and witnessed these traits in chair users, and have been told countless times of a reluctance to offer assistance to a chair user for fear of rebuke.

I do however completely understand how these traits may develop, post injury, as a way of just managing in a world that seems not to understand – which is also something that I understand – not having understood myself, pre spinal injury and wheelchair !

Do I want to end up that way, though, railing against everything? No, I don’t.
And hopefully I’ve not gone too far down that road, though I know that I have to a degree already, out of situational frustration and ‘ injustice’ ( which readers of this diary may at least be able to forgive me for )

I’ll I think have a greater awareness of self, now that I know what I’m trying to avoid.

On another note, I ended up buying a table and set of chairs today.

It’s a funny thing, buying seats that I know I’ll never be able to sit in or feel myself.

Friday

Today I’m meeting a gentleman that I was briefly introduced to last week.

He had a cycling accident 20 years ago, and has been paralysed from that moment.
We spoke a little, last week, and have exchanged a few messages.

I’m trying, on a daily, minute by minute basis, to be positive about the situation that haunts my thoughts, whether I like it or not.

One message he sent, was this –

Russ, Sorry I was under pressure to go. Have been in chair 19 years and happy to explain why it’s not all shit. Much of it is about understanding your own body, some anger management and general coping strategies. I still have bad days and upsets but the vast majority is good not bad. Happy to have a beer or wine, here, at yours, or in town. Rgds ****

I am hoping that what he tells me will convince me that he’s right. I don’t know whether he has had any of the constant setbacks that I have, but perhaps he has, and has been able to overcome them. All SCI’ s are different – no 2 people/ victims get exactly the same post injury issues.

We’ll see.

The sort of message that is posted on the group forum I’m in.

Obviously I’ve left the identity of the person out.

It’s always very brave, but bloody heartbreaking stuff.

Hi I’m after some advice please folks. I’m a T10 paraplegic and bilateral amputee about 8 months ago I fell out of my chair and managed to snap my sternum in half at the time they decided it was too risky to operate to fix it and that it would probably slowly repair itself. Fast forward 8 months and I had another scan this week which shows the bone hasn’t healed at all. It’s really painful and everything I put weight through my arms eg. Transferring I can feel the 2 pieces of bone move even pushing my chair hurts. They say it needs total rest to give it a chance to heal . I could probably reduce the amount of damage transferring by using a slide board etc but I can’t not push my chair around. Do you think it would be worth asking wheelchair services if I could have an electric chair even if it was for the 4-6 months they predict I shouldn’t be pushing for? Or is it possible to hire one longterm and if so how much and where from. Thanks in advance for any ideas or suggestions ?

Thursday

As hard as I try to stay up, luck kicks me every time.
I have another UTI – surprise, surprise.

I shall nonetheless put up with the extra spasms and carry on… right?

Was good to have arranged a ‘distraction relay’ of great people today.
Thanks to Roy, Dickon, then Alison for the extra mile, plus Glenn and Nick.

Triked 7 miles today, plus another 7 or more yesterday.

Alison, who reads this diary, had some interesting observations for me.
She proposed that the reason why people ( strangers ) in say cafes, might not help me to, say, move chairs out of the way, is that I do apparently ‘ look healthy and capable ‘ despite the chair, something that my friend, Andrea alluded to a while ago.
The fact that I’m not actually either of those things now, is immaterial, once that judgement has been made.
It is of course a compliment to me ( overall ) but not ultimately helpful!

June 22nd.

I can’t say I’ve had the best week of my last 3 years, indeed it included my lowest of low moments, but I do seem to have bounced back to a degree ( with a bit – actually a lot – of help from my friends )

The details would make very grim reading, and I won’t depress myself by reminding myself of them at this time.

I’ve filled my last few days with as much distraction as possible, including driving a fair way to meet up with my school friends Stu and Anne, and Triking as much as possible.

Big thanks to a lot of people for their help past my 3 year anniversary crisis, particularly Dani,Glen, Marta and John, my daughters, Cress, Kev, Pia, Cliff,Cherie, Dan, my brothers, Dan and Mike J.. as well as a lot of messages from a lot of people.

That day weighed very heavily on me indeed, both in the build up to it, as well as its arrival.

I’ve obviously been buoyed by Wales storming through Euro 16, ahead of England, and surprised myself by my enthusiasm for the tournament, having never been even remotely interested in football.
There’s little better than witnessing the discomfort of the English, when Wales are in the driving seat.

I have had to have a rethink about the Meaning of Life, where applicable to me, and then decide how to proceed.

I think I know what the correct choices are, going forward, and I have things to aim for, again.

I have not had any significant calamities in the last few days, which has helped a lot, though the spasms continue as per usual.

I’ve accepted resumption of anti depressants ( slightly reluctantly ) as an aid to reducing the amount of negativity that floats around my consciousness and attacks me from all angles, like a team of invisible Ninjas with loudhailers.

I’d not seem my buddy, Stu, for 15 years or more. Stu had more than bad luck as a kid, and then more as a youth, losing his leg after an accident. He more than bravely fought back and has made a real success of life, against heavy odds.
Now that I am disabled, I understand his pain, then, so much better, as he understands my own, now. The emotional strain of disability doesn’t go away, ever, Stu told me ( not that I ever thought it would ) but victories are still possible, as unlikely as they might seem at the moment.

I look forward to the possibility of easier and better times, though I understand that it’s only my mindset that may have changed, and nothing else.

Whilst at Stu and Anne’s, they mentioned the ornate, silver, antique ice bucket that I’d bought them for their wedding, quite a while ago.
I thought it a good time to confess ( 20 plus years later ) to the truth.
Dani and I had arrived at their wedding reception and seen the large pile of gifts in one corner of the room.
I was carrying the wrapped up wooden salad bowl and serving spoon set.
I spotted the hard to miss antique ice bucket, the buyers of which had been so proud of their own gift that they had not wrapped it, and instead only attached a ‘love from’ label to.

It took a few seconds for me to swap the labels around….

I felt no shame, even upon receiving a gushing letter of thanks a few weeks later, plus numerous references, over the years, to my generosity.

I did wonder ( briefly ) who was thanked for the IKEA salad bowl set, but didn’t waste too much energy on that… as the deed was already done.

If it was you, I’m sorry ..OK!

A message.

I ‘belong’ to a club – all members are SCI

We haven’t as a rule met in person, but we are there for eachother.

It’s one of the plus points of that ‘ social media’ thing…

I got this message. I have met this man, just the once, about 2 1/2 years ago.

Hello Russ I have heard the awful news that your in a bad way at the moment. I just wanted to say that you always cause such a stir because so many people care about you. I cannot go into how your family feel because this is not my place but the people you have come to meet since. I have been bombarded with messages to help you like I’m God?? Wtf do they think I can do?? Anyway our thoughts go out to you and your family and please get better and show people what a clever funny fucker you really are!! Much love x

I was very touched to read it.

As predictable T-0 wasn’t a good day.

The various contributory factors added up to me being in hospital, with surgery planned for the morning.

I pity the nurses, who have to smile through my ever present dark demeanour, as well as to deal with my toilet issues, after 4 days of inability to sort.
My consequent spasms are something to be believed.

Thanks to G,C, M and J for the their time and care.