I hope you’re all still there…

It’s been ages since I last posted. Last time I was rejoicing at being able to walk again and how much difference it had made to my life.

Last week I met with Mr Khan, my consultant surgeon. He asked the usual questions and then announced, completely unprovoked, that he felt that it was maybe time for me to start running – if I wanted to.

IF. I WANTED. TO.

I stayed very calm, thanked him, and then, on the way to X-Ray, I did a Happy Dance in the lift.

Since then I’ve restarted my running. I’m following the 5K program designed by Jeff Galloway. His training plans have worked so well for me in the past, allowing me to train up to a good half marathon pace, so I trust them. It’s slow going, but after a week I’m already up to a mile and a half. It sounds nothing when compared to the 17 miles  I used to be able to run, but it’s a mile and a half  more than I could run last week!

I don’t have any ambitions, other than to be able to run 3 miles. I’ve promised to take it steady and I’m running on the treadmill so that a) I’m running on cushioned and even ground and b) if I get into difficulties, I’m only at the end of the garden!

Honestly, just being able to run again is just wonderful!

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Progress Report! There is Progress!!

It’s been a very long time since I last reported progress, so I felt it was time to do so again!

Since I last posted I’ve had, and been discharged from, physiotherapy, I’ve been up to Edinburgh and seen my surgeon and I’ve started back to work. I’m now at 14 weeks post-op and the change in me is quite astonishing really.

I can now walk for a very long way without any problems, unless you count losing my sock and shoe in a muddy puddle. My hip/groin/leg pain has 99% gone. I still get a slight nagging right at the top of my left thigh, but nothing in comparison to the searing pain I used to get pre-surgery. I have a long and well-healing scar from my bra strap to my knickers – a reminder of where I’ve been, like a sticker you put on your car when you’ve been to Blackpool! I still have some ache at the site of surgery and I’m still a bit stiff, so doing ordinary things like getting dressed is still a contortionist’s dream. If I get down on the floor, I can’t get up unless I’m hanging onto a piece of furniture. Sadly I didn’t discover that until I was already down and then had to crawl to the nearest chair! You live and learn.

The surgeon was really pleased with my progress. He was happy for me to start doing more than walking and suggested pilates, swimming and cycling. But not running. Not yet. Until my bones have fused with the help of the rods and screws, and aren’t likely to be jarred by anything high impact, I can’t even think about running. I try not to, anyway.

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These are the bits of tin holding me together!

I started phasing myself back into work at week 6 post-surgery with an hour a day for a week, then two hours daily for the next week, then four and then, finally, six hours. It meant I could gradually get used to driving and being at work again. A few weeks later I still get really tired by the end of the day, especially ones which have seen me either spend too much time in front of the computer or too much time standing with customers.

Thanks to the advice of a friend, I was put in touch with Access to Work,  which is run by the UK’s DWP and is aimed at keeping self-employed people in work when they are struggling with a disability. Although I’m post surgery, my recovery will take a year and having some guidance about how I should be sitting, lifting, standing etc. is really important. Last week I was visited by an assessor and I’m waiting on the results of his report. I only wish I’d known about Access to Work before my op.

The biggest change has been in how I am feeling. I no longer hurt, so I look better. There is no pain etched on my face, where it used to be. We went for a weekend away recently and I could again go out for walks and appreciate the countryside from the pathways, instead of the car or the mobility scooter. I can even walk to the pub! And, because I’m mobile, I’m starting to lose weight.

It’s these small things, ordinary things, that are now so precious to me. Being able to walk hand in hand with my husband, being able to walk the dog, being about to do the shopping – these things were either an effort or impossible before.

My grey world has at last become far more colourful.

The Bionic Woman

I grew up in the 1970s, watching such TV delights as Starsky and Hutch, Charlie’s Angels, The Six Million Dollar Man and its spin off The Bionic Woman. How little did I know, as a skinny ginger-haired kid, that I would too be bionic!

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I closed my gallery for Christmas on Christmas Eve and I was, by then, totally exhausted. I couldn’t stand for any length of time, and I couldn’t walk at all without pain.  I was hoping for a surgery appointment in the Christmas holidays, but with no date appearing,  I rang the Admissions Clerk a couple of times and explained that, as a self-employed person, I needed a date and an early one at that! Having been given (and then turned down) a date previously which fell in the week before Christmas, my by far busiest week of the year, I didn’t want to keep my gallery closed any longer than necessary. To their credit the date came through the fairly quickly after that.

I won’t bore you with the details, but watching this video explains the surgery I had.

http://www.spine-health.com/video/spine-fusion-surgery-video#vm_A_569b6008

Short story – I am now bionic. Fact.

I don’t remember much of the aftermath; I went from recovery to the high dependency unit thanks to low blood pressure. I do remember trying to focus on details of the room, which changed as more and more lights seemed to be put on around me, but I don’t remember much other than the constant nurse checks. Once my BP increased everyone seemed to relax!

I came out of hospital four days after being admitted. All I had to do was prove that I could walk to the toilet, go to the toilet and navigate the stairs. It was a little earlier than I’d anticipated,  my husband had even booked work for that day, but the junior doctors seemed happy.

People now seem split into two groups on discovering that I’ve had surgery; half think I should be in bed all of the time and the rest think that’s you fixed,  why aren’t you in the pub?

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Truth is, my recovery consists of walking, sitting and lying down. I am currently paying the price for over-estimating how much I can comfortably walk. I thought it was more, my body says no! So, without pain afterwards, I can probably walk a third of a mile without issue. I can sit down for up to an hour and a half in total, yes in total – in a day! The rest of the time I’m lying down. I might be doing abdominal exercises, I might be resting on my side, I might be posting on Facebook or doing my blog. I might be sewing, doing my diary or watching TV, but all of those things I can do lying down! What will change over the next few weeks is how much more walking and sitting I can manage.

Some things I’m not allowed to do at all, like anything involving bending. I can’t put on my shoes. I can’t hoover. I certainly can’t load and unload the washing machine, make a bed or put my socks away in the bottom drawer. I can’t drive. I can’t catch a bus. I can’t put the dog’s lead on, unless I can coax the dog to jump to a surface at my hip height!

This will all improve and by 8 weeks I should start physio again, appointments permitting. I should be starting back to work at that point too. By then I should be able to walk three miles. That’s a lot of shoulds.

My only worry at the moment is that besides the back pain, which is understandable, I also have nerve pain on my outer lower left leg. I can’t bear to have it touched, or for the bed clothes to even brush it. If I wear close fitting leggings or long socks, it’s bearable – but it’s there. It feels as if a layer of skin is missing and the nerves are exposed. I’ve got the same thing to a lesser degree to either side of the surgery site. I’m hoping that this is temporary. In any case it’s better than I have had and I’m grateful for that.

Does anyone else have experience of spinal fusion?

 

 

 

 

 

 

 

Catching Up

My updates have become sparse of late; I’m busy at work and tired when I get home and, honestly, posting updates here, when I’ve got little to say about running, is sometimes a step too far. And I apologise for that.

That makes it sound as if I’m being negative about everything and I’m not, not at all. I’m so annoyingly positive I think I’m starting to get to my husband, who is naturally not quite as positive. I look past the surgery to the days when I can walk without pain, really walk – up hills, over dales, along all the forest walks I so miss. I’m now waiting for the letter to tell me when my surgery is due. I need to know.

Hubbie says I’m to make sure my will is up to date. I’m sure that’s from a practical point of view and not that he’s envisaging death on the operating table. Pretty sure any way. It’s something we’ve talked about for a while because provisions we’d made for our children when we first made a will are no longer necessary. I’m sure my son, now 24, knows exactly who he wants to live with and it’s definitely not his dad! I’ll do my will, if only to give hubbie one less thing to worry about.

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We rarely think, when injured or ill, how that affects the people around us. I’ve gone from being a really fit 50 year old to a disabled 52 year old. And, as you know, it happened BANG, like that. Hubbie used to ferry me around from race to race, standing at the start and the finish to watch me go and, eventually, come back. He didn’t get the whole fitness thing; being able to lift a Scotch Pie from the fridge is exercise enough for a working man. I did get him running at one point – I think he was missing me when I was training as much and decided that if I was out, he’d come with me. He was good too. He did two races and, despite declaring his impending death as we slogged towards the finish line, he came close to running a sub 30 minute 5k.

When he was brave enough to admit that he wasn’t enjoying the training, I put away my whistle and clipboard and he accompanied me on his bike, becoming my Semi Silent Coach, who delighted in cycling behind me and “just watching”. It was like being chased in slow motion by Benny Hill on a bike.

Now he’s the guy who helps lift my mobility scooter in and out of the car, tries to park as close to the shop we need as possible, watches me grimace when the pain catches me out and worries about what could go wrong in a few weeks. I love him for all of those things. And I worry only about him and how he’ll cope.

This week I received my Blue Badge, the accolade of disability. I have been determined, under strict criteria, impaired enough to warrant an award. I carry my Blue Badge with me everywhere, waving it at imaginary wardens. It will help and I am determined not to abuse it, as I see others do. I shall not abandon my car anywhere and plonk the badge on display before I leave declaring “I’m allowed, I’m disabled!” I will not park all day in disabled spaces. In my world, that’s just taking the piss. I will use my badge with discretion and not so as to annoy the hell out of everyone around me.

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This weekend I’m setting up a new exhibition at the gallery. I’ve suddenly become all sensible and decided that, in order to set it up without hurting myself, I’ll close early and take my time. I’ve even turned down the offer of lunch so that I don’t put myself under additional pressure. I am learning to cope with this, just in time for it all to (hopefully) end! Typical, isn’t it?

We learn from the things that affect us, no matter how slowly. 

 

Light at the end of a very long tunnel

Some time in January 2017 I will be sporting a very long scar. On my last visit to Western General in Edinburgh Mr Khan, the neurosurgeon I’ve been seeing, asked how things had been. When I told him a little better for a short time, after the nerve block injection, and now worse than ever he said “Right, I’m booking you in for surgery”.

He then went through a large list of all the things that could go wrong. And gave me three sheets of double sided paper also listing them, in case I didn’t take him seriously.

For a start the scar will start somewhere at the base of my neck and go all the way down to the base of my spine, unless he’s also a fisherman – in which case it’ll be a small and inconspicuous scar. I suspect the truth is somewhere in between. When it’s healed, I’m thinking of getting a zip tattooed along either side of it.

The operation, if successful, could reduce my nerve pain by up to 85%, maybe more. My back pain is another matter and that might only improve by 50%. As I’ve had back pain since the age of 16, when it first declared itself a potential problem, I think a 50% reduction in that pain is fantastic! In any case, I’m happy with those figures. It’s the nerve pain, caused by my spine damaging the spinal cord, that is the most severe.

And, honestly, if it wasn’t for the drugs I’m taking I wouldn’t be able to stand up, never mind walk at the moment. I’m now on 1800mg of Gabapentin a day as well as 200mg of Celebrix. It’s no longer enough anymore and this week I will be asking my doctor if I can increase it again. Judging by how often I’m needing to do this, the damage to the nerves supplying my left leg especially is pretty extensive; at times I can no longer feel my leg and most of the time I have pins and needles. I’m also now getting a ghosting sensation, making me think that something is touching me. It’s all very strange and very painful. By evening I’m exhausted.

I put up with more than I probably should, largely because, as I said before, I’ve had back problems since I passed out in my mother’s arms at the age of 16. I’d been making my brothers’ beds (other than to help Mom, I can’t think why!) and turned quickly. I didn’t notice the pain at first, but by night I was in real trouble and the next morning, after descending the stairs, I just collapsed. I can distinctly remember seeing everything go black and tell my Mom I was about to pass out, to which she replied “No you’re not!” Sorry Mom, I did – leaving you to catch me!

I’ve recently been back up to Edinburgh to have a ‘long back x-ray’. Apparently this can’t be done in all hospitals, they have to have a specific bit of kit, so I drove two hours up the road to a lovely swanky new hospital near Dalkeith to get it done. As ever the staff were amazing. The letter inviting me up actually arrived when I was on holiday and I should have guessed from its tone how laid back this particular hospital seems to be!

I was really concerned, on opening the letter, to see that I’d missed the appointment, so I rang the lady who had sent it. “Oh that’s fine Julie, don’t worry about it – when can you come in? This Friday? Next Monday? You choose!” I’m sorry? I get to choose my own appointment? “Friday’s are bad for me,” I said, warming to the vibe, “How about Tuesday?” “Sure, ” she said “That’s fine – just turn up. The receptionist will know nothing about you, but that’s no problem.” Okay. Hmmm.

She was right though. The receptionist just pointed me in the direction of the X-Ray department, where someone met me and took me through. Within ten minutes I was out and x-rayed! I even got to see my ‘long back x-ray’! I could clearly see the curve of my spine going from right to left – the undoubted cause of all this – and the two vertebrae at odd angles, with no disc in between. I stopped short of a selfie with my spine, but only just!

In a couple of weeks I’m going into Dumfries for my second MRI scan. And then I’m just waiting for my surgery date.

Mr Khan had been most apologetic when talking about the timescale. “It’s going to be a long wait, I’m afraid!” Expecting another six months of hanging about, I don’t think he was ready for our reaction when he said “Yes, the full twelve weeks!”

Is that all? I explained that, as a sole trader, I was needing have the gallery open up until Christmas anyway, but after that I was all his. So I’ll be booked in for major surgery anytime after Christmas Day. Boxing Day even.

I’m still getting emails about running stuff, which I usually delete straightaway but haven’t yet had the heart to unsubscribe from. I should really. I can’t see me getting back into running the way I was before all this suddenly happened. I certainly can’t see me running half marathons, never mind the full ones I intended to run once I’d retired and had more time for training. I think I’ll be exceptionally lucky to build myself back up to the standard I was running at. I’m not discounting being a runner again, but I’m also not willing it so. I have to prepare that I may have to content myself with something less damaging to my back, perhaps cycling. It’s sad, but at least I know I was once a pretty reasonable runner, capable of a sub 30 minute 5k, a sub 60 minute 10k and a 2.22 Great North Run. Some runners half of my age won’t be able to claim that! I really should stop those emails…

I’m keeping positive; I have to stay positive – I can’t afford to let the mask slip. When asked, I always reply “I’m OK” or “I’m fine”. I’m going out less, I know that. I can’t really do nights out on the mobility scooter, and pub crawls are tough going when you can’t walk far! I have to plan every invitation to the nth degree, so a lot of the time I just don’t go. I hate asking Grant to push me about in the wheelchair and, after a few pints, he forgets the need to use kerb drops and races me across the road in front of oncoming traffic. I really didn’t think I was annoying him that much!

My Drug Alarm has just gone off. It’s time for my next dose. I make light of it when the alarm goes off in public; “Ooo, time for my narcotics, pass me the spliff!” It’s not a case of taking when I need them, because when I need them is usually too late. These pills have to be taken as directed – to maintain my haze, man.

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Attending Gym

I maintain three blogs; this one (obviously), an arty one for my business and a motoring one for the club of which I’m secretary. It takes a lot of time of which, generally speaking, I don’t have much! I’m working my way through them this morning.

However,  here I am! And I bring with me tidings of reasonable cheeriness.

Since I last posted I have been attending Gym. I tried to approach it in a similar way as I used to my running, but I seem to have less inclination towards Gym as I did running through woods in the early evening light. The urge to Gym isn’t as strong. It’s more of a necessity than a dedication. With maybe a bit of determination thrown in.

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Yes, that’s me, smiling as I cycle away. Believe that and you’ll believe anything.

On average I go to the gym three times a week. I walk, I bike and I swim. In that order too. I don’t know why, it just became ‘Routine’.

I started walking 1km on the treadmill at a slowish speed and now I can walk 1.25km at a less slow speed. Well, let me be honest here. I can walk 0.5 km, then I painfully limp the remainder. I’m just building up the amount of pain I can endure.

Cycling has never been an issue. I could stationary cycle 10km even when I was at my most injured; these days I’m following a walk with a cycle and sticking to 5km so that I don’t break myself. I’d hate for that to happen. Again.

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Then, with wanton abandon, I haul my sorry ass to the pool. I love swimming, really love it, but I really hate getting changed. I’m longing for the day when I can step into a changing room like Mr Benn and, as if by magic,  emerge ready for the pool and then ready for home, without need for a soggy towel or a squirt of talcum powder.

Multimillionaire Duncan Bannatyne can rest easy; I’ve signed up for a year of Gym. The way I’m going, I can’t see me running through the woods any time soon!