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  • Jacqueline Le Sueur

Just Six Weeks Disabled : S - 3 | The overwhelming impact on mental health of the loss of choice

Updated: Jan 29, 2020

Surgery minus three : S - 3

I was told I needed this surgery 7.5 years ago. Compared to all the other times I’ve been sliced and diced it’s pretty simple really - a metacarpal phalange fusion of my left big toe. Once the gasman has knocked me out it should take the surgeon about an hour to perform his magic with his scalpel, saw and stitches plus a couple of screws and maybe a metal plate. A blink of an eye compared to the hours I’ve been under the operating theatre spotlight in the past. If that’s the case why am I so daunted? Why am I so scared? Why every day for the past two weeks have I woken with the resolve to cancel surgery? I haven’t cancelled it because the minute I put weight on my left forefoot the pain in my toe screams so loudly I’m reminded in no uncertain terms that putting off my time under the knife is simply not an option any more.

Thanks to being sporty all my life and also possibly due to a familial history of arthritis the joint at the base of my big toe is, to use my surgeon's 'medical' term, knackered. There are no joint surfaces left, there are lots of bony growths called osteophytes that have made their home around the bone ends and just to add a little bit extra into the mix there’s a fragment of bone floating free. Looking at the X-rays and scans it is little wonder the joint barely moves nor that it causes me pain that is eye-watering at times. So in 72 hours from now I’ll just have arrived at the hospital in Exeter and will be going through all the rigmarole that’s happens before you’re sent off to la la land for a while only to awake different. In my case I will awake disabled. I would not have thought about it like this however this is what the foot specialist I saw in London said to me. For the 6 weeks of recovery after surgery I should think of myself as disabled ... because I will be.

Nonsense, I thought. People have said to me in the past that I’m already disabled because of the limitations my prosthetic mesh abdominal wall puts on my life. I can’t and won’t see it that way as I focus on what I can still do not on what I no longer can. However, the surgeon's words prompted me to look up the definition of disabled:

‘A person who has a physical or mental impairment that substantially limits one or more major life activities.’

Right, so how does that apply to me for 6 weeks from October 18, 2019?

Well, I’ll have my foot in a cast and I cannot put any weight through the front of my foot. I can wear a funny sandal with a big block under the heel and use crutches to weight bear through that heel in order to go to the loo, get a cuppa, microwave dinner but that’s it. Ideally the first two weeks my foot should be elevated higher than my heart to really limit swelling and after the cast has been removed so the stitches can be taken out at the 2 week mark it will be back in the cast and me on the sofa all day or at my desk for limited periods with my foot elevated for the next 4 weeks. It’s then cast off and x-ray time. If I’ve been a very good girl and followed the doc's advice the two bones should have fused together and I’ll be able to walk again without crutches. Little distances but, yippee! And once I feel I can do an emergency stop safely I’ll be able to drive again. This could be at 6 weeks post-op or it might take another two weeks before I can do that. Hopefully I’ll be cycling again 1.5 months after the plaster comes off and I’ll hopefully, maybe, be able to ski again by my birthday towards the end of February. If all goes well. Fingers crossed.

So why am I scared? What’s the big deal? The big deal is I live alone and work alone from home. I have very supportive friends here and friends all over the world but face to face human contact is limited. Loneliness affects my mental health enormously and has done for the best part of two decades. I take a hold of it by jumping in my car - living in a rural area driving is essential - and going into the nearest market town to buy some fresh veg every day or to go for a coffee so I can sit in the hub bub of chatter. I also jump on my bike and go for a ride getting my company from the countryside, listening to the birds or the sheep bleat or the cows moo. Or I go for a walk around the village where I always bump into someone who is happy have a chat. And on the days I don’t go out in the car or on my bike or for a walk I can chat to my neighbour over the garden fence. All of this requires going out. Leaving the house. And here I am facing 6 weeks of not being able to do just that. Don’t get me wrong, I love my home. Very much. However, I am daunted by not being able to leave it for 6 weeks other than a trip to the hospital to get my stitches out.

It’ll be a bit of a struggle to shower but I’ve worked out how to do that - thankfully I rent a bungalow set up for the elderly so after 4.5 years the grab rails on the wall by the shower will finally be put to good use. I’ve changed my diet from carnivore to vegetarian so I can still cook fresh food but do it quicker. I’ve even started using pre-sliced veg and buying my grains ready-cooked in a pouch. Who ever thought the ex-chef would do that. I have bought wool so I can knit once I can sit up on the sofa and a subscription to an audio book service for when I can't. The bedroom has been freshly painted so it’s all bright and cheery and I’ve ventured into the quagmire that is online food shopping. And last but most definitely not least I have friends who will be popping in to say hi and calling in over the internet and one who even calls on my landline.

Which all beggars the questions ...

Why am I so daunted? Why am I so scared?

I worry not a jot about surgery nor any of the side effects such as embolism, permanent nerve damage and worse. I’ve had enough surgery to know myself well enough. If I trust my surgeon, which I do and I see the need, which I do now, surgery does not faze me.

So what does?

I have been pondering this a lot, too. Is it loneliness? Of course. I know the effect this has on my mental health but I have taken responsibility for that and have proactively put all I can in place to deal with it by having things to do by myself (including the discipline of writing this blog) and lovely friends that will call and say hi. I can do no more. So what is it?

It is not being able to leave the house. It is not being able to exercise. It is not being able to stand and go wherever I choose, whenever I choose.

It is my loss of choice forced on me because I can't use my left foot.

Hmmmmm ... so, I have pondered this at length. I’ve got lots of things I can’t do anymore as a result of my abdominal surgeries and the extensive prosthetic mesh that now substitutes for my abdominal wall, this is true. But those surgeries saved my life. The mesh gives me incredible mobility still. But this surgery is different somehow. For a start this is still elective surgery. No matter how much it hurts I’m not going to pop my clogs if I don’t have it done. My foot, ankle, knee hip and back will get progressively more painful and my ability to walk will further reduce but I’ll still be breathing. That’s one aspect. However I have come to the conclusion it is the limitation placed on my liberty that is really doing my head in.

I will be disabled like this for 6 weeks. Just 6 weeks. For many this, and far worse, is their life. Every single day.

I am so grateful to be alive. Every morning for the past twenty years I open my bedroom curtains and say,

“Good morning world. It’s a brand new day.”

I give thanks every day for everything I do. What I haven’t realised until now is that I’m also giving thanks for having the choice to do so many things. And for 6 weeks that choice is being taken away. Just 6 weeks.

I have decided to journal this journey as a means of reflection. Of a way of charting my physical state and also my mental one. How will I cope with this enforced isolation? I can guess I’ll cope fairly well with the pain, but will I? How will I deal with the boredom when my usual escape on my bicycle is not an option? How well will I cope with the inevitable loneliness? How well will I fare being deprived of my physical liberty?

I am hoping I will gain a greater insight into myself. I do understand the prison of the mind but I do not really understand the prison of the body at all because I refuse to be restrained by mine. Without a choice, if only for six weeks, I hope to understand better, even if only a little bit, how hard it is to live within four walls as a result of physical limitation. And here and now I acknowledge there is a life far more limiting; that when you are so debilitated you cannot leave your bed or you become trapped in your body as a result of Locked In Syndrome or conditions like Motor Neurone Disease. It is beyond my ken to imagine life like this. My six weeks here in my house is trivial by comparison, of this there is no doubt. However, it is one I am facing, and as ridiculous as it may sound it scares me, it really does.

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