One of our members of the FeelYourFeet community is currently living with a suspected Charcot foot.

‘Charcot’ is a condition that affects the bones, joints and soft tissues of the foot and ankle and it often starts with inflammation or redness. It is progressive and results in bone destruction and deformity, which then leaves the foot at risk of ulceration.

It is named after Jean-Martin Charcot – an influential neurologist in the 1800’s. He was known as the father of neurology and his name is associated with a number of medical conditions. He first described the condition 140 years ago and despite this passage of time it is still poorly understood, with little consensus on evaluation or management.

As it normally starts with a warm, swollen foot and ankle it is often difficult to make a definite diagnosis as it can be easily confused with the signs and symptoms of infection.

And this is where the frustration begins for our community member.

In his own words this is his story;

I’ve been on annual leave today so have spent some time thinking what it is that is frustrating me, I’ve cried and got angry and then I thought it through some more.  The biggest problem is that I am not in control.

I am being done to – not done with.

I was in a serious car accident earlier in the year, but I knew I would recover, I could drive and people who worked with me could see I was getting better. But with this problem there is no way of seeing it, it is completely invisible.

What is this? It is probable, possible, may be, could be Charcot.  So why all the uncertain descriptive words and statements? Well that’s because no-one knows what it actually is. There is no wound, but I have neuropathy, a good blood supply and a difference in the temperature of my two feet, which pretty much meets the criteria for Charcot.

However, through all of this no-one seems to be taking into consideration that I was only recently involved in a fairly life altering road traffic accident in which several limbs were broken, this leg being one of them.  So it’s healing slowly, I’ve massive muscle wastage and generally I’m not walking as I did.  So could the temperature difference be down to that? The answer is yes, so here we have uncertainty but healthcare professionals don’t like that and so air on the side of caution.  I don’t blame them but what frustrates me is there is no real test for Charcot. I went in to hospital with supposed infection, was given antibiotics which cleared it, but was told it was Charcot.

Basic Charcot treatment can take 10 months and there is no guarantee it will heal. No-one has said to me  “Can you afford to stop everything for 3 months?” No-one has spoken to me about fitting my treatment around my life and when I said “just amputate it” they looked at me like I was mad.  However I’m fairly certain if it was amputated now, in 10 months I’d be healed BUT no-one has even thought to offer me options or a choice of things to do.

You either have to have a melt-down or be in crisis before anyone opens the box of options for you.

So I’m struggling. I won’t let this stop my life but I just don’t feel like I have the energy to fight the system any longer. I keep getting things going through my head, and the struggle of EVERYTHING builds up so little things seem like a mountain to climb.  The accident, the solicitor, returning to work and coping while still very broken, the whole process of using holidays to cover the days where I feel like death.

This not to mention trying to cope with the medical side of things. I know that keeping tight control at these times is probably more important than when I’m generally well. If I don’t fuel my engine it can’t power me through the traffic I am currently trying to navigate through.  That in itself is tough.

No-one can give me the answers I need, they can’t even tell me what’s wrong, they say I have no infection because I have no injury, no open wound and my infection markers are normal, yet they give me antibiotics and the redness goes away and right now the foot looks as normal as a foot can be when it’s attached to your leg via a metal rod.

The frustration I feel the most is the lack of inclusiveness in the system. I’m the most important part of the whole situation, ME. However, the system is telling me that I need to sit and do nothing and I will get better. If I don’t then it will be entirely my own fault.

There is no consideration for me and my life, no consideration of what’s gone before (4.5 months fighting to get back on my feet and being a prisoner in my own home) no consideration what sitting on my backside for months on end would do to my head and my whole mental state.

Then there is a complete and utter lack of any kind of urgency and how I can self-care for this foot, (other than sitting on my backside).

The surgeon will see me in a month and then he may discuss ‘the drip’ (a drug that can use) or he may not – it’s down to him what he thinks.

We are back to doing to me and not doing with me.

If living with two feet means at any point in the future, I have this big black worry over my head – boom you have Charcot, I would rather have it amputated now. Deep down I know that losing it is really the last thing I want to do, after all I have had it all my life and its served me well, but if life with it means not being able to walk the dogs and not being able to lead MY life then it has got to go.

Life has to be lived and enjoyed, so why can’t there be care packages, plans that facilitate me being able to enjoy life no matter what the options.

Rule nothing out – don’t do to me – do with me – take my whole life into consideration not just the bit you see in front of you in a consulting room.

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