Slowing down and reaching out

I have been thinking of starting a blog for over a year now. After being in denial that I was sick, to accepting that I was going to be dealing with this for the rest of my life, so I should try to be as well as possible, finding resources proved difficult. So I thought, why don’t I become a resource? The problem was, I was too exhausted to actually act. The fog is real – and I didn’t even know it was there until it was gone.

People started asking why I was so cheerful – this made me stop and wonder. What was different? The answer – the fog had lifted and I’m pretty sure cheerful is how I used to be.

I can’t even describe the exhaustion now – it was “in my bones”. My limbs felt like lead. Even though I knew they still moved, the mental effort to overcome the “lead” feeling was huge.

Late 2014, the left side of my face started burning. This was the start of a long journey. So many tests and (other) doctors, and throughout it all – uncertainty. Early 2018 I developed the same burning in my left hand. Over the next 12 months the burning would involve all my limbs, and part of my abdomen. Oh, and the face still burns (but I’m used to it now). The thing is, it’s not the burning that gets you – it’s the fatigue. I would have been just fine, if I hadn’t been so exhausted.

I started on intravenous immunoglobulin (IVIg) almost a year ago. About three months in, the fog lifted.

I was forced to slow down, and then I learnt to slow down. I had to learn to manage myself. I’m still learning to look after myself. But now I’m here, to be resource, and hopefully help others through the fog.

I write this as a patient. I happen to also be a doctor. It is a unique perspective. A perspective I was hoping to not experience until I was older. But, alas…

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