Stick days and HNPP – Getting used to a new normal!

I’m out and about and it’s a stick day so Merlin the hare is with me.

I’m still getting used to walking with one of these. I don’t need a cane every day, but after a flare-up this weekend I need a little help with my balance. For those who don’t know, I have something called HNPP or Hereditary Neuropathy with liability to Pressure Palsies. It means my nerves are highly sensitive to pressure, meaning I can have prolonged numbness in my limbs at one end of the scale and extreme pins and needles or pain at the other. It can also affect my ability to walk at times, whether that’s muscle issues or balance.

I was diagnosed a few years back after having symptoms all my life and unfortunately, things have worsened since contracting Covid last summer. The thing I’m most struggling with are periods of fatigue which are wiping me out, but I’m learning to adapt to lessen the impact on my work and family life. On the whole, it isn’t affecting things too much yet. I’m still writing as much as usual, but have to plan in recovery days if I travel or if I have to pull long hours to get something done. Certainly, the days of burning the candle at both ends are gone, but that is not necessarily a bad thing anyway!

Mostly it’s an invisible condition, but on days like today, I need a little help getting around, hence the stick.

I nearly left the house without it this morning. I’m seeing folk I haven’t seen for a while and get nervous about what they think, which has very little to do about them and a lot to do with me and coming to terms with how things are changing. I have to get it through my head that it’s just something to stop me from falling over (as slapstick as that might be!) I’m still me. I haven’t changed, not in my head anyway. It’s just the body I’m wearing, this envelope I’m all wrapped up in, is a little different now. And there are people who are going through a lot, lot worse.

So, I’m posting this to remind myself that this is okay and to own the situation. I have so much to be grateful for.

Plus, I really like Merlin’s face.

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