Waving, not drowning

I love the poetry by Stevie Smith and this is my favourite of hers. I know it has a deeper meaning to it but it just gets me every time. This poor man being totally misinterpreted. I kind of resonate in that respect. When you don't like to make a fuss and you don't want to cause conflict or create an issue, you kind of appear to be waving when really you are hoping for someone to come and get you.
When you are known as the life and soul of the party, the cheerful one, Little Miss Sunshine with brass knobs on, you don't want that bubble to burst so you grin and bear it till your jaws ache and that bubble bursts.
I can see this now I have a chronic illness. I don't want to moan and I fight every day to try to make each day as normal as possible. I have a window of activeness, then pay for it afterwards. That grin is still there, bearing it!
Your public face is so much different to the one back home in pain and shattered. It is a bit similar to the Stevie Smith poem in that people who don't see me daily or weekly, at my very worst, just think I'm happily waving. My close family and friends know. They've seen past that smile. They've heard me when I was silent. These people have thrown me that life belt and are helping me through it everyday.
I am a changed person. That's what having a chronic illness does to a person.

I began this blog quite a while ago, and like a few others, left it as a draft. I was wary of posting it and appearing too negative. I try to keep my blogs upbeat and positive and did not want to appear as though I was moaning. Although, I have learned over the years that maybe we are allowed a little moan, just a little one! When I meet close friends, we have a hug, get the moaning bit over, hug some more, maybe even cry and, not as often, have a little curse! Then we are ready to have a proper chat, a laugh and a reminisce because the dark cloud or the heaviness we were holding in, for whatever reason was shared and halved, or whatever fraction depending on how many friends you are with!
Don't ever feel like you can't say, hang on, this is happening at the mo and I need to have a moment. You won't spoil the fun of the meet up! Friends who know you will get from your body language that you aren't you and they'll be glad you chose them to open up to. That's what friends are for.
When you have a chronic illness, you are terrified you are going to be labelled with it. You do not want to become the friend or relative with whatever illness, the one who used to do things but now not so often. You do say, very often,
"I'm fine".
What is refreshing though, is when you can meet with a group of friends and family, who know you are not fine and that you've probably spent the whole morning in bed, in pain and got up five minutes earlier to meet and that when you get back home, you will probably go back to bed. With these people you can state simply what is going on with you, hug it out, then have a laugh and eat a big piece of cake.
You do get paranoid that other people might think you're still going on about that symptom? Are you not better yet? These people are few though and the majority are very understanding. That is the key word. I am in a few Facebook support groups who say they do not want sympathy and they do not want to be classed as a victim. Absolutely! What they want is a bit of understanding.
I'll never forget a lovely lady approaching me at the dentist while I was recovering from a vertigo/dizzy session. She must have identified with me on a deep level because she started telling me about her illness 40 years since. We talked for about three minutes. Three precious minutes because in that short time, we bonded over our experiences. I think of our conversation often and her words still bring guidance to me now.
When you have a chronic illness, you aren't going to get better. You learn to adjust and cope. I have a fantastic support network and a very good sense of humour that has not let me down yet! I am also very aware that things could be so much worse and that thought keeps you going daily. It is not about comparing. Everyone is going through something. It's about accepting it and getting on with it.
I could not have written that last sentence this time last year. What a difference a year makes!


  1. Yes a sense of humour definitely helps. Keep smiling!

  2. Definitely! When you're smiling, the whole world smiles with you!


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