Disappointments…

One of the hardest things about having a long-term or chronic illness, is the waiting.

You always seem to be waiting for something. For more tests. For new medications. For a day that’s “good”. For sleep. For companionship. For the day you feel well enough to work. Or to play. For someone to understand.

So when something goes right, even the smallest thing – it’s like a little victory. A battle won.

Now, some of you will know, that I’ve been unlucky enough to be hit with all of this twice. Firstly, 8 1/2 years ago, when I was in a hit and run. I have never had a resolution for that. After operations, procedures, therapies, counselling, treatments – I’m left with no answers. But I learnt to live with the residual pain. I got myself strong. I learned to manage what I was given, and stop feeling like a victim, and start behaving like a fighter.

I started to live a “normal” life again. With some adjustments, I got back to a place of OK. Pretty good, in fact.

Then, in January this year, I discovered that some of the new pain I was experiencing wasn’t in fact due to those old injuries, but was due to imploded PIP implants – something I’ve written about extensively*. I’ve had the operation to replace them and remove some of the leaked silicone – but 2.5 months later the pain hasn’t gone. So when I was recently given hope by my Surgeon, and told that the pain I am experiencing came from Lymphangitis, that was treatable with medication, my hopes soared and I saw a light at the end of the tunnel. It felt like my pain was justifiable, and that in a few weeks, there was an end in sight. It felt like this time at least, there may be a finish line.

2 weeks on – things are no better. The pain keeps me awake at night. I suffer extreme exhaustion after just a few hours after the house. The pain stops me having physical contact, hugs hurt, lifting my arms hurt, laying down hurts.

So I went back to my GP yesterday to talk it through – and was told that previous diagnosis was probably wrong. Whilst I do have some of the symptoms, I’m not responding to treatment and more tests are needed. So after that hope – comes huge disappointment. I now have to go back to the hospitals, have blood taken, have scans, have more tests. It feels like de-ja-vu. I feel like all my hopes have been dashed, and I’m back to waiting – again.

I know it could be simple, I know it could be something that’s easily treatable. I understand that tests are good, as they can help to discover, or rule out possibilities. But in truth, I’m sitting here, terrified, that I may have to live with not one long-term condition, but two.

And I don’t know how to deal with that.

I don’t want to moan. I feel like I’m doing that too much at the moment. I understand that life is full of ups and downs. Believe me – I’ve learnt to love the highs, and ride out the lows.

But I wish, when it came to my health, I could have more hope, and fewer disappointments.

I’m not looking for perfection.

I’d just like some answers. And my life back, please.

*I write about this for awareness – if I can help one person avoid going through what I’ve been through, or stop one person feeling lonely – I feel it’s worth it.

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  • I wasn’t ordered to have them by the Dr’s – but my body had changed significantly and it was the only thing I could ‘fix’ to try and get myself back to normal. I couldn’t help the limp at the time, or the fact one shoulder sits 3 inches lower than the other. I couldn’t help the fact my back was slumped, But I could fix the fact my back muscles had been so slack they couldn’t hold things in place – so chose to. Self confidence/esteem more than anything else. And it helped a lot, for a while – until it all went wrong. I certainly wouldn’t recommend it to anyone now – but hindsight is a wonderful thing.

  • I have several friends who have chronic illnesses and it is a daily reminder to appreciate health when it’s there. Would sending you a chocolate brownie help in any way?

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