Recently I’ve been going through a really difficult time. A change in my medications has gone incredibly wrong, meaning I’ve been flaring in every sense of the word. My pain levels have skyrocketed, leaving my meds completely unable to make any dent in them. I’m having hot and cold sweats, shakes, breathlessness and tremors. My racing heart is causing me to be dizzy and trip over my words, and my feet! On top of all that I can’t sleep at night, even though a constant exhaustion sits over me like a suffocating toxic fog. In short it’s been hell. Complete hell. 

My usual look at the moment.
This morning I woke up feeling much the same as I have every other day. I’d only had five hours of interrupted, restless sleep. I was exhausted and in pain. But, I was determined to get out of the house. As I laid in bed and waited for my meds to kick in, something amazing happened. They actually kicked in! For the first time in a long time the haze of exhaustion began to lift and my pain eased just enough to move around without visibly wincing! I couldn’t believe it! 

Of course I did what anyone would do. I made the most of it! In the car we hopped, and down to the park we went. This time, I didn’t sit on a bench and watch as my husband played with the kids. I got up, and I joined in! Today it was me taking our baby on the rides. It was me playing along. It was me being ‘fun mum’. Yes it hurt. Yes it took my breath away. Yes I’m now in bed feeling like I’ve been run over by an articulated lorry. But it was so so worth it!! It’s amazing the difference a few hours out (if that) can make to your mental state. 

Soaking up the sun and charging my batteries for fun!
Ziplining , slow and low! (I may have kinda fallen off.. but I was scraping along the floor anyway so it was fine!)
Little man loved the swings!
Me and both my boys on the slide.

Technically today I did the wrong thing. Technically I should have paced myself. Taken it steady. Reserved some energy for tomorrow. But what’s the point? What’s the point in saving myself, when I have so many overlapping conditions that tomorrow I can still wake up unable to function? I cannot live like that. I cannot and I will not. These last few months have been an exhausting whirlwind of pain and symptoms that’s left me feeling a shadow of myself. Yesterday I was low. I was the lowest I’ve been in a while, crying hysterically at the doctors receptionist when they couldn’t get me an appointment. Sobbing in the bathroom at 2am as I tried to shower away my searing pain. I needed a day like today. Today was my body’s gift to me, I’d be damned if I was going to waste it! 

As for tomorrow? Well, if I’m out for the count (which I likely would have been anyway) then at least I have my wonderful few hours at the park today to look back on. To me, that’s worth it. 

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6 thoughts on “My Gift. 

  1. I so agree! I do exactly the same thing when I am having a good day. “Go For It”. And yes I do pay for it possibly for a few days after but it is so worth it to feel “normal” for a short time. Glad you had some fun with your family. Those are the memories that count.

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  2. I can totally sympathise with you. Chronic pain is such a wretched thing. As you say, some days/nights are pain free while others l;eave you feeling like a piece of chewed string. while pacing is important so also is seizing the moment and making the most of the rare pain free periods. I was recently prescribed Pregabalin as the Cocodamol I had been using, although effective for a few hours, was not seeing me through the night. The new medication has made such a difference and I’m now mostly pain free during the nights but utilise the Cocdamol for the acute break through pain that can suddenly hit me a couple of hours after I’ve gone to bed. I feel as if I’ve got my life back again as I’m experiencing a much lower pain level and my IBS has settled after years of problems since I realised a couple of months ago that red meat as been causing all the bowel problems. I sincerely hope you can find medications that are as effective for you.

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    1. I’m so happy to hear you’ve found a good mix. I can’t remember a time when I was pain free. Even as a child the pain gnawed at me. But I’m grateful for the days it’s at a more manageable level.

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    2. I’m so glad you’ve found something that works. I’m on Gabapentin and SR Tramadol with Codeine (approved by specialists) for breakthrough pain. Which I get too often. I’m now so desperate I’ve tried a CBD product with the blessing of my doctor. One thing I’ve never tried is pregablin and I am considering requesting to replace my Gabapentin with it if needed. Thanks so much for sharing your experience of it.

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