Be the Best Version of Yourself

I’m in the midst of a flare.

More specifically the pain from nerve root damage in my back is uncontrolled.  Driving me insane! Those of you who have been Pals for some time will know that this pain is usually tamed by my spinal cord stimulator – an implant that scrambles the pain signals to my brain – but this week there is a battle going on between my body, the stimulator and my head…..physical, psychological and emotional.  The heat and humidity is ensuring that the other pains in my joints and soft tissues are also flaring and my autonomic nervous system has frankly gone haywire.

The changes in air pressure and temperature have always affected the metal skeleton that bolts the bottom of my bony spine together.  This spinal fusion currently hurts – it hurts at the immediate vertebra level above the fusion (my EDS means the spine overextends even more due to the bones below being fixed); it hurts in the bones that have been cemented and screwed together with titanium nuts and bolts; it hurts in the surrounding muscles and soft tissues trying to hold the whole lot together.  In fact as it starts to feel more stormy, I am certain that the titanium is about to break loose and rip through my skin, which feels like it is stretched tighter than a drum.

 

 

 

I feel that I should at least be able to use this time and be useful. Write, read, catch up – but the symptoms have a way of robbing that time and creating a thick pea souper of brain fog and fatigue.  Concentration is poor and I seem to spend periods of time lying on the floor, unable to do anything – this post is taking hours to write.

I am irritable, stroppy, snapping at the family.  My patience level is zero.

I feel that I let myself and others down as I crawl between the sofa and the floor and bed.  I know that staying still is the worst thing to do, but is is tricky to keep up that physical exercise that we are told we must do when in the thick of a flare.  There is so much advice out there for coping with flares and chronic pain, the majority well intended, but there is no one size fits all or one quick fix.  We are all different.

I have made this flare worse!  Wise? Probably not.  Worth it? Definitely!  Tuesday evening we attended Prize giving at the lovely girl’s school  – she protested that I didn’t need to go,  but I was determined I would see her mount the stage!  It was hot, there were performances, there were presentations to the year groups, there were presentations and words about every girl leaving the sixth form, there was the guest speaker’s speech.  Then there was yours truly sat in my wheelchair – slap bang in the middle of the front row!  A perk of needing more space to accommodate your wheels, but a definite disadvantage for quietly creeping out.  When the dodgy shoulder slipped out of socket and the neck and whole arm started to shake with spasm, I couldn’t even have a sneaky puff on my Medipen CBD vape – best birthday present ever!! (more of that in another post). Might have raised a few eyebrows!

It was tough sitting still for so long and I had the feeling that my head was too big and heavy for my neck to support – lollipop head, but the guest speaker, an old girl of the school, left a lasting impression.  Currently a senior figure in one of the “Big Four” accounting organisations, she spoke to the students about achieving their potential in whatever they chose to do – she said that whilst she knew she would never be saving lives, making significant discoveries or winning a peace prize, she had tried to be the best version of herself.

Mauve balloons

“Be the best version of yourself” – isn’t this something worth striving for no matter our individual circumstances? I have been thinking this week that even with a chronic illness there still a best version of you and of me.  It may not be the same version from 20 years ago, and it sure as hell isn’t the best version that I had envisaged, but isn’t that true for everyone?  Circumstances change and so do we.  The 18 year olds who released balloons from the drinks reception after the ceremony have their lives ahead of them – exciting futures that will mould them and change them.

I won’t lie – the best version of me has not been a pretty sight nor one I particularly like this week! But it is something that I will strive for, and if my semi-adult kids can learn from this and try to be the best version of themselves, then I can be happy.

I’m in the midst of a flare – but it will end!

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Best version of yourself

 

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22 thoughts on “Be the Best Version of Yourself

  1. Having broken my back twice and been suffering from neuropathic back an join pain for over ten years now I can empathize with you. Yes the weather does make it all worse. Then to top it all I fell while dog walking on Tuesday night , spent three and a half hours in A&E. X-ray showed no breaks but tendon, nerve, soft tissue and muscle damage! Rest, elevate, ice and pressure bandage as you say can’t stay in one position for long so not fairing well either. Sending you hugs. This really isn’t a moan fest just letting you know you’re not alone. You know that but as you say we need to be the best we can when we feel the worst we can. More power to your elbow.💜💜💜
    ..

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  2. What strength, Claire. Am sure your best version was more than enough, and I hope your pain eases up soon. Am also sure that your girl must have been so proud, happy and appreciative of you. Hang in there, you’ve inspired me with your strength for today! 😉

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  3. I bet your daughter really appreciated you being front row and center to see her receive a prize, but ouch ouch ooooowuch for having your shoulder slip out of its socket while you were there!! 😦

    My mum was in a wheelchair for most of the time I was at school, and I have to admit, it was awesome that she always had to have such a good seat due to her wheelchair. It’s one teeny perk to help make up for all the rubbish pain your are experiencing.

    I hope this flare up goes away soon!!

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  4. You have beautifully sculpted hope and perseverance and seeing that brighter perspective when times are hard, and the notion of the ‘best version of yourself’ can be hard to swallow when it seems so different to what you’d imagined. It changes all the time, how we are and how we cope, and we need to remember that we are enough. We can only do what we can given the circumstances and the resources we have. You are incredible for putting a positive edge to your post when I can almost feel your pain through your writing. I’m so sorry you’re flaring so badly at the moment and although I can’t do or say anything to make it any better, please know I’m thinking of you, as are your other readers and your family, and we’re all rooting for you. xxxx
    Caz

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  5. Having two titanium hips and a reconstructed shoulder myself, I completely feel you when you talked about the pain it causes to all the surrounding muscles and tissues trying to hold it all together. The pain can get pretty vicious when you have flares like you’re experiencing right now. I wish I could take it all away for you but the best I can do is pray. You will be in my prayers for the long haul! Keep your head up! We are warriors! ❤️❤️❤️

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  6. I am so sorry you are dealing with so much pain right now Claire. I know it is very easy to be snappy and even a little hostile when in a lot of pain. Your daughter knew how much you were suffering, but I am certain she was delighted you were there front and center to see her receive an award! That not only shows the incredible amount of strength and determination you have, but also what an amazing mother you are. All of us pain suffering warriors experience so many changes at different times and I do believe you are pretty amazing and will start feeling better in time, I just hope for your sake it is soon! Please know I am thinking of you and sending you LOTS of positive and healing vibes!

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  7. The pain must be horrible. I live next door to a neurosurgeon who engineered discs and is living off the royalties. You should come to Colorado and try medical marijuana! (You can take pills and use topical forms.) It’s supposed to be amazing at alleviating pain. I’ve had several surgeries in the last few years and have found good old Tylenol and Ibuprofen did better than the oxy’s.
    Sorry if my suggestions are annoying. I just hate to know someone is suffering.

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