Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘labour’

CRPS & Dystonia

I first heard the words Complex Regional Pain Syndrome and Fixed Dystonia back in 2009; I had just been admitted to hospital with unbearable pain, colour changes, temperature fluctuations and a hypersensitivity to touch in my right leg. I would spend the following six months confined to a hospital bed learning to retrain the damaged nerves. It was a hell I would not wish on anyone. I am one of the lucky few, whilst I never achieved full remission, the pain eventually reduced to a tolerable level which only flares up if I lie down on that side of my leg for too long or bash it. Unfortunately I was rediagnosed with CRPS in summer 2015, this time it had manifested in my left shoulder blade and arm. Once again it had been caused by repeated injections to the same site which resulted in damage to the nerves.

CRPS has been a condition I have fought for many years, generally I have a good handle over it. I know what to avoid and how to help myself as much as possible. Yet every now and then I have days and nights like the last 24 hours. It is hard to describe the agony in which I have spent it in. The night before last I simply bumped my thigh whilst getting out of bed. The pain at the time seemed excessive for such a little bump, but I presumed if I lay down and rested for a few minutes it would die down to its usual level of simple discomfort. Instead with each minute that went by the pain intensified as did the spasms.

I made the decision yesterday not to leave the house, I knew I would be fully reliant on my wheelchair and that even the lightest breeze would reduce me to tears. Instead I kept myself fully medicated on Tramadol which dulled the pain slightly but nowhere enough. I needed both my walking sticks to hobble the few steps to the toilet. Each accidental brush from the cat as it went past left me biting back screams and in yet another wave of tears.

The spasms and pain kept me up for the majority of the night. I managed just over three hours sleep in the end.  The spasms twisted my leg into positions that resulted in multiple subluxations, and my nerves flaring meant that I could not bare the touch of clothing, the mattress beneath me, or a duvet. It’s hard to explain to someone this type of pain, at the point of time I would have jumped at the opportunity to have the nerves severed. To be honest, even right now at this time of writing when the pain is slightly reduced but still horrific I would beg for it to be done. Let me put in perspective for you,  full blown labour is easier to deal with.

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Whilst the pain is improved today I am still struggling. I feel as if someone has sliced my leg open multiple times from my thigh down to my soles and has rubbed vinegar into the wounds. The constant spasm in my thigh has left me exhausted and desperate for a relief that seems as if it will never appear.

I know that in a few days time in all likelihood I will be back down to my usual levels of pain and spasms, but there is a niggling fear at the back of my mind that it won’t reduce further. That fear is more terrifying to me than anything.

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Welcome To The World

It’s been over a month since I last posted here, thank you for all the lovely comments and emails checking that I am okay. I’m absolutely great, on the 14th May at 22.15pm I gave birth to our little boy Stefan Elijah. I have spent the time since adjusting to life as a new parent and learning how to respond to my conditions postnatally.

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I was extremely lucky during labour as my body behaved far better than I expected it to and my seizures never reared their ugly head. Despite my original concerns about an epidural I requested one, my labour was induced via a hormone drip which meant my contractions were rather literally constant which I didn’t cope well with. Whilst the epidural didn’t work fully (I could still move my legs and feel a lot of pain despite several top ups) it took the edge off and between it and gas and air I was able to cope far better. I went from saying I couldn’t cope anymore to having my inner geek come out and compare labour to an Orc trying to get through a hobbit hole! I have no idea how long my labour lasted, at 6.30ish pm I was only 3cm, so I was not classed as being in established labour, yet less than 4 hours later our little boy was here.

Since the birth my pain levels have dropped dramatically, I think mainly due the fact that he is no longer able to dislocate my ribs! Whilst I’m counting down to my botox injections, I’m thrilled knowing the appointment is in the post, I’m managing my jaw and other spasms rather well. I no longer push myself to get through any plans I had for the day if my spasms are on the more painful side, as it’s not worth risking having a seizure. Doing this has meant that I’m not wearing my body out and am needing less medication.

My Ehlers Danlos is causing a few issues at the moment. During birth I obtained a 2nd degree tear. Despite being stitched up at the time my body isn’t healing, so almost a month on I still have an open wound. Whilst I wait for a plan of action to resolve this I’m resting and on regular antibiotics to help.

All in all I am extremely thankful that the birth was so straightforward and I am loving life as a new mum. My partner is a fantastic dad and is great at helping me out and letting me grab some more sleep. I’m aiming to get back to blogging more frequently over the next few weeks, so check back for updates.

 

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