Monday 31 October 2016
Whenever I told anyone, I'm getting Chilli Pepper patches to help my nerve pain you can imagine the weird looks I was met with, I mean Chilli Pepper to help nerve pain. ? but yep you heard it right, lyrically chilli pepper, it wasn't a case of standing in the hospital while the doctor crushed up chilli from the local supermarket, It came prepared in a small patch (a very hot patch)
Back in March when my infected pacemaker was removed I've suffered from pain, my cardiologist refered me to see a pain specialist and spoke with a plastic surgeon who both diagnosed the pain I was experiencing as nerve damage, Since then I've been placed on a variety of medication and painkillers to help combat the pain, the huge problem was these drugs are ok to take now, but being young and wanting more children in the future, that kind of threw a spanner in the works. All the medication I'm on isn't safe to take during pregnancy, I also didn't want to be on painkillers long term.
A few months back I happened to stumble upon the program 'the doctor who gave up drugs' were the doctor in the program Chris van Tulleken stopped patients from talking painkillers and instead tried other methods, part of me felt this huge weight of worry, I was scared that was the route the pain specialist was going to go down, scared of the unknowing, scared of suffering pain and nobody helping me, I could see the pain in the girls eyes in the program knowing exactly how she feels, knowing that must be torture.
As I swallow Tramadol, Macklemore's new song 'Drug dealer' plays in my head I sing this song at the top of my lungs as I'm hanging up the washing, it's one of they songs that its tune struck a chord but suddenly a horrible feeling hits my stomach , because as much as I like this song he paints a picture of drug abusers but blurs out people like me who have chronic pain people like me who don't want to take pain medication but have no choice, the pains to much, one of the tablets I'm on Gabapentin isn't just one tablet a day it's split up into taking 3 a day and the side effects are nasty, one day as I woke up, for a split second It felt like I was falling, as though the bed I was lying on had disappeared from underneath me or another night, As I woke Dougie in the middle of the night, I told him something was wrong with my body, because the numbness and tingling was horrible, the left side of my body was completely numb, its like my arm and leg weren't attached, the tingling hits me as I sit in the car as I try everything to bring the feeling back to my body, but without them I cannot function, the pain hits me hard, it takes my breath away and I end up crying real snottery tears. When I first met the pain specialist he told me sometimes nerve pain gets better as time goes on,but most of the time it didn't and it was most likely I was going to have this pain for the rest of my life, that was hard to swallow, it took a while for it sink in, he did go down the route I thought he might like Chris the doctor in the program, but instead he mentioned Chilli pepper patches and figured it was worth a try, I didn't have anything to loose, he warned me it was painful and if it didn't work we would cross that path when it came to it, I could still take tablets if need be until the time comes when I want another baby.
Now I understand your probably reading this and thinking how can Chilli Pepper get rid of nerve pain So I thought I would explain it all here.
The patches contain the active ingredient Capsaicin which is the natural substance found in red chili peppers which gives them their heat. Capsaicin works by desensitising the sensory receptors found at the end of nerves. When activated by painful stimuli they send nerve signals to the spinal cord and brain that results in the perception of pain, but when capsacin binds to these pain receptors it initially causes a painful burning sensation, but with continued use of capsaicin the pain receptors become overloaded and eventually they desensitise which makes them less responsive to painful stimulation this is what relieves the nerve pain. (http://www.netdoctor.co.uk/medicines/aches-and-pains/a8755/qutenza-patches-capsaicin/)
So I had my first patch placed last Thursday, the patch was placed by a nurse and was to be left in place for an hour, an hours nothing right so I kept telling myself , but it was the longest hour of my life, when she asked if I wanted a cuppa or would I like to go for a wander and come back in an hour,(sooner if I feel the pains to much) which straight away I didn't like the sound of but I figured how sore and hot could one patch be, I mean one small patch would be nothing right, a walk in the park compared to 3 ablations, when it was first placed it didn't feel like anything. Dougie knowing me better than I know myself said we will go for a walk, which I'm so glad we did,slowly I felt the skin under the patch get hotter and hotter until it was burning hot, red and itchy, We walked round the charity shops beside the hospital which took my mind off how much it felt like my skin was on fire, as Dougie pointed out nice dresses, something he never does but I think my facial expression said it all as I was stupidly waving my jacket like a fan over my chest trying to cool it with the cold air. I think if I had sat drinking tea it would of been a completely different story, this is the reason I drag Dougie to appointments like this for that purpose because without him, I would of been crying even more snottery tears and the patch wouldn't have lasted half an hour let alone an hour As we returned back to the hospital the nurse looked at me and said how was it ? your still smiling anyway so it can't be that bad there's still another 10 Min's to go, 10 minutes which I sat on the end of the bed biting my tongue for as she explained to Dougie what the patch does.
Its still early days to know if they've been successful or not at helping my nerve pain it takes 2 weeks to feel the full effects but fingers and toes crossed it works, the pain's still there although not as bad and the stingy pain that random hits hasn't so its defiantly doing something, if they do work I will have to brave it all again in 12 weeks. It's amazing that there's so much out there that can help pain not just drugs that you don't hear or even know about, I mean I hadn't ever heard of chilli patches.
If you have nerve pain don't let my experience of the pain put you off, its like having really bad sunburn for 2 days and then it disappears, as much as It hurt I'm definitely going to give it another shot, so if your like me and have nerve damage and pain, ask about chilli pepper patches there worth a go, a pain specialist who specialises in nerve pain is the person to get in touch with who can assess and guide you.
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Sunday 16 October 2016
As humans we all seek understanding and empathy to our problems and the obstacles we face. Seeing is believing and when there's nothing to see it's inevitable that most of the time we don't get the understanding we desperately need or want . In the world we live in, people judge us for not meeting what their vision of pain and illness is, our struggles and obstacles no matter how big or small feel invalid because of how subtle they are. Although it shouldn't matter wither people can see them or not,because there still there even if they can't be seen but for some reason it does matter. We feel we need people to understand about our pain and illness because it's a part of who we are.
When you suffer from chronic pain it means a lot of things change and a lot of the changes that happen are invisible, you feel invisible, it's like your living behind an invisible window isolated from everyone and everything outside of it, the pain you feel is unique and personal, it cannot be seen or measured, there's no textbook or magic wand to make it better, consider yourself part of a secret group one you wished you didn't have to find or join, there's the people in the group who get it and then, there's the ones who don't. the ones who dismiss you as being over dramatic ,lazy even making a mountain out a molehill, it's hard to explain what it's like and it's even harder to imagine especially If you've never experienced it before, even people who have experienced pain in the passed have a hard time remembering, unless there unlucky enough to experience it again.
Having nerve damage in my chest its painful, it's there everyday but nobody can see the pain its hidden underneath the clothing, clothing that's a challenge to figure out, because as cheesy as it sounds a wardrobe full of clothes but nothing to wear always comes to mind because straps, buttons even wearing a certain bra exacerbates the pain more, others cannot see that dragging yourself out of bed in the morning, is a challenge because every movement hurts, others don't see that sleep is so hard to come by because the pain haunts you, you feel like you've been buried in quicksand and there's nobody there to save you, there's no escape.
when you suffer from chronic pain you don't want others to feel it or be in your shoes, you don't want them to imagine what it's all like, you just want people to acknowledge and recognise the difficulties you have, you just want to feel valid as a person with those obstacles and difficulties regardless of what is seen and what isn't.
So here I was sitting in the chair at the hospital waiting to see the pain specialist for a follow up wondering what she would say about my chest pain, the fact that things were improving but now it just feels like I'm taking 1 step forward and 5 back. Would I be hung for not taking my medication how I should or for taking more than I should just to keep things under control would I be shot for not giving the lidocaine patches a chance to numb my chest and work, it kind of feels like your in trouble for not improving.
Instead she did something I wasn't prepared for when I explained my pain was the still the same, the pain still wakes me up during the night with a pitiful smile she listened and let me carry on talking when I explained how I hate taking all this medication. Because I hate feeling out of control, I sleep but I don't feel like I've slept in days, I feel dead to the world yet I'm alive and awake, the room sways slowly from side to side even though I'm standing completely still, she told me we would go ahead with using chili pepper patches to try and desensitise the nerves, I said ok not knowing what else there's left to try if they don't work.
What came after I wasn't prepared for, She stopped writing and handed me the information booklet about the patches. as she spoke I felt this huge weight of worry suddenly lift.
" It's unfair all this happened when it probably didn't happen to anyone else that day, I know it can't be easy being young and having a pacemaker, sort time off work, sort someone to look after the baby, sort someone to be there for you, have a read and call me when your ready there's no rush just as long as your happy"
Instantly I felt my defence walls crumble, it felt like it had been years since someone did something as simple as recognising I'm a person who is in pain, recognised I'm a mum and a wife who had responsibility's, a young girl that beneath the clothing and smile still felt vulnerable, god she even acknowledge that having a pacemaker at 25 isn't easy it's completely life changing.
When you live in a society were hardly anyone has empathy and understanding to what they don't physically see validation and recognition doesn't happen often, not only did she validate me and my feelings, she recognised all the obstacles and difficulties that were there , it was like she read every thought that was running through my brain, it's like she was saying she could see them, she could feel how heavy the weight was, she even reminded me I was important I needed look after too, my body was important it needed time to heal.
It took everything in me not to cry like an idiot it was like suddenly I remembered I am in pain, I do have permanent nerve damage, I am young to have a pacemaker, I'm not dramatic, or lazy I have feelings and my feelings were important, My happiness was important.
In that small 5 minutes she reminded me I'm only human, we're all vulnerable , we all have unique circumstances outwith what we came to the hospital for, it's ok if the rest of the world can't see or understand them because she did.
She was just doing her job she helps me manage my pain, but she put my feelings of happiness before anything she wouldn't realise how much her words touched me that day, for once I felt my feelings and problems were valid I actually felt happy about the situation because she understood living life like this isn't easy.
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