SpoonieLife.
Lost to the oblivion that was pain.
I couldnt even lift my head off the bed, limbs like slabs of dead meat useless & hanging.
Hips that felt disconnected & loose making walking impossible. Bone pain in my legs, deep, throbbing, alive.
A lava lake burning under my skin, itching, spiking, blistering pain. Skin so raked over by allodyna that anything not 100% cotton with all labels cut from could not be worn.
A slow sinking feeling of isolation because nobody could touch me without my skin reacting as though on fire.
My hands had become screwed up balls of pain, finger hooking over finger. These claws id been left with could do nothing for themselves.
Memory failing more as each week rolled by, no retention of new information & struggling with fuzzy memories of the past. I felt my mind was lost at sea.
Feet so full of broken glass when stood on, knees beaten with a hammer, face kicked by a horse, hands stood on by an elephant, head knocked about by a nail gun, memory trickling away like a nosebleed. Body hit by a bus then reversed on. Skin dipped in acid then set on fire.
Muscles set in semi state of levidity with the little electrical spikes causing spasms MASSIVE spasms sometimes.
Exhaustion just from being awake !?! Breastbone & shoulder blades splitting apart with every breath I took.
Why am I so damn ill ? Is it worse because im laid down so much & the body doth protest. Is it a 2yr long flare ? Is it my new normal ?
My brain fogged over I found thinking & concentrating hard to do. I felt I was losing myself, I cried daily my head lost to a past where anything Id wanted to do was possible.
Eventually I went to see my Gp who said he agreed it was depression & I was given 20mg fluoxetine. The edge taken from the anxiety id felt was noticable.
Now able to think more clearly I went to the Gp again & requested lidocaine for my pain, I knew the morphine was causing its own adverse reactions.
It took a year before I got the lidocaine & it wasnt an easy ride. Knowing id feel better if I was dead yet compelling myself to see daily positives was the biggest battle.
My background as a psychotherapist bringing its own shit storm with it, denial, anger, resentment. Where was the acceptance, self care, preservation & love.
I totally withdrew from the world around me. My marriage had gone past breaking point, we had split for good. This caused me to have a breakdown.
Unable to control the hurt & greif any longer I slid to the floor sobbing & unable nor willing to move stayed there. My daughter found me, seeing how frightened she was, I reached out for help to my aunty & parents.
My aunt got me off the floor onto the settee, wrapped me in a blanket & hugged me till my parents arrived.
I wasnt ready to talk, words felt totally inadequate for how I was feeling. So I said nothing & went with my parents to theirs for a week.
Slowly I opened up to my mom, it helps she isnt judgemental. I talked through everything. I also made the descision to talk to my Gp again.
Now on 40mg of fluoxetine & alot less stress because id finally talked, id lessoned the burden & rescued myself as much as I was able.
My head balancing out I made choices, some hard, some easy but all with one goal. To be as happy & active as I can be in this life. This is my new normal, this is me.
Constant pain messes with the head, doctors need to seriously get to grips with pain releif for chronic pain patients. Its no good just offering talking therapies to a person whose illness has taken the next step. Its not their minds causing the problems.
Add mental exhaustion to insomnia, pain somnia, drug reactions, fatigue & constant pain you have a remedy harsh enough to bring people to the brink.
That was me on the brink, not willing to take my own life yet wishing death would call for me. I wanted the reaper to be my new best friend.
As my mind opened up & talking was now easier my husband & I made choices about our marriage & what we wanted, expected from eachother. The truth was for how far we had come apart, we trufly wanted to be together.
We had stopped communicating. My hubby unable to deal with what my illnesses did to me had no idea he had withdrawn from me. I thought it was because he didnt want me anymore.
We had only been together 2yrs when the illness started and by 4yrs where aware of how savage it could be. We didnt talk though, I had no idea of impact on him & he no idea of the emotional impact on me.
Chronic pain is debillitating, it wears a person down, bit by bit, slowly crawling until eventually numbness is all that is left. Our fragile bodies aquire fragile minds.
Its a hard cycle to break & can have devastating impacts. Be aware of your mental state. Do not be embarressed to ask for help. Depression is treatable & it isnt your fault.
Part of my recovery involves a small dog called Ollie. I had found when at my aunts no matter what subject we broached I didnt get stressed or upset because the whole time I had been petting Bruce, her dog.
I even used to miss him once I came home. I realised his calming effect lasted hours. Id always put pets far from my mind telling myself im to ill to care for one.
I spoke to my husband who was also against pets, fearing he'd become any pets main carer. I vowed id look after a dog. I needed something that needed me.
We rescued Ollie a 10mth old JackChi 3mths ago. The time that I put into him keeps me occupied, I spend less time pondering my disabulities.
He is my little soul mate, where I go he goes. At home he does not leave my side. If im bed bound he is here with me either asleep on my legs under the duvet or we play little games I can manage.
I pet him all the time so my stress levels stay down. When im up & about he is my little companion, taking away the lonliness & isolation I felt by being by my side no matter what.
My aim to look after him myself is paying off. I manage to walk him 3x a week. He runs like a mad nutter for half n hr off lead as on lead he knows the pace isnt fast.
Best of all the whole family love him & he has had a positive impact. Especially with stress, everyone is so much calmer & relaxed.
Im still in recovery now, its not over yet. Consultant said may take a yr to stabalise me on the lidocaine but thats ok because iv learned to communicate with the people closest to me & I have Ollie.
To smile every day rather than cry, to see life is only over when I give up made me want to fight again. Not my disabilities as they are incurable but my mental health.
The one thing I could have a degree of control over. So I took control back. Its been a yr since I blogged. This is my 2nd blog in 2 weeks.
Whatever you do, dont give up, pick your battles wisely & survive because being a victim wont get you anywhere but stuck.
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