“A multipotentialite is someone with many interests and creative pursuits. Multipotentialites have no “one true calling” the way specialists do. Being a multipotentialite is our destiny.” I stumbled across this today and honestly couldn’t be more grateful. Somehow putting a name to it have given […]
I realise this title seems completely backward. Until lately, I’ve spent nearly every day of my life since being diagnosed cursing my chronic condition. Cursing the pain my IIH (Idiopathic Intracranial Hypertension) gave me. Wondering why me? and wishing it selfishly could have happened to […]
Chronic Pain won yet another battle. It’s stolen more from me than I care to think about. Backed me into another corner that I have too little energy to fight my way out of. Pain is a thief, it steals your life, your very being. Chronic pain eats away at who I am. My only weapon is the love I have for my family.
2016 ended with empty cupboards. Having to make decisions between putting on the heating in my freezing flat and eating. Scraping together that last bits of change, paired with a coupon to buy baby powder. It was miserable, I was miserable. Emotionally I was done, I couldn’t handle the weight of my feelings anymore so I blocked them out completely. Unable to even cry over how much I hated the citation we’d been left in. Unable to shed a tear as I said goodbye to my family and moved halfway across the country to the refuge of my partners family. Repeatedly reminding ourselves that THIS IS TEMPORARY, our new mantra that will one day take us back to the home we’d made for ourselves.
Fast forward a few months to Logan sleeping soundly next to me to as I stared in awe out of the floor length windows at the bulky metal structures sat proudly above. The bold white frame hung over little apartments doors and busy shops below full of people looking for the next January sales bargain. The view was a stark contrast to the smooth, blended colours of the seaside I’d come to call home. I could almost smell the seas salt air over the strong scent of coffee granules that filled the bustling Costa I’d found myself in. A longing for the life I’d had only a few months ago filled in the pit of my stomach, I missed those stupid seagulls and the way the cold wind brushing off the sea. I missed my family and friends more than words could describe but this…sitting in Costa pondering over the last of my Christmas special hot chocolate, peaking over at Logan in anticipation of him waking with that heart-melting smile he always wears, was my life now. I didn’t love it, but I’d become capable of finding the silver linings.
We welcomed 2017 as our little family of 4 (including our fur-baby) snuggled in bed and protected by our love for each other. Things will get better. Even on my worst days, the lowest of days I know I am lucky to be surrounded by love. Pain won this battle but it hasn’t won the war! I haven’t given up, I’m just recharging and then I’ll get back to kicking ass. My first step meant starting fresh. Mrs. Jeeby’s Survival Kit had been my success, but now I looked back it, it felt more like my demise. A reminder of how hard this battle had to be fought. I needed a new outlook, a fresh sheet. So I re-branded and re-launched Mrs. Jeeby’s Survival Kit as My Survival Collective, a new home for my thoughts and feelings. My hopes and dreams and everything in between. A place I could share the good bad and ugly without restricting myself to a life that my chronic health has forced upon on me.
My new mummy status and home have given me a new hope for a better life. Please join me as I fight to get my life back and become my very best self.
Its pretty late for a 2015 review, truth is I’ve had this written for a while. Not can’t sure why I didn’t post it earlier. 2016 has already given so much that I’m just not ready to share yet, but they certainly make up for […]
No one ever plans get diagnosed with a lifelong incurable chronic condition at the age of 21. No. My plan was to grow up, go to school, college and uni. Get a career doing something in IT – I hadn’t had time to narrowed down specifics yet […]
25th October 2015
Today mum woke me up. It’s quite late in the day already, me and MrJeeby stayed up late watching films. Ready for the day I showered, I washed, toned and moisturised my face and even managed to put on make-up before finding something nice to wear and heading out to lunch with my family. It felt so great, to actually have enough spoons to do it all, to enjoy the day and feel like a semi-normal human being. It’s been about 2 weeks post 9th LP, and honestly I am just glad this one had any kind of effect. I had forgotten what it felt like to feel human, i’d lost my fight be my “old self” because until today I couldn’t remember how it felt to be my old self again. After lunch me and shane jumped on the bus to go get some fish food from one my favourite shops before heading home again.
6th NOVEMBER 2015
After struggling to sleep for a while I finally dropped off around 1am.
“Goodmorning Baby it’s 10 o’clock”
Thankfully unlike my recent pattern I was able to sleep in a bit more this morning, I wake up groggy, my eyes are open but my brain isn’t really awake and my body is just dead. I feel so lifeless and stiff. I have no energy as the feeling of a morning pee sets in and hurts my bladder, I’m usually able allow myself some time to wake up before I actually need to get up, I’ll check facebook and instagram. Then see how the site statistic look for the previous day, go and read a previous post to see if i can pick up any of my own spelling mistakes and then maybe get up slowly get up make my way to loo. This morning how ever…well my phone was dead and my bladder was going to pop but I was to exhausted to move. I’d just about managed a sit…
Me “I need to pee.”
MrJeeby “go then.”
Me “My body is body is dead…” i mumbled obviously to quietly for him to hear
MrJeeby “Your body is broken?”
MrJeeby “Aww my poor old robot” he laughed as he rubbed my back. I flopped back down as if sitting up was hard enough. Then he moved so that he could help me off the bed, I still had no energy to move but summoned enough to prop myself up while grabbed my legs and pulled my to the edge of the bed. He gave me a cuddle while I stood then to give my legs a chance to wake up and walked with me slowly to the loo where I slumped down the toilet in the hopes to wake up enough to get myself up when I was done.
It was embarrassing even in front of him, this man I’d known for 9 years, to be in this state, to be this tired and to not even be able to take myself to the toilet. He didn’t mind looking after me, in fact I know that he loved it, he loves feeling needed and he is needed but I wanted to be that strong women again who has all her shit together (no pun intended) after that I manage to get up and make it as far as the computer to sit down and write. We have some tidying up to do today but I have next to no energy today, If what i use in energy that I don’t really have will just make me feel worse. So I do what the only thing I really can, rest and monging out infront of the tv.