A Survival Collective from a Chronically Ill Mummy

Tag: IIH

5 Things I’ve learnt from having a chronic condition

5 Things I’ve learnt from having a chronic condition

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 […]

The 5 Stages of Grief for Chronic Illness

The 5 Stages of Grief for Chronic Illness

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 […]

A Very Real Comparison of Life with Chronic Pain

A Very Real Comparison of Life with Chronic Pain

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 “yeh.”
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.