Living life with a chronic condition often means being forced to have rest days, even a pro’s at spoon management have random pain days that will only worsen if you push through. I’m the worst at pushing myself too far, trying to get as much […]
No one ever wants to be in pain, to get better and live a healthy life one day would be a dream come true but I’ve also found myself feeling anxious on days I’m doing ok. Here’s why.
It took me the best part of a year to come to terms with my condition, to get my head around the fact that I would live every day in pain and the effect that had on my life. I’d never be that person I once was and honestly I felt like a complete failure. After some therapy I eventually recided with the fact that I probably wouldn’t ever work for someone again. (who would employ someone who couldn’t garantee they could even get out of bed some mornings) Becoming ill meant my focus suddenly turned from working on my career to not knowing what the fuck I was going to do with my life. Before long I began to identify as a “Spoonie”, I found this huge community of people who also identified as the same and I suddenly felt at home. My chronic health became a huge part of who I am. My identity. Who am I now I’m starting to get a bit better? How do I belong in this world? How will I handle people expectations of me now I’m doing a bit better? It’s not like I’m cured but being in a bit less pain a bit less often has sure had an effect on me mentally.
I’m also terrified by the idea of going back to work, the possibility of working for someone else among people who will probably never understand what the past 3 years of my life has been like is scary. Since being ill I’ve pretty much be able to surround myself with people that aren’t judgmental, I’ve kept a small group of friends and pushed away people I don’t get on with, being in a work environment doesn’t afford me the same abilities. I’m scared of being surrounded by judgmental people who will likely ridicule me and judge me when my health deteriorates. Maybe some of this down to past experience, my first job out of uni and before getting seriously ill was exactly the best time of my life and it makes me feel apprehensive about one day going back to work.
I’m constantly worried about people’s expectations of me. Probably the one thing that plays on every Spoonies mind at some point. Society has this unwritten rule that no matter our abilities as soon as we become adults were expected work and pay our way. Something I never really got over as a spoonie and now a mummy is what people are expecting me to do, even more so because for the majority of the time people can’t see my pain. Even are own government have poor ways of coping with and managing chronically ill people, it’s because of this system we had to Birmingham away from my friends and family. To many people go without the help they need because the system expects them to be doing more than they are capable of.
What are your biggest fears? Are people constantly expecting to much of you? Do you dream of going back to work one day?
No one tells’s you how lonely becoming a parent is going to be, sure you have your new partner in crime by your side 24/7 but they spend the best part of a year doing not much but pooping, sleeping or eating. Friends you had […]
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 – and get a career until I had enough knowledge perhaps start my own business in the IT Industry. A carer that allowed me to be a boss that didn’t need to be in the office 24/7 and still raise a beautiful little family and a beautiful home. A lifestyle where money wasn’t an issue and we’d have enough spare bedrooms for everyone to have their own room when ever family came to stay for Christmas. A huge field out back so the big kids of the family could show the young ones how real tree houses were built, and the old ones could sit in front of a log wood fireplace under blankets and watch terribly nostalgic films like Chitty Chitty Bang Bang and Zulu (A much-loved favourite of my step-dads)
A fault in that plan, made me feel like a failure, some days it still does. So triggered the anxiety.
I have talked a bit about my troubles with anxiety before, but this time I wanted to talk about how anxiety fits into the mourning process. In a little under 3 years and I am completely different person because of my condition, there is part of my life that I have had to say goodbye to (even if it is only temporarily) that I wouldn’t have had to, it didn’t have my condition. But it’s all been a part of grieving for the life I’d lost.
The 5 Stages of Grief for Chronic Illness or Pain
(From my point of view)
(A little over a year ago) 1 LP down and I feel great! At least I finally know that’s wrong with me. That good-looking neurologist says 3 LP max and I’ll have my life back, so realistically I’m okay. I don’t really see the point of taking this medication, because I feel fine. I just need to work, I only just got this job and it’s important to me. I’ll deal with my the pain if it starts again, for now I’m fine.
Why can i never get into see my neurologist when I need to?! And why does he never call me back? These meds don’t actually do anything! I’m sick of not getting any answers from anyone. The doctors are supposed to have the fucking answers but they don’t and sick and tic of tired of being left in the dark in pain. They’re so busy seeing everyone else they don’t have time for me.
I don’t understand where my life is going…I’ve wasted over a year of my life now being ill. What the hell am going to? I’m going to be like this for ever and I’m going to poor and my children, if i can even have children are going to be poor and I’m just useless. I’m so scared for my future, i don’t see how it’s gonna get better?
DEPRESSION (and/or ANXIETY)
I’m failing because I can’t work. I’m failing because I can’t protect my family, i’m barely strong enough to look after myself let alone anyone else. My family is getting stick and my sister is having to be the strong one…it’s my job to be strong and look after everyone because that’s what I’ve always done but I can’t. I don’t understand my purpose if I’m not able to do what I’ve always done. (honestly tearing up while typing, my anxiety for these parts of my life is this a big thing for me)
There is so little of my life I can control now. I understand I still have some thing I need to work on, and I remain hopeful that we find something that helps me feel better, but for now I have to remember I am doing the very best I can and not beat myself for the things that I am unable to do. I know that I love helping others and I enjoy my passion for IT so why not try putting them together.
The most important thing to remember here is that these stages, don’t happen in order, and they can change daily or even hourly depending how you feel. Just because you have reached acceptance it doesn’t mean “boom” your done *throws confetti” congratulations. Chronic illnesses are hard and relentless and draining, don’t beat yourself for being angry or having some anxiety because the shit you deal with…it sucks! Nearly three years on and I know now you’ll probably never leave this cycle but as time goes on you’ll find yourself sitting in acceptance a little lore often for a longer.