Joy.

It’s not often the stars align for me. Of course by stars I mean energy, pain and mobility. Today they aligned. Which meant I got to do the most precious activity with my most precious friend.

I got to take Bella for a walk.

We just went to the fields by our house, no where special. But the walk was special. Bella was full of energy and I would walk along, realise I hadn’t heard her for a minute and turn to find her ripping up the grass. Her favourite activity that cannot be stopped, no matter how hard one tries. She bounces and spins in a circle while shredding the long grass, all with a huge smile on her face.

Eventually I’d whistle her tune and she’d come racing to me like I was the greatest thing in the field. She came to rip grass and celebrate with her mum.

The heavens opened towards the end of the walk and we were washed by the most refreshing downpour. Of course Bella hates rain but for me the walk couldn’t have had a better end. It was cleansing.

My mum was on the phone when I got home but when she was free she came and asked me how our walk was. I burst into tears saying ‘it was just so perfect, she was so happy!’ I cherish Bella so much, she keeps me company 24/7 and gives minimal fuss over the change in pace over the last few years. So to get to do our favourite activity together brings me nothing but joy.

Enjoy her goofy smile from her bouncy charge towards me.

A lot of worry, a touch of stress and a dollop of joy.

Some days in this current life of mine are harder than others. Some of them just remind me of the negatives of my situation, the things I’ve lost and am powerless to change.

Today is one of those days. I won’t lie I’m feeling pretty low and shitty. But I know it’s just a day. I know tomorrow my situation will be the same but I can only hope that I am better mentally prepared to see through it. I’ve learned that worrying about things I cannot change doesn’t serve me, but some days it’s easily to put that worry aside than others.

But today I’m feeling pants and I’m weighed down by my worries. The situation I’m in doesn’t just impact my health. In fact I’d say one of the equally large impacts it’s had is on my financial situation. Despite being so unwell and largely bed bound, existing still costs money and situations arise that are out of anyone’s control. Normal life situations that everyone has to face, but are far easier to cope with when in full time employment.

Bella has had over £20,000 worth of surgery and medications over the last 18 months. Thankfully she has insurance but I have to cover the excess and 20% of all bills. In medications alone my 20% costs me £120 a month. Her 3 monthly check ups cost me £70 each and she requires one for dementia and one for her eyes. She’s in desperate need of a new bed, both of hers are over 8 years old and have truly reached the end of their life. There’s absolutely nothing I can do about it, so I’m padding them out with blankets because beds for big dogs are appalling prices and I don’t want to pay for a cheap ‘it’ll do for now’ bed when even those aren’t cheap and it’ll need replacing before long. I also can’t even afford an ‘it’ll do for now’ bed. Her dementia seems to be progressing again and I can’t afford to take her in for an assessment and to make sure she’s on the right medication doses to slow its progress.

Then there’s my car, though not technically mine anymore, it is my only access to independence and my responsibility. I don’t go out often only a couple of times a week maximum and short journeys mostly unless Bella or I have an appointment in bristol. My engine light has been on for over 4 months. I threw my cost of living payment into getting it through an MOT and trying to identify the cause of the engine light, plus paying for Bellas check ups on her eye and dementia. Despite this the light remains and my finances led me to the decision of ‘if it ain’t broke, don’t fix it’. As in the car was running fine so I’ll just not push it and hope for the best. Now the car isn’t quite running right, it’s lumpy and gutless, though not in full limp mode. Yesterday I had to pick my sister up 3 miles down the road and it smelt suspiciously like something was hotter than the manufacturers guidelines would recommend. There is absolutely fuck all I can do about it so now I don’t want to drive it and risk doing more damage than the last 4 months of deliberate ignorance has already done. It’s also just got enough fuel to get to the station but I’ve got nothing available to fill it up with.

I have events coming up, things I need to pay for, rent and bills coming up due and in 3 weeks I’m going to need my car to be able to take me to Southmead for my pre op (see bottom of post) and then Cardiff the following day. I have very limited income. Despite what people might say about those on benefits having more money than most, I can assure you that is not the case. My money comes in in several payments throughout the month which means I’m stuck here trying to work out where to allocate my limited resources best. This has so far been unsuccessful and instead I’m too scared to commit to paying for anything.

I don’t know how to explain it but because what I get doesn’t stretch nearly far enough to meet my needs I’m too scared of prioritising one thing over another and getting it wrong. Because my financial situation has impacted my family too, and the last thing I want is to ask for further help from family who are also struggling because they helped me previously.

To round it off some people I care about deeply are hurting and facing their own struggles right now. And I can’t even get in my car to go be with them just a few miles up the road. Of course I can and am texting/voice noting but it is very different to truly showing up for those I love. I feel wholly inadequate and like I am not supporting them as well as could and should be.

I feel powerless in so many ways right now and I just don’t know how to make it work out this time. I know it’ll just be a really tight blip in the grand scheme of things but that doesn’t help me when I’m in it at the time. I wasn’t taught finances, I wasn’t taught how to be sensible or how to budget and save. I didn’t get those lessons in life and so facing finances is a heavy topic for me. After I moved out of home in my early 20s I decided then and there I’d never be out of control financially again, and I wasn’t. I had a steady income, everything was budgeted and it mostly worked out. Now I have a very limited income which means anything unexpected even if it’s just a small amount is actually a big amount. Hannah kindly sat down with me at the beginning of the year and did a 1 year financial plan and budget. It just didn’t include my dog getting dementia, needing more surgery and my car kicking up a fuss. Finding £30 within my budget is a tight squeeze, let alone when it comes to diagnosing and fixing a car for an unknown sum.

I’m stressed and struggling today. Just a period that’s highlighting how life has changed so dramatically and not for the good. Of course all this added stress doesn’t do my pain levels any good and I’m now into my 5th week of higher than usual pain. Yesterday mum also found some pictures from just before I got ill and seeing where I was and how happy I was with life and my body it hurt. I hope for a more balanced day tomorrow.

If you’ve got this far without leaving after reading about my first world problems then you’re given the gift of a little excitement. MY FUCKING PRE-OP IS IN LESS THAN 3 WEEKS YO! 2 weeks and 3 days to be precise. I don’t have a date for the operation yet but I did not expect to be called in for my pre-op so soon. I mean he said the op would be in the next 6 months but still! I’ll be honest and say when I got the letter it sent me into a little panic. When faced with this very drastic operation being a reality my mind asked me whether my pain was really all that bad. Did we really have to go through with the big scary thing? Of course it is, but I spiralled a little. Now I’m just excited and hopeful. Because this could be the start of a new life for me and that deserves a little joy and excitement. And I’m glad to round off my gloomy post by sharing this little joy with my readers.

The shortest recap and life story I’m capable of.

My name is Chloe and on June 17th 2021, like most of the country, I had my first Pfizer vaccine. I am in no way an anti-vaxxer, as they’ve been dubbed. I do not discuss the pros and cons of any vaccine. It’s a personal choice, though I do believe as a country we were not suitably informed and were penalised for not having the vaccine. That being said, I did continue to get my second and booster vaccine. With hindsight, I wouldn’t have been vaccinated, however at the time I made my choice and I stick by the reasons for it.

What I didn’t know and what I wish I knew was how that first vaccine would have altered my life in such a monumental and irrevocable way. I had a pre-existing neurological condition, and based on that, and the reports of reactions to the Astra zenica, I ensured I had the Pfizer vaccine. The ‘safe’ one. It turned out not to be safe.

Within hours of the jab my condition was no longer responding to medication that had managed it for 6 years. Since then I’ve had 8 treatments and a neurosurgery, all of which have just increased my pain.

These last 26 months have been true hell to live through. And fight. Endless fighting for treatment, help and support. I was an internationally competitive powerlifting, winning medals at all but one competition, including becoming British bench press champion. I’m now overweight, disabled, unable to work or train, in immense amounts of pain and with significantly reduced cognitive function due to pain and medication.

I’ve lost friends and colleagues, some who were both. People who couldn’t understand why I suddenly disappeared and couldn’t take part in normal life, who took my absence as a personal slight. Some who just vanished, without a trace or a text. No how are you, where are you. Just gone. It still hurts that any of that happened, that anyone was hurt by this and that I lost those people from my life.

But none are as hurt as myself and those around me. They see my pain and struggles and still see that I am still me behind them. The ones who have stayed and chosen to fight with me and for me. Who take care of me and do things to make my life easier. To do the mundane tasks I no longer have the energy or ability to do, who accept not seeing me for weeks and who accept when I need to leave their company early. My friends and family who have shown so much love for me it is overwhelming.

My fight is over. I am now on the waitlist to have a major surgery within the next 6 months. A nerve stimulator implant in my head that has the greatest chance of giving me some form of life back. I’d love to have even just 50% of my life back. So there is no reason for me to live in fight or flight mode anymore. I can embrace my down time stuck in my room, I’ve earned the rest. My room is not my prison, it’s now my sanctuary where I go to heal. I don’t have to keep fighting this illness and trying to pretend it doesn’t exist, if I have to stop I’ll stop, knowing that someday soon I might not have to pretend anymore.

Looking back on my life up to that date in 2021, I feel it was rather unremarkable. Sure I worked as an engineer and CAD technician, I was studying to become chartered and get the letters after my name (something my teachers from school would never believe), I was a respected woman in the construction industry. I was an accomplished athlete (another thing that would have shocked my teachers), I hiked weekly with my dog, I drove cars rounds race tracks and restored them with my dad. I’d have barbecues and drink wine late into the evening with my friends. I played pool, drank real ale and had a really close bond with those around me. You could say it was active and accomplished by most standards.

But it was all laced with depression, anxiety and living in the closet. Most of my money went to paying off debts I incurred through trying to look and dress in a way that I thought would make me more acceptable to society. Therefore I never accepted invites to holiday with friends, I didn’t travel or see the world. I couldn’t afford to. I denied myself doing things I craved doing, like coasteering, skydiving, caving and climbing mountains. All because I didn’t have a partner to do them with, I was too afraid to do those things alone. I was too afraid to admit that the partners I was seeking to do these things with were likely the wrong gender.

If this surgery works and gives me a life back it won’t be a life focused on a career. Working to pay off my debts. It will be focused on a life where I work to live.

I won’t be able to go skydiving, but I’ll travel to Australia to swim with sharks, I’ll climb those mountains and I’ll drive the NC500. I’ll get to drive myself and Bella to the beach, we’ll eat ice cream and fish and chips. We’ll camp in my car overnight and watch the sunrise. I’ll get to take her for walks and watch the sunset with her, a bbq and a beer. I’ll get to work my way back up to strength in the gym, post rehabilitation obviously, and I’ll take that damn squat record I was so ready for. My Dad and I will restore the TVR I have in the garage, we’ll go to track days and race meets. We’ll drive to the coast with our roofs down and not care that it’s cold. My mum will finally get to stop taking care of her youngest daughter, I’ll have my own home and she’ll finally get to relax in hers, knowing that she doesn’t need to worry or look after me anymore. We’ll walk around garden centres and I’ll pretend to care about whatever plant she’s discussing, we’ll have lunch and go for coffee. My sister and I will go caving in Wales, we’ll try surfing lessons on the coast and we’ll take our dogs for long walkS. My friends and I will go for that holiday together, we’ll make new memories where I don’t need to leave early, where I can be fully present the entire time. We’ll drink wine and do tequila shots because it’s a Wednesday and we deserve it. I’ll watch and take part in my friends kids growing older, taking them for day trips and cherishing their milestones. Maybe I’ll even watch my own child grow up.

It will be a life where titles, letters and careers won’t matter. It’ll be a life well lived, with unbelievable memories and experiences. It will be a truly remarkable life that was well worth living.

Those are my dreams. My hopes. The thoughts that have kept me fighting this pain, the NHS, and my suicidal intentions. My friends and family have kept me fighting, and so have these aspirations. When I grow old, I want to know that I never gave up and gave myself the life I deserved.