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Today’s not a good day. Neither was yesterday. We’re in a heatwave and that just increases my pain and ability to cope with it. I’d arranged to see my grandma Monday and I had to cancel and suggest Tuesday as an alternative. Then I had to cancel that and it ended up being a phone call on Wednesday instead. This is my life, I don’t get to make plans. I don’t get to schedule even an immediate future because it nearly always has to be cancelled and reorganised. But when my Grandad died just over a week ago, and knowing how precious the time with him was, it makes cancelling on my Grandma that much more of a bitter pill to swallow. Along with a wee capsule of grief and anger.

I’m fortunate to be surrounded by people who understand. Who understand my pain and recognise that these things are out of my control. They’ve seen me push through to keep plans made and the agonising effects pushing through has. It depletes my energy, making it harder to cope with pain. It increases my pain. For everything I do I pay in more pain. I’m also not fully present in the moment, which I truly believe if a waste of their time. If I’m zoning out then that’s not fair. They’ve gifted me with their time and energy and I’m unable to honour that.

That’s probably the hardest part of my circumstances. Not getting quality time with loved ones. Or certainly not enough of it for it to be as meaningful as my soul needs. A couple of hours every couple of weeks is just not nearly enough for me. But a couple of hours every other week is also so vital for me right now. I’m so grateful for being able to have even just that. So while it’s not as much as I’d like, it’s enough to keep me going right now.

I realised today as I was going through my old phone backup that I’d lost all my notes from my previous phone. I switched backed to iPhone in January and I’ve lost everything from before then. Aside from photos, which are the most important. I never thought to check that my notes transferred. So I’ve lost all my journals from the last 3 years. Which are arguably the most important journals of my life. 

I started my journey healing my mental health 2 years ago and I became ill and started a whole new journey just over a year ago. 

As a result I was going through places where I knew I’d posted things I’d written. My instagram, one main Facebook post and a fair few posts and videos on a peer support Facebook group. These are the ones I want to talk about. The start of my mindfulness journey, about 6 months of talking about myself and also posts and videos in the aim of helping others. Videos about me, things that I’d implemented to help me cope day to day and things I was learning through reading and podcasts. 

I learnt a lot, including a lot about myself. A chuck of which turned out to be wrong. Reasons why I thought I was where I was. In some cases I was wrong, in others I’d barely scratched the surface. Like for instance I was told the sole cause of my menty b was an imbalance between the left and right side of my brain. It’s a thing but I was absolutely not my thing.

See I turned to mindfulness and meditations to help me find a different path to peace, having realised suicide wasn’t the path I truly wanted. And I still practice mindfulness and meditate daily, it’s a lifelong journey and a powerful tool. But I believe it can also be dangerous when done incorrectly. That’s not to say I skipped a few pages in the instruction manual, but I think when starting a journey of mindfulness and especially starting meditation that it should be done with guidance. Because following 6 months of meditation, occasionally guided but mostly self meditation, I then got put through an NHS CBT online course. And the combination of these things brought me right back to where I was when I was stood on a cliff in a huge storm.

The mind is a powerful place but it can also be dark. Meditating alone, with zero guidance can be terrifying. Without the right tools to cope or process what comes up, all you’ve done is rip open an old scar with no way to stem the bleeding. If you get what I mean. (I didn’t want to say Pandora’s box, it seemed a bit cliche.)

Maybe at some point I’ll put up some of these writings or videos. The ones that I stand by now possibly. Or maybe the ones I don’t too and I can then highlight alongside the corrections or growth I’ve made. See there’s nothing wrong with owning something you got wrong. We’re evolving creatures in many ways, but our views and growth spiritually are the important part of that. Views change, ideals change. Likes, dislikes, opinions change. Heck even our damn taste buds change, but we’re not afraid to admit that are we? Because no one wants to eat something they no longer like. Equally, you don’t have to continue doing things or being someone that isn’t true to your current self. 

Morning, afternoon or evening.

In my last post I wrote about my therapist and I discussing my purpose in life and how to fulfil that given my current limitations. One way to start that was making my blog onymous. Which is what I am doing in and following this post.

My name is Chloe. I also go by Chlo, or Button, if you’re my mum, on account of standing at just 5ft tall. I’m a 29 years old woman who worked as an engineer, competed internationally as a powerlifter. I’m a daughter, sister, best friend and pain in the arse and for these I am proud. For everything I have achieved, endured, conquered and learnt I am proud. With these things I hope to help others.

What I am now is a young woman disabled by a chronic rare illness. Who now spends the bulk of her life confined to the four walls on the house, led in dark rooms. I am still the same person as the first woman, though now I have different knowledge and experiences than before. My existence has changed significantly, along with my quality of life. But I’m still me, inside my soul. I have the same fire and fight to achieve things, though now those things are to survive and find a treatment that works to get my old existence back. Also, when I say survive I don’t mean my condition, I’m not dying. I mean to survive the mental battle it’s brought me into.

My current hobbies include staring at walls, reading my kindle and waiting for bedtime. Most days I have coffee with my dad, I now live with my mum who also kinda cares for me and does the things I can’t. I have a dog, Bella. I’ve had her 9 years and she’s been by my side nearly every night and day of that. I think I’ve only spent a week in total apart from her in all that time. She’s the light of my life and my unofficial therapy dog. Though she does join me in my therapy sessions too.

The main condition that has brought me to where I am is called Hemicrania Continua. It’s as it says on the tin, permanent head pain on one side. I’ve had it since December 2015 and I’ll discuss my journey with this more in another post.

The other main issue I have is depression. This started many years ago and went ignored by me. I thought I just had seasonal depression as I’d usually be a bit lower around Christmas time. This was a lie. I didn’t know I was lying at the time if that helps, I like to think I’m an honest person. My depression got pretty bad late 2019 and the following year was when I really started trying to heal. Again, I will continue that part of my story in another post, because I think it deserves its own page. It’s a very important, wavering and beautiful journey.

So there you have it. That’s me. That’s my bullet points…my rather long bullet points. Now I’ll pad them out bit by bit, with various other little nuggets in between. There may not be a sequence to my posts, as I said before, I never write with an agenda or destination. But I’ll share as I write so you can be as surprised by what’s comes out as I am. Though I expect I will keep my more private writings to myself, to share absolutely everything would leave me feeling to vulnerable I think.

One day you will tell your story of how you overcame what you went through and it will be someone else’s survival guide.

My therapist asked me today what I think my purpose in life is. What, outside of everything else going on, do I think I’m here to do.

“I’ve always felt I’m here to help others, that I can and need to.”

And I have. Whether that’s been in the gym helping with technique and basic plans from my experience. Whether it’s been asked for or not. If I’ve seen someone in the gym who could use help with technique I’ve approached and offered to help. It’s why I wanted so badly to join the army or police, because of the burning desire to help someone or something else.

It’s why I sat crying in my therapy today because with everything I’ve got going on right now, friends and family have avoided venting or coming to me with issues. And how I feel so detached from everything and everyone. Because they don’t want to dump anymore on my plate. But they aren’t. It makes me feel normal when they do come to me for a listening ear or advice. It makes me feel like I’m fulfilling, in some minor way, my purpose. To help others. Of course I’d rather them not have things that they need to vent about, to not have things troubling them. But it’s all just a part of life. For me it’s part of any fulfilling relationship. whether that’s with friends, family or spouses. To be able to bare all with each other, to be there through the good, the bad, the ugly. That’s what I want in relationships, to be there for it all.

So if you’ve read any of my previous posts you’ll know things aren’t too rosey for me right now. If you haven’t read them don’t worry about going back. I mean you can if you want to, it’s not forbidden. Just don’t feel like you’ll be missing out if you don’t because I’ll be discussing it in new posts.

I’ve kept an anonymous blog for a few years and have very rarely posted until recently. I cleared all of my old posts, which were mostly related to a previous job of mine. In the last few months I’ve put a few posts up, but mostly I write in the notes on my phone. It’s where this post started.

The notes on my phone is my safe place. My sanctuary. To write whatever and whenever I need to. I write with no destination and no idea what’s going to end up written on the screen. I find it so cathartic so it has its purpose.

But my therapist asked whether I’d consider changing it from an anonymous blog, for all to see. Because while writing has its purpose for me it could also help fulfill my purpose of helping others while I’m not physically able to help them. I’ve had a hell of a journey, as anyone has. But from that I’ve gathered a lot of experience and knowledge. Experience and knowledge that if shared could help others, or that’s the hope at least.

So that’s what I’m going to do. I’m going to disclose my identity and take you through my journey. My fingers tend to go into overdrive once they start typing so apologies in advance for all future tangents and dissertations.

There’s something that Denzel Washington said once:

When the devil ignores you, then you know you’re doing something wrong. Conversely, when the devil comes at you, maybe it’s because you’re trying to do something right.

I can only assume I must have been doing something really good a year ago. Some saint like action that got me noticed by the devil.

I wake up most days now and wonder whether I can make it to the end of the day. Or go to sleep with some part of me hoping I won’t see morning. To live in this state of constant, chronic, all consuming, debilitating pain, it’s exhausting. It’s wearing me down. Chipping away a little bit more of what made me me with each passing day. There is no cure for my condition. And while I wait around to trial some other new, experimental treatment to try and get my pain back to a manageable level, I have to somehow find a way to make it through to the next day. That’s how I do it. One day at a time. I can’t see my future. I can’t plan for tomorrow or next week or even 6 months from now. I just have to make it through one day. And then one more day, and one more after that. I force myself to do at least one thing a day, whether it’s properly washing and putting products on my hair or washing up, or even just getting my dog out for half an hour. I have to do something to give me a sense of achievement and a sense of hope. That’s all I can do, is somehow search, find and hold onto any tiny form of hope I have.

I know I mentioned this briefly in my last post but, when I saw my surgeon he detailed the final 3 treatment options I have. 2 of which are quite unlikely to work, and one which has shown good results in studies. But it’s an expensive, invasive, permanent device put into my head and attached to a pacemaker. And I remember him saying “we’re nearly at the end of the road of what we can do for you. But these final 3 treatment options are 3 lots of hope’. I was mad, I mean steam coming out the ears, shaking with silent tears mad. I was mad because I saw, and see the first 2 treatments as me jumping through hoops to get to the treatment that is most likely to help me, but is also going to cost the NHS a lot. That the NHS will have to seek funding for from the local primary care trust. But is most likely to help. So when he said there’s 3 lots of hope, I hear ‘you’re going to have to trial these other treatments which will likely mean a further 4-5+ months of increased pain due to bad reactions to the treatment before we try the one that could work’. I hear you’ve got a long wait in more pain, he sees hope. And I really could see any hope at the time. Because I went to that appointment thinking he was going to schedule the surgery. Instead I was sent to the first treatment; Botox. I look very youthful but boy am I in even more pain. I used to think I had 10/10 pain days, but I got introduced to a new 10. And I see that new 10 at least 4-5 days a week.

And in that new 10 I have to somehow fight through it and find the hope that will get me through to tomorrow. Hope comes in many forms for me. Each day I must find a purpose, some sense of achievement. Whether that be washing up, walking my dog or having coffee with a family member or friend. Some little bit of normality to spur me on. Those are my cheerleaders, particularly my family and friends who are undoubtedly affected by my illness as much as I am just in different ways.

As I’m coming up to my 29th birthday I can’t help but reflect on the fact that I am in the scariest time of my life and absolutely not where I planned to be. 

Having a chronic illness or disease can make navigating normal life much harder. It started with migraines when I was 13 and just continued. From age 14/15 I started struggling with joint pain and at 20 I was diagnosed with joint hyper mobility. My migraines continued regularly and I’ve had many scans, medications and treatments over the years. I’m 2015 I started getting debilitating shooting pain down one side of my head. This went from 30 second bouts to waking up one day and it was continuous. After being put on max dose tramadol and not being able to cope I paid to see a neurologist who diagnosed me with Hemicrania continua in 2016. By the way I was still working full time and also studying for my HNC. 

After a while of finding a medication balance I was able to continue living a normal life for the most part. I started weight lifting to gain muscle to support my joints and all joint pain was fixed and over the years I went on to compete internationally as a powerlifting, taking trophies and titles. 

Fast forward to 2019 and I tried to take my own life. Dealing with all of this pain over so many years and childhood trauma and abusive relationships had taken it’s toll. And please don’t read into the childhood trauma too much, I had a wonderful childhood, but situations out of anyones control taught me lessons that proved damaging to my adult life. 

But obviously I didn’t succeed, to my relief and the relief of those around me. I healed, I paid and continue to pay for therapy to navigate adulthood in a much more productive way while being true to my real self and my inner child. 

16th June 2021 I got the Pfizer vaccine. 17th June 2021 I woke up and my Hemicrania continua was out of control. I tried everything. I increased my medication to 6 times my usual dose, I added other medications. I got nerve blocks. I had neurosurgery. And I’ve recently had Botox. I’m nearly a year down the line and my uncontrollable pain continues to rule my life. In that time I haven’t been able to work. I haven’t been able to train, which means my joints are back causing me more pain and mobility issues. I don’t get to walk my darling dog Bella much. I don’t get to socialise and exist in any meaningful way. While the world has come out of lockdown, my lockdown continues. I am stuck in a perpetual loop of eat, meds, sleep, meds, eat, meds, sleep. Repeat. 

I’d never wish my situation on anyone but just for a moment could you imagine this? Being in so much pain you can’t think or concentrate or even sometimes move through it. Lots of people have or know the extent of migraine pain. This often helps put things into perspective…when I get a migraine now, I don’t take any of my medication to treat it. As the pain from a migraine is far nicer and easier to cope with than the levels of pain from my Hemicrania. My current daily pain levels vary from a 7-10/10. Constantly, hitting a 10/10 every damn day. 

So as I approach my 29th birthday I am applying for benefits and PIP (disability). I have now lost all of my income and have no way to cover my basic living costs or pay any of my debts. Yes I have debt, and I wish it wasn’t such a dreaded thing to discuss. But so many people have or have had debts and it shouldn’t be shameful. Especially given current rises in cost of living with zero increases in income. I digress. So anyway, I am now forced into selling my car, which I absolutely love, all because I am drowning. Drowning in pain, debts, stress and worry constantly. Forced into selling my last bit of freedom to pay off my debts, so that I don’t face court proceedings or have my credit score ruined all because I got an illness. I got an illness and took a jab to protect my loved ones. And in doing so had my life ripped away from me. 

How did my life come to this? How did a successful engineer who designed buildings suddenly end up in this disaster? It’s no fault of my own, it’s just a thing that happened and it sucks. But something will work out, of that I am certain. I don’t know the how, when, where or why but that’s just how the universe works. In all her mysterious ways.

Grief is a funny thing. Most people associate it with the loss of a loved one and everyone processes it differently. For some it’s all consuming and others it can come in waves or even be delayed and suddenly hit you.

I am currently grieving my own loss of a loved one. I’m grieving the loss of myself whom I loved dearly. Since getting ill 11 months ago after my Pfizer jab with every passing day, week and month I’ve lost a little more of myself and what made me me. I’m grieving the loss of my life, though I’m still here living and breathing. I’m a different me. The me I am now is in permanent pain, often unable to get out of bed and do normal daily activities like cooking, cleaning and some days I don’t even have it in me to wash. There I said it. Call me stinky Pete.

I’ve lost a lot in this time. I’ve lost the ability to care for myself fully. I’ve lost the ability to continue powerlifting or any form of exercise. I don’t get to finally break that squat record I was ready for and had to back out of representing GB at the world championships. I’ve lost the ability to socialise to any meaningful extent. I’ve lost the ability to support those around me. Possibly the most hurtful one is that I’ve lost ability to walk and explore with Bella for more than 30 minutes 1-2 times a week. I don’t get to go to the beach with her, I don’t get to drive her to her favourite place in Frome, I don’t get to celebrate birthdays and other special occasions. I don’t get to make plans because every time I need to cancel another part of me breaks a little more. I don’t get to be excited for future events, because I don’t know that I’ll be able to be there. I don’t get to sit in the sun or just enjoy and evening bbq or sunset wine with my friends. I spend 80% of my life stuck in a dark room. I don’t get to work. I don’t get to drive much. I don’t get to live. And I have to accept that I require help now, from friends and family who help care for me and cover the things I can no longer do for myself.

I’ve had neurosurgery, nerve blocks, Botox, 5 different medications and the specialists are running out of options for me.

I am stuck in this state of sadness and grief for what I was, who I was and what I had. For a life lost. The little things that I most definitely took for granted are now pipe dreams. Imagine just for a moment being bed bound for most of you days and trying not to wallow in pity, grief and depression. When the tools for battling these things aren’t accessible to you. You know the usual good food, outdoors, fresh air and exercise , and surrounding yourself with loved ones. Doing the things you love. My only accessible tool is paying to put myself through private therapy every week.

I honestly don’t know how I’ve got this far, but I have and so I’ll continue to fight. Just 2 years ago I tried to commit suicide, but some how now, through all of this I’ve got the strength to fight and not allow myself to reach that point Because for all I’ve lost the odd occasions where I get a day where I am able to spend even just an hour with friends and family are worth their weight in gold. They power me through this period in my life. I have two more treatment options left ahead of me. As my surgeon said “that’s two lots of hope”. I was so mad at him when he said that, because how the hell can he expect me to have hope left. But I do, I have to. I have to find that within myself every day because what if one of those options allow me to rebuild myself and the life I had.