Month: June 2022

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.