Rock Bottom or Waking Up?

“Rock bottom is the end of what wasn’t true enough. Begin again and build something truer” – Glennon Doyle

Seeing the above quote took me right back to 6 years ago. 6 years ago this month.

Rock bottom to me at this time, was finding myself disabled. Disabled by an illness I’d told doctors I’d been living with for 20 years.

Rock bottom was physically being unable to get out of bed to drag myself into work.

Dragging myself (and I don’t use that term lightly) was something I’d been doing for the 2-3 years prior. I was struggling in all areas of my life. Suffering with mental ill health as well as rapidly deteriorating physical health.

If you’d have asked me what rock bottom had been before then, I would have thought it to be the breakdown I’d had in 2016 (Baring All About the Breakdown is my highest read post to date).

But, really, as I came to learn through a poem written by Rebecca Campbell, that was just a ledge. I still had a long way to fall from there.

I won’t go into it too much as I reference this period in time and what happened after rather a lot. However, I do want to talk about the end of what wasn’t true.

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What was no longer true for me was that I could no longer give off the impression I was functioning. All when, for so long up until this point, I was barely surviving.

I could no longer pretend I was “good thanks” (always my go to response when asked “how are you?”) when the truth was I hadn’t felt well in a very long time. I’d even go so far as to say that I didn’t even know what wellness was. Nor what it looked like, felt like. I’d been extremely unwell for 3.5 years. Burnt out for 18 months before that. Living a life of fatigue for the 5 or so years prior to that! And unbeknown to anyone, living with the world’s most complex neurological disorder for 20 years.

I often describe the portal of time I am referring to (back in 2018) as the point where I ‘woke up’ to what I knew to be true.

There is a lot of wisdom in your own truth - whether someone else sees it or not. (Photo by Zdeněk Macháček on Unsplash)

I knew I’d been living with migraine since 1998.

I knew the pain was severe and I had a high pain threshold (not the low one my neurologist told me I had, because, well the textbook said so).

I knew what had caused this level of agony. It later turned out I worked this out decades before the medical field did.

I knew my body was screaming at me to stop.

I knew I needed to make changes. As fearful as I was and had become.

I knew stress was killing me.

I knew “something big” was coming, I just didn’t know quite what.

I knew there was going to be a loss to my income.

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In some respects, I had been listening. Especially to the bit about money.

I put myself on a shopping ban some 3 years earlier. I’d cut back on beauty treatments and hair appointments. I switched supermarkets. I scrimped and scraped and squirrelled money away.

When things began to crash further around me still and the “something big is coming” was showing signs that, yes, it definitely was, I got a lodger. (The states he saw me in btw).

As a side note, not one person has asked me how the hell I’ve managed to keep a roof over my head all this time. I recently became aware that I haven’t made this kind of check in with anyone else myself – either in the past with single parent mothers who receive little to no support from their Dad and may also face illness to boot. Nor a recent friend who received a stage 3 cancer diagnosis and had to take 6 months out of her self-employment for treatment. Though I had this conversation with her recently and let her know my short fall here and asked her, but only after she had returned to work.

This is something I’d noted about my own personal situation for a long time. Though I’ve only recently noticed that I have also been that person who hasn’t thought to check in, see how that friend, colleague, loved one is doing financially. It’s hit home to me more recently following assumptions that because I am now hosting game-changing retreat days that I must be earning a lot of money.

Due to the restructure of my business, letting some of it go and honouring my needs first whilst making an incredibly huge amount of space for work I don’t (yet) get paid for, the reality is I’m earning less. This is entirely my choice and is in full alignment for me so I am entirely comfortable with this (healing money stories was high on my agenda last year. Money no longer bears any relevance of what success means to me¹). I feel like I’ll be writing more on this in the future so I’ll park this here for now.

Back to where we were

In the months leading up to waking up to what I knew to be true, I began to research what I was now finding myself misdiagnosed with; tension headache.

I was suffering so much mentally that I’d given up telling medical professionals migraine was what it was. This was 17 years and many countless trips to many different doctors (repeatedly saying the same thing) later.

At this time, I was repeatedly being told it was “just a tension headache”. All as I struggled to drag myself into the building in the first place and could barely stand or even sit up. It was at this point in time that I began to research what it was to try and make sense of what the hell was going on.

Luckily we benefit from the invention of the smart phone nowadays and a quick google search told me instantly that what I was enduring was not what I had been diagnosed with. (Photo by Becca Tapert on Unsplash)

“It says here that you can function with tension headache. I am not able to function.” I shared with the next in a long line of doctors I saw.

Its only upon writing this that I realise there had been no exploration of my ability to function at any one of the many multiples of appointments I was attending, all at an increased rate to ever before. If there had been, it would have been discovered that I was not functioning and that what I was living with was very serious - impacting all areas of my life. A serious illness that I had been overlooking and keeping between me and the doctors myself, that is, until it began to impact my work.

Still, my rock bottom enabled me to wake up to the truth that what I was living with - had for decades been living with - was very serious.

The World Health Organisation (WHO) had acknowledged this in 1999 – around the same time my trips to the doctors first began, but there was something very much a miss in between.

“Easy to diagnose” the last doctor said in 2017 when I took my findings and she confirmed “no it isn’t tension headache, it’s migraine”.

“I will refer you to the hospital, but they aren’t sympathetic to migraine. You will need to take 4 different types of medication first”.

We both completely overrode the fact my body was saying “no no no!” to taking medication.

By this time, I was beyond desperate and I still clung on to the belief that they were there to help me, to get to the root of what was going on and support me back to wellness.

I wasn’t listening with any level of presence when she advised the hospital to be unsympathetic to migraine (I was barely clinging on to life). It took a further 5 years to remember this and to really understand the fullness of what this statement meant.

In many respects, I was fortunate (in the end) that I wasn’t permitted to see a ‘specialist’ until after I hit rock bottom. For the first time in my life I was supported by newfound belief

“I matter. My health matters”.

For the first time in my life, I no longer saw anyone in authority over me. A story of “they are right, I am wrong” that had been playing out in my life up until this time came to an abrupt end.

Simultaneously, being at rock bottom got me to the bottom of my needs.

What are my needs?

I needed support. Was beyond desperate for it.

I needed to find a way to generate an income to keep a roof over my head and food on the table. 

I needed time. Someone, anyone to gift me their time.

This level of understanding better enabled me to sit there with courage and confidence to ask

“what support is available to me?”

So when the neurologist replied

“there is none”

It meant I could take back my own power and make a clear and informed decision to no longer pursue the healthcare service as a means to improve, take care of and look after my health (not for this purpose anyway. Of course if I broke a leg - or any other medical emergency for where our healthcare system was able to provide the support I need - A&E is absolutely the place I would need to be. I am still quick to respond to the smear test letter as soon as I receive it. Thankful that we have such a service in place.)

One of the greatest challenges many of us face is our inability to ask for help. Which in many of us, can stem from not understanding what help it is we need in the first place. (Photo by Brett Jordan on Unsplash)

I had initially gone in to see the specialist with the understanding that we would explore my case, my history, understand what happened, agree changes and a way forward.

Not only did this not happen, when I received the typed up notes some weeks later that started with how lovely I was, not one piece of medical information or detail shared with him about the condition or much resemblance to what we had discussed had been coherently documented. The entire letter was error filled.

It was a cold, hard and brutal lesson for me to learn that being nice and accommodating and good was not paying off. In a previous life, on the one hand I was told I was too nice and, on the other, too direct. It was time for me own my niceness and ability to be direct – I prefer it.

Do we not need to see more of that in the world?

One realisation I had during this time was that under the care of the NHS my physical and mental health had continued to deteriorate. Tied in with crystal clear confirmation that they had no support to provide me and couldn’t help me meet my needs. So what was the point of continuing on as I had been for the past 20 years?

I recall my last visit to the doctors, thanking her for the triptans, which had, at one time, been helping – for a time.

Through via a much more educated and understanding lens, I now realise the only purpose these carried out were to enable me to (give off the impression I was able to) function for a good few months longer than I had been able to.

Something I see written about in the chronic illness community is our dependency on medication and pain relief with the sole intention of being able to (give off the impression that we can) function.

It wasn’t until I learnt about medication overuse that I realised the triptans had stopped working and I was taking them out of desperation. That their purpose had been served and it was short lived.

I am grateful for my diagnosis and some of the information shared. Back then, I felt like I did need a diagnosis and it has served me. I will never know where tuning in to what I knew to be true in the years prior to this would have taken me. But I do know that where it has taken me since is beyond what is medically believed possible and I no longer need anyone to validate my own lived experience and what I know to be true.

I am glad too, however, that I haven’t continued along this path to obtain further diagnosis with what I also believe I’ve been living; fibromyalgia, chronic fatigue, tinnitus, anxiety and depression.

The last time I met with a neurologist was February 2019. I haven’t returned to the doctors to talk about any aspect of chronic ill health since. I chose to educate myself and deepen my knowledge and understanding of what I’ve been living with all this time. I learned to drown out the noise around me and tune in to what I knew to be true all along. From this place, I made empowered decisions on what direction, approach and changes to make next.

A suggestion I see frequently made is for us to take research to our appointments and be the one to educate the healthcare professional.

At my last appointment with the neurologist I did share some of the changes I had made to break the chronic pain cycle and the sources of my research, which by that time included the Migraine World Summit and The Migraine Miracle book. There was a junior in the room with us and I hoped and prayed that she was taking note and would go on to share this with other patients long into her career.

On return home, I sent a follow up email to the Neurologist with links to sources, so that he might share these with other patients. Even if just the links, it was so much more than enough to get those in desperate need started. Give them some hope.

I do not see it as my continued responsibility to educate healthcare professionals in this capacity. In the end, I was signed off by the NHS and chose to pursue a path where I felt there was a greater chance of having my needs met (over returning to the doctors for a repeat of the first 20 years). And now that I understand only 1/3 of those living with chronic fatigue are effectively diagnosed when over 2/3 of those of us who are living with migraine disease are also living with chronic fatigue, I am glad I chose to prioritise my needs above all else.

It has enabled me to share my story so that what I’ve experienced, learnt and achieved is accessible to those on a broader spectrum. I share my story with an audience who want to be educated, informed and/or heal. This is my work. This is what I am here for.

What’s your story? What are you here for? (Photo by Gia Oris on Unsplash)

Additionally, What is true for you?

What is no longer true for you?

1. Please note that whilst I am saying that money no longer bears any relevance to success for me, this does not mean that I do not see money as an important factor. I believe that financial health is one pillar of health alongside physical, mental, emotional and spiritual health.