Facing the Inevitable
(With All the Grace of a Skid Mark)
This post concludes my three-part journey to a diagnosis of M.E and POTS. Amazingly, I was STILL hopeful for a magic pill or something to make me better.
You can read Part 1 at Journey to Diagnosis – Part 1 – chronicallycraptastic.com, and Part 2 at Journey to Diagnosis – Part 2 – chronicallycraptastic.com.
Now, where was I? Oh yes, head hung low and tail between my legs, I was about to face the inevitable:
(Eight months after becoming noticeably unwell)
By this point, I was hyper-sensitive to noise and spent much of my days in silence, as partaking in conversations, listening to music or watching TV was too overwhelming for my senses. I was 90% housebound, and needed an electric wheelchair on the rare occasions I could leave the house. Speaking was becoming increasingly difficult and I would start talking in whispers when my voice box became too fatigued. I could no longer care for myself. I was now officially disabled. Things were now dire.
The criteria for a diagnosis of M.E is that all avenues for finding a different, medically treatable diagnosis have been exhausted. As far as my GP was concerned, this was now the case. I finally had an answer – M.E. It just sucked that, having researched this condition during my obsessive googling, this was the one diagnosis I’d been dreading the most.
And the prospect of this (M.E) is absolutely and utterly terrifying, due to the complete absence of a medical treatment or cure. So, I… prepare myself mentally for the potentially very long road ahead that could last months or years to re-gain some semblance of my life and health back. Albeit from what I’ve read, my life is unlikely to ever be the same again, given how active I was before I became unwell.
And I was right – my life has never been the same again.
It’s really hard to mentally prepare for something like M.E, because despite being incredibly prevalent in the population for decades, not to mention highly debilitating, it has received little to no government funding for research to establish a cause or treatment. Some patients are incorrectly prescribed graded exercise therapy (GET), which has been proven to cause serious damage to people with M.E. Otherwise, patients are told to pace their activities and rest, and are pretty much left to deal with it on their own – and in a small percentage of very severe cases, die. In a nutshell, there is NO treatment. Understandably, that was a hard pill for me to swallow – in the absence of any medically sanctioned ones. Cue, a return of frustration and passive aggression from 2017 me please!
So, now I’m left wondering, “what caused my potential M.E?” … it’s only been around 30+ years since it was first properly recognised as a genuine illness in the 1980’s. It’s not like researchers have had very long to figure it out (bullshit), or much funding to do so (sadly true), and it’s not like I have anything better to do with my life anyway while I wait patiently, isolated, often housebound, and grieving for my old life. So, let’s give the poor bastards a break, and all have a nice hot mug of fuck this shit, and procrastinate for another 30 years. Excellent.
Clearly, I felt angry and let down by the system. Most other illnesses, you go to the doctor, they do tests, tell you what’s wrong, and formulate a treatment plan to manage or cure the problem. And that’s because scientists were awarded the funding necessary to make this happen. So, why not M.E? I had been so happy, fit and healthy before this. I really was left thinking, “why me?” – in every sense of the spelling.
Meanwhile, I was very lucky to find a different GP within my surgery who actually knew about M.E, and was more than willing to work together to try and get me some answers and relief from my symptoms. I could have kissed her – if I’d had the strength; God knows I needed all the support I could get. My new GP prescribed me a variety of medications to help with my sleep, and anti-nausea medication. She was also willing to try out B12 injections – as these were recommended in a book I’d found about M.E. In it, the author – a GP with a special interest in M.E, indicated that B12 injections had been found to bring some relief to a subset of M.E patients, irrespective of whether they were B12 deficient. Seemed a little ‘out there’ to both my GP and I, but ultimately harmless – so we gave it a go.
Just a little prick… (me, that is):
Here I am, with my first B12 injection to be administered daily. Only a complete desperado with highly unrealistic optimism (‘Me! Me! Oh yes that’s me!’) could ever look this happy about the prospect of daily injections – especially in the absence of a guarantee that it will have any positive effect on their health. I really wanted to believe that it would help, and told myself it was bringing me a tiny bit of relief. But I was kidding myself. It made zero difference. Needless to say, I’m not taking it anymore.
Also, I’d started waking up in the night on occasion with a completely numb arm, as if someone had been sitting on it (maybe Pete’s idea of nocturnal fun – but thankfully I doubt it), and I was experiencing a general continued weakness in my left arm – for example, holding a bowl of cereal was too heavy. To the best of my knowledge, I was holding bran flakes, not bricks. These things led my new GP to refer me to a neurologist.
This consultant acknowledged some overlap in my symptoms and those of Multiple Sclerosis (M.S), and arranged a scan to investigate this. The results ruled out M.S.
However, they did show up one anomaly in my brain; an area of ‘altered signal’ in my pituitary gland. The report said it was most likely caused by a prior haemorrhage (so THAT’s what the massive fuck-off headache that wouldn’t quit 11 months ago was. Who knew?) So yes, a brain haemorrhage – excellent news! I was totally up for that. Or at least, I was if it would give me answers different to M.E, and a solution. I wondered if that would also explain my ever-increasing sensitivity to noise, and tinnitus so loud that it actually woke me up on occasion in the middle of the night, like the after effects of standing right next to the biggest speaker at a Foo Fighters concert. Riiiiiiing! Piss off Dave, I’m trying to sleep.
High hopes, and another Endocrinologist…
(Ten months after becoming noticeably unwell)
I had high hopes the altered signal from my haemorrhage would be the true answer to my problems, and that I didn’t have M.E after all. However, a follow-up appointment with another endocrinologist resulted in more disappointment. The haemorrhage may or may not have been the catalyst for my M.E, but it certainly wasn’t responsible for my complete demise, according to the consultant. A follow-up scan a year later confirmed the altered signal had dissolved and disappeared – along with my hopes of ever getting my life back. (But not before this):
And the shamefully unrealistic optimism 2017 award goes to…
The consultant endocrinologist may not have been concerned about my brain (perhaps he should have been – but for different reasons), however, he did prescribe some medication for my knackered thyroid. I got excited about this – as you can see from the picture. Again, I hoped that maybe THIS would be the answer to my prayers – despite being a very low dosage. The consultant very much doubted it. Sadly, he was right.
So that was that. I had M.E, and I finally had to accept it.
Back to my GP…
My relentless M.E research highlighted a condition called Postural Orthostatic Tachycardia Syndrome (POTS), which is commonly diagnosed among people with M.E. I instinctively knew from reading up about it that I likely had it, as I seemed to meet the criteria (unable to stand up for very long at all without feeling very lightheaded, nauseous, and like I need to lie down before I fall down). I also bought a blood pressure machine which told me that my heart rate was definitely higher than it should be when I stand up, and my blood pressure drops too low. These were all signs of POTS, albeit not everyone with POTS has low blood pressure – I just drew the short straw. Go me. So, my new GP – who was familiar with POTS, also referred me to a cardiologist with a special interest in it, that had been recommended by an online M.E support group that I follow.
At the time of my initial appointment, I had just discovered I was five weeks pregnant (don’t judge me and I won’t judge you – deal? Excellent. Nice doing business with you.) He was a lovely man who agreed that my inability to stand up for long, various other symptoms and my abnormal heart rate and blood pressure – was most likely POTS. There is a lot of overlap between the other symptoms of POTS and M.E, like the crippling fatigue, brain fog, and nausea, to name but a few – and to this day I find it difficult to pick apart which is my POTS and which is my M.E. Nonetheless, suspected POTS was great news, because there actually IS a test and treatments for this. Unfortunately, he couldn’t do the diagnostic Tilt Table Test (TTT) for it or medicate me at that time, because of my being pregnant. Now THAT made for 9 months of my life I will never forget; I plan to write about my pregnancy journey with POTS and M.E, so keep checking back.
Thus, I waited until after my baby was born, and then went back.
(Two years after becoming noticeably unwell):
The TTT does exactly what it says on the tin. They strap you to a table (not as kinky as it sounds you may or may not be happy to hear, depending on your preferences!), and tilt the table upright to simulate a standing position – then monitor your heart rate and blood pressure to see what happens. In healthy people, the heart rate increases slightly to compensate for the change in position, but then settles down again. In POTS, it increases excessively (by 30+ bpm) within the first 10 minutes, and doesn’t calm the fuck down unless you lie down or faint (hence the straps). I reached the diagnostic criteria within the first three minutes; I was that severe. And just for added fun, as my heart rate continued increasing, my blood pressure continued dropping. This test brought about all the symptoms I normally experience when I’m upright (light-headedness, nausea, general feeling of major discomfort and impending doom unless I lie down quick smart) – which just reinforced my diagnosis.
I knew by now that a POTS diagnosis was in addition to, not instead of, an M.E diagnosis. And, miraculously, I accepted this. (Give that girl a medal – it only took two years, but I got there in the end). Reality prevails! After all, there is a limit to how long a girl can keep up the relentlessly unrealistic optimism. That said, I wouldn’t be me if I didn’t get just a bit giddy at there being a possibility that I might get even just a tiny bit better. And a POTS diagnosis made that possibility a genuine reality.
Sadly, I don’t have any pictures of a maniacal me posing with my POTS meds. I was hopeful, but by this point, I was back on planet Earth and keeping it real. Plus – I’d been seriously unwell for two years, rendering me disabled, I had a newborn baby, and I looked like absolute shit. A kodak moment, it was not. So here’s a picture taken a year earlier, soon after getting my wheelchair. Despite my smiles, the wheelchair was actually an emotionally very traumatic experience, given how healthy and active I had been before getting ill (again, I plan to write about this experience in a future post). But it was also like a mobility-shaped treasure at the end of a rainbow.
The problem with POTS is that treatment is not a ‘one size fits all’. My cardiologist tried me on several medications of varying doses throughout an entire year, with little success. This was very disheartening, after everything I had been through on my long journey to diagnosis, and the extra year I had waited to start treatment, due to pregnancy. But we persevered, and eventually, found the right combination of medications for me. And I am eternally grateful to that cardiologist.
I had been drowning for three years. And finally, there was a lifeboat. And a rainbow.
Finding the right medication for me hasn’t cured my POTS (because there is no cure), but it HAS been a game changer. Don’t get me wrong, I still struggle every day – BUT, I no longer need my wheelchair, and my M.E has improved – which I am certain is down to my body being under less stress from the additional POTS. I can tolerate noises again (most of the time), engage in conversations, and ultimately – I have my independence and some quality of life back. Well, I do provided I pace myself, and go to bed every afternoon for 1-2 hours and go to bed early in the evenings. But I wont dwell on that, because it’s a small price to pay, compared to where I was.
I’ve been chronically ill for five years now, and it’s been a rollercoaster of emotions. It’s been a storm that just wouldn’t quit. It’s been a complete and utter shower of shit. I’m sure you get the point. But within that, there has been joy. I have been loved. I have been supported. And miraculously, I created life – and a fire inside me to do everything in my power to be well enough to give that life the childhood he deserves. And now – I am calm. I am happy. I survived. I am okay. Better than okay, in fact, because I have quality of life again – just a different kind of quality. And Pete’s existence doesn’t put me off my sleep anymore; he’s bringing sexy back. My life has changed irreversibly, and there are areas where it has changed for the better. I know what is important to the new me, and what I need to do to look after myself. I accept my limitations, and I accept the uncertainty of my future with the fluctuations in severity associated with M.E and POTS. I also accept that I am only this accepting because things are currently going well for me. In all honesty, I don’t think I would hold up half as well as I did for those three years if I was to become so severely unwell again. So, I’m keeping my fingers and toes crossed that I never have to find out.
If I was to share all of my journal writings surrounding the mammoth challenge of getting a diagnosis – you would have been reading approximately 50 pages of my research, chronic obsessing, continual physical deterioration, and all the accessible adaptations and emotions that went along with becoming disabled and largely dependent on others for my care. To say that my search for a diagnosis and treatment was all-encompassing, is an understatement of gargantuan proportions. In a nutshell, I simply would NOT give up on myself, despite this quest becoming increasingly more difficult as time went on and my health continued to deteriorate. My persistence for answers is something I remain proud of to this day – despite the end diagnoses panning out to be rather shit and incurable. My only advice to anyone in a similar boat, searching for answers, is to stay true to yourself – even when you feel like you’re losing yourself. You are still in there, so keep on keeping on, in whatever way you are able. Fight for answers if you need to. Cry if you need to. Curse like an absolute motherfucker if you need to. Importantly, rest when you need to rest. And above all else, be kind to yourself. So, so kind. Your body is trying its best, and it needs your love and support.
Whether you have made it to the end of this post only, or you have made it through all 3 parts of My Story: Journey to Diagnosis, then wow – GO YOU!! And once more, a massive heartfelt THANK YOU from the bottom of my too-fast and palpitating heart for reading.
Thanks for writing your diagnosis story Emma, it really hit home for me.
It sounds like an absolutely horrendous journey, and I’m sorry you’ve had to deal with it.
Thanks also for your humour and for expressing the emotions you felt clearly. Living with ME can be bleak at times and it’s great to hear other people’s stories and know that there’s a community with similar experiences, but it can also be very depressing when everything becomes about illness. Your writing has a great balance between honesty and openness whilst also appreciating the good times. It’s cheered me up – thank you!
Hi Matt, sorry it’s taken me so long to reply. I’ve only just seen your comment now – it must have got lost in the system somewhere!
I’m really happy you enjoyed reading my diagnosis story, and that’s really great to hear that it resonated with you and cheered you up. That is definitely one of my aims with this blog! Since you enjoyed reading that, you might enjoy my other similar style posts in the Longer Reads section of the website. Also, feel free to subscribe (option is on the home page) to get new posts delivered straight to your inbox. Regardless though, thank you for reading my story and for letting me know you enjoyed it. I really appreciate it 🙂