My journey to diagnosis was long, harrowing, all-encompassing, and my health deteriorated throughout. I felt like I was drowning. It was one hell of a crap ride – although I hope my way of sharing it with you is less crap. This is Part 2 of my three-part story. Part 1 can be found at Journey to Diagnosis – Part 1 – chronicallycraptastic.com , and Part 3 at Journey to Diagnosis – Part 3 – chronicallycraptastic.com . So, lets pick up where I left off:
Would the Real Diagnosis Please Stand Up?
Two weeks after my GP had signed me off as ‘unfit to work’, I was still very unwell. I had expected a significant improvement, given I had rested completely, during my time off. So, the doctor signed me off for another 2 weeks, and decided to run some basic tests. At the end of that time, once again I was no better. In fact, I felt like I was slowly getting worse.
I remained signed off work, continued to deteriorate, and started writing a journal. I will share some bits that stand out to me, like this:
I feel like I’m dying. Verrrrrrry slowly. I’m probably not ACTUALLY dying (always a bonus), but still – bit by bit, teeny tiny morsel by teeny tiny morsel, I have been deteriorating…
As time had progressed, it became clear that I was not suffering from burnout. The nausea was a regular thing, as were headaches, and exhaustion unlike anything I had ever known – which was exacerbated by very minor activities of daily life. However, all the basic blood, urine, and stool tests my then-GP had done, came back normal – therefore, making it impossible to establish a quick diagnosis and treatment plan. This was very disappointing, but in my mind, it was only the first hurdle. Surely there were more tests that could be done and/or I should be referred onwards to investigate my nausea further, because something was clearly very wrong with me – and there must be a treatment out there for me. But instead:
… my then-GP… became outwardly frustrated with me and suggested that my condition was psychological. She therefore proposed that she refer me to Adult Mental Health. Her logic being that I appeared very emotional.
Hmm. I had zero resilience by this point, I was so exhausted – occasionally to the point of tears. So yes, I was emotional – I’ll give her that. But with good reason. She had been so kind and compassionate previously – yet now, she appeared flustered and like she was turning her frustration on me, and I could see no reason why. It wasn’t her words alone that unsettled me. What bothered me most was her manner – the way she spoke and her body language suggested she was somehow annoyed with me for my normal test results. And I’ll admit, this is what made me cry. Like I say, my resilience had done a runner, probably lying on a beach somewhere drinking cocktails with my absent good health. Nonetheless, having an ‘emotional’ response to her unprofessional attitude is not grounds for a mental health referral. I am a polite and kind person, but her negative change in attitude towards me, and newfound lack of compassion, care, and frankly, a curiosity and desire to work with me to establish what was actually going on… pissed me right off:
Well, no fucking shit, Sherlock. Yes, I am tearful. I’ve been feeling like utter crap for about 5 weeks now, you don’t have any answers or diagnosis for me, you’re now fed up with the situation and want an easy way out. Meanwhile, my life is on hold for the foreseeable future. My problem isn’t psychological, but I will probably need therapy at some point if you keep up the shitty dismissive attitude, you massive bitch.
For the elimination of doubt – I didn’t actually say that to her face – albeit tempting. I kept those feelings for the safety of my journal (and maybe a little bit of mental role-play to cheer myself up!) I mean, yes, I had a lot to cope with mentally; losing the ability to work, socialise, exercise, basically live the life that I had worked hard for and enjoyed – is fucking hard. BUT, it was a direct result of whatever was happening to me physically, and THAT is what needed addressing. Plus, I felt that I was managing just fine ‘upstairs’. So, I refused the mental health referral and pushed her for a referral to a gastroenterologist to look a bit deeper into my chronic nausea. My request was granted.
I may appear disproportionately rude about her in my writings back then, but that is how I really felt. And, I fully support 2017 me; no feeling is disproportionate when your life and health as you knew it is slipping further and further away from you with every week that passes by, and the doctor you trusted to help you find out why, has decided to give up at what was essentially, the first hurdle. My body was breaking and my life on hold, and I had expected more.
The living with me lottery…
Thankfully, by the time I saw the gastroenterologist, I had left Leeds and myself and Pete found a place to move in together – closer to my work base, to make the commute a lot easier once I was better (at this point it still seemed a certainty to me that whatever was wrong with me was fixable). This was also good news because it meant I had to register with a new GP practice and I never had to see my old, dismissive GP in Leeds again. Pete and I were excited to be taking this next step in our relationship. However, moving in was significant for another reason: it happened earlier than planned, and was due solely to my deteriorating health. By this point, I was struggling to function as independently as I needed for someone living alone, and I needed increasing support with everyday household tasks, and a lot of rest. In other words, I couldn’t live on my own anymore. So, the pleasure of living with me (and I AM a fucking delight!) would fall on either Pete or my mum. Maybe they flipped a coin over it. Only Pete could tell you who won.
The gastroenterologist was kind, and wanted to run some tests. This is how I described those tests at the time:
The consultant arranged for me to have a very painful colonoscopy whereby they blew a fuckload of gas up my bum to inflate my colon all the way up to my stomach (I used to like balloons – until I became one), and then take pictures of it using a CT scanner.
The balloon thing still makes me smile.
He also arranged for me to have a very uncomfortable and nauseating gastroscopy whereby they stuck a camera down my throat and into my stomach while I was wide awake and watching it all on a TV screen.
…Not quite Netflix and chill. It was interesting, but I’ve definitely seen better things on telly.
The idea behind the stomach and colon scans was to establish whether I have a stomach ulcer, inflammatory bowel disease, or anything else untoward happening on the yellow brick road from my belly to my bum. This had especially become an avenue for investigation because by this point, I was not only nauseous, I had become extremely constipated as well. If I got anymore backed up, I literally would have started talking shit.
As it transpired, the results of my scans came back clear. Therefore, I could be discharged from gastroenterology. This was good news for the obvious reason that no-one wants to hear they have abnormalities in their internal machinery, but in a way, it was also bad news. This is because any abnormalities in my gastrointestinal tract would probably have been medically treatable, maybe even curable, and therefore, easier to digest (pun absolutely intended). I left feeling as deflated as my post-CT colon.
The gastroenterologist couldn’t understand the severity of my symptoms, so in a much-appreciated bid to get me some answers, requested my GP run some more blood tests, relating to my thyroid (even though thyroids aren’t his specialty – it falls under endocrinology).
The results showed that my TSH (thyroid stimulating hormone) and thyroid antibodies are high. Not high enough to concern my new GP though. She doesn’t think my results can explain the severity of my symptoms.
I respected this GP’s opinion, so, at this point we started discussing the possibility of an alternative diagnosis – M.E. I was absolutely terrified of an M.E diagnosis, because there is no test for it, and it is not treatable – and many doctors (including my own at that point) don’t understand the condition (I will talk more about this later). Consequently, I was really hoping the answers could be found in my thyroid, and I requested she refer me for a scan of it:
I’ve now had an ultrasound scan which showed my thyroid is covered in little black nodules and cysts. The consultant doing the scan showed them to me and said that healthy thyroids are smooth (ie, not covered in crap, like mine is). She said that combined with my blood results, the scan results are consistent with Hashimoto’s Disease, and that I should ask my GP for a referral to an endocrinologist.
I remember the drive home from that appointment. I was so fucking happy it bordered on delirious. I finally had an answer (or so I thought). Everything that was going wrong with me MUST be down to my thyroid. Obviously, it’s not ideal that this particular organ is dying a slow death, but hey – who cares; it’s assessable and most likely treatable – unlike M.E. Which means I might get my life back on track soon. Hooray!!
He was a nice man, who said:
… he feels confident that my autoimmune thyroid disease is incidental and not the reason I’m so ill. My symptoms are being caused by something else. He can’t rule out M.E, but at the same time, given my symptoms, he feels it wise to do some more detailed investigations to check for other (treatable) possibilities. Which I’m very happy about him doing. My worst fear is that he won’t find anything, and that I have M.E. So, here’s hoping he finds something.
While reading excerpts from my 2017 journal, it became screamingly clear to me just how terrified I was of an M.E diagnosis. I simply could not handle the thought of being so unwell and there being zero treatment for it. So, I started desperately and obsessively googling a variety of alternative possibilities that the endocrinologist might potentially find from his investigations, in my sheer desperation for an alternative diagnosis. At this point, I felt like anything was better than M.E. I was totally open to all possibilities: brain tumour? Sure, why not. Cancer? Stick it on the table. Anything, so long as I knew why I was deteriorating so much, and ideally, what my prognosis might be.
Obviously, I didn’t really want to have a critical illness, but I was so desperate for answers to why I was losing my ability to function, that I would have accepted any diagnosis from Dr Google – whilst awaiting a real doctor to give me a clue.
My obsessive googling for answers DID serve a purpose though:
… It gives me a delightfully misguided sense of control over a situation that is largely out of my control, which ironically, serves as a protective factor for my mental health. Better to feel like I’m doing something, rather than lying around doing nothing and feeling like the entire situation is hopeless.
Okay, 2017 me. If the obsessing is actually helping to keep you somewhat-sane, then you crack on.
It sounds completely fucked up that I was open to such traumatic, life-threatening possibilities. But, to be fair, it had been approaching 6 months by this point, with no diagnosis or treatment, and no prognosis for recovery, and my health was continuing to get worse; the intensity of the crippling fatigue was getting worse, I was struggling with standing and walking relatively ‘normal’ distances, I was becoming occasionally overwhelmed by sound, the headaches and nausea were still frequent flyers – and my sleep had become just awful. I found it so hard to sleep properly, that Pete and I had started sleeping in separate rooms; his general existence would keep me awake if he was lying next to me. And not in a sexy way. Poor Pete.
As it is, my relentless google searching was fruitless; the results of the specialist blood tests the endocrinologist had requested came back normal – so he ruled out any further investigations and sent me packing. My head hung low, and my tail between my legs, I knew what was coming next.
If you want to read what happened next, go to my concluding post Journey to Diagnosis – Part 3 – chronicallycraptastic.com .
As always, thank you so much for reading.