Read Part 1 and Part 2 of my story.
As you’d expect, my work life wasn’t the only thing to suffer from my illness. I also had to end my relationship and stop hanging out with my friends so much. I had learnt how to hermit pretty quickly and I was actually pretty happy to be on my own. I still had all of my internet friends to scratch my social itch, and I never really felt like I was missing out on anything by not being able to physically hang out with people.
It wasn’t until my bestie at the time came to me with a request to see how many creepy older guys messaged me on a particular dating website to confirm whether he just attracted them or if it was a thing they did. I did and it definitely was a thing they did. But while I was there, I decided to have a look at what was on offer. I was upfront about my ~situation~, and somehow stumbled upon the man who is now my husband.
With his help and encouragement, I started university the following year. For my first semester, I attempted to go it alone and avoid using the disability support services, but when I had to drop a paper due to the workload being a little too much for me, I realised I had to suck it up and take advantage of the support available to me. It didn’t prevent me from turning my 3-year degree into a 4-year one or my 1-year post-grad and graduate qualifications into 2-year ones, but it was absolutely worth it!
Over my first year of university, I managed to get a semi-decent handle on my fatigue and my social life didn’t suck too much, but I did find myself in a lot more pain. Naturally, I went in search of help for that and of course, the doctors weren’t very helpful. So I started seeing my mum’s chiropractor who she’d been seeing to manage a back injury she suffered as a kid. He was the one to suggest fibromyalgia as the cause of my pain which I took to my doctor and after some research, she agreed with that diagnosis. I was diagnosed in late 2009.
My next diagnosis didn’t come until 2013 when, during the second year of my postgraduate qualification, my brain decided to drop out on me a few times and cause me to have seizures. The specialists couldn’t work out exactly what was up, and I was diagnosed with idiopathic generalised epilepsy. Idiopathic means “from an unknown cause” and generalised means my seizures were coming from my entire brain, not a specific lobe.
Thankfully, epilepsy is probably my least problematic chronic illness. I have both tonic-clonic (convulsive) and absence (brief loss of consciousness) seizures, but they are very few and far between and no longer need to be medicated. I have not had a tonic-clonic seizure since 2016, and my last confirmed absence seizure was in 2020. I rarely think about the fact that I even have epilepsy!
My next diagnosis was made in 2014. I had problems with urination right from the start of my illness, but I never considered that it was a separate problem until I had to see a urologist after a particularly nasty urinary tract infection. Even after a urethral dilation to remove a small amount of scarring that they suspected was causing the pain, I was diagnosed with atypical interstitial cystitis. Atypical because most of my symptoms were urethral and not in the bladder.
A year and a half later in 2015, I was diagnosed with sebopsoriasis, which is psoriasis that presents a lot like seborrheic dermatitis. I thought I just had terrible dandruff, but when it started to move down onto my face, I got it checked out. Since this diagnosis, I was also diagnosed with regular ol’ plaque psoriasis when patches started to appear on my legs. I also experience somewhat frequent bouts of guttate psoriasis, which are small dots of psoriasis.
My next diagnosis came in 2018 when I was having a pretty good run of health and I considered the possibility of having children (lol!). I came off my progestin-only birth control which took away my periods. When my period returned, I discovered that my BC had been masking symptoms of what I can only describe as pure agony. I went straight back on the BC and an ultrasound confirmed that I had Stage 1 (mild) endometriosis.
However, I recently had an ultrasound that showed that I no longer have endometrial tissue where it’s not supposed to be so I may actually be endo-free! But for now, the diagnosis still stands and I still need to be on the birth control which I’m not entirely mad about. I just worry that it may be contributing to my other health problems sometimes.
The next diagnosis in my ever-growing list of diagnoses was psoriatic arthritis later in 2018. I experienced incredibly intense hip pain that was unusual for me, so I had it checked out and they found arthritis in my right hip. I also have it in the toes on my right foot, and for some time, I thought I also had it in my shoulder, but I’ve come to realise that’s a separate issue. Thankfully, it only seems to bother me when I overuse the joint or if it’s particularly windy so it’s manageable.
Next came my diagnosis of chronic sinusitis in 2021. I started to experience mild but still quite debilitating sinus pressure in 2020 that never went away, even with steroid treatment. I had numerous scans and tests for this, but they only found mild inflammation that should have responded to steroid treatment. I have just come to accept that I might always be a stuffy-headed, drippy-throated woman.
In March of 2023, I caught the ever-wonderful COVID, and unsurprisingly, I did not recover well from it. In addition to worsening ME/CFS symptoms, I also started to experience heart issues, hearing loss and neuropathy (nerve pain). My doctor unofficially diagnosed me with long COVID, but I was cleared of any serious heart issues after a holter monitor test (but I still suspect some form of orthostatic intolerance, most likely positional orthostatic tachycardia syndrome (POTS), but my doctor doesn’t agree and won’t send me for further testing).
The hearing loss was tested and I was found to have temporomandibular joint dysfunction (TMJD) which causes inflammation and the blocking of the eustachian tube in my ear, which means it couldn’t drain properly. Add my chronically inflamed sinus cavities to the mix and a full ear is definitely gonna feel like you’re going deaf! This was a surprising diagnosis though. My jaw is one of the few joints that doesn’t often hurt, so hearing that it was inflamed was interesting.
I’ve not had any testing done for my neuropathy because I had to fight my doctor to even consider that the pain I was experiencing was different to my regular fibromyalgia pain. After checking for diabetes and a B12 deficiency, she trialled me on a tricyclic antidepressant for the pain. After only a week, it really helped to lessen the pain, and I was given a diagnosis of peripheral neuropathy (nerve pain in my limbs).
I am currently waiting to see a specialist about potentially having binocular vision dysfunction (BVD), which could also explain the chronic sinusitis and the dizziness I often experience that I associated with the potential POTS, amongst other symptoms I always just assumed were part of one of my other illnesses. I’m looking forward to finding out for sure, and getting the pretty simple fix of prism glasses!
This entry was a bit of a long one because of all the damn diagnoses I’ve received since falling ill, but now you know what I’m up against! The next part of my story will be about my ADHD diagnosis, which I have already spoken a little about in my first entry, but it’ll be a little more in-depth. See you soon!
PLEASE NOTE: I am not a medical professional. Any information or advice provided in this entry is for general purposes. Please read the disclaimer for more information, if you haven't already done so.