My Grains

Ben -

Anyone who knows me, knows that I've been suffering with illness for decades, to the point where I feel like "the sick one" in every social group I'm a member of; it is difficult to detach myself from my health in conversations, because it permeates every single aspect of my life, and my answers to questions often require context, lest I be branded useless or "ineffective", especially at work.

For the ill-informed, my diagnosed conditions are Hypothyroidism, and Hashimoto's. These two alone are particularly debilitating because medication hasn't improved any aspect of my life. The doctors say "Your levels look good!", and are not receptive to the follow up question of, "Then why do I feel like I'm dying?" I have;

  • Persistent headaches which have been steadily getting worse.
  • I'm fatigued every day to the point that I cannot plan my life.
  • I have episodes where I can smell smoke followed by intense head pain, abdominal pain, chest pain, and body-wide muscle weakness.
  • I can't concentrate.
  • Extreme light sensitivity and lingering artifacts.
  • I can't be touched by my fiancé due to sensory issues.
  • I have zero sex drive or desire for intimacy.
  • Despite being on Wegovy (ozempic), eating a lot less, exercising more, I cannot lose weight.

The past couple of weeks have been especially difficult. After a really painful couple of days, I called 111 for advice, which is the non-emergency line in the UK, as my blood oxygen was down to 87% and I had a severe headache and fatigue. I met with my doctor, who completed an urgent referral to neurology for brain, or CNS (central nervous system) cancer. He seemed pretty concerned that no-one had picked up on my combination of symptoms before.

I had my MRI scan earlier today.

I'm now sitting here before I go to bed, wondering what my desired outcome is. One one hand, if I have a tumour, my prayers are answered in a way because I know what's wrong and there is a reasonable action to take. One the other hand if they don't see anything, I'll continue to live, but with what level of quality? Will I be told to live with my symptoms, to "manage them" without any assistance. Will I be abandoned?

The real curse for me is that I'm a great software engineer. It's all I've ever wanted to be, and I love every day that I get to "work", because it's the most rewarding thing in my life, and this is where I get most depressed about my life. On rare days, as a cruel joke, I get a glimpse of what I can be; zero symptoms, full of energy, and massively productive, really deeply connected to the details of my work. Unfortunately, that never lasts more than a day at a time, and no more than once a month, if I'm even that lucky. Most days I'm marginally effective, relying on auto pilot.

I couldn't care less about the potential cancer. I really don't give a crap what's wrong with me, I just need to know. Over the past 6-7 years I've spent a lot of energy trying to figure out how to get my energy back; I lost 100lbs on keto, I tried the AIP diet, I started crossfit (because people told me exercise would give me more energy, when in reality it exacerbated the problem), I started meds for my diagnosed illnesses, tried every supplement to improve energy, improved my mental health drastically, found my support network, quit my shit job, and engaged more with things I love and made relaxation a part of my routine. NOTHING has worked, and I mean that literally. Physically, at no point on this journey have I felt even a little bit more energetic or "better" for any extended period of time; I just seem to have deteriorated further. Now I'm plagued with exploding head syndrome, strong smell of cigarettes with makes me sick, and even more fatigue. I've done all this over the last 6-7 years, and I'm out of both options and motivation. Something is very wrong with me, physically.