Read Part 1, Part 2, Part 3 and Part 4.
Here’s the final part of my story, which is basically just a rundown of where I am now and where I hope to be in the future with my disabilities. I will most likely continue to blog about all of this as time goes on, so I won’t go into a ton of detail in this entry.
My Current Physical State
- I experience constant but varying levels of full-body pain every day, plus:
- My face is painful for most of the day due to sinus pressure.
- My neck, shoulders and upper right back are sore all day from an injury I suffered falling down the stairs a few years back and didn’t heal properly.
- I often get occipital headaches when lying down because of the neck pain.
- My right hip is particularly painful at night because of the arthritis in my sacroiliac joint.
- My lower left leg and knee are often painful due to nerve compression and more recently, an injury from a fall.
- All four of my limbs will intermittently suffer from nerve pain, shooting and burning sensations, and numbness.
- Very rarely, I will get an ache in the nerve near my eye that I had shingles on in 2020.
- If I do not get 7+ hours of sleep with at least 1.5 hours of deep sleep, I really struggle to function the following day, even with my ADHD medication.
- If I do not take my ADHD medication (usually because I forget), I still get fatigued like I did pre-medication, but if I take the medication properly, I can usually make it through a regular day.
- If I have an appointment or some other event, the rest of my day is usually going to be “wasted”, and the following day will often be a write-off too.
- I will have random bouts of illness that may or may not be a cold/COVID, which is like post-exertional malaise (flu-like fatigue), but with nasal and throat symptoms. I assume this is because of my chronic sinusitis. I can never tell until the next day whether it’s an actual cold or not.
- I find it difficult to walk my dogs for longer periods of time than usual. But I am thankful that I can still manage the usual 20 minutes!
- My eyesight has been progressively getting worse since the pandemic began, with a .50 worsening of strength in my left eye in the last year alone.
- I’m 20kg heavier than I was at the beginning of the pandemic.
My Current Mental State
- I am generally better equipped to accept that I am disabled and as much as I’d like to get better, it’s just not happening for me right now. And that’s okay. I should just do what I can.
- I do sometimes think that I’m being too easy on myself though, which can often lead me down the “I’m so useless” path of thinking.
- My emotions are far easier to manage now that I have been treated for ADHD. I very rarely cry anymore, and it takes a lot more for me to get angry like I used to.
- I think more positively about the future than I used to, but it’s still difficult with everything going on in the world. It’s almost as if, just as I was fixing myself, everything else went to custard.
- I generally feel like I get more done and am happy with my output most days. Despite the pain and on some days, fatigue and interruptions from other activities.
My Hopes for the Future
When I started my ADHD treatment, I had high hopes that doing so may help me recover a little from my chronic illnesses as I thought they were a result of the trauma of undiagnosed ADHD, but because I contracted COVID only a week after starting medication, I haven’t really been able to test that theory.
But the fact that I do feel mentally better gives me hope that when (if?) my body works through the COVID infection as it did with the EBV infection in 2018-2019, I do have hope that I can improve to the point of living a traditionally productive life. Even if I’m only working part-time, it’d be preferable to this seemingly permanent unemployment.
Until then (or maybe if it never happens), I want to work on being okay with my disability. I waste a lot of energy beating myself up over not being a productive, contributing member of society. It often doesn’t help when people make comments to me about it, but I need to learn how to ignore those comments and remember the value I do have even in my disabled state.
And that’s my story. I will likely post updates in the future, but that’s the basic gist of everything that led up to now. I hope you enjoyed reading it and maybe see something you can relate to!
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.