Update to "I'm so tired" post

After writing my post titled "I'm so tired," I called my Nutritionist and voiced my frustrations.

To provide some context for why I sought his support: he is a dedicated runner and my occasional running partner, he has been privy to the disabling symptoms of my AS, and he's truly the only person who has insight of my private emotions, thought processes, and personal characteristics. He's obviously somebody I trust, and he's provided me with invaluable support during times of poor coping.

Our midnight conversation centred around my irritation with having frequent night sweats, eating too many refined foods composed of simple sugars, not having the motivation nor energy to exercise, and my feeling of general malaise. I spoke of how isolated I was feeling because I did not have the energy or desire to leave my home. Even the simplest of tasks, such as getting out of bed or answering the phone, felt like a chore. So I would curl up in bed under my blankets and wish the day would pass faster. I even spoke of my desire to not awaken at all (likely my annoyance expressing surrender).

Beneath it all, I feel guilty: guilty for not being able to muster the mental and physical strength to overcome the symptoms. I know I have not accepted that I have a disease that can limit my functional ability. It makes it more difficult to accept when you can perform certain tasks one day and not be able to function with minor tasks the next. Sometimes the thoughts and feelings of guilt are worse than the physical expressions of AS:

• What does it feel like to have the energy of a "normal" person?


• Why can't I just get out of bed? What's holding me back?


• Just snap out of it!


• Am I really symptomatic or am I just being lazy?


• All I want to do is sleep.


• I don't want to talk to anyone. It's hard for others to understand.

We spoke until 1am. He listened and validated my impatience. It was all I needed. I was worried that having slept all day that I would be unable to sleep now. However, I tried to sleep at 1:30am and slept soundly until 9am. My body obviously needed this rest over the last 24 hours. I awoke feeling refreshed (despite the night sweat) and told myself that it was a new day, which I started off with a healthy protein shake in a water base with some frozen fruit. I then made a list of my plans for the remainder of today.

It's not an easy road for many afflicted with AS. We all cope differently at different stages of the disease. I cope better during the physical pain, but poorly during symptoms of fatigue, which has a mentally draining component. My coping is also poor when I am not able to exercise; being physically active is an integral part of my life, and to be prevented from engaging in that lifestyle wrecks havoc on my mental wellbeing. I have always been a harsh self-critic always striving for my personal best, and peripheral restrictions are the most difficult to personally tolerate.

Lesson learned today: We can't control what we feel, but we can control how we act on those feelings. If I feel guilty, frustrated, or tired, then I need to learn to accept those feelings and let them express themselves. What I can control is the blame I self-impose for those feelings. I must also learn to accept that I have a real diagnosis (this is the hardest part for me because it involves accepting having external limitations imposed on my functional ability, and I don't like to feel as if I don't have full control over my body). However, every day is a fresh start; now I need to take it one day at a time.