It goes without saying that I am very open and comfortable talking about my rare illness and chronic pain [you’re reading my blog after all]. Yet there are some things about my illness that can be difficult to talk about. However, I decided that if I am aiming to raise awareness, I have to be candid about all aspects of my illness. So, here are 5 things you may not have known:
1. Always Fatigued/ “Tired”
Even though I sleep at least 10-12 hours, I say I’m tired when people ask. But fatigue is the more accurate word to use. I would use it more often, but most people don’t seem to understand what it means to be fatigued. Doctors say that to understand it, a “normal” person would have to stay awake for 3 days in a row and then try to function. I personally feel that the number of days can fluctuate depending on the severity of the fatigue. Because I have days where I am more fatigued than others. And quite honestly, I’d rather be tired than fatigued.
2. Constant Weight Fluctuation
Almost everyone struggles with weight gain or loss and it’s always hard to manage. For me, my weight fluctuates drastically as a result of my medications. And adjusting diet and exercise is not that simple [it never is, so I don’t know why some people think it is]. I could be on the healthiest diet out there and it wouldn’t make a difference on my weight. I also cannot exercise due to my pain. So, all I can do is eat as best as I can and make the most of it. But it’s incredibly frustrating and impacts my confidence a lot.
3. Hair Thinning and Loss
My hair was thick growing up. And while hair does change and thin out as you get older, my medications exacerbate that. And when I am under a lot of stress, it increases the loss even more. If I didn’t naturally have thick hair in the first place, the thinning and loss would be more obvious. So, I am grateful for that. But it’s still hard to see my hair shed at an aggressive rate. You can’t tell? Well, that’s because I curl my hair or have it wrapped in a bun so no one can see how thin it really is. I also use products that help mitigate the loss.
4. Simple Tasks Can Be Hard
There are certain things we do in a day without a second thought, like getting out of bed, taking a shower, cooking food, socializing, traveling, cleaning, etc. For me, these kinds of tasks require more thought and I have limited energy reserves to accomplish them, even on my “good” days. Sometimes it takes everything in me to do them and I have to rest afterwards. So, it becomes a matter of what can I do with the energy and pain levels I have for that day and what I need help with.
5. Weather Impacts My Pain
When temperatures are high in the summer, my pain tends to be more uncomfortable than normal. Unlike in the winter where any of the cold temperatures make my pain rise. I have to bundle up extra or make my presence outside limited. And when it rains, I am always tired [more than usual] and my pain can either rise or radiates throughout my body. I’m not sure why any of these really happen. Perhaps it’s just a matter of my body’s sensitivity. And whenever I ask my doctors about it, they say it makes sense but can’t explain why. It’s a mystery.
Did any of these surprise you? Let me know your thoughts in the comments below!
Gamerprincess92 
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