If you look at me you'd never think I am disabled. People always assume I function very well. What they don't know is my mobility is limited and I need help with many things. My energy and stamina is also very limited and I can only last 15 minutes on video calls. I rarely go out because I am immunocompromised and well there are good days and bad days. My boys keep me indoors so I don't get sick.
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| Managed to pull myself together the day after a bad night. |
I'm a handful to take care of, so here's a few tips for you and your carers (and spokespersons):
1. The Nile is not just a river in Egypt. Denying your medical condition is just going to make things harder for you and your carers. This was probably the best advise I got from my OG allergologist. It's easier to power on when you know what you're up against.
2. Know your body. It took me awhile to understand whether I need medical attention from a doctor or when I can just solve an issue at home. It becomes more problematic when you have PTSD. Since I got home I've been more mindful of what's going on with my body. My doctor here advised that I should avoid going to the hospital as much as possible.
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| Bad night due to bad AQI. Oxygen went down to 90 and I thought I was going to pass out. Really useful to have an oxygen concentrator. Solved the issue in 40 minutes and then I went to sleep. |
3. Voice out what you need. I immediately tell the boys when I am having a bad day or when the AQI is bad. They change "modes" depending on how I'm doing for a day. When my triggers are turned on I discovered that sometimes you just need to rant to a trusted person and then you'll be okay. [See also my post on "Managing Stress and Triggers"]
4. Address issues as they come, don't wait for things to get worse. If you're in pain, it's better to do something about it than wait for it to go away. Things normally just don't "go away", they get worse! My physiotherapist advised that oftentimes there's pain that can usually be resolved with exercise. I exercise whenever I have back pain, leg and arm pain. I follow the exercises my PT taught me and that oftentimes resolves issues.
5. See a doctor when you are "concerned". A lot of patients in the PE group I'm in ask whether they should see a doctor when they experience symptoms (i.e. leg swelling, shortness of breath). The advise of other patients is always the same, "Don't search your symptoms on Google. See a doctor." Our bodies are all different, so if you are having concerns, go see a doctor.
6. Surround yourself with people who understand. I've been ridiculed because of my medical condition. Not everyone would understand so let it be. Just focus on those who truly love you.
7. And most importantly, pray. Draw strength from your faith and the love from your family and friends.
Having invisible disabilities is hard to manage and not easy to understand. Don't let it keep you from doing things you love. Just accept it and adjust as needed. Work with your doctors to see how you can improve the quality of your life.
#BeKind #StaySafe
