Wellness Wednesdays: Tips for Those with Invisible Disabilities

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. 

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. 

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

Makati Med Looks So Different Now

I haven't been to Makati Med for almost 10 years now. The last time I was there was to visit Titay or Tito Ben. I needed to see a doctor since I haven't had a face-to-face check-up since I got home. The booster shot seemed to have a bad effect on me because I've been having chest pains for a few weeks now. I've also been having frequent asthma attacks. 

Any chance to go out is a treat for me! Good thing we went early because we were able to find parking. I felt a little lost when we reached the ground floor. Everything looked different! The lobby now looks like the hospitals in Singapore. There are two towers now and I was clueless on how to get around. Luckily they have a lot of security staff you can inquire from. 

My doctor's office used to have wooden interiors. It's now mostly all white! My pulmo at Makati med  is my original doctor. His wife was my original cardiologist. They've been taking care of our family for several decades now. I hope they can unearth my old xrays so they can compare and maybe get a better view of what has happened to me. 

The best thing about the new look of Makati Med is the improvement in processes. I was ordered to do a chest xray. I just went down to the ground floor, presented the memo and I was done in less than 20 minutes. By early evening I received a message that I could view the results in the app. I could also easily share the information to others (i.e. my doctors in SG) by sending them a link (only available though for seven days). They just need a browser to view the xray.

Something really funny though happened. I've gotten multiple xrays already and I'm familiar with the process. After they took the shot, they hurriedly asked me if I removed my bra. I said yes. I was puzzled why they asked me. They had me wait while a senior radiologist checked the xray. He reassured me everything was okay and let me go. I realized the staff who run the xray were probably pretty junior. They mistook my sternal wires as bra wires. Hahaha! That's the first time this happened to me. Maybe the pandemic has really kept rare creatures like me away from hospitals. 

I'm still giggling about it until today. I'm still really wary about going to the hospital, but I trust my doctor. If he says it's safe for me, then I just need to be extra cautious and follow protocols. Praying what they found in my xray can be resolved easily. That means I really need to be stress free!

#BeKind #StaySafe