Having an autoimmune disease in Covid Times in the Philippines

in Feel Good6 months ago (edited)

Hi all out there, first I want to make clear I'm not looking for pity. I just wanted to share my story and tell people that after the rain the sun always comes back!
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Where to start ... in 1992 I was diagnosed with Myasthenia Gravis, an autoimmune disease. Within the time span of 6 months I was completely paralysed. I couldn't walk, talk, eat lift my head ... just looking at the ceiling. At that point I was only 21 years old and my whole world collapsed. I had so many plans. But I kept hope. I had a surgery which I nearly survived, so apparently I would be facing a long recovery. Slowly slowly I could start, but I was still for 9 more years in a wheelchair.
No need to say that I went through a rough time. I was so depressed that I was making plans to make an end to my life. Luckily our family doctor saw what was happening and he helped me through. He confronted me with the situation. He used a well known trick, but it worked. He placed a half filled glass in front of me and asked me what I saw. I told him I saw an half empty glass. That's your problem, he told me. You see the glass half empty and I see the glass half full. After having some sessions with him I started to realize he was right. We always have options in life. It's up to you how you see the glass.
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Anyway, I started to find things I could do instead of thinking of al the things that were not possible anymore. And that's the time I discovered photography and doing desktop publishing on the computer. So I found a way to deal with the situation. But there was still a tricky part in having an autoimmune disease. I had to place myself several times a year in a kind of isolation. When they were a lot of people sick (flu, Noro virus, ....) I had to stay away from them and stay safe at home.
So now with this Covid I don't have much problems to adept to the situation. The beginning of the lockdown was very easy for me. I saw it as the same situation as I knew from before. But it would be a longer isolation. I'm living in a compound and everyone here was in the same situation, so I could still have my morning coffee and chat with my neighbour on my balcony. Life isn't that hard :)

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Last week I had to make a difficult decision. Now the quarantine is eased and people are allowed to go out again. So for me it's not safe anymore to have contact with others and I had no choice than to keep everyone out of my place. The problem here in the Philippines is that a lot of people can carry the virus and pass it on without knowing it. I saw too many pictures of (mainly locals) who are having parties and gatherings again. They do wear their mask in the supermarkets, but as soon as they start to talk to each other they remove the mask, and when they're amongst friends and family I don't see them wearing masks. I don't want to start the discussion about the effects of wearing them, It's just a fact that I don't feel safe anymore. I know when I catch the virus my changes of survival are very low. So better safe than sorry.
How do I coop with this? First of all, I know it's the best for me, and second of all I could talk about it! Yes I used an exclamation mark, because one thing I've learned in 28 years is that talking is important. Tell other people how you feel, but I mean how you really feel. To me, there's nothing wrong when a friend asks you how're you doing and you tell him/her that you have a shit moment. That you have worries or problems. Maybe they will not be able to solve it, but a lot of times it's already a big help that you can say out loud how you're feeling. Don't be ashamed or too pride to say it. Especially in these hard times. The times are difficult and uncertain, but I can tell you this: no matter how hard the rain is pouring down on you, behind the clouds the sun waiting to shine on you again.
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Keef safe, positive and remember to talk about your real feelings!

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Yes, I wouldn't tell you that you have a rough life because you already knew it. It just caught my attention by what the doctor said to you. It was so meaningful but it's hard to understand. But I'm happy knowing you're enjoying life even in the hardest.

I just hope you will still enjoy life even though people are starting to go out because the quarantine was lifted.

Good post, I'll tweet so that people will know how thankful we are to have the life we have now.

Thank you for your kind words. The story with the glass was a real eye opener to me. And believe me, I'm now enjoying every second of my life (okay, minus a couple of seconds ... hahahaha). I'm aware for me the next coming months will be hard. Seeing everyone out and being stuck here. But like I said ... Better days will come. I decided to write this very personal post to give people a boost, help them to conquer their struggles. My message is try to enjoy life at fullest. Take care and stay healthy!

It's well written, can I invite you to the discord server of hiveph community? I feel like I will be having fun talking to you. Just hoop-in anytime you like.

https://discord.gg/QSr5UYj