Great Article

I just read an article sent to me from a friend and it inspired me to write. Though the person who wrote this article has Lupus, not Myasthenia Gravis, the way she describes her day and her struggles is very similar. I have some friends who have Lupus and I know how hard it is for us to coordinate getting together because we both need to be having a good day. What a creative way to help others understand what someone with a chronic illness goes through! I encourage everyone to read this excellent article. Article

What this made me think about is the fact that when others see me, they only see me at that moment. They haven't seen what I've been doing, or should say, not doing the hours or days before that. 2 blogs ago I touched upon why it is I hide out if others are around that aren't specifically a visit for me, but I didn't go into what it takes if I don't hide out, if that visit IS for me. It very much relates to this article, but I'll give you my own perspective.

When I was an event planner, I often felt unappreciated. See you put hours, days, weeks, sometimes even months into planning an event that may be as short as an hour. Everyone who attends that event only sees the event itself. They don't see what it took to make that happen. They don't see or even think about the amount of time, energy and effort it took.... to put together that slide show, to create and order the signage, to individually stamp and address each and every invitation, to repeatedly call the speakers, to determine set up for the room and then redo it when someone cancels, etc. Prior to the event I was the go to person. The day of the event, I was pretty much a nobody in the eyes of attendees. The best feeling was when during an event someone would recognize me for the effort that went on behind the scenes, to be thanked for making it all happen.

So anyways, think of the moment I spend with others as the event, and everything else as the preparation for the event (where all the work is but goes unseen). When I first wake up in the morning I am in so much pain and so stiff. Sometimes it takes quite some time to get my body moving. Sometimes I have to use the muscles that are working properly to throw myself in a certain direction to make up for the muscles not working properly. I keep a little snack by the bed so upon waking I can eat it to take my medicine without having to walk downstairs. I usually then sit up in bed a little longer and read or just lay there until my body feels ok. I go to take a shower and here at my parents they have one that has a switch on the top to turn from coming out the top or to come out the handheld one. If they forget to turn it, reaching up there and turning it wears me out a bit, sounds ridiculous but its true. So then I shower and I get cold so easily but heat makes MG worse so I try to find a good balance which seems to not exist. Oh and if I'm having a really bad day, a shower is not even on the list (don't worry I don't go out on those days either haha). So then I have to dry my hair and that's not the easiest because holding anything for a long period of time (long as in more than 10 seconds) is exhausting. If my arms aren't having a good day I don't dry my hair. When in Tx I would sit on the computer chair while doing all this but here I've lately had more energy and using a chair isn't as accessible here. So by the time I am finished getting ready, I'm really wiped. I have to take a few hours and do nothing pretty much to regain some strength/energy.

In the current status I'm in (as in how I'm doing healthwise) I have been picking one thing to do almost each day. As in yes, some days I don't get much of anything done. So that means after my long rest break, for example today I'm doing my laundry. I've cut it down to only doing 1 load a day because just putting the clothes in the machine, transferring them to the dryer, and taking them out is a lot of work for me. Someone else carries the laundry basket down the stairs and back up the stairs and my mom's been helping with hanging everything up. So that's my "activity" for today. The rest of the time depending on how I feel I will just lay around literally not doing anything because I can't or take care of a few things such as medical bills, or read. Whatever I do I need not be standing or walking for any extended period of time, but I also need to get up from being seated or laying because then I get stiff and in pain. Movement vs. rest needs to have a perfect balance. Another example was yesterday I went to lunch with a friend. Where we decided to go was determined by which restaurant had parking right by the door. Going out is no longer a hop in the car and go wherever. We could take the wheel chair but I hate having the extra hassle if not completely necessary. Well all morning I rested to do that and then upon coming back she asked what the rest of my day would consist of. Answer: nothing. It's somewhat funny but it's true. I used my "spoons" like the article says, to go out for lunch that day. And it was awesome to finally catch up with her! My days are also much determined by my body... some days my upper body is stronger and lower weaker and somedays reverse... so I'll make that days focus on whatever part of my body is working best.

The main reason I wanted to make a point of this is because of often hearing "you look fine." We already have talked about how look does not correlate with whats happening inside me. However, furthermore, perhaps the reason I look fine at that *moment* in time you see me is because I prepared for it. I have noticed more and more lately how wonderful I feel. Even as the person going through this, I had to make a point of figuring out why, and this article helped me do just that. It's because when I know I have something coming up- friends visiting, a doctor's appointment, etc. I take all measures I can to prepare to be able to do that one thing and I put a lot of my "spoons" towards it. But also keep in mind, MG is not always something you can prepare for so things change a LOT. Patience and flexibility is definitely being taught to me.

Yes I decorated my room here... but how long did it take? Forever! And I didn't even physically do anything in regards to placement of furniture, hanging things up etc. I have this to do list that seems to keep growing because everything takes much longer than it used to with rest breaks, and when it comes down to something on the to do list or seeing a friend, I may choose to see a friend.

So when you're at an event, watching a theatre performance, or hanging out with someone with a chronic illness... think about the behind the scenes effort that goes into it, think about the "spoons" that were used so that very moment could happen. And thank you for spending that time with me even if it has to be planned out a certain way, cut short on time or rescheduled.

As always, thanks for reading! :)