Quick Update: Acts of Heroism

The following blog post is just an update of my travel to see family.  I wrote it for myself (writing is cathartic) as much as anything….probably fairly boring to read.

Christmas was insane to manage while ill, especially with the expectations of my parents (sitting up for meals, on top of visiting with siblings that have major disabilities, and an aunt that's severely hearing impaired).  It is very hard to speak up for my own needs in such a desperately needy, dysfunctional family.

I was fairly ill on Christmas day after travelling the day before, and I had to excuse myself to rest before and after the meal.  This led to a 'lecture' at the meal of how we were all disabled but basically needed to get over it for the sake of others, sigh.

On the other hand, I didn't come here expecting any consideration or accommodation, as I've learnt through experience that this is just the situation.  Taking care of my health needs is completely my responsibility and often at the price of ridicule from others (to be fair, sometimes there are small acknowledgements or accommodations).

Health wise, boxing day was even worse as I 'crashed' from the travel on the 24th. On the other hand, I lay in bed most the day and there were no external expectations of me. My parents in the evening even offered me the couch to lay on as we watched movies.

I was then able to rest some for the 50th wedding anniversary open-house on the 28th.  For me on that day, I was prepared mentally to sacrifice and suffer for the sake of giving my parents the best event possible.  I wore my support hose (which I hate).  During the event, I mostly did the meet and greet at the door during, as well as the 2 hours prior doing set-up (where I tried to sit as much as possible).  I dealt with fairly severe dizziness/lightheadedness throughout.  The noise from the talking at the party was very difficult to bare on top of being so dizzy/light headed.   On the plus side, I wasn't having a day of severe weakness or major immune symptoms.  Small blessings.

I looked down at my hands a couple times during the event, and they were definitely more purple than I'd ever seen them.  No doubt I endured non-stop tachycardia for hours.  I managed to sit down briefly 3 times in the 2 1/2 hours which is more standing than I've done in years.  And thankfully, I only received two "you look fines" and one "after hearing you are so unwell, it's great to see that you're now healthy".  The comments were only mildly bruising to me.  In contrast, my roommate/best friend's family members were all very sweet, knowing through her how tough this would be for me. Three of them made some type of concerned or encouraging comment as to how I was holding up.

On the positive, my parents were so happy to see friends, neighbours and relatives that I am very glad we planned the whole thing despite the sacrifices involved for me.  As I've said many times on here, we get this one life, and for me, it's life in a sick body.  Even sick, and at a price, I still love seeing my parents happy.  I think they felt very loved and celebrated during the event and I know I will be glad we did this for them in the years to come.  I was also glad for the work and effort I put into the slide show, a highlight of the event.  I had scanned old photos and put together a slide show of 80 photos that ran on a loop on their TV.  It was a talking point and provided fodder for conversation during the party.

Then, my only chance to see my niece (9) and nephew (8) were that evening and the next day, so I traveled back (45min) with my brother's family.  I spent the next day mostly in bed at their house, watching you tubes, reading, and playing computer games with my niece and nephew.  Once again, a compromise.  I was sure to enforce a day with my feet up in bed for me, while at the same time 'toughing out' social energy for quality time with my favourite kids, knowing there will be payback.

Tomorrow I travel home, and I am by no means up to it.  I can feel the toll of the week's energy output.  The left side of my face and eye are twitching constantly (in the last couple months a marker of fatigue for me).  I'm feeling weaker and sicker.  I look very pale.

On the other hand, if I postpone travel, it will be longer before I'm at home in my own bed which I am feeling desperate for.  I keep telling myself, only one more 1/2 day where I need to solicit from my body an act of heroism (giggle if you will, but that's what it feels like) in order to get me home where I can recover.  I did put most the heavy items (gifts and some clothing) in a box that will be shipped, rather than try to deal with a heavy suitcase on my own.