Pet Peeve - why "you look great" can hurt

I actually had it in my mind to write about some of the positive things that are in my life right now and this came out instead, so I guess I needed a release of frustration, which isn't to say there aren't good things happening in my life at present, there are.

It is clear after 15 years, that to most people, I don't look sick.  I have no physical deformities and besides paleness/pallor from the POTS and M.E., or the fact I don't stand up for long and if I do my hands and feet turn purple, there wouldn't be much for an outsider to see.

(On a side note however, how is it back when I went to my specialist's office, that I could almost immediately tell who was really sick with M.E. and who was accompanying them? People with M.E. look pale, and often have a hoarse tired voice and/or sore throat).

Anyways, I'm letting non-sick people off the hook on this one as I know the outward signs of this illness are subtle, especially if you're not really looking.  However, when people know I'm sick, why do they have to tell me how great I look?  I don't go around telling all my friends and acquaintances how great they look? Why is this a thing? Do they think by them saying I don't look sick, I should then not feel or be ill? Do they think this contradiction (that I apparently look so great and yet claim to be ill to the point of significant disability) needs to be pointed out every time they see me?  That pointing out this contradiction will somehow cheer me up? "Wow, I know you're sick and everything but given how great you look...."

To get to the related pet peeve I really want to discuss - if I DO manage to force myself out to do an outing or activity, or I'm happy about something, or able to manage a social visit, friends and acquaintances use this as evidence that I must not be that sick or at least "see, you're managing".  They either don't understand or believe about PEM, or they don't believe it's all that awful. How many times can I tell people that PEM is worse than the worst day of a cold or as bad as mono or influenza? At this point they either believe me or they don't.

Even worse, I have several friends that often encourage me to do more (social or work) even if it means I crash or relapse.  Either they don't grasp or believe how awfully physically sick I am when I crash 36 hrs later, or it's more important to them that I follow the socially acceptable script (social, recreational, work) than that I avoid physical suffering.

As an important side note, I do have friends that "get it" to a degree. And I have friends that even encourage me to pace or not over-do. My house-mate/friend does all kinds of errands and tasks to save me energy and from subsequent crashes. Not only that, but she never complains that I then sometimes spend that energy doing recreation/fun for myself, when I could have taken care of self-maintainance tasks that she did for me with her limited time off (groceries, post office, drug store, shovelling, lawn mowing).

It's important to note though, that choosing and being encouraged to over-do are very different.  Sometimes I choose to over-do in order to spend time with friends, or travel to see friends, even though I know I will crash later.  This is my choice and not a pet peeve, I make a judgement that the doing or spending time with someone I love, is worth the pay-back.

Everyone is on a journey, this life-journey.  For me, the all encompassing biggest challenge/obstacle I face on my journey is having to live in a sick, malfunctioning body (for the last 15 years).  Not only that, but there is no way out, I've found no useful treatment and I don't even have a knowledgeable physician.  And so, this awful illness colours every aspect of my life. I feel so alone sometimes navigating life while ill.  Due to physical limitations I am mostly home-bound and spend an inordinate amount of time alone.

That said, I realise that every friend and acquaintance in my life has their own struggles, their own obstacles and challenges on this journey.  And I probably don't always "get" these as an outsider, just like they don't really "get" mine.  I probably do or say insensitive and thoughtless things. I can be pretty self-absorbed.  On the one hand, I wish I had more people in my life; colleagues, friends, family, anyone.

My "people" all feel so distant right now. But it's really hard when they don't have a clue or never acknowledge this huge elephant I live with - instead they just point out or comment on the fact that they don't see the elephant. And while on the one hand I need and crave connection, alternatively I find sometimes I want to withdraw from people all together just because social stuff is so exhausting while sick/ill.

While I'm thankful and grateful that I don't look awfully sick it's a mixed blessing. Since I don't look sick, but "look so great", not only is this illness clearly invisible, but sometimes I feel invisible as well.

Improvements/respite

I've had some improvement in my health. I have pulled out of the relapse and am back to my "normal" level of functioning, which isn't great (mostly homebound), but I can tolerate very small/short walks, and a couple outings a week.  I LOVE ice and frozen lakes and ice-out in the spring.  I live on the largest fresh water lake in the world and this time of year when it's still winter (March), I like to get out on blue sky days especially, to see the ice.

We have had the craziest winter I've experienced in the 16 years I've lived in this town.  Mostly it's been unseasonably warm.  We've also hardly had any snow (that said, generally it still sticks around because even a warm winter here is freezing or below).

The bay on Lake Superior here is usually frozen throughout the winter, and this year, except the harbour, it was mostly open.  The inland lakes are solid as always, but not as thick as some years. Recently we've had a lot of -20 nights and with so little snow, the inland lakes are like vast skating rinks - they are amazing!  (Just to give you perspective, people drive on lakes up here most the winter).  Here's a few photos of the ice from my outings over the last few weeks.

Shoreline ice, Lake Superior

My dad looks like an Arctic Explorer haha

A nice flat place for a walk

I've disappeared

Sorry I've disappeared.  There is just too much going on for me to come here and post/write very often. There are some family issues that are causing me stress even though I can't do much to help.

My health has improved slightly, but I'm still not back up to where I was in the fall.  Honestly, I don't think that will happen until I stop working in June.  Part-time work and stress are taking their toll on my body. Sometimes I feel like I'm just not cut out for life in general.  It's like trying to do it with constant influenza or mono.  I'm just so.......fed up and done.

I am so tired of feeling sick all the time, and being so homebound and shut in, that I could scream (if I had the energy). My moods are fluctuating between desperately sad and lonely to frustrated, angry and trapped, to occasionally more peaceful and content.  I do love the teaching but I feel conflicted, part of me is grateful for the work, purpose and distraction, and part of me loathes it given what it does to me. I guess it's the same as loving anything that causes you harm.

I hope all of my many many readers (hahahahaha) are AWAP (as well as possible).