Four Days Down

I've been crashed for four days...not long you say? It feels like forever. Perhaps because the last 15 years of my life have been a series of crash days piled upon crash days piled upon relapses.  It's hard to remember the "not" crashed days when you are living the crash days, although I am thankful that I have the "crappy" days where I'm at least not too sick to live a little.

I'm not sure why I'm crashed? It could be PEM, but I can't put my finger on an over-do.  I did finish my marking last week so maybe my body was "holding out" until I was done the winter course.

Sometimes I have an M.E. crash - weakness with viral symptoms - if there's an infection going around.  I don't "catch" the infection, I just get the M.E. flare/crash.  Anyways, I can barely lift my arms or stand right now and I'm out of breath walking around the house.  It hurts to take a deep breath or talk, especially in the afternoons.  I've been avoiding people, I just don't have the energy.  I'm like a gas tank with literally nothing but fumes.

Despite this, I just forced myself outside with the dog for some air.  I've probably "sat up" for a total of one or two hours the last 4 days - pathetic! I live in bed or splayed on the couch.

My spring course starts next Monday, so no 'mental' rest for the weary.

I woke up to around 4 cm of snow on the ground this morning.  It's supposed to be cold with flurries and/or rain most the week. At least if I remain crashed the sun/spring weather won't mock me as I lay here.

Can you believe my pal Teagan turned nine this week! How time with our canine companions flies.

Me and Teags last fall 

I'm Moody

I'm a moody person.  Not only that, but I can go from feeling fairly happy and content, to frustrated/angry, to lonely and depressed all in the matter of hours.  Yes, being ill all the time does affect my mood, but they are not the same. My moody personality/disposition pre-dates me getting sick. Not that being sick all the time isn't depressing, it is, but this doesn't mean I am never happy, or that if I'm sad it necessarily has anything to do with being sick.

In fact, I get super frustrated with people equating my mood with the illness/M.E. and vice versa.  The worst is my dad who when I tell him I'm feeling really ill or sick he replies "cheer up" or "how can I cheer you up?".  If I said I had a cold virus or cancer would the response be "cheer up".  He's not the only one, others have, when I tell them I'm not feeling well, immediately jump to a comment about my mood.

I wish friends, family and acquaintances could spend just one day in this sick, disabled body.  I'm positive I would never hear a comment like this again.  It is so much more similar to the worst day of a terrible virus after having run a marathon and so unrelated to mood, it would only take a day in my body to "get this".

Imagine trying to do a simple thing like brushing your hair or teeth and feeling your arm muscles give out, like completely give out!  Or standing up (and still) for more than a minute (literally 60 sec.) and feeling your legs start to burn, your periferal vision starting to go...if you try to push through a vibration/buzzing starts in your legs which then get very shaky; push further and you black out completely.

Or you go for a short outing and 24 hours feel like you've been hit by a bus.  Your throat hurts, you have a low grade fever, you feel the lymph nodes in your arms pumping and aching, every muscle in your body aches and it hurts to take a deep breath, like you have a deep seated chest infection. Sick, physically ill, not moody.

Anyways, I haven't written a post for a while so here it goes: My life is okay, I haven't died from working online at home.  In fact, at the moment I'm no sicker than I was in the fall when I wasn't working.  I relapsed in the winter but maybe that wasn't fully work-related, although I'd be surprised if it didn't contribute.  While the work probably effects my health (negatively) to a degree, and it definitely effects the rest of my life (I have little energy left to pursue anything hobby wise or recreation), it also comes with a feeling of self-worth and extra money $$$.

People who aren't able to work due to illness face a lot of prejudice. The narrative  in  our western society is that your worth as a human is in part connected you your ability to work, or be productive in some way.  This underlying message has negative consequences for those who can't work due to illness or disability or age.

What is our value if we can't work?  Having been unable to hold down even a part-time job out of the home for most of the last 14 years has meant I have had to learn to assess my worth outside what I "do".  Not just work, but hobbies and activities that once helped define me, that contributed to my identity were swept out from under me.  I still struggle with my value as a human outside of productivity.

One rare gift of this illness is I am able to see value in a human life even if someone lives "off the system" and can't work or even pursue hobbies. My specialist used to say "we are human beings, not human doings".  God I miss her sometimes.

As for this rare gift/insight of "M.E.", while I still struggle with it, at times I have clarity about human value and how unrelated it is to "human doing".  I think being sick and unemployed, on disability,  has allowed me to see people for who they are in a way that others who haven't had to live without "doing" would find hard.

Another "gift" of the illness is my understanding of "giving".  I had a counsellor early on in the illness who told me  that maybe I needed to learn how to be a "gracious receiver".  Since then, when I feel that terrible knot in my gut about being on disability or having friends or family help me financially or physically I try to think about the two-part relationship involved in giving and receiving.  For some of us, I think it is far more difficult to receive than to give. I try to graciously receive from my friends and family although I still find it hard since the balance is so "off".

When someone gives me something or is generous, and I am unwilling to receive graciously, they don't get that good warm feeling of giving.

It's funny but I have friends who are happy for me to talk about my insights about being a gracious receiver, but can't manage to give the gift back themselves, by which I mean - receive graciously in return. I think I have a very generous type of friend because I can think of 5 good friends off the bat who are extremely generous in their giving but don't seem to like to "receive" (at least from me).

If you are a relatively healthy person with a sick and/or disabled friend, imagine how hard it would be to be so trapped by disability and finances that you were rarely able to "give" things to your friends and family members? I think I can speak for most of us sickies when I say you do us a great service, make us feel helpful and happy, when you allow us to give you the occasional gift without refusal or thought of return (now I need to pay them back somehow).  Whether this is letting us hear about your problems/struggles on occasion, leaning on us in some way, letting us buy a meal/treat once in a while, risking asking us a favour, or being a gracious receiver when we send you a card or photo or gift.  Think about how good it must feel for us to "do something" on occasion.

On a completely other topic, there are still big sheets of disintegrating ice in the bay, here's a few photos:

There's ice in here but I'm still going in.

Teagan doesn't "get" selfies

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).

Officially a Relapse

My overall function is way down and every time I think I'm starting to edge I'm back in the hole.  Since it's been 3 weeks now I must call this a relapse not a crash.  A crash is a viral and energy reaction to activity usually hitting a day or two after said activity.  This is an overall loss of function.

I'm not surprised. I work almost everyday for 2-4 hours, sometimes more.  Yes it's in bed brain work, but it must be taking a toll.  While I can do a lot less physically these days, mostly I'm not over-doing it body-wise and so the relapse must be from too much mental work. There is also a constant stress related to the work and my dad, who is quite needy emotionally. I do love this online teaching, but it's costing me big time.

I have a sore throat most afternoons and evenings, I have little energy and notice even lifting my arms is draining.  The OI is much worse, if I'm sitting or standing my feet are purple from blood pooling and I feel light-headed every time I stand up. I just feel like I have mono, even walking to the kitchen or sitting at the kitchen table for 5 minutes is exhausting.

It just sucks.  It sucks that I've spent 14 years of my life so limited by this illness.  14 plus years feeling sick every. single. day.  It is so frustrating to try to do stuff and just have nothing in the tank energy or strength wise.  SO FRUSTRATING. And I'm trying, every day I try to do things, I don't give up. But it's really disheartening to be so sick and incapable.  I wish I had a medical advocate. But based on 14 years being sick with this, that's a pie in the sky dream. Sometimes I just want to give up.