I'm exhausted

I had a fairly relaxing uneventful Christmas, which was nice.
We did a meal with my dad, and Christmas Eve I set up an online church service for him so he could "attend" his old church.

Since Christmas, I've been getting ready for the course I'm teaching online this winter, I'm feeling close to being ready, and I love having something to do that feels productive and will earn me a little money.

However, in general, I'm finding a lot of things exhausting. For one, I've had problems with my right shoulder for quite a few years. It hurts at night in bed and sometimes I wake up and the pain lingers.  A few weeks ago it also became an issue with my left shoulder, leaving me no side comfortable enough to sleep on (and subsequent insomnia).  One day the week before Christmas I woke up in so much pain I was at a loss.  A friend who is a massage therapist saved me and squeezed me in for a session which helped.  She said one muscle was in complete spasm.

Since then, while it isn't as bad as it was for a couple nights there, the pain and sleeping issues remain.
I will eventually (I guess) have to figure out what is going on, as I can't afford another massage.

So I've been sleeping fairly poorly, and also feeling a bit depressed.  It's just that often my world feels empty without my mom in it.  I don't miss her every minute but daily things make me think about her, and the holidays have left me feeling an aching longing.

Also, because I've been sick for so long, I feel as if my life has meant very little these past 14 years.  I'm tired of not being able to do most of what I want to do.  I'm tired, literally tired, of feeling so drained and weak and exhausted.  I'm tired of being so poor.  Yes, I know it could be a lot worse, but sometimes I just wish I had a little more.  As it stands, every cent goes to paying the bills and I'm left wondering how I'll manage it again next month.  And how will I when EVERYTHING goes up year after year (property taxes, hydro, water and sewer, gas, cost of food) except my disability check?

I'm also feeling exhausted by social media.  A constant barrage of people posting about political stuff and/or world crises, or on the other hand, post after post by people I barely know showing them out doing activities with friends and family, honestly I'm jealous.  Alternatively, in my M.E. group, so many people are in such rough shape and struggling right now, I'm just fatigued by it all, it's too much.  I'm considering just taking a break from social media.

So on this depressing note, a new year approaches.  I want to make the most of it, continue to work a little part time if I can swing another contract or two, create some art, and this summer may be my final one to do agility with my dog (she'll be 9!).  I have been sporadic and yet persistent in participating in this activity and it's been extremely challenging (at times ridiculous) to work within the physical limits placed on me by M.E. and POTS, but I refuse to give up something else I love...I will try to eek out ways and moments to do agility one final summer.

Back to the "feeling stuff", sometimes I think I'm too sensitive for this world.  I "feel" things so deeply.  Joy yes, excitement and happiness, yes, but also deep and overwhelming sorrow, sadness.  Empathy can take me down.  Loneliness too.  I try to be tough, but I'm just not.  I think being ill and having a lot of time on my hands where I'm just resting doesn't help.  A month or two ago I saw this YouTube with Mayim Bialik and you might appreciate it if you are one of those people who like me, feels things deeply: https://www.youtube.com/watch?v=IBv6uFB-lOI

Maybe being sensitive is a super power?!

Happy Holidays!

Happy Holidays!

While Christmas and New Years can be a great time to enjoy friends and/or family, for many, they can also be really difficult.  The issue I hear most from people who are disabled (even partly) by chronic illness is that the holidays come with so many expectations.  Expectations to buy gifts, to participate in far more social events than normal (even if it is in your own home).  I've heard more than one person with M.E. say how it seems as if family and friends expect their sick family member/friend to all of a sudden be more functional during the holidays (for no apparent reason).

And then there's the crashing.  I crash every....single....Christmas.  For many years this was due to a combination of travel and visiting family.  I push too hard every holiday, (and probably appear fairly well to others) but then later pay the price with a good 'ol M.E. crash (which is a lot like influenza with milder symptoms but more disabling weakness).

Anyways, on the positive, since my trip to Minnesota and a short crash, I've been doing fairly decently, doing things to get ready both for my course in January, and the holidays.  I also had friends over to do art.  However, two days before Christmas I am now crashed!!!! Pretty badly crashed. The timing just sucks, however, I should have known better than to go over-board the last few days.

Whatever your holiday brings and whether you are healthy or not, I hope that you avoid putting pressure on yourself due to your own or others' expectations.  I hope you can find some time for friends, family and even a few moments of peace in the coming weeks.

Here's my last print of 2016 - Juncos.

Insidious

It just never seems to end, this disease is so chronic. I over did it all week.  My dad had two Dr. appointments (Mon. and Thurs.) across town.  I find driving utterly draining (and crash inducing) but I also don't think he could ever find these places on his own...and he needs an advocate, so I went.  Wed. I had my own appointment at the University and Tues. someone interviewed me here (I'm being featured with my printmaking in a local arts and culture magazine).

Overdoing it does have it's consequences, no surprise. I am so exhausted and feeling ick (like that weak fluey sick feeling) there are no words to even describe it.  Just walking to the kitchen and back I'm out of breath and utterly exhausted.  This illness is insidious and life-stealing.  We live, but always with a layer of heaviness and weight, through a thick film of horrid.  And yet "I look great" (I heard this again just last week).  No healthy will ever "get" it.  I am so so so so tired, feeling so awful and exhausted. Oh wait, I may have already mentioned that. Sigh.  Thanks for "listening".

I want to do Christmas, shop for people (too sick, stores make me weak and dizzy), decorate my dad's suite (too weak and sick), bake some stuff (too tired), work on preparing my course (I will do it tomorrow), call my brother (tomorrow, too tired and weak to visit today).  You get the idea.

One of the tricks surviving day to day feeling like this is telling myself I don't actually want things to be different, accepting that sick is just my life...On that note, I think I'll go watch a cooking show.

Home Sweet Home - Busy

Well I made it home, and then had a 3 day decent spell.  I've been taking care of all sorts of sorting and organizational stuff at home.  Honestly, I think I mostly just moved things around, but the fact that three bags of trash went to the curb tells a different story.  My house is quite small (although plenty big enough for two people).  This means I can't collect a lot of junk or store stuff indefinitely if it's something I'll never use.  The exception is books, there are books everywhere (and I did get rid of a bag of novels).  I also brought books, some dishes and blankets, and 3 boxes of my mom's files and collectibles from my parents' house that I still have to sort through.

On top of my manic (well 2 or 3 hours a day which is  a lot for a sickie) organizing, I opened an Etsy shop which is keeping me surprisingly busy.  Then of course my dad is calling or visiting often.  To make life even more exciting, my brother C, who has a psychiatric illness and was living on the streets after my mom died first disappeared, then ended up in the hospital (in southern Ontario).  My healthy brother B. and his wife (since I'm my dad's care-giver) wanted to have my ill brother C move near them rather than have me take on another family task, however, my brother C. has been calling me multiple times a day from the hospital which is draining!!!  Also, I can't help but worry about him, he has so many issues (mental illness, drugs and alcohol, etc.).

Then, it was the anniversary of my mom dying a year ago on December 2nd.  I had wanted to take the time to do something in tribute to her, but in reality, a FaceBook post with some photos is all I did.   I do think about her all the time and was hoping someone would connect with me through that post and share memories.  Unfortunately of the people who are closest to me, most didn't really know her so couldn't say much. For those who did know her, life goes on, people have their day to day lives and I don't think they grieve the same as close family.  My remaining family don't have the desire and/or ability to talk about her and share memories.  Maybe I'll call her sister (my aunt) who is still living.

The final thing on my plate is a course (online) I am teaching in January.  I should be getting it ready, but haven't done much and time is ticking.  This week my dad has two appointments but I'm hoping otherwise I can dedicate some time to polishing it up.  It's the same course I taught in the summer but over 12 weeks not 6, I think it will be about the perfect amount of work.