The ups and downs

my dorky loyal friend

Well I'm back home.  It feels nice in some ways.  I like being in my own bed.  But the travel day back and the day following were just terrible.  Overwhelming waves of sickness, weakness and the feeling of poison coursing through my body.   I didn't care if I died, I felt so sick.

But two days after my travel I picked up again.  I kept saying "This is much better, much better, I can't believe how much better I feel!"  You know, I never feel well.  I never feel healthy.  I feel as if no matter what, I am dragging a sick, heavy body around with me.  But when I'm worse or crashed, it is so severe that I almost can't take it mentally or emotionally.

While there are fluctuations in severity day to day like the ones I just experienced, there are also  fluctuations within each day.

In the morning, the OI is at it's worst.  I am dizzy with blackouts if I stand or even sit.  However, it is my best time of day M.E. wise.  I feel the least fatigued, fluey, and ill.  As the afternoon approaches I start to slide downhill and by 5 or 6 p.m., it peaks.  Two p.m. until 6 p.m. is my absolute worst time of day.  It doesn't matter if I eat, rest, or cry and scream in frustration, this is how it has been since the beginning.  Then, in the evening I start to feel it lift a little.  My point being, as I try to endure the worst of the day, I tell myself to hold on, that there is at least a little relief waiting if I can do a few more hours.

I am curious if others with M.E. have these fluctuations so I've added a poll on the right.

Lets try skijouring

While I was visiting friends, they often went skijouring with their giant black lab.  If you have never heard of skijouring, it means to be pulled behind a dog while on skis.  Here is a photo of me trying to skijour my dog Teagan in the alley behind my friends' house.

It was a 5 min ordeal.  Teagan would feel herself pull in the harness then come running back to me like "what the heck was that?"  I think she might get used to the idea if she walked in a harness more often and got the feel for it.  (Unfortunately I don't have a harness and I don't have the health to take her for a walk...I rely mostly on others for that.)  Most pet dogs are taught NOT to pull on a leash so it is a strange thing for them to get accustomed to.

It was fun to try skijouring anyways.  I was so weak, though, that I couldn't even clamp the ski onto one of the boots by myself.  And it was no surprise afterwards when I had a slew of ridiculous symptoms like leg and arm tremors, muscle shakes, and severe muscle fatigue even though I did almost nothing active in the process and the whole thing was only a few minutes of activity total.  I endured what felt like buzzing in my muscles for hours afterwards.

checking out the snow sculptures

While away, I mostly rested and did my daily PhD writing like at home; however, I did get a few outings.  One day, a good friend from my past came to visit and we went and looked at some of the snow sculptures at the local winter festival.

winter shadows

Another day, I took some photos hoping that they would inspire more art (block printmaking) in the future.

Overall, I'm so glad I made the trip to have a change of space and see old friends.  It was really hard-hitting to watch them live their lives (work, activity, volunteer) and remember that I used to do that too. The contrast was striking.  It's like everyone's life moved on while mine screeched to a stop.  I live off disability and the charity of friends.  While I remind myself often that it's not my fault....that I never wanted to be sick and mostly useless to society, it's still hard to come to terms with.

But despite being face to face with the stark contrast of well people's lives as well as my life "before" and "now", it was great to see friends.  And friends who knew me when I was busy and active and social and healthy.

It travels with you

Well I'm still having a nice restful and enjoyable time visiting friends.  One of my friends had her sled dogs here last night after a race and this morning they howled that ethereal chorus.....so primal and haunting.  It had been so long since I'd heard a sled dog choir.  Awesome.

Despite enjoying things overall, it was a much sicker week this week M.E.wise.  A reminder that when you have a chronic illness, it travels with you....hence the "chronic" I guess.  There is no escaping.  There is no escape.

I am so beyond tired today I don't want to move.  I want to sink into the mattress and never return.  I am achy and not the least bit hungry.  It hurts to breathe, my throat is raw.  I'm snuggling with the dog, hoping this day ends sooner rather than later.

There is supposed to be a storm headed our way within the next couple hours.  What better way to enjoy a snowstorm than from a warm comfortable bed right?  I'm trying to be positive, look at the bright side...not let this sick day, this drained of all energy feeling, suck me into emotional darkness.

That's my story today.

A change of space, a change of pace

 For a change of pace and space, I traveled to see friends.  I'm in the small town where I used to live and work pre illness.  It's nice to lay in a different bed, on a different couch while I do some writing, emails, watch TV.  Also, it's always good to see old friends

I'm adding a few photos here from the last month.  Winter scenes from around home.  I so love getting out in the winter, but it's much harder because I can't just sit somewhere, it's too cold.  So the outings when they happen are very very short.

Winter on the creek

Good news on the c. difficile front, my first retest came back negative (due to false negatives I'm supposed to do three).  Either way, I have a stash of drugs for next time I get it (because it seems that if history is any evidence, I will).  The A.F. is healing, albeit slowly.  I'm still on a very high fiber low carb and low protein diet.  I'm hoping that will change soon.  I am not in pain all day anymore but I still can't stand very long or sit in a hard chair or any chair for very long (to be honest, that's been the case forever due to OI and M.E., but right now it's also due to pain).

forgotten nest

I am back in my old stomping grounds.  It's always a mixed bag when I come here.  Some old friends and acquaintances get offended because when I come here, I hole up, usually at N.'s house and visit one person, if anyone.  People take this personally.  I don't think anyone from my old life here understands how sick I am and that, despite the fact I look fine, in reality I am ill and weak.  Also, people don't know that outings and social events have repercussions that don't hit for 36 hours.

For example, while I went to dinner the other night with some old friends and had a lovely time, yesterday I was in bed most the day. I felt so sick and awful all day that it brought me to tears.

So while I'm here it's a game of regulating activity.  I push too hard in order to remember I had (have?) friends, people who really liked (like?) me and want to see me.  It's really good for my psyche.  Still, if I go too far, push too hard to fit people and activities in, I will hurt myself long term - even paying the price for months. So I am trying to walk that tightrope, play the balancing act.

To be honest, I'm feeling right now that I never want to leave.  I feel so at home here.  I have friends, I am liked, and the stress is low.  I'm sure if I lived here the novelty would wear off and the stress would creep back in, but for now, I'm enjoying this time.

Plugging Away

I'll make this short.  I have been a poor blogger and blog reader lately.  I have been focusing a lot on just managing the pain and my other health issues.  I finally got the Vancomycin for the c. diff reinfection.  But I convinced my NP to allow me to test for it again first.  I don't want to cause any more pain than necessary with the A.F. which is still wrecking havoc on my life.

That being said, other things are going OK.  I've been managing an hour or an hour and a half of research and writing in bed most mornings.  I'm surprised at how hard it is, but I have been away from anything at all structured for so long.  My body, and evidently my brain, are deconditioned.  But I think it's been good for me.  I feel happier knowing I'm plugging away at something.

I am still extremely fatigued.  You know I've had this illness over 10 years and yet at times it still surprises me.  I get up from bed and go into the kitchen.  I stand in front of the fridge with the fridge open and I'm out of breath, I feel my leg muscles starting to shake, burn.  It is so much like when I had mono (the same really).  I take a deep breath and it hurts, feels like poison is coursing through my body.

But surprisingly, overall, I am not near as unhappy as I was in December.  Those low-light blues have lifted, even if my health issues haven't.  My good friend J. sent me a happy light.  I turn it on while I work every morning.  My housemate comes in and pretends she can't see it's so bright.

I've made no progress on my new years resolution, but there is lots of time.  In fact, I may travel to see old friends this week (rather than focusing on attempts to make new ones).  At least with old friends I can be honest and they will be fine with me laying in bed most the day.  If I do travel, I'm hoping to take some photos to inspire more block prints (art).  The big conundrum is, I was in tears of pain much of the afternoon after 15 min of sitting in the car today, so I'm not sure how I can travel 3.5 hrs in a car.  I'm hoping there is a way to do it laying down.

It's more than being "tired"

As you know, there's a lot more to M.E. than being tired.  And the fatigue of M.E. is a lot more like the fatigue and weakness one gets when they have influenza than any other kind of tired.  M.E. is a neuroimmune illness and 'tired' is only a small part of living with it.

That being said, I AM SO SO SO TIRED!

I'm emotionally exhausted with life stuff.  And I am just bone tired.  Is it partly the c. diff? Do I still even have c. diff?  Is it a reaction to suffering 2 weeks of severe pain with the AF? (I think the AF might be finally healing - fingers crossed).  Is it just an M.E. crash?  Am I getting a cold (my throat has been sore more than usual today although that could just be M.E.).  Is it my low calorie diet (to avoid the AF pain) taking a toll on my already limited energy?

It's hard to say but whatever it is, I am really really really tired.  Exhausted really. Completely shot, extremely fatigued.

Adventures

Life has been an adventure lately.

HEALTH ADVENTURES:
Right when I got back home after visiting family over the holidays, the c. difficile came back.  I guess this happens in 20% of cases.  Since then, my NP and the pharmacy have been trying to get another round of vancomycin approved....and we wait.  Copious amounts of probiotic seem to have helped some.  Unfortunately a plethora of trips to the bathroom caused something called A. F.   I won't go into more detail than that, but if you know what it is, you know that it is excruciatingly painful.  One of the worst pains of my life.  So,  I've been doing a very very light diet in order to decrease my trips...it's been awful.  It's hard to sit, hard to stand, and sometimes even hard to lay down the pain is so bad.

What an adventure!!!! It seems to never end.  I really thought I'd solved the c. diff problem only to be hit with the reinfection and this subsequent added joy, the AF.  A double WHAMEE!

EDUCATIONAL ADVENTURE:
Despite the pain and ill intestinal tract, the M.E. hasn't been as bad as the fall was so far.  Yippee! So, my plan to go back and work on my PhD is in place.  Now before you worry about the amount of effort and possible subsequent crashes or relapses, put your mind at ease.  I'm working at home and in bed.  I am starting with a schedule of 1 hour a day and so far so good.  If I can maintain this for a while I will up it to 1.5, etc.  I'm holding my breath, but so far I'm actually enjoying being engaged in the academics.  I mean I managed to do a Masters degree while ill (with accommodation and extra time).  I try not to think ahead too far with this, but if I focus on one day at a time, it's amazing how stuff gets accomplished.  My favourtie quotation since I've been ill is "A journey of 1000 miles begins with a single step".

DRIVING ADVENTURE:
I also drove myself to the border (just over 1/2 hr away) to pick up a gift from a friend.  After sitting for 10 minutes the pain of the A.F. was bad.  It only got worse, but still, it felt so empowering to be out on the beautiful open highway with no traffic and amazing scenery.  I took the dog for company and stopped at a beach along the way to let her run.  I haven't driven that far in ages and I expect I'll crash, but I'm still feeling proud.

ADVENTURES AT HOME:
Things with the drama here continue.  Unfortunately it's not my place to write about the issues here, but they sure add to the adventures.  While I'm an outside party to the happenings, it sure is hard to watch the suffering of others.  Things are often awkward, frustrating, and sad around here these days.

SOCIAL ADVENTURES:
So my one and only new years resolution this year was to broaden my circle of friends here where I live.  I realized recently that I have a very very small support/social network and that I would just love to have a few more friends.  Over the time since I moved back here, it's been really really hard to meet people.  I've made 7 pretty decent friends overall (outside my roommates who are friends from way back) 6 of whom have since moved.  When you say no to invites 9 out of 10 times, it's hard to make friends.  When you live in your house-cave, your bedroom-cave and have limited energy even sometimes to talk on the phone, how does one make friends?  Top the fact that I am now at an age where most people already have their circle.  I don't have a workplace to meet people and my volunteering attempts all flopped because this illness can not be scheduled.  Plus, I don't have a partner or family which is what most people my age are doing right now (raising kids).

Despite these challenges, I'm going to try to find ways to reach out.  I might even try being a little more direct if I get a good feeling about someone with friend potential....e.g. "look, I'm chronically ill, but if you want to hang out sometime and ask me 10 times, chances are I may say yes once and we could have a blast".  One of my long distance friends and I joked that I should post an add "Very nice (chronically ill) person seeks friend.  Must not be put out when most outings are declined.  Friend type activities must be low energy but could include watching movies, drinking wine, talking about books, playing scrabble, eating good food.  Must enjoy cynical sense of humor".  Does that sound pathetic?

Wish me luck.