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.

Some Perspective

Warning: I am discussing some stomach issues here which may be a little graphic, so only read if you want to know about my intestinal woes in depth.

It's a tricky thing sharing your life on a public forum.  For the most part, the people who read this blog are fellow sufferers.  However, I also have some friends who read it.  There are things I don't necessarily want to share or disclose partly because it doesn't seem appropriate for one or the other of these audiences.

I've also found that talking about the issues related to family often makes people really uncomfortable.  I wonder if it's because they just don't know what to say?  Or they believe I'm exaggerating somehow there are so many issues?  I think, too, with issues of mental illness which are rampant in my family, people are just afraid.  You know you can't "catch" mental illness by association.

Anyways, I had a decent trip south considering.  I think perspective-wise it was really good for me.  You see my parents are aging and with family mental health stuff to boot, my personal health issues barely make the radar.   Which in this case was good for me.  As I watched one sibling with schizophrenia struggle to deal with the stresses of Christmas it just hit me all the blessings I have despite being sick every day.  I mean it's no party, that's for sure.  However, I just saw how hard this family member was trying to manage and I felt such empathy on the one hand, and gratefulness on the other for my intact mind and lack of confusion about the world in general.

Then I visited one of my brothers and family for a few days.  Despite the fact that I only see my niece (8yrs) and nephew (7yrs) once, or at best, twice a year, I was a complete rock star.  How is it that my niece was so unbelievably excited to have me there?  I mean she'd even bought me presents at a craft sale with her allowance in anticipation?  The three of us laid in the guest bed and played hidden object games on my computer, did art and Lego, I read to them, and we did a little playing outside.  I crashed hard for a few days after, but I loved spending time there.

The travel as always was ridiculously hard, but at least the diarrhea was under control with the antibiotic.  And now that I'm home, I don't feel any worse M.E. wise which is great....although I am very weak and exhausted overall.

OK, so the bad news is that I finished the vancomycin on the 26th of Dec.  The day I flew home (Dec. 31st), infection hit again.  My gut was/is in terrible shape again and some of these recent days I've been in the bathroom at least 10 times a day!  I'm pretty sure it's a recurrence of the c. diff.  So I spent 3 hours at my clinic's walk-in, got another prescription which we later found out needs a new form for funding!  Suffice it to say, I'm so frustrated.  I thought for once I'd managed to find an answer to something (my chronic diarrhea was caused by c. diff) and remove that layer with the antibiotic.

So it's been touch and go.  I've managed to stay hydrated enough not to have to go to emergency.  I'm hoping I can manage the weekend and that next week we can get the drug and I can do another round.  At least today the diarrhea seems to have eased up a bit.  Cross your fingers for me.  One woman at the walk-in said that emergency was so busy (what with influenza going around) that there was standing room only and a 6-8 hr wait.  There is no way I could manage that with the Orthostatic Intollerance and the M.E.