Thursday, September 20, 2012

Hitting the Wall and Craving Comfort

I hit the wall last night during a book group meeting and had to abruptly leave in the middle of our discussion.  I literally ran to my car, feeling as if I would fall apart if I didn't get home, to my bed, as fast as possible.  I felt as if my entire nervous system had short-circuited.   Up until then, it had been a pretty normal - even good - day for me.

Tuesday's nasty wet weather had passed through, leaving my extra aches and exhaustion behind with it, the sun was shining, and I felt good.  I felt like myself - able to concentrate and focus on what I wanted to do, able to write, even a bit energetic.  I  took a longer walk than usual - a whole 45 minutes!  I wore my heart rate monitor and carefully stayed below my AT, but it was so nice to be out in the sunshine and feeling free.

I took my daily nap after lunch and jumped up at 3:15 to go meet my son at his soccer game.  I was a little tired, but that's normal when I first wake up.  I found the school and saw that their soccer field was a long, long walk from the parking lot, so I carried my chair and my bag over there and sat to watch the end of the game and chat with another mom.  Craig and I came back home, and he wanted to watch TV, so I went up to my bedroom so I could finish my novel for book group.  As I crawled into my bed, I realized I was feeling pretty achy, but I figured the rest would help me. 

At 6 pm, I still hadn't finished the book (20 pages to go!), but it was time to meet my two closest friends for dinner.  I was a bit worn out but attributed it to hunger and the late hour (we usually eat an early dinner to address Craig's and my low blood sugar).  I drove over to the restaurant in my old VW convertible, enjoying the mild weather and fading sunshine.  I thoroughly enjoyed dinner with my friends and getting caught up.  I felt the beginnings of a headache but attributed it to waiting too long to eat.  I took 1 Sudafed, hoping it wouldn't be too much too late to disturb my sleep, and the headache faded a bit. 

The beginning of the book group meeting was great.  We had a nice turn-out, and everyone had enjoyed the book.  The discussion was lively and interesting.  I felt fine at first, but gradually, symptoms began creeping in.  My headache started to worsen.  My legs began to feel achy - just a bit at first, then worse and worse.  My face started to flush and I felt hot all over (obvious OI symptoms).  I tried elevating my legs, I drank lots of water, but nothing was helping.  I was watching the clock now.  We had started to discuss choosing our next book, so I thought I could make it to the end of the meeting.  And, then, suddenly, I couldn't.

That phrase, "hitting the wall," is the perfect description.  I just suddenly felt as if I could not stay in that chair for another moment.  I abruptly stood up, grabbed my bag, made a quick apology, and fled.  The top was still down on my car, and it was a cool evening, but the chill felt wonderful to me.  I tore out of the parking lot and drove home as quickly as I could.  I took big gulping breaths of the cold night air, feeling as if I'd been suffocating and suddenly had oxygen again.  I got home in record time and went right up to bed.  I wanted to get into comfy clothes but couldn't even manage that at first.  I crawled into bed and under the covers and started sobbing uncontrollably, both from pain and discomfort, as well as relief.  I was shaking.  I've never been so glad to be home in my life.

When I calmed down a bit, I limped over to the dresser, peeled off my clothes, and pulled on my oldest, softest pajamas and big fluffy socks.  I crawled under the covers again and picked up my book, thinking over and over how glad I was to be home.  I was craving comfort - anything warm and soft.  I just wanted to be a child again, to have someone put their arms around me and comfort me, tell me it was OK now, I was safe, and pat my back.  I asked my husband for a cup of mint tea and slowly relaxed.

I woke this morning feeling as if someone had thoroughly beat me last night - sore and achy all over, exhausted.  I am still craving comfort - wishing my mom were here to make me homemade custard like she did when I was a kid.  I'm wearing soft yoga pants and an old t-shirt, bundled up in a fleece blanket, and still aching all over.

It was an unusual experience for me just because I can normally read the warning signs better than that.  Even though the symptoms came on gradually over several hours, they seemed to come from nowhere.  This is THE defining characteristic of ME/CFS, right?  These sudden crashes - that is the only word to accurately describe it, a crash.  Who knows what caused it this time?  The long walk in the morning?  Doing too much all week?  The extra walk at the soccer game?  Or perhaps even a viral trigger my son brought home from school - he spent 2 days earlier this week in a mild crash from being exposed to something at school.

Sometimes, it doesn't matter what caused it (and certainly, you can drive yourself crazy trying to figure it out), but isn't it amazing that this crazy illness can still surprise me like that after 10 years?  Ambushed.

Maybe I could make custard using coconut milk....

9 comments:

  1. Anonymous2:08 PM

    So your face actually turns red when you have an OI episode or does it just feel warm? I ask because I get a lot of flushing but did not connect it to OI issues. Hope you are getting rest and doing better.

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    1. Oh, the flushing is definitely OI! Some people get really pale and some turn red - it all has to do with the blood circulation problems and poor control of BP and HR. My son and I turn red-faced. Two local boys I know turn white as ghosts. But it all stems from the same basis - difficulty maintaining steady BP and HR.

      Sue

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  2. Sue - i literally just signed into my blog ready to write a post titled - hitting the wall - and i read yours first! so perhaps i will just share yours and save myself a bit of energy :) I am so sorry - I know that feeling all to well - have been dealing with minor pancreatitis - lots of stress - lots of decisions - make for a not good combination - as i read your post and i know how awful it feels - really I KNOW - take time and re-read it and LOOK at all you did that day - wow!!! I hate that you had a crash - but be kind and gentle to yourself - you are going through a lot of changes with letting your little jami fly and all the work to get him there - i am so impressed - i hope you are having a much better day today! love, heather

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    1. Thanks, Heather - just reading your kind, supportive words brought tears to my eyes (in a good way) and made me feel cared for. Thanks :)

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  3. hi again sue - just so you know i put the link and text to your post on my site - if that's not okay just let me know - thanks, heather

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  4. This sounds a lot like a panic attack. I used to get these, with all of the symptoms (had to escape quickly, bright red face, aching limbs, craving cool air, pounding heart). These would come out of nowhere and for often no reason - and it rarely happened WHEN I was stressed, but often the day or week after. Sometimes exercise would trigger it, sometimes simply being in a room where it would be awkward if I just got up and left (such as a meeting). Sometimes in that after-period after a big event was over, such as receiving an award in front of lots of people (oddly enough, in the period when I was feeling relieved and proud and happy). I wasn't depressed, had many friends, a boyfriend, and was optimistic about my future. There wasn't a clear reason why this just started up out of nowhere. I haven't had any attacks in about six years, but they occurred before coming down with CFS following "mono".

    I'm the medical student who has recovered from CFS with Cymbalta...an interesting link. I actually believe that at least for me symptoms are at least in part "in the head"...meaning affected by emotions, or a chemical imbalance in brain chemistry (not made up!). I had the same symptoms as many people with CFS: exercise intolerance, sleep disturbance, pain, especially "tender point" pain, that awful feeling that something is terribly wrong with you - and this all happened overnight, like many people with CFS. I have occasionally wondered if the syndrome was completely separate from the earlier attacks or if there was some link. Who knows?

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    1. Studies show that most people who have "abrupt onset" CFS had recurring but brief episodes earlier that indicated what was coming (if anyone had known to look!!) For me, it was a mystery "virus" about 2-3 times a year - symptoms were just a severe sore throat and total exhaustion (sound familiar?) - my strep test would come back negative, and I would sleep for 4-5 days, then feel fine and resume my normal life. Those were my pre-CFS episodes.

      This was definitely CFS/OI, not panic attacks. It was 100% physical. Emotionally, I really wanted to stay for the end of the meeting but my body just gave out. I guess I pushed too hard yesterday and did too much.

      Sue

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  5. Hi Sue
    Felt the need to respond today as you have described what has happened to me. I was fine. Doing great, noticed a few symptoms coming back, but no big deal. And then went from being fine to being hit by a truck. Bam. Still recovering and grieving. I can relate so much to what you are describing. Writing about it now.....hope and pray you are your old self again soon! Stay warm in your place of comfort.

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  6. I'm so sorry and I know exactly what you mean about being surprised 10 years in. It's like you think you have the "rules" figured out, but then it just hits and wham, a crash. On my crash days I'm still surprised at how sick I feel. I hope you feel better quickly. Snuggle in for a few days...nothing but warm baths, a good book, a few movies.

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