Long hauler journey...taking it a day at a time.

Many think since I am off, I must be getting SO much done....sadly no.    When I do have energy I use it to focus on some self care and to get some things done that I normally used to do after 8pm :).  When working things like laundry, paying bills either fell through the cracks or I had to force myself to stay up later and then paid for it later with PEM. I don't mind asking for help typically. I think what's been hard to ask or accept help this time has been that these are things I could do, that I want to do, that ..... My parents have been asking what they could do....  I finally accepted some help with outdoor work.  It feels wrong that my parents were cutting back things, pulling weeds, and cleaning up the outside while I did a bit.  That day I puttered and probably did too much but it felt so weird not to help, not to do very basic thing I could do before.  The guilt is all mine, not from my parents.  They wanted help, offered to help....I ...

 The strange thing with this journey so far it is predictably unpredictable.  There are certain things I have learned from others, web sites colleagues around symptoms, around PEM(see other post), around how it can be very cyclical.  There are some patterns and then there aren't.  There are symptoms I had early on and new ones arriving this week...which I wasn't expecting the end of my week 4 being off. Early on relapses mimicked by COVId days...fatigue, headaches, no energy, some cold symptoms.  After 2 relapses the biggest things sticking with me were the fatigue(whole body heavy, shaking fatigue and brain fog (driving to work I had to REALLY focus). Over the summer this cycled in extremes with the main constants being fatigue and brain fog.  End of summer into fall, maybe due to things getting busier and having less rest....new ones popped up.  Nausea with my fatigue, after having a cold, the cough has stuck with me and more labile (emotional and te...

 As I think about it more this blog will be informative at times but will honestly be more a journal for me, to track how I am doing and get things out.  If you are here reading, great..I hope you get something out of it.  Leave me a comment so I know you are here. Anyway, I am struggling this morning.  My last post I wrote how sunday was a rough day physically...today is both. The boys were home yesterday and overall we had a good time....with the usual discussions about chores.  I tried to rest as I could..but it's tricky with them. My sleep has been off and on.  Two nights ago I woke up at 3 am and then never really got back to sleep. I read, did meditation....I don't know what it was.  Last night was better till early this am when I and the boys (who both crawled in part way through the night) woke up.   Such is life and normal, but my sleep is huge for me. So, this morning I took it slow..I finished another book, had my green tea and an ...

 It's been a busy-ish couple of days both emotionally and physically.   Therapy sessions one day, riding a golf cart another, kids home, sick kid, hockey.  These weren't all in one day but spread out over 4 or 5.  A few naps, a few not great sleeps....trying to pace, sometime successfully, sometimes not. I am sitting outside in the sun watching the boys play hockey, wishing I could join them.  Someone walking by would think I am all good, maybe lazy and on my computer.  Really, I am tired, my hands and insides feel shaky, head is pounding, stomach is upset.  If I close my eyes, I spin.  I need to lie down soon.  I have over done it.     I am experiencing PEM or post exertional malaise.  This is common with long haulers....   PEM is defined by the CDC as:  Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 4...

 Dennis decided to take the day off today since he wasn't super busy at work and do something together. When I woke up exhausted this morning I wasn't feelin great.....my body didn't even feel like yoga, let a lone a hike.  (Just typing this makes me cringe and tear up....this is NOT me) .  With buses being cancelled, Dennis drove them and I was able to lie down for a sleep.   Pre COVID I wasn't a big napper (other than when pregnant..and NO I am not).  I would occasionally but I had too much to do and had a hard to often falling asleep.  Now, when I listen to my body, stop and rest...it's amazing.  As soon as I was in bed and closed my eyes it was like I just sink into it.  I don't know if any of you have ever done reiki or meditation even, but when I close my eyes now and go into the zone or zen or whatever you call it..I see colours, spinning and moving and....it's calming to me (I also did not take any recreational or prescribed drugs:))....

 After my first "relapse"  I paired back, more than I did the first. I stopped my work outs, slept in more, went to bed early.  I rebounded a bit and was able to feel more normal but still quite tired.  With vacation coming up, I was hopeful a week away would help.  Slowing down, sitting on the beach and reading definitely helped. I started some gentle yoga by the water, I slept more.  Yes, it's hard to totally relax with two boys but I did my best.    I was really hopeful this time away from work to decompress was all my body needed to be me again.    I felt better and more rested yes, less jumpy at the kids and husband,yes....but i still had the whole body, heavy leg fatigue and the headaches.  Just a short walk to the beach I could feel it in my legs. I tried a bicycle ride I did 2 years before there and had to stop part way in as I didn't think I could do the whole thing.  I realized I had to still be patient, I still had t...