As you know, Bart and I bought a house together, and we’ll be moving to Burlington in July! I read the book “The life changing magic of tidying up” by the Japanese organizer, Marie Kondo a couple months ago, and ever since then, I have been inspired to go through everything in our house and sell / give away ANYTHING that does not bring us joy – that is the main point of her book.
SO, I finally found time to “Kondo” (purge) my closet of clothes on Tuesday after I wrote my final pathology exam. I took everything out of both closets from 12-6 PM and tried every piece of clothing on before deciding whether to keep, sell or donate. I had to take breaks every 30-45 minutes because bending over causes me to experience severe back pain (from the scoliosis), so I’d go lay on the couch for 30-60 min then get back to it. This “art” of decluttering became so addictive that I decided to attack more of it the next day after I returned home from getting my nerve blocks for the pain (bi-weekly appointment), and spent from 3-6ish doing the same. THEN, on Thursday I went over to my parent’s place and purged a bunch of clothes I had there as well!
Here is what I ended up selling / donating:
It should say 21 dresses – I had 2 separate piles and forgot to add up both lol.
Here is what I ended up keeping:
As some of you Canadian readers can see, I own a LOT of expensive “Lululemon” hoodies, and the reason behind this is: A. They are very high quality and last for YEARS, B. Are SUPER comfy and fit me very well, and lastly, C. They are the perfect outfit to wear at home or going out to do errands or go to school in because they are comfy and allow my body to move freely without causing additional pain. All of my fellow chronic pain sufferers can understand the important of COMFY clothing!
Needless to say, this art of decluttering really did a number on my body. I was not able to sleep Tuesday, Wednesday or Thursday night. I have been tossing and turning in EXCRUCIATING pain.
Here is what my “sleep” has looked like the last few nights:
My second coffee before 9:30 this morning to help me make it through class:
My body has flared to the point where every muscle, tendon and ligament in my body hurts even sitting on the couch, let alone trying to shower, get ready, sit in class, and everything else that one needs to do in a day. My fatigue is at a whole new level, I am so exhausted that when Bart called me this afternoon, I was too tired to even open my mouth and carry on a conversation with him for 5 minutes. A healthy person should be doing a minimum of 10,000 steps in a day, which I track on my “FitBit” bracelet / app, however, because I suffer from several chronic illnesses, normally my body can handle a maximum of 5000 steps in a day. The last few days I did over 10,000, which obviously impacted me negatively. Hopefully I’ll be able to survive our trip to Japan in the fall.
Just to give some of you a better understanding of what exactly post-exertional malaise is, I have pulled the following information from good old google university 🙂
How is post-exertional malaise defined?
Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period–usually 24 hours or longer.
How does post-exertional malaise feel?
PEM is not just a feeling of severe fatigue; it is a full-body assault. A physician with CFS says, “My PEM feels like a worsening of my baseline CFS symptoms – more fatigue, headaches, neck/back muscle achiness (but not outright pain), problems concentrating/reading. My insomnia also sometimes increases temporarily and at its worse, my throat hurts and my lymph nodes feel more tender.” Andrew, a person with CFS (PWC) says, “I can’t focus enough to watch TV. Conversation becomes difficult. Any kind of stimulation feels like an assault on my senses.”
The use of the word “exertion” may create the impression that PEM is triggered by strenuous or intense activity, but this is not the case. Patient Sue Jackson says that “Any kind of exertion . . . can leave me, a few hours later, suddenly feeling as if I have a terrible flu.” Some patients need only attempt to make a simple meal or get dressed before PEM descends. Cognitive or emotional effort can also cause PEM. For Andrew, it takes very little to bring on PEM, such as “[s]itting at the computer too long a few days in a row. It seems like not enough bed time and too much activity time can cause it.”
The amount of activity that triggers PEM varies from patient to patient, or even for one patient on different days. “The safety zone moves around,” says another physician with CFS. It is very common for the onset of PEM to occur a day or more after the triggering activity, but sometimes it can happen immediately. A patient may be able to drive to a doctor appointment, but sudden PEM might make it impossible to drive home. Without clear and predictable boundaries to define tolerated activity levels, patients are forced to navigate with trial and error.
The cost of error is very high. As described by one patient, “It feels like somebody flips a switch and every sense of well-being disappears. I have to go lie down, and then I still feel like I have to go lie down! There is no relief.” PEM may last as short as 24 hours, but recovery can take days, weeks or even months. Andrew has found “the more I stress my body this way, the longer the exacerbation lasts.” He notes that recovery from PEM only means returning to baseline, and “I don’t even feel that well before exertion.”
There is no formula for PEM. Patients cannot reliably predict what activities will bring it on, and the duration of recovery does not always correlate to the level of effort that caused it. Ms. Jackson speaks for many patients when she says, “PEM is the worst part of CFS for me.”
Here is a diagram to show what happens to the body of someone like myself suffering from chronic fatigue after exercise, versus someone who is healthy – as you can see, exercise makes a healthy individual feel invigorated and helps their depression, whereas for someone like myself, it causes malaise, fatigue and worsening of my symptoms. In addition to this, exercise causes us not to be able to handle pain as well, whereas, for a healthy individual, it helps them handle pain well – interesting eh? The body is such a complex organism.
It’s times like these where I REALLY wish that my family and friends could get inside my body and really understand how I’m feeling. I don’t like to complain, but I am finding that I’m having a very hard time not mentioning my pain and fatigue to my classmates, Bart and my family. It’s not that I want pity, I think I just need to vent. It’s now to the point where I am having to cry just to get the frustration out.
Although I have a LOT of homework to do for school, my body and mind need complete rest right now. Bart is at his parent’s for dinner tonight, but I’m at home resting on the couch with a cup of herbal tea and the TV on in the background. We have plans to go to the Toronto Zoo tomorrow with my brother, sister-in-law, nephew and niece tomorrow, and I really hope I can go. I’m praying I get a good night’s sleep tonight and the pain and fatigue will have subsided enough to be able to walk around the zoo. Normally when my body is feeling this badly, it takes a few days or a week to feel better, so I’m crossing my fingers this won’t be the case. It would help to lay in a bathtub of Epsom salts (magnesium) but I don’t have any here unfortunately. I will light a candle, and rest as much as I can, that’s all I can do.
I still have more “kondo’ing” to do, however, it is going to have to wait. As much as I’d like to be able to do it NOW, I pushed myself too far, and we see where it led me. Sadly, I probably won’t learn from this because I am much too stubborn to stop, and never know how any activities are going to affect my body. One day I could walk for an hour and I would be fine the next day, and another day I could walk for 30 and my body flares.
I am sending positive vibes to anyone else who is currently experiencing a fibromyalgia / chronic fatigue flare. We can wallow in our pity together 🙂