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Wednesday, 26 May 2010

Keeping track...

Here's a bit of reality.... this may be a little random as the primary fatigue is kicking my ass today...

Wow, yesterday included 16 hours combined napping/sleeping after going for my 2 hour OT/physio session. This also takes 3 hours travel time to/from physio... that adds up to 21 hours... (NOTE: the sleeping/napping is not voluntary - my body cannot function & it basically shuts down forcing me to sleep that long - I didn't even have my white noise machine on last night & I live on a very noisy & busy street - I slept for 11.5 hours without waking up!)

I chatted to my OT about primary MS fatigue & it's difference from secondary fatigue (which non-MS people have when they overextend themselves & can fix by sleeping - God I wish I could be tired like that) and we chatted about primary MS fatigue & its management - I am already doing everything I can! hmm... that sucks - I was hoping for some new "miracle"

I met with the physiotherapist - that was awesome - she introduced me to Vestibular Rehabilitation for the dizziness - baby steps, but I'm doing my homework & can't wait to see her again next week :) I have to get some help with the painful MS hip situation... the weakness in my arms is really bad right now too...

It takes approx 15 minutes to blend my kale smoothie (NOTE: I pre-bag & freeze portions which takes me 2 hours to do this one day a week) - almost out of those - so that's something I'll have to do this weekend

I warmed up some home-made soup for lunch - 10 minutes to prepare (NOTE: I make a batch once a week - prep takes me about 1.5 hours - you have to cut slowly when your arms are spasming - it cooks for 3 hours - I usually nap during this due to the fatigue from all that chopping & set an alarm in case I don't wake up - when this is done, add more delicate veggies & it cooks for 1 hour longer - I'll hopefully have some strength to throw in a load of laundry during this hour - but always set an alarm in case I sleep past it)

I made a chopped salad Monday - that took 2 hours & keeps in the fridge for 3 days. {only one small slice this week on my thumb due to a rogue avocado pit)

I woke up from napping and was still experiencing primary fatigue - warmed up some more soup for dinner - now I'm 2 days behind on soup - so I won't have any for the rest of the week... uh oh - no pre-made food left - now I have to set aside energy to cook or spend $$ I don't have to eat at the Vietnamese restaurant near me. I had some chopped salad too - 1 day serving of that left & I have salmon I can broil for dinner tomorrow.

The physio/OT skills I'm learning are supposed to get me to a point where I'll have a bit more energy for working... sure hope so. All this limping around, dizziness, brain fog, weak arms makes the fatigue worse because your body has to work that much harder to send the messages to be able to walk or move your arm or balance or get up off the couch, or get up out of bed... IT SUCKS!

They want me to work 4 hours/day 5 days/week.... this takes at least 1.5 hours travel time plus at least 1 hour to shower/dress - no throwing on a pair of sweatpants & a tshirt with my dirty hair in a pony tail!

Again, I pray that my phone rings TODAY! please, please, please.... I just want to stop the progression & hope to get some of the incidental side effects! :)

The "powers-that-be" were supposed to meet today, but that has been moved to tomorrow.... I have a reprieve of not having to work this week - thank God - because I truly do not know how I would get myself there let alone function at any level once there in the state I"m in right now!

It really pisses me off that it has come down to the wire like this! Why didn't the MS Clinic put me on the list for Optimus (ot & physio) back in September when this all started? I've been doing everything I knew had worked in the past to get me well after an attack and had the support of all of my doctors that I was doing the right thing & would get better in due course... it just isn't working this time... now that I'm finally in Optimus - please let me learn the new skills I need to get me back to work healthily and not be forced onto CPP/disability ..... it's truly terrifying!

1 comment:

  1. forgot to add in the grocery shopping energy I'm going to need to make my food this weekend - frac... I don't know how I'm going to do it?!!