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!

keeping track...

So MSS suggested I start documenting my days since I am appealing the decision of the "independent" third party neuro who thinks I am able to work 4 hours a day & do rehab (and apparently take care of myself, get to from work, to/from rehab etc) with high level of fatigue & brain fog I have.! My Occupational Therapist at the MS clinic is supportive of me & we will be doing more testing later this week. She tells me my fatigue is a 74/80 which is awful! You want a low number on that test! LOL
OK... here it goes:
Had my usual 8 hours sleep last night. (NOTE that my bedroom is set up for sleep - no light can get in, cool temperatures, well humidified, raised bed to help blood flow & I sleep with a white noise machine in the room)
Woke up & did the body check... MS hug in lower left arm & general weakness in left leg, muzzle area of face is numb, eyes are weak & slow to get going, have about 65% energy
Got out of bed, a little dizzy.
Made a green tea, all organic kale/blueberry/strawberry/mint/touch of agave smoothie - thick green goodness :) (NOTE: i follow the recommended diet found at www.direct-ms.org)
Made brown rice toast with 100% fruit blackberry jam
Took all of my 'with-food" vitamins etc as recommended at www.direct-ms.org
Went on Facebook to see what's up with everyone... my MS friends are all hanging in there & supporting each other - nice to see
Checked email
Looked around my condo - laundry is sorted into 12 loads (note: I have been unable to finish a complete load of laundry in row for over a month due to fatigue - I have one wet load in the washer from yesterday - didn't have the energy to hang it up - will do that after putting it through the rinse cycle again right now) Good thing I have a lot of clothes! LOL
My sheets need changing - that job always kills me fatigue wise... must get that done now before the fatigue really sets in
It's going to be a high of 26 degrees celcius here today - that's not good! I can leave my condo unit door to the hallway open & get a flow of air from the pressurized hallway in through my unit - it's kind of like having air conditioning. Good thing I don't have to go outside today! Heat makes me feel like I have wet cement legs & it exacerbates the fatigue symptoms significantly.
I'm not going to think about all that I have to do to get prepared to go back to work - but I will document it here...
- prep food to freeze in portions as it's hard to follow my diet at restaurants & I won't have any energy to cook
- prep smoothies and freeze in portions so I can sleep longer
- find work clothes that still fit me after the prednisone weight gain (20 lbs) (I've lost 8 pounds - yay) I only weigh 155, but that's fat for me & I don't have any money to buy new clothes
- clean up from last night - wash yesterday's dishes that don't go in the dishwasher, put empty cans of no sodium club soda in the recycling bag, put away box of random costume jewellery that I brought from my dad's house (I still have a lot of furniture & personal goods stored at my dad's from over a year ago when I bought my condo & have been too fatigued to sort it all out to get it moved to my condo)
Lunch will be fresh organic pineapple (anti-inflammatory), organic chicken thighs, spices & non-gluten pasta...hmm have to be able to get that frying pan washed before cooking this... going to rest for a while
My arms are really getting weak & I'm going to have to stop typing soon... fuck I hate MS!