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
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!