Here is an example of my current daily routine - I doubt daily how long I can continue at this rate, but wanted to document where I am today:
6:30 a.m. - Supposed to Wake Up
7:00 a.m. - Actually Wake Up (Supposed to leave my house no later than 7:15)
7:15 a.m. - Actually out of bed
7:30 a.m. - Leave for work
8:15 a.m. - Arrive to work (late as usual)
I have a "desk job", but it's highly stressful and demanding. I support multiple VP's, plus have far too many responsibilities.
5:00 p.m. - Normally getting off work (I have been really trying lately to not work any later than this)
5:45 p.m. - Arrive Home and CRASH on couch
6:45 p.m. - Think about dinner, if I cook it's from a box and 15 minutes or less, or fix a sandwich, on a "lucky" night my husband will cook.
7:15 p.m. - Bladder instillation (I am supposed to shower before each one - but I am lucky if I have the energy now to shower twice a week).
8:00 p.m. - CRASH again
9:00 p.m. - Drag myself from the couch to the bed
** Wash and Repeat ** Monday through Friday
Weekends consist of:
Saturday - I will go see my mom, and handle whatever she needs (sometimes its a quick trip to the grocery store, other times I may just take her for a quick breakfast or lunch, sometimes its just to visit) - I stay about 2 hours - and then CRASH for the remainder of the day.
Sunday - I "may" do some light laundry or light cleaning for no longer than 1 hour and then CRASH for the remainder of the day.
Most days I feel like all of my energy is being "wasted" on work. I used to love my job, I excelled in it, but I never intended for it to be the ONLY part of my life and now it is.
I have not yet, spoken to my employers regarding my new diagnosis (they are aware of the previous IC diagnosis), I have been with this company for 7 years and have truly been a good employee but this environment definately encourages total commitment and long hours, to say I am nervous would be an understatement.
My doctor would like for me to reduce my hours to 30 hours per week. I would like to at least reduce to 32 hours a week (I would imagine a Wednesday off would be most beneficial to help me get through the remainder of the week). I am meeting GREAT resistance from my husband on this subject but have pretty much decided it is no longer "his" decision.
So, honestly, how do you approach an employer with this information? The statistics are alarming regarding disability and I'm afraid they will automatically assume that I will end up disabled as well, and therefore be reluctant to accomodate me. I know there are laws, but we are a small company in the US - most of the "laws" do not apply.
Also, the private disability route alarms me, the company we use is well known for denying claims in general - especially "self-reporting syndromes". I am the primary breadwinner in my home, I am truly at a lost.
So, my daily worry comes down to what is the best route for me to take and hopefully maintain some income, and not meet the total CRASH of CFIDS? How do I approach my employer and when is the right time to do that (probably soon since I'm constantly late now)? How do I get family members (ie. my husband) to understand that even though I am "newly diagnosed" (he feels it's "too soon"), that I am literally falling apart and truly need to cut back? Would I be better to try a short break completely instead of reduced hours?