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?
CFIDS sucks!
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Hi Dawn. Only just found you. I recognise your 'schedule'. It was simiwo disabled to mine when I was diagnosed 9 years ago --- except we had two small children then and wo disabled parents.
ReplyDeleteYou HAVE to look after yourself now regardless of what anybody else thinks -- even your husband. It will be hard because you are obviously dedicated, responsible and caring but if you don't take the bull by the horns and reduce your hours drastically and pace you are much more likely to stay poorly: hard to say but it's true. It is always hard to go your own way and stress, in itself, is tiring but it's better than dragging yourself around every day. Read all you can about pacing, change diet and look at oter aspects of yoru environment ---food, chemicals in the home (even perfumes, shampoos, cleaning materials etc )
I would advise, if possible, some time off work to recuperate a bit and then, if you feel up to it return to work but at much reduced hours.
Do take care of yourself
I agree with Cusp. You are at a really critical stage of CFS, and what you do with it now will determine how far you fall down this mountain. The harder you push, the farther you fall. Pacing is the most important and most effective way of treating this disease.
ReplyDeleteCusp-
ReplyDeleteThank you so much for your response. That nagging voice in my head tells me the same things you have said, I know it's true. Thank you for the advice regarding taking some time off and then returning. I am falling fast and I know it. By Thursday of each week, I might as well be a log sitting at my desk, because I have no brain power left. I often catch myself "napping" at stop lights. I know I am in trouble. I truly appreciate the time you took to comment.
Shelli-
Thank you so much also, falling down the mountain is my biggest fear. I feel like I am dangling on the edge most days to be honest.
You are truely in an awful spot :( However it may not be too late for you, but you really do need to stop and think about it all. Obviously being the bread winner makes things very difficult but if you need to maintain that position within your family then you really do need to make big changes right now. Another week could make all the difference. I know with me it was just half a day that mad ethe difference. I'm sure if I had just stayed home on not gon eto work that final day I would no have fallen over th edge, but I was stupid ...
ReplyDeleteLastly I wanted to say to you that this really is such an odd thing that happens to the body, it's likely that even the people who are closest to you wil not understand or be able to see just how sick you are. Do not push through just because the people you love and trust don't think you are ill. You cannot expect anyone else to understand, to them you probably don't look all that different to the 'normal' you. Best of luck. x
Lee Lee -
ReplyDeleteThank you - being the breadwinner does make things very difficult - and while I don't necessarily WANT to maintain that position, realistically there is no other option currently. I do agree that it's hard for even those closest to me to understand how ill I am and that I do appear somewhat normal overall.