How do I negotiate this working life while so ill? I just don't have an answer to that. I sit here with a low grade fever, painful lymphs, sore throat and flu/sick ache and wonder why I'm doing this to myself? Honestly, I can't see anyone who isn't ill with M.E. grasping the ludicrous nature of what I'm doing. There is no other known illness out there where activity (whether it's one that's positive or enjoyable or not) makes you directly and literally sicker. (And for naysayers this finding is supported by research).
And yet if you asked me to quit I'd say no. I'm willing to suffer some level of consequences in order to participate in this work. In fact, there is almost no job in the world that I could come up with that would be more ideal. I get to work (at least with the 12 week courses) somewhat flexibly from home in bed. That said, if I get much worse I'll have no choice, but for now, I'm sticking with this extremely limited sick working life while I hold on by a thread.
I'm a weird duck. If a (relatively) healthy friend encouraged me to push through and continue to work I'd be hurt. It would feel like they didn't care that I was choosing to jump off a 6 foot diving board into 6 inches of water over and over and over. Or similarly they might as well encourage me to run head first into a brick wall over and over. "But you're getting satisfaction out of it right?" The problem with M.E. is you can't see metabolic disfunction, or immune symptoms, or icky flu breathing ache, or lightheadedness and blackouts from the outside. All of the damage and suffering from pushing is invisible (although my roommate sees it to a degree). I do know how lucky I am to even have friends left, let alone supportive ones.
Luckily, I've still had some short outings here and there over the last month. Not too many weeks ago my dad and I took the dog to a local dock and took photos of her jumping. I love watching her swim (I also love swimming). Then, there is a local overlook with a memorial to Terry Fox (a Canadian hero) nearby. One afternoon my dad and I drove over just to look at the view and have an outing.
I hear you, I feel for you. The "work" dilemma is amongst one of the many, and the most difficult to let go...even under the "best" of accommodating circumstances.
ReplyDeleteI commented previously when you were dealing with your dad's ER visit...we are in the same boat with an aging father. Both my spouse and I have ME/CFS and are for the most homebound.
We have two dogs, which keep us entertained (they are our social life)! So I love your dog...thanks for sharing the dive off the dock!
We also became ill around the same time frame (2000 for me). Do you have an email address?
Perhaps we can give each other moral support/share dog photos/etc. (and I grew up in the Midwest and was very athletic)!
Hang in there. It really is incredible that we have this debilitating illness where we look healthy and activity makes us more ill. During those precious hours (sometimes minutes) when you feel a tad better....its hard to grasp how quickly one's body can flip the switch in the blink of an eye.
Got it! Thanks.
ReplyDeleteI wrote a long comment. If I don’t see it on your blog in the comments does that mean you didn’t get it?
ReplyDeleteHi Upnorth,
ReplyDeleteI found your blog about a week ago and have been reading it during my recent “crash”. You do a great job in writing about the day to day struggles with M.E. and POTS.
I have M.E., POTS, small fiber neuropathy, Multiple Chemical Sensitivity, and Rosacea. I got them in that order. I have had M.E. for 9 decades. Well actually it’s 9 years.... its FEELS like decades.
My ground zero was a flu shot I received in October of 2009 when I was 38. Prior to that I was a single working mom who worked out three times a week.
The worst part of POTS for me is my very low blood pressure. I think this is why I cannot tolerate medicine because it lowers it even more (like you). I have tried Flornif (it makes my flu symptoms even worse), midrodine (I don’t mind the scalp tingling but it makes my fatigue worse), mestonin (lowers my BP which is unfortunate because it helped some of my symptoms) and most recently Ritalin (gives me bad anxiety plus I only have one working kidney and it is processed via the kidney). I do phone consultations with a POTS specialist but I cannot tolerate the medications so I wonder what’s the point? I have to pay out of pocket for the consultations.
My POTS was confirmed via a tilt table test and a Qsart sweat test. They also did blood work and some of it was sent to the Mayo Clinic. Which of course showed nothing as usual.
All this to say your not alone in your suffering and I get you. I think you are a very strong person, you amaze me! I cannot believe all you do. At times you may not think it seems like much but your fellow M.E. and/or POTS sufferers know it is a lot!
You are such a wonderful daughter. Your limited energy (or pushing through) is SO precious and you give it to helping your dad time and time again, wow.
I enjoy your pictures, prints and your adorable dog. Your blog is great. Thank you for doing it.
Hi anonymous, thanks so much for your story and comments/feedback. I'm glad you enjoy my blog. Sorry I haven't written much lately...as you know from reading I'm trying to work part time, help my dad, and manage these illnesses. In another week or so things should slow down and I will be posting again. I also 'get' how frustrating it is with drugs, the few that target the OI/POTS make us worse. All and all it seems like we are on our own managing the illnesses. Take care.
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