“Just go home” – the struggle chronic illness sufferers have with this advice

First, before I get into the real point of this post – holy cow, it’s been a long time since I’ve posted…I really need to be more regular (for my own sake – it’s so good for me to organize and communicate my thoughts in this way).  So, first, a couple of really quick updates.

Update #1 – I wrote about my experience with my Rheumatologist heading towards one treatment for months and then at the last appointment acting like he’d never even mentioned it and was almost shocked that I’d been expecting it and then wrote in my medical file that he believed my chronic fatigue was due to depression – I’ve fired him and will be going to Philly to see a Sjogren’s specialist in December!

Update #2 – I wrote about my daughter’s alopecia areata – We took her to a peds dermatologist and she gave us a steroid cream and the spot is filling in (but it definitely stayed completely bald in that spot for 4 months until we got to that appointment) – so for now we’re happy.  We have no idea if it will reoccur or if it’s a sign of a future of autoimmune issues with her or not.  It’s a wait until it happens…or doesn’t…kind of thing!

So now for the “new” post.

Part of why I haven’t written in a while is that I’ve been having chronic headaches.  For about 8 weeks now, every day.

It ebbs and flows from day to day, just like all chronic pain and fatigue issues.  On the best days it’s a “I definitely notice it’s there all day but I can function fairly normally – at least normally for me” pain.  Some days it’s a “this pain is right up there with being in labor” kind of pain.  But no matter the intensity, the headaches have been there from before I even open my eyes in the morning until I go to sleep at night.

I spent the first 4 weeks pushing through it and in general being a grouch to those around me.  I’ve written before about symptom creep and the problem chronic pain/fatigue sufferers have with recognizing just when something got so bad and how did I let it go this long to get to this point.  We’re so used to daily pain and discomfort that sometimes “one more thing” just gets thrown in there with the rest and we just deal with it as “normal” until one day we wake up and realize “wait, I’ve had a headache EVERY DAY for over a month!”

Quick summary of what’s happened – called general practitioner after a month of the headaches and was seen.  Lab work, MRI scheduled, had me try Excedrin (didn’t work) and then Imitrex (prescription migraine meds – also didn’t work).  MRI normal, referred to neurology for next Tuesday.

Yesterday I woke up and it was a “pain as bad as being in labor” day.  I knew it the minute my alarm went off(6:30am) and it never let up until I went to bed at 10pm.

Any slight movement of my head hurt.  Walking down the hall – each step I took made my head feel like it would explode.  I kept tearing up while sitting at my desk just from the shear pain of it.  My boss stopped for a chat and even asked me what was wrong because I clearly didn’t look ok.

Throughout the day many friends, coworkers and other very caring, very nice, very sympathetic and well-meaning people said “I’d just go home and rest!”

Yes, if this one day of excruciating pain was in isolation – or if I had the flu or a cold – or any other acute problem that I new would be better in a few days and then be gone, absolutely I’d be out the door.  I’d use that accrued sick leave and head home to bed!

But this isn’t acute.  If I used sick leave for each day that I didn’t feel good I’d be out of accrued leave a long time ago.  I can’t stay home every day that I don’t feel good.

I’ve described it this way before to people and I think it’s a good way for people to wrap their head around it:  Imagine you had the flu EVERY DAY and you knew that you’d have it EVERY DAY and that although some days might not be as bad as others, you knew it wouldn’t ever go away for real.  Yes, for a few days you might stay home and take it easy.  But eventually you have to get on with life – you have to take care of your kids, do your job, participate in society in even the most basic ways.  So eventually you HAVE to go through life resisting the urge to just go home and rest.

OK, you’re saying “I’m with you so far – but if your head was THAT bad yesterday, clearly you should’ve gone home that day…maybe not every day you don’t feel good, but at least for that day!”

Yeah, except I didn’t know how I would wake up today…or tomorrow…or next week.  What if that excruciating pain was to be my “new normal”?  Remember symptom creep – these symptoms do increase in the number of symptoms you have, the frequency and the severity over time.  What if this was upping the anty on my “normal”?

My thought process is – if this is my new normal, I can’t go home because I can’t go home for it every day.

And even if it isn’t this bad every day, what is the percentage of days that it would be acceptable to go home?

I earn 3.7 hours of sick leave in a 2-weeks period.  That’s 3.7  hours every two weeks to take care of all my doctor’s appts (did I mention I’m headed to Philly for dr’s appts in December – that’s at least three days worth just for that one trip – travel up, have appts and travel back – 24 hours of leave wiped out just for that), any time I need to stay home with a sick child (I do have a 9 and 11 year old, and although they’re overall very healthy, they do get sick each year and need to stay home a few days throughout the year) or take them to their dr appts, AND cover me being actually “sick” and going home myself as well.  All of that cannot happen for a person with a chronic disease in 3.7 hours every two weeks.

And not even worrying about sick leave balance – what are the percentage of days I’m willing to give in and check out and go home and rest before I’m not able to function in my job, my life, the lives of my children and husband and other basic requirements?  How many days am I able to check out until the backlog because simply overwhelming?  How many days can I say to my kids “Mommy has to go to bed because I have a killer headache” before I’m simply not doing my job as a mommy?

So as much as I’d love to take the very well-meaning, kind advice to “just go home and rest,” I have to balance all of the ramifications of knowing that it’s not a temporary, acute illness that I can put my life on pause for a few days, get over and come back to catch up on everything.

It’s an “each day I wake up and I don’t have any idea how I’m going to feel today or tomorrow or the next and I have to be careful because if I waste too many ‘check out’ days now what happens if tomorrow or the next day is worse and I’m stuck dealing with it because I ‘checked out’ when it wasn’t quite as bad?”

Just one more way that chronic pain/fatigue/illness adds a whole other level of worry and complication to the lives of those affected by it.

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