The secret of change

2016 is going to have a lot of changes, whether I fight them or not.  This post is my first step in trying to focus my energy on building the new.

Late last year, I was diagnosed with chronic fatigue syndrome.***  It has been so difficult trying to maintain a normal life dealing with these symptoms (of which I have nearly all of the ones the CDC lists), not to mention the frequent migraines which may or may not be related. There are a few other unknowns about my health right now, too, that we haven’t sorted out yet, but hope to have diagnoses and stragegies for dealing with soon.

Waking up every morning, after a terrible night’s sleep, just as exhausted as you went to bed day after day isn’t only physically draining, it’s emotionally draining, too.  While it may seem that I’ve been short of patience or extra bitchy from time to time, usually it’s just because I’m too exhausted to pretend I’m fine right then.  Or maybe I’m on day 3 of a constant headache and can’t handle one more thing at the moment.

So much of the brain fog that I (and for quite some time, my doctors) were attributing to post-concussion syndrome may actually be from CFS.  The emotional strain of not remembering what I’m doing, if I paid a bill or not, double checking that I sent the right email to the right person, did I forget to go to the store again, what did I forget to put on the to-do list, wondering how I arrived at a destination but can’t remember how I drove there… makes everything worse and tires me even more.   Or even knowing I have a long list of things to do – things that I legitimately WANT to do – but I can’t drag myself off the couch or can’t accomplish without risking the headache turning into a migraine is so frustrating.

Seriously, the brain fog might be the worst part.  Looking at things 2, 3, 4 times before you process or remember them.  If I don’t write it down, I may never remember anything happened. Not like, ‘Oh yeah, we did talk about that & I forgot!’ (which has always been me to an extent.  I’m ADD, I own it); it’s more like, ‘no, I don’t remember anything like that ever happening in my life… ever. Are you sure that wasn’t your other wife/employee/friend/family member?’  This has a really great way of making you feel like an idiot all the time.  It also has a great way of making you feel like you don’t know who you are anymore.

Also, brain fog + eye problems = constant pain.  I have 3 different pairs of glasses with 3 prescriptions.  Some days, I need the blue rimmed glasses; some, the teal rimmed glasses; some days, the readers I got at Wal-greens for $5; some days, none of the glasses help and my eyes hurt all day; some times, like right now, I am fine with no glasses at all.  I’m not crazy; I don’t like to accessorize my glasses to every outfit.  I legimately don’t know what my eyes will want/need from day to day or from morning to evening.

Everything in my life has become an equation – a balancing act.  Do too much today and I pay for it for 2-3-7 days afterwards.  Every act, even as small as taking a shower in the morning, has a cost.  If you aren’t familiar, read this great post on the spoon theory from ButYouDontLookSick.com.  The first time I read this, I cried.  It perfectly describes the last few years of my life and made me feel a bit less crazy.  Stress takes spoons, physical activity takes spoons, emotional engagement takes spoons, social gatherings take spoons (which sucks since I’m an extroverted personality type and need socialization, just like a puppy), hell, shaving my legs takes spoons… which I haven’t sacrificed the spoons for since New Years…  I’m actually writing this post, because doing so is much easier than explaining it in person.  That usually starts with tears and snot and ends in a headache, which I amazingly don’t have today, so I’m not pushing my luck.

I’m so thankful that my husband is patient and helpful.  I’ve been dealing with these symptoms for over 2 years.  In that time, he has taken over the bulk of our housework inside & out, the cooking, the shopping, the cleaning.  When I can help, we go/do together. When I can’t, he goes/does without a second’s hesitation. Without his help, I don’t know how this house would be fit to live in.  I’m so amazed he chooses to stay with me, challenges and all, knowing this may never get 100% better.

Now that we know this isn’t something that is treatable, only manageable, we have had to make  changes.  I’ll be working part-time for the foreseeable future and am in the process of off-loading the most stressful of my work responsibilities (thanks to my understanding employer); I’ll be starting some physical therapy in addition to the yoga I’ve been integrating into my routine; and we’ll also be researching as many holistic approaches into my treatment as possible (because y’all know I’m a hippie and throwing drugs at me and sending me away isn’t acceptable).  I already have regular chiropractic adjustments and massage therapy; we have recently added acupuncture and may be adding nutritional therapy in soon as well.  We have more lifestyle changes to make to try to keep this from being worse.  Many people have it worse than I do and can barely get out of bed; we needed to address this before I got to that point.

I’ll be continuing to sew as I’m able for my Etsy shop and I’m still up for Jamberry parties via social media, as those I can control and spread out the work well in advance with the help of some cool software.  Thanks to any of you who have supported me in that way.  With my reduction to part-time, those little purchases will really help our family.

This is my new normal.  I’m trying to embrace it – knowing that I wasn’t going crazy has been a big help.  As The Hubs and I enter this time of radical change, I have to focus my energy on how this will make us both better.  Because Socrates said so.

Please take a few minutes and read the links about the spoon theory and chronic fatigue above.  These chronic disorders are becoming more and more common, but don’t always have physical signs.  Please be sensitive – trust me, it’s hard looking fine, but feeling awful.  Hearing, ‘but you don’t look sick?  Maybe you just need to take an evening and rest’ just makes it harder. I decided to write this post & ‘out’ myself as a spoonie to try to help people understand this disorder a little better.

Until later –

d

***Please, before anyone makes a joke about our relative levels of fatigue in correlation to my childless status and their parental status, just don’t.  (This has happened, when I have tried to answer the ‘how are you doing?’ question from friends and family honestly.)  Please click the link above, read what this condition is actually about, and try to flex your empathy muscles just a bit.