Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Friend asks "How Did You Cope When You Were So Sick?"

One of our members is really, really sick right now, too sick to even come out to a Group meeting!  She reached out to me today through e-mail and asked me, “How did you cope when you were really sick?”

I wanted to respond right away because when you are in that space where there is no hope, it is a scary place!  And something (or someone) needs to throw out a lifeline and fast! But if my dear friend was feeling this way today, who else might also be going through something similar?  Without the ability to even drive themselves to this Saturday’s face-to-face group meeting, how can a lifeline be thrown?  I knew I would have to blog my response to my dear friend in hopes of reaching another who might also be at a very low point. 

So many responses came rushing into my head all at once.  First, let me admit that I am in a “bit” of a flare up myself.  By no means the lowest of my low, but then not at my best either; when last summer I felt well enough to embarked on a summer job (if only for a few brief weeks).  I only mention this because, I can only share with you what worked for me…  and since I find myself needing a cortisone injection a week ago for joints that all swelled up overnight, as well as having added Methotrexate to my Xeljanz in January…  well, let’s just say I could use a little of my own advice!.

It was April, 2008 and I was just sent home from my job and told to not return until I was “100% healed” from an arthroscopic knee surgery three months prior.  Yeah, that’s for another blog ;)

The stress of not having any sick leave to use, combined with a federal job not paying into State Disability meant that I would go from a full time salary to $0 without warning.  It was seriously more than my body could handle.  (Remember my husband had gone out on disability in 2005 and I had to go from part-time with the company to full time to cover his $0 salary because we worked in the same place).  In order to qualify for my disability pension, I would have to be so disabled that my doctor anticipated that I would be out for more than 12 months.  But I was sent home over a limp from recent knee surgery!  Even though I had been back to work and doing my job for approximately six weeks. 

At first, I was expecting to need another week or two to heal and then return to work.  But that was not to be so.  I needed physical therapy!  I began doing an hour and ½ to two hours of PT three x per week for a period of six weeks!  They rode me so hard I couldn’t get up my stairs at home to shower for hours after a session!  My husband had to drive me and wait for me because I was too fatigued to drive myself!  Upon starting my six week treatment, I was the model PT therapy patient but three weeks in I began dragging in late for my appointments.  I had daily fevers and had to skip sessions.  By the end I was too sick to even go the sixth week.  I just couldn’t do it.  I was too fatigued to even make the call to explain what was going on.  I simply never returned. (So unlike me!)

Every day I was slipping farther and farther into the abyss of illness.  Oh yea, after five grueling weeks of PT my limp was resolved, but I was now in a FULL-BLOWN, “Threat-level Midnight” flare-up of my autoimmune disease! (Stills Disease)  (My fellow “Office” fans will get the reference).  Back to the Rheumatologist I went.  Needing now another two weeks off.  Further pissing off my boss and HER boss… but still, I imagined myself getting better and returning to that job.

Unfortunately, being a home owner and having two kids at home, a dog, a disabled husband, the stress really could not have been worse.  Weeks turned into a month, which turned into two months, three…  Each time I saw my Rheumatologist he would extend my leave.  First in two-week increments.  Then in one-month increments.  Finally about six or eight months in, my Rheumatologist seeing me worse and worse each visit, helped me realize that we needed to apply for my disability pension.  To put it off any longer would only delay any money coming my way which was ultimately the reason for such a high stress level (which as you know, equals FLARE-UP!).  I would have to be out a full year from the time we applied for the disability before getting my monthly pension!  (Thank God, about 8 months from the application date, they eventually give me some of my back pay, and then eventually I got the rest of it in a big check.  Of course I was taxed at about the 50% rate on a check that size, and with the rest, I basically owed every person on earth!  By 5pm the day the check cleared I had about enough cash to go to the grocery store (sent my husband). ;)

So, how did I go from the Bowels of Hell to someone who can be a (sort of) contributing member of society?  A mother?  A friend?  And actually ENJOY LIFE?  I will tell you what worked for me. 

For the first two years I attempted to keep my kids off my scent; I did anything to keep them from knowing how sick I was.  I really didn’t want them worrying about me, but looking back, I screwed the pooch.  (Sorry Marlie!  You know mama’s only kidding girl!)  (Poor mascot!)

I would set my alarm so that I could be awake to see my high school aged son out the door in the morning.  Admittedly in the beginning, we would sit and watch the early a.m. news together and sip coffee.  As soon as the boy’s head rounded the corner toward the bus stop, my feet hit the stairs.  I was probably back in my bed before his gluteus hit the school bus seat!  By year two, I was literally just dragging my fuzzy slippers down the stairs to see that he had lunch money, his back pack and a kiss. Seriously, five minutes, but at least he saw me up and to say good morning.

When it was time for him to get off the bus, I would sit on the couch near the front window with a basket of laundry (which took me an hour to fold) so that when he came in the door he would see his mother doing something mother-ish.  I would scrape up a smile and quickly wipe my sweaty feverish brow as he was coming up the steps.  Anything to prevent him from knowing that I felt so ill that I privately contemplated asking to be admitted to the hospital on a daily basis for two years.

But the charade was doing me in.  Keeping up appearances for the sake of the kids was (ok, “felt like it was”) killing me. Perhaps what was worse than what I was putting my sick body through, was how I treated myself.

I had HORRIBLE guilt.  When I tell you how badly I guilted myself from dawn to dusk, if there were a way to get paid for that?  I’d have been a rich woman!  I guilted myself over not having coffee and news time with Kellen in the morning.  I guilted myself for not bringing in a paycheck.  I guilted myself for the fact that we well could lose the house.  I guilted myself for how hard my boss tried to save my job and yet I was STILL told to leave.  And let’s not forget how I guilted myself BEFORE I even left my job at 4pm that very last day (yes, they had me work the full 8 hours before telling me I was unsafe to work).  I made sure to give one hundred and TEN percent every day I was there to prove that I was worth them making the sacrifice of allowing me to use my OWN personal and sick leave one day per week (also known as FMLA or Family Medical Leave Act) (again, for another blog).  I was the first with my hand up for projects, mentoring, creating new forms or better ways of doing things.  I couldn’t be just Type A, I had to be Type A PLUS PLUS!!!  Trying to prove my worth!  (note to self:  future blog about external self-worth vs. internal)…

Each month it was harder than the month before.  The last year I was working, my husband began driving me to work and picking me up most days.  If he drove me, I could rest myself on the way in and somehow scrape up the energy to get through the day.   Way, way later, it struck me that I had given up driving without giving up my license.  It would be almost a year and a half of my husband carting me around to every appointment. 

By the time they sent me home that day in April, I was way worse off than I realized.  My knee was really the least of my worries.  I was truly in denial!

I needed to heal my body, but I was not going to make it easy on myself!  Noooo!  I was a bully to myself!  If I needed a nap, I felt guilty.  If I had to go to bed early, I felt guilty.  If I said I was going to the family reunion and then just didn’t feel up to it, CATASTROPHY!  Guilt-FOR-DAYS!!!  If my husband had to cook dinner, (you guessed it).  For all he did for me, I had appreciation for him, and guilt for me! 

So when I tell you the first thing I needed to do to begin to feel better, I want you to understand how difficult it really was for me!  I had to accept that I was really very very sick.  I didn’t have to like it, but I had to accept what was.  And for God’s sake!  I had to STOP guilting myself and just give in!  And by giving in, I mean that I had to GIVE MYSELF PERMISSION to accept how sick I was (no matter what anyone else thought or believed).  I had to give myself permission to STOP setting my alarm clock.  I had to accept and understand my body’s need for THIRTEEN straight hours of sleep in order to feel rested.  It is what it is.  It does not make me a bad person.  For some reason, God had me in half-time. I wasn’t in the game right now, but I would be again!  There was more for me to do, just not yet.  I had to fully understand and accept those terms.  They were not my terms!  Obviously!  But I am only a pawn here!  The more I fussed about losing my nursing career, the worse I got!  The more I struggled to finish my bachelor’s degree (yes, I did!  I had to!  I was on scholarship and if I didn’t complete my degree I would owe for the whole thing!!!) But I eventually saw the harder I tried to hold on to THAT version of my life, (that “chapter”) the worse I was getting. 

So back to sleep… (not you!  The conversation!!!)

The ONLY thing that made ANY difference in how sick I was was sleep.  If I had a cruddy night of sleep, my pain was worse, my fever was up, my rash showed up blazing across my face.  My body would just TAKE sleep if I didn’t allow for it!  I did try very hard to follow the list of the good sleep hygiene tips (no naps, cool room, bed-time routine, don’t eat late, etc…) But if the fatigue came over me like The Great Wall, I “accepted” what my body needed and let myself lay down for 30 judgment-free minutes.  (Notice I said judgment free!)

I began changing the way I spoke to myself.  I was very aware of the guilty self-talk, which was just plain abusive.  I decided to speak to myself the way I would speak to a friend.  “That’s ok Jo, if you need a nap, take one!  Nothing is so important that it can’t wait!”  “So you went to bed at 11 pm last night and slept until noon?  Who cares?  You NEEDED it, or you would have woken up on your own!  And don’t you feel better for having slept until your body woke up naturally?”

Why yes!  Yes I did!  Which brings me to the next step.  When I found even one tiny thing to be grateful for, it became easy for me to find two and then three.  For instance, “Hey!  I only slept for 12 ½ hours last night instead of 13!  That’s a half hour more of life above the sheets for me today!” or “Yay!  I was able to wash my own hair today!  I’m so glad!” or, “Today I folded a load of wash AND emptied the dish washer!  Look at me go!  I’m practically normal!”

Each day, bit by bit, I was able to start to see my body veeeeeery slowly inch by inch, requiring less sleep.  It probably only amounted to mere minutes on any given night, but if I looked backwards over the months, IT WAS PROGRESS!!!!!  And with ANY progress there is HOPE!  Without hope we are lost!

Perhaps the most honest and shortest answer would have been "I didn't cope!"  For the first two years I was disabled I wasn't "coping".  I was merely existing.  Sure I would phone a friend if I needed to vent but I saved that as a last resort.  I didn't want to burn out the few close friends I had.  I wasn't in therapy yet.  I didn't start that until around 2011.  I had no outlet for creativity, didn't give that a single thought being so sick.  I barely left the house.  I was isolated except for my immediate family (and I was "fronting for the kids") so I was living a lie those first years.  I tried very hard not to burden my husband...  I sucked at that too...  I couldn't read (too weak to hold a book, too brain fogged to retain what I read).  I didn't even realize that even my most beloved pass-time (singing!) was a relic of my old life.  So there was little to no coping those dark two years.  There was TV.  That's basically it.  Thank God I actually love TV!  So I compulsively watched hours upon hours of mindless television which distracted me from how sick I felt, how much I ached, how sad I was, how angy I was. (I suddenly feel an intense urge to push my television out into the street for the next car to hit!)

Thread by thread I began to stitch together tiny changes in the way I experienced things and in the way I treated myself.  I believe those changes saved me.

 I’m going to leave it here for now, because I know many of you can’t sit in front of your computer this long!  I apologize for being so wordy!  But you know how I love to write…

I promise to BE CONTINUED!  So check back next week for Coping continued!