Friday, June 5, 2015

SO Frustrated.

WARNING- This will be rant-ish

Read at your own risk.
      I think I do pretty well with staying positive and finding the good in everything, including my illnesses.  Oh- I have my days but overall I handle the pain, the stiffness and even the exhaustion without letting it bring me down.  That said, I find myself increasingly frustrated with this latest flare.

     I wrote about the onset of the flare a few posts ago.  It was a particularly nasty one.  I think that I have been stable for so long that it took me by surprise.  I know that for each of us who live with these illnesses our "normal", our "stable", is personal.  No two cases of RA/Fibro/DDD are the same.  Our commonality is pain, stiffness and diagnosis- the rest is different.  For me, my stable is pain and stiffness in the morning, waves of exhaustion around 2pm and difficulty sleeping at night.  The pain starts at around a 5-6 in the morning and levels off to a 3-4 for the rest of the day.  The stiffness subsides enough to function within 2 hours but throughout the rest of the day if I sit too long, stand on my feet to long etc, I get up and move around stiff as a board for a few minutes.  I have also begun having my lower joints (feet, ankles, knees) swell enough and stay that way enough that Lasix is part of my daily regimine.  The length, strength and duration of the pain and stiffness ebbs and flows but it's pretty predictible and usually tops off at a 7 (especially my back)- hence, stable.

     Knowing what to expect and being able to handle it is how I can remain positive.  One of the first changes to my life when I received my first diagnosis was the appreciation for routine.  Pre-RA I thrived on never knowing what would come next each day, post-RA I thrive on routine.  Pre-RA I planned my schedule months in advance to control the chaos but I lived for the long hours, the unpredicability of my work and home life, the drama of being surrounded by a diverse cross-section of people.  Post-RA I can't plan my life so much because I don't know from one day to the next what I will be up for, my circle is much, much smaller and having a routine helps me cope with the darker side of being chronically ill.

    Part of my current frustration comes from the way this particular flare is hit or miss now that I am nearing (hopefully) the end of it.  Most of it has subsided and has eased back to normal, but it keeps popping up here and there, letting me know it's still everywhere.  Just when I think the majority of it is gone, it sneaks in and surprises me.  Wednesday night I worked an event.  I knew the flare was coming back because as I lay in bed I could feel the skin stretch as my feet swelled.  It's such an odd an unsettling feeling.  I can't describe what if feels like to lay there and have you knees and ankles throb and your feet burn while the skin widens as it accomodates the swelling.  Thursday morning my feet, ankles and knees were so swollen and sore that I couldn't even fit them properly inside my husband's crocs to take the dogs outside.  When Harley got herself stuck by wrapping her leash around the table that is outside I had to take it VERY slowly to get out and "rescue" her because the soles of my feet were so tender that it was painful to walk across the patio.  It felt like I was walking across a firepit laced with glass.  I got her unstuck and got the three of us inside then sat with my feet up as I drank my coffee and waited for my morning meds to kick in.  By the time I had to get ready and leave for work, I probably should have used my cane but I couldn't- and that brings me to the biggest part of my frustration.

     My hands and wrists have not subsided much at all.  The stiffness lasts half the day, goes a way for a bit and then comes back.  The pain has leveled off to an 8 (it was unimaginable at the onset- I would have rated it at a >10) but my hands are my life line.  I am a writer.  I am no chef but I love to cook.  At work I deal with a crap-ton of paperwork and data entry.  Since the flare began when I do type, my fingers don't "listen"  and go where they are suppsed to.  Everything takes longer than usual because I have SO many typos and have to keep fixing them.   I NEED MY HANDS.  Yet here we are.  This blog has taken me almost 2 hours to write as I stop and massage the hands and wrist, get up and do something else and then come back to it.  My fingers are so swollen in the morning that I haven't been able to wear my rings consistently for weeks.

That picture is from just a few minutes ago.  See the reddish/brown on my ring finger?  That's from where my wedding rings were so tight on my enlarged fingers when I woke up two days ago that I had to take and leave them off.  My rings, that I wear constantly on both hands and never even took off when my husband and I were separated used to be loose enough that if I flung my hands out- they would come off. Now, they are snug all of the time and both hands currently look like this.  My knuckles are bruised, my wrist is bruised and everything is still swollen at 3pm.  Ironically- that's not even the hand I aggravated when I fell in the shower a few days ago.  The left looks the same as this one except I have indents from the rings I wear there rather than bruising.  I am using a brace to rest the wrists until I find something that I can't do with it on- like type this up- then put it back on for a while on whichever wrist and hand is thobbing more.  I can handle the pain and stiffness, I know I can.  I am tougher than this. I just find that the fact that the rest of me is subsiding but the hands and wrist are hanging on so long is beyond frustrating, it's almost infuriating.  I want this to stop.  I want my pain level to lessen, I want the stiffness to go away, I want to be able to use my hands like my usual normal.  It's also frustrating to think that this may be what I have to look forward to as the diseases progress.  Is this a peek into my future?  If so, it may take me a long while to adjust.  It may be harder than I I expected.  And I don't like that thought.    

1 comment:

Diane said...

Hi Julie .... So happy to have been referred to your blog ..... By a lifelong friend ....
I was diagnosed over a year ago ..... But was in denial for several months a year before that I was severely injured by a first time visit to a all 4 limbs ... Both shoulders ... Both hips ....(A very long story.. But walked in healthy and extremely agile .... 45 mins later I was a cripple in severe pain) .. The story gets better ...I started a diary from day 1 because I was so startled)
.... Anyway long story short ... It took me approx 14 to recover from those injuries ....immediately could not work .... But I did recover ... It was a long and painful struggle .... And it was the first time in my life I had such dark dark thoughts at night in bed :(
.... But here I am ....I have my full range of motion back .... And I. Thank god every night that I can finally move every which way again...but for the onset of this insidious disease that set in about half way through my recovery from my chiro injuries ...
... So it would be understandable I think ..... To believe that this new and far different kind of pain... Was something else not related to my injuries...
..... I am rambling .... Sorry .... But until tonite I have not confided with anyone with this horrible disease ...
What I prompted me to reply to this particular blog was your hands :( Mine have been so sore for about a month now ..... A few good days in between ....but the last week has been non stop... I babysit my 2 beautiful grandchildren 2 days a week ... She is 4 ... He is 15 mos ... Just walking .....they live in a 4 level townhouse.... OMG ... Benjamin the baby ... Isn't light anymore ...j
It's breaking my heart I can't do this anymore ..... Every minute with them is like gold to me ...they are precious ...
... Well you know the story .... I'm looking forward to reading more .....before my battery is gone for the night ....
I look forward to keeping in touch if you like :)
G nite now