Living with Ankylosing Spondylitis can be difficult but I manage one day at a time!
“My life came to a standstill. I could breathe, eat, drink and sleep, and I could not help doing these things; but there was no life, for there were no wishes the fulfillment of which I could consider reasonable. If I desired anything, I knew in advance that whether I satisfied my desire or not, nothing would come of it. Had a fairy come and offered to fulfill my desires I should not have known what to ask. If in moments of intoxication I felt something which, though not a wish, was a habit left by former wishes, in sober moments I knew this to be a delusion and that there was really nothing to wish for. I could not even wish to know the truth, for I guess of what it consisted. The truth was that life is meaningless.” Leo Tolstoy
Yep that’s what happened, my life came to a standstill! I never imagined I would dislike staying home, not having to work, sleeping in till all hours of the day; taking naps, catching up on Face Book, Google+ and Twitter, eating when I want to, going to bed when I finally can’t keep my eyes open… not everything it’s cracked up to be!
I went on full short term disability on Aug 4th and after the first week I was ready to go back to work, but my body wasn’t! Since beginning Humira the pain that was racking my body has miraculously gone away but the stiffness I’m sure is similar to what a dead person feels when rigor mortis sets in…
Here I am trying to get out of bed!
Every morning my routine starts with rolling out of bed all the while doing foot pumps so I don’t scream in pain when they hit the floor. Then leaning as far forward as I can, I push myself up and like a zombie walk to the bathroom, choke down a painkiller and zombie my way to the kitchen…… I know, not pretty at all! Last week it took me 15 minutes just to get to the kitchen; damn I need a smaller house! Once I get going I don’t feel the discomfort except when getting up from the couch or walking… oh forgot about that!
Here is me walking to the kitchen, hubby got the pick the other morning…
So since being “off” work I realized I have no life! I sit in this house day in and day out but for the special occasions I get to go to a doctor or grocery store. There are times when I get on the damn electronic contraptions and answer a few emails, but most of the time I’m playing scrabble. I figure that since my body is going out doesn’t mean my mind should, right?
Speaking of doctors, what are your thought on radiologists who don’t give a crap about what they are saying in a report? Well back in May I had my yearly x-ray. My doc told me “ah, you got some bone spurs but overall nothing really new”. This was before I decided to take a leave from work and when I finally saw the report at the chiropractors office, as he explained everything HE was seeing that wasn’t IN the radiology report, I began to get a little concerned. What if I have to apply for long term disability, will this report hurt me? Well my wonderful chiropractor, who is a saint in my eyes, came up with the fabulous idea to send all of my x-rays and density scans to a radiological specialty group. Within two days the report came back:
Although somewhat difficult for a layman to decipher the report, the clip on the far left is from the original reading; nice little blurb just saying: I have a hypomobile lumber spine; No bridging, osteophites or SI join fusion identified! No need to send this to anyone as they would think I’m just a normal soul who’s just getting older….. but wait here comes the second report and it doesn’t say anything , well maybe a few thing that the previous report didn’t mention… The comparison report was definitely more thorough, and this guy took his time and looked at everything! Roughly it states my body is in a state of scoliosis with aortic abdominal atherosclerosis and looping bowels. Wonder what that bowel thing means? I guess they are a little LOOPY?
Back to the doctors… This week I went to see a naturopath, a very nice, perky naturopath with get this, a serious background in autoimmune diseases… yep, finally, someone who knows something who isn’t just going to put me on all kinds of crap and tell me to come back in a month!
Dr. Stacy, I have to say is “mavelous daling” and very well informed to say the least. She went over my history, asked me numerous questions and two hours into the appointment said “you have been doing all the right things but, you haven’t done it right!” No sh** Sherlock, that’s why I’m here… of course I didn’t actually say that, just smiled and said “so what do we do?” She proceeded to tell me she feels that I have leaky gut syndrome, as she can see I am malnourished, and even though I tried to fix that at one time I just wasn’t taking enough of the supplements. Well that’s why I here right? Never said I was a doctor, but nice to know I was at one time on the right track!
Well we are going to bombard my body with supplements to fix my gut, adrenals and inflammation and then when that’s all fixed we will “address” the rest of my issues…. my AS; can’t fix that without fixing my gut first!
For a week now I have been doing what the good doc wants me to and though my gut feels better it hasn’t even come close to fixing my seriously stiffening body. Oh well maybe next week.
As far as work is concerned, I am off until the 6th of October, but my short term disability runs out on the 25th. Everything I buy is on credit as I don’t want to run out of money before my long term disability kicks in. I have to say I am very glad I work for the company I do, otherwise I wouldn’t have these benefits.
So back to life without a life. When you spend all of your life working, several days or weeks off is great but I don’t know how people manage when they cannot work. I had to get rid of my cleaning lady and now have a list of chores to do daily. One thing a day is all I can do and if I have to go to town nothing on my chores list gets done. I continue to have difficulties sleeping all night and spend hours playing scrabble, Sudoku and other mind challenging games but I don’t know for how long I can do this. As much as I try to keep some semblance of life the harder it gets on me mentally and physically.
Last week I spoke to the benefits coordinator on my short term disability and she said… “With your diagnosis and concomitant problems, I don’t see you going back to work for some time!”
A detemined Spondy out to raise awareness for Ankylosing Spondylitis!
Learning to deal with Ankylosing Spondylitis (AS).
Life with Ankylosing Spondylitis. Controlling through diet. London Marathon 2015!
I'm a journalist and author of 'Mostly Cloudy, With Some Bright Spells'. I live beside the seaside with some hideous illnesses (ulcerative colitis, ankylosing spondylitis, fibromyalgia, scoliosis and Crohn's disease) along with my French husband and our stupid cat. Despite being in pain 24/7 I'm a relatively cheerful, mentalistic sort.
Holistic Health & Whole Body Wellness
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The Official Blog of the International Foundation for Autoimmune Arthritis
walking to raise awareness of ankylosing spondylitis