Living with Ankylosing Spondylitis can be difficult but I manage one day at a time!
I know it has been a while since writing my last post and not because I didn’t have anything to say, I always have something to say, I just wasn’t motivated to sit and take the time to tell you all of my troubles.
I haven’t worked since the end of July, going on full disability until my FMLA ran out which was about 8 weeks. I had got to the point where I couldn’t get out of bed and really didn’t want to. I thought it would be better to let life pass me by and eventually, I presumed I would wake up and get on with my existence. But of course Life doesn’t work that way.
My “medical challenge” as I am now calling my dis-ease won’t just let me lie around, so I just moped. I tried to clean something every day, since I cannot afford the housecleaning I previously enjoyed, but that just wore me out. My garden was producing tomatoes and I decided one day to teach myself how to can. I had all of my stools set up around the kitchen and moved from one station to the next. It took me all day to produce 3 jars of spaghetti sauce and 2 days of recuperation.
It’s not that I don’t WANT to do anything, ok it is, and I really just want to sleep. But when I’m not sleeping I can see how my house looks; I need to go to the store; the fish tank really needs cleaning…. I just don’t want to do it because then wretchedness sets in for at least 2 days.
I know I am depressed, at least I know I was but who wouldn’t be after years of working, going to school, taking care of family and then not wanting to get up because of pain and losing your day to day routine because of pain and losing your LIFE because of pain! I want my life back and one way or another I will GET it back!
I have been going to see a naturopathic doctor and she did diagnose my “leaky gut” syndrome and put me on some intestinal formula which for the most part is working out great. At least one part of my “medically challenged” body is beginning to behave. I started physical therapy in the pool and am going on week 2 and I can really see the change. This has forced me out my self imposed prison 3 times a week and it appears to be working!
I started thinking how do people survive on disability? I have only been off of work for 8 weeks and I cannot handle it. I’m doing a really poor job of letting my body rest. I should be able to just lie around, read books, blog, check FB and Tweet how good things can be when you don’t have to get up and work every day. I always thought I could handle being a stay at home wife, getting the meals done in time, house cleaned, and having time for my own projects. But NOOOOO I cannot do any of that and it’s not because of the pain.
I am going on 5 months with Humira and it has worked wonders on my pain but it has done nothing for the stiffness and the aches in my legs and feet. I’m still taking pain medication to alleviate the soreness in my feet just so I can walk, and buying a pair of shoe inserts have helped but it still hurts to walk after I have been sitting for a while. The same goes for my hips but I think the pool therapy is starting to work as it doesn’t bother me as much now.
The only other issue I’m dealing with is sleep. I can’t sleep for more than a couple of hours and no sleep aid on the market has helped. So during the day I walk around like a zombie, fall asleep while watching TV until my neck hurts which then wakes me up because of the way I am positioned on the couch and then get up, stumble around until the soreness leaves and do it all again.
Living a life with a “medical challenge” is difficult and I know I don’t want to live this way anymore. I am fortunate to still have a job which I will be going back to this next week. I am going to try 2 days a week since they have moved me to outpatient which will be less demanding than my previous position. Will this help? I sure hope so.
I’m hoping with time I can increase my hours and get some semblance of life back. My goal is to ski this winter so I have to keep up with the physical therapy and try to keep my mental stability in check. My heartfelt thoughts go out to those who do not have the opportunities I have as far as employment, because I know that not working has put me in this dilemma. My life IS my job and without it I would go totally bonkers.
Thought I’d share some pics…..
my b-day present from my son
My son and I on a trip to Silverton by train
my jar of spaghetti view from the train
Hope everyone has a fabulous Day!
A detemined Spondy out to raise awareness for Ankylosing Spondylitis!
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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
Bridging the gap between life and life everlasting
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The Official Blog of the International Foundation for Autoimmune Arthritis
walking to raise awareness of ankylosing spondylitis