Hello all, this is the first of hopefully many posts about the way of life I have being disabled. I have a condition called arthrogryposis and what it basically does is freeze the joints in my limbs to make them less mobile therefore I cannot walk and have very limited use of my hands.
In this blog I will be discussing the many challenges, joys, lessons learned, and hardships of being disabled. Everything including work, school, sociology, love, hate, family, friends, enemies, bright side, dark side, and everything in between.
I look forward to sharing my experiences with you all and hope writing things down will help me better cope with what i go through... maybe even help others as well... who knows?
I'll post more later
ReplyDeleteI applaud your courage is posting these blogs. I have been thinking about starting one myself or about starting a support group at my university for people with disabilities. I'm working through my Masters in distance ed, on improving the services offered at this distance ed university. The problem for me is, I can hide, I'm studying from home, I don't need to broadcast my disability, though I feel people need to learn to accept various disabilities simply a different way of life. I need to be able to say I'm having a lousy day without being judged. I need to be certain I can ask for help without worrying that they will see me a weak or less competent.
ReplyDeleteYour experience makes me doubt what I am trying to do, but maybe I can make a difference because I was lucky enough to a moderately normal childhood, dealing with Chronique Fatigue Syndrome, but coping. I have a husband I met 19 years ago and 2 children, so really I have little to complain about. Course we are facing financial ruin and I can no longer work outside the home...I was injured 6 years ago and have sciatica, herniated discs, chronic pain, reduced mobility and various problems due to side effects and previous health problems. I often need a cane or 2, or a wheel chair, but I can't stay in a seated position for long, so most of the time a wheelchair doesn't help. I spend a huge amount of my day in bed, carefully getting up every 45 min to walk so as not to worsen my condition. I just got a spinal injection, which should help in the long run, but the pain is pretty excruciating. Now I have to decide between morphine and the side effects; horrible swelling and migraine or a sleepless night! The other meds aren't helping.
You know having a family, a lover, etc, is not all great. I am still alone because they can't cope with my pain, I need too much help and they flee. I'm sure it's better than being alone...though I often doubt it. Yeah they come when I have a particularly bad moment, but generally my problems are more than they can deal with so I try not to talk about it and try to be a normal mom as much as possible.
This is an awfully long response. I hope you don't mind, I really needed to vent to someone who might understand and will not be overwhelmed by their concern, and respond by turning away.
Good luck with the job hunt. Your battle is one worth fighting! Could you manage to set up your own business?
take care,
Katie