Thursday, November 17, 2016
Activities of Daily Living forms
I am updating my disability file at the suggestion of my caseworker. She recommended that I make a list of all the ways that I am more disabled now than I was a year and a half ago when I first applied for disability insurance. I honestly have no idea why am posting all this because it's so revealing. But I'm getting the idea that when I tell people "I'm having a hard time"… It's just not cutting it and I need people to know that when I have to say no to your invitation, or can't return your call in a timely manner or can't meet with you face to face… this is why. I am not being dismissive,lazy or rude. I'm just trying to survive this cruel condition that can quite literally
take
your
life
away.
:::Ways that I am more disabled now than I was in May 2015:::
-Time in bed lying down has increased to 16–18 hours per day to recover from the frequent injuries and pain
-I no longer drive because it hurts my wrists, forearms and neck badly afterwards
-I no longer go shopping from a wheelchair even when someone else is pushing me due to neck pain afterwards
-Sometimes during flareups, Paul has to shampoo and wash my hair
-I only leave the house for Dr. appointments and occasional family get togethers
-Getting dressed for doctors appointments wears me out
-I feel more angry, isolated and depressed
-On bad days I do not feel well enough to make it downstairs to eat dinner with my family
–I don't do any housework or cleaning – my children and husband do it
-We built a wheelchair ramp onto the back of our house to help me get to the garage easier with less pain and so I could have more access to sunlight
-Paul has to help me remember to take my medications many times throughout the week because I can't "be on top of things" and have trouble keeping schedules
-Paul has to help me tighten SI belt & knee braces... it hurts my hands, wrists and forearms to do it by myself
-My kids fetch things I need and bring them to my bed
-Paul brings me drinks to my bed
-I can't open my own water bottles
-Paul helps me check over the kids homework... my sons school books are too heavy for me to lift (his heaviest book weighs 5 pounds)
-My kids play card games with me in bed so I don't have to get up
-I have to lie down to rest many times a day from the pain & fatigue
-Paul fills out all doctor appointment forms because I can't write without pain
-I feel shaky and overwhelmed when out in public
-Being in pain all the time causes me to think unclearly and irrationally at times
-We no longer spend the winter in Florida because the trip is too difficult and painful for me and I am isolated from doctors and therapists in Indiana
-Although I am confined to my house 95% of the time, I cannot freely go anywhere I want to inside my home – I have to conserve trips to the bathroom, to check on kids, go to dinner table etc so as to not overuse joints and cause more trauma...my joints are dislocating or partially dislocating with every movement
-I can stand for 2-5 minutes depending on my pain level before the pain becomes intolerable
-I can sit for 30 minutes until the pain in my hips and pelvis become intolerable
-I can walk very slowly for 1 minute before the pain becomes intolerable
-I can browse the Internet on a computer for 5-20 minutes depending on my pain before the pain in my neck and/or arm becomes intolerable
-I can use my iphone for up to 20 minutes before neck pain, forearm, wrist and finger pain becomes intolerable
-As I get older, my condition has gotten worse and my limitations become greater with every year- this is typical with EDS
-If I abide by all the limitations on this list, I can keep my pain level between 3-7 on the pain scale. If I go past these limitations and get to an 8 or 9 on the pain scale… It can take weeks or months for that area to get back to a 6 or 7
-My pain is never below a level 3 on the pain scale
-when a body part flares up to level 8 or 9... that body part is unusable for me because the pain and weakness is so bad. It can be unusable for many weeks before it feels better.
Examples:
(Upper body example) In the recent past, I addressed Christmas card envelopes and signed Christmas cards for about 1 hour. During the next few days the pain level in my arms, wrists and fingers reached 8–9. I could not use my hands, to lift, write, type or do other fine motor skills for 3 weeks. Now I make sure to only write for 2-3 minutes at a time and I only use a fluid ink pen that is easier to write with and causes less strain.
(Lower body example) 2 years ago, I did very light housework-dishes, putting away laundry, & sweeping with a broom one evening. I was on my feet for about 1.5 hours. After the pain kicked in a day later… my pain level was an 8-9 for about 2 months. I could only get up to walk to the bathroom and dinner table a couple times a day during those 2 months due to the extreme pain. Now I make sure to stand on my feet for only 2-5 minutes at a time.
(Neck area) About a year ago, I composed a blog entry on my own disability diary blog via talk-to-text on my phone over the course of 4–5 days. The excessive looking down at my phone to edit the text caused severe neck pain for 2 months that caused me to be lying down while it healed for most of that time. The neck pain also included nausea and dizziness. I could not stand up or bend over without severe dizziness. As a result I stopped doing my blog and I am careful not to look down at my phone more than a few minutes at a time.
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