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.

Listen to Your Disabled Mother

I'm Kristen and I have two kids. Eli is 11 and Winnie is 5. I have a genetic condition called Ehlers-Danlos Syndrome which is a very painful and complicated connective tissue disorder.
     People with Ehlers-Danlos Syndrome have a defect in their collagen producing gene. Collagen is like the glue that holds your body together and makes up things like tendons, ligaments, skin and blood vessels. So basically my "glue" is defective, very weak and does not hold me together well. EDS causes a whole slew of painful problems throughout the entire body but one of the most notable is frequent joint dislocations. These can happen in any joint and for me they happen every day. So when I walk my hips are partially dislocating, coming apart with each step so needless to say it is quite painful and frustrating.
    With that said, when thinking about what I wanted to say for this event… I struggled with narrowing down a topic of conversation. I could literally talk for hours just about the pain symptoms alone. Or I wondered if I should I focus on the isolation of disability and being bound to a wheelchair. Or maybe the guilt of not being able to play with my kids or take care of them the way I once did.
     But today I'd rather not dwell too much on the bad… I realized that if I was given 5 minutes to speak to a large audience about motherhood and disability, I didn't want sympathy tears... I would rather be able to encourage someone. So here are a couple of insights I have learned along the way as my health has declined.
    The first is a message that probably hits home with overachievers, perfectionists and probably most moms to some degree…
     Sometimes less is more.
     The modern-day idea of the 'Supermom' is such a facade as some of us have found out the hard way. I used to push and over schedule my kids and never sit down because… What a waste of time! But a funny thing happened to me...most of my physical abilities were gone by the time I was 35 and yet the world still turns and goes on without me.
     I remember being in the kitchen recently with my 11 year old. My heart was so heavy with guilt because it was beautiful outside and I couldn't take them to the park or even go for a short walk with them. I said to my son with sad eyes, "Eli I am so sorry that I can't take you guys out to do fun outdoor activities like we used to." And he kind of looked at me confused and said, "Why?" And I said, "... Well, you know I just can't get out and about like before..." And he just shrugged his shoulders and said "Oh, ok" got up from the table and skipped away unharmed. And for the first time I realized, it never occurred to him that he was missing out or that I had failed him miserably.  Doing less was not a problem for him. Yes, I do wish we could get out more…  but we've replaced adventures & outings with family movie nights curled up on the couch, listening to records, and playing board games from my bed when I'm not feeling well and that's OK too; maybe even a better to have a slower pace in life. Our family time is much sweeter as this "tragedy" unfolds and I'm learning it is quite possibly a blessing in disguise. I have had to slow way down, let go of the guilt and realize that I am exactly the kind of mom that I'm supposed to be, because there's just nothing I can change. And I would just like to encourage every other mother out there...especially young or insecure mothers.... You are exactly the kind of mother you are supposed to be, too.
     The second insight is a challenge to reach out to someone in your life that is shut-in. Whether it is a family member with a chronic illness, an elderly neighbor, or a friend struggling with an invisible illness or mental disorder. I am SO fortunate to have a fantastic doctor and an amazing support system. I have a husband who's THE best Mr. Mom/slash caretaker EVER and my family is nothing but supportive. But that is the exception and not the norm for many other sick and disabled folks. I've had the opportunity to meet some amazing individuals through support groups with disabilities of all kinds. Sometimes the symptoms are different than mine, but the struggles are the same… Being chronically ill is a HUGE burden. We, especially, need others to help us get through this life, and although I have been hugely provided for… unfortunately many others are often forgotten about or left behind.
     My husband often mentions the teaching of Jesus in Luke 14. Jesus states "When you go to luncheon or dinner, do not invite your friends, your brothers or relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous." I know from personal experience that even something as simple as sending a card, stopping by for a short visit or sending a quick email that says "how are you doing today?" means so much to someone who is chronically ill.
     And the final insight is .... Feed your spirit. I'm convinced that our souls are the only things that will last forever and the legacy that we leave will depend on how we treated others. The book of Galatians says that the fruits of the spirit are love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. And with a glad heart the last time I read this, I realized that none of these qualities require physical strength, vigor or coordination while walking.
     As a friend of mine pointed out to me recently as she was pushing my wheelchair… "We're all heading where you are Kristen... You just got there a little faster". For me especially, it's easy to see that our physical bodies just aren't meant to last forever, so be sure not to ignore your spirit.  Nourish it, seek wisdom, pray for peace. Slow down, be kind, love others deeply and know that you are a great mother.

So much pain, so much beauty

I'm often surprised when people ask me if my condition causes pain. Most days it feels like someone beat me up in my sleep… But because the condition is invisible… no one can see the damage. This image does a good job portraying what my body feels like 80% of the time... Except that the lower extremities are affected just as much. This image also does not represent the horrible G.I. symptoms, nerve pain, migraines or unbelievable weakness.

I don't take any pain medications for my condition because they're problematic and cause other problems for me. So what do I do about all this pain?  It's hard. My nice family lets me rest as much as I need so I have a lot of down time to recover, think, stare at the ceiling and recently I've been listening to lots of music.

Sometimes I feel sorry for able-bodied humans busy with the hustle and bustle of life, because with my slower, cooped up pace...I listen to lots of music... Sometimes for hours trying to soak up every good bit. So far, it helps me more than pain medication. It's healing for the body AND soul. This might sound crazy, but I think music sounds even better when you're sick or hurting. Imagine when you are feverish with flu and you have that crazy, slightly irrational mentality??? When you have chronic pain… You are always flooded with that same heaviness, dread and doom in the body. You are desperate to cling on to something beautiful and good. So for me beautiful music resets my well-being and helps me in a way that pain meds can't. Ultimately it's God touching down in my life which I am so thankful for. Even when the lyrics don't explicitly worship him... They don't need to for me to know that he is there & hasn't left me sick and alone.

Here's what's on my playlist recently: Nick Cave, New Romantics from the 80s, British invasion bands, Larry Norman, The Beatles, Tmbg, the cure, bob Dylan, Johnny cash, wings, Steve & Charlotte from Calvary, rem, Mozart, the beach boys, early century folk & field recordings, spirituals, & I recently had an unexpected worshipful experience recently with 'devil went down to Georgia'.

So what music transforms you?  I would love to stumble on to something wonderful post 1990s ;)