"Oh, let me tell you about YOUR disability..."

Its been a while since I've blogged, but it's something I'm desperate to get back to.  This post has been a while in the making.

I had to bite the bullet a few months ago and my husband and I had myself declared "handicapped - permanently" through the state so I could receive a placard for the car while he was deployed.  It was a very sad day for me.  It's a struggle, constantly, between letting people know about Ehlers-Danlos Syndrome and how it affects me - and not letting it rule or ruin my life.

May was EDS awareness month.  I find this to be especially important as I would not have been diagnosed if it wasn't for a passing conversation with a complete stranger.  It's so important to me that more people learn about EDS.  With this comes...more opinions, though, on how *I* should be living *my* life with this syndrome.

Whenever you are disabled, no matter the cause or severity, everyone seems to have an opinion on it.  "Oh, you're TOO disabled to be doing that!", "You don't LOOK disabled", "IF you were disabled you surely couldn't do THAT!", "Are you sure you are disabled?", "Are you sure you should be doing that?", "I think you are faking", "You don't need to be taking THOSE medications", "You can't be in that much pain, surely, and still be moving!", "I think you are a drug seeker", "*I* would never take those meds, even if I was in pain", ect ect ect.

Everything I do is now questioned, scrutinized, judged, and ridiculed.  I've dealt with it from people who don't know me well, Chris's squadron mates, and most recently people I confided in and considered good friends of mine.  It's tough, but it shows me who I can count on to be there for me and who I can't.  It also shows me how much further we have to go in educating the general public on Chronic Pain conditions and EDS.

Yes, my joints dislocate, my tendons and my ligaments tear, my muscles shred, and when the damage is severe enough my bones begin to degrade.  Yes, I get up every day and do what any hard working mom of 5 would do.  Would it be easier to lay in bed and cry? Of course, and there are days where mentally I AM still in bed, curled in a ball, and crying my heart out.  Crying because of the pain, and crying because it's just not fair that I have this.  But physically, I get up and take care of business.  When it becomes more tough to push past the pain I meet with doctors and have procedures done to help.  Thats why I had my wrists fused.  I couldn't push past the pain any longer, and by that time my wrists were permanently dislocated, shredded, and separating from my arm.  I think I did a damn good job still parenting with broken wrists.

I feel that disabled people have to go ABOVE and BEYOND what any able bodied person does, and still we aren't good enough.  In my case, it's with my parenting and my ability to care for my family.

If I was an able bodied mom of 5, whose husband is deployed, I could make a frozen pizza for dinner, take a nap in the middle of the afternoon, or feel so tired by the end of the day that bed time comes early and everyone would completely understand.

When you are a disabled mom you must ALWAYS cook meals from scratch, maintain a meticulous house, play non stop with your children, have endless amounts of patience, and never ever be tired or complain.  If you fail, or have a bad day, you will be accused of being too disabled to physically care for your children.

If you decide to have a large family when you have a disability, well you are just in for it!  Even if you parent in such a style that you are constantly attached to, engaged with, or responding to one of your kids.  You mine as well be lumped in with abusers and neglectful parents!

I REFUSE to let EDS take away my dreams.  I was born with it.  A lot of people are born with it.  Experts believe about 1 in 800 people have some form and 95% of people will never be accurately diagnosed.  To me it's like yelling at a woman with RA for having kids, RA can be passed down too.  No family is perfectly healthy. Of course I hope my kids don't have EDS, but given the alternative (them not being born) I don't think they'd rather that have happened. Plus, having a parent who is AWARE sets them up for such a much better future dealing with it than I had.

Even my medication and how I handle my disability is scrutinized, judged, debated....

My journey into pain medication began almost 4 years ago when the pain became unbearable.  After the birth of David within 6 weeks I went from okay with minor aches and pains here and there, to unable to walk or use my arms from severe pain.  My elbow began dislocating, and eventually after a few weeks of dislocating over 100 times per day I could no longer pop it back into place.  It's still dislocated 4 years later.   The geneticist said it's one of the worst hes seen.  There is no option for it but a replacement which I can't get until i'm 35.  My legs stopped working and after PT and OT 3 times a week for 8 months I regained them but popped my achilles tendon in the process.  My wrists were severely damaged from dislocations, and required the fusions to fix.  During this process I was prescribed percocet, but no one was managing my pain meds.  I began taking more and more just to get the same pain relief.  Once I was taking 25mg at one time I knew something had to change.  My doctor suggested a pain clinic and I've been there ever since.  I've only raised my pain meds twice in the past 3 years which is pretty rare and slow going.  I'm very careful to not take too many because of tolerance issues.

I'm currently on dilaudid and morphine.  This has caused quite the stir.  Quite the opinions.  Until someone can experience the pain I'm in they can't say what they really would or would not do.  Compared to a lot of EDSers I'm on NOTHING.  One lady is 3 years older than me and having a pain pump surgically placed inside of her.  Others are on fentanyl pops, morphine patches, oxy, and dilaudid at the same time.  I would never judge any of those people.  Pain is so mentally and physically exhausting.  We do what we have to do to function.  I refuse some of the harsher pain managments, like methadone, because of nursing and wanting more kids.  I'm very carefully monitored by a huge team of doctors.

At the end of the day, it's MY life, MY choice, MY disability.  I don't mind sharing about it, but keep your opinions on how I should be living or managing it to yourself.

Spoons

I was planning to post this last night, but Blogger was down so it's worth posting tonight.

This is an article that my friend showed me a few years ago after I was diagnosed with Ehlers-Danlos Syndrome. "The Spoon Theory" has resonated deeply with me ever since. I don't blame people for not understanding what it's like to be me. How can someone who is healthy, and normal, and has loads of energy, who doesn't wake up to dislocated limbs, or complete loss of joints understand what someone who DOES have all those things feels like? It took my own husband reading my MRI scans to actually grasp that I wasn't "putting on" or exaggerating how bad it was. It took some of my doctors over a year to take me seriously about the pain. So I don't get offended that someone doesn't understand. I have no idea what it's like to live with Cancer or a terminal illness, they have no idea what its like to live with EDS. Even though the spoon theory was written for Lupus it still applies for EDS and most other chronic conditions.

I have a finite amount of spoons. Some days I have more, some days I have less. Some days I barely have any at all, and other days I have nearly as much as a normal person. Some times I borrow spoons and then I'm short the rest of the week as I recover, sometimes my pain meds gives me a few spoons and sometimes it takes away a few.

Yesterday was one of my lowest spoon days. The whole house has been sick with a cold/tummy bug. It has completely wiped me out. Especially because Charlie has been hit hard and only wants me and my nursies all day, and all night. And I mean all night. Sleeping in 10 min. increments when you are sick yourself is a recipe for disaster. I am not a TV watcher. I watch maybe one show a day, unless Chris and I watch a bit at night while we unwind, but yesterday I couldn't find the strength to even get up off the couch. Having OCD on top of this drains my spoons even faster. My OCD causes my anxiety and stress to go way up when my house is cluttered, dirty, or chaotic. So I sat on the couch and thought of the laundry piling up, the carpets that needed to be vacuumed, the kids that should be interacted with, and it drained me further and further.

As soon as Chris got home I had to leave. I couldn't stand to be in the house for another second. I had no energy, and I actually sat in the car and cried for a few minutes because I wasn't sure I could even leave! I figured I'd go to Target, and then to dinner, and hopefully relax and recoup. I love Target. I was in Target for less than 10 minutes because I could hardly walk. I knew it was time to leave when a sales associate came over and took my basket from me saying it looked as if I was going to keel over. Times like that are quite embarrassing for me. How do you explain to stranger that you have an "invisible illness" and it's not that you are weak, or whatever may be running through your head? Sometimes I feel I need a sign, "Yes, I'm young. Yes, I LOOK fine. Looks can be deceiving. I am sick."

I went to my favorite Mongolian BBQ restaurant after that and for the next few hours I had great girl time with my Best Friend, Sandra. I didn't have to walk, I didn't have to put on, I didn't have to make excuses. It was absolutely exactly what I needed. The best part was returning home to see my husband had done all the things around the house that I couldn't!

Today I'm still wiped out, but I have more spoons than I did yesterday. I'm hoping that as the days go on this week I'll have more spoons, and on the days where I don't I know I've got an amazing support system to help me out.