Living With A Chronic Illness- My Current Struggle

For you regular readers, you know this post is supposed to be about easy, low-cost handmade gifts.

I promise that post is coming (tomorrow) I hope. I know that many of you with a chronic illness or physical challenges understand that what you want to do and what you can accomplish are two entirely different things.

For those of you who do not struggle just to accomplish a task as simple as combing your hair, I pray you never have to.

Since writing is what I seem to do all the time now, I have decided the best way to deal with my current battle is to get it out there, and posting it on my Facebook page just stirs a whole pot I don’t want to mess with.

This post is a vent.

If you want “perfume and roses” I suggest you skip this post.

I apologize in advance for the rabbit trails and rants, but I needed to get it out and analyze it.

So here it is

My current life.

I am blessed with 3 teenagers, a fantastic husband and this silly thing called Ehlers Danlos Syndrome (my girls have it too).

What does this mean?

This means that I have the struggle with teenage attitude every “regular” parent has.

The “I want to drive, I want to be my own boss, I want an x-box, I don’t want to help with the dishes. Why can’t I do X, Y, Z?”

But instead of just the “regular” teenage problems I have two girls who struggle with just waking up, getting dressed, combing their hair, getting breakfast (and keeping it down), attending and functioning in school and coming home to try and finish school work without spiking a fever or dislocating a wrist, elbow, hip, ankle, etc…

I’m serious about ALL of the above.

Every, single day is a huge struggle with pain.

Forget whether or not I will be cheering for them at a ballgame.

Instead,we have to decide if the temperature and their joints are right for them to even watch from the side lines.

It means for any activity we choose to do, I have to consider a huge list of things:

How long will we be in the car?

What braces & mobility aids will we possibly need?

How much recovery time will they need after the activity in order to function properly?

(Even after a trip to Grandma’s.)

What foods and drinks will be available? and What do I need to bring to supplement?

What injuries could they sustain? and Which medications should I bring?

Will they be able to even enjoy the trip?

If we are invited as a family, will the others on the trip understand our limitations?

(I am sad to say that No, they usually don’t, and therefore we do not attend larger group outings.)

If a normal child’s “feet hurt” they can push past it with no long-term damage. If my child’s feet hurt we have to check for sublaxations, bone spreading, unknown bruising, swelling, and fractures. All from simply walking a few minutes.

Most days these things are just a part and parcel of my life, and while irritating, I can tolerate them.

This week however is another story entirely.

This week I just want to crawl off into a corner and disappear, forever.

This week I can’t seem to accomplish anything…like a simple blog post.

This week (and last) I feel like the worst wife, mother, daughter, etc.. alive.

This week I just want it all to be over. NOW

(Before any of you start an intervention- just take a breath, I know I am needed and will continue to screw up my kids lives as much as possible.)

This week I have contemplated why I bother with fighting this disease and this life.

Why is this week so much worse?

Let me tell you a little bit about me. Not the EDS me, but the me inside this EDS body.

I love to create. I love a clean house. I love to cook for a crowd. I love to entertain. I love to help and encourage others. I love my husband and kids. I love being a parent.

I am an overachiever. I will have 20 projects going at once. I am a procrastinator and actually thrive under some pressure. I am a stay at home mom who wants to do it all.

This ^^^^^^ is the real me, stuck inside this stupid body.

If I could, I would drive home each week and do things with my mom, sis and Grandma. I would do projects and hang out with my kids for hours each night. I would go on dates with my husband- even if it is just dinner and a movie. I would always have the house clean, laundry done and fresh baked goodies on the table. I would always have my house decorated (the way I like). I would always have my blog posts ready and on time.

Instead, THIS Week

I can barely turn my head from side to side. Typing this post makes me want to cry. My counter is full of stuff. Laundry hasn’t been touch. My living room looks like a cyclone hit it. I managed a bath but could not in any way, shape, or form attempt to wash my hair. My daughter threw a pre-processed supper of popcorn chicken and fries in the oven. I feel as if my head will implode and my back is going to tear in two at any minute.

What did I do to cause this you ask?

I woke up.

Yep, I was reading on my tablet in bed Sunday morning (laying on my side) when unbelievable gut wrenching pain attacked my shoulders, arm, back and leg. Most times I am in motion or sitting when the invisible monster attacks, but this time I was laying in bed.

Yep, having EDS means I can go to bed with zero to minimal pain and wake up unable to move at all.

I am used to pain, but it is supposed to be pain I can push through or “adapt” around. Not tie me to the bed with debilitating pain.

This Sunday I couldn’t even dress myself (I often struggle but can manage some), or walk to the bathroom without crying out in pain. I finally took a muscle relaxer (child size dose due to zero chemical tolerance) and was able to move around my home for an hour or so just trying to interact with everyone. Then came the side effects to the medication: tears, depression, crabbiness and sleep, the pain didn’t leave, but I was able to sleep.

Yes, I woke up able to move without the gut wrenching pain, but I couldn’t process a single complete sentence and still hurt at a 9 on a 1-10 scale.

What kind of life is that?

Today was no better. I didn’t take anymore medication since we had another Dr. appointment today, and I needed to stay as alert as possible. (Thankfully the hubby was home to drive.) I did try the chiropractor but my lower back is so twisted he was unable to help much with one visit. Instead, I have spent the day gritting my teeth and trying to take (literally) one step at a time. I have been unable to exit the car without squeaking in pain, turn my head to look at anyone or anything, bend over or reach for anything. All because I went to sleep Saturday night.

Getting up is often one of the biggest challenges of my day, not because I am tired, but because I can’t turn my body over without mind blowing, excruciating pain, whether it is in my neck, lower back, shoulders or my favorite my head (migraines).

Most days I can stretch, roll, move slowly and push past the pain enough to keep moving and slowly make my way through my day, but to be honest there is not a day that at least one section of me is not in pain, but as I said I am an overachiever and push past it.

20 Years ago I worked 3 jobs: waitressing and as a secretary and attended college full-time out of town. Now I am excited if I finish my daily household maintenance list and manage to have dinner mostly ready.

I am only 41 years old.

I shouldn’t need a walker just to try and get dinner started or get out of a chair, but sometimes I do.

I despise this disease, but I am not going to let it get the best of me.

I started this post today just as a way to vent. This is not what this blog is about, but some of you have messaged me about how I remain so upbeat and positive about everything and how I must not have a severe case of EDS. Honestly, no I don’t. There are people a whole lot worse than me, but even on my worst days I try to remember. I can do all things through Christ who strengthens me. Sometimes I even have to repeat this when doing things as simple as tying my shoes, combing my hair or rising from a chair.

This blog is about spoonsavers (adaptations), tools, shortcuts and encouragement because I want to help everyone keep a positive outlook and be the best they can be, but I don’t want everyone to feel that they are alone in their struggle and that others live in a world where everything is “peaches and cream”.

Many of you know I have 2 blogs. This one and another with crafty, cleaning, organizing and household ideas. On the other blog I try to pretend I have a normal “body” and normal “life”- only occasionally mentioning my pain or illness. Here I can just put it all out there. The true reasons why I have learned to adapt a certain action or behavior, and it is so freeing.

I am not trying to hide my illness from the world, but lets face it, most of the world has no clue what we face each and every day and would not bother to continue reading if I laid everything out there, so I continue to post there as though I live in a bubble and lay it all out here.

Thank you for listening, and I promise I will return to encouraging, uplifting posts tomorrow.

If I feel this post was too depressing or not reaching people it may be removed in a few days, as I don’t want to leave up a post others did not enjoy reading or get something from, but for now I needed to vent.

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Tags: EDS, EDS Truths, Life with EDS, Life with EDS Children

My Family's Personal Stories | TinaMiller | November 11, 2014 12:50 am

4 Comments

By Angelle, November 11, 2014 @ 4:59 am

Love this! This is EXACTLY how I feel every day!
By Dessica, November 11, 2014 @ 9:31 am

Yes. This is how I’ve been feeling lately. I had a “why me” breakdown with my husband last night. I’m not nearly as bad off as many zebras out there, but I know that fact doesn’t make my struggles any less valid. I’m struggling with feeling like a burden…like dead weight because I’m not currently able to work outside the home. I just want to be normal and not hurt.
By TinaMiller, November 11, 2014 @ 9:55 pm

Dessica, I understand completely. Thankfully we have finally reached a point in my husband’s career that I am able to be home without feeling guilty. I was forced to stay home due to my children’s health long before it was financially comfortable and have always tried to save money during that time. Couponing, ad matching, watching for sales, crafting part-time and doing many of the things I shared in my “17 Income Supplementing Ideas” post.
Being a zebra is hard enough being stuck at home is even harder. Perhaps you can find a small niche or way to contribute while you are at home and it will help keep your spirits up.