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No, this is not okay …

I have had this on my mind for some time and feel like it is finally time to put words to paper.
Warning:
Spoonie rant ahead.
(Spoonie: Chronically ill person.)

Living with chronic pain and illness is hard. It’s a type of hard I am not sure I can even describe.

You always feel guilty for being sick.

You always hate cancelling plans.

You know the ER nurses better than the lady next door.

People, even family members, call you crazy and attention seeking, even when presented with undeniable proof of your illness over your lifetime.

Some people just can’t deal that you will never be ‘healthy’; they can’t understand that there is no cure for autoimmune diseases. So, they can’t deal with your ‘health drama’ and sometimes just leave. The nice ones at least explain they can’t deal. I get it. I have days where I want to check out too.

Plus I have an invisible illness. I look great and healthy and fine. But, I am not great. Pretty doesn’t equal healthy. A smile can hide so much.

Pain is constant. It never goes away. It is always a battle I am fighting in my head with my body, because my pain is invisible, like my illness.

Then there are the well-meaning but rather cruel things people say to me.

You just need to pray and give it to God.
Prayer can’t heal me, and God isn’t punishing me, and no, I don’t just need to pray more. Faith that God will get me to the right doctor is what we pray for. Insinuating that I am not spiritual enough and that’s why I am sick is despicable. I live from prayer to prayer. The miracles he provided are diagnoses and finding things before they could kill me. My cancer was found in stage 0-1 and my heart surgery was needed after a routine echo showed a clotted port. Those are my miracles, and I am so grateful for them.

You are always smiling, you must be feeling better.
Yes, I smile even though this is a crap sandwich. It hurts less to laugh than to cry, and I am all about less pain. Me smiling has no direct correlation to how good or bad I feel. I laugh and joke because if I didn’t I couldn’t do this. My sense of humor is my defense against this road I have to travel.

It’s just a bad day don’t complain so much and stop worrying.
I. Have. Bad. Days. Bad spiritual days. Bad mental days. Bad flare days. Bad pain days. They happen, and I have to just push through. But, my bad days can end with me in the hospital. So, if I am saying my day is bad, it’s not just me complaining, it’s me saying: This could not end well. I am worried. It’s not an everyday thing. Bad to me is a day I end up in the ER. Being in the ER had lead to hospitalizations. Those are so hard on my church family and especially my children.

Why don’t you work?
I do. I see doctors all week long. I schedule procedures, appointments, deal with insurance, take care of two kids, try to keep up with laundry and dishes. Sometimes, I am just excited I am able to get my kids to school on time. If I take a shower and make all my appointments, I am super happy. Becuase, living in pain makes everything harder, even getting showered, dressed, eating, and out the door. I also get sick, a lot. My immune system is crap. Any little cold the kids or husband have for a few days can leave me sick for weeks. And, no matter how sick I get I have to keep getting the kids to school, reschedule procedures, see more doctors, try to keep my house clean. All with my constant pain on the side like a wicked Lego you always find to step on no matter how many times you pick up the set. There are a lot of balls in the air with my health. Not all of them related. Keeping up with it all is exhausting.

You need to sleep more/better.
Sleep? Ha! If someone stabbed you could you sleep through that? Yeah, I do not get good solid hours of sleep. I flop around like a fish. That is what living in chronic pain means, you can’t get a good night sleep. Yes, meds help but the US FDA is taking those options away from people like me and NO I cant smoke weed, use the oil, or the cream. We tried. I vomited, my abdomen broke out in hives, my mouth was left in blisters. So, no, that is not an option and yes we try every option we can but in the end, I will ways need controlled medications.

You just need to not think so much about your illness. Live your life.
My. Life. Is. My. Illness. Every choice I make, from what I put in my mouth to eat, to what I wear, is dictated by my disease. As awful as it was to hear, my husband was right when he told me that we orbit around my illness. I have to do everything I can to not end up flaring my Lupus or Endo, and when I do flare it, I have to do everything I can to survive so he can still get to work and the kids still get to school. I just ate chips on a plane and am now worried it will flare my IC so I am drinking water to avoid a flare. Do you see a pattern? I always have to listen to my body and I don’t just get to do whatever I want. I walk too much one day, and pay for it the next. It’s a constant give and take and a lot of prayer.

Your children suffer.
Do they? They have always had me as a mom. I have always been sick. Do they miss out on some things? Yes. But, they are loved, fed, clothed, and cherished. No, they do not have a lot of activities outside the house. However, they are cared for, and we do as much as we can when we can. Will this affect them long term. Yeah, yes it will. Every day I ha e with them is a blessing. They probably need therapy. Who knows. But, they are loved and know it. That’s all I can do.

You use your illness as an excuse.
I might. How would I know? I know how I feel physically and that’s about it. Mentally, I just keep praying I make it one more hour or to whatever is scheduled. I definitely hide from my kids when my pain is too high. They dont go to the ER with me if I can avoid it. I let daddy do a lot on weekends so I can get extra rest. Is that using my illness? I do not believe so.

Your family should be helping you.
They do help when they can. We did live by ‘family’, it honestly didn’t make our lives that much easier. They do what they can when they can. But, my ‘family’ is my husband, and he helps every day.

So who helps you? How can you do this without a support system?
No, I can’t do this by myself. My support system is my church. The women in my church care for my children. My church has a welfare system. My church has an entire system set up to make sure we are spiritually, emotionally, and physically cared for. Some wards have been amazing, and others are harder. But, there is always some kind of support from our ward family. In my worst hours when even my husband couldn’t sit by my side it was a Sister, the Bishops wife, who never left my side and kept a doctor from removing my uterus before I had children. Without my ward family. I would be lost. My gratitude and utter faith in those sisters keeps me from giving up. I know, that my ward family has my back.

What has helped? (This is an amazing question and one I love to anwser)
A therapy dog. Sadly, he passed away.
People willing to be on the ‘get my kids from school I’m stuck in the ER’ phone tree.
Friends. New and old.
Writing my silly romance novels.
My faith that I’m on this journey for a reason.
My husband. He’s not perfect, far from it, however, he has done this song and dance for 12 years and survived two high-risk pregnancies with me.
My stubbornness and knowledge of the health care system. I have to be my own advocate.

All this being said, I have been somewhat lucky with my friends, wards, and doctors. I try to only surround myself with people who are supportive, and I have learned that it is better to scatter my venting or talking about my illness, so I don’t overwhelm my friends.

But there have been bad times with family.
Some of my family has been written off. My husband doesn’t really give second chances to people who send text messages calling me crazy and attention seeking when I am in the hospital with a blood infection. (Yeah, that happened.) When one relative was screaming at me when I was released from the hospital that I was a terrible mother and should have never had children, my husband took the phone away and told this person to never call me again.

Mostly, I just repeat this slogan to myself.

It, hurts, and it’s hard, but this too shall pass.

So, that is my midnight rant. I don’t exactly feel better, but I think that it is essential to share these thoughts. The more I look online, the more I realised that there are millions of women some vocal and some silent and I am choosing to be vocal about this journey. So if you identify with anything said above, writing this post was worth the anxiety and tears.

I chose to not be silent. Maybe, some person needed to read this. Maybe my kids will need to read this someday.

Maybe I just needed to write this down for myself.

Who knows!

Cheers,

CJean

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