Invisible Diseases

Yesterday, I reached the lowest I could reach. But then I was lifted up.🥹

Someone said something that made it patently clear that they have no cooking clue how bad this is. How the fatigue weighs me down daily. How it’s scary to feel my lungs suffering when I try exercise. How frustrating it is that things I could do easily just months ago, are impossible now. They have no clue, despite the amount of awareness posts I’ve done, how all-consuming and painful, oh, so painful this disease is.

If I DO sleep, I have nightmares that people are drilling into my SI joints with the swords. Or I dream that I’m at the hospital begging for morphine. (That’s just this week’s worth of dreams that I can recall)

I realised you can never raise awareness of everything and make it make sense to everyone. The whole point of ‘awareness’ for me as a Christian AS patient with other organ problems) is that people understand the reality, to know that for some people, that one step forward took much effort, so don’t except them to hike up a mountain. Awareness -for me-is so we are all kinder and more thoughtful of what we say to each other because we have no clue how many smiles are painted on but not genuinely FELT. It’s to show that I am “content with whatsoever” God allows, but I’m not well. For people to know that the happy grin is hiding a grimace of pain. I’m just trying to live the gospel, to be a living example of faith-resting in His promises instead of my present reality.

But if all efforts at awareness fail, it’s time to stop and just blog. Thats the problem with an invisible disease. It’s not as dramatic as something visible and so they act like your reality is nothing horrendous.

BUT, know my awareness hasn’t totally fallen on deaf ears. I have a young newlywed who even years ago when all she knew about were the sleepless nights due to pain and IBS, the iron infusions told me that it helped her appreciate her life of painlessness. She said she’d never been sick so couldn’t comprehend but it made her more gentle and kind to others. And more aware of suffering. Her words and the words of a mom of many keep me going when it seems those closest to me inflict the worst pain by their ignorant comments. And there’s no point in flogging a dead horse. At least now when I’m not at church, members who have my number and see my posts understand the multiple reasons why I’m not there. (Children and me) And when I AM, they can understand why I leave early. I guess my awareness job is done via that platform.

I watched a video this morning and what the AS patient said reminded me of her statements and brought tears of “YES! You get it! And I get YOU!” rolling down my cheeks. And this is someone on helpful treatment, but he still has bad days. It validates me who after more than a decade of actively seeking an answer, had a diagnosis in January and is still untreated. And instead of moving forwards with help, having to stop one med that definitely was helpful, and unable to keep trying one out to see if it WILL be helpful. I have every right to be forcing myself to ‘be’ and to expect those closest to me to understand how exhausting the mental and physical burden is.

The brain fog is an aspect I haven’t touched. I think mainly because menopause also comes with memory issues. So, I got home and was very sure that I left my shopping in the trolley in the parking lot. Then I couldn’t find my car key to go check if that was so. Then my son brought the key, telling me I’d left it in the ignition. And yes, all the shopping was there. But I can’t recall if I put the trolley away or just left it there in the parking lot for a trolley guy to find. And I hate that. I usually try go put it back safely or put it against a pillar so it doesn’t roll into a car. But I don’t know what I did.

And that’s just a bit of it. I could not find my phone. Yet I’d brought it to my room. These things seem mild, but forgetfulness and mental fatigue are bad. Especially when you have children who need to be medicated. (Did I tell you I’m on a huge ‘let’s limit the meds and try supplement with supplements so they don’t have to use as MUCH?” And also trying to help my definitely ADHD four year old who can’t be medicated anyway. I need my brain. I need to remember all the exercises my children need for vision therapy, for occupational therapy, and to remember to plan their school work.

I was going to post this as a status, but you see, there’s lots to say because it doesn’t end with tears of heartache.( Typing while I listen to my screaming, over reacting son. There’s an emotional pain that comes with special parenting that I don’t even try to raise awareness of. A daily, constant, grinding worry and draining, gnawing anxiety.)

See, I have different people for different parts of life, and that’s ok. We can’t be everything to everybody, though we can be sensitive to each other and choose our words, say things to those whose health is also intact rather than to those who wish they were healthy- a lesson to me too, to be watchful and sensitive…

She sees me. Her child suffers daily though mostly invisibly too. She knows that pain and trying to ‘live’ at the same darn time are not easy at all. You’re forcing yourself to ‘be’ when you wish you weren’t…I don’t know how long I can go through with the fake “incredible woman” act though! My husband has certainly seen his share of tears when he’s around to see them. Busy traveling all the time!

I have a friend who’s mourning the death of a neighbour who had a very young autistic child, worried about the level of love and care the little one will have, worrying about MY little ones. She sees. She sees the totality.🥹 She too has secondary gnawing anxiety of a sort. And she worries dreadfully about the financial impact – I have to pay the hospital R4050 for the surgery and the doctor’s fees aren’t fully covered either. And who knows how much the anesthetist will charge! It’s a horrible stress to have. I think of the new father who has joined our group who wished he was dead so his family didn’t have to deal with the consequences of this stupid disease.

I don’t need everyone to get that every day is a battle. I don’t even need any one to understand how horrific every day is. Yet some do. And really, that’s most important. My terrible attempts at awareness did make a difference.

There are those who live it and share it, who I can weep with. There are those -the very same person who made my awareness feel like it has failed-who put all the pieces together (the struggling lungs when I exercise, when I wake up from surgery, when I get sick) to make what I know is a very ugly puzzle but is sadly not a puzzle I can throw away. To have parts of me seen is more than others have. Others truly don’t ever get seen at ALL.

And I am thankful. Thankful that though He is as invisible as my diseases, He is definitely as present as they are, no matter what unbelievers and doubters may say.

And He sees.

Today, I choose to be silent about me and how bad things are, like I was yesterday . It’s a bad day. Worse than yesterday, and yesterday was so bad I couldn’t even shower. My husband phoned and I tried to get out of answering his questions re my health. I couldn’t even do all my AS exercises yesterday. Just did some arms and the breathing to try slow down the fusing shut of my ribs. I can’t describe the anxiety in that thought while also not treating the disease at all. I’ve seen this kill people. It plays on my mind even when I’m not in excruciating pain like this week because it HAS to. I HAVE to do those exercises. I’ve already lost more mobility than I should have. And I will tell it to God- and whoever is unfortunate enough to be reading this blog. Sometimes I feel bad blogging about AS or kidneys or operations but then I remind myself, “Your url is chronicallyyours! They know what they are here to read! Don’t sugarcoat anything!” So here I am.

Chronically yours,

‘Grace by any other name’