Hello, world. Today is one of those days. If you have a mental illness or live with chronic illness, you will know what I mean by that. For those of you that may not understand right away, I will attempt to use my bipolar brain to explain it meaningfully.
This has been a tough week. Three doctors visits and too little sleep are the biggest culprits. Still, I’m doing my best to keep going. Let me tell you what’s been going on.
Be careful, that rug might fly out from under you.
As if being chronically ill wasn’t enough of a challenge, it often feels like every time you finally are starting to get a handle on things, someone comes along and pulls the rug out from under you. I’ve never literally experienced that, but figuratively, it seems to happen all too often.
This was a stressful week. For one, I saw a new Rheumatologist for the first time. The first visit with a new doctor is almost always an adventure. For once, though, I didn’t have to spend the first fifteen minutes explaining that I have Familial Mediterranean Fever (FMF), just what that is, and what it means for me and my life.
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The doctor had a dry sense of humor, but I laugh easily and was entertained. However, in a moment with no attempt at humor, he informed me that my Familial Mediterranean Fever diagnosis may not be correct after all. That would explain why the colchicine is not stopping the attacks completely.
I didn’t know what I’m about to write before, and I honestly can’t say that I fully understand it now. If you are reading this and I am wrong in anything I say, please correct me in the comments.
From what the doctor said and the information I looked up and read later, it seems that you have to have two mutations, or two copies of the mutation, in the MEFV gene. That makes sense since in most cases FMF comes from two parents who have at least one copy of the mutation. As a recessive gene, a patient typically needs to receive a copy from each parent to develop and be diagnosed with Familial Mediterranean Fever.
In my case, though, I only have one copy, and I’m honestly not sure what that means. Both my diagnosis and future treatment seem to be in purgatory for the time being.
Oh, hello. It’s nice to meet you, brick wall.
At some point, I will write more about my journey to an FMF diagnosis. I’ve commented on it a little in the posts Familial Mediterranean Fever – What Is It? and FMF – A Day In The Life. The short story is that it basically took almost 30 years of being sick to get an FMF diagnosis and that by a doctor that had never even heard of the condition before meeting me.
Diagnosis finally came about two years ago. The four years prior were especially bad with near constant symptoms, with a low-grade fever and abdominal pain being my constant companions.
Finally having a name to put to my symptoms and the validation that I was not crazy (well, not only crazy, lol), was a huge relief. My quality of life is still not great (if the FMF doesn’t have me down, I’m dealing with bipolar depression or mania, migraines, or one of a dozen other issues), but I was able to get some relief by starting a colchicine regimen.
The rheumatologist’s casual comment this week felt very much like running into a brick wall. By the next morning, my bipolar brain had sapped all my motivation and I felt entirely defeated. If my diagnosis is wrong, does that mean I have to start the whole process over again with test after test after test…? I don’t think I have the physical or mental fortitude to go through all of that again.
The other big headache is that if it is not Familial Mediterranean Fever, then all my validation is gone and I’m back to having psychosomatic symptoms. Yes, I know that statement is more than a little melodramatic, but that is the direction my bipolar brain went this week. Blame it, not me. I’m just an innocent bystander.
I don’t go back to the doctor for three weeks. In the meantime, I know that I have one copy of the K695R mutation in the MEFV gene. What exactly that means, I will expound on more in a future post when I understand better myself.
Yes, as a matter of fact, I can do everything.
In the midst of everything else, my bipolar brain has been a little overactive. We’re trying a new medicine to see if it will help with mania-fed anxiety. I’m sleeping about 3-4 hours a night, and keep accepting more projects that I can possibly do. For instance, I am helping an author edit his manuscript, I’m trying to write a book of my own, I’m feverishly learning about blogging and social media promotion, and I’m trying to have at least a hint of a social life again.
I’ve also been losing a little time. There’s a whole post dedicated to that item, though.
Yes, flashing red lights are going off everywhere. Isn’t that normal for the bipolar brain? It seems like my lights flash more often than not.
Unfortunately, I can see that a few things are slipping. Blog posts are much less frequent than I would like, though I am working on a long post that will be full of journal prompts and will include a free printable. It’s just turning out to be more time consuming to produce than I had first thought.
There’s also been some money spending that might be considered excessive. I won’t go into it, but I need to have someone take my credit cards for a few days.
Don’t worry. After 25 years in treatment, I know when my bipolar brain is in danger. As long as I’m still sleeping some, I know I’m somewhat okay.
Mania can do that?!?
On a side note, my doctor shared an interesting bipolar brain story with me. Mania actually produces adrenaline, and that’s the reason why we can go for days, or sometimes weeks, without sleeping.
Well, there was this 90-year-old woman that was near the end of her life. She suffered from COPD and congestive heart failure. Walking to the bathroom was often enough to get her winded, and she was on a constant flow of oxygen. She was also bipolar.
As she was not expected to live long, someone (not the doctor) had the brilliant (sarcasm!) idea to stop giving her the bipolar meds she had relied on for decades.
An ironic thing happened. A few days later, her daughter went to look for her and she was gone. Not dead, but physically gone.
Our little old lady friend and fellow mental illness warrior had left behind her oxygen and her family behind and had walked all the way to the town they lived near.
It’s amazing to me to think about what bipolar can do. If we could learn to control that adrenaline flow, there is probably nothing we couldn’t do. The story blew me away, so I had to share it today.
So, this is what my bipolar brain looks like.
This might feel a little off topic, but please bear with me. After all, what is on-topic today?
I learned some time ago that in my case, the condition of my home reflected what was happening in my brain. When depression hits, things get dusty and clean laundry ends up in piles around the house and never gets put away. New groceries end up on tables and counters and doesn’t get put away either.
When things are working properly, the house is kept respectable and things are put away where they belong. That, unfortunately, does not happen as often as I would like.
The times that mania strikes, suddenly furniture starts moving and large objects either enter or leave the house. Things are clean, but still in disarray.
I know I’m not alone in this. In fact, I have a good friend with bipolar that seems to be a little sofa obsessed. According to his wife, every few weeks or months, he comes home with a new sofa for the family. However, invariably, after a few more weeks he grows tired of the new sofa. Eventually, late one night, he’ll drag the beast out to the front lawn and then haul it off to God knows where the next day.
Sofas are not my weakness, though I would love one that was more comfortable, but there have been some large items coming and going in recent weeks.
I’m curious, is this a common symptom of bipolar? Does your house and life reflect what’s going on in your head?
Mine corresponds so perfectly that I can often see the change in mood by looking at the house long before I can feel it.
Do not go gently into the night.
It was a tough week, but I have no intention of giving up. Neither should you. Living with chronic and mental illness frequently means that life stays in a constant state of flux. Ride the wave. If things are bad right now, they will get better.
On the other hand, if things are good right now, well, you probably know that darkness is coming. I say, fight that darkness with all you have. Cling to the good days and show the darkness that you will not be defeated. That’s my goal, and I believe we both can achieve it.
Please forgive me if this post is a little scattered. This is what the bipolar brain really looks like, and it’s often not pretty. However, on my side, writing this post has been very therapeutic. It’s nice to get the spinning out of my head so that I can look at things objectively.
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Until next time, keep fighting.