About that “struggle” I mentioned in my last blog post four months ago … yeah that bitch is real. Apparently I’m the human equivelant of a Rubix cube that just when you think you’ve got it figured out you realize its far more complex then you originally thought. That “brain fog” – such an unassuming , harmless name for something so indescribably terrifying and debilitating – wasn’t just another symptom of my EDS or POTS. This was a fog that crept in and fully engulfed my brain. Day by day I just figured I was tired because of my midnight shift, or that I just needed to excersize more (which is a bitch when you’re too tired to even move never mind do any kind of meaningful routine), or that all it would take is one more day to get through and it would get better.
Except it didn’t.
Each day all I could do was make it through until the next. It was incredibly taxing to complete basic self care skills, I literally had to force myself to take a shower , brush my teeth or even eat.
It wasn’t making any sense. And it kept getting worse. The severity of this brain fog from hell was made clear on our first family trip to Disney. This trip was a huge deal, I grew up in a disney house, we went on several Disney trips growing up and now my kids were at just the right age for us to bring them. We stayed at Port Orleans French Quarter – a resort I had always admired every time we passed by as a kid and I was beyond excited to stay there. We had a character dinner at the Crystal Palace in the Magic Kingdom and my son who typically has debilitating social anxiety jumped up for pictures with each character. We did the Not So Scarey Halloween Party, my favorite holiday and worked for months on costumes – my daughter was Mulan , I was Mushu and my son was a knight.
I knew I was pushing my energy limits by doing half a day at the park but I figured I’d be ok. I was dead wrong. By the time dinner time rolled around I had to keep sitting down to keep myself from falling down. I felt like my brain was detached from my body. Everything was so loud, I couldn’t see clearly or focus at all. I barely made it through dinner at the Crystal Palace and sat on the curb waiting for the parade to start. I remember leaning against a stroller to nap. My husband had to help me up and asked if I wanted to go back to the room to sleep.
I did not want this stupid bullshit to ruin our vacation. I pushed myself through 3 trick or treating stations with the kids. My son was getting antsy at that point and wanted to go back but my daughter was in full fledged trick or treat mode. So I went back with him, stumbling through Adventure Land, passing Jafar, the Tiki Room and various barriers until I finally found our way back by the Crystal Palace for the exit. I was heart broken. My son didn’t mind because he wanted to go back anyways, but I wasn’t able to fully appreciate our special event because my mind and body couldn’t keep itself together.
That’s how our whole vacation went, I would last half a day and spend the other half asleep. The time I was awake I was dragging myself around, miserable, not able to make any kind of decisions, just operating out of pure necessity. It still breaks my heart to think about it. It was clear that something was very very wrong. I had been use to the tired achyness from Ehlers Danlos, but this – THIS was an entirely different, more vicious kind of symptoms. It did not come with the tired wave of visual disturbance “sparkles” and extremity tingling like POTS, it did not present like anything I had ever experienced before.
When I look back I realise that it had slowly been gaining on me but I would explain it away or try to nap it away, but it eventually set up camp in my brain. I knew something was off at my brother’s wedding the month before, but weddings are energy consuming for everyone involved so the urgency wasn’t as apparent as it was a month later when we were in Disney.
I reached out to various people online, facebook, read articles, tried to make sense of it.
I have Ehlers Danlos type 3 (hypermobility), POTS (Postural Orthostatic Tachycardia), and over the summer I had numerous allergy testing done sue to bizarre reactions and a nagging feeling that something just wasn’t right. My allergy results were all over the place, they even tested me for a gluten allergy which came back negative.
I made an appointment with my genetic specialists that I had been seeing at Brigham & Women’s in Boston. I was told that I was very Symptomatic for Mast Cell Activation Disorder. Mast Cells play a key role in allergic responses, and in my case they were switched “on” all the time, which damages every organ system in your body – including your brain. I would do both a blood test (for Mastocytosis) and the 24 hour urine test, the tryptase level for Mastocytosis was normal/negative, the urine test was positive , which meant I had Mast Cell Activation Syndrome. These Mast Cells were literally attacking my brain and other parts of my body.
She set up the referral to Dr.Norton Greenburger who is one of the doctors who put this disorder on the map. With my test results, past medical history and current presentation he diagnosed me with Mast Cell Activation Disorder. This requires me to be on the allergy “cocktail”of Zantac,Zyrtec, singulair and Cromalyn Sodium ampules.
As I’m gaining back my senses, recognizing and respecting my energy levels I’m learning more and more about how complex my medical state is, but there is so much research suggesting a strong correlation between EDS,POTS and MCAD. There has to be a reason why, and if it’s not curable there has to be a way to get doctors to recognize it earlier so people don’t have to go on suffering for years before or even IF they get diagnosed. When I tell you I felt like I was actively dying, I’m not being melodramatic or trying to gain sympathy. That is the dark honest truth about this debilitating brain “fog” , I was spending a majority of my day laying in bed because I felt like I had to lay down before I fell down. I was barely functioning , that is not living. Every day I just kept pushing myself to get that much closer to my appointment with Dr.Greenburger, and now after a month on my new meds I’m slowly starting to feel like I’m getting my life back. I still struggle with the ups and downs of energy levels, but they actually exist now. I feel some of my personality come back, my creativity is making an appearance and I actually FEEL – not just merely existing. Sounds a lot like depression huh? I know the battle is not over, this is not a winable war, but my goal is to manage my symptoms and enjoy the life I was given, even with the frustration and unpredictibility this disorder leaves me with. Like they say, fall down 7 times, get up 8. Just keep getting up.