Naps and Sleep with M.E. [Discussion]

Brain fog: the everlasting screen of dust that accumulates in my frontal and occipital lobes, pausing any type of thought construction or concentration. I could stare at a wall for hours and it’s as if a transparent sheet lay over my eyes, limiting my ability to function cognitively in that moment that might last a few minutes or few hours, or maybe the rest of the day and into the next. It’s the thing that puts me in bed sometime between 1 and 6 pm on a daily basis; it allows me to rest and recover temporarily, and yet it keeps me from sleeping at night. Keeps me from functioning like a non-ME person. 

The time is currently 11:35 pm and I lay here in bed, in the darkness, wide awake, yet exhausted beyond description. 

I can’t blame anyone who has trouble understanding it. I, myself, have trouble understanding it, and yet I just have to manage somehow, in some way. 

Any tips? Comments? Similar feelings? I’d love to get a discussion started on this topic. I hope we can help each other out and possibly get some ideas of how to function with the brain fog-nap-no sleep cycle. If not, just the acknowledgment from another being of this struggle helps tremendously. 

So, let’s talk sleep! 

Why I’ve Been MIA…

Warning: I am currently trying to write this through a tsunami of brain fog, so please be patient as this post might not be the most legible.

It’s been a hell of a few months.

Finishing finals, starting and finishing a 10-week course smashed into 3-weeks, applying for jobs and grad schools, getting interviews and disappointing application results, relationship struggles (platonic and romantic), depression and anxiety skyrocketing, ME symptoms progressively getting worse and occurring more often, and finally, the holidays.

Fuck the holidays.

I was talking to my therapist last week about how to get through Christmas Eve and day without totally wanting to crawl into a black hole and lock myself in there until all the chaos was over with. She gave me some good advice on ways to alter my hateful cognitions towards the holiday season, such as thinking of the littlest of things that I actually don’t mind about this time of year. I love the snow, and spending time with my grandma. Thinking about that helped me get through, but seriously, I’m just so happy it’s all over. [Hopefully] things start to settle down after tomorrow night.

I just realized I’m rambling, so let me digress…

I’ve been very busy, and ill, and I won’t lie to you, I haven’t wanted to write about ME as my symptoms have become more aggressive over this time.

I don’t know if I even want to write about it now, but the point of this site isn’t just for me, and I need to remind myself of that.

While I have been struggling with a bunch of different shit and been feeling so alone and misunderstood, I completely cut-out this unbelievable support system RIGHT HERE, and I apologize deeply for my absence.

So, in return, you all get to read about my sudden spike in GERD issues. YAY!

GERD. Or so I call it, the devil if there is one.

It’s gotten SO much worse in the past few months. At first I was thinking it could just be other factors such as holiday food or the stress from school or a combination of a plentiful of things, however, it has not subsided with these triggers out of the way. In fact, it’s only gotten worse. I blame my ME.

Does anyone else have terrible GERD or acid/digestive issues associated with their ME? I’m seriously struggling to be kind and patient with myself on this one as I have yet to encounter someone with ME that has bad GERD, as well.

Any thoughts? Any suggestions?

Anyways, I’ve missed you all, and I can’t wait to hear back from you wonderful warriors.

Sleep tight,

A. xx

Being Invisible

I sprained my ankle pretty badly this past Saturday night. I was simply walking on flat grass and rolled over it, lucky enough not to break it, but still having to now endure 4-6 weeks of recovery. I have been using crutches for the past three days and let me tell you, crutches + M.E. body pain/aches = horrible, awfully painful and fatiguing experience. Doing some research, I ordered a knee scooter that (fingers crossed) should be delivered tomorrow. It’s still going to be work, but I think it will help alleviate some of the pain from the crutches as I am already dealing with pain from M.E.

It’s just my damn luck. Or I’m just extremely clumsy, which is more probable than luck being the cause of my misfortune in the body pain category.

Since I am unable to go up or down stairs, and my apartment is on the third floor (no elevator), I will be staying with my dad in the suburbs for at least a week or until I am able to put weight on my ankle again. My dad is my best friend; he’s taking care of me since I can’t walk around easily, going to the grocery store so there is actually food in the house (which there never is), reminding me he’s happy that I’m here with him at the house, and overall loving and supporting me through literally every battle I have faced in my young yet matured life.

My dad is wonderful, to say the least, yet he’s flawed like we all are. One of his flaws affects me more than others, though: if he can’t see the pain or illness or cognitive dysfunction, it’s difficult for him to truly believe it’s there. Now, don’t get me wrong, he is 100% supportive of my M.E. diagnosis and seeing specialists, however I think his lateral lawyer-brain way of thinking gets in the way of him fully understanding what M.E. is and how it affects every aspect of my functioning.

I know how common it is for people to have negative stigma around M.E., including the medical community, and I am more than aware how privileged I am for having people in my life who want to educate themselves on this illness to better help me.

I struggle with my illness being “invisible”. Sometimes, it feels like that makes me invisible. Is it wrong to ask someone for validation? Does that make me weak since my invisible illness makes me feel the need to be heard and seen? I really don’t know, but what I do know is this: your feelings, your thoughts, your emotions, your pain and aches, your struggle with M.E. are all 100% valid, and I hear you.

Never forget you are not alone.

Sweet dreams warriors,

Alyson xx