The story continues

(4) Dark, dark journal entries

My journal entry in early June begins with the joyful reflections over a family member’s PANDAS recovery.  My health and mental health, however, are not so good.

My last few months have been consumed with mental health struggles— that I have had as long as I can remember— plus the added issues of balance/ dizziness and overall “loopiness.” I learned from sister that the reason my nephew (diagnosed and treated for PANDAS in 2014) used a wheelchair was due to dizziness and balance problems,  not  muscular weakness.

I wrote about my appointment with Dr. Rookie and his follow-up advice: 

I went to a neurologist. He did MRIs and wants to do a sleep study.  And oh— he prescribed me super-sized Alleve (naproxen) and vitamin B.  (As my sister commented later. . .  “was he hoping for a placebo-effect?”) He wanted to add another psychotropic medicine.  and We’ve spent over $4000 on tests thus far— tests that I didn’t want to have done— or at least the second round of MRIs. I asked explicitly to be tested for autoimmune encephalitis. He said he didn’t want to do that right now. I really think he thinks I am crazy. This is so painful for me. I hate not being believed. It feels like my life story.

I don’t understand why the process to be diagnosed has to be so difficult and complicated. I just want to be better. At the present, we are pursing the Cunningham Panel (a blood test that can help diagnosis PANDAS)  with the clinician treating our son. 

I told my husband tonight that if I don’t have PANDAS, then it will take me some time to figure out how to cope. The other “option” I see is that I just have terrible mental issue that is treatment resistant. 

But as is, I can’t go on. The demands of my life (managing people and tasks) is so difficult and draining. I feel so much stress. The last 2 weeks have been brutal. I have been very depressed over not being able to function well— executive function— while trying to host my mother-in-law, celebrate our son’s graduation, coordinate and host events I signed up for long ago, help the girls end their school year strongly. To cope, I have spent HOURS playing solitaire. It is soothing… Why?

My mental- cognitive limitations  proved to be depressing. . . . and costly:

I feel so terrible about myself. My self esteem is already low, but it has dived to deeper levels of frustration. I feel like a loser in every possible way. Even today, I learned that I was supposed to fly out to see my family last night. I missed my flight (because I thought the flight was today).  The whole reservation was cancelled and I had to rebook the flights.   I feel like this is a direct result of my mental, emotional and cognitive state. I just can’t figure out how to manage information, deadlines, and tasks. It feels like an overwhelming blur.

I noticed in the last few days the tasks that are overwhelming for me: laundry, loading and unloading the dishwasher, putting my son’s meds in his pill organizer for the week, making appointments (the phone calls), paying bills or even looking at our checking account, filing out paperwork, etc. These things create anxiety. It’s crazy. I feel stupid that these simple things make me feel stress.

The rest of the journal entry gets far too dark and personal to share.  I will say this. . . . I did tell someone.  Having a few, trusted people know me, love me and validate me has saved my life.

Categories: The story continues