So I am still alive. Still working out. Still trying to achieve a good balance. Scheduling has always been a bit of a nightmare for me really. I strive to get everything done by 3 pm and depending on whether I can accomplish that and if I have energy (mental and physical) to spare I might make dinner. I rarely make dinner to tell you the truth at least not the healthy from scratch dinners of my dreams. Why do I have to get everything done by 3pm? Brain death. My brain is encased in ever present fog. In the morning I am able to focus better. I have energy. My mood is generally more positive. By the end of the day the fog can be incredibly dense. My energy levels plummet. After dinner (around 5:30 pm) I am pretty much exhausted. Sometimes I have seizures at the end of the day. The Depression that I had been running from during the day catches up and whacks me over the head. Everyday is a race. Everyday I try to pack in whatever I can before my brain goes all mushy and wonky and unpleasant. Once Sam comes home around dinnertime what I need is a good long snuggle. I need comedy. I need to unwind otherwise I can’t, despite being utterly exhausted, sleep and if I can’t sleep I go fucking nuts. Like really certifiably nuts. I am sure there must be a better more normal way of coping but I have not figured out how to do it. Having such a tiny window of time to fit my life activities into is challenging and completely mad but so is life.
Once again I have decided to revamp my training schedule. Here is what I have come up with this time!
Though I have not included it I do 30 minutes of yoga every morning before breakfast. If I didn’t do this session I would be overwhelmed by body pain/stiffness (because I have PTSD and Dissociative Disorder I hold a lot of tension in my muscles, have a lot of nightmares, and position my body awkwardly and painfully when I sleep). It also helps with the Depression and honestly keeps the suicidal thoughts at bay. For me yoga is medicine.
I would like to do more Hiit because it’s fun but it just doesn’t work at the moment. Thursday I have 4 hours of intense physical activity at work so there is just no way. The other days of the week I work at the factory. Some days I am carrying boxes around. Some days I have to stand the entire time. Some jobs are more physically strenuous than others. I find I am usually quite tired when I get home. I also walk more since I have started working. Now that it is getting warmer I am also going to have to find some motivation for gardening! So in the end I am just not as sedentary as I used to be so the longer, more frequent Hiit workouts don’t make sense. Saturday’s Hiit I can manage a longer session but Tuesdays will have to be shorter preferably 30-40 minutes.
I am investigating the possibility of taking a yin yoga course on Sundays. The course is 75 minutes. If I am able to do it that would be 75 minutes plus my 30 minute morning yoga plus 30 minutes to 1 hour of lower body training. The yoga class is also squarely at dinner time. Which is sort of an issue because while I am very hungry around 5pm I tend to have no appetite after 6 pm (my body switches into that weird hibernation cycle I spoke about earlier). Still Sunday would be the only day that I could feasibly do it and I do love yoga. Also yin yoga is more relaxing than say Ashtanga Yoga. Maybe I could eat half my dinner before and half of it after? I have to see how much it costs. I also have to see if the hubster would drive me into town!
Monday- Back/Posture/Pilates/Ballet (I have Kyphosis and I figured I need to spend some extra time on strengthening my back and improving my posture.)
Wednesday- Upper Body
Thursday- Yoga (my cleaning job is just too exhausting to allow for any other type of workout)
I have 6 weeks of my new routine scheduled into my journal. I am excited to see how it goes! On another unpleasant, read with caution note I am having major digestive issues. I have found that I can’t take aspirin at all, it just ruins my stomach. I was sick with the flu a while ago and so I took some aspirin for the body pain and fever and it severely irritated my stomach lining (which caused excruciating pain) and gave me a nightmare case of diarrhea. 2 years ago when I took aspirin this happened as well. I am not even taking a particularly strong aspirin but it causes really intense stomach pain. The stomach issues can last for weeks after. Yesterday my stomach was so enlarged I looked to be 6 months pregnant. I don’t think it is at the level of internal bleeding but I think it would get to that level if I had taken more pills. So if anyone knows any natural fever reducers and pain killers for the next time I get the flu please let me know!
To avoid a lengthy summary of my situation please refer to this post
Some time in February I went to visit the Neurologist an experience I wrote about in the above post. I expressed very little about my experience with Dr. S as I was, at the time, extremely emotional. When I went into the meeting I was under the impression that I was meeting with my new Neurologist. I was excited and hopeful that I was going to get answers and treatment options, something Dr G had not provided. I had no idea that I was stepping into an ambush but that is exactly what it was an ambush.
Dr. S was extremely condescending and accusatory. When I explained the mix up to her in detail and with the collaboration of my husband she flat out told me that I have memory and mental health issues and thus I cannot expect anyone to trust my version of the story. She also indicated that I should not trust my own experience given my issues. I walked out of that appointment in tears. I cried for days afterwards. Sam wanted to report Dr. G for gross incompetence but I told him without written proof we don’t have a case. I am a terrible record keeper and tend to delete and dispose without much consideration so I figured even if we did scour our records the likelihood of finding something to corroborate our side of the story was unlikely. I wanted to move forward with treatment for PNES and put everything behind me. The experience was horrible and it severely damaged my trust in the health care system. Worse than that the experience has caused me to second guess myself to an unhealthy and debilitating degree.
I have been doing extensive spring cleaning over the last few weeks and today I decided to tackle some of our paperwork a task I have been dreading for years! Today I found proof a certified letter from Dr. R stating that I have Epilepsy. I can’t tell you how much it means to me. Why is it so important? Because it validates and corroborates what I’ve been telling Dr. G all along. Dr. R told me on numerous occasions that I had Epilepsy but Dr. G and Dr. S insisted so much that I was lying that I had started to believe I’d brainwashed myself and all my friends and family besides. I needed to see written proof. No I don’t plan to pursue legal action because I want nothing at all to do with any of the doctors involved. No I don’t plan to find a new Neurologist for treatment of Epilepsy I am still proceeding with this being psychological in origin. I doubt the competence of every doctor involved but the facts remain that medication was not effective so I have no choice but to take an alternate route.
I received an unsettling letter in the mail recently asking why I wanted to discontinue counseling services. I emailed my therapist promptly telling her I had no such intentions. I asked her why she thought I wanted to discontinue and it appears that when Dr. S discontinued my services that she attempted to discontinue more than just my Neurology services. Am I pissed off? You bet but I have a feeling if I attempt to contact Dr. G or Dr. S in any form they would just make a mess of everything. I do wonder if I need to find a new therapist as this one has been in contact with Dr. S and Dr. G and has already been confused. I fear I might not be able to straiten the situation out properly and establish a trusting relationship.
Now for some advice
Save everything from your doctor
Ask for copies of all your tests and records and keep them
Record conversations/appointments especially if your are suffering from any memory or mental health issues because they will dispute everything you say
For me the first step to accepting my new diagnosis is to own it. I’ve written a note to Facebook to inform my real life friends and my cousins of the new diagnosis. I have published a lengthy post here at Curious Flowers describing the ordeal, albeit ineptly, and linked it to my primary blog Mindlovemisery. I’ve even adjusted my about pages. I can’t imagine going through every post I’ve ever published and omitting the word Epilepsy nor can I feasibly contact all of my followers. I wrote my mom a long email as well describing the situation. I have no idea how she will take the news. I am not sure if she is familiar with PNES or the dissociative disorders. Actually I feel fairly certain she isn’t familiar with PNES but I have no idea about the latter.
I have even written an apology letter to Dr. G. Dr. S allowed us to read Dr. R’s notes and what he reported to Dr. G versus what he said to us (on numerous occasions) does not add up. Though I am not satisfied with many aspects of my care I felt it necessary to clarify the source of our misunderstandings now that I have discovered them and to apologize to her for my suspicion. I never fully trusted her because of my loyalty to Dr. R. I can admit that. I also wanted to give her the opportunity to clarify. I am still uncertain as to when she made the diagnosis of PNES if recently then it is perfectly understandable that I am only just hearing word of it myself. Even though she is no longer my doctor and thus I have no reason to see her again I still wanted to take responsibility. She has already emailed me thanking me for my letter and has informed me that she will contact me by telephone. Yikes I am so awkward on the telephone.
I guess that’s stage one complete now I need to study PNES!
Generally when meeting a new doctor I prepare a mental list of questions and concerns for discussion. I rehearse the list countless times but when faced with the actual appointment I forget in large part what it was I intended to say. This time I thought to hell with it I am just going to write a list of instructions for myself. That’s right actual instructions. I tried to keep it brief 1/2 a page or so. My appointment today has left me in a state of turmoil. I was diagnosed with Epilepsy by Dr. R in the local hospital. Dr. R seemed certain of my diagnosis. Sam was present during all my appointments and he was under the same impression. I was transferred (or so I was informed) to a specialist in another hospital Dr. G so I could be evaluated for surgery. I even underwent the week long surveillance in hospital. Dr. G was not forthcoming with information on my condition. Sam also attended my meetings, we both asked questions and very little was ever revealed. During my week long stay I had 2 seizures the nurses monitoring me informed me that the seizures read on the EEG but my doctor later told me that the EEG had not picked up any unusual brain activity. She also discredited the previous EEG analysis of Dr. R (he had told me that there was activity as had the nurse administering the test). I asked her point blank could I have something other than Epilepsy and bizarrely she said no there isn’t any other explanation. When I told her I wanted to seek psychological treatment for Depression she advised strongly against it.
I requested a change of doctors in part because of communication difficulties. I just met with my new Neurologist will call her Dr. S and lo and behold she tells me I have PNES (Psychosomatic Nonepileptic Seizures) that could be the result of a Dissociative Disorder. Dr. G and Dr. S work together and I get the impression that they are good friends. Dr. S has access to all of Dr. G’s clinical findings. Not once did Dr. G ever tell me I had PNES. Sam accompanied me to the meetings to act as a translator and not once did he ever hear her say any such thing either. I am pretty sure we wouldn’t forget a thing like my diagnosis, at least he wouldn’t forget it. Now I am told that I need to go to a psychologist for treatment. Why on earth did Dr. G advise so strongly against it in the first place? If I had PNES and she knew that to be the case why didn’t she want me to receive treatment? I still receive notices every time I have a doctor’s appointment that I am supposed to be keeping an Epilepsy journal, I should know because I received a doctor’s appointment today reminding me to keep my journal. Why when I went to the emergency room did they mention Epilepsy when I apparently have no such diagnosis? It is all a little perplexing to say the least. I could have started treatment for PNES years ago and would have done so if only they’d clarified my diagnosis. Encase you are wondering/confused it was not Dr. S who rediagnosed me she was just reporting Dr. G’s diagnosis. Needless to say Dr. S did not believe me when I told her that Dr. G had never informed me. Had it just been me visiting Dr. G I could actually accept that I might have misunderstood because of the language barrier. I could even have accepted that I forgot because god knows my memory is horrific but there is just no way Sam would have missed it. Dr. G not only didn’t inform me of my diagnosis she also left me completely stranded. When I went to the psychologist I told them I had Epilepsy (it must also be in my records incorrectly) and so they didn’t consider Dissociation at all because as far as they were concerned my disassociation was explained by the Epilepsy. No telling what I might have gotten diagnosed with had I underwent an evaluation! God knows I have already been given a shit load of dangerous drugs.
As for how I feel about the diagnosis? Dr. S says that PNES seizures can look nearly identical to Epileptic seizures and you can’t always tell the difference without an EEG. If that’s the case then it is a plausible explanation. I feel utterly humiliated. I have told my friends and family that I have Epilepsy. I joined an online support forum. I identified with the disorder and it explained so much of what I was experiencing. There is an element of disbelief still but I will get past it and work with this new diagnosis. I am sure I will understand/accept more after I do some research. I am excited that I have treatment options whereas before medication wasn’t working. She told me over and over that PNES doesn’t mean I have fake seizures and that I don’t have any conscious control over my seizures just as I didn’t when I thought had Epilepsy. Of course I understand it intellectually but emotionally it will take a while. I am also embarrassed that I didn’t figure it out by myself (well I actually did consider that I might have some type of Dissociative Disorder). The thought that I might, with treatment, be able to learn again is just outstanding. I remember in high school during exam day I aced all the tests, top scores but I couldn’t remember having even taken the exams. The thought that just may be I could have that brain, that I might have that data stored in my brain, data that I might be able to recover is amazing. Even if I can’t recover lost/misplaced data, if I could learn again, make memories again that would be a dream come true. In the course of writing this I have already become more positive. Treatments going to be a bitch though I imagine I am going to have to poke around at all the mutilated ouchie bits. I am also a little pissed at Dr. G and Dr. R whom I actually did trust. While I am glad Dr. G did a lot of testing what the hell was she thinking not telling me about my diagnosis and advising against the only treatment that might work? I just have no idea.