Today, after meeting up with my sister in all but blood, there’s a few things to write down.
First of all, I’m not better, but I’m gradually feeling less shitty. Especially the past few mornings were okay. Still not feeling great, but definitely not as flashback-y as the past year has been.
Secondly, we talked about childhood memories. I think I already wrote it down once before, but I have some memories of being a baby and very young child. I’ve decided to write them down.
I remember lying in my crib, with faces above me. I also remember the toy that was hanging above my head. I remember it made an awful racket.
I remember having my diaper changed. I remember being cleaned with wet wipes and I remember the talcum powder shaker. I remember the powder landing on my butt and I laughed. I remember loving that part of diaper change, but I can’t find anything about it in my mother’s diaries of that time.
I also remember the dresser that I was changed on and the blue changing mat, but I remember their shape and color from third-person view: my brother, who is 3,5 years younger than me, was also changed on that. So maybe when I was a baby it wasn’t blue. I do remember that the mat I was changed on was a plastic-y surface and that didn’t feel nice. It was sticky and .. chafed? Wasn’t nice..
I remember the day my brother was born, when I was 3,5 years old. I don’t remember the part where I cried because my mommy was in pain. I do remember the part where my father brought me to the neighbor to “watch the gold fishies”. He left me there and went back home. I remember the aquarium. I don’t remember its exact location, but I do know that as I watched that aquarium, I was at the same time facing homewards. I don’t remember coming back to the house, but I do remember demanding that my mother also hold me as a baby. She thought it was funny and laughed at it, but she did hold me as requested.
I remember being brought to kindergarten. I don’t remember much, except being in the child’s seat on my mom’s bike and riding past a hedgerow. I remember kindergarten being to my left hand side and it having a huge window through which you could see the toys.
I remember the day I realized I was a “me”. I was standing on the first floor of our house, my back towards the corner where the walls of my bedroom door and my brother’s bedroom door met. I was looking towards the staircase and the thought that I was a “me” that was distinct from other people was suddenly clear as day to me.
I remember sitting in my dad’s lap and looking at a children’s program called “Tik Tak“. I remember an episode where the book would open and you would see, on the left hand side, a woman, repeated three times, with an umbrella. Now I don’t know if this imagery is correct, exactly. I do remember the day that that book picture somehow “clicked” in my brain: I could suddenly see that it was a woman. Before that, it had just been moving shapes, but I suddenly saw what it represented. Pretty awesome stuff, for a .. what.. one or two year old?
I remember sitting on my parent’s bed. My father was sitting at the head of his half of the bed, or lying down. The spatial arrangement isn’t entirely clear to me, from my memory I would be floating somewhere to the side of the bed, so I might have been in my mother’s lap. It was before my brother was born. I remember telling my mother that I would marry my father and that she was allowed to come to the wedding. I remember my parents laughing. My mother also wrote this down in one of her diaries.
I remember the day my parents brought our dog to the pound. I was four. My brother was in the baby seat beside me. I was sitting on the left hand side of the car (which is weird because later I would always sit on the right and my brother always sat on the left). I remember that I knew that this was the last day I would see Boeddha. So I deliberately looked back to take a good look at him, so that I wouldn’t forget him. I’m sad to say I cannot remember anything else in first-person from that dog. I do remember seeing Boeddha’s face when I looked back that last time. He didn’t realize what was happening either, he just looked ahead. I remember being very frightened, uncertain and knowing that this would be the last day I would be with my childhood friend.
I remember the first day at primary school. I remember my mother telling me at the door to the classroom that she would go now.
I remember playing with the water, in the first or second class of primary school. We had a ‘waterbox’ and a sandbox, both at table-height (table-height for a child of 4 or 5 years old). I didn’t like the sandbox much, the sand got everywhere and that didn’t feel nice. But the waterbox was fun to play with. I remember sitting on the floor while the teacher in the first class of primary school did things on the school board.
I remember getting my first set of glasses at 4/5 years old and being very insecure about them. I remember my mother told me I was smart, like an owl. When I came to school, I proudly said this. One of the kids automatically started hooting like an owl. It scared me. From that day on, the kids loved to hoot at me, to make me startle. It haunted me all through primary school. In hindsight, I can see that the other kid was also 4 or 5 and that he had no clue what he was doing. He just heard the word ‘owl’ and started hooting. As a hypersensitive child, I assumed this was a direct response to me. Of course, the kid was just a kid and seeing my response was probably a Pavlov response…
I remember in the first class of primary school, a teacher had scolded me for not looking them in the eye. I don’t remember the scolding, but I do remember walking alone through the hallway, worrying about this.
Little did I know that my social skills were already lacking due to my upbringing. My mom really gave it her 200%, but she did miss quite a lot of things, despite her efforts and best intentions. From my early childhood, my father told the story (and somehow seemed to delight in retelling this story a thousand times) that my mother was hysterically upset that she couldn’t “make me quiet” when I was still a baby. A similar story holds true for my brother: A visiting acquaintance was the one who exclaimed “Don’t you see your child is hungry??”. I later read a story about a mindblind mother who realized that she needed to figure out what her baby needed, but was stressed out because she couldn’t figure it out. My mother didn’t make eye contact, didn’t really hug much, didn’t play tea party, didn’t do peekaboo, and all the other stuff that normally goes on. She did give us clothes and toys and fed us. I do remember playing ‘airplane’ when I was being fed! And I remember my mom loved to color drawings, so she would also color in pictures right next to me and we would show each other our work. I remember once showing her something I colored by only doing the inner edges. I loved how this effectively gave the impression of it being colored in. I was sad that she didn’t like it. She shook her head and continued on her own drawing.
Intermittently, my early childhood was somewhat of a still face experiment. As a hypersensitive child, I interpreted the world wildly fast and in technicolor. I saw and felt everything, but of course my interpretation was that of a frightened child. Nobody really explained things to me that I needed to have explained. Still, my mom did care for me, and I did cry for her when I was scared in primary school and she wrote that she picked me up. I learned that I had to explicitly tell my mother what I wanted or she wouldn’t know, but I also risked being rejected because when we were both uncomfortable, she would choose soothing herself over soothing me. In hindsight, I do think there was some attachment to our dog and to my mom, but I doubt if it was a secure attachment, more like anxiously attached. An attachment nonetheless. (I think it all went awry later as my father gladly used me for as his personal dumpspace for all his issues and did me serious harm in terms of attachment by kicking me and by alienating me, effectively rewriting my history by making me reject my mother. I’m still recovering from this and the relationship with my mom is steadily getting better and better. She’s one of the most optimistic people I know and in that sense she’s becoming more and more of a role model for me, which is a very joyous thing to discover.)
I remember in the second class of primary school (we were 6/7 years old) that a classmate started stuttering. I remember that exact moment and thinking “She’s scared”. Years later, it turns out that was the day the teacher had grabbed her, shook her, called her an annoying child and had told her never to tell anyone. She had repressed the memory and during hypnosis she rediscovered it. She suffered from several nightmares, but after that, her stuttering that she had suffered from for 20+ years completely disappeared. She told me it only reappeared once and that was when she became a mother and was uncertain of whether she was doing well. But once that feeling subsided, the stuttering disappeared again.
Anyway.. these are some of my early childhood memories.
The year 2019 has taken its toll. It was like a bulldozer running me over and stripping me of all my defenses. But this also brought some other things. My high sensitivity, for example. A lot of the stress hasn’t left my body yet, for sure. If anything, 2018 and 2019 has shown me what an asset my sensitivity can be if I let it guide me. This is starting to become more and more true in terms of caring for my body.
Sometimes I get the feeling that it’s up to the patient to first get a clear picture of what’s going on… I think healthcare has, in some GP practices, stagnated into a rigid structure. Healthcare doesn’t actually have (take) the time anymore to study a patient’s case. Instead, you (and they) have 10 minutes to present your case, be sorted in the ‘relevant’ or ‘not relevant’ bin and be on your merry way.. My GP never made a move to refer me (except for repeating three or four times “maybe an endocrinologist”, but never actually a referral), while I was steadily getting more ill. I have heard other stories of patients having to ask for referrals themselves and figuring out themselves what’s going on. This system is untenable: GP’s need to be able to have half an hour or an hour per patient at least! Now that it has happened to me, I am obviously encountering more and more people who have fallen through the cracks of the current system… No system will ever be perfect, but surely there must be more we can do!
Today, I talked to one of my best friends who is like a sister to me about not having a meaning/purpose in life. I’m spiritually adrift. But I’m starting to feel like I want to do something about this…
Did you know I once asked my previous GP on if he knew what the white fingers was that I often got? He said he’d look it up. When I came back the next consultation.. he didn’t know! He hadn’t found anything in his medical literature. Fuck, dude, I typed it into Google months later (should have done that sooner) and you can find it. Just Google “white fingers!”.. Sigh. Oh well..
I have the same with my optometrist. It was not until I changed optometrist, that my new one said “has anyone ever told you about the risks you have with your severe myopia?”. Nope.. If you get glasses at age 4, nobody stops to think if any informational steps have been skipped in the past..
My experiment going gluten and dairy free in 2018 showed that I’m actually.. dairy intolerant… in hindsight, a part of me knew this! In secondary school, after downing the obligatory glass of milk in the morning (on my mother’s inflexible insistence that milk was a Good Thing Period) my brother and I would bike to school with heavy mucus in our mouth and throat. We would spit to get it out of our systems, it was quite frankly a disgusting thing to have to do but if you can’t breathe… I told him once “It’s the milk”. Also, I have been sweating like mad for over 20 years. I would have t-shirts in secondary school that used to be white, but were yellow under the armpits.. 🙁 Body odor, like, yuck yuck. Heavy deodorant in university.. Although quitting dairy in 2018 didn’t do anything for the true illness I was suffering from, I did recognize: I’m not sweating! And so, a few months back, I gave up dairy for good. I sometimes have a teaspoon of cheese and although I’ll notice the next day, some deodorant is enough now. But mostly I abstain from dairy.
Another thing I am about to try again is B12 supplementing. I’m going out tomorrow to buy B12 supplements. Why? Because before I got sick, I tried that a while and it actually alleviated my Raunaud Syndrome. Looking at the symptoms list of B12 deficiency from stichtingb12tekort.nl, I don’t know but the following symptoms stand out to me:
- bumping into things (especially in my twenties)
- feeling dizzy/faint (especially in my teens)
- fine motor skills (handwriting?)
- lack of sense of smell and taste (yep)
- feeling cold (sometimes)
- having cold hands and feet (absolutely!) and
- ringing in the ears (notably, I have this often, but not all the time so maybe..?).
There’s another list out there on vitamineb12tekort.nl which includes
- difficulty seeing in the dark (I used to have this BIG TIME!)
- high sensitivity (They write “the entire nervous system is affected by a vitamin B12 deficiency: The soft fatty material (myeline) that surrounds our nerves and protects them, is damaged (demyelinisation). Compare it to stripping an electronic wire. It leads to all sorts of ‘weird’ complaints and ‘stimuli’ and pain in arms and legs etc. Also it leads to an extreme sensitivity for stimuli, sound, light, moods and ‘energies’ of other people. One becomes and is very touchy, vulnerable, jumpy. Also leads to quicker fatigue and jumpiness.” Erm… okay..)
- anxiety (yeah, no that’s mostly C-PTSD for me I’m sure, but I do know before my sterilization it got worse before my period. However, I can’t find any correlation between menstrual cycle and B12 and one study in baboons measured no difference. But heck, who knows, if B12 supplementation helps, I’ll take it)
- higher chance of vaginal infections and UTI’s (bingo! My medical file contains two things: CPTSD and gynecological issues)
- poor wound healing (yes, I once had to have stitches removed a week after they were applied, but it wasn’t healed yet by a long shot)
- mouth ulcers (I used to have those a LOT, not so much anymore I think)
- neck pain or lower back pain (yeah, no.. that’s stress for sure)
Interesting question: was this more prominent when I was on birth control or not? Can’t go back, but there is some research done on whether birth control can mess with B12 and some of the research says yes. Awesome, isn’t it?
So, that’s an experiment I’m going to do. Interestingly, Essentials of Rubin’s Pathology has the following to say
Specific or isolated malabsorption refers to an identifiable molecular defect that causes malabsorption of a single nutrient. Examples of this group are the disaccharidase deficiencies (notably lactase deficiency) and deficiency of gastric intrinsic factor, which causes malabsorption of vitamin B12 and consequently pernicious anemia.Rubin, E., & Reisner, H. M. (2014). Essentials of Rubins pathology. Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins.
This also makes me hopeful: There are undoubtedly many more things to do to support my body in recovery. I’m doing cold showers and some yoga which seems to be helping. I’m reaching out for other therapies I can follow and Joep found out that our physiotherapist offers boxing for PTSD. I’m going to give them a call on Monday. And who knows.. maybe, looking at the list of symptoms, maybe supplementing B12 could turn out to be a bit of an additional boost for my physical and mental health.