Dear readers, it’s been a while since I last wrote a blog post and my life hasn’t gotten much easier since then. As I cope with my new diagnoses, I am faced with difficult real life decisions. All these choices also kick up a lot of emotional trauma and I’m having a really difficult time swimming these shark infested waters. Let’s recap, shall we?
Eventually, I couldn’t take the pain anymore and asked my GP to send me for a CT scan to see what was going on with my body (February 2023). While I waited for those results, I googled what a CT scan could potential reveal and I discovered something called EDS (Ehlers Danlos Syndrome). Fast forward to May 2023 where a Physiatrist confirmed my EDS diagnosis along with moderate to severe carpal tunnel in my right hand. In May 2023, my GP sent a referral to the EDS Clinic in my province and I was subsequently informed that it’s currently a 2 year wait list for a specialist appointment. In the meantime, I was referred to an orthopedic surgeon for carpal tunnel.
In September 2023, I met with the surgeon about my wrist and potential carpal tunnel surgery. The surgeon examined both my hands and thumbs specifically and said that if my pain worsened in my hands that I could return and he would recommend treatment. I went home and took pain pills rather than book a follow up appointment as I decided to wait until after my carpal tunnel surgery to deal with my hands. In the meantime, my shoulders became unbearably painful and I ended up at the Joint Clinic in my area in early November 2023. They injected cortisone shots in both shoulders and told me not to use them for 6 weeks to allow sufficient resting of the joints and to allow the inflammation to go down. After 5 years of not being able to raise my arms over my shoulders, I’m looking forward to these 6 weeks to be over.
Encouraged by the positive results of the cortisone, and after suffering through several days of not being able to use my hands, I decided to make a follow up appointment with the orthopedic surgeon. After that follow up visit, he informed me that I would need to first get a new referral from my GP for my hands specifically, and he then asked if I’d ever seen a Rheumatologist. He asked me to make a fist with both hands several times, noting that my fingers are slowly turning towards my pinkie finger, which may indicate Rheumatoid Arthritis. My face must have told him something because he quickly assured me he had a lot of experience injecting cortisone into the hands and that I would most likely experience relief and to return to see him after I had x-rays done and a new referral. Discouraged, I contacted my GP and asked for a full body MRI because what the orthopedic surgeon does not know is that my hands hurt far less than the rest of my joints combined. I didn’t intend to return to see him, rather I wanted to see a different specialist to address my pain in general. If I could just get an appointment with the EDS Clinic, I would be able to see all the specialists through them, but I have to wait.
My GP said that an MRI would have to be ordered by the specialist so I requested blood work again. She said that I did have this blood work done in March 2023 when I went it complaining about joint pain in my shoulders, knees, feet and wrist. At the time, the Rheumatoid Factor came back negative, but my GP said that we could certainly repeat it. While I contemplated the fact that I was probably just a hypochondriac as I was told my entire childhood, I sat on the blood work requisition for about a month.
I finally did the bloodwork a week ago and my RF factor came back low, but now my Nuclear Antibody test has come back positive with a speckled result indicating either Sjögren’s (Show-grins) Disease or Lupus. Wonderful. When I look up the effects of Sjögren’s it definitely explains everything I’m experiencing. Though I did test negative in March 2023, the disease can be triggered by a viral infection which can cause this autoimmune disease. Considering my long Covid only cleared up in May-ish 2023 it would make sense that I’ve now tested positive. My GP has now sent my referral to a local Rheumatologist.
A few days ago, I was also contacted, finally, by the EDS clinic for my initial assessment via Teams for December 2023. My carpal tunnel surgery has also been scheduled for late January 2024. Fingers crossed that I am able to meet with the wide variety of specialists who will soon become available to me via the EDS clinic. I suspect that the joint pain / Sjögren’s will be best treated with the joint specialist rather than seeing multiple unrelated specialists.
Mentally I’m handling all of this much better than I would have 5 years ago. I have the mental capacity to hold space for myself now and not lose my shit too much. I’m able to take a step back and evaluate what is best for me. I’ve now started updating my home to make it more marketable by slowly updating my kitchen to meet my physical needs, but also to make it more attractive and I’ve also installed a heat pump to save money on my utility bills. In 1.5 years my oldest starts university and my youngest will follow shortly after. As much as I love my home, I’m no longer able to maintain it. I have to rely on my children to clean it because my joints simply won’t allow me to do so. Now I have to sit with the sadness that I have to move and find a bungalow so I can live on the main floor. I had contemplated a condo but there are too many rules with a condo and I want a back yard to garden and let the dog out. No, my spouse isn’t much help to me at all. He is in his own hell and I don’t anticipate that will improve in the short or long term. How am I managing will all this? I compartmentalize.
Compartment #1-PTSD and therapy. This compartment was tough before, but compared to where I am now, my past therapeutic journey was easy. Now I am dealing with “Them” and what my past trauma has done to my body. I can no longer ignore the fact that my childhood trauma is the cause of much of the pain I now experience. Significant studies show a link between trauma and immune system disorders, Fibromyalgia, MS, and a slew of other diseases. My positive result of (potentially) Lupus is a tough pill to swallow because my mind keeps comparing this to Maeve…. Literally ANYTHING but Lupus would be better. SHE has Lupus and my brain keeps playing this cartoon video for me where, despite my best efforts, I morph into her. As in, I wake up one day, look in the mirror and her face and body is exactly what I see in the mirror. I’m terrified by this. Terrified. I spent an hour this past week crying about it in therapy.
My therapist and I now get to work on this … sounds simple, but I really don’t want to pick this apart. I really don’t. I want to crawl under a rock and never look at the emotions I have about it. What are these emotions you’re asking? Hate, gratitude, owing them a debt, and anger. When I look back at my childhood I have a few mental videos that play in my mind. One is a short 10 second video of the visions and memories of Maeve’s kindness, when she smiled at me, times when I felt she genuinely ‘liked’ me, maybe even loved me, and the memory of her believing me and being on my side when I told her I had been molested by Bruno. The longer movie, the one that wants to override my ‘happy movie’ shows her screaming face, the spittle that would spray when she screamed at me, her shaking index finger pointed at my face, calling me a whore, useless, her facial expressions of contempt, her lack of empathy, her lack of compassion, her accusations that I make her sick, I caused her Lupus, I caused her bladder infections, that I’m the cause of her misery because “you are so rebellious”.
All these accusations as a child are what led to my very firm belief that I am truly responsible for the happiness of the people in my life. When my partner’s mood became so intolerable and he would yell at me and tell me not IF but WHEN he killed himself that it would be my fault because I don’t help him enough, I believed that. I internalised all those feelings until I became a rabbit and hid within myself for years.
One day, I woke up and I realized that I am not responsible for him or anyone else for that matter. I am responsible for myself. Our relationship changed once I started pushing back and not accepting responsibility for his behaviour. My children also positively changed because they felt empowered to ignore his daily outbursts, shouting, cabinet door slamming, and loud cursing. They, like me, realized that major depressive disorder is terrible and we are not responsible for it and we don’t deserve to walk on eggshells. We no longer do, we ignore him now. Which, is probably also not the best reaction, but none of us are equipped to help him. He’s tried every single SSRI and none of them are for him because the side effects are absolutely terrible and do not go away. He recently decided to stop his mood medication, which has made things worse for him. His time to wait for a psychiatrist is 3 years. He has 18 months left to wait. He is now grappling with suicidal thoughts, again. The helplessness is what’s most difficult because I am a doer, a fixer, a problem solver and I can only sit by wringing my hands.
Now, I have to face my own emotions surrounding my strong sense of obligation, responsibility, guilt and shame that I carry from my childhood to adulthood. Therapy now is unraveling why I feel so responsible, why I feel so indebted to my step-mother for showing me kindness. In reality, she did not show me kindness, she was ‘normal’ for a few weeks per year, but my inner child, like all children seek approval, kindness, warmth, understanding, and love. I confuse love with bad behaviour, apologies, and being nice. I still don’t want to look at any of this with my therapist because it’s hard and THIS is where I’ll see just how terrible my childhood was: devoid of actual love, kindness, acceptance, empathy, and compassion. It’s hard because deep down, I choose to believe they loved me and they were kind and loving when in reality this is the fantasy I made up. My internal movies prove it to be false yet I refuse to accept it and instead I choose to just put up a wall of anger and blame which separates me from them and somehow makes me feel strong, but also keeps me tethered to them.
Compartment #2 is my home life now, in the present. There is significant overlap with my past because I used to have and hold five different versions of myself. Now, I think I’m down to 3 versions of myself: Work me, home me, past me and somewhere in the midst of them is inner child me and she floats between all 3 with her past experiences informing her judgements and opinions of today. Confused yet? I am.
Compartment #3 is my work life. Compartment #3 is where I am not ill, I am not sick, I am confident and feel empowered. The woman in this compartment is who I want to be full time. This person has self-esteem, confidence, speaks up, has knowledge, and is open and honest. The woman in compartment 2 is getting there, she is still uncertain, doubts herself, second guesses herself constantly, but feels immense pressure and a sense that time is running out because she wants to integrate all versions into one to be a good role model for her children.
Compartment #2 Margeaux is sad, depressed, and feels very alone all the time. Compartment #2 is the ill woman, the woman who deals with her pain in silence because there’s too much happening at home and her voice is silenced. She doesn’t feel like complaining because her partner takes up too much space and her home life needs to feel happy, balanced and safe. Compartment #3 Margeaux tries to live in compartment 2 to bring strength and to insulate herself from the terrible situation her home feels like. Compartment 2 Margeaux embellishes her space with a pretty kitchen, wall paint, and other pretty things in case she ever decides to run. Compartment 3 won’t allow her to leave or run, but compartment 2 needs the assurance that she can if things get too rough and she wants to disappear, or if her husband does kill himself, she needs a space to retreat.
Only working through Compartment #1 can I integrate Compartment #2 and permanently live in and with Compartment #3. It’s a process and it’s so very difficult to navigate each area of my life, but keeping them all separate is what is keeping me sane. It’s like being a toddler and having a plate with 3 different sections, none of the sections are allowed to touch each other so the plate itself is safe an uncontaminated. I can visit each area of myself and never get so overwhelmed that I feel like I’m in breakdown territory again. When I had my breakdown, I lost all the separations of my compartments and nothing was filed the way it was supposed to be filed away. My brain was a big messy disaster. Like the toddler’s plate where the peas are touching the potatoes and now it cannot be eaten because it’s been contaminated. Now my brain is stronger, but it’s also resistant to revisiting the past because I’m deeply afraid I’ll make excuses for their behaviour. I’m afraid I’ll feel kindness, compassion, and empathy for the 2 people who raised me and I’ll go back for more.
My resolve to never return is strong; I’ve also slammed the door on my past emotions. This past week I noticed that I haven’t quite thrown the key away and those emotions are just below the surface. A little bit of poking, is all it takes to bring back that shit storm of feelings. I also understand that I have to “live in the past” in order to “feel the emotions”. Until I dive in, allow myself to re-experience my childhood, I’ll never be over that deep cutting pain. I have to feel it all so that I can identify the emotions, sit with them, and rationally see for myself how wrong my childhood really was. Right now, they’re just words to describe my experience. Only once I’ve confronted and can see how detrimental holding in all my feelings and actively refusing to admit how abusive my experiences were, can I truly let go of the anger thereby severing my trauma bond.
This is why telling trauma victims to “not live in the past” is so very unhelpful and offensively insulting. The reason we suffer from trauma is precisely because we never dealt with the past and the only way to deal with the past and move on is to relive it. The only way to relive it is to revisit and briefly live in the past. It certain doesn’t mean I intend to unpack and live there, but I do need to process what happened otherwise it will haunt me and hang over my head forever. I really want to be free of the chains that bind me to the dark places I used to call home.
I’ve decided to put a bit of a time limit on processing my past. My goal is to slowly make my house a happy home so that when I’m through processing all the shit I’ve been through, I can move to a different home, one where those 2 have never set foot. One where I don’t move anything they ever gave me. I intend to purge every single last possession they gave me, purge the emotions they imprinted upon me, and start my retirement years in a home that makes me happy. A home that doesn’t remind me of my father telling me I am a poor parent while standing in my kitchen, or the place where I had a mental breakdown, or the place where my neighbours attempted to bully me. So, Karen, Kyle, Caren and the other jerk should take note that 4.5 years from now once the kids are off in post secondary I will move and likely be able to semi retire. I say semi-retire because I truly feel I’ll die if I do nothing, but the pace at which I’m living my life now is unsustainable.
Being a parent, breaking the cycle, being a role model, and teaching children how to navigate life is the hardest thing I've ever had to do. It's even harder because I also have to re-parent myself. I am always aware that I'm being watched and that what I do, how I do it, what I say, what I don't say will have a long lasting impact. It's a lot of pressure, sometimes it feels like the weight is too great, but it's also very rewarding because I'm excited to see how they turn out. I'm excited to see who I really am.
Read from the beginning:
Prologue : Family
Chapter 1: The Early Years
Chapter 2: Protector: 1979-1981
Chapter 3: Pre-Teen Years 1981-1987
Chapter 4: Teen Years: 1987-1993
Reality Bites - The Truth Reveals Itself
Chapter 5: University: 1993-1998
Chapter 6: Young Adulthood
Healing
Chapter 7: Parenthood: 2007 - now
Comments
Post a Comment
Thank you!