As usual this post will probably be all over the place. If you haven't noticed, I am not one to organize my thoughts before I start blogging....I just let 'er rip. Whatever comes out, comes out. A reminder that I write this for me..I do write a diary but this is a more permanent record for me and an easier way to have a time table of my thoughts, rather than flipping through hundreds of pages. It's long. You don't have to be interested, you don't have to read it all...I even marked the areas, if something sparks your interest more than some repetitive affair crap. The bottom line is we are all human, we share common experiences and if me being open about mine helps you...or even pushes you to finding out more about what is helping me then I hope your time spent reading will be worthwhile. You can always comment for specifics about which books I have read on meditation, mindfulness and self compassion, but honestly I think any book can be helpful.
Safety
Safety has always been of utmost importance to me...well feeling in control is my number one need. They are closely tied together, I need to feel in control to feel SAFE. Obviously the affair ruined all of that. I thought if I was a good wife, I would be safe. I thought my future was in my hands, I just needed to do the right things and I would get what I wanted; and I all I ever wanted was a peaceful, happy life...with Dave. I often, very often, would see little old couples in their 80's and 90's and see us. And I would tell him this, he should have had no problem understanding that I loved him and wanted to spend the rest of my life with him, happily ever after. I thought it was that simple: tell him how much I looked forward to our future, tell him how lucky I felt...tell him...communicate...of course, it wasn't that simple because as I have learned I was speaking the wrong love language. Mine was words of affirmation(and still is but I am trying to adapt and learn a new one because I still don't trust his words) but his was touch and I have never been an overly affectionate person, not really even an affectionate person. I relied on words, verbally and written. I showered him with them. I thought it was keeping me safe, keeping us safe.
It's been 4 years and I still don't feel safe, hell the world has made me feel LESS safe. I am safe nowhere, not in my relationship, not with my health, not at work, not at the grocery store, not even breathing... I have no control...ok, not true, I do have a teeny bit. I can get vaccinated (done!), I can wear a mask (always!), I can socially distance (do my best!) and I can eat right and exercise (done and done). But even doing those things doesn't feel like I have control or that I am safe. So I am meditating, learning mindfulness. To understand that everything is temporary....even this feeling of not being safe. I am pretty sure that it is agreed that we don't have control ...well not over what happens or our thoughts or even how we feel...BUT we DO control how we REACT to them. That's the hard part. A work in progress. I have great days, where I truly get it and put it into practice. But...fuuuucccckkkk....those bad days...they are still so bad. Are they better? I guess I have to agree, they are. Even if just for one moment I acknowledge that it's only temporary, it's a moment of relief. I am still at the "fuck this shit, it isn't working stage" on these days...out loud...but inside I know the truth. The truth is the suffering lies in trying to fight against what I feel. The mindfulness stuff delves into this deeper and it's worth finding a good book to explain it, if you think it could help you. I'll try... the concept is so hard to put into words, yet they did, so surely I can.... so if I am feeling sad, that is just a feeling...if I fight it, it will still be there ..the fight is the struggle...the suffering. The suffering, the struggle, that's amplifies the pain, instead of suppressing it. Does that make sense? Yeah...I know...that's why when you are in the pain, it's so hard to practice mindfulness. Who the hell doesn't want to fight it, block it...run from it?? But I do get the concept...just haven't quite figured out how to use it.
So...back to safety and also STRESS.
.I am not sure how far along I was in feeling safer with Dave back in 2020. But we were definitely moving forward. Not sure we were any closer to the how or why he could do this to me...but I was certainly much farther along with not being triggered by everything. I think a lot of my anger and obsessive thoughts were being diverted to the other huge relationship problem in my life. One that was no longer bringing me joy, just misery, I don't have the desire to go into depth because right now, at 7 plus months out from the demise, I have zero feelings about it. Which is super weird for me. And reaffirming. I completely understand that THIS was what I needed, this what was best for me, but I couldn't let go. I had feelings for my ex husband long after that relationship was over, hell I still have feelings for my high school boyfriend (feelings of regret for how awful I was to him, not wishing I was with him, or anything like that). But I have nothing but emptiness for this relationship. I won't lie and say I still don't think about it, but it is done with no emotion, which, again, is super weird for me. Normally I would have a physiological reaction, a quickening heart rate or feelings or irritation or anger or regret that I wasn't the one to end it, that I let it go on way past it's expiration date and then obsess about why..but nope...just relief. Relief that it is over for good this time, we once went a fairly long time (more than 6 months) and then I reached out and we "made up" but I have NO desire to let that happen again. I see clearly how bad that relationship was for me. Wait...how did I go off on that tangent....probably because it's the one positive that came from the pandemic. So anyway it's 2020...and I am distracted with the other problem relationship and things for Dave and I are going ok, we have plans to both cut back our hours and spend more time together....in May....and then BOOM March 13th...the world shuts down. And we get to see how we like spending 24/7 together. And we love it. It certainly makes me feel safer in my relationship...he seems happy, happier than ever..to just be "stuck" with me. And how could he cheat even if he wanted to? (I know there is ALWAYS a way...). But now my literal safety is threatened...I dealt ok with it as long as I didn't go anywhere. The first couple months weren't bad, but even if you think you are ok, your body knows differently and I am sure it was reacting to the stress. I was having all kinds of physical symptoms...and a super shitty healthcare plan because he was fired and lost our health insurance (yeah USA...now do you see the problem with tying health insurance to employment? The answer is no...no they still don't see it) So my safety felt threatened by the unknown stuff going on in my body and I felt no control about being able to do anything about it. The vaccine was still so far away and I had to go back to work. Then we realized we were eligible for mediCal in November but kept up with the crappy insurance because...well I don't know...because who WANTS to be on welfare? (This is probably tied to my lack of self compassion--if I ever stop rambling about the first 2 "s's" I may get to that.) So, anyway...january comes and I can finally start seeing doctors....fast forward 10 months and soooo much stress along the way....and I have a diagnosis: Sjogren's Syndrome (SS).
Sjogren's Syndrome (SS)
Even though you have never heard of it, it is the 2nd most common autoimmune rheumatic disease, right behind rheumatic arthritis(and can also be found in patient's with rheu arth)...luckily the arthritis more commonly associated with SS doesn't come with the deformity in joints seen in rheumatic arthritis...I don't even know why I say luckily,..I am not sure that means it's any less painful. Typically it's diagnosed because patients have dry eyes and dry mouths. But it can attack pretty much any organ and is responsible for a lot of symptoms that come and go, making it hard to get actual clinical proof of the disease. I, personally, have considered myself to have a dry mouth, since at least 2005, when I last saw a rheumatologist, but back then the blood test specific for SS came back negative. Now it is positive and thus...finally I have a name for the autoimmune disease that has plagued me since 1986. I took the news really well. It seemed like a much better diagnosis than MS and it wasn't unexpected.
Well...I THOUGHT I was taking the news well...and maybe I was...until I saw the neurosurgeon for a follow up...I just assumed that my heartbeat in my ear was related to salivary gland inflammation and he'd let me off the hook for having the angiogram he had suggested on our first visit...WRONG! In case you don't know what an angiogram is...they are going to put a catheter in my groin (or possibly wrist) and thread a wire all the way up to my brain, inject some dye and look at the blood vessels around my ear...while I am awake...surely it isn't just me that finds this terrifying. The risk of stroke, according to my doc, is 0.5%...the internet says 0.3-2%. But that's not a lot you say? Do you know what the % of Americans who have SS is? About 1%. Do you know how many people have both red hair and blue eyes? 1%...do you know how many people have false positive ultrasounds that show blocked carotids? 6-7% ...If YOU are that %...who cares what the number is? So yeah...I am scared. And I am more scared because if they DO find what they are looking for, I have to have the procedure again to fix it (apparently there are too many possible findings and solutions to just do it while they are in there). And if they don't find anything...then I risked my life and nerves for nothing..yes, I know if I survive that will probably not be a concern anymore. So with this new news my stress was at super high levels and my safety was feeling severely threatened. So guess who it gets taken out on...yes...Dave...super kind, super caring, super patient, super willing to do anything to give me back my safety...Dave. It's been 4 years... I can not keep punishing him, especially when it's not really even about him.
Back to SS... apparently one of the worse things that can occur is lymphoma, as in non hodgkins lymphoma...cancer...Now this ONLY occurs in about 6% of SS patients (see my previous paragraph to see why I capitalized only in a completely sarcastic way). I am trying to focus on the "if you know to look for it and it's caught early it's very treatable" aspect but the bottom line, as always, with my brain...is just because I say it and try to believe it doesn't mean my body isn't reacting physiologically to it. I say this because you know what's really bad for SS? Stress. I mean stress isn't really good for anything but in SS it can cause flare ups. After my neurosurgeon appointment sent me to a near freefall (I had been struggling a little before that) I decided "Fuck it" we are having burgers(on rye bread), fries...and then the next night I had potato chips and dip (first time I have had dip in probably 4 or 5 months)...and then I started having physical symptoms (which had subsided with my no dairy, gluten, eggs diet-except when I would reintroduce something, like a white roll). typically day 2 is when I feel the gripping, usually limited to my lower leg if it's just some food I am testing in a small quantity) Well I seemed fine after the burger...made it 3 full days no issue...then the gripping came and not just my leg, but my back too. And it lasted 2 days so far. In 2 days time I had almost half a container of dip...so that's what I am blaming...punishment for being a glutton! I am trying to tell myself ..."See? You do have control" but ugh at the same time, is this really my life now...fruits and veggies, some meat here and there...no bread, no milk..no cake...I know, I know...there are worse problems to have...and then I know, I know...I am allowed to feel how I feel, it doesn't matter if someone else has it worse, I can still have self compassion for how I feel...(Oh I brought up the stress. because maybe it's just the damn stress causing the gripping and not the dip....could be an excuse to revisit dip during a non stressful time...if there ever is such a thing again.)
And that brings me to the final "s"... self compassion.
I just finished reading a book on it. And it could have been written about me. I am SO hard on myself. I have so much empathy for others and so little for me. I think it can change my life and my relationship if I can get my shit together and learn to give myself the same compassion I give to others. My anger this past week wasn't anger at Dave, it wasn't even anger at all. It was fear. I let it out as anger because I wanted to blame someone and I could blame him for taking away my safety....my ILLUSION of safety. And that's what I have been learning...I was never safe, not really, there will always be people out there trying to damage my marriage, only Dave can stop that (well that sounds one sided, of course, there are also people who could target me...and only I can stop that). We must continually, every day, choose each other. And I can't control whether he does that, I can only control what I do. He didn't take away my safety or my control. I still want to know why..why he didn't choose me. But I do realize that there was never anything I could have done to stop it. I never had the control. We had a long talk about me fearing I was unloveable and that's why I am so scared that therapy will show him the why has always been he doesn't love me anymore. But talking it out made me realize that I may have felt that way 4 years ago, but now I know I am loveable...but I also know that not everyone will love me and that still means maybe he doesn't. I have rambled enough so I won't go into the rest of why he'd be here if he didn't love me, but he gets it and I get it. It felt really good to know that I do find myself loveable. And that if I had been compassionate to myself about the fear...there wouldn't have been anger and there wouldn't have been an argument, that was totally not deserved. (and, yes, I am being compassionate right now that it is perfectly human to react how I did...with anger instead of fear...and it's over and done with so there is no need to beat myself up about it, just do better next time)
It's a huge step in loving myself and part of loving myself is to have compassion for whatever I feel. Mindfulness is helping me figure out what it is I feel...not anger when it's fear, etc. and now I need to stop fighting what I feel and tell myself (straight from the book) : I'm having a really hard time right now (mindful of my pain), Everyone feels this way sometimes (imperfection is part of a shared human connection), Be kind to myself in this moment (bring a sense of caring to the experience of pain) and I will try to be as compassionate as possible (firmly set my intention to be self compassionate and that I deserve it). Not necessarily easy...not for me, maybe not for you...but we deserve it.
Getting through the next few weeks (months?- who knows how long approvals and scheduling will take) is going to require a lot of self compassion for the many things I will be feeling. I wish I had more practice before being thrown into such a big challenge but along with self compassion it's helpful to have self appreciation. That means recognizing what is good about you, it's not egotistical to be proud of your good qualities. And I am strong, I am not a quitter, I am up for the challenge and whether I fully succeed, or partially succeed, I will find a way to be compassionate to me!
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