It's just another day in November

Nov 11, 2016

I live with C-PTSD and often deal with ongoing suicidal ideation (this has been constant since I was a child and, although exhausting at times, I am not at risk of self-harm).  As some folks would know from reading my early posts, I have done a lot of self-work using art therapy, EMDR, talk therapy, inner child work, and finally ten years psychoanalysis with a complex trauma specialist.  Also, all my academics from college and university are in sociology, psychology, and social work.  I have been an advocate for non-violence, and was involved with social and political activism.  I am not a drug addict nor an alcoholic.  I am a high school drop out, and hold a full time professional job I worked hard to get.  I have been told I am an inspiration, and have had people look up to me for what I have accomplished.

In spite of having a childhood riddled with complex traumas from the far end of the spectrum, and being diagnosed with C-PTSD and having early dissociative tendencies and suicidal ideations, I have held everything together quite well for the past 20 years aside from the allergic reaction I had to Zyban about 12 years ago, and have been out of regular therapy for about 8 years.  I thought I knew myself and that my tool box held enough tools to keep myself on a fairly even keel. I grew confident, and stopped being so hyper-vigilant with myself, and let my guard down with myself, and trusted my own thoughts, emotions, and reactions.  Things were looking good.

About 4 weeks ago, I was full on triggered without expecting it, dissociated, and verbally ran down a person who was one of my main supporters to one of his friends.  He was someone who had my back and who I both respect and care about ever so much.  The shame I feel from knowing what I did and the things I said to hurt this person is immense.  I acted in the very way that goes against everything I believe in - I perpetuated an exact form of the abuse I received, and that I have worked so hard to leave behind me, which is a hard piece to accept.  This is one of the few times someone hasn't walked away from me, which is unusual, and even more so as I said some of the nastiest things I have ever said to someone.  I'm not running away either, which is also unusual as I tend to exit when things get too rough for me to handle.  My friend made a very strong suggestion for me to return to doing some self work.  I don't know what is going to happen with the friendship, and it is not my decision to make as I am the one in the wrong.

In the past 3 or 4 weeks, I have been in touch with a crisis counsellor, messaged a lot with a friend who is a therapist, reached out to a private support group of friends, and have had my first appointment with an ongoing therapist.  I have been actively dissociated in all this time, have been working at coming back to wholeness, and am making some progress.

I want to talk openly about what it is like to live with C-PTSD, to have dissociation tendencies and suicidal ideation, and to live with chronic conditions that are all a result of going through so much child abuse and trauma before I turned 16 and created a safe place to live on my own.

*****

What it is like to live with C-PTSD and to have survived a brutal childhood:

- always have to watch myself to make sure that my real past doesn't bleed into conversations with regular people as they usually don't understand or it upsets them too much to hear about it.  I am always editing my past.  People can be incredibly judgemental too.  This leads to great incongruency within myself and is one of the hardest things for me to manage as I simply want to be who and what I am all the time instead of just some of the time with safe people.

- not allowing myself to have kids because I was afraid of what kind of mother I would be, and this was in spite of hearing from therapists that I would make a great mom.

- not allowing myself to risk another long term relationship because I am afraid I don't have the resources inside to be a good, solid partner to someone.  I'm also afraid I couldn't emotionally navigate a serious break up.  I tend to stop dating people I really like and who I could have a solid relationship with because I like them too much.

- having an over-active startle reflex.  I jump and react quickly even when it is totally un-necessary.

- being hyper alert when trying to go to bed.  This is one of the hardest ones to deal with.  Just before bed, I often become hyper awake and have to get everything settled before I can go to sleep.  This is why hearing lots of noise from other apartments bothers me.  Stereos late at night are a real trigger as I was abused late at night with a stereo playing loud music.  This one has persisted in spite of trying to work with it, and causes me huge problems wherever I live.  If I live in a noisy place, I don't get much sleep.  If I don't get much sleep, I can derail emotionally.  A lot of noise can bother me at any time actually, especially if people are arguing.

- I have very few conflict management skills.  The ones I learned as a child were inappropriate and, as an adult, I have difficulty with intense emotions.  Most times, I will simply walk away when I feel too much, and sometimes I will lash out.  I am always really proud of myself when I manage conflict well as it shows that I have learned something.  I've done a lot of personal work and therapy in this area. 

- it can be hard to understand what people mean, especially if their words don't match their actions.

- having a tendency to expect more from people than what they can do or give.

- not always being aware of things that are logical to other people.  I had to learn to carry an umbrella and wear a rain coat.  I had to learn how dentists work and how to go see one.  I didn't know anything about house work, and didn't know how to cook until I was in my 30's.

- I can't always trust my own judgement for myself, which leads to a lot of over-thinking, over-analysis, and second-guessing.  It is anxiety producing.

On the road to getting answers...

Hi Folks!

I received a phone call yesterday with the message that I am booked in to see an Osteopath this January.  I have been in pain for a very long time, and think it is Psoriatic Arthritis.  And I want to dance as long as I can.

Now that is out of the way...

I turned 50 this year.  Yup, 50.  And I love it.  It is the most liberating thing that has happened in quite some time.

As a brief update, I may have sorted out some of my personal relationship issues.  I am dating, and have some steady people in my life - yayy!  I am even learning that it is okay to care and to be cared about, and am starting to ask people for help instead of trying to tackle the world all alone all the time.

I am also in progress with health.  The IBS-D is more manageable now.  I stick to a low-FODMAPs diet most of the time, allowing myself to try new foods and to have small amount of treats periodically.  I still get flare ups, especially if I am tired or stressed, but they don't normally wipe me out as badly as they did in the past.  It is easier to live with restricted food than it is to live with full-blown IBS-D.  I am so grateful to the workers at the Monosh University in AUS for the work they have done, and continue to do, in the field of IBS management and food.

Now...all the updates are out of the way.  I am feeling a strong need to write again because I had a phone call yesterday from the doctor's office telling me that I have an appointment set for January to see an Osteopath.  I am guessing that the blood work that was done a couple of weeks ago came back positive for Psoriatic Arthritis (PsA).  I was diagnosed with skin Psoriasis about 15 years ago, just after I quit smoking.  Yup, quit smoking and psoriasis showed up.  I am one of the lucky people as I it isn't too bad for me.  I get it on my scalp, ear canals, elbows, and a tiny patch in between my toes on a regular basis.  My fingernails always have tiny pits, and my toenails have more severe signs, thus are always painted.  Increase my stress levels, and scales may show up in my eyebrows, and even in a butterfly pattern on my face (checked - no lupus).  Thankfully, it hasn't shown up on my knees since my original diagnosis.  I have learned to live with it, exfoliate an awful lot, use olive oil for cleaning, and often forget it is there as being itchy somewhere is second nature to me now.  As well, many people don't realize I have it as I rarely show external signs outside of really rough elbows due to all the care I take with it.

Well...I am avoiding why I am writing.  About five years ago, I developed plantar faciitis (PF), and it almost crippled me as it lasted for 2.5 - 3 years.  Non-stop wearing of custom orthotics and orthotic-style shoes along with yoga got it to go away.  At least, at the time it was diagnosed as PF, and treated as such.  For the most part, it has gone away but still tends to show up the odd time.

Then, about 2 years ago, my hips became quite sore after spending about 10 days fire dancing every night at a festival.  Fire dancing involves a lot of hip movements, and I had a sloped camping spot so sleeping flat was impossible so I wrote off the pain to that.  Then, it never went away.  About ten months later, it was still there so I went to the doctor who sent me for physiotherapy.  I faithfully attended physio sessions and did yoga, stretches, and muscle rolling like crazy...and, although it abated, it never went away.  The pain would slow down but not stop.

There has been a drastic increase in pain over the last year or so, and I now have to stretch almost daily to keep things within a tolerable range and sometimes pop Advil like jelly beans.  Since last winter, the pain has increased to the point now that, if I actually listen to it within my body, tears run down my face because it doesn't let up or go away.  But...most days I strap on a smile and go about my business and don't say much about it because it is what it is, and I have things to do.  People notice me hobbling at work when I stand up, and I laugh and say I am old when inside I just want to hang onto something tight and cry.  Sometimes I am so exhausted from the pain that I retreat to my comfy chair and watch garbage tv, hoping the pain will slow down enough again for me to get back out to the real world.  There isn't much room for me to have self-pity in my busy life so I plug on, go a bit slower some days, and try to continue on in a normal way.

After trying to live with the high pain levels, I finally broke down with the physiotherapist a couple of months ago asking why my muscles weren't healing, and why the pain was getting worse in spite of doing all the exercises rather faithfully for the previous two years.  She didn't have an answer, and asked for me to contact my doctor for x-rays, which I had done.

The x-ray results show that my SI joint is disintegrating a bit.  The SI joint is the one that connects the hips to the spine.  Thankfully, it doesn't have a large range of motion.  The doctor sent this information to me in an email.  I kind of tottered around camping that weekend feeling a bit emotionally numb trying to digest the information that my body is actively breaking down, and pondering what the best and worst life trajectories might be.  So I came home, and started to do some research.

As mentioned up higher, I have Psoriasis.  And Psoriasis can develop into Psoriatic Arthritis (PsA).  I went to my doctor to chat about the SI joints, and the possibility that it might be PsA.  She wanted to send me directly to a sports doctor, but was quite open to sending me for testing when I explained my Psoriasis to her, and how I have been diagnosed by 3 previous doctors, if I remember correctly (I have only been with my current doctor for about 4 years, having gone to walk in clinics before that so she is missing a bit of history with me).  I am glad she is open when I request testing.  So, that leads me up to the phone call yesterday.  I still haven't heard back from the blood work but, having an appointment made with an Ostepath rather than a sports clinic makes me think my results were likely positive for PsA.

So.  That is a lot of news for me to digest.  I have only spoken to one person about the PsA this weekend, and haven't quite digested it yet.  I am slowly accepting that the pain I live with may never go away although, from what I am reading, it can quite probably be managed.  I have also discovered through reading this weekend that high levels of exhaustion are normal with PsA, which explains why most days I want to fall asleep mid-afternoon, and find it challenging to maintain my usual busy lifestyle.  The biggest thing I have been thinking all weekend, well, since I got my x-ray results actually but even more so now, is that I really want to live.

I want to dance as much as I can before my hips conk out.  I made myself dance at the festival this summer.  I couldn't keep the pace up like I used to, it was harder to swing my hips around, and I couldn't dance every night but, still, I danced.  I danced my heart out.  I danced like I may never be able to dance again.  And I want to continue dancing.  I want to dance so much that if a day ever comes that I can no longer dance with my body that I can dance in my mind and feel it in my body as if I was still actually moving.  I want to dance.

And I want to go sky diving.  Yup, I want to leap from a plane.  That much said, I may just accept leaping off a cliff instead with a bungee cord.  I am not ready to stop playing.

So.  That is what I am facing right now, and am facing most of this alone.  I am not sure what is going to happen next or how I am going to deal with it if I am told that my body will break down but I do know one thing.  I have faced a lot of challenges in my life so far, so I can face this one too because nothing has broken me down yet.  So...

Off I go to tighten my laces and snug up my boot straps because I may be in for quite the journey this year and need a good pair of shoes to do it in.

xxo
Lou