You need a lot of energy to be sick.

52a6d5d54a457e7b847a1d0eed4ae827

Another stereotype or stigma that I’d like to debunk right now is that people living with disability or chronic illness are lazy.  That they have SO much free time and can “do whatever they want” because they are unemployed.  We’ve all heard versions of this abelist stereotype.

It’s just not true.  People living with chronic health issues are as varied and different as people who are well, healthy, neurotypical or able bodied.  They are not lazy.  Being disabled is not a lifestyle choice.  Some people with disabilities are able work/volunteer/attend school and some are not.  Some have varying abilities depending on symptoms on different days.  Some people (like me) are “high functioning” (I HATE this term) and work full time, parent, take care of a house all while living with a high level of chronic pain and various chronic symptoms of mental illness.

But whether you are working or not, raising kids or not, volunteering or not, on social assistance or disability payments or not…I can say with 100% certain that being chronically ill is a lot of work.  I’d even say that it’s a full time job.  So we aren’t lazy, we are warriors.   Our work just isn’t valued by society, and a lot of it is invisible labor just to survive.

Please don’t perpetuate this stigma.  And please trust that each individual person knows what they can and cannot do.  If someone with a chronic illness is not working/volunteering/attending school it’s probably because their symptoms are too severe and they are not currently able.  Or maybe their workplace/school is not accessible for someone with their particular health issue.

It’s NOT because they a) don’t want to, b) aren’t trying hard enough, or c) are lazy.

Tonight, I have almost no spoons.  I drifted through the day, feeling foggy and having trouble concentrating.  I crashed on the couch and struggled to get up again.  I feel mentally and physically exhausted.   I didn’t run a marathon today, I didn’t work out…but I DID expend a great deal of energy coping with my health.

Before work I had a doctors appointment.  It was a new doctor, so there was stress and anxiety last night and this morning.  I got test results that weren’t what I was hoping.  I got requisitions for blood work.  I booked two follow up appointments.

Then I went to work.  Tried to focus, tried to get things done.  Took a break, got the blood work completed.  Went back to work for another hour.  Left at 3:30pm for a counseling appointment.

I see my counselor every 2-3 weeks.  I’d like to see her more often but it’s difficult to fit in around my other appointments, my work schedule, my kids, kids activities and kids medical appointments.  Again, as I mentioned, people with chronic illnesses aren’t lazy.  We often have numerous medical appointments that need to be juggled and fit in around already busy schedules.

Counseling is work.

If you are a survivor of trauma, and your counselor is pushing you, even gently, in the direction of healing, counseling can be exhausting work.   At the end of the hour I feel incapable of more than curling up in the fetal position on her couch and crying.  But instead I drive home and carry on with my day.

My counselor has been fairly patient with me.  She’s realistic about the fact that I have a LOT of current external stress in my life and she’s let me talk about that.  But in the past 6 months she’s begun to push me to talk about my past, my childhood, my core beliefs, and my trauma.  She’s also started to call me out when I disassociate in the session as a way of coping with feelings, memories and flashbacks.

I like disassociating to cope with feelings, memories and flashbacks.

It’s kinda my thing.

Most people don’t even realize I’m doing it.  Even fewer people would point it out.  Nobody else would purposefully try to stop me from using it as a way of coping.  I’ve always thought of disassociating as a self preservation, self protection mechanism.  I always thought I was coping if I zoned out to make a flashback less intense or make it stop.  I was coping.  It helped me survive, but maybe now there are other options…

My counselor wants me to stay present.  She wants me to TALK ABOUT what’s happening for me.  She wants me to describe it.  Or at least she wants me to stay with her in the room while it’s happening.  It’s very uncomfortable.   “But I LIKE disassociating!”  I whine…  “But it works!” I attempt to convince her.

She reminds me that I’m not alone.  That she is there to help me out of the feelings, body  memories and sensations.  That I don’t need disassociation and that maybe by zoning out I’m not actually allowing myself the space I need to heal.  Maybe I’m just stuck in a constant space of just surviving.  Maybe disassociating is actually taking up an intense amount of spoons to maintain.  Maybe zoning out is zapping my energy.

Chronic complex PTSD is exhausting.  Chronic pain is exhausting.

But maybe, just maybe doing the work of counseling and trusting the process might help restore my energy in the long run.  It’s draining work at the moment just trying to convince myself to TRY to approach my healing without disassociation.

I might have many flaws, I know I am not lazy.   Neither are you.  Keep fighting that stigma and keep surviving and thriving.

 

 

Medication Fog.

SONY DSC

For whatever reason, my migraines have been out of control the past few weeks.  It’s been incredibly frustrating and painful.  I started seeing a neurologist about 9 months ago and have been getting nerve block injections which had been significantly reducing my number of severe pain days per month.  I was really pleased.  The neurologist is a great doctor, he believes me, doesn’t treat me like a drug seeking addict, and the treatment he offered was helping.  A rare positive medical experience for me.

This month the pain came back with a vengeance.  Last Monday, I came home from work and cried for over an hour.  I took my emergency codeine pill to take the edge off the pain for a few hours and it made me feel a pleasant sort of relaxed high.  Taking any type of medication is always risky for me, because what will relax me one day could agitate me another day.  Anything that has the potential to be psychoactive can cause unwanted adverse effects.  I don’t like feeling high and I if I use substances it’s in an attempt to feel normal.

Tuesday by the end of the work day I wasn’t feeling well.  The pain was terrible, my heart was racing, I felt weak and dizzy and dehydrated.  I had pain at the base of my neck which was new for me.  Normally my migraines are around the supra orbital nerve and focused behind my right eye, blurring the vision there and causing visual distortions.  To be honest, I was a bit scared I might be having a stroke.  Often by the 3-5 day mark of a severe migraine I begin to worry that something is really wrong, it seems hard to believe that SO much pain and so many strange symptoms are caused by “just” a migraine.

I was afraid and a bit desperate for the pain to stop so I drove myself to the ER.  I have a lot of trauma around the medical system (see earlier posts in this blog) and I was pretty reluctant to seek care at the hospital.  At triage my file was marked as emergent (I think they were worried about stroke too!), and I didn’t wait too long before seeing a doctor.  Luckily, the doctor reassured me that there wasn’t likely anything more serious going on, “just” a bad migraine.  He offered some IV medication and IV fluids because my heart rate was really too high.  I was relieved.  He believed me.  He didn’t treat me badly.    The nurse came to start the IV and I figured things would be pretty much okay from there.

I was wrong.

About 5 minutes after the IV medication ran through, I got suddenly hot.  I had an intense sense of panic and agitation and I knew I had to leave.  I couldn’t really think clearly.  My IV was attached to the ceiling and I couldn’t walk around.  I knew intellectually I could ring the bell and a nurse would come and probably unhook the IV or move it onto an IV pole so I could walk around.  But in my panicked mind, I became triggered to times I had been held against my will in hospital.  I started thinking that maybe the nurse wouldn’t let me leave, or that she’d make me wait for the doctor and that I’d flip out.  Then she’d know I was completely panicky and wouldn’t allow me to leave.  I was afraid.  I pulled out the IV and I ran away.  I fled.  I just left the ER and didn’t look back.

That was a rough night.  I was scared they would send the police after me so I got a friend to call the ER to explain that I’d left due to a panic attack.  It took a full day for all the anxiety symptoms to resolve.

And the migraine was back within 3 hours!

Two days later I saw my neurologist for another nerve block.  He told me that severe anxiety and agitation is a side effect of one of the IV medications in about 2% of people.  He told me not to take that medication again.  No shit!  I was angry that the doctor at the hospital hadn’t informed me that there could be potential psychoactive side effects. I would not have consented to the treatment as I know that I’m extremely sensitive to this type of adverse effect.  I’ve experienced versions of the same from SSRIs and from anti-anxiety medications.

My neurologist wants me back on another medication that can control migraines.  It’s called topamax and it’s one I’ve taken before.  I reluctantly agreed because it can also help with some of the other chronic pain I have which might be fibromyalgia.  The only problem with this medication is that it causes a lot of side effects, especially at the beginning.

My body feels like a toxic soup of drugs.  I have a hard time processing it all.  And I still have a headache.

The side effects when starting medications that cross into the brain can be triggering for me.  Not only do I feel dizzy, nauseous, off balance, foggy and exhausted, it also brings me back to times in my life when I was taking high doses of psychiatric meds.  It brings me back to times I overdosed on them.  It brings me back to the nights where I was sexually assaulted.  When I woke up, drugged, half asleep to find him touching me.  Fighting to stay awake, but the drugs dragging me back into sleep.  The feelings of confusion between my nightmares and what was really happening to me.  I don’t like that feeling.

So the side effects and adverse effects aren’t just unpleasant.  They aren’t just an annoyance.  They don’t just impact my ability to function smoothly at work.   They are frightening and they remind me of being completely unable to control being abused.  Being helpless, frozen, confused and afraid. They remind me of not having control over my body and not having the capacity to consent.

So if I’m complaining about adjusting to this medication or if I seem not quite myself.  It’s more than just a bit of dizziness.  It’s a lot of vulnerability and processing not feeling in control of my own body, both the pain in the present and the abuse in the past.   It’s all interconnected.