Thursday, March 19, 2015

Gasping for Oxygen~ Thoughts on Anemia, Depression, and the Comfort of The Closet.

~This picture was after a full day in ER (due to other reasons not in this post) and three recovery days after. I was still feeling awful but did not want that to define my life...so I decided to take the kids to my next medical appointment in the city, put on some false eyelashes and loads of make up and pretend I was fine. I still had to take breathing breaks in the mall and my husband had to carry my purse, but for my kids, they will look back on these pictures and not realize how crappy I was feeling because I look well. That matters sometimes in feeling well. It can't be done all the time, but sometimes when I force myself in moments when I feel moderately crappy, it works sort of! Sometimes faking to make it actually does work. Being an Aspie I am pretty good at masking...sometimes masking leads to living...but if done for prolonged periods of time will have the opposite effect so I am not saying to mask regularly. I lived that life once and it is NOT worth it but sometimes it has it's payoffs.~

Anemia
It's so hard for me to breathe. The air feels too light. The substance of it seems to be missing from my oxygen. I take gulping breaths through the window because cold air seems to have more of a bite. I have been craving rocks and ice and those comforting plastic nose things the hospital gives oxygen in.

I have been varied forms of Anemic since teenage hood. It started with my heavy menstrual cycles and has alarmed health professionals since. I have had the iron shots (*see post note), the constipating supplements, and the consistent blood tests until I can get my levels up. My mind forgets how absolutely awful it can feel.

I know the warning signs. A few months ago I knew I was Anemic again but since it was/is my normal, I tried to ignore the fact that stairs took the wind right out of me. I told myself it was because I was out of shape even though I am participating in rehabilitation Physio for severe Fibromyalgia issues. I told myself that panting after a walk could be from lack of being outside and the light heart pains were a 'healthy' sign of exertion. But I knew my own bullshit. I knew I would have to face myself and the blood work because I know when I am just lightly Anemic (my normal) and when it has crossed into affecting my whole system. The tip off usually comes from my Native/Hispanic Grandfather, "You are so pale missy. That is not how my granddaughter is supposed to look. Go get some sun missy. Are you sick?" This happens over and over again because he is cute and wants me to have my sun kissed look back, but also because it's my first warning sign that my levels are progressively going down. I pull out my fake bronzer to avoid the pale comments but sometimes I forget to put on my make up armour that hides the bruises under my eyes and the pallor of my skin.

I participate in denial because I don't like the monitoring. I don't love the poking, prodding and freak outs of potential bowel diseases or causes of inner bleeding. They never find anything. It's just my body and crazy cycles, but just in case I have developed something new, it has to be checked. I comfort myself with the fact that this has been happening for 21 years. If I had a weird cancer or bowel disease I would have already been dead from it. I am thankful for the advances in medical tests and professionals who genuinely DO care but medical tests are the ONLY thing in life that can drive me to borderline suicidal thoughts.

Depression
I have been severely depressed, in the past, with diagnosed PPD, PMDD and PTSD and NEVER have I answered 'Yes' to the suicidal tendency question. Not because I am somehow braver or strong than those that do, but because I love life too much. I love the small things like flowers and plants, the colour green, peach or nude coloured lipstick, the smell of books, my kids smiles, and my husband's eye crinkles. I have the mind of a poet in the sense that I live sensually and I soak up so much beauty...which is why hospitals put out the light. There is no beauty to see, hear or smell. I need beauty to live. It's my drug. I like being alive even when I am severely depressed. I still have the moments that transcend existence. I latch on to hope and bleed it dry. My husband has answered yes to THE question when he was in depression and I have thought about what the difference was in him and I, because frankly, my depression scores were always higher. Some of it is being Autistic. Being Autistic I had to constantly overcome being and feeling different, overwhelmed, and isolated. That builds resilience. I have been told I have resilience in spades and I bet I can thank being an undiagnosed child/teen in the educational system for that. Something good tends to come out of something bad and sometimes negative consequences come out of something positive. I have had different faiths in different stages of my life and I think it is petty to say that faith in God will get one through anything. It's not true. But faith DOES contribute to well being, even faith in hope or life or colour. Some of it is fear. I fear no longer hearing the voices of those I love, I fear the consequences of taking my energy out of the world before it is ready, I fear the consequences of what I would leave behind. That's just me, but if someone mentions a Colonoscopy I can almost answer yes to the suicide question when no other dire moment in my life has brought me close. I wonder why that is? Why would I rather die than do a medical procedure or take certain drugs? Perhaps it has been the prep I have done for a similar test before and will NEVER do again but I think there is something more to it. Maybe it is not meant for my specific journey. Sometimes we have intuitions for a reason, other times it is just fear. I have not figured out my line yet. I now can manage blood tests because I have had so many and request the Butterfly. If you are a bleeder or paranoid of blood or needles ALWAYS insist on having them use the Butterfly. It makes such a huge difference and I no longer bleed forever after a test. I hold up well under emotional and mental strain in general yet can not handle some bodily ills. At the same time, I have a high pain tolerance with some random pains yet very low with sensory overload pain. Perhaps this is part of being Autistic?

My life currently feels like an Air Supply song; floaty, airy and breathy. Yea, I see the irony. This last cycle has wiped me out to the point that after showering I have to sit down and take a few desperate breaths. I feel like a cancer patient which is not how one without cancer should feel. I feel empathy for anyone who has any condition that causes problems in breathing and then I take on their energy for a moment and sit with their grief, I send out warmth and light wishing there was something more I could do because I know I am in a good place. I know in a few months I will breathe fresh again and my blood cells will plump up. I have a wonderful doctor who has seen me two days in a row and will discuss my treatment plan again (I have had other health complications and my white cell count is also up.) I know the drill, the iron and Ferritin are extremely low, my Hemoglobin has gone steadily down since the steady stream of iron shots in 2007**. I'm cold, exhausted, out of breath, pale and irritable but more than that, I get depressed, because I am a mother. I am supposed to be able to do the dishes and minor responsibilities without being out of breath. I am not allowed to do "any form of exertion and definitely no running." That's funny for anyone who knows me. You will never see me run unless it is an emergency. My physiotherapist won't allow me to run either due to my muscles, alignment and spine anyway, so there is that... I already have to pace myself with Dyspraxia and Fibromyalgia, so having something additional to deal with in the day to day responsibilities can add up to me feeling like I fail. Especially when I am strict about my health, what is put in my body, what I do to manage stress and my overall dedication to  being a contributing member of my family. I feel depression sink in when I feel incapable. I fight so hard to be capable (see THIS post) so when an additional health complication comes up, I feel myself sinking and clawing my way up to hope and validation that I am worthy. My mantra is I am worthy because I EXIST. If I believe that of other people, I have to fight to believe it of myself first.

The Closet:
In my world, behind the solid, closet door is my safe zone. I have found beauty in that deep, dark, small place. Under the clothes I sit in the dark. This is when I am at my worst. If my husband finds me there he knows. More importantly, if I am sitting there it means I recognize the signs of depression in myself. I know what to do, have wonderful support, know how to help others, and how to analyze the whole deal. With all that knowledge I am able too keep a tight lid on  most of my lighter depression. Most of the world does not even know when I am in it but when I am in the closet I can no longer deal with the outside. I just need the smell of our laundry detergent clinging to the clothes, the quiet wooshing of my heartbeat telling me that life goes on, and the dark caccooning my body from sensory overload. Often my children will join me in there. When they were little they would bring their flashlights and make hand puppet figures on the wall. It was one of their favourite times. "Oh look, mommy is sitting in the closet- it's time for campfire stories and puppets!" And suddenly my world became focused. I still felt the same, but I knew there would be an end to the dark feeling. There always is. Until the moment when I could rise again, I soaked up their innocence. I saw their perspective and knew that when they were older they would remember my walk in closet as the camp out place. I don't believe in shielding children completely from the broad spectrum of human emotion but I do believe in protecting them from a few mature facts. They didn't know that mommy was overwhelmed. They just felt safe. Somehow, from their feelings of safety, I felt safe too. My husband eventually coaxed us out in the world to live, but those moments of quiet reflection saved me from my tormented thoughts. The world  became MEANINGFUL because of closet doors, cozy clothes, sock puppets and flashlights.

And that is what depression is like. If it's not understood it's just a dark closet perceived as cold and scary. With a little light, a bit of empathy, a touch of innocence the closet is still a closet BUT  for a time it becomes a cozy haven.
Most of you probably perceived that the Walk in Closet is also a symbol of depression. A simple room in which the occupant will not stay in forever. One day the occupant will slowly step into the hallway to life. And eventually the closet will be full of stored clothes and distant memories. But the lessons will stay as understanding is developed. Instead of a scary place this symbol becomes a brief hiatus. It can be dark, it can be stuffy, dank, closed in with this feeling of ' I am never going to get a breath of fresh air again!' But it is only one room of life. Just one. Once it is conquered it becomes that camp out spot of both bad and good memories. New doors open, the hallway slowly melts into the entryway and with a final push the door to the sunny outside is once again re-opened. With a bit of help, life comes full circle. Clinical Depression doesn't have to be a home, it can remain a sizeable closet. In the fabric of the interior the closet will make itself known from time to time. Meanwhile the other rooms are beckoning. With understanding and empathy, those with depression will be able to live out of the closet in meaningful and wonderful ways. Judgement, misunderstanding and ignorance lock doors. Loving empathy, wisdom and understanding open doors, freeing the prisoners into a space of colour, warmth and faith...Depression does not have to last forever. Depression can also teach lessons and allow beauty. Depression can be managed. Please have hope and find the proper support to open the doors to the soothing colours of Joy.

Being Anemic is another reminder for me to breathe life. It's time for me to actively build up my blood. It is also time to gratefully take deep breaths, slow down, and practice the beauty of BEING. It's harder than it sounds. It's time to figuratively and physically take in life giving oxygen to revive the cells that make up ME.

Song choice (because I have a weird sense of humour and Air Supply kept surfacing in my mind during this post. Plus, I just love these songs!)


Disclaimers and Websites:
*Be careful what you take being Anemic. I would no longer recommend the shots due to severe anaphylactic reactions in many people as well as other dangers. Read up on posts like this: http://www.washingtonpost.com/business/economy/anemia-drug-made-billions-but-at-what-cost/2012/07/19/gJQAX5yqwW_story.html
I only take iron supplements when it's very bad...or the liquid form and I am very careful about my diet.
**THIS POST IS NOT A MEDICAL OPINION AND YOU NEED TO TALK TO YOUR DOCTOR ABOUT ANY COMPLICATIONS YOU HAVE regarding Depression or Anemia. Anemia can be serious. ESPECIALLY DIFFERENT TYPES OF ANEMIA MORE SERIOUS THAN MINE. See your doctor but also engage in your own health research. Depression is also serious and if you can answer yes to the suicide question you need to see a professional who cares.
*** Websites for Grief or Depression:  http://griefnet.org/ http://www.helpguide.org/articles/depression/depression-signs-and-symptoms.htm

11 comments:

Anonymous said...

Thank you for sharing this post. I've been thinking about you and I'm glad to know how you're doing, even thought it sounds like things are really a struggle right now. I'm so sorry to hear that, but I love how your hopeful resilience shines through even in the darkest times. You inspire me.- Rae

nyssa said...

I get this post. I was a closet person when I had the right kind of closet ( I no longer do). They have always been my comfort places too and I never thought of it in a depressing way. It was so cosy and comforting like a womb. I have breathing issues too but I am too afraid to go for any tests. everytime they did them, they found nothing. even when I'm hooked into oxygen, given puffers and antibiotics ( in case it's bacterial pneumonia)... nothing is ever found.. I know I am allergic to a kazillion things but I can't live in a bubble though somedays it feels like I should be. I get the breathlessness and how exhausting it is. I hate it. Feeling for you xoxo

Kmarie Audrey said...

Rae: Thanks Rae- I always appreciate your thoughtful words. Talk Soon.
Nyssa: I am glad you get it:) I thought you would...ack tests are awful. I am glad that I did do the bloodtests because my iron is dangerously low...luckily that is fixable (sort of) enough to get me back to a relative normal... Allergies suck... it is exhausting! I hope you can find places that do not trigger...thanks:) with love

S said...

Kmarie, I am with you and I can understand every emotions of yours and what you are going through.
This post could have been written by me....when the going gets tough and we pass through difficult times, it feels that nothing (that we do) will work out ...we lose hope and faith...I understand the dark closet...for me , it is my room...I have been working on these issues as well...
Right now, I am going through a similar phase-both physically and mentally. Doctors have give more tests and i have cleared them. But some new medical issues have come up. I am trying to overcome those. This month I have been in and out of Doctor's chambers and diagnostic centers. I am not comfortable with my body /health and the constant visits to the doctors have taken a toll on my mental health as well. I mask my feelings ( just like you ) around those who do not understand.
We have to keep the faith and somehow, someday I believe that we will be able to dream and do the things that gives us happiness and comfort....Actually, life is more like a journey of ups and downs ...and I am happy to know that your hubby and children are there for you in these times...for me, it is my hubby and parents...
take care,
S

Kmarie Audrey said...

I am sorry that you have medical diagnostic tests...seriously bring down the quality of life. I am thankful for some of them but I really do believe the rest do not always help or in fact make issues worse or the mental quality of life.
Yes it is a journey of ups and downs. I am glad it is your hubby and parents:)
Hope the move is going well.

Angel The Alien said...

I just found this blog, and I can really relate! I have Aspergers and ADHD, plus I go through depression and anxiety, and I am also anemic. My anemia is pretty much under control though with iron pills... but there have been times when I stopped taking pills, and started noticing those symptoms... about a year ago I was convinced that I had heart disease and was going to die soon because of being so light-headed, tired, heavy-chested, heart palpatations, etc. Then I suddenly remembered, "Oh yeah! I'm anemic! I need to get back on my iron!"

Kmarie Audrey said...

Hello Angel!
Glad you found me:) Anemia is not fun sometimes! I am constantly anemic but every 7 years or so I get ridiculously low and my ferratin does not rejuvenate properly...They never can tell me why...so I guess its just the way I am ( and heavier cycles) It does seriously feel like your dying. I keep telling my husband details he needs to know just in case...and then I realize I did this last time too...it sucks.

Ashe Skyler said...

I'm not anemic, but I have my own little demon that likes to sap all my energy and even give me that "air exhaustion / suffocating" irritation. I can sympathize with what the anemics go through. It's not fun. And really annoying.

Although I'm uneasy in closets. They are wonderfully cozy, dark, and quiet. But I'm always afraid there will be a brown recluse or something in there with me. Which is funny, I never grew up with bitey spiders. I grew up with scorpions. Closets are great places for naps! Which is kind of how I view our time-out/I'm-overwhelmed places. It's like a nap for us to re-energize and get back to doing our thing. =)

Supposedly, I've got enough points to count as depressed in quite a few different quizzes, but I have trouble finding it a bad thing in my case. It's relaxing, in its own twisted way. Like an emotional closet I can recess in to and recharge. I can get out a lot of pent up negativity. Might feel bad going in, be absolutely miserable during a depressive spell, but I'll be so much better off after it has run its course.

Kmarie Audrey said...

Demons suck!:)
Lol...well I never really thought of spiders before you mentioned it! Ha! They are not really on my radar much...too funny. Wow scorpions! That def would be on my radar! We don't have any poisonous bugs up in our crazy climate much...
I get that depression is like an emotional climate...I think that is normal for Autistics to a degree! Im glad I can relate with other Aspies!

FlutistPride said...

I think I have a very mild form of anemia, but it sucks the energy out of me. One could mistake me for phlegmatic if I forget to take a vitamin, but I am a choleric-sanguine fireball! I also have this weird feeling that I don't want to eat even when I'm hungry. Do you ever get that? I suppose anhedonia could be to blame. Anhedonia is not a normal part of my temperamental pattern. Normally, I am ecstatic about things I like (such as playing my flute or my upcoming birthday).

Kmarie A. said...

Do you feel that way all the time or just at certain points? not wanting to eat when hungry? That can be a sign of various issues - some psychological, some emotional and some physical. It would depend on what other symptoms you have with it and how often. I had that all the time before I went off of gluten and started eating differently and now I get very hungry when I need to be but still don't eat a ton...for me it comes down to sensory things and the feeling of never being hungry was because gluten made me sick ( celiac) so It really would depend.
When I was super anemic last spring I could barely eat because I did not have the energy...but now I am getting my iron up...my ferratin not so much but at least I don't feel like I am dying anymore an it is easier to do things. Still out of breath when I climb the stairs though!:)
Glad you enjoy playing your flute and I wish you a very happy birthday!:)