It was one of those rainy nights in which the fireplace flickered across the carpet. Bellies were satisfied with delicious morsels of fish seasoned with avocado oil, dill and lemon, and mashed potatoes perfected to creamy swirls of satisfaction. The window was washed with droplets of sacred water. Instead of creating rainbows of sunlight, the light catchers dripping from the window casings reflected murky gray. Outside the panes, the Gothic arch opening in the front wall framed the muted green tones of the outer world. Gnarled branches grew over the frame and two trees stood guard on either side of the arch, roots twisted and deep.
It was in this environment that I found myself thinking upon time and other such importances, and I realized, with urgency, that I needed to paint my door a deep purple...I have been begging for a purpley red door since I realized black would be too hot on our south facing home, but I finally convinced my husband that it was meant to be. And then I laughed when I looked up the significance of a purple door (I believe that my best life is lived when I see the connections and significance in all things) and found out that a purple door means "a Witch lives here." We will still be painting our entrance a burgundy purple.
On a night that sings softly of Autumn I feel the magic of being alive. Sometimes living is bone weary exhausting, but on soft nights with spilled lamplight, nurturing food and beautiful surroundings it would seem that the abundance of simply breathing can sometimes beget the simplest magic. Sometimes being alive is at it's most profound in the mellow beauty of meetings. Where nature and materially crafted collide in a fusion of elegant, inspirational beauty. The moment was too tender not to share.
Our home is named Anam Cara, taken from one of our favourite books in our twenties. "You are joined in an ancient and eternal union with humanity that cuts across all barriers of time, convention, philosophy and definition. When you are blessed with Anam Cara, the Irish believe, you have arrived at that most sacred place: home."- John O Donnohue. It is to awaken the awareness of your own light nature and accept this in oneself, in order to appreciate the beauty in others.
Anam Cara reflected warmth and healing contrasted by the drizzle of sorrowful rains. This home seems to be at it's most magical when the outer world is cold, dark or drained of colour. Inside the door, the warm hues of purples, oranges, browns, reds, greens, and yellows meld together in an infusion of inspiration and comfort. It's a haven for the travel weary...usually those souls who may not go anywhere but need respite from the bitter truths of survival.
As the skies darkened, the crystals in the window began to sparkle subtly. They were slightly swaying reflections of the light around the room contrasting against the black of night. The Gothic arch was almost encased in black if it wasn't for the solar lights nestling on it's corners. The teary rain turned into a light torrent that was pounding into puddles and splashes could be heard on the sidewalk outside. The ancient dance of hearth and environment engaging provided a soothing backdrop to pondering and musings.
My soul sang murmured agreements. Soft whispered sighs of, "Yes this is what it is, in the best of moments, to be alive." My children were laughing in their rooms, the sounds echoing off the walls and carrying to my sitting place, kissing me with muffled joy. My husband was comfortably sprawled over the couch across from me, reading his book, his mind traversing through time, lost in the celtic world of North Umbria circa 890. I could feel the magic of transportation humming from his aura. Looking up from my screen, my gaze raked his stocky form, happy that a man so strong and able was nestled next to me, restoring himself for the next day's labour. Back to my computer, the modernity comfortably mixed with the ancient. It wasn't jarring. It was simple. Instead of parchment and ink, I was drumming my fingers on a lighted machine, but the same feelings of old were coming out into the world through a medium.
Sometimes, in the hustle of life, I forget that savouring and taking notice of what I have, opening myself up to the ordinary pleasures of BEING, are within my grasp most of the time. Time is the most treasured possession I have and too often I forget to pay attention to what is within my time frame. To appreciate and take stock of all that is abundant, good and right. Sometimes, Anam Cara has a way of bringing this home to my soul more than any other place can. Rightfully so. And sometimes I need certain conditions of nature to force my recognition. My husband and I are creatures of Autumn. We become our best selves in the season of decay. I am not sure why this is, but I embrace the tastes of Autumn days during the year that allude to the Season.
Occasionally, I forget, even though my personality is a contrasting paradox, that the world can be at it's most beautiful in contrasting dualities. I forget to take notice and accept the polarities. The comforting contrasts can be jarring or they can be welcoming. The difference or range of which one experiences jarring or welcoming, is in a feeling of safety to explore the differences, the beauty to encompass, and the ability to change perspective.
The soft light of my screen is enhanced by the golden glow of a lamp casting it's warmth on our coffee machine in the next room. I can almost smell the brewed aroma of morning. The gentle clickety clack of my fast fingers across the keyboard are off rhythm to the rain swishing across the roof and trickling down the panes of glass beside me. Both are beauty. Both can bring life and both can destroy life if taken to their extremes.
Now, I shall go outside into the deluge and be in wonder. Restored and renewed, drenched in rain water, witnessing the growth of the earth and the shimmer of trees. May your ordinary magic be experienced tonight or tomorrow or maybe in one of your Todays.
Song Choice: After I wrote this the lyrics of Across the Universe popped into my mind, "Words are flowing out like endless rain into a paper cup
They slither while they pass, they slip away across the universe Pools of sorrow waves of joy are drifting through my opened mind Possessing and caressing me"- The Beatles
Introduction:
*This is a follow up post to "The Summer is My Winter Season" which I wrote about HERE last summer. I ended that post with; "I love the wild roses and peonies blooming in summer. I adore the sunrises and sunsets. Thoughts of cold ice tea and home churned ice cream. I love hearing fires crackle in neighbouring yards or hear birds twittering in the trees.The vibrant colours, ever green landscapes and diverse skies feed my inspirational artist eyes. I do love summer for many reasons, but it's still my soul winter. I don't hate it. It's not my least favourite season but it's the one I struggle with the most. I love all seasons for what they are and each one has some downsides amongst the positive. The whole year visually is a delight to anyone who enjoys nature and being alive. Of course I regard summer with that same respect and some of my best moments have been created during the summer, but that does not lessen the effect on my mind...." Or my body. This post will be focusing on how Summer effects the body for the Chronically Ill and also how that in turn, affects the mind.*
The Challenges of Summertime:
Summer. That time of the year when everyone seems to be outside in the sun all day, laughing on beaches, trimming outdoor hedges, sipping on sugary drinks or licking dripping heaps of ice cream, exploring and adventuring. And those who suffer from Chronic Conditions (*a disease that lasts longer than three months and often has long lasting effects and day to day fluctuations in symptoms), have to fight the feeling that they are less than human for not participating in a 'normalized' way. Often these diseases are "invisible" in the sense that those who suffer from them can look normal. They are also often cyclical. There are flare weeks or times when a sufferer can barely get out of bed, but then there are moments when the body almost seems "normal" and is able to carry on day to day existence without too many issues. Many of these conditions can cause an increase in symptoms with time change, travel, new foods, weather, and time limits on sun exposure for varied reasons, which makes summer tricky. Add to the list, limited energy or mobility, and it is easy to see why Summer can be the biggest challenge of the year for someone who is sick.
A Sense of Loss:
Summer is the season I struggle with a sense of loss. I am typically not a lonely person. I enjoy solitude and hermitage. However, Summer can bring out my inner struggle with feeling left behind. What I also dislike about Summer, is that most of the year I can get away with not seeing people or not attending events, but in the Summer I feel it is more noticeable. I feel judged for being the person who fails to show up. This happens especially with extended family. I can see them in the winter, and everyone is tired or wishes to watch a movie while being sprawled on the couch. But in the summer there is this expectation to have energy at family gatherings and meals. To DO something, swim, stay longer, extend the time into a picnic, explore outdoors, or go on a spontaneous trip. And I end up being the person who not only declines, but puts a cork in everyone else's plans of inclusion. Summer is when I feel most misunderstood. I don't feel heard.
The Pressure to Stay:
People will say phrases like, "A day at the beach reading by the water will be relaxing." or "A summer BBQ will be fun! You only have to stay for an hour..." Then when I try to leave, the looks and questions and people pressuring me to stay or for my family to stay while I 'go have a break at home', makes it even worse. I don't want to be away from my family. I want to build summer memories with them too. I would rather do something that I can handle, with them present, because my time with my children and husband are precious to me. I don't wish to be left behind or away from them so I will try to show up when I can or present a different plan to them that may not include the others who do not understand or accommodate.
The food at a BBQ could trigger a flare up and depending on the day, I may have already used up all my energy on a thing called ' getting up.' A day at the beach for someone with Lupus could be deadly. For someone like me, with Lyme's, it will mean fun in the sun for awhile, but then my hidden bacteria enjoy the heat and come out to play from their hidden homes deep in my organs. Thus, for weeks after a full day in the sun, I can be in pain or the Flu.
YET, I remember days in the sun. I WISH I could go enjoy them without suffering. Sometimes I have to bite back envy when I see a family picnicking in the summer heat and laughing over a BBQ with friends. I remember what it was like. I enjoy aspects of life in that regard too even if I can not sustain the energy anymore. Sometimes, I will choose to suffer later for the sake of NOW. Sometimes, on the rare occasion, I CAN suddenly partake in these events without lasting consequences, so it can also be confusing for people to see the pictures of me doing the same event I declined of theirs on a good health day. There is a real sense of isolation in the summer I do not experience at any other time.
The Chronic Guilt that Comes With Chronic Illness:
I also struggle with epic levels of guilt. I have to fight phrases like:
- I SHOULD have been able to take my kids out for more than an hour on such a beautiful day.
- I SHOULD be able to swim for a little while anyway.
- I am ALWAYS the one who has to say No.
- I RUIN every one's plans.
- I seemed like SUCH a crank but it hurt to smile.
- I am SO BORING. I couldn't laugh or crack jokes like everyone else because I felt that migraine of exhaustion and through the brain fog I could barely hear what anyone was saying. My memory failed and I could not think of anything to say and it was hard enough to remember who I am let alone engage in stimulating conversation. I am an interesting person. Why could I not have conveyed that?
- I can be such a full blown bitch. I just don't have the energy to pretend at nice anymore or the filter for my mouth. Why couldn't I have refrained from allowing my inner bitchiness to come out?
- I enjoyed that person but they had not idea because I could not communicate that feeling. My brain froze up and my communication skills were impaired due to the pain in my body. I WISH I could have been better company.
Those statements come to me in varied ways, almost every night of summer. I fight the guilt from the disappointment I hear from a fellow family member's voice when I say I can not attend their wedding or funeral or shower or get together.
Flack and Expectations from Other Sufferers:
Even my fellow sufferers of chronic conditions, can make living with chronic illness worse. Because they may not have the same triggers, so they may say damaging phrases like, "Well I can do that and I have ___." Or "You just power through and it's worth it."
Let's not do that to each other.
Some conditions can be a worse diagnosis but have less side effects than a slow going one. We never know what someone is dealing with. We don't know how tired their brain is or how depleted their body is. We don't know if someone is on the brink of hospitalization even if they are standing in front of us smiling and looking normal like usual. Fellow sufferers can be tough on each other, if they do not think outside their own boxes, to realize that every trigger is different. For instance, a bit of sun will make me feel warm and comforted. Due to extremely low Ferritin and iron levels, my limbs are always ice. The feeling of being warm can be a huge relief. But for my aunt with Lupus, I have to remind myself NOT to ask her to sit on the deck with me, for even a short time, in the sun. Little bits of sun are healing for me. I have to remember not to encourage the same sort of healing offhandedly to her.
Accepting Chronic Illness But Still Suffering Depression Side Effects:
The fact is, I have come, mostly to terms with my health. I know I have good and bad days. I also choose to look at my conditions as learning tools to embracing life when I can and relaxing into letting go the rest of the time. Yet, even with my mind healthy approach I struggle with depression. I don't want it all. But sometimes I want a little part of that freedom people with health take for granted. The gutting truth is that we, the chronically ill, ARE missing out on some aspects of life. Little things like being able to randomly eat a new food without paying for it. Or sporadically being able to have the energy to sustain a quick day trip. That is a loss that requires grieving from time to time. When we manage to do something "normalized" we get this insane high and we think, "Maybe I am getting better! Maybe I can do this activity." And so we bravely try another adventure on a good day in the future, or even the exact SAME activity to a devastating result. The previous high enhances the inevitable low moment of 'normalized failure.' Broken Dreams, New Dreams and Altered Expectations: I love Broadway and concerts. I love music and dancing and my soul flies when I can participate in any of my interests this way. But I have had to leave concerts I loved because I was sick or felt like I would fall over from my exhaustion. And when this has happened, I cried and cried. I WANTED to be where I was not. I paid money for the ticket. I invested hopes and dreams into the moment. I probably had to pull out my partner from the event and also ruin their time. Yet, I can't just turn back and say, "Oh I'll make my body trudge through!" My bodily limitations will not allow that. When my body is done with pretending- it stops functioning normally. I can't force my blood cells to grow larger with healthy red oxygen. I can't force the Lyme bacteria to go back into hiding or stop triggering food intolerance's. I can't ask my Celiac to give me a break when it is accidentally glutened. Even if I chose to have my Endo tissue removed from around my organs in a risky surgery, I would STILL feel the phantom effects (or so I have heard from all sufferers I know of the same condition.) I just have to go along with my body which sometimes feels like it is not my own. It feels like I am stuck in a vessel that is not truly all me. It is hijacking me for a terrible ride into pain. Kindness and Forgiveness to Self and Others: Carly Jennings wrote an excellent article on 8 Tips to heal from Autoimmune Disease HERE and I highly recommend the read. But I wanted to highlight two of her points; "Kindness: To yourself first and foremost because this is an incredibly difficult challenge and many people will not understand. You are doing your best everyday. Give yourself credit and be proud of yourself. Also be kind to those who help and support and love you. It will make you feel better too.
Forgiveness: It will take time to forgive those friends/family who leave you and those who judge you. It may take longer even to forgive yourself and your body for failing. To rid yourself of the thick heavy guilt of somehow causing this or for being a burden. I believe long-term (invisible) illness is one of the biggest tests of character one can face. Dealing with the all consuming harsh physical reality alongside judgment and stigma is beyond overwhelming and unfair. Of course you are justifiably angry but after a while you do realize that your energy is better spent elsewhere and you have to begin to let it (and other people) go. Release it all and forgive when you can."
Over the last ten years, due to chronic illness and diagnosis of different brain wiring, I have completely overhauled ALL of my relationships. Differing people have become my support while others have gone to the background of my life, while others have left or I have booted them out, completely. The ones I have the hardest time with are those who I have explained through writing or given chances at understanding, but STILL continually give me a hard time or silently sit on judgment about who I am. Or constantly ask, "Why?" I don't have the energy or desire to explain how I am doing outside of my writing so I will fakely say, "Fine." I find it worse when I am accused of being selfish because they mix up with my limitations due to symptoms and differences with my ethics. I don't have a relationship with a few previous sibling like relationships because of this factor. I have had pressure to conform and I conformed for more than half of my current life. It isn't happening any more. My 'health happy days are too precious to me.
The Comparisons from Family:
There is a woman of my extended family whom is a cherished part of my support. She is an incredible person who has had her bowel removed from Colitis, RA, Kidney Failure, a slow growing rare form of lung cancer AND diabetes. She constantly hosts people in her home, makes us meals at age 70 plus, and travels. She doesn't understand me even though she deeply loves me. I have less of a cocktail of health than her, though my conditions are quite a mouthful too, yet I have less energy than her. I also come from a different cultural mindset and I firmly believe some of her conditions were enhanced from her giving too much. She is often stressed about people. She gets so tired out after company even if she enjoys it and I refuse to live my life that way.
We are also completely opposite personality types. What she sees as love - I see as burdens and vice versa. She remarked recently to my mother, "What is wrong with her? She used to go to everything and now she goes to nothing. It is so hurtful. I am concerned about her and doesn't she care about anyone? That is just what family does. They SHOW up for each other even when in pain. I do it all the time. Why can't she?"
First off, I am an introvert. I already was born with less energy for other people. Add to that being an Aspie, and there will NEVER be a lot of people at a time on my investment list. Especially if they need a lot of attention or support to understand my odd ways. I just can't invest that way. I give a lot but to a very contained group of people, whom I also get from in some way or another, in general. For the first 26 years of my life I gave and gave and gave to anyone who needed me. I was WAY sicker than I am now (believe it or not.) I also was miserable and stressed often.
I will always love her and the rest of my extended family. I show up where I can. Send money often when I can't 'be there' or find creative ways of giving without too much physical effort.
When The Pressure 'TO DO' Bleeds On to My Children:
I also feel this pressure for my children. Members of the extended family will often come to my children with some idea of activities they can get involved in, summer camps...basically everything that was my childhood and I struggled through. Constant event, after constant event and yes, some are amazing opportunities. In my childhood, I had some epic experiences, but they did NOT make me who I am. I enjoyed many of them, but I also suffered and have no desire to repeat that life for my children. Add my chronic illness that has been going through a rougher time lately, and I barely have the energy to make sure my children know they are loved and taken care of some days. Although most of my energy will go to them in schooling and spending time with them...which I love.
They are NOT missing out. We give them many other life moments that I can manage within my own limitations and time frames. We think outside the box. Yet when I say, "NO" to summer camp, my entire extended family takes it upon themselves to gang up on me, "Why not- you have to let go of your kids sometimes." or "It will be healthy for them." or "It's school credits. Why wouldn't you use this opportunity." And for months or years until the event is over and done, I will hear about it occasionally from one of them trying to convince me that the activity is the right thing to do.
Occasionally, I will get justifiably angry at the well meaning interference. Yet, even though we are not always close, I do rely on my extended family for support and in a way we are excellent family to each other. I have had to implement more boundaries over the years and distance, but I generally appreciate the time I have with them. Thus, I have had to learn to let people go and let the anger go...or smile and nod, "Probably not, but thank you for thinking of my child." It's only when they become pushy that I decide to leave the situation or write a text like this later, "Thank you for videoing that summer camp for our daughter as an option. She felt very loved and valued by you by doing that. Now that you have given us that option we will think on it over the upcoming year and let you know if we decide it is something we will do. If it is not, she will still have a valuable and meaningful life. Its a great opportunity - just like many things in life. As a family we have to all be on the same page and some things CAN wait till she is older. While you can encourage her in her dreams and goals , please do not pressure her to see this as her only choice of fun or summer thing to do. We will decide eventually and are thinking upon it but we are in no rush to part with her for 3 weeks. She has only a few years left of being a child in our home and a lifetime of adult opportunities. Anyway, she loved that you thought of her and that means a lot to everyone so thanks."
I know that the opportunities are good. However, it is just as fine to live a normal quiet life without those activities. Our culture has a huge fear of missing out. Chronic illness has taught me that sometimes missing out CAN be painful but, once balanced, there ARE other valuable ways to enjoy life. Even knowing this, and seeing my children thrive and be calmer and more confident versions of their peers even though they do way less, still does not ease the guilt.
You Did NOT Cause Your Condition:
The fact is that the guilt that comes with chronic illness never fully goes away. It comes and goes. But some seasons are longer lasting. I didn't make myself ill. For two of my conditions, (Celiac and Sensory Overload that comes with being Autistic since birth) I was sick most of my life. Endometriosis began in my teenage hood when my heavy periods did not account for the insane pain I had every month. For Chronic Lyme disease and co conditions, the one doctor predicted that I was infected sometime in my childhood and it was triggered by the birth of my children. I still have no idea why Anemia plagues me on and off through out the years to awful degrees of oxygen deprivation. My thyroid nodule probably was produced by everything else. Last year's sleep test showed genetic insomnia- yay, another condition that enhances my inability to show up for life in a way that matters to most people. These conditions trigger each other. I didn't cause this pain so why do I feel the brunt of the responsibility for it? No one wants that kind of attention...especially those of us who have tasted the freedom of a healthy life once upon a time. "I believe long-term (invisible) illness is one of the biggest tests of character one can face. Dealing with the all consuming harsh physical reality alongside judgement and stigma is beyond overwhelming and unfair."- Carly Jennings. Hacks and Tips for Going Out:
I've had to learn to take the teasing with a smile when it comes to the precautions needed for chronic illness. I keep track of my disinfectant as much as my debit card. If I am going out, so is my disinfectant. I wipe down shopping carts and door handles. My children also know that anything they touch has to be wiped off first and their hands are always waiting for a application of sanitizer if we are out on errands in crowded places. Why? Because getting sick with a bacterial infection ON TOP of chronic condition can not only be more enhanced and painful but life threatening. Or it's just pure misery on top of a daily struggle. I know, I had mono for the first part of this Spring and I am still recovering. This means, anyone who is in contact with me, has to also be cautious.
I have to pace myself. I will often get dropped off at the door of an establishment, even if to onlookers, it looks that I am a young, lazy thirty year old. But this conserves my energy for the outing so it is worth it. I make sure I have an escape plan and secondary back up plan for the times we do go out.
I also take pictures on ANY day that I actually get out of the house or look nice. I know it won't last so I want to have some memories tangible for my children as proof that I tried. It also helps me to be grateful for my life to see myself smiling, even if I was tired, because of the gratitude I had for life.
For more tips on summer hacks click HERE and HERE. If you have younger children click HERE for thirty ideas of summer fun while chronically ill. Also, check out the list of helpful links I left below this post.
The Bitter Truth:
I have really been struggling this summer, like each summer before. I valiantly apply perspective. However, on bad days, I have to admit, being chronically ill can be devastating. One of the worst parts for me is feeling nothing but wanting to feel joy. The other day we had a lovely time going out for coffee in the morning with a cherished aunt, followed by my children swimming in the grandparents pool while I laid down and talked to my best friend inside, followed by a trip to the theatre with my sister for the latest Spiderman (which we all loved.) I rarely see my sister and barely hang out with her for long periods. But I could not manage to think of anything to say.
My head was pounding and even though the day was good, I just felt exhausted. It's an effort sometimes to speak. When I am this low in iron I can't finish the bars of a song. I love singing along to songs. It's really hard on me and sucks the joy out when the breath stops and I have to sit quietly to regain some oxygen. Later that night I felt incredible guilt. I felt like the bitch of the family again. I am known as the cold one with dramatic tendencies. The Rachel Berry of the family...dearly loved, fiercely protected, but constantly misunderstood and mocked. My husband often teases that I was born with a star over my head. That though I am hated by many, I always seem to have those ones who would do anything for me, no matter how much of a high maintenance case I am... This is true at times. My kids also say that watching Glee I am most like Santana, I say horrid things that seem very funny even though they are kind of bitchy. My daughter says it's what she loves most about me. It makes me relieved to know that even with my hard hitting comments and sassy tones, I am still loved. I have a sweet side too that has been well cultivated but if I had my filters off, I probably wouldn't be thought of as 'kind.' However, I know how I come across at all given moments and it's tough when I am trying to convey love but don't actually do so. I know when I am perceived as not interested or 'off.' But in those moments, when exhaustion is the culprit, I can't explain and I can't even pretend...which is huge for me, if I can't pretend...
On that outing, I barely talked to my sister. The kids and hubby took over and had a good time, but I felt disenchanted. I loved Spiderman but at the same time I barely laughed though I was smiling inside. It took too much energy to laugh with the others. I wanted to lie down the entire time and this time I wasn't even paranoid about the theatre because I was too tired to care. The next day, after an ok sleep, I suddenly felt the energy to laugh or entertain, but it was too late. I wished I would have been the fun sister...but then again, I only was that girl when my sister was a teen and even then, my INFJ persona lends an aspect of seriousness that doesn't scream fun. But I can still make my loved ones laugh by saying ridiculous things or my off humour, but I didn't that night and I regretted my exhaustion. Then I was mad at my illness for robbing me of simple moments. I was angry that illness forces me continually to reevaluate the meaning of life, the beauty of simplicity, and the bittersweet.
Why must I always think upon these things? Why must I be the one who not only suffers from the condition, but has to manage it, explain it, understand it, and accept it? The bitter truth is because I have to. It's both beauty and pain. If I do not look at the dark and light of it, I will find myself either in immense depression or insane despair. It is what it is. I will be what I am. It's a cycle of acceptance, depression, inner peace and anger. Different days will trigger different phases. Perhaps that is why those who suffer from these conditions are often brave people who understand the meaning of life in an old soul way? But it's NOT glamourous. It's not idealistic though my idealistic self will add aspects of that into the picture when I write... it's real life which means it evolves and adapts and is never linear. It's gritty and unfair. Such is life. Chronic illness seems especially unfair because it is. It's not easy to spot, understand or cure...let alone manage. It effects everything and isn't just about the body but about the spirit and mind. I can have the most positive attitude, eat healthy, exercise, meditate, and do all the things I am supposed to do, but I will STILL have flare ups. I am sick less then I used to be due to strict management and the actions I mentioned above, but sickness side effects still happen. I am still playing host to the bacteria, the small blood cells and low ferritin, the reactive villi, the differently wired prefrontal cortex, the nodule, and the tissues wrapping themselves around my pelvic organs while being sleep deprived. I can't do much about any of that in the long run even if I maintain, manage, and help. That is a bitter pill to swallow. Even tougher is to witness what this ends up taking from me...moments as simple as summer nights...and "summer dreams being ripped at the seams..."
To be honest, the lyrics that pop into my head every morning when I wake up are, "Each morning I get up, I die a little. Can barely stand on my feet. Take a look in the mirror and cry...lord what you doing to me?"- Somebody to Love, Queen. The rest of the song doesn't really apply to my situation but those few bars are incredibly accurate.
Conclusion:
It would be wrong to say I hate summer. But sometimes I do. The post I wrote last year HERE sums it up nicely, "In summary, summer, to me, is a tease or the flamboyant friend who is awesome for short stints and epic for a few fun times, but is not the friend for soul work, regular intervals or deep diving. Maybe for many people, that is the friend of choice, for a fun time. But for a soul like mine? It simply doesn't suit. In that regard, summer is my winter. It gives me sparse return on my investments in some cases, and exponential ones in other big areas. It is what it is. Beauty and brutal to my body and mind. But, at the end of the day, I still find that I regard each moment with gratitude. Each season, though affecting in different ways, brings out a different aspect of being. I love that. Our life, no matter the season, is a mixture of holiday simple life, and necessary work to live. But we enjoy almost all of it. We don't save our energy or time for "Holidays" but create a life that we don't need a vacation from. While we enjoy short spurts into the unknown, any season brings it's own beauty to our table. I suppose this is contextual too due to our living choices, educational choices, philosophies of life, and work choices, but each season brings both respite, creativity, joy, pain, burdens and struggles. We try to live in gratitude for the former while respecting the latter."
*Examples of a Chronic Disease would be any Autoimmune Condition ( Lupus, Lyme, Celiac, M.S., Thyroid ect), Rheumatoid Arthritis, Anemia, Endometriosis, PCOS, Cancers, Dysautonomia, ect.ect.
*While this post can somewhat apply to mental illness I left those out because I have covered my struggle with anxiety and depression in other posts. See side label for more.
*NOTE: As I have mentioned before in posts, personality is ONE aspect of being human and your individual make up. Environment, upbringing, birth, health, trauma, life experience, mental or cognitive differences, genetics, beliefs, gender preferences, country of origin....there are so many aspects that make up YOU. However, I firmly believe finding your accurate personality helps you understand more of yourself and how you work. Take a free test HERE: http://www.16personalities.com - or sign up with an email and take test here http://www.personalityhacker.com/genius-personality-test/ (this site has amazing insight, podcasts and videos.) The key is to answer as you ARE and not as you would want to be like. Meyers Briggs/ Keirsey is what the 16 personalities is based on and has research behind it for a reason. It is more of a descriptor of what you value and how you work out of the world in regards to communication and relationships.*
A phrase in Fun's song, "We are Young" croons, "Tonight we are young, so let's set the world on fire, We can burn brighter, than the sun." I love this song. But each time I hear that line, even after years of it being on my favourites playlist, I am plagued with my duality of thought. On one hand I think, "YES!! Let's burn bright." Then I proceed to picture myself running with those I love, in the perfect outfit, and dancing in the honeyed hue of just before twilight, smiling as the song bursts from all of our mouths in unison. My heart speeds up in anticipation of doing something youthful and memorable. The other part of me wishes to warn everyone I know that burning brighter than the sun does not have to be a magnificent, epic, Hollywood gesture. It can be as simple as a sick person resting into their convalescing season, or a depressed soul managing to brush their teeth, or a parent basking in the delight of their children's milestone...setting the world on fire varies depending on the moment and what one is capable of. My heart slows down with the logical realization that I am already burning bright by being who I am. But then I get caught up in the rest of the song which means singing loudly and feeling the urge to do something spontaneous and loud, while many other thoughts carousel in my mind.
See what happens to my INFJ brain with ONE sentence of song lyrics? I am torn into my two opposing sides, both of which the thoughts play in my brain simultaneously, of rational thinking, and epic romance. I think this is part of the reason why the TV series Glee spoke to me and is still my 'feel good/ go to show' when I am struggling or needing inspiration. Most INFJ's may not feel the same way, because my experience is based on upbringing, but hang in here with me, while I explain why this brings home an example of INFJ thinking.
Glee (mainly Seasons 1-3) brought to life all the music, movies, film, and dance numbers I grew up on and was obsessed with and combined it with hard hitting issues of acceptance, teen pregnancy, bullying, abuse, being a minority, religion, hypocrisy, drugs, suicide, alcohol, sex, commitment, texting and driving, inequality, ableism, and many other worthy themes. Ironically, sometimes it was done in a sacrilegious or sarcastic tone. Sometimes it was harsh with the material and other times incredibly gentle. All mental conditions or minority stances spoken on the show, were given both respect and awareness, yet also dark jokes and mean spirited comments, which equalized many disabilities, differences, and mental illness with both a dark and light approach. All were up for defending and also up to the same treatment. This is what INFJ's often will encompass- a sense of darkness and light, or seriousness in a funny situation or laughter in a serious situation. We have a dark sense of humour and can laugh at seemingly cruel things if presented in a certain harmless way, yet we are compassionately engaged with the innocence of difference and often will be found fighting for the underdogs.
Many INFJ's who did not grow up like I did, may not enjoy Glee. Glee did not always make sense from the week to week standpoint. The writing wasn't fluid from show to show. As I watch the episodes post production, I can appreciate that aspect now, knowing that my expectations have already been disappointed in some cases and exceeded in others. Episodes that used to bother me, I can now enjoy. Some episodes I still skip over entirely but it doesn't really matter in the end. Some episodes I watch for the singing, and others I watch for the overarching theme of the week and skip some songs. It appeals to my hopeless romantic and unrealistic side and indulges it...because often the side I choose to live in the day to day is my logical realistic one. Yet, it also pulls the heart strings with it's episodic lessons or real world issues.
Glee is morally and ethically complex. If it doesn't trigger or bother a person in one episode, it will most likely do so at least once a season. At the same time, viewers who stick with it into later seasons, will also find that this same triggering aspect can happen for comfort and feelings of belonging. This is most likely, the experience most people have being friends with an INFJ. We can be challenging and comforting simultaneously. INFJ's can push the envelope simply by being ourselves. There are comforting segments of Glee, that have made my mostly Glee disliking husband leak a few tears, because he is deeply touched, when I force him to sit and watch. This complex duality is like my INFJ soul. "I'm an odd combination of 'really sweet' and 'don't mess with me.'"
As INFJ's we are capable of making a person feel the most understood, but we can also tear that same person down with our words of insight, if we decide to use them as weapons instead of soothing balms. This contradiction can confuse those around us. We can be mushy and tough all at once. Atticus wrote, "She wore a smile like a loaded gun." This applies to an INFJ woman. We make loyal and life changing friends, to the people we actually allow to come close enough to our inner realms of friendships, but we can also be formidable enemies.
Although it takes a lot to push us to enemy status of which I wrote about HERE. INFJ's are capable of whirling through anger and leaving behind a bit of devastation they deeply regret later. This can especially happen if triggered by ignorance and lack of compassion. Conflict and criticism can drive us to the brink of annoyed crazy. My husband has a habit of being a pot stirrer. He can thrive off of conflict and I have had to tone down my balking reaction to this aspect of his ENFP soul. He has also had to learn to tone down his conflict seeking adventures when I am around. We balance each other out on most days but sometimes our differences ignite sparks. He is also quite the pessimist despite his bubbly persona and he can criticize in reckless abandon when he wishes. I seem serious and sometimes brooding, but surprisingly cling to optimism when it comes to the priorities nearest to my heart and belief in the world. Nothing will make me more irritated than constant criticism or idle gossip (luckily he is NOT an idle gossip.) If I hear more than three criticisms in an hour I will start snapping at him. And then, ironically, if this continues to happen for more than half a day, I will turn my irritation on HIM and criticize him with soulless detail. It never ends well. "INFJ no better friend, no worse enemy."
Luckily, to counter balance this hidden sinister darkness inside, INFJ's have epic levels of self control. This control is usually checked from learning the hard way in our past, that our zinging perceptions, when targeted, can cause us more pain in the end then we bargained for. INFJ's can usually refrain from and harness our capability of ripping the soul out of our victim with our insight filled words. If we do give in to our anger, usually we are not relieved later, and feel awful for losing control and inflicting pain. We are at our best when life is in harmony, including our interactions. We probably relive and reopen the wounds more than most of our victims of temper, for years later, into the late hours of the night...this applies even to the times when the anger was justified. I work on this factor of myself with appropriate boundaries.
Boundaries are deeply needed for INFJ's. Usually we are not very good at them until we practice, practice, practice. We also often have to learn to accept what Brene Brown coined, "Our shame stories." We are hard on ourselves sometimes, even if it seems that INFJ's are full of themselves...We just know ourselves and our gifts. There is the flip side and we have the other side that needs a lot of work. We can seem to have insight into all other people but ourselves at times. It's a character trait that demands growth for the INFJ's. Two books that helped me on this subject were "The Gifts of Imperfection" by Brene Brown and "Necessary Endings" by Henry Cloud Townsend. (Links can be found in my Library.)
Our paradoxes also reach into our intelligence. We love to research, intuitively seek out information, and build up our resources. Yet, the more we become informed, the less we fit in. Already we feel the contradicting frustration of society not understanding us, yet loving that we are unique enough to rarely be understood. We both love and hate our own contradictions. Our lives are enhanced and disenchanted by our own duplicity. Our desire to be well informed is also at odds (like the cartoon expresses below) with our 'desire to remain sane.' We are so contradictory to most of society, that the more we engage in controversial or outside the box thinking, the more alien we feel.
Aldous Huxley wrote," The more powerful and original a mind, the more it will incline to the religion of solitude." This rings true for INFJ's and INTJ's although, I disagree with the quote applying to all of humanity. While it is true that solitude takes out the influences of the dumb, zombie mass mentality factor, there have been MANY brilliant original and powerful minds that have also been Extroverts. To not factor this in, would be pretentious and discriminatory to those who get energy hits off of other people (Extroverts.)
INFJ's tend to LIVE the Matrix. That show never shattered my reality or was mind blowing to me, because I already felt that way about life. I've always rebelled at the nature of normality. I don't understand why Alice went home after Wonderland. Yet, I still have to BE in this world, so some information or thought processes, I have to smother to stay sane, in the place I am supposed to be alive in. I possess a stubborn quality simply because I was born into a life that requires a participation level I think is ridiculous.
Every personality type feels that they are a paradox sometimes, but INFJ's particularly feel like they ARE the living paradox. Even within our Introversion, iNtuitive, Feeling, and Judging explanations, we encompass opposing traits.
Our Introversion is counterbalanced by our sometimes outgoing nature. We are often mistaken for Extroverts even if we are one of the types that craves hermit status the most. We ironically treat people the way we want to be treated and we don't make small talk with them. We are drawn to humanity...when we do not have to engage with the masses. We think about people ALL the time; dissecting, analyzing, observing, understanding and wishing to make the world a better place without being noticed too much. Yet, as soon as we are around a bunch of people, our inner Loki comes out. I can see how Loki, the god of mischief in Norse mythology, became so intent on ruling...his twisted burden of purpose is an example of the rare case of INFJ evil that COULD happen, if we don't use our superpowers for good. I think most INFJ's would agree with the statement to humanity that, "The bright lure of freedom diminishes your life's joy in a mad scramble for power, identity."- Loki. How INFJ's come to terms with this realization pushes us either deeper into the shadows or a step into the brighter light.
Our sensory aspect is so underdeveloped that we can seem highly sensory. The Intuitive letter is always our highest scoring description. We are definitely N's, however, our moderation demands our attention. We have to practice the middle ground. I have always been a person of extremes. I sleep way too much to counter balance my insomniac life. I work faster and harder than my husband at times and then lazily contend with the best couch potato for days of inactivity. I feel everything or nothing. I fall hard or resist to the proverbial death.
We are often logical even though our feeling quotient is high. We empathize deeply but with an analytical approach. It's a cold feeling rationality that other feelers do not fully get. Actually, almost all personality types, other than our fellow INTJ's, don't understand this logical rational quality combined with our feeling status. We layer our coldness with warmth which the thinkers (T's) can not fully relate to either.
Our Judging quality can often come across as a Perceiving type. We have moments of adaptability and spontaneity that some Perceivers can't even understand. My husband knows I like to plan everything. Truthfully, even my spontaneity is planned, in the sense that I have thought the whole spontaneous event quickly through with it's benefits and consequences, and I am ready to quickly switch gears. I can procrastinate longer than my ENFP husband, when I get in the mood, which is saying a lot.
No wonder people get confused by INFJ's. INFP's feel we are too contradictory or fluctuating based on context, which often will conflict with their sense of authenticity. Yet, out of all the types, they often relate to us the most. INTJ's get our future orientated thinking and intuitive perspectives, but our feeling aspect throws them for a loop at times or seems wishy washy... ENFJ's our are sister types but are way kinder than us. ENFJ's have our backs. We connect with ENFJ's on our planning J features and also our harmony co pilot which we both fiercely protect. Both ENFJ and INFJ types get annoyed by conflict. ENFP's are often our better halves. They bring out our balance and we bring out theirs. Truthfully, any personality type can get along with another or understand to a point, but these types tend to get an INFJ more within these aspects. Unfortunately, INFJ's also tend to notice what people don't want noticed. We notice the inner unspoken details, the hypocrisy, and the lies.
Our contradictions also bleed into how others perceive us. INFJ's can seem like an open book full of information, and private details given with careless abandon. Certain personality types do not even speak about topics in such depth in one lifetime, that we do in one week. That is just the tip of the ice burg of thought for an INFJ. It's both a curse and a gift. Our minds are constantly swirling with information. We are continually changing and dedicated to personal growth. Which means it is rare that information yesterday is completely relevant for our tomorrows. We have layers of intimacy and layers of privacy that most do not understand. INFJ's implement weird rules for sharing. We are picky about which platforms we share on and which we completely ignore. It is different for each INFJ although, often we are attracted to similar platforms. Most INFJ's love blogging and pinning personality pins on Pinterest. The same rules we apply on social forums can apply to people. We share certain aspects of ourselves with certain types. Who we are depends heavily on context. People think they know us well from reading or witnessing a passionate speech, hearing our whispered confession in consolatory moments, or because of the rate and depth of information we share, but most people do not truly know or understand our inner workings. Even when we give them the key.
Craig Thompson wrote, "You have so many layers, that you can peel away a few and everyone is so shocked or impressed that you are baring your soul, while to you it's nothing, because you know you've got at least twenty more layers to go." My husband can still be surprised by my actions or nuances of being, even though I give him the running monologue on my inner workings daily. My best friend and I STILL have interesting and engaging conversations about new thoughts, patterns or insights after thirteen years of speaking an average of five hours a week on the phone. Many people in the past assumed they knew me because I handed them little bits of information to understand, at a small capacity or because I felt I owed them at least some sort of explanation. The fact is, INFJ's understand contradictions so well, that we can change our minds in an instant. What once applied in one circumstance, does not apply to us in another. Many people see this as uncommitted, selfish, or inauthentic, but we are extremely authentic individuals dedicated to the selfless act of context within a committed moment.
We COULD win arguments, and we know this to the depth of our core, but we know that the complexity in which our arguments hold up our not worth the time of our opponents. They would have to know all the research, thought and perspectives we have spent decades thinking upon and honing in on to understand, thus we usually stay quiet, smile and nod, or just utter, "agree to disagree" or "Oh that could make sense" with a polite tone. To our friends, we will give a little bit more, but still we do not go into the wealthy amounts of information because we do not wish to waste their time with thoughts that are not theirs to engage with, in the first place...we can open doors but we do not wish to start new worlds for people. Their job is to walk through the door and create their own worlds.
We can also look very incapable. Our sensory aspect is often so underdeveloped that we can become mute, silly phrased individuals in a sensory environment. Our superpowers go undercover and we are left with all of our incapabilities, to which there are many, at the same intense degree of our gifts. Just like our gifts can seem larger than life, our weaknesses also are.
INFJ's are also intensely sexual, but based on depth of connection, because of our sensory overload factor. For once sensory overload is used for good in intimate circumstances. We like physical affection but on our terms. INFJ's can seem touchy but we dislike casual hugs or touch. The same way we dislike chit chat. It feels cheap to us, even if we understand that to other personalities it is highly valuable. We engage for the sake of others we care about, but in general we are a walking contradiction when it comes to intimacy and the ground rules apply, once again, based on circumstance. For instance, I adore hugs from my children and snuggles, but if they approach me in an in depth/ thought moment I may lightly push them away.
INFJ's are constantly torn. We wouldn't have it any other way but sometimes this brings us more pain in life. Like the meme expresses below;
"The INFJ thought process. Ni: I want to find the one true answer....Fe....in a way that maintains general harmony... Ti: without swaying too much from what feels logical... Se: while trying not to completely miss what is going on right now."
Yup.
"INFJ If I am silent, it's because there's thunder inside me. Or I'm just chilling, It depends. May the odds be ever in your favour." As Meredith Brooks sings, "I'm a little bit of everything all rolled into one..." and "I hate the world today...I'm your hell, I'm your dream. I'm nothing in between...you know you wouldn't want it any other way... Just when you think, You've got me, figured out, the seasons already changing...Tomorrow I may change and today won't mean a thing..." But for the record, today, while it is happening, matters to us. We feel the moment even if we are distracted by our ever intrusive thoughts. We may be future orientated, but we also strive to be in the moment, when we can, embracing life. Another paradox.
Song choice: I love this version of Girls Just Wanna Have Fun on Glee because the way it is done is kind of like an INFJ soul...contradictions between lyrics and music yet aptly accurate:
My daughter also said I had to add this song because it reminds her of me. LOL.:
and because I referenced " We are Young" in the first part of the post...I prefer this version over Fun's actually, which is rare for me to prefer the copy over original...
*I actually have a pain journey of photos. I take them either after a bad attack, sometimes during or at the beginning. It helps me keep track plus it also reminds me of how far I have travelled in this journey. This post will share some from a few of the key moments of the last couple years of my pain cycles. This is for my fellow sufferers. You are BRAVE. You know your body. You are strong. Rest, be, advocate, heal and allow... I have not written about Celiac specifically because of all the flack I receive. Plus, "REALLY? YOU HAVE ANOTHER CONDITION!" Isn't high on my list of things I want to hear. However, I am constantly googling other's experiences, and the personal stories are what I treasure most, so here is a brief version of mine. Also, just because I also have Autism or know whom I am in other components does not rule out that I am a multi layer person with a host of differences and similarities in the human condition or can't have other "labels." Besides, labels are actual a way to explain, understand, grow and learn to enhance and manifest life.*
For the first time in my life, I ate Pierogis and they did not make me writhe in pain hours later or feel like my gull bladder was on fire. Because they were made with rice flour and guar gum. The Pierogis were gluten free. Two dirty words that are judged and often spoken with a sarcastic tone...."gluten free..."
Later, I told my husband, "I feel guilt about feeling so great on these items that are supposed to be worse for me than gluten. I have read all the articles on both sides. I know the fillers or gluten free substitutes can have more crap than a 'normal' Pierogi. However, I also know that we are smart about how we eat and make sure that our exposure to these things are minimal and we counter balance with vitamins, whole foods and healthy treats. But sometimes it is just nice to be able to eat a pierogi, or a store bought quick snack, or a gluten free pizza or a gluten free pancake and NOT feel sick after."
My husband replied back with his usual practicality, "It's just a different poison. Poisons are different for everybody. Define poison."
"A substance that can cause death or illness in a living person or animal...or plant or..."
"Exactly. Gluten is your poison. Thus, you eating the rice flour or Xantham gum or Guar gum occasionally and NOT suffering is a big deal. For those who can actually eat gluten without getting sick or having an intolerance or being Celiac- great for them! They may have other poisons or multiple ways their body gets sick or slowly dies. You are lucky you found out yours. So enjoy the food that doesn't make you sick even if the research says it might. Everything can be poison. Every food will have downsides and research to back it up...Some more than others. Pick what is right for you. You are the one who tells me this research- so actually apply it to yourself."
Caption: Photo by my son because he thought I was adorable squeezing his stuffy when I was in a painful attack.
My mother doesn't wish to believe I have Celiac. Let me state that generally my mother is very supportive and she is entitled to her own opinion. I know what it is like to live with that doubt, from not only strangers, but from my original, organic family. My husband believes that it would mean she would FEEL like a failure on her part to not have picked up on it, or that she wasn't in tune enough. But she wasn't a failure and it was me that wasn't in tune. I let it slide on most days and go silent...but now I KNOW. Part of the reason she doesn't believe is because I did not get the confirmation Gastroscopy. Some prefer solid "proof" which is legitimate but also kind of funny because if one actually read the research they would find that even a Gastroscopy can miss Celiac if the biopsy is taken from unaffected Villi...which CAN happen more than one thinks. What is more of an indicator of Celiac is if a person is so sick, goes off of gluten and becomes better, takes gluten and is very sick again, and so on. My mother was quite in tune with most of my needs and always took excellent care of me when I was sick. She was always very nurturing and my children STILL ask and prefer her when they are ill. I am not as conscientious or even that great at hands on care. She is. I will be forever grateful.
Caption: The last time I was in the hospital for "an attack."
I will NEVER eat gluten again on purpose. Even if I miss the occasional glutened treat. It is not even tempting for me because the pain it caused is still fresh in my mind. I also refused to do the Gastroscopy for multiple reasons, but the main reason was that I would have to eat gluten for three months leading up to it for accurate results (because the gut can heal and not be as apparent if this step is not taken.) I had already been off gluten for half a year before the Gastroscopy appointment and I was NOT willing to go back to being hooked up to an IV experimenting with pain meds for the severe gut pain that had me in a fetal position for hours. I also wasn't willing to purposefully put myself in a position where I had a rash for days, abdominal bloating and pain, exhaustion, extreme constipation, head pain and other symptoms that eased up a few weeks off of gluten. Plus, my doctor was also Celiac and knew the symptoms and said I was a pretty clear case. Especially since my symptoms went from regular IV drips to needing help only a few times a year when I seemed to accidentally be glutened again.
Caption: The photos below are a gut related rash that develops every time I eat the triggering food. Gluten is one but I think there may be another not yet discovered. They are not zits as a specialist ruled that option out plus they will suddenly arrive and I feel them become. They start out as massive itchy boils and turn into zingy bits of burning pain...then after an hour or sometimes a few days they disappear. They cover my torso, back, sometimes neck and face, arms and sometimes legs. Then they go away once I am fully recovered.
My mother argues that we would have known when I was a child as it is a lifelong condition. Actually, Celiac Disease can develop at ANY age- click HERE for more. It can even be provoked by a virus into active duty. Celiac can also be triggered, because like any Autoimmune disease, different times of life can cause it to be apparent. CLICK HERE. This article HERE also debunks common myths of Celiac.
I think people also doubt Celiacs because they tend to have other conditions. This is also common. Iron deficiency, mineral malabsorption issues, and many other factors that come with this can also overlap with other conditions. It's not like life says, "Oh you already have a disease! You can't have two more!" or "You have Anemia and Lyme? Well Celiac is one condition too many...we will just skip over your body and find another host for this disease." In fact, if one has an Autoimmune Disease it is very likely for the body to host another condition like Chronic Fatigue, Fibromyalgia, Arthritis, Thyroid Issues, Anemia, Lyme Disease...the list goes on. The body can become a host to these because the wiring is 'off' or one is the root cause while the others are co conditions...or one develops later because of damage caused ect.
Caption: Three days after an episode and I can barely sit on my deck and hold myself up.
I don't blame my mother for missing the signs or not believing. I respect her own opinion, but when it comes to my body, I know what is right for me. I read the latest issue of Allergy magazine. I didn't even know there was a magazine dedicated to Allergies, but I saw it at the Drugstore and the main title had to do with Celiac and Eating Disorders so I bought it. The entire article felt like the story of my life.
Caption: I thought it was amusing there was an ALLERGIC living magazine...and I was surprised at how legitimate most of the articles were...It was a fun, fascinating read.
As a child I was very picky about what I ate. Because it felt like everything made me sick. I was constantly feeling yucky, had more stomach flu's than anyone I know. My best friend didn't throw up until she was a teen. That shocked me. I didn't know it was possible to barely throw up or get sick during a lifetime. I felt awful 80 percent of the time. I was always hurting or sore in my gut. I was prone to continual constipation. I was taking laxatives and these little tiny round stool softeners before I was ten. I hated that stuff.
I still have a tough relationship with food. I am always scared I will either react or that I will get sick. I rarely eat out or trust anyone besides my husband to cook for me. When I do actually eat someones food and ask for it again- it is a HUGE step forward. I have so many allergies and intolerance's it could take up paragraphs. It is ridiculous what I can't absorb and I feel like my list of what I CAN eat is getting smaller and smaller. (I am seeing a specialist who has her MD but is also a Naturopath about this in the fall with multiple appointments and more detailed bloodwork.)
Caption: Rash on my face after an episode and needing a few days to recover.
As I read the article pictured above, I realized that while I have never struggled with Anorexia (in fact I tend to have at least 15 pounds I can never lose) I DO have the kind of eating disorder they were speaking about. The type that is AFRAID of food. Afraid of the pain it causes. I know enough to eat healthy ish. I force feed what I can. But I dislike the pain associated with food that has been my general experience. Part of this is due to Autism and textures, but most of it is due to the previous pain I have suffered at the hands of eating the wrong item. I rarely ate and I still struggle with food. I have a love/ hate relationship with every item on my plate. I usually am desperate to eat my husband's meals but eat a few bites and I am done. He says I am the most frustrating person to feed yet he still tries. I adore him for that. The first two years gluten free were full of paranoia that I would suffer again.
Thus, when I actually eat something I enjoy, that does not give me gas or pain or a rash or constipation or the runs or any other gut trouble right away or hours later, I do a happy dance. And I will most likely eat that item a lot until my body decides it has had enough and I have a bad experience and it gets crossed off my list. My family can not keep up with what I can and can not eat. It is RARE for me to experience food as a positive experience.
Gluten tops this list. I would get wicked pain every time after I ate pancakes... even though I loved them. I got sick if I smelled toast because of the response I had each time I ate it. Most of my childhood foods were gluten products. We ate a lot of cereals, toasts, baking, pizzas, noodles and carbs because we were poor. I don't blame my parents- it was what it was and at least we ate. But I can not think of any of these items without feeling bloat and sickness. To this day Ichiban noodles mentioned create a visceral response and I have to hold back a gag. Although I loved them as a child because all the children brought them to school. And I was also weirdly addicted sometimes to the very foods that were causing me pain. This can happen because the brain can crave what is actually making one sick. I thought these foods were my favourite. Now that I have gone off of them for years I can't think of them without feeling gross. I still love baking but the gluten/ nut free baking rarely causes me any pain. It's not as pleasant of a texture for the most part, I miss that aspect of gluten products, but I'm willing to forgo that pleasure if it means less symptoms.
It is basically impossible to avoid all gluten. I know when I have accidentally been glutened because of the same symptoms that always present themselves. It usually takes me two full weeks to recover in my gut. I often think I have the flu, but when I don't throw up, I realize what has happened. Gluten can be hiding in spices, condiments or hair products. I am not extremely vigilant with care products and I know that something is still triggering my condition at least every few months.
Caption: The day after being glutened.
When someone has been food poisoned they generally never want to go back to the restaurant that was the culprit or eat the same food again for a LONG time. I was slowly poisoned for years. Once I had the self control to actually DO something about it, I never went back. My final straw was the fourth time in a few months, I was hooked up to an IV in extreme pain and none of the meds were working. All the other tests came back negative and I did not have the flu virus or bacterial infection or even food poisoning in the traditional sense. My doctor came to see me and said, "I think you need to do an elimination diet focusing especially on no sugars and no gluten." That experience was SO bad...I even threw up a few times...that I went home the next day and gave away or threw out every item that had gluten or sugar in them. We had just grocery shopped and about 900 dollars in products was given away but I didn't care. I was THAT determined. I knew if I didn't go cold turkey I would never do it. It took me years to get to this desperate point. My husband witnessed my pain and he was also having other issues, like the runs for months, and the doctor thought it would be good for him too, because his test results were also fine for bugs or worms or viruses. We decided our whole family would make the change. Two weeks later his symptoms disappeared and I was in way less pain. Three months later I was back in the hospital for another episode, and two years later I had three more hospital trips in total for the same issue...but that was less than the average every three months I was experiencing before. I got depressed about this fact but then read it takes someone with large Villi damage up to two years to even BEGIN to heal.
It has been four years now without gluten or processed sugar. I will NEVER go back. This was the first year I have never had to be hooked up to an IV drip with pain meds. I have been to the hospital for other reactions, conditions like Mono and normal life stuff. Just because I have Autoimmune Diseases, does not mean I will not also experience viruses or the occasional bacterial infection. But I have not actually had any sort of stomach flu for over two years. If I get a bug it is light or usually a form of gluten contamination or eating the wrong food. But it's not to the extremes it was before.
Let's say my mother was right and I don't have Celiac. Which isn't the case, but for speculation sake, let's say this was true. I would STILL not go back to gluten. Donuts, pizza, pasta, pancakes...they have all lost their appeal. I can occasionally enjoy a gluten free substitute of these...and sometimes I think the substitute is better than the gluten version. For instance, most baking done my way I prefer gluten free. But part of the reason probably is that I do not feel gross immediately after. The longer I have gone not eating these items, the less tempted I am. I can see adds that make people salivate for a donut and I feel nothing. I can smell the baking of bread and savour the smell, I will even go up and sniff it, but usually that sniff is enough for me. In fact, often I won't feel that great after and all my desire dissolves for the item after my sniff. The same happens to me for gluten baking or cinnamon buns ect. I think my brain recalls all the times bread made me sick even if I loved it. My only weakness is pizza. Sometimes I wish I could have a really beautifully textured pizza. Gluten free is ok but it's NOT the same. The closest I have come to a delightful pizza experience was the Rocky Mountain Flat bread Company's Gluten Free version.
Caption: One of many tests to figure out what is wrong...
Gluten is a beautiful option if one can tolerate it. Especially if it is not the refined flour but Heritage flour or Sourdough bread. These options feed the healthy bacteria of the body and if it's tolerated, make a great addition to a well rounded diet. I am not painting gluten as the devil for everyone. But forgoing gluten breathed LIFE into our family. We have less behavioural issues, we have more health, and we have less pain. We had to recognize what was OUR poison specifically. When my children are older they can try gluten and see what happens, but for now it is easier and has made such a difference in them, that we do not allow it. Maybe they are not or will not be Celiac? Maybe this diet has given them enough healthy bacteria that they will be able to tolerate a lot more foods better than I can? Maybe they will LOVE their glutenous foods. I ask that they never go back to refined sugar or sugar substitutes and that they stick with honey, stevia, or coconut sugar for the occasional treat, but I am fine with them experimenting out of the house with gluten. But not now. I need them to be on the same page and I have seen the difference in their lives and I am unwilling to budge on that. I will be more lenient occasionally with what they have and watch for symptoms. I am easier on gluten than I am on sugar or nuts for them, but I NEED to be careful for myself. My husband will occasionally 'cheat.' I think he has an intolerance but is not Celiac. I can always tell because he will stink up the room for an entire night when he does cheat, so generally I ask him not to. Plus, he gets immediately cranky and more sensitive and is prone to headaches. If he is going to eat gluten, he has to partake away from me and not in our house.
Caption: Not even able to turn the computer on after all...too tired to do anything but snap a picture and lay back down...
I am Celiac. I know this with every fibre of my being. Occasionally I doubt, and wonder if my gut healed in another five years or so, if I could eat the occasional Heritage or Sourdough option. I would love to round out my diet...but I think that is more wishful thinking than actually NOT being Celiac. I don't think Celiac is my root issue but I think it is a crucial part of my health puzzle. The more I read up on Celiac the more convinced I am that it is the right diagnosis. The longer I am off gluten, the better I feel. That matters.
The other day I was out at a restaurant and I dipped a fry in this beef dip and ate it, realizing after that all beef dips use wheat. Five minute later my face suddenly flushed bright red and I heard blood rushing in my ears. I felt funny. I felt the urge to hysterically laugh for a second and my brain felt like it was in a fog. My hands shook a bit too but then after about ten minutes I was good but had crippling anxiety. I realized it was from the fry consumed. Shortly after my stomach started hurting and my nose was running. I looked it up at home because I could not shake my weird symptoms and realized it was all common celiac glutened symptoms. (See the link on the bottom of this post for a more in depth analyzation and explanation.)
Some doctors also cast doubt on my Celiac because of the lack of the scope, but most do not. I also unfortunately agreed to a blood test for Celiac TWO YEARS after I was off of gluten which of course came back negative- if you do not eat gluten for three months leading up to it your body won't show the reactive antibodies....and that result is unfortunately on my chart if anyone cares to look. But my doctor pointed out that it should not have been included in my blood work when I was off gluten for that long and that Celiac is still a legitimate diagnosis for me. Everyone will have their own opinions. Heck, I was told I didn't have Mono, due to my lack of swollen throat, and that the blood test was just a precaution because my daughter had it, and low and behold, it was confirmed. Positive blood work is often not a lie, but negative blood work can often be faulty. The doctors were surprised that what I present did not line up with what WAS. This happens to me a lot. What matters is what I believe, what makes me feel good, and what health steps I take for a better future.
Caption: Depression as a result of feeling restricted.
Your health is in your hands. Drastic measures can sometimes be the very definition to LIFE. Most of us are unwilling to face the fact that we may have a condition we do not wish to have. Or have to forgo food we crave eating or change our lifestyles so we sit on the couch and cry about our lack of energy or constant pain. There is a time to rest or cry about chronic conditions. I have my moments...but health requires change. I may not be considered "healthy" but actually, I am pretty healthy for the conditions I have, because of the many changes I have made to lifestyle and diet. A disease is not necessarily a sentence to a horrible life. Sometimes, it actually provides an answer and key to the remaining bit of life being more manageable. Don't doubt what works for a person. It's important to provide other research, answers and options, but if someone is making changes that create a better world for themselves, why do we sarcastically cast doubt or make them feel they are wrong? What is the use in that? If it works for them, celebrate it! If it gives them positive attention, why get jealous? Let them have it. Go out and find your positive attention. If they use it as an excuse not to live their most meaningful life, take that lesson for yourself and at least live YOURS. I may be Celiac, Anemic and a Lymie but I'm not dead yet. I struggle but I also have a lovely little existence for the most part... I don't wish for pity- I want support and understanding from the few I trust. From the rest of the world? Respect or at least to be left alone in my own choices. What is it you want from your health?
Song Choices: Carry On- Fun, "If you're lost and alone or you're sinking like a stone. Carry on! May your past be the sound of your feet beating on the ground. Carry on, carry on...But I like to think I can cheat it all to make up for the times I've been cheated on... We are who we are on our darkest day, when we're miles away, Sun will come and we will find a way..."
Bad Day- Daniel Powter, "Sometimes the system goes on the blink, and the whole thing it turns out
Wrong, You might not make it back and you know that you could be well, oh, that
Strong, And I'm not wrong
So where is the passion when you need it the most?
Oh, you and I, You kick up the leaves and the magic is lost
'Cause you had a bad day
You're taking one down, You sing a sad song just to turn it around, You say you don't know
You tell me don't lie, You work at a smile and you go for a ride, You had a bad day, You see what you like, And how does it feel one more time? You had a bad day."
Some nights- Fun- "Some nights, I stay up cashing in my bad luck. Some nights, I call it a draw, Some nights, I wish that my lips could build a castleSome nights, I wish they'd just fall off...This is it, boys, this is war, what are we waiting for?
Why don't we break the rules already? I was never one to believe the hype save that for the black and white. I try twice as hard and I'm half as liked, but here they come again to jack my style. And that's alright; I found a martyr in my bed tonight. She stops my bones from wondering just who I am, who I am, who I am. Oh, who am I? Hmm Hmm. Well, Some nights, I wish that this all would end...Well...That is it, guys, that is all five minutes in and I'm bored again. Ten years of this, I'm not sure if anybody understands. This one is not for the folks back home, I'm sorry to leave, mom, I had to go. Who the fuck wants to die alone all dried up in the desert sun? My heart is breaking for my sister and the con that she called "love". And then I look into my nephew's eyes...Man, you wouldn't believe the most amazing things that can come from...Some terrible nights..."
