Friday, July 28, 2017

The Summer is my Winter Season PART TWO. Summer for The Chronically Ill. Easing Summer Guilt for the Chronically Ill. Bitter Truths and Acceptance. Tips and Hacks To Summer Survival.

You may have clicked on the label and are looking for this specific post on Lyme. I included a few more posts where I reference it but this is the one I actually talk thoroughly about Lyme Disease:

*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.


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.

At home Activities and online resources for people with Chronic Illnesses: 

9 Summer Survival Tools when You have Chronic Illness:

Two other people's experience with guilt:

How to Overcome Summer Loneliness:

28 Things To Do When you Are Bored and Sick at Home:

Another post about Struggling with Chronic Illness:

What to Do if You have A Fear of Missing Out:

Song Choice: Cruel Summer ( of course:) Bad Blood- HA HA because I literally have bad blood. I have an odd sense of connection:) and Counting Stars by One Republic as well as Fight Song by Rachel Platten.

THIS is also a good list of songs for those with Chronic Illness.


Anonymous said...

This was helpful and encouraging. I often feel the guilt and have to hash out all the many issues that I fight within being chronically I'll. I also found the links good. - RA

S said...

Dear friend, I think this post is one of your best post. It is a very important post because all that you have shared here contains profound wisdom, deep feelings and it expresses the chaos and confusions that goes with chronic illness and neurological differences. I wish you had named the post as "chronic illness and neurology/or neurological differences". I think many people google search on these terms and would find this post very helpful.
Personally, I could relate to all that you have written here. I have gone through and still I am going through exactly the same phases ( in summer it is more when the already imbalanced body temperature of the chronically ill people gets more affected by the outer temperature) and I find it a daily struggle with so many ups and downs or so many different levels of "down" in a single day. You could not have put your words in a more better perspective than this as you have indeed expressed these emotional /psychological turmoil so well.
There are different personality types and different individuals on this earth and yet, people say , "If I can do it, why can't she ?". Actually, such queries and questions are making us lose the battle with chronic illness more. It is not only about winning the battle or the triumph ( although this may be an important aspect ). It is more about understanding the differences and empathy and asking " how can I help even if I do not understand ?" . I guess human beings are yet to reach such levels of compassion/understanding and chronic illness on this earth is a proof of this. Humans are used to a certain level/kind of compassion and not to another. That there can be "different types/ kinds of illnesses" or different kinds of neurological differences- yet humanity is not ready to grasp or accept it unless it happens to not only to them, but also they want to not seem to understand that "sameness or difference" is not something to be seen and judged but felt . If somebody is suffering from the same mental/physical illness yet one is not able to cope and other is coping better, then instead of understanding the "truth of the matter" or the differences, society urges the so called "less abled person" to rise up to the standard of the "more abled" person in the same situation by overcoming "certain factors" which are itself differently manifested in each one of them. This itself shows that empathy cannot be practiced, not only if it does not affect them personally but also if they cannot "trust" or "feel" what the other person is trying to convey/going through.. This defeats the very purpose or the meaning of empathy /compassion/understanding that humanity so proudly claims to ( or tries to ) achieve in the modern world.

S said...

The guilt aspect is also something that I ponder upon often. That we feel so much ( about guilt and hurting others unintentionally,) and on top of that we have our minds and bodies to manage, it is indeed overwhelming. That is why perhaps, even the smallest moments of joy and sanity ( alone or with others) is so precious to us because that is all we have. Even the smallest of small things like a tiny flower or a cup of bland sugarless tea is so important to us if we can enjoy it while it lasts.
I wanted to add more to my feedback but you have just stolen all the words from me by writing everything exactly like the way I would like to have said or added. Also, thanks for sharing the links, I am going to reading them one by one.

Kmarie A. said...

RA. Thank you. The guilt IS hard. I am glad the links helped.

S: I will add that to my already long title. Ha ha. My titles are my joke. I have never been good at titles and leave multiple ones and do that last.:)
Thank you. It is SO hard. I am so sorry for your own struggle. Yes that is an excellent paragraph that you expanded on the differences of comparing illness and what you said about ableism is SO true. and so unfortunate. Yes to more empathy and to ourselves as well...and the guilt is pretty is overwhelming...yes those moments can be all that one has in moments of suffering... I love your feedback.
I am glad that you enjoyed and found the post good...It was a longer one to write and its why I put it under subheadings because I could not shorten it. I was worried it may not be helpful so I am SO glad it was to you. That makes all the difference. Yes the links are shorter so that helps:)

Ashe said...

Summer is definitely my least favorite season. I don't outright hate it since that's the only season the crickets and frogs come out at night, but during the day it makes me miserable. I've often teased with my mom that I get "seasonal affective disorder" in the summer and really perk up in the winter. Up until the past year or so, I didn't realize the reason I was feeling so much more drained than usual was from sensory input, like the glaring brightness of the sun different from the mostly overcast winter, the extra noise from people in town and the AC running, and other stuff. This summer hasn't been so bad so far since it's been abnormally cloudy and rainy. We still have grass! Usually by now we have brown, spiky, crunchy stuff that hurts to walk on.

Sometimes I forget how ill you are because you look so healthy, vibrant, and full of life in your photographs. Even in the ones taken on your bad days. That last picture at the bottom of the post has to be one of my favorites of you! "Hidden illness" describes it pretty well.

A day out can be relaxing, but there's always the aftermath to deal with. In the past few weeks I've had to deal with two medical emergencies and a funeral. I spent the day with family at my nephew's birthday party at a science center because I really needed the break, but it had me down for a few days after from the long car ride, the bright lights and noise at the center, and then of course the stupid anxiety of worrying I might have gotten too relaxed and said something offensive to somebody. I kind of mentally do the Katniss salute now when somebody wants to brave their exhaustion to go out. "May the odds be ever in your favour."

Kmarie A. said...

Ashe: I do not outright hate it either for so many reasons but yes I agree- tho I do LOVE the sun factor. I live off of sun but luckily we have a lot of that in the winter. OH I would not do well with brown crunchy stuff...

Yes my whole family forgets. Visible illness is hard...even I forget until SLAM- I realize I am sick and its too late...yea well even on most of my bad days I try to at least put on eyeliner just because I have so many bad days I dont want to look totally and completely sick...but maybe that doesnt work in my favour...ha ha. Thank you :)

The aftermath is the worst. I am so sorry about the emergencies and your funeral. Yes a few days at least after stuff like that and sensory overload and executive functioning and social skills. LOL I LOVE the Katniss analogy. Yes! May the odds be ever in your favour:)