Tag Archive | gardening

You Don’t Always Have to Feel Grateful That it Isn’t Worse

So, I’m going to just say that things have been pretty bad for me right now. I have so damn many health care, financial, and emotional needs that are not being met, and after three and a half years of waiting my turn, I need something better than this, I need more, I need to live and have hope and at least try to get treatment for some of these problems. But just because I need something doesn’t mean it is possible. Money is an asshole that way. All ways, really.

I am still grieving the loss of a dear friend, and I talk to her at night when it’s quiet like this, and I think she hears me, but I don’t even know how to put into words how much it hurts to obliviously type her name on facebook like I’m going to see her there posting updates, and then to realize that no one gets to hear her sunny voice again. Who knows why it takes so long for the shock to wear off and the sadness that won’t lift to settle in. It’s like my bones are crying now, and I feel her absence physically.

All these things coupled with isolation and excessive pain levels with secondary depression, plus a nasty chest cold have made me a slightly more bitter girl, and I apologize for that, but then again, I kind of don’t want to apologize. Though it’s embarrassing to go off on an angry rant and publish it and re-read it the next day and not recognize who wrote the words, I did write it, and I did mean every word when I was writing and that tells me that someone else out there can maybe feel less alone if I continue to allow myself to occasionally write the lows, the times I don’t cope well, that my chronic illness brings.

The reason I’m suffering this week is simple. I went out, I lived a life for a week with two social calls an hour away from my house, and the consequence for my actions are a dire flare up and infections, even though I practiced preemptive rest, stayed hydrated, slept beforehand and loaded up on vitamins. That’s what the fuss is about, for any non-spoonies reading this. That’s why I’m “obsessed” with my illness and I never seem to win. You can do everything right and chronic illness is still a merciless, evil, cold hearted f*ck who will laugh at your plans, your support network, your therapy progress, your talents, and even your basic needs, and which will deny you access to them all from time to time.

I’m not trying to paint a grim picture, or a “poor me” kind of portrait, I’m trying to say that all spoonies, no matter how small you may see your contributions to be, all spoonies are important. You are important and you matter.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          atleastitisntworse

I guess I’m leaning towards the idea that if I don’t censor myself, I will probably help more people feel accepted and welcomed into the chronic illness community. We don’t have to have rainbows shooting out of our asses all the time to be valued and welcome members of the online spoonie community. I like encouraging people with stories about good days and things I am thankful for, and I won’t give that up, but I also don’t want to be missing a whole group of spoonies who feel pretty worthless and unaccepted by the rest of the chronic world.

Everyone needs a place to belong, even the undiagnosed, the doesn’t-quite-fit-the-diagnosis patients who are still in limbo, they need our support more than anyone. That is a stage in my journey where I was bitter every single day for at least a year.

So I’m going to perhaps post more vehement pieces than usual and not hold myself back. I will stop telling myself I can’t write on my worst days unless I have a good attitude while I do it,because that’s not therapeutic for me, for one thing. I do factor in here too, somewhere, I think.

The reality of being ill is that you will have some good days, some of us get more or less of those depending on our situation, some of us don’t have good days physically, but almost all spoonies eventually get to the point where you can have a series of bad days that you can handle emotionally, and those bad days will make you proud of yourself later on without too much soul searching involved. You endured and even conquered your illness for a while. You got through it without snapping and that’s to be commended. But it’s not to be expected from you. Positivity during hardship is not the only “right way” to cope. Because look what happens next; you overdo it or the weather changes or you cough funny, you have a medication reaction, or you develop a new symptom or allergy and things get complicated.

“Didn’t I just get through another hard week like this?” you think to yourself. It drags on, but you get through it, kind of numb and just making it day by day. And then not-so-wonderfully, another health setback; you have to take care of someone else who is ill, you get asked to another social function you can’t get out of, you have to attend three doctor’s appointments in one week, or whatever else it is, but it adds onto the pile you had not quite dug your way out of from last week yet. But you get through that week, and the next one too, though on the bad days you’re just counting the hours, you can’t even take it day by day things get so overwhelming. Months go by like this, a cycle of debilitation and not-quite-recovery only to be met with more medical problems, more stress, more debt, more isolation and eventually the bitterness that you thought maybe you had “gotten past” can sneak back up on you.

I’m not saying you are required by spoonie law or something ridiculous to feel all of these things in these specific ways for these reasons. I’m just setting the stage for those who are being hard on themselves for not coping as well as they’d like, and for people who may not understand what suffering from an invisible illness can be like when you aren’t improving.

No matter how you cope, or how well you “keep calm and carry on”, you still deserve to be commended. You’ve gone through a lot, and you should feel safe and understood when you are being honest about your pain. Honesty is not negativity.

Wishing everyone extra spoons, low pain days, and super soft fuzzy blankets that don’t hurt you while you’re sleeping. ❤

Getting Used to New Symptoms, Again

Yesterday I forced myself to water my houseplants, they needed it badly after a few sunnier days with the windows open, and it’s always pretty dry in my house. I filled the watering can up just fine, carried it twenty steps across the living room from the sink, hurting but still relatively normal, and then suddenly as I barely got past watering the first few plants my muscles all started to shake, horribly. I was shaking so violently that my boyfriend could see it from across the room and insisted that I take a break. I did, but my strength didn’t come back, and it still hasn’t. As I finished up, one half-full watering can at a time spread throughout the rest of the evening, the severe spasms kept happening, and not just in one leg like happens when I’ve dislocated something, this was in every part of my body, from my fingers to my thighs to my feet, everything just quit on me.

I’m a little scared. This is maybe the fifth time this level of weakness has happened in the last three years, but some weakness and shakiness are near daily companions now. However, helplessly watching my own legs twitching and flopping around like an electrified frog while I cling to the table with quaking arms, that scenario still leaves me a little unsettled. I’m really not sure whether to be terrified, to chalk it up to a newer aspect of my Chronic Fatigue Syndrome and Fibromyalgia, or to roll my eyes and try not to think about it at all.

The mysteries that come along with chronic illnesses are not part of their charm. This newest episode is just one of dozens of odd symptoms that I can’t keep straight anymore.

Tonight I am getting some good animal therapy time in, with our roommate’s dogs while he and his family are visiting a friend overnight. The better behaved of the two girls, Jasmine, is an actual therapy dog, certified and everything, so she’s always great at comforting me when things are shitty, scary, or uncertain. I’m glad for the comfort and distraction two dogs on our couch provides.

thedogs

Along with the shakiness from yesterday has come insomnia, severe stiffness, SI joint pain that ruins me, and one partial dislocation after another, accompanied by the normal loud ka-thunk-ing and popping my joints do when they are the main culprit of my pain.There have been some pretty severe migraines, chest pains, and nausea as well. Lucky me!

It’s honestly not all bad news lately, I’ve been keeping it together pretty well and I have been proud of myself consistently for the attitude I have kept up.

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Spring has sprung and I can’t turn back the clock, only try to keep up. The veggie garden is becoming a demanding part of my daily life. My boyfriend bought cedar planks last week and built me two new raised beds wrapped with landscaping fabric so water can escape, but not dirt. We set them on the pavement, having officially run out of back yard to convert to food growing spaces. In defiance of my illness I have started a planting and preserving schedule that will keep me busy all summer and part of fall. On the flip side it will also provide lots of nutritious food for both families living in my house as well as my business partner and her new son.

It has actually, despite setbacks healthwise, been a few weeks of getting more than usual done, out of sheer willpower. Sometimes willpower isn’t going to fix anything, though. Yesterday was one of those times. Hopefully it doesn’t happen again. Hopefully nothing else weird happens, period. (Cue: laughter)

In the meantime, wishing everyone a low pain week. ❤

Follow me to Pinterest!

I have a confession, you guys:

I’m not proud of my addiction, but none-the-less, over five thousand people have chosen to enable my habit by following my Pinterest account, which I feel is basically a haphazard repository of my soul; the old me and the new me un-self-consciously coexist there, pinning images about chronic illness, gardening, art, preserving food, DIY beauty and health, style and materialism, homesteading, body image, a highly anticipated and hoped for future kiddo, and all my other dreams, projects, and ambitions.

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I have over 30,000 pins since joining in 2011. Yes, I am ashamed! Yes, I know how much could I have actually accomplished in that time! A lot, probably, But when my brain was nothing but a pile of mush for over two years, Pinterest actually helped me live slightly more in the moment, it helped me make new connections in my mind and learn new skills, as well as taught me to dream about things beyond this second and the severe pain I feel. Pinterest in all it’s soul-sucking glory has been incredibly inspirational, and allowed me to feel like I am still putting creative energy out into the universe even when I don’t have the brain power or the physical ability to begin a craft or art project.

More importantly now, it has allowed me to visually document ideas for the future, get ideas for blog posts, and learn how to make pretty much anything from scratch! Recently I have slowed down my pinning, and now spend more time making sure links actually work and deleting ugly dresses on my street style board. But I am still very active there and will remain so as long as it is even a mild creative outlet for me during my worst times. I refer to it often for herbal remedies, recipes, DIY project advice, and just for the sake of aesthetic beauty in general. I cannot count the number of times I have tried my hand at various pinterest projects, not always successfully, either! 🙂

Funny though it sounds, looking at other artists’ work, finding new bloggers to follow, and meeting so many other chronically ill people on Pinterest gave me the confidence to start dreaming in color again before I even had the blog; to visualize future art projects, to not be afraid of new symptoms, to think of small business ideas, and to start my new life as a blogger, an artist, and a whole, happier human being in the face of chronic illness. Not that the site did anything for me that I couldn’t have done on my own with more effort, just that I was enjoying the company of others again, using technology as a tool for reaching out to people with similar interests at a time when words were failing me.

If you’ve got lots of time to spare, can’t find the words to express how your chronic illness has effected your life, are lacking in inspiration for a project or event, or if you want to know what to do with something instead of throwing it in a landfill, come on over to the Pinterest darkside, and don’t forget to follow me while you’re at it! Please don’t hesitate to say hi while you’re over there.

If you have a post with an image that you think would drive traffic to your site, I am happy to pin any of my fellow bloggers’ work to my Chronic Illness board, which has many, many more followers than this blog! Just drop me a comment below and a link to the post and the picture you feel will help bring people to your website. I’m happy to do multiple pins for blogs too! I know how helpful it can be to have a few links to your blog circulating around Pinterest. Wouldn’t it be nice if pinning was a job? Seriously, I would rock the hell out of that for a company’s social media department!

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Little Big Moments

It’s pretty wonderful to make it through an episode you previously didn’t know you could make it through without help. Although the crippling level of pain I have endured the past two days has been completely unbearable by my standards, I did bear it. I don’t know how, I don’t know if my grandma was watching over me, but it felt that way.

This was my gift yesterday from my garden. I’m not religious, but things like this used to happen to my grandma all the time, so if she is by my side, this is definitely her way of saying I did a good job. Thank you, Grandma B. It’s difficult to grow melons in Oregon, even with a good season like we had this year. It’s difficult for me to have a garden at all with how ill I have been, but it would be harder still to not having one, to not see the growth and surprising tenacity of my plants as they make it through another summer of spotty watering and weird Oregon weather.

Ha Ogen Melon

This is my first Ha Ogen melon of the season. It may just be the best melon I have ever eaten. Melons are tricky in Oregon, so I’m proud of myself!

This beautiful melon managed to make my day yesterday. I cut it up and saved the seeds that had not already germinated. Delicious, sweet & flavorful liquor ran all over the cutting board as soon as I opened it. It may not have reached it’s full yellow potential, but it was definitely ripe!

Little big moments, like finding a perfectly ripe melon in the middle of a rain burst, are the things that keep us going when we are in pain all the time, when we are scared, when we are uncertain about the future or about the people around us. They are the things I hope to remember about each day, instead of the searing hot pokers in my legs and low back, or the steady drilling sensation in the back of my skull. Rather than focus on today being the day I got my brain scans back, I would rather remember that my garden did well this year even though I could not tend it like I usually do. Rather than focus on my lack of ability to clean the house, I would rather remember that I did somehow manage to get the dishes done and make something approximating a homemade dinner yesterday.

There are big victories to be found while living with a chronic illness, certainly, but they do not happen every single day. These little moments of strength, however, they actually do happen daily. The catch is that they only exist in reality if we know how to see them clearly through the emotional and physical chaos of chronic conditions, and that is a journey that doesn’t happen overnight. You don’t have to notice them every day for them to strengthen your soul, even once a week saying to yourself, “I did that, and I am proud of myself,” can make a huge difference over time. Sometimes you need help, and sometimes you need to do something difficult on your own.

I am proud of myself for getting through a serious attack without the panic and the momentary loss of self that sometimes accompanies a flare up. I am proud of my boyfriend for letting me wail and cry and scream my way through the episode without getting frustrated at me. And I am proud of my garden for producing such a beautiful melon even though it has been raining all week.

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chiaricontinues

chiariwife. chronic pain. awarness.

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