Come along with me, the Cosmic Gypsy, for a raw & unedited barefoot journey through my life with multiple Chronic Illnesses; Fibromyalgia, Chronic Fatigue, Myofascial Pain, Osteoporosis, Addison's Disease, POTS- just to name a few.
I’ve been wondering lately, is chronic illness downplayed by the healthy friends and family for the comfort and reassurance of the Spoonie or the person downplaying the illness?
Spoonies, have you noticed how much our illness gets downplayed by friends and family? Have you ever wondered why they do that? Is it because that truly don’t get how serious and life impacting the condition is? Do they do it because they don’t know what else to say to us? Are they trying to be reassuring? It is reassurance for us or for them so they don’t have to face our conditions?
Healthy friends and family, Do you realize how your downplaying makes us feel? Most chronic illness are invisible and your minimizing makes us feel like you don’t believe our symptoms are real or that we make to much of it. It makes us feel like we have something to prove to you, sorry I don’t look sick today! It is hurtful to us! We are not this way by choice, believe me, if we had a choice we would not have this/these illnesses.
Some days (or partial days,) more lately than I care to admit, pushing through it is not an option! I lift my head and it feels like it weighs to much to hold up, I get a strange slow motion dizzy and my head just slumps, it’s not that I don’t want to be out of bed “pushing through” my day, it truly is that I cannot!
People say they envy me on these days, they say I am “lucky!” or they wish they could be like me and spend the day in bed! Wait!!! What?!!!
There is nothing “lucky” about this, rather it be the weird spins I explained above, the severity of pain, the lack of mobility for whatever reason- I assure you IT IS NOT LUCKY! It is scary, depressing, painful, lonely, did I mention scary? Scary because of what it could be, am I in crisis and not coherent enough to know it, will I wake up from this nap? Please don’t envy my luck, I envy your health, your ability to push through it, to me, that is lucky!
I realize this can be a term not meant as it’s said, maybe you just mean you need a nap, or you’d like a day off, but when I hear you say it I cringe, I wouldn’t wish my “luck” on anyone!
I have had many many days where I do not have a choice of getting out of bed, I am DIS-able to get out and face life like I want to. Many of us Spoonies face life in the 4walls of our rooms, from the DIS-comfort of our beds, often times pillows soaked in tears and medication induced relief is far and few between. It is not an enjoyable day/week/Month/year of lounging ecstasy, it is not enviable.
Yes you may see us active on social media talking of reading a book, watching a movie, or listening to an audio book, but what you do not see/hear are the agonizing cries of pain or the anguish of loneliness and depression of the person we once were and the life including career/friends/hobbies that has been lost. You don’t see the rapidly racing thoughts that come when the pain is to high and we haven’t slept in days, those moments we wonder what it’s all worth when tomorrow threatens another day just like today. You don’t see that, you envy what you imagine our day to look like, but the reality is more than most people could handle- and we do it everyday.
Unless you have passed down some genetic/hereditary thing to your child/children you may not understand what I am about to say, but I will try to say it so it makes sense…
It’s a guilt that twists in your gut, in your heart, in your soul. It is a guilt that people will try to ease with “it’s not your fault.” That really doesn’t make me feel better, because while I did not have a choice of this thing I have passed down to my child/children, they have it because I of me.
I’ve seen the signs, symptoms that match my own, in one of my boys and as he grows older I see them more prominent and that guilt just twists the hole in my soul even deeper.
As their Mother I’ve wanted only the best for both of my boys, I wanted them to have better and be better than me! That wish list included them to never feel the effects of a chronic illness, and yet I see in one of them, a couple of possiblitlities that have not yet been confirmed.
Not yet confirmed diagnosis, because he is now of age to make his own decisions and he doesn’t want the label, doesn’t want the words said out loud! I understand that, but, I also know that left untreated things get worse!
Today I had a down day, tonight’s weather report told me why today was so down- rain in the forecast… Today, he also had a down day, an unexplainable (yet totally defendable) down day… it’s a normal thing- he is equally effected by the weather and it breaks my freaking heart to know exactly what he is going through, the thoughts and feelings I can explain because I do it every time it rains too. I gave him this, I didn’t mean to, but The fact remains.
The plus is he doesn’t have to do it alone, I do understand! It is a double edged sword though, because he has seen what I go through, because of what I go through is exactly why I feel the guilt of passing this thing onto him.
Regardless of the pluses, the negative is I can’t fix this, this thing that I caused.
I know it is truly not my fault, that I am not to blame, I guess I just get so angry and feel so helpless.
My Healing Hound Sadie had to spend last night in the doggy Hospital! It started sometime yesterday, her vomiting and then last night poor baby had blood in her stool! She was very lethargic!
Hubby did some internet searching as I laid on the floor near her bed just petting her, he says “call the vet I think we need to take her in!” My heart panicked but externally I remained calm!
So we took her to the Emergency Pet Hospital! Sadie was running a super high fever so the vet decided to keep her over night for fluids and monitoring.
Those words brought tears to my eyes, I didn’t want to leave my baby there. Anyway, the nurse came in and set Sadie up for her IV, she cried and the second leg was worse!
The more upset she got the more upset I got- I thought… I didn’t think though, I didn’t think of how she picks up my stress (and low Cortisol,!) The nurses took her out of the room and bam, Sadie took the IV easy as pie! But then that was it, no cuddles or anything, just a Go home and call in the morning!
We got home and Stress dosed, but the low Cortisol symptoms came anyway! So at 3:30am I was wide awake, in severe pain, and emotionally distraught, and making trips to the bathroom. Then I slept.
At 9am I woke, how could I sleep so late when poor Sadie is at the hospital, is she okay?
Well, the vet is monitoring her through the day today, right now she is resting and doing okay.
I wish I was resting and doing okay! My pain has
Me barely able to move, yet to uncomfortable to sleep! I’ve stressed dosed, up-dosing was not enough!
Today my goal is to NOT go into Crisis.
Come on Sadie-girl, get better so you can come home, your Healing partners miss you! 😢
You’d think I would be used to going down again, you’d think my expectations for staying in the good day zone wouldn’t be so high, yet it surprises me when I go down (or technically flare up!)
But not only am I surprised, but extremely disappointed. I have had so many up days I was secretly hoping I was cured. Why do I do that to myself?
So here I am, 3rd day of this flare! I think it actually Started Saturday night, I remember having to concentrate really hard toward the end of the night to understand people’s conversations.
Anyway, the weather isn’t helping at all! It’s dreary and cold.
So what happens when I have a “down day?”
My head hurts, like worst hangover ever kind of pain! These colorful fogs I see when my eyes are open are still there when I close my eyes! And no pain medicine will touch it.
My stomach~ I’m hungry but nothing sounds good!! I try to eat anyway and it takes all I have not to throw it up. Not to mention the explosives emptying of my bowels that shouldn’t have anything left anyway.
My muscles feel to heavy to move and burn if I make them move. My bones and joints all feel bruised, badly bruised. To walk feels like every bone in the bottoms of my feet are broken.
Dizzy, shaky, short of breath from the pain, fatigued. Weakness…
Here it is, the post revealing the stressors! After this post is posted it’s Blank slate for me~ tabula rasa! But I promised I would tell you when I could, I can now.
The biggest stressor started about 9 months ago, yep you see where this is going, my sons x-girlfriend at the time accounted she was pregnant! I won’t go into the drama that went on, but it was very dramatic. But we were excited! My son was looking forward to being daddy, and me? A first time grandma- yep, I couldn’t wait. Then it doubled- TWINS!!! The Drama doubled too. Well almost a month after the girls were born my son got his first visit, and he glowed! Then he finally convinced her to do the paternity test… He is NOT the dad, I am not the grandma. We went through the hell this little girl (baby mama) played that whole time… it sent me into flare after flare and near crisis more than once. I glad to be done with her!
As for my steaming and venting about friendships, I think I already posted about “I wanna talk about me,” a while back and that is what has been on my mind a lot lately. I’m very hurt that maybe my healthier friends don’t think I have a life to talk about, maybe they aren’t interested in the garden I tried showing of, maybe they don’t know what a big deal completing the herbal course was to me, maybe they… Hell, I have no idea why after I support them in every area of their life that I can think of, even areas I don’t agree with, I support and encourage and motivate them but it’s to much to ask for the same in return? Fact is I shouldn’t have to ask for it, it’s what friends do. A few of the friends I had talked to about it a couple of times, but there hadn’t been changes so I pushed them all away. Not because I’m mad but because I need to take care of me and those situations were hurting me.
Those have been my biggest stressors, so here and now I am cleaning the slate to blank, making room for the new and more positive energy! Releasing the anger and hurt, the tears and the screams, the sleepless night and self doubt- RELEASED!
Herbally Hopeful! I didn’t know what else to title this post because words aren’t going to be able to convey what I am trying to say in the way I hope they would.
I’ve kind of always had an interest in herbal lotions/oils/salves etc but never really knew much about them or how to do them or even what herbs did what!
That all changed about a month ago, on April 21st I signed up for The Herbal Academy. I signed up for the Introductory level course, with a year to complete it and a payment plan I thought it would be perfect.
Then I panicked!!! I mean I freaked out! Seriously, what was I thinking, my brain fog is never going to allow for me to pass quizzes to get my certificate of completion! My eyes won’t allow that much reading! What was I thinking?
So starts the adventure… Chapter 1 and the panicky feeling multiples, this is a whole new vocabulary, my brain function will never allow this!
Oh but my brain function exceeded my expectations!
The reading materials were like I was working from a perfectly good brain with amazing recall abilities! It felt like it was all stored in a safe place in my memory bank, a place that hadn’t been tainted by illness or medications, just waiting for me to ask for it to be recalled!
I ordered some supplies and got to work on my first salve, a muscle salve that works amazingly. Again, my memory and other cognitive skills were like I’ve never seen them. And I love doing the work! I love reading about what herbs are best for what and then testing them out. I love how the process is like meditating, everything else in the world disappears and it’s just me with whatever I am making.
The finished product revealed that I had not read the directions properly, but that was an easy fix, I melted it down, fixed it, and finished it. I love the easy corrections.
Another thing I really love about my herbal concoctions? It’s minimally painful!
I pour in the herbs and oils to get them infusing, 3 days in the crockpot! Then I drain the herbs from the infused oil and blend with other ingredients then put them in their bottles/jars/ cans etc- ready for use. Each step takes less time and energy than a shower does. So as long as I go by some set of directions exactly and one at a time, I am able most days to accomplish something!
Anyway, I was able to complete the course in less than a month!!! I congratulated myself with more supplies and more projects!
The process of each product is soothing, the finished product is truly pain relieving! It’s a beautiful combination!
And it brings me a sense of pride! These illnesses took away my hobbies and career opportunities! They took away my pride. Finding herbalism has restored my pride and has lessened my need for other people’s approval. This is my thing and so far, Id say I do it well! * I’d be lying if I said I didn’t notice who did or didn’t congratulate me and encourage me with the herbal course and especially completion of the course, but that isn’t this post, but it is EXACTLY what made me realize I need no ones approval or congratulations!
I am finding emotional strength! Hope! And it feels amazing!
The point of this post; no matter what our abilities or disabilities, find passion in something you can do now! Looking back at the person before the illness and wanting a hobby or passion they had is only hurting ourselves! It may take some time, but open your heart and mind to the possibilities of right now!
Yes I still hurt as bad as ever! Yes the insomnia still keeps me up! The brain fog still has me putting toothpaste in my hair! Yes I still sleep most of the day everyday. But finding this passion makes life more bearable.
*ps- I will not make anything edible, I don’t trust myself that much! And all products I try myself before my family does!