Living a Magickal Life with Fibromyalgia
Article ID: 15890
Age Group: Adult
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Posted: June 13th. 2016
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I am not one to walk up to someone Iím meeting for the first time and say, ďHello Iím Wiccan.Ē Nor do I say, ďHello I have Fibromyalgia, Ē even though both are a major part of my life.
I recently came to the realization that for the last 10+ years, I have allowed my invisible illness to run my life. It was one of those things that happens slowly over time, until one day I woke up and thought, ďHow did this happen?Ē Thatís when I decided to take my life back. That is not, however what I am writing about today.
I am here to relay how Fibromyalgia has affected and changed my Magickal life. As with all things in my life, I fought hard to achieve the level of High Priestess. Fibromyalgia however, creates embarrassment in my inability to do many things. Tasks that previously could have been accomplished without a second thought, I now dread.
Deciding whether or not to participate in an activity or event is based solely on if itís something I can or cannot do. The problem with an invisible illness is you ďlookĒ just fine. Having a list of strange question or requests can often feel bothersome to event organizers.
To accommodate my Fibromyalgia I now plan ahead when either attending an event or hosting an event. When I will be attending an event, I inquire beforehand if I can bring a portable seat. I have a small fold up three-legged seat I can carry from my shoulder with a strap. If walking is involved, I first inquire about the distance. If it is farther than I can manage, I find out if I can meet the group at the end of the walking or skip that portion of the activity.
I also take tons of notes. I jokingly tell those I know I canít remember anything that happened five minutes ago.
Something that is extremely difficult for me, is sitting still for a long period of time. This means I usually choose to remove myself from meditations. Getting my mind to calm down is one thing but trying to get my body to stop sending pain signals is completely impossible. I would never want to be a distraction for those participating in meditations.
I also have an unfortunate high level of allergies. I try to position myself out of the direct flow of incense or smoke. If anointing of any kind will happen during the activity, I quietly mention I have allergies; usually the anointer will go through the motions without applying any oil to my skin. I have never had any issues with this thus far.
When hosting an activity, class or ritual, I try to ensure I provide a comfortable environment. If a ritual or activity will require standing longer than 15 or 20 minutes, I make sure seating is available for anyone who needs it. Whenever possible, I try to provide everyone with an outline of what will be happening along with approximate lengths of time. If I am leading a class, I type out what I want to say and try to follow my notes as closely as possible. I often find my brain and mouth refuse to cooperate. I sometimes say a word wrong or say a word I did not intend which is very embarrassing.
When preparing to lead a class or workshop. I make extensive notes and put them in the order I want the class to follow. If I stay with the notes I am less likely to forget the thought I was trying to express. Often I will write potential questions with answers. I also like to provide handouts along with an email for any follow up questions. If someone has a question that I just cannot answer I write down the question (s) and then send out a mass email to the class participants with the answer information. (When having participants sign in, I always stress the importance of providing an email.)
When I lead meditations, I ask participants to uncross themselves then get comfortable. It is my opinion participants find it easier to follow along with a meditation if they are comfortable as opposed to sitting a certain way.
The other things that bother me the most are: my internal compass is permanently broken, I no longer remember how to spell and I canít remember everything I used to. Dealing with these has been the most difficult for me. I used to be the person who could be counted on for various obscure facts about mythos or neo-pagan histories. I was the resident dictionary and no matter where I was I always knew which way was North. Even though I cannot tell which direction I am facing, I do have a good size library of notes and books on mythos and history. If I canít remember it, I know where to find it.
One of the hardest things for anyone with an invisible illness is being able to admit defeat or ask for help. It has taken me several moments of falling on my face (sometimes literally) to get to this point. I donít think it will ever be easy but when stuff has to get done it has to get done and I have had to learn how to let go.
When we host rituals my husband is responsible for setting up the altar. If I am leading a ritual or speaking during one, I read over the material several times and I always slow down ensuring to take a deep breath and ground and center before I begin.
I have a dictionary app on my phone, it has a microphone feature and I use it several times a day, not only to look up the spelling of words but also the meaning of words I canít seem to remember at any given moment.
I have also had to humbly and respectfully admit when I just canít remember history or mythos. When interacting with students I sometimes tell them, ďI donít remember right now but I am writing this down and I will look it up.Ē I think my biggest savior is my notebook. I have tabbed off different sections: one for general notes, one for things I need to look up and give information on and the other is a never ending list of things to do. I write everything down no matter how insignificant it may seem to everyone else.
For most individuals with an invisible illness, every day is an unknown. There is no rhyme or reason to it, thatís just the way it is. And for me, there is no giving up. No matter how many doctors say, ďI have run every test I have access too but I have no idea what is wrong with you, every test result has been normal.Ē I refuse to stop searching for answers, not just for myself but also for all the people who donít have a supportive family or donít have insurance or just donít have the energy to put up a fight.
I havenít written this in search of sympathy. I know where that lies in the dictionary (between sh*t and syphilis) . My intention is to give insight on what it is like to have an invisible illness and how easily accommodations can be provided so no one feels left out or too embarrassed to ask.
Let me assure you that not all days are horrible, they are never pain free but most days are manageable. For some, a change in diet with some gentle yoga can make a difference. It has for me. I still have bad days but I have many more good days. There are always days when I think I am just fine.
It is my opinion that continuing to persevere, following your dreams, doing the things that make you happy can give some normalcy to life. I would hope that consideration for those with an invisible illness would be attainable in a community that is very familiar with persecution.
Blessings and Gentle Hugs
Location: Harleton, Texas
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