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When any food starts looking like an attractive snack, grab your enzymes.

When any food starts looking like an attractive snack, grab your enzymes.


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Don’t try to pass the blame on your passed gas. Cutting the cheese is just another symptom of EPI.

Don’t try to pass the blame on your passed gas. Cutting the cheese is just another symptom of EPI.


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Show the love and spread the word to CFers around the world with a reblog!

Show the love and spread the word to CFers around the world with a reblog!


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Feel like a little ranting and raving to get your point across? Tired of  the same old “just breathe

Feel like a little ranting and raving to get your point across? Tired of  the same old “just breathe” or “you don’t look sick”? 
Submit your own CF rant here


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Every year, the AbbVie CF Scholarship Program awards scholarships to CFers. So why not get in on the

Every year, the AbbVie CF Scholarship Program awards scholarships to CFers. So why not get in on the action? This is your chance to share your passion, drive, and what makes you, you. It could pay off in a big way, literally. You could win $25k to help with those college tuition bills. Click here to apply now 


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captaindibbzy:

joshsundquist:

Everyone deserves the opportunity to dress their best. That’s why I’m so glad to be able to share Tommy Hilfiger’s innovative #TommyAdaptive collection with you. #TommyPartner

I know this is very important for people with disabilities and such but all I’m thinking is “Oh this is where super heroes get their shirts from.”

This shit looks awesome. :D

#disabled    #disability    #spoonie    #adaptive clothing    #wheelchair    #prosthetic    #buttons    

weltenwellen:

Fariha Róisín, How to Cure a Ghost

“Just do yoga! Your health care team don’t know what they’re talking about!”

Me after trying yoga:


when-november-ends:

Low Effort Magic

I have a hard time doing something that involves magic every day, even though I’ve been on this path for quite some time.

Practicing magic a lot is by no means mandatory but it does help (in my opinion) to get better at it and it just helps with everyday problems. So here are some low effort activities you can do everyday that will hopefully help those of you with similar problems!



  • Write words like “protection”, “healing” or whatever you want into your drink with a straw or spoon before you drink it. Or draw sigils in it.
  • If you feel super exhausted for no apparent reason, open a window and scream or, if you like it, put on some angry punk or metal music to banish whatever is feeding on your energy. While you’re doing that, keep in mind that you want to banish. Otherwise you’re just playing angry music. Yelling “Fuck off” also does the trick.
  • When you eat or drink something, try to pinpoint at least one magical property of each ingredient in your drink/food. It can also be one that has no historical evidence but is personal to you. That will help keep you in the magic mindset and also helps you to get all if that info into your long-term memory.
  • Open the window, stand in front of it and breathe in the air deeply with your eyes closed while you remind yourself that tge wind is part of nature and that you’re connected to it. It doesn’t have to be a half hour meditation, 5 seconds get the job done as well.
  • Offer everyday activities to your deities. For example: cooking for Hestia, standing up for yourself for Loki, practicing magic or **self care time** for Freyja, disposing of trash the correct way to your local nature spirits, etc
  • Take a shower or a bath, or just wash your face or brush your teeth with the intent of cleansing yourself from all that negative energy that has built up over the day.


That’s all for this time. If you like it I’ll do another one. :)

image

Otherwise known as; I am in a rut of self-pity and can’t muster the energy to get out of bed, let alone do a ritual.  I have eaten onion rings and regret for the past 3 days as my main meal, I am breaking out in acne, I can’t remember the last time I had a wash. Time has become meaningless. I can’t get out of bed.

Devotional Work

This is a big area where depressed witches start giving themselves a really hard time. The guilt of not being a good devotee can become overwhelming, you can convince yourself that your higher power is starting to hate you. None of this is true.

 You wouldn’t expect someone with a physically impairing illness to be able to go out and buy a higher power flowers and gifts. Please do not expect it from yourself. One of my biggest tips is that you need to find peace in the reality that you are hurting. Instead of trying to live like you’re well and exhausting yourself by doing tasks you are not ready for or giving yourself huge amounts of guilt by making yourself promises you can not keep, live within your means. There is no need to kill yourself trying to live a life that isn’t possible for you at the minute.

Have an honest conversation with your higher power. Let them know that right now, you are unable to perform conventional acts of devotion and assure them that the love is still there. They will understand. Sometimes they will give you help. One of the perks of being divine is that this higher power has known millions of people just like you. You are not the first devotee to suffer from depression and you will not be the last. They understand.

 Here are a few alternative acts of devotion that are more realistic to give you a base to start from.

  • Eat a meal in front of your altar / dedicate your meal to your higher power
  • Take a shower.
  • Clean a small portion of your messes (This can be as little as removing 1 cup from your room, remember, do what you can)
  • Take 5 minutes to just sit and think about your higher power.
  • Talk out loud to your higher power like you would a friend. 
  • Go outside for two or three minutes. If you can, go for a walk.
  • create a Spotify playlist for your higher power; play it only in times of devotion.
  • Watch a YouTube video about your higher power.
  • Make your bed.
  • Spend quality time with a pet.
  • Light a candle.

Spells

Spells as any seasoned witch will know, require at least a small modicum of personal energy. if you have none to spare, do not push yourself into doing one. There is no witch council looking down and judging you because you have not done a spell in a few months. A lot of people think I am a ‘perfect’ witch. I haven’t done a spell since around March and I hold absolutely no guilt over this. It’s not a requirement. There is more to witchcraft than doing spells. 

Having said this, if you are ready to do a spell, do not try to ‘cure’ yourself. You will only be disappointed and have more doubt and self-hatred in your craft when it does not work. You can NOT witch your way into curing depression. Fuck what Facebook groups and crystal healing ebooks have told you. No amount of rose quartz is going to make you love yourself until you are ready to do so. These things are fine used alongside treatment, as an afterthought.They are an aid; they are not and never will be a solution. See a doctor.

Instead of going into spellwork with the mindset of ‘I want to fix x problem’ go in with the mindset of ‘I want to aid the process of my body and soul being able to deal with x’. ‘I want to remind myself that I CAN recover from x’. This is why self-care is a very powerful form of witchcraft. You are merely asking for the traits you already have (power, strength, love) to be enhanced and renewed once again. You are not changing yourself. You are refining yourself into the person you always were. You are reminding yourself how wonderful you have always been.

Here are a few links I think you’ll find useful.

Research

When your brain is clouded from fog and time is a word you’ve forgotten the meaning of, do not worry about memorising long lists of spell item correspondences. It is an actual, medical fact that when depressed our memory gets worse and we are unable to retain, process and recall information like we once could.

The reality is that the 99% of witches do not remember spells, simple correspondences or tarot meanings off the top of their head. They all use a mix of pure intuition and double checking. I’ve been practising in various different forms for a long time now, somewhere between 7 and 9 years depending on how strictly you use the term witchcraft, and I can not and never will remember the meanings of every tarot card, spell ingredient or colour. I can’t remember ritual orders, incantations or the dates of the sabbats.

 I was not blessed with an encyclopedic memory, in fact, I’d go as far to say that my ‘off the top of my head’ memory of witchcraft is worse than someone who has been practising and studying for as little as 3 months. What I do have, however, is notes, books and 6 years worth of blog links to refresh my memory. There is absolutely no shame in having to refer to these resources and it does not make you any less of a witch. 

This is why grimoires are a thing. We all have this notion that it’s so you can look back in the future on your old workings or pass them down to a relative. While both of these things are true, grimoires are working active reference tools, just like any other website or book. Don’t be afraid to use them.

I hope you found this post useful and if you have any other thoughts feel free to add them!

spooniestrongart:

May is a HUGE spoonie awareness month!


#als #lymedisease #lupus #asthma #mentalhealth #cysticfibrosis #arthritis #celiac #huntingtonsdisease #ehlerdanlossyndrome #multiplesclerosis #fibromyalgia #bechets #bpd #stroke #braintumor #mecfs

Maybe you’re newly diagnosed with Fibro, or ME, or EDS, or some other chronic condition that’s knocked you off your feet. You might be staring down the barrel of what life might look like for you now and wondering if you have to give up on your dreams of having a family. You might be wondering how on earth you will be able to keep up with your kids. Look, I’m going to let you in on a little secret. Nobody can keep up with their kids. Not even the ableds can keep up with these little balls of dynamite. My kid is not even walking yet and she gets into everything. She tears around the house on her hands and knees and pulls herself up on stuff and chases the cat and everything a curious little child is supposed to be doing.

This is what baby proofing is for! She’s safe. She can explore all she wants. We have baby gates, the furniture is anchored. We don’t leave out stuff that would be unsafe for her and we make sure the floor is clean to reduce the amount of lint she shoves in her mouth. We have a open floor plan and I can keep an eye on her at times, even if it’s a bad pain day and I’m mostly parked on the couch. We read books and cuddle and talk and sorts of other wonderful things.

If you are thinking “I can’t take care of a kid, I can barely take care of myself,” I would say that’s a valid point, but not one that you can’t address. You will build coping skills and learn your way around your body’s needs and figure out work-arounds for all the things you need to do to lead a healthy, balanced life (whatever that means for you). It will take creativity. It’s a process, and one you should be undertaking anyway, whether you are planning for a family or not. And you don’t have to figure it ALL out before baby arrives. Life will always be a work in progress. 

My kid is still little. I know there will be new challenges. But think back. If you had a good parent, what was it that made them a good a parent? I promise you it wasn’t “My mom climbed mountains and ran around with me at the park.” It was “My mom held me when I cried. She supported me. She believed me when I needed her to. She was patient and fair and encouraging. She sat (sat!) in the front row at all my dance recitals.” And if you had a painful childhood, these were probably the things that were missing.

Also keep in mind, you will probably have help. We all want to believe that we will start a family with a supportive partner that sticks around, and I definitely recommend it if that’s possible. But other types of families exist. Maybe it’s you, sometimes your ex-partner, and a supportive grandparent. Maybe it’s you and a close friend your kid takes to calling “auntie.” Support makes a big difference and it’s ok to say yes to the help that’s out there.

Another thing I wish someone had told me before having kids: they don’t just take energy from you, they give you energy back. Loving my daughter is the most energizing thing in the world. I am filled with joy every time she looks at me. I would do anything for her. If your baby needs you, you will dust off the old stash of spoons you didn’t even know you had.

Dear Chronically Ill, 

You won’t get better, but you will get better AT being sick. You will raise your baseline slowly with healthy habits. You will get ahead of what you need, you will learn your body, and you will laser focus your priorities until you can manage. 

Hang in there,
Your Future Self

Low spoon day? Still have to be a functional parent? Here’s some ways to entertain your little one when you feel like shit and have to save your energy for diaper changes. My kid is only 9 months old so these are mostly aimed her age and younger but lots of them can be adapted to older kids as well.

1. Sing. When I was recovering from childbirth and couldn’t do much physically I bonded with baby by singing. She’s older now and still loves it when I sing to her. She even dances. Sometimes I do little hand motions for the “itsy-bitsy spider” or “I’m a little teapot” folk songs from my couch perch.

2. Peek-a-boo. This is good for child development via object permanence. Hide under a blanket and then pop out.

3. Talk and snuggle.

4. Read books together. The more new words a baby hears, the better for their budding language skills. Books introduce not just stories, but bonding time, pictures, and object interaction. I use board books because my child is very grabby and destructive.

5. Watch cartoons and cuddle. When you hear you should keep kids away from screen time, the most important reason for that is that it is non-interactive. I believe there is nothing wrong with screen time (in moderation) if it is interactive. Tell the kid what they are seeing, explain the show. Ask them what they like about the characters, even if they can’t answer you yet.

6. Lay on the floor and let the kid interact with you. You don’t have to move around a whole lot to stack blocks or play with plushies or roll a ball around.

7. Bath time. Sometimes I need to soak my sore muscles, so kill two birds with one stone and wash the kid at the same time. Make this into a fun activity with bath toys and playful splashing. (This is best for kids old enough to sit up independently; I bathed her in her infant bath by herself before she was old enough for joint bath time).

8. Just show the kid all the things you are doing and narrate yourself. Babies are fascinated by you.

This time last year I was getting ready to vend at a festival that brings me an essential chunk of my summer income. I remember anxiously preparing every little thing to compensate for the toll on my body and even then being wiped out for days afterward. This year, I’m doing it again… but this time I’m 34 weeks pregnant!

At least the table is inside this year and I can avoid the heat. I’m bringing my partner to look after me and to cover my 1000 bathroom breaks. I’m trying to balance taking it easy a little bit due to my obvious limitations and the reality that I really need to put in my best effort so this can go well and I can afford my maternity leave.

FINALLY got a little rack* for storage in the laundry room! This area has annoyed me since we moved in last July/August. My back doesn’t like reaching that high and that far away to get things off the shelf, and I don’t want to overload it. And, I actually swept and mopped the floor before putting it in. Even wiped down the washer and dryer.

Took about an hour to put the rack together and then clean and reorganize. Break time!

*The rack is a bathroom 3-shelf space saver but who says I can’t use it anywhere I want!


I thought getting an Ehlers Danlos Syndrome diagnosis would be straightforward because of the Beighton Scale, but boy was I wrong. 

My rheumatologist said that my skin matched the criteria for EDS, but she didn’t think I was hypermobile and didn’t think I had EDS after examining some of my joints. 

A few months later my pulmonologist, who sees a lot of POTS and EDS patients, examined my skin and my joints and said I was hypermobile. He said I probably had EDS and referred me to a geneticist. 

I mentioned my hypermobility to my cardiologist, who also sees a lot of POTS and EDS patients, and he examined me and agreed that I’m hyper mobile. He went on to say, though, that I “don’t want an EDS diagnosis” because the symptoms of EDS are hard to deal with. I wanted to tell him “yeah, I know, because I’m dealing with them” but I kept my mouth shut.

Three doctors shouldn’t have three different opinions about what my diagnosis should be.

We’ll see what the geneticist says in August. 

My therapist told me recently that she thinks being healthy is a privilege. She said she doesn’t have to worry about whether or not a task will use up all of her energy before she does it, and she acknowledged how hard it is to plan your life around fatigue. Hearing that from her was so validating. 

I’ve had bad experiences with therapists before and thought I would never find one who understood chronic illness, but they’re out there. If you think having a therapist will improve your quality of life, keep searching for the right one. 

It’s more than ok to switch doctors if you feel like the care you’re getting isn’t adequate. It’s not unusual for chronically ill patients to see a dozen or more doctors over several years before they find one who can properly diagnose and treat them. Don’t let anybody make you feel like a “doctor shopper” or a difficult patient just because you want good medical care - after all, we wouldn’t have to see so many doctors if more of them did their job well.

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