I got these images from the “Life after the semicolon” page on Facebook. It is a good resource for those of us who deal with depression, suicide, or any mental illness really. Check it out. I recommend keeping these images on your phone or tablet so they are handy for you to do a quick self-check from time to time.
Here is another one. Kinda similar to the first but not exactly the same.
Hang in there beautiful people. Remember you can always reach me by dm or by email. I am here if you need to talk to someone but I am not a medical professional. Do your best and reach out for help if you need it. You got this!!!
Oh my gosh!! I am so honored and just amazed!! I hit 1,000 followers on Instagram today! Thank you all for following me and sticking with me when I am not up to posting or I post yet ANOTHER cute doggie picture. I love it when you comment or message me that a post has made a difference in your life. I love hearing from you period!! Feel free to message me if you need to talk to someone. I will do my best to reply as soon as possible.
#spoonies #spoonielife #spooniefriends #fibromyalgia #fibromyalgiawarrior #fibromyalgiaawareness #chronicpain #chronicillness #chronicillnessawareness #chronicpainawareness #chronicpainwarrior #narcolepsyawareness #narcolepsy #narcolife #arthritis #arthritiswarrior #arthritisawareness #everydayisabattle #youareawarrior #warrior #fibrowarrior #narcolepsywarrior #arthritiswarrior #chronicillnesswarrior
Hello beautiful people!
I am sorry I have been absent for so long. April has been crazy. So, the end of March my ex-boyfriend contacted me and we got back together. We had a wonderful three weeks together and then something happened and we broke up. I am not going into details for the sake of our privacy but suffice it to say that the issue is pretty heavy and serious. I love him still, and probably always will, but we just cannot be together. We broke up on Saturday, and I have been on a rollercoaster of emotion ever since. My depression and anxiety have been going haywire. On Sunday, I read this post on Instagram, and it really resonated with me. I am reposting it. I hope that you all get something out of it as well. Be sure to check out @beautiful_fibro_disaster if you are on IG and if you don’t already follow me on IG, I am @fibroscoop.
At my weekly dr. appointment, mark asked me to try leaning into my feelings. When I feel sad or angry… let myself feel. I have persistently been feeling worthless, powerless, useless, trapped, insignificant, lifeless, pointless and unmotivated to change that. 2x this week my husband came home from work and found me laying in the shower, sobbing.
The path to learning to love yourself, be kind and nurturing with yourself…is a long, rocky one.
Trying to accept that I’m struggling not because im failing at life, but because I have, trauma and legitimate mental illness is hard. All of this happening is NOT MY FAULT and its NOT FAKE.
Mental health is such a complicated web. I want to share with you guys the real world of mental illness. Just like having cancer or a broken leg, you have no control of it happening to you. It’s not a choice. And it’s a real medical occurence. Just like any illness it comes with symptoms. Those symptoms attack constantly.
If you got cancer. You would treat your symptoms right? Pain,
nausea, fatigue etc. You would nurture your symptoms but you would also treat
the source right? Chemo, surgery…a mental illness come up in your life
shouldn’t be ignored or shamed. You should seek help, treat your symptoms. I
want to encourage all to do that! It will still be hard, but there will be
People need to see that mental illnesses is real, it’s common, there are others like you! And it’s okay. Its okay to have mental health issues, it’s okay to seek help, and it is okay to be working on it! You dont have to hide. You dont need to be ashamed.
Taking Mark’s advice made me feel like a mess a few times.
But it was also calming to stop life and let my world be about how I
Crying is a sign of healing. It’s a true deep processing of emotion. It’s a good thing 💜
So,I take Nuvigil for my narcolepsy. It doesn’t have me functioning at a normal level but it gives me a few hours of close to normal and then most of the day at a safe to function level. My Dr still doesn’t want me driving in the evenings. Ok, so every month when I go to fill it, there is some kind of problem and I sometimes end up having to go without for a few days resulting in me sleeping literally all day long, about 21 out of every 24 hours. So yesterday was my last pill and my Tenncare won’t let me fill anymore prescriptions until April 1st because adults are only allowed 5 prescriptions a month. So I get to go without meds for 4 days then about 3 days at least to build back up in my system. Thank you narcolepsy! Thank you Tenncare! I get to sleep thru 4 days. Woo hoo!
So here I was perfectly happy plugging along in my not so perfect world totally oblivious to the fact that I was about to cease to exist. Yep. That’s right. So it started with a couple of texts from friends asking if I had posted a video on my timeline that looked suspicious. I replied no and quickly posted that I had not posted it please do not open it. Then I set about trying to remove it and to figure out how I had been hacked.
Well, stupid me clicked on a link FB had on their support section that said Help! I have been hacked! or something like that. I clicked and it talked me through deleting the video and changing my password. But THEN it logged all of my devices that were logged into my FB account out of FB so everyone using it would have to log back in with the new password. Fine, I know the password.
So, I go to log back in on my phone and uh oh I have two factor authorization turned on. It is going to send me a code on my phone to enter and make sure it is me. Fine. Do it already so I can get back to business. Well, I wait and wait and wait and wait. No code. I resend it. No code. I look at the other ways to log in. They have the correct phone number. I ask the boys for help. I ask my brother for help. Can’t ask FB for help because they have NO customer service!! UGH!!
To make a long story short. After two weeks of begging and pleading with my phone, computer, and iPad….I could not get logged back into my account. The one I had used since my youngest was 3 so 11 years worth of pictures and memories. I am the admin for several groups. The ONLY admin for several groups which are now crippled because no one can approve new members or do anything that requires an admin. I cannot access my blog page. I cannot even post on the page to tell the people who follow me that I have a new page now. It is ridiculous. I am starting over. I am not one of Facebook’s biggest fans right now. I will not be bragging on them anytime soon. My followers can find my new blog FB page by clicking on the social media links or following this link. https://www.facebook.com/fibroscoop1/
Someone posted this graphic on Facebook. I have tried many times to explain this to people. That my pain is higher than typical. I don’t know why but it is. My baseline or normal includes pain. I ALWAYS hurt. Every. Single. Minute. I never drop below a 4. Never. A 4 is a good day. Think honestly a minute about how you might be acting at a 4. Compare. I don’t want admiration. I just want understanding. Understanding of what I go through. Understanding of what I feel. That’s all. Jus a little understanding.
So, there are many things to hate about Fibromyalgia. I could spend all day talking about them, but, instead, I will focus on one of the things I hate most. That is the big fat question mark over the rest of my life. When I got sick I had a plan.
I was nearing the end of my Bachelor of Arts in Education degree. Then I was going to teach while getting my Masters in Special Education. Each summer I would travel to one of the places on my travel bucket list. Once my youngest graduated high school, I would be working in Puerto Rico at a deaf school one of my professors had started there.
I had a plan and I was well on my way to achieving my goals. Then I got sick. I was unable to student teach and, while I did get to graduate with my degree, I was unable to get my teacher certification. It doesn’t really matter much right now, because my health has continued to deteriorate until the point where working is impossible. The arthritis and fibromyalgia pain in my back and hips is so bad that I cannot stand or sit upright more than an hour or two each day. I cannot walk very much either. Some days I cannot walk at all. My legs are weak and give out on me.
I have filed for disability and been denied again and again. So right now I spend most of my days in bed, alone, bored out of my mind. I try to keep myself busy by coloring, crocheting, watching TV, reading, working puzzles, blogging, etc. A lot of these are limited by pain and weakness in my hands. I am sick to death of TV. Reading is hard with the fibro fog.
I spend a lot of time on social media but that in itself is kind of boring. I prefer real interaction. I miss working. I miss being active. I miss swimming. I miss traveling. I miss spontaneous road trips with my kids. I miss a lot of things. Mostly I miss knowing what I was going to be doing with my life a year, 5 years, 10 years from now.
My life is just one big question mark now. I don’t know how I will feel tomorrow. I don’t know if I will be able to walk or not. I don’t know if I will be able to stay awake. It makes it hard to make plans. It makes it hard to do anything. It makes it hard to hope. I don’t know if I will get better or worse. There is no treatment for fibromyalgia. There is nothing they can do for my arthritis. I don’t know if I will ever be able to work again. I have no idea if I will ever be able to have a normal life again. I am 43.
What about you? What do you hate most? Do you find it hard to plan your life? Do you find it hard to be hopeful?
Fibromyalgia is a very confusing condition for several reasons. First of all, there is just not a whole lot known about Fibro. Not a lot of money or time is put into the research of Fibromyalgia. Second, there have been a LOT of symptoms that have been attributed to Fibromyalgia.
Sometimes it seems like once you have the Fibro diagnosis every time you have a new symptom your Doctors just say, “Oh, it’s the Fibro,” without even investigating for other causes. I have noticed some Fibro patients are bad about this as well. I have left many bulletin boards and support groups because I have gotten sick of all of the “Who else has my symptom?” posts. They go something like this:
Initial poster: “I have noticed every time it rains that my left nostril gets stopped up and my right elbow itches. Does anyone else have this problem? It is driving me crazy. My neighbor’s sister’s dog’s groomer said I can take supplement X to help but I don’t know what dose to take….”
Answering posts (approximately 84 out of a couple thousand users): ” Yes!! I have that and it is a Fibro symptom! It is caused by ….insert one of 84 causes….and I take supplement …..insert one of 20 supplements….and it works wonders!! I take …. insert one of 20 doses…. Good luck and keep us posted!!!”
Third, Fibromyalgia is very hard to explain because it is not just one type of pain you are dealing with. I experience about 7 or 8 different types of pain from aches to sharp stabbing pains to electric shocks to pins and needles. The type of pain varies in location and intensity. I have certain places that hurt a lot of the time but no part of my body is off limits and I never know what will hurt today.
Fourth, patients can experience numbness and weakness in their arms, legs, hands and feet. This makes using their hands or walking and driving difficult. It limits activities.
Fifth, fatigue. Fatigue is a major symptom of Fibro and one I struggle with in particular. Sometimes the fatigue is so bad I cannot lift my head from the pillow. It can last for an hour or it can last for weeks. I have no idea when it will hit or how long it will last. My medications also make me sleepy, and I have narcolepsy which makes me experience excessive daytime sleepiness. It is a wonder I am ever conscious!! LOL. I struggle with this. Sometimes I feel like I sleep through my life. I have to take at least one nap a day.
Sixth, Fibromyalgia is unpredictable. Some days I may feel pretty close to normal and may be able to go shopping for a little while or run errands or clean a little. These days are rare and I try to make the most of them. Other times I may sleep for a week or writhe in pain for days. I never know what a day will bring. I have gotten better at predicting my arthritis pain. I know if I am walking/standing/sitting up for a few hours a day then I will have 3-4 days of extreme pain in my hips and back. The Fibro pain though is pretty unpredictable. I do know that it is affected by the weather. When it rains I hurt. I know that much.
Seven, there is no set treatment. There are a few drug regimens, some get results with exercise regimens, and others with dietary changes or supplements.
Last, no two people with Fibromyalgia experience it in the same way. The same can be said for treatments. No two patients respond to treatments in the same way. A lot of treatments are spread by word of mouth and are tried by desperate people paying out of pocket in hopes of finding ANYTHING to help relieve the pain.
Hopefully, in the future we can make some progress in helping those of us with Fibromyalgia find some relief. It is difficult to live a quality life when you spend a great deal of it in pain. Gentle hugs out there to all my Fibro brothers and sisters. Comment below and let me know how you are coping and how you are dealing with the pain.