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!!!
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.
It seems like I have a never ending To Do list. Just when I manage to cross off one or two items I add on three or four more. Most of the time these are calls to Doctor’s offices or errands to be run. Sometimes there are chores I need to accomplish around the house. A project I really want to put the finishing touches on. Something one of the kids needs for school.
The problem is that I hate my To Do list. It sits there and mocks me. It criticizes me. It tells me how I don’t measure up to what I should be. It tells me I am lazy or unmotivated. It tells me I am slow. It tells me I am not good enough. It’s not very kind, this To Do list. It’s not very forgiving either. It expects me to get it all done in one day. It doesn’t see why it should linger there for days or weeks even. It doesn’t see the need to be added to and rewritten. It doesn’t see why it should be shuffled from here to there and sometimes told how much it is hated.
You see I have chronic illnesses. I have fibromyalgia which has fatigue as a major symptom and I also have narcolepsy which….well, narcolepsy… my body wants to sleep all the time. Add on top of these my chronic depression and you have a mixture that is ripe for To Do list hatred. Most days I have little to no energy or motivation. When I do happen to have the right mixture to get something accomplished it is usually short lived. This is very frustrating and demoralizing. Which, as it happens, is the prime cause of To Do list hatred.
What do you do about To Do list hatred? Well, there is only one cure that I have heard of and it is very difficult to achieve. Very few people can actually achieve it permanently. Most usually suffer setbacks at some point. What’s the secret? you ask. It’s not really a secret. The cure for To Do list hatred is forgiveness and acceptance. Forgive yourself for not getting it done. Accept that you are doing what you can and it will get done when you are able. See? Easier said than done huh? But it is true.
Those of us with chronic illnesses have a limited energy reserve and our body needs it to heal itself. We need to conserve every bit of energy that we can by resting whenever possible while remaining active to the point of not overdoing it. It is a delicate balancing act that few can achieve perfectly. Especially in the beginning. Stress should be avoided. Especially stress from judgmental To Do lists. 😉
**Disclaimer: None of these pictures are of me or anyone I know. They are random pretty people off the interweb I found in a Google search for images.**
Guys, I try to be understanding, you know? I try to remember that no one knows the hell we go through in our bodies but us and that it is pretty near to impossible to imagine, but, holy heck, sometimes I get so tired of being the understanding one. You know?
So here is what happened….. My best friend and I are getting ready to take a 9 hour road trip with 4 teenagers (2 boys, 2 girls) to go to the beach for a week. Now my friend will do most of the driving and the girls are going to drive their own car so we won’t all be jammed in one car. Whew! That’s a relief. I am however really worried about being able to make it through this vacay still on my feet. This is my first one of this length since I got sick. Last year we went to Hilton Head for 3 days and it kicked my butt. Anyway…. I was trying to get all my “stuff” done early this week so I could rest Wed., Thurs., and Fri., then packing up with help on Sat. I ran errands Mon. morning then came home around noon and napped the rest of the day. That left me with a ton of stuff to do yesterday!
So…. first, I needed to visit some thrift stores to look for a push wheel chair or transfer chair. I need a way to make the 300 yard trek from the hotel to the boardwalk to conserve my energy and protect my back because walking makes it hurt. Then I was going to get my eyebrows waxed because EEEk!, grab a couple groceries at WalMart that only come from there, get a pedicure because again EEEk!, pick up a prescription, get a massage/myofascial therapy to help with back pain, and go to Super Target for sunscreen, groceries that only come from there, check for clearance sand toys, stuff like that. Whew!!!! That is a lot for a girl who is only out of bed for an hour or so at a time!! So I decided to cut the thrift stores out. I had already visited a ton with no luck and Walgreens had one on sale $50 off and I had $20 reward to use, so it wasn’t too bad. Then I bumped into my Mom at the Hair salon and begged her to get the Walmart groceries for me while she was there. Grocery shopping is the worst on my back so I was very grateful to her for doing that for me. Ha! Three things off my list.
Now, waxing. As you can imagine, that is pure torture with my sensitive nerves. Fibromyalgia makes your nerves about a hundred times more sensitive than the average persons at least. Sometimes we are hypersensitive and it is even worse. Today it was bearable but barely. The stylist always laughs at the faces that I make when she pulls the strips off. I also make little screams. I apparently scared a teenager out of trying waxing yesterday. Sorry honey. It isn’t that bad really. Only lasts a minute and much quicker than plucking. My arms are so weak though that I can’t pluck my own eyebrows anymore. I have to go get them waxed about once every 3 weeks. Okay, torture part one, Over.
Now on to torture part 2. This one is not too awful bad.. Lol. Getting a pedicure has it’s good parts. Soaking my feet in the nice warm water helps take out some of the toxins in my system and just plain feels good. However, my feet are very callused and also I get the one that comes with the sea salt scrub so that isn’t pleasant. Overall, the pedicure is one of the better parts of the day with minor torture thrown in. I got my nails painted my favorite shade of blue and she painted little palm trees on the big toes in honor of going to the beach. I have never done that before.
So then I rush across town to the massage therapist. Now she is not just any old massage therapist. She is a mean massage therapist. Lol. Just kidding. She practices Myofascial Release Therapy which she learned from the guy who came up with the treatment. Basically, it incorporates massage and PT and she digs right into those trigger points to get them to release and relieve the pain. At least that is what it feels like to a layman. I have a few pics I am going to post but if you have fibromyalgia I definitely recommend you look into it. I cannot afford to go to her as much as I would like but I can always tell a difference after she works on me. It hurts like heck. Sometimes I groan or ouch or make a little squealy sound, but I really try to not be a baby about it because it really helps. It kills me though when people are like acting all jealous about me going to get a massage that is torture for me and I try to explain but they are just like oh yeah, sure…..
After all of that I finally get to go to Target (Heaven on Earth), and I really just want to go home and go to bed. I know that if I do I will have to come back out another day and do it and I already know I will be laid up tomorrow. So off I go to Target. I use the zippy cart and barely make it through. I finally get out of there and home. I have been going from 9 am til 4 pm. I lay down immediately and sleep til 9:30. I only get up then to use the bathroom when my kids wake me up to make sure I am ok. Lol Before I got sick I could have done that and come home feeling refreshed and happy and ready to tackle anything. But now I just feel like I have been hit by a truck and I could sleep for a week. I definitely overdid it. Such is life with Fibro. It really sucks. Tell me about your experiences. Do you feel like some of the things you used to love before are now torture? Can you handle massages? How do you handle it when you have to put in a full day? How do you prepare for a long trip? Leave me a comment guys. I would love to hear from you!!
We CAN do this!!
We WILL do this!!