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.
Yesterday I spent all day at Knoxville Comprehensive Breast Center. I had 3 mammograms, a ct, 3 ultrasounds, an mri, and a biopsy. There is a mass in my breast about an inch wide. We should know by close of business today if it is cancer. Prayers, warm thoughts, crossed fingers, etc. all appreciated. I will let you guys know when I know more.
#fibromyalgia #fibrosucks #fibromyalgiaawareness #narcolepsy #narcolepsyawareness #narcolepsyproblems #narcolepsysucks #arthritis #arthritissucks #arthritisfoundation #arthritisawareness #tests #mammogramssavelives #breastcancerawareness
Me….the past couple of weeks. It sucks. I can’t get anything done. Yesterday I went to one store and was too exhausted to continue my Christmas shopping. ONE!! I am never going to finish in time. Not to mention everything else that needs to be done around the house. Phone calls that need to be made. Gifts wrapped. I need a nap!! Ugh. How do you deal with killer fatigue? Any secret weapons for energy? Please share!!
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. 😉
I planned on doing this post for a few weeks and I still forgot my after picture on Thanksgiving guys but thank goodness I had 2 Thanksgivings this year. These posts were already put on my Instagram and Facebook. I wanted to share them with my Blog people though.
This is me. How do I look? Happy? Sad? In pain? Lonely? Depressed? Fatigued? I actually look like I have it all together in this pic except I am in sweats in bed and 20 minutes late. I am struggling guys. I have a UTI that I have been fighting for over a week and now (TMI) a girlie infection from that. My body is so over it and I started a flare yesterday. Everything hurts. And I mean everything. My hair. My eyelashes. Everything. I only slept like 4 hours last night so I am emotionally shot too. I am struggling. I need to get vertical. I need to go socialize and talk and eat and have a good time. But I am struggling. How do you guys handle it when you have a big occasion and you have a big flare? Give me some tips. I think I will eat pie.
What I did was sit on the couch on my heating pads and try not to cry until food was ready and then after we ate I sat on couch for 30 minutes and I was out of there and home to die. I forgot my after picture because I was in no shape to take one. I slept forever and woke up feeling decent and my boy dragged me out shopping on Black Friday. Then brought the grandbaby home with me to nap. My friend came over to put up my Christmas which I watched her and the grandbaby do and then I got ready and we went to Thanksgiving #2. A busy but not crazy day. Here is post 2.
This is the effects of a 2.5 hour party. Not really a party. Low key dinner with family. I didn’t even have to cook or clean. Just sit around playing with the grandbaby and visiting. I had a great time. I had been looking forward to it all week. Then I came home and the moment I laid on the bed it all hit me. Exhaustion, pain, headache, that bone deep weariness. I slept roughly 10 hours. I guess I don’t know what kept me going but we spoonies need to come up with a name for it. That thing that gets you through the holiday dinner or birthday party. That thing that let’s you answer “Fine!” So many times when you aren’t fine. That thing I just can’t put my finger on. Is it just sheer power of will? Is it determination? I don’t know. What do you guys think it is? Is it more than one thing? Is it different things on different days? Tell me what you think!