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?
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. 😉
Guys, I mean guys, I am so honored. This weekend I reached 700 followers on Instagram. Thank you! Thank you! Thank you! It just blows my mind. Not only does that mean that there are 700 people with nothing better to do than read my posts (kidding) but just think a minute…. those are 700 people who have a chronic illness or who love someone with a chronic illness. Minus the ones who just wanna see cute pictures of Princess Sophie of course!! Seriously though, I want to thank each and every one of you for sharing this journey with me and I hope that I have helped you in some small way at some point. Whether I made you laugh or cry or say, “Yes, me too!” and feel not quite so alone….. I am glad that I can be here for you. I am always available by DM if you need someone to talk to. I know how isolated you can feel. I know how sometimes you just feel like giving up. So message me if you need someone to talk to. Or if you have specific questions. I hope to do more informational posts in the future. I just feel like there are so many of those out there and I prefer to let you see what life with fibro is really like and try to lend support to you when you need it. Try to make you laugh. Try to inspire you. Don’t forget. WE are WARRIORS!!!