How long did it take you to figure out what to change in your life to help make you feel better?
I am still on the journey of trying to figure out what to eat, what not to eat. How does my body react to things. I’m lost and I can’t keep track. Every time I think I know, I don’t really have it. That alone is exhausting.
Being in so much discomfort and pain. You don’t want to take away everything you love. I want to be able to have those things that just make me happy, but I don’t know if those things are keeping me from being stuck in this never ending cycle.
Lately I’ve been so stressed which is not good. Random things keep happening as they always do but I’m never ready or looking forward to. For example: I’m sitting up in bed legs crisscrossed “indian style” I unfold them and notice my right foot is going numb, like it’s fallen asleep it’s tingling. Within seconds of me noticing that the same feeling moves up my entire leg and thigh. I’m freaking out because it feels weird, uncomfortable and I don’t know what’s about to happen next. What if I lose all feeing or can’t walk. I took off whatever clothing I had on just to feel free and I laid back and tried to relax. The feeling goes away at some point but I’ve never had that feeling go up my leg like that and especially with me just sitting on the bed.
I’m like I have to be mindful of so much that I do and that is one reason why I choose not to go to every family event of go everywhere in general because I’m just concerned of what or how my body may react to be being out.
Right now I have a toe that had been bothering me since yesterday and it feel the bone of the toe or joint hurts.
I’m so exhausted trying to live a life that I feel is trying to kill me. I can’t seem to get much of anything that is important to me done. My hands keep aching, I have to take breaks for that along with the fact I’m not sleeping well so I have to sleep when my body allows me to. Well I should say mind and body allows me to. Mostly by He time I fall asleep and wake up the day is almost over and I’m trying to get in as much as I can before it’s time for me to try and fall asleep again like a “normal” person.
Oh!!! I almost forgot another reason I haven’t been sleeping is because my skin as been itching so bad. I’m feeling things on me, feeing little pricks and stings. I feel like I’m losing my mind. Then seem like every time I get to sleeping really good, I have to get up to pee. 🤦♀️ trying to find balance of cold and hot is another struggle.
Of course I could go on and on…. I just don’t know if I will ever have this all figured out.
All I know is keeping negativity away and saying NO when I can’t and don’t want to do something right go somewhere. Making myself laugh more and putting time and energy into myself.
If only we could remove what was hurting us, some would be nothing but a much of body parts.
Wanting to remove my left leg and thigh from my body like a doll. Aching right where the thigh connects to the hip. Aching and stiffness in leg, down to my foot that keeps having a sharp pain, cramping and aching. I forgot about aching in my knee.
As I sit here trying to explain, it’s difficult thinking about all the different aches I’m feeling right now. It makes me sad to focus on it, even though I’m feeling it and can’t stop thinking about it because I can’t help but feel it. It has not gotten in easier trying to explain to someone how I feel.
How do you sum it up into a few words?
I go through moods of wanting to tell people how I’m feeling but feel as if I’m complaining and rather not share.
When explaining an invisible illness it can be difficult to put it in terms that can clearly be understood. Many may say they understand but they truly have no idea.
Unless you live it, you don’t get it.
Even people who live it don’t fully understand each other because each illness affects everyone differently.
Treatments that help some may not help others.
When you live with someone who is suffering you see a up close and personal view of the struggles and you neither educate yourself and be supportive or get frustrated and make the person feel even worse. It’s a difficult life to live especially when you’re still young and people look at you and don’t see sick, they see you as being healthy.
If you’re not dying or on a boat load of medication/prescription drugs they don’t believe anything’s wrong with you. When you are trying to conserve your energy and you’ve changed your life to work for you, they think you’re lazy. Think you’ve given up or not trying hard enough to get better.
People tend to not except my truth, they think it’s bullshit and I’m full of excuses.
People will never see me on the outside as I feel on the inside. They will never believe me until it’s too late.
It’s Sunday and I know I should not be worried about tomorrow but I am a bit. Part of me had a plan of calling or going up there to the job and do what I have to do to get it. The other “parts” of me Ms. Anxiety and Ms. Depression along with Queen Fibro, they have caused me to question everything. Friday day I got muscle spasms after using the bathroom. The muscle spasms lasted the rest of the day and night. I thought going to sleep, it would help relax my body, but that didn’t help at all.
Queen Fibro, she’s whispering in my ear making me question if I can really do this. Along with Ms. Anxiety questioning everything that could go wrong. How will I explain all the years I’ve been out of work. Ms. Depression is telling me to just keep working at doing my writing, crocheting or knitting.
I fear reaching out. I told myself I will wait to see if I get a phone call Monday. Hopeful that since I’ve been a assistant manager before despite being out of work for years, I will get a call for an interview.
I regret not printing out my resume but honestly, I don’t really know how much I want this. I’m so conflicted, I need money, I should have money, I fear failing, I fear being fired, I be leaving another job. I’ve done it so much in my past that what will make it different now. I’m older and in more pain now so it’s even harder to want to do it.
I want a career. I don’t want to get stuck at some job. Unlike most people I know I won’t me able to work a job and still focus on trying to build a career. All my focus will go to just trying to do that one job, which isn’t even worth it. It will put a little something in my pocket and keep people off my back about not working. It would hopefully take my guilt away.
The thing is I feel I’m still not doing it for myself despite wanting some money. Money has never been my driving force to anything.
I’m so messed up. I have to stop thinking about this now before I go into a panic attack.
Have a wonderful restful day.
For people with fibromyalgia; awareness is every day but on May 12th it’s a day for others to show their support, and for people living with this condition to proudly be noticed and acknowledged.
What are things about fibromyalgia do you want to bring awareness to today?
One important thing I want others to know for awareness is even when I’m lying or sitting, doing nothing, I am hurting or aching somewhere or all over. It’s exhausting and at times you may get a break and feel pretty good but it doesn’t last long.
Living with an invisible illness is difficult because no one wants to believe you. They see you as this beautiful person because you dress nice, hair done, maybe makeup, and have a smile. They don’t see that inside you feel like you are on fire, breaking into pieces, falling apart, screaming for help, feeling shooting pain etc.
At times I feel as if talking about it gives it power and that I should not claim it into my life, but my body reminds me that I can’t lie to myself. It’s apart of me and I don’t have control over it. Yes I’m a fighter but lately most days I don’t want to fight anymore I just want to be still and try not to feel. It’s laughable thinking I can’t feel, I feel everything.
When you speak about how you feel, they hear excuses. Some think you’re just complaining and lazy. Many keep their pain to themselves.
One of the hardest questions to answer is How are you? The easiest answer is I’m ok.
Hope you all are feeling better than me today. Today I feel so sad, crying and I’m tired. I’m tired and I haven’t even done anything. I don’t even feel like trying to explain what I’m feeling in my body right now. All day long. It’s been a tough few months. Day after day. When the new day starts I’m woke, when the day is moving along I am still, in bed trying to get sleep. By night fall I’m wide awoke again most of the time. There are times that I stay up and try to keep myself busy but with the proper rest, I feel sick.
I feel like nothing I eat or drink agrees with me. To be honest I really don’t want to eat anymore. I try to go as long as I can and not eat. I’m tried of drinking and going to the bathroom. I guess I’m just tried of what is called my life.
One of the most frustrating things are, when you’ve told your family and friends you have fibromyalgia, you have told them all the symptoms even printed them out for them to see and read. Constantly talking about it and explaining. Then when you don’t feel well and they ask what’s wrong, you tell them what you’re feeling and they ask you why are you feeling that way or what did you do. Oh how crazy it is you feel that way etc…
In that moment I feel as if no one cares and of course no one understands. The crap just happens and I don’t know why. It’s like they don’t care to keep that information in their head of What fibromyalgia does to someone. They have no clue.
No one wants to hear about how I feel but then they tell me about their aches and pains as if their pain is more relevant than mine. Don’t forget about the age. People older feel they have a right to feel the way they do and wonder what’s my reason or how, why, would be aching and joints popping, I’m too young to be feeling that way etc…
I don’t know if I’m the only one who has put on extra pounds since the symptoms of fibromyalgia kicked in. Over the past years I’ve tried, done my best to keep a workout routine and I always end up finding reasons to stop, other than the pain. I get really bored and of course not having someone to workout with, but not having someone with the same energy, attitude, and of course someone that I really like.
To other people I may not look any different and I’ve never been a skinny or slim person but I see and feel the difference. It was not just the number on the scale that bothered me. Recently my knees have been bothering me to the point I sometimes feel they will give out on me. It started with my left, and sometimes it’s my right knee. The ache or pain catches me off guard and I have to catch myself as if my leg is giving out. My breathing has gotten heavier and I give out of breath easier. If that wasn’t enough. One morning I wake up and I see my stomach, I notice streach marks on my stomach! I have not had any babies so I should not have streach marks on my stomach. I knew I had gained weight but not to that point. At this point I’m telling myself the same thing I’ve always told myself, you have to do something about this. Having depression and anxiety both make it difficult to find motivation to do anything. Clothes have gotten tighter, everything is uncomfortable and I refuse to go up a size. I will get back to where I was and hopefully go down a size.
Okay I’m rambling on, I’ll get to the point of this post. I came across this video on YouTube and the guy doing the video was a little comical which caught my attention, but also the fact it seemed easy enough. I told myself I would try it.
When I woke this morning feeling like doing nothing. Throat seemed swollen and sore. I’m trying not to gag. I had my cup of coffee then endured brushing my teeth without gagging up a lung. Afterwards, I don’t know what came over me. I made the choice in my head that I was going to try this workout. So I did.
Ok everyone I had the slowest moment in history, dumbest mistake. I get started with the workout. I open the clock app on my phone and set timer for 30 seconds but I do not look at the other columns and hit the start button and I begin to walk as fast as I can back and forth. I’m thinking to myself this is the longest 30 seconds ever, it shouldn’t be taking this long. I keep going and going. Finally the alarm sounds and I look down and I see why it took so long. It was set to 15 minutes and 30 seconds. I couldn’t believe I had did this to myself. My mind could not register that I needed to stop because it was wrong. I had a second or two when I knew something wasn’t right but my mind could not figure out why. That makes me sad and I feel like I’m losing the function to comprehend but on the positive side of things, I got a nice workout. I finished up the right way. I was to do the quick workout four times but since I had added that 15 minutes to it, I figured I would say I had done enough for now.
https://youtu.be/Zsr3LDkbM0M (here’s the link to the video)