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.
I woke up Monday morning with my right thumb hurting. I’m right handed and I use my hands a lot. The one thing I’ve been doing mostly that brought on this pain in my thumb is knitting.
This pain was new to me. I found myself trying to figure out if it was Carpal tunnel syndrome or early signs of Rheumatoid arthritis. Could it just be inflammation?
All my issues have been with my legs down to my feet. That alone was having me worry. I’ve had some issues with my hands before in the past but it has been in my fingers. To have it move to my thumb now was just, I don’t know, something else to add to the list.
The first time I had an terrible experience with my hands was with carrying a basket of clothes. I was at a apartment complex, no car, so I carried it from the apartment to the laundry building which wasn’t that far but wasn’t right around the corner either. I got inside the building and placed the basket down. Once I put it down I realize my fingers are stuck, curved in the position they were in when holding onto the basket. I start to panic a bit but luckily my husband was with me at the time. As soon as he walked in I was like, “I can’t unbend my fingers, my hands are stuck. Help me get them unstuck.”
My husband grabbed my hands one by one and kind of massaged them and they started to relax and I could move them again. I was so thankful that he was with me that day because I have no idea how long I would’ve been like that if I was alone, because I would’ve been freaking completely out and unable to relax.
That moment scared me and I knew my life was going to be full of these surprises forever now. The older I get I feel the less control I have of it.
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.
I stepped out of my comfort zone this week. A store I went into were hiring for stocking and I got an application. It’s a small dollar tree store and it really needed help. My mom and I asked if you can just get hired just to stock and they said yes. I’m hoping that this will be the first time, well I take that back the second time I can get hired not to be a cashier. I have most of my experience in retail, also was a assistant manager so I qualify for the job. The only thing is, I haven’t worked in years. I know I don’t want to handle the stress of being a cashier but being on the floor and organizing things is the part I always enjoyed.
Plus dealing with the symptoms of fibromyalgia a lot has changed with myself. Also my anxiety had gotten worse, so it’s a big step for me to have taken the application back yesterday. I drove myself, which is a big deal now. I have to wait until Monday and I will see what happens.
At least I’m making an attempt.
I just want to do something that won’t be too much stress on me and can give me a income to contribute, so I won’t feel like a waste of space or at least put a little money in my pocket.
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.
I hope that you all are feeling better than I am today.
I am just coming down from having a cold. Still dealing with that a bit. Dealing with phlegm in my throat causing me to gag and be nauseous. The other day my back starts hurting. I feel the pain when I cough mostly. Also I’ve been feeling dizziness, spinning kind of feeling since the 3rd.
Today has been so weird for me. I’ve gotten used to my body doing unexplainable things but today seemed new and different. Woke up around, I can’t even remember now what time it was. Anyways, I’m sitting up on the bed and my legs are getting that “falling asleep” feeling. Almost feeling numb and not the first time this has happened maybe the second. Then lying back down I still feel this way. In my legs down to my toes.
I also feel trembling in my body which is nothing new. Heart is racing and I’m used to that, I’m trying to calm down. Try to relax but I can’t. The only other thing to do than nothing is sleeping. I can’t relax enough to even close my eyes. I hadn’t ate all day and it’s around 6pm. So with no one to ask I have to just get up and do this myself. I make a salad and as I stand things don’t feel right at all. My hands are literally trembling. I haven’t felt trembling in my hands like this before. Holding something, I could feel it shaking. If I didn’t focus on holding it and hurry to put it down I may dropped everything I was carrying.
I didn’t feel right eating but it made the trembling stop a bit. I drunk some ginger ale and then continued to sip on water.
I spoke to my mom to tell her how I was feeling just in case. When I began to talk I noticed I felt like I almost could get my words out. That freaked me out for sure, almost started to cry but held back my tears.
Ive been so worried about getting the flu, hearing about the death count on the news has me freaking out. I worried about having a stroke or heart attack. It’s crazy. I’m trying not to make myself worse with worrying. The weather keeps changing outside. Due to the fact I live in my aunt house right now, I don’t have control over the temperature in the house. It’s an older house so I’m sure the air flow in here isn’t that great. I’m always feeling as if I’m suffocating. Hot, cold, cold, hot is what I deal with.
It’s now going on 8:30pm and I still feel numbness in my toes. Aching in my legs. It’s crazy I feel like my entire body feels like a numbness, or heaviness.
Of course having anxiety, is making it that much more difficult to relax. I’m doing my best. I’m about to survive another day though.
Peace & Love.
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…