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.
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.
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…
Today I read a message that was sent to me and it like many others I’ve received. It’s full of hope about being “cured” about making life better, having a life without pain. The funny thing is I’m not in pain right now as I’m writing this but like any other day that could change at any moment. I wanted to share the message with you all and share my response. I hope I do not offend the person who sent me the message but I dislike people who send me messages of wanting to talk to me about something that will fix me, as if I’m broken. Well they stated that it’s something that will give me my life back. The one problem with that is unlike others, this is the only life I’ve known. It hasn’t been any better or any worst. It just is what it is. Everyone with or without a chronic illness will have good and bad days, they will also want to vent or complain a bit. My life is what it is and even with chronic pain I don’t know what I would be doing differently. My pain isn’t what has stopped me, many other factors in my life have kept me from succeeding. I was on a downward spiral on an never ending roller-coaster and fibromyalgia forced me to stop and examine my life and realize I had many habits that needed to stop. My pain is a wake up call, a reminder of I’m still not the person I should be.
If mentally I’m the same person and I spend money to buy any and everything that could make me feel better, for how long will it work? Won’t I become depended on it? What happens if I can’t get it anymore?
I may not always be smiling and hopeful for my down days don’t last as long as they used too. Mentally I’m much stronger now than I’ve ever been. My body is forcing me to make changes but I want to be able to find a way that doesn’t have me buying some special kind of product regardless if it’s “healthy” or “natural” I have a long way to go. Financially I want to start with the basics such as the food I eat, getting enough sleep and being as active as I can. Until I’m able to get those things under control I’m not wasting money. I need free solutions for my life. I know many will argue that it’s worth it but I don’t agree. I want to just be able to buy fresh vegetables or grow my own and eat without worrying that it’s going to make me sick. I want to be able to have a drug-free life. I made it to age 33 I think I can make it many more years. (Just how I feel about my life)
Message Sent: “HI Melissa, How are you going? I kind of feel like that is a silly question as I just read your current blog (from the 10th). I wanted to connect as I have a large circle of people around me with Fibromyalgia and we have found something that has given them their lives back. Sounds crazy and impossible, I know! They all think the same things 😂 If you would like to connect, and learn more, please feel free to get in contact with me. I would love to skype/face time and find out more about you. Take care.”
My response: Hi, financially I can not buy anything to try in hopes it will magically make me feel better. The difference from me and others is, other people had a life they loved before fibromyalgia and have a point that they wish to get back to. Since I was young I’ve lived with anxiety and depression and the fibromyalgia came later, which I feel I maybe always had. I don’t have a life to get back. I just have the life that I live. I’m still here and still going, I don’t look at my pain as a life stopper, I feel it’s been a life changer for the better. It sucks and it is very painful at times but I don’t like being told that there is some fix all product. If there is why be so secret about it. Give me something to post and let everyone know about this wonderful thing that will give them there lives back. Thank you take care.