Let’s talk about Unsupportive Family…

Well how do you even begin to talk about family the does not support you or your illness? How do you face each day knowing in my case my mother could care less about any pain I’m in or about my life or for my children or my husband in any way shape or form. We have no relationship whatsoever. We don’t speak we don’t live near each other we don’t send emails to each other anymore we don’t call each other the relationship is over. It’s just me my family and my brother.

You know I haven’t talked about it yet but briefly I will go into the 2010 surgery. I went into surgery feeling pretty OK about everything. When you go under you really go under you don’t remember anything you don’t have any dreams I don’t recall nothing at all. And I think that’s a blessing because as it turns out I almost died on the table. A surgery that was supposed to take 4 hours maximum took 10 hours and a life saving surgery at that. I spent 12 days in ICU with touching go not knowing if I would live or not, but I don’t remember it. All I remember is severe pain in my hands. Not knowing until 3 months later it was nerve damage that made my fibromyalgia much much worse.

Anyway I mention this because it was a very serious surgery and I can honestly tell you that no one was there except some friends and especially people from my religious congregation. They stood by me they took care of me they spoke to the doctors on my behalf. But to say a family member was there I will have to say no. Does this hurt me? Hack yeah. It hurt real bad when I figured it all out later.

Anyway here we are 9 years later and I’m in some prettied badd shape. As you know if you follow my blog I have severe fibromyalgia. I have P TSD. I’m being re evaluated for bipolar and I have severe depression.

Ironically I have a pretty darn good attitude when it comes to being around family. My husband’s family, his aunt & cousins, etc. pretty compassionate and have a lot of empathy for me. They’re very understanding and don’t make me feel like I’m dead weight to my husband.

I think what hurts the most for me is there was a lot of trust at 1 time with certain family members from my family and from my husband’s family and just for the record my brother is amazing and lives far but eventually came and picked us up and we stayed at his house for 6 months to be cared for.

But if you ask me if anybody else came I can tell you no. I also did not receive any phone calls from anybody. It was probably one of the most loneliest and hurtful times of my life. I always try to put my best out even though I’m in a lot of pain I try not to show it but because we live far my husband will mention that I may be having a really bad day. For a while he just felt that certain family members finally understood that illness comes in different stages for different people. And I guess what is so hurtful to me is that when they don’t understand I am at the point where I could care less anymore, sure it hurts, but I get over it a lot faster than I used to. My family, meh. I have amazing cousins & & as I previously mentioned my brother is amazing. My husband, it goes without saying he is my rock after my God of course, but he truly is my champion.

Why oh why don’t people realize that they are hurting his feelings when they talk about me? When they slyly admit to the fact that I’m not doing enough to get better. The recommendations, the examples of others who have over came some Invisable Illnesses. He tries to explain we’ve tried it all & are doing the best we can with my nerve damage, fibromyalgia, flare ups, & spinal cord injury. (I can walk, but it was compromised in the surgery. )

Why do they get so mad that he doesn’t take their advise?? Why o why don’t the realize that I have done everything possible not to show my pain when visiting but in the comfort of my home i can feel like I can get comfortable.

I don’t get it. I guess I’m just hurt for my husband because his feelings are hurt because i am disliked & no one believes I’m that sick or have as much pain as I have. I just feel anger right now. I’m just so done with friends, family & anyone who questions my illness & anyone who hurts my husbands feelings.

I have now officially alienated myself in the future. My husband supports my decision & understands. He didn’t want to for the longest. But he does now & although he’s always been on my side about things I truly feel he has 100% understanding of what I’ve been going through for over 9 years.

I don’t even know if this blog makes sense today, I’m just si crushed for my husband.😭

We did have a nice day today, went to our religious service, enjoyed true & wonderful friendships, had some amazing home made Pozole (by my hubby). So I’m feeling better. I think talking about here on this forum, well, it really helps.

Thanks for stopping by & showing your support, your all amazing people.

Yvonne

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Let’s talk a little about fibro…

PLEASE KNOW I AM NOT A DOCTOR NOR DO I GIVE MEDICAL ADVISE. I AM SIMPLY A SUFFERER WHO WANTS TO SHARE WHAT I LEARNED ABOUT MY INVISABLE ILLNESSES. I WILL NEVER GIVE RECOMENDATIONS ON MEDICATION BUT SHARE WHAT I HAVE USED THROUGH THE YEARS.

Well I wanted to take a little time to talk about fibromyalgia. I am a definite suffer a fibro amongst other things but let’s keep on point. As we get to know each other you’ll notice that I’m easily thrown off track. All part of the whole memory issues that come with fibromyalgia.

Now for those of you who have a loved one or those of you that have fibromyalgia and doctors don’t believe you or maybe you have fibro but don’t know the general definition of it I’d like to give you an idea what I’ve learned about Fibromyalgia.

In my experience & research I’ve found Fibromyalgia is a pain that moves around your body. It picks a spot, you feel some intense pain, supposedly it will “just pass” and then it will just move to another spot. Now I can attest to this because I have pain all over. Most recently it has settled in my knee and it didn’t just pick the spot and then a few hours later it went away. But at times can pass. But for me, it just goes elsewhere and if it doesn’t pass it goes elsewhere and then also just stays put with its other buddies in my body😡.

Now you can try to pretend that you’re not hurting and you can try to cry it out or just cry because you hurt, I’ve done it all. But I’ve learned that we have to learn how to live with this pain. Don’t get me wrong for some of you that are reading this, I get it. The pain is real, the pain is there and the pain is not in your mind. It takes your pain to places you never thought possible. I’d like to also add that fibromyalgia is commonly known mostly for women, but I’d like to share that there are a percentage of men that do suffer from fibromyalgia. So I don’t want to discount any of my male readers. This is not only for women it’s for everybody who suffers from this debilitating disease or relatable Invisable Illnesses.😥

Until I started really researching fibromyalgia I couldn’t understand why am I so tired why can’t I sleep? Why do I all of a sudden feel a surge of energy where I can do so much within a couple of hours but then I pay for it so badly later. Going to do something even fun and recreational can keep me down for a good week. Sometimes you feel numb you can’t stand being in the cold (this doesn’t happen for me, I am always hot) or the worst is when your muscles get in a knot, my fingers get into a horrible twisted painful situation that feels like someone banged them or slammed them in the door on accident or something. The wonderful thing, and I say this in a sarcastic way hahaha, is you get headaches. I suffer from migraines so it’s a double whammy. A lot of times you fantasize and you run away in music and that’s something I do. Music is a huge part of my life. I used to watch a ton of TV, I still do but I’ve started noticing that music is playing a bigger part in my life then before. So if you suffer from these things just know you’re not alone.

One thing to remember and maybe people who have a loved one who suffers from fibromyalgia that’s very very debilitating for them is please be patient and know that sometimes these flare-ups do not last a couple of hours or for the day they can last a week several weeks and sometimes it’s a month or more. That’s where depression can come in but that’s on another day I’ll discuss that.

One of the things is I’ve gone to many doctors and I tell you there are so many that don’t believe in this illness. But I don’t want you to be frustrated because there will be one they will believe you. And furthermore those friends and family who mean well need to understand that our Invisible Illness(s) is more real than their imaginary medical expertise.

I also want to say to those who like to give the dirty looks to someone in their 20s 30s 40s, I personally am 54, and have a disability placard for parking, that not every disability is visible. You need to be kind. You never know what kind of struggle a person is going through. You’re a stranger to us, we don’t need a stranger judging us. We get enough of that thank you very much.

Another aspect of fibromyalgia and I guess you can say myths about it is it people think we’re lazy. Just because I have fibromyalgia it doesn’t mean I don’t take care of myself it doesn’t mean I don’t want to exercise and I’m not making up any symptoms. What it means is I push myself constantly and really don’t want to live this way but I don’t have a choice. 🤷‍♀️

So rather than let people beat me down like I have in the past, I’ve decided to stand up hold my head up high and say if you don’t believe me I’m okay with that.😤 I just don’t want your medical advice.🤐 I don’t want to hear about your cousin that has fibro and works 72 hours a week. 🤐

I don’t know if any of you’ve encountered this but I know that one day I went to the eye doctor. Mind you, I had canceled a few appointments due to fibro flare. It seems to settle in my feet a lot which by the way, yes fibro can get in your feet. In any event, I made it to my appointment finally 🤗 and the assistant to the doctor was doing her little PreCheck up thing and I’m an extremely friendly person, pain or no pain, depression or no depression (I feel like I’m a great pretender to the outside world😎) I try to give the best of myself, and I apologized about missing my appointments and that I suffer from fibromyalgia and it’s very debilitating at times. And on top of that (which is another topic for later) but just so you know I suffer from nerve damage, from a surgery gone wrong (surgery had nothing to do with my back!). So I briefly said that to her and I had a flare up and just could not make it. It’s very up-and-down for me to try to make plans or anyting. In any event she told me “oh I have fibromyalgia too! But I work 40 hours.🙄 I just push through it and I exercise🏃‍♀️ and I do so much with stretching and eating right🤐(meanwhile I am telling myself “dont throw your sandal at her, don’t be rude or inconsiderate😖) I’m assuming she threw in the eating right part because yes, I’m a little overweight. Do I like it? No! Would I like to change it? Heck yeah, everyday I try to change it. You’d be surprised at the minimal calories I do eat. But as any who have suffered from this well know medication side affects can be brutal. Those lovely side effects, ahh, yes. Not everyone has problems with weight gain, but please note, to some it does.😎

Well as previously mentioned I went off track. Well after she told me that she had fibromyalgia I explained to her that I was very happy that her fibro was not as severe is mine and that I did have a surgery & in most sufferers I have spoken with as well as my doctors who believe me, trauma to your body will make your fibromyalgia worse. Yes, this I learned the hard way. Again for another day to explain this.

Well she just wanted to act like she was superior to me, which hey if you know so much about Fibromyalgia, power to you👏👌, but if you did know so much about it then you would know that there are people like me who suffer so badly that getting up and taking a shower was the biggest accomplishment of the day🤸‍♀️. But no, she was in Tip-Top shape and as the doctor came in and started to examine me she started doing squats in front of me🤣. I tell you🙃. It took everything in me not to crack up completely.🤣😂 So if you’re out there my little eye examine assistant and you’re reading this, if you feel you have fibromyalgia or the doctor told you that you have fibromyalgia do a little research. Listen to what others have said about it. Join some blogs. Because that’s what I did. Take note that there any many levels that people suffer.

When I first found out I had fibromyalgia I too was in much better physical health and weight and my energy was great. But I had a great trauma in 2010 and I’ve never been the same. It was life-changing. So my friends out there that suffer, I’m here. I love to listen, and I love to talk and encourage. I take this blog very serious in teaching or enlightening about people who suffer from invisible illnesses.

Fibromyalgia is just one of them and today is Thursday & I’m surprosed to go out tonight, but don’t think I’ll make it. Yeah I’m in pain but I take great joy and being able to help somebody else not feel alone in their pain.💜🌷

I hope I’ve explained fibromyalgia sprinkled heavily with my life 😂. If I’ve missed anything please chime in. I’m always willing to learn more, always wanting to learn more. So you all have a wonderful day. Soft gentle hugs,💜 Yvonne

A new day…

Well today is Thursday and I’m attempting to help my husband with a lot of paperwork but the overwhelming weight of confusion that depression brings me it’s very frustrating. Today is one of those days I wanna crawl in bed and just watch TV and just not be bugged. But I’ve learned in the past that that does not help and it actually makes my depression worse. It doesn’t help that I have a nice new fibromyalgia , As I say that in are sarcastic tone, lol. Sometimes I wish I could just wake up and feel like when I was 30 years old and I felt such a bright future I felt so healthy add I had a bigger measure of happiness. I can honestly say that my greatest joy to focus on is 1st and foremost my husband. Sometimes I see what I put him through their hurts my heart so I can’t think of it because it spiral me down further. So I accept his supportivness because I know it’s a gesture of love. He is the embodiment of the wedding vows: for better or worse, for richer or poorer and the biggest one and sickness and and health.

So I decided to get on here and share what the day has been like it’s a quarter to one California time and the day is still not going my way. Getting ready to take a bubble bath in the hope that my body will feel better I not feel so much pain. My feet hurt so much. I don’t know it’s just a very irritating day to me. I can’t figure it out. I guess I have was called the Fibro Fog.

Have any of you felt this way? Well I gotta get on with my day. But I may be back with any update. Thanks for “hearing” me out.😭 Yvonne

A little bit about me…

Hi my name is Yvonne. I am starting this blog to share awareness about invisible illnesses such as what I suffer from fibromyalgia and bipolar disorder amongst other things. PLEASE NOTE: I AM NOT A DOCTOR NOR DO I GIVE OUT OFFICIAL  MEDICAL ADVICE. I WILL BE DISCUSSING MY PERSONAL EXPERIENCES AND OTHERS I’VE READ.

I also want to share my journey in living with these invisible illnesses that people can’t see and sometimes can’t understand even doctors who can’t understand. So as I go through my journey I will also be discussing things like what I feel in my past has led up to having depression and also what happened to me that intensified my fibromyalgia into the most spiraling pain I’ve ever thought I could have on a daily basis.

I also look forward to hearing your feedback as well as hearing your stories and your Journeys your hopes and your joys because that’s what I will be sharing with you. So there will be up’s & there will be downs but I do want to share them all because this is living with fibromyalgia and depression and how I go about my life.

So I hope you enjoy my blog and will visit it often I look forward to getting to know you all who suffer the same ailments.

Sending warm gentle hugs,
Yvonne