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A Response to a message: "Maybe you should refrain from texting about your illness. Why can you just talk about fun stuff?" Why I talk about Fibromylica
Greetings all, Shardvixen here;
I know I don't do enough blogs but I got my new laptop, so I am going to make it a thing that I write at least for one night a week.
The other day I got a message from a follower on Twitter suggesting to me, that I should maybe not talk about my fibromylica and if you all know anything about me, this response is exactly how I would answer them. I was going to type this in the message but decided I would rather address it globally. So here we go. All the ideas wrtten here unless stated otherwhise; are my own opinions.
I am a rather healthy being if we take away my mental health issues and the fibromylica. The only other thing I have which is a bit scary is Tay–Sachs disease. Look at the end of this for the side note about that.
As far as my talking about Fibromylica, I do so because of a few good reasons. One being that it is very disabling for me. It effects every thing I do 24/7 for all of my life and I just learn about it recently in the last five years. It effects how I do daily chores like brushing my hair, getting dressed, what I can eat, how active I am and how well I sleep.
I also learned I have been dignosed with Somatic Disorder https://www.mayoclinic.org/diseases-conditions/somatic-symptom-disorder/symptoms-causes/syc-20377776 At first I had a hard time with this till I relized, that this was most of my life. The thing is the Somtic Disorder is a lot like Fibromylica and some of the symptoms are alike, so it seems it would be hard to seperate them at this point. But understanding how medical professionals look at me is always useful and I am very interested in how to make my life better (has been my goal since I was 18 years old). Also the Somatic makes it hard to know when I am really sick as does the Fibromylica. Both can be managed by behavioral cognitive disorder. But while Somatic Disorder can be cured, Fibromylica can not. This is why I speak of it. By making it real and knowing that every day I need to do what I must to help maintaine a good lifestyle is helpful in being able to have some control in my life.
There is some research that has been done between the coorlation of Somatic Disorder and Fibromylica but nothing new. Here is one articl I found if you are curious about it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3925165/
The why this is important to me is because when does the mental health issues become more of the problem then the actual physical pain issus and then given the fact that no one still knows what causes Fibro, could my fibro just be a symptom of my Somatic which I must ask myself and just looks like Fibro. This question spurs me to understand both issues along with my other mental health issues of depression, anxiety, PTSD and Borderline Personality Disorder. All of which will one day be discussed in a special animation vlog, I am currently working on.
Two: Mental Health seems to be a compenant of Fibromylica. Sometimes it can be overlooked and not treated or it gets lumped in with Fibromylica and the meds used to treat the Fibromylica are used to deal with the mental health issues. With the Somatic Disorder and the Fibromylica, I am very senstice to meds to the point, that one set started me down the road to suicide(if this triggers you, please call someone. It is ok to be trigger, but it is important to realize it is happening. Pain can be a big factor in wanting to leave this world) Because Fibromylica is wrapped up tight in mental health issues(which by the way needs all the advocates it an ge as an disabling handicap as well), being an advocate for it and mental health is very important.
Ask yourself how many people do you know with Fibromylica and do they have mental health issues too. How much do you know about Fibromylica. Even though there is research out there about it, I have found only a handful of medical people who read the research. This is because even though studies are being done about Fibromylica, it is all about looking for the "why" of it and "how to cure it". Another question to ask, is what do you think about Fibromylica. Do you think it is a real disorder or are those who have it just think we are ill because of our mental health issues? Also how do you feel about mental health issues?
Fibromylcia has been around a lot longer then a lot of people think, but it is only recently that doctors will dignose it and only after ruling out every thing else. https://www.healthline.com/health/fibromyalgia-real-or-imagined
Another of the reason I talk about it all the time; is that there is no cure, which can be very disheartening to many. But there are a lot of different treatment and a few companies that tell you they have the cure. But the reality is, you have to find a treatment plan that works for you and never, ever come off of it. That is how you "cure " it. If the attacks don't seem to happen, then it must be gone. I watched youtube creator who stated they had found the cure and for five years had gotten back their old "normal ' life. Then it came back and for a while this person struggled to figure it out why. They eventually realized that while they stayed on the "treatment" they were cured but if they moved off of it they were uncured. For the most part this is how biologal depression is. If you find the right treatment, then your life will be grand until a stressor shows up to knock you around. I say biological because there are many kinds of depression, some can be situational and others can be caused by a chemical inbalance in one's brain. Sometimes you can have both.
I personally figure it the treatment cost you and you can't do it on your own, then it may not be a good treatment. What is known about treatments are either they are biological in nature and effect the biological part of the illness or they are cognativlly in nature and you need to accept it in your brain and believe in it. For any treatment to work a little of both may be needed. The problem here for fibromylica is the cause is unknown, thus making most treatments band aids to help one get through life.
I quit taking meds 2 years ago and sometimes I get really bad pain, the kind that makes you want to puke and pass out from(though that is much rarer now then last year.) I quit taking them because (most likely because of the Somatic Disorder in which everything didn't work even when I tried to keep an open mind and because of the Fibromylica which also can make things not work) . I got burning mouth so bad, it was like some one had rubbed "Icey Hot" all over my mouth and inside. The only thing that seem to work for it was to drink or suck on really sweet things(very bad for you). I went to the doctor and once again was told that it could be because of anything but was most likely because of the Fibromylica, it is just another symptoms that is part of it.
The talk about Fibromylica is mostly from those who experinces it but may not have the education. Those doctors I have found who talk about it are also one that share their "treatments" for it. I try to read as much research I can find about it. This is a good site for it: https://fedupwithfatigue.com/new-fibromyalgia-research-march-2020/
For me, I researched the best treatment for me which a three item one. Food/diet, Exercise and Behavior Cognitive therapy. I have been working hard on the first two but haven't found a therapist as of yet who does behavior Cognitive Therapy that will take my insurance. The research shows that this is the best plan for fibro, so I have been working on it. I have found a change in my attacks, though I still get them just not as terrible as they once were. I am rarely in bed for three days at a time though I still get days where I am moving slowly and spend some time in bed. I find I sometimes fall down in a black hole and it makes it hard to stay on my diet, and do exercise and work on better coping skills.
I talk about my illness because there might be others out there who are just starting their path, for those who feel like no one understands and for those who have already walked this path. The more we know the better it is for us all. The more we push for more understanding the better it will be down the road.
We live in a world where every thing is compared against another. We compare our kids and how well they are doing, we compare the places we live and who has the better water, weather and land prices. We compare our jobs, our schools, our cars and pets. And we compare our health. We really need to stop all the comparison because well we are all unique and how we experience and interpete information nd events is an unique experience.
I can not compare my health with another. I refuse to say I am not as bad or as good as someone else. I only have my life and that is all I can share is how it is effecting me. What might work for me, may not work for another. Just because you can deal with bone crushing pain, doesn't mean I can and it doesn't make me less than because I can't. Or the fact that I can walk 5 or more miles in pain doesn't mean some one else can too. I know my limits and what I can or can't do and how far I can push myself. I know the things I have issues with and how to work around them for the most part. Some days of course are worst than others. I share my pain and events because they are mine and sometimes I do stupid things and other times I have achieve great success but it more about who I am and not about how what others could do.
Another reason I share is because I want to start people to think about things and question me and other things about fibro, mental illness. The only way we can find out more is to question more. I wonder if others have cognitve fog as bad as I do. I mean I forgot what I was writing here off and on. Is it hard for you to contrate, to get up, to want to do anything at all. Do you struggle with eating(either wanting to eat more of those things that make you feel good or just trying to stay on top of thing so you don't gain anymore weight) Do you have to write down things to stay on top of them. I use to keep a pain journal for when I visited my doctor, now I have a food journal(for the last year) where I put what I eat, how much I am allowed to eat, if I have exercised and how I am feeling. How much of change has Fibromylica or even any other disorder, illness or any healthcare event effected you? We need to chat with each other so we can help each other.
This is why I share about my illness and will continue to do so. If you the reader doesn't like this, then just move on because I will keep sharing about this stuff as well as the other things in my life, some of it fun and happy and some it not. I have no problem with you just moving past my posts if they upset, bore, anger or make you feel like you need to school me. Rather ask yourself why you feel this way. It is not my issue to make you feel good but rather yours to go our and find the things that make you feel the way you want. Me, I want to know more about my disorder so I can work towards a day I can wake up not in pain. To not feel like the air itself isn't a bunch of battering rams bashing my skin, that water doesn't make me itch or hurt when in it.
No matter how I look at it, having fibromylica is just how it is. I will continue to encourage others with the disorder to research and learn all they can. The same goes for my mental health. All we can do is live day by day and do the best we can for ourselves.
BTW: I am a lousy speller and sometimes my grammer even after I go through it doesn't make sense. I have a processing disorder(which I also talk about every so ofter) and I struggle with this. Even all the time going through my education(I had a lot of it and I tried to do the best I could with my writing) I only share this because I know some of my writings can drive some people nutty and some people think educated people are naturally great spellers and writers. Sorry not so. Peace all. Catch you all on the flip side and I am out of here!
SIDE NOTE: "Tay-Sachs disease is a rare inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord." https://ghr.nlm.nih.gov/condition/tay-sachs-disease#statistics This is a good site if you wish to know more. My story of this is I didn't know during my first pregnancy, only during my second one because of my age at the time. It is required for woman who are over the age of 35 who are pregnant to get genetic testing done. It really freaked me out because it is a really nasty piece of work and most people have an abortion because of how horrible it is. Both of my children are also carriers. Which is better than having it.
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