FIBROMYALGIA IS MY LIFE UNFORTUNATELY

Well this is post number 3000, and I decided to talk about something I know about all too well.

Level 6 pain head to toe. Very stiff joints. Covered in hives. Full body itchy. I am sweating but the fan literally hurts my skin. Eyes sensitive to light. Bad headache. Bowel pain. Explosive diarrhea. Metallic taste in my mouth and my hands and feet feel freezing cold although the rest of me is feels extremely hot. Fucking love fibromyalgia. Sigh.

It has been half my life dealing with this in some form or the other. This was by far not the most pain it is given me but the widest range of other symptoms that come along with it for sure. Most of the time it is just pain and maybe the itchiness. Not yesterday.

It took 15 years to get a doctor to say to me “It’s fibromyalgia”. Until then no one knew what it was. Then the doctor I had retired suddenly due to health reasons. I was scrambling to find a new doctor and the only one taking people at the time was far across the city and not to great a human being, not to mention he did not think Fibro was a real thing, even if it is in text books.

The reality is, like most invisible disabilities people look at you on a good day when you can walk 4 blocks to the store and say, “there is nothing wrong with you”. They do not get that the walk will end up in 2 or 3 days a pain and the inability to do anything other than lay around wondering why you pushed yourself. I was lucky for a while and could walk a lot then it got worse again the last while and not it’s hard for me to make it 2 blocks to the doctors office and now and then I need a ride there.

Thank the Gods that my last doctor (the bad one) pissed me off by not being willing to refill my meds over the phone and wanted me to come in. It would have been 2 weeks and I needed then in 2 days. If I do not take my meds for 3 or 4 days, I can have serious issues from withdrawal off the one medication. A friend got me in to see her doctor and I talked to the new doctor and she became my doctor. This one knows the reality of Fibro and is a lot kinder with giving refills.

There have been times where I spent the better part of 2 days laying in bed with tears in my eyes just wanting to pass out from the pain. You cannot describe it to people, they must live it to know what it is like. Like a lot of things, I do not fully understand because I have no reference point.

I have tried a great deal of medications to deal with Fibro in the past and not one of them worked other then pot. Unfortunately, I cannot handle pot because of a mental illness I have becoming much worse when I take THC. So, I just sit here and live with it, there is no other valid option currently.

I know there are other people who have it way worse and I feel for them. One I know when they are in a bad flair cannot be left alone. There times when it can mess with their breathing. Thank the Gods I do not have that problem.

I have had several people say “Lyme disease” to me. Well I have been tested several times and that is not it, trust me. I have also had a great deal of foolish people say “this will fix it” not knowing the reality that whatever thing was wrong with them temporarily was not fibro and their fix will not work for the ones who really do have it. I have even been told “prayer will fix it” and “meditation will fix it”. All number of modern age quackery has been mentioned to me. If it were as easy as that, no one would have this disease.

With Fibro almost always comes Chronic Fatigue Syndrome (CFS). This is like when you work to much using your body and you become exhausted to the point you cannot list your arms. Now think of your entire body doing that. CFS also makes it next to impossible to think at times. There have been days where it is hard for me to even tell people what I want to say. The words will not come to mind. The fact that on most days I am rather good with communication pointless, in a flair I can hardly talk.

There is all manner of people that say, “I know I’m tired too”. No, it is not tired, it is far worse than that, I am exhausted and cannot handle feeding myself today. It is to the point at bad times getting to the bathroom causes me to be drained to the point I must lay down for 2 hours to recover. So no, your being tired a lot is not the same.

The other thing is, when the CFS is bad and I make myself do things because I literally have no one to do it for me, the fibro can flair because of it and then I will be in double hell from the pain and other things that come with it.

It is not common for a male to have Fibro and/or CFS but there are a bunch of us with fibro nun the less. The fact that I have tried to be in online support groups and literally have been ignored by the women in the group is astonishing to me. They must know what it is like to have your pain passed off as I know they have lived it. So, for them to think, “no man can suffer this” is the worst form of bullshit in my mind.

To say the least there is a lot wrong with me other than fibro. I have schizoaffective disorder, depression/anxiety disorder, bad knees, a bad back, a mutation in my neck that has left it hurting often for my entire life, cluster and migraine headaches, I am seriously plus sized and I have a bad heart. This is not to mention the extremely long list of things I am allergic to or have chemical sensitivities to. So, yeah, I am about screwed.

However, life goes on and I have not come close to the point where I want it to just end. At this time, I cannot imagine that happening. Perhaps one day it will, but it is not now. Right now, I see the beauty in this life and in this world and I am glad to be alive. My friends are better than family to me, as my actual family turned their backs on me or in the case of the good family are dead. I count even the bad days as special time to show my love to others and to give them a smile or two. I live to support them, and they keep me going.

Best wishes to you and I hope you find happiness and love in this life. Remember, you are valid even if others say you are not. You are loved even if you do not feel it. Hugs and love to you.


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