“Wendy Shear: Am I missing something? I have had fibromyalgia for over 10 years. You muddle along as you would in any job. (Yesterday at 8:41pm)”
That was posted on Facebook yesterday by someone who knows someone else – she doesn’t actually know me. As I began typing a response on FB I realized it was going to be rather long so instead – I shall blog!
(btw: I hate the word blog… I need to come up with another word for my own little universe).
I’m glad that your pain levels are low enough that you can hold an 8 hour shift on your feet hauling and rearranging coffee-table books in the Bargain Section without having to go to the ER – Perhaps you missed the part where I mentioned the Vicodin Dosage (4000 – 6000 mgs) a day for over 5 years… And no, before you say – “well that’s because you’re an addict” – I’m not an addict – Ask my doctors, who are impressed as hell that I just stopped taking them cold, 2 months ago, because the side effects weren’t worth the few hours of pain relief. I’ve been taking that blessed opiate for just over 7 years (the first 2 years my tolerance remained within normal levels) – however, whence your tolerance adjusts and you need to take 4000 mgs just to get through a work shift, your body goes into immediate withdrawal the second the drug has passed through your system… So that means everyday is like the first day of rehab – convulsions, vomiting, toileting, sweating, cramping, weakness… every morning – now you tell me exactly what your definition of “muddling” is – because let me tell you my friend, I’ve been muddling through this ridiculous pain for over 10 years and that is why I’ve had to take the Vicodin – because NO ONE KNEW WHAT WAS CAUSING THE PAIN…. My doctors were stumped and had run every test they could think of… Not RA, Not a Lyme Relapse (which I’ve been infected with on 3 separate occasions) – Let me ask you, Wendy, does your elbow feel like it’s going to break and burn when you lift a coffee mug? Do your feet feel like someone has broken every bone in them and exposed every nerve casing surrounding those bones and the shrapnel that was your phalanges is now slicing through those exposed nerves? Do your wrists feel as though someone is trying to drive a metal spike through them? Can you feel each one of the bones in your fingers as you type? Well, as you may have guessed, I have. So congrats to you for feeling that you are tougher and stronger than me. Here’s your medal. But I’ve got news for you – when your doctors tell you that the pain scale they use no longer applies to you because your pain tolerance throws it off since your pain starts at 9 or 10 on a regular basis, I’m going to go with the thought I’m a fucking champion “muddler” and I’m through “muddling” – I actually want to DO something – I want to follow a passion and work in a field that consumes me so much that I don’t have time to think about how much I hurt and how sore I’ll be when I stop moving. We are not all the same and FYI fibromyalgia is not quite a disease, it’s still a theory… So the hundreds of people afflicted with it may have hundreds of different sensations and pains. Just because you have been diagnosed doesn’t make you an expert on anyone other than yourself. I’m the queen of ‘suck it up and deal’ and have been since the first time I was diagnosed with Lyme Disease (after already having it for 6 months and was approaching the 3rd phase). Since that day (when I was 13) I have not had one single day without high levels pain. So boohoo for me… Call the fucking wahmbulance.
This is the first time in my life where I am taking the time out to actually address the medical issues at hand. I do not believe that is it fair of me to ask an employer to put up with me having to go to numerous doctors appointments and deal with me having to call out if a day is particularly bad – in this economy employers are working with skeleton crews and call-outs effect everyone and piss people off. It’s completely inconsiderate of you as a person to seek employment knowing full well you will not be able to fulfill your job requirements. So until I can get on my feet – literally – I will be using the Unemployment System – because THAT’S WHY ITS THERE. I’ve worked my entire adult life ( starting at 15 yrs ) so I have every right to do what’s right by me because, unfortunately, this body is all I have and since I can’t trade the damn thing in I have to figure out how to make it work and last as long as possible.
Anyone else want to judge me? Anyone else want to discredit my personal experiences?
By the By: If the Mayans are right only I only have to put up with this for another 2 years.