This is a BLOG written and created by Nikki Albert, who has chronic migraines with aura and fibromyalgia.
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I am not a failure
I was struggling to work. I was failing. This was making be feel worthless. A failure. And depressed. You work So damn hard to do something and you cannot function at your job, cannot concentrate, you are so fatigued mentally and physically, trying to think through the pain… that your performance seriously suffers. Then you miss work when the pain is mind-blowing level, unable to drive, unable to think, unable to move. And then you feel that profound guilt. And how much you suck.
So you go on disability, or I am trying to anyway, because my emotional stability is taking a turn down. I don’t do well when I struggle to do something I just can’t and fail. I keep pushing and fail anyway. And it crushes me. And I feel my only way out is death in the end. I wanted to not get to that point this time.
But you have these feelings like you are a failure. It is your weakness that led to all this. If you could just Push through the Pain more. And ignore those depressive thoughts. And come to work in high pain anyway. Just suffer and do it. But of course productivity would take a nose dive then. Considering the errors I made on the days they called me in anyway.
My psychologist says we have to separate ourselves from our pain. As in I am not the failure. He asked me to say something more realistic. So I said ‘My body is failing me‘ To which we laughed. He said it was more realistic to say that I tried my damnedest. I want to work. I want to have a career. Financial stability. But I just cannot because it is beyond my capacity and limits. Not that I am personally a failure, it is just beyond my pain limitations.
It made me feel better when he said it. It did. I understand it is the limitations of my body making it impossible to work. He wants me to think of the next step. How to manage my day. Ensure my depression is managed. My sleep cycle. And I replace work with something that interests me. I on the other had am thinking about the step before which is my appeal to insurance company for long term disability. I don’t understand what they believe disabled is if it isn’t FM, chronic intractable migraines and depression. But it was difficult last time. And they may deny me. The places my brain goes when I think about that are not pleasant. Can’t go on disability and can’t work? What would any depressed person think in that scenario? But I am telling myself I don’t know yet. I don’t know how it will play out. I just have to try to manage my emotions as best I can and let my doctor fight for me. And I will write my letter, which I doubt means anything to them but at least makes me feel like I can explain a little on what it feels like to me. I will try and be precise with the symptoms and impact.
Maybe it isn’t my fault. But I still feel horrible about it. It is like setting someone up for failure by placing them in a no win situation but telling them ‘they are perfectly capable of doing it’. And when they fail, of course they feel like a failure. Do that enough and of course your self-worth suffers.
There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.
__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Tender or swollen lymph nodes (glands), especiall…
When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons.
I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM…