End of year reflections: How am I doing.

How am I doing?

It is difficult to say one way or the other. The chronic migraines have not improved in the least. I spent a great deal of time simply waiting to see a neuro. So not a great deal could be done in that span of time. However, I have been seeing my psychologist and trying the relaxation techniques and biofeedback. So not complete stagnation on the progress front. At least I felt like I was trying something. And I did see the neuro at the very, very end of the year.

However to say the migraines have not changed in the least does not mean it was a wasted year. In some ways it sort of feels that way but it wasn't. In the beginning I had tremendous anxiety about the thought of returning to work. For many valid reasons. With no change to the migraines you feel like you will inevitably end up where you were, and where you were was a very unpleasant place to be. And that is what always had happened in the past. Short term leave. Return to work. Same thing over and over again. Except now of course I had that anxiety because I knew what failure means when your pain exceeds your coping... and that is dangerous. I simply cannot trust myself to want to survive under those conditions, so I was pretty anxious about being forced into them again. So you feel like to progress is made but you are also just sort of treading water... might sink but hopefully someone will realize it would be a good idea to give you a break so you don't drown.

I also didn't feel great about not working either, whether it was good for my survival or not. There is a loss of self-worth that goes with that. A lot of guilt. Loss of income. Financial instability. It may never have been fun to cope with chronic pain but I was damn proud that I had maintained my capacity to function with it on some level and one main level was the work level. Not so much a social level, that diminished as the pain increased, but a work one. And there was a point when while the pain was quite bad, and likely should have been managed properly or doctors should have considered alternatives, at that point even, I had the capacity to hold onto a job. Not the career I had intended. But a job nonetheless. It was always a really fine balance though because I had a jobs where I was told by doctors that I could no longer work them... period. Had jobs I could not work because of the FM, when I was younger, so those types were out of the question. It was just a specific sort I could in fact do. And the migraines sort of were out of control so if any factor changed even slightly things were just thrown even worse out of whack. It was in fact how I got my last job. I had been working one, managing on that fine line, until the lack of flexibility in the hours due to new management became an issue and the migraines went from extremely frequent to daily. And that led to a medical leave of absence. Because I knew that new manager was that inflexible I began looking while on leave for a desk job with no variable hours... just consistent hours, same days a week... that 9-5 gig. I found it and that is how I found the job that led to all this mess. Because while they knew I had chronic migraines, knew why I chose that job specifically... they were as bad as many companies when it comes to every accommodating any medical issue, unless forced to, and then only as long as they are forced to. Not even simple things. Quite sad really. I think a lot of people with chronic migraines would be working right now if their previous employers simply did some simple accommodations and wanted to help motivate that person to work the best they could with the disability they have... instead of against them in every way possible, while making them feel horrific. Whatever the case may be, employers clearly see things differently. Some are awesome. Some are not. I have worked on both ends of the spectrum.

I do know, however, that no matter how much you value you job, like your job, enjoy the people you work with... when the migraines become daily without some sort of compromise you are not going to be able to function properly and you are going to miss too many days. Unless you have a good rescue medication you can use more often than neuros recommend generally, which I assure you, I did not and most people do not. So no pain control, low functionality.  What then happens is you slip from barely managing to hold a job to not being able to at all... but still doing it for a bit, until something just breaks. And you still manage to feel guilty about that when a) you never had proper pain management for chronic migraines Before they got to the point where no human could possibly work with that amount of pain and survive intact. Which would be what should be done. Way before the pain becomes suicidally Insane. b) you never had a proper rescue medication when the chronic migraines became daily and you were working full time, and it was quite obvious everyone expects this to be Possible somehow... but how without any pain management or pain killers and only the Possibility of treating 3 migraines in 7 days of the week? Possibility not actuality, and c) your employer doesn't do a thing to accommodate your disability in small or large ways, but does things to make it worse in meaningful ways by making you feel guilty for being ill, threatening you, giving you ultimatums... that sort of deal, which increase stress, depression, suicidal ideation. Yet, you feel guilty for not being able to work.

It takes a bit to sort through that. To sort through what happened. To deal with the anxiety about the potential for returning to work. While at the same time dealing with the guilt about not working. Dealing with the loss of functionality. The feeling of stagnation. The loss of self-worth. Trying to fill the void and replace it with meaningful things. Adjust how you think about yourself as well. Understand that your wellbeing Means something. That your self-worth is not tied up in what you do. And what was done, what your employer made you feel like wasn't true. You should never feel guilty about being ill. I know I tried my damndest at work every damn day I was there. I liked my job and my customers and what I did. And no matter how much pain I was in I wanted to do a damn good job. It frustrated me to no end when the pain or the cognitive issues or the auras interfered with my capacity to function or caused errors or messed with my communication skills. But no one would argue that despite that when I was there I still did well enough. And of course the fact some acute migraines were literally impossible to work with, and that meant statistically I had a lot of missed days, which meant I really was not functional. But that does not mean I am worthless. That means I worked all the time with migraines. Many of them acute. With very little pain control. And taking a triptan often made me brain dead, even the times when it Didn't abort the migraine... so it was often a lose lose situation. So it is just wrong to make someone feel horrible about missing work for when the Really have no capacity to function, when that is the effort they put in every single day. I understand the employers point of view, but it is still very wrong to imply they should feel wrong for being ill. And threats are by far worse. Because you have already made them feel quite bad, all the time. They do not feel stable in their job now, because they feel threatened. And then you give them ultimatums they feel they Must comply with. It was a recipe for disaster in my place. I suspect they do it in hopes people will quit. But most of us, we will not quit. We must tolerate the pain, right? We must. There are no options. So backing us in a corner, is not a good idea. So I think reflecting on that I accept that I should not feel guilty for being ill, should never have let someone else even let me think that for a moment. But also that I should have accepted my limitations sooner. I do in all else when it comes to chronic pain. Yet in this case I could not accept how this situation was unhealthy and was clearly too much pain to handle. I understood the pain was not managed but I figured I could push through it until... something changed. But it never did and my employer never did anything to help while I was trying to get my neuros to help, so it was a compounding situation of no help. Crapola.

It is anyone's fault? Or everyone's fault? Who cares really. I know my family has no love for my employer. Who would? I know I had no fond memories either. I do know I do not think about my old work place anymore. When i walk in there for something it doesn't bother me anymore. I have finally let all of that go. I know the rehabilitation specialist I spoke with said that while it was clear to him I was not capable of working right now... if the time came when i was capable of it, he didn't believe I ought to return to that employer. First, because of the lack of accommodation. He does not think the industry is known for it. Or likely to give it. Even if I were to suggest things, as I actually had. He wasn't at all surprised they had declined everything I had mentioned. Also he said he believed given my education, training and so forth I had the capacity to find something better. Made me chuckle. The industry isn't known for paying well, even though they do require a lot from their employees they certainly do not pay them well. I get that, but at the time... I had been looking for a desk job. And third, he believed quite rightly that it would be of no benefit to me to return to what he considered to be an unhealthy enviroment. That the stress alone was a factor in the situation. Of course it was. But that is in the future. Nevertheless, I believe he is quite right about that.

I did like talking to that rehabilitation specialist by the way. Made me feel like while right Now I may not be able to function it does not mean it will be the case forever. And when it Isn't the case, he will help me get back in order. I don't like the stagnation of not working. So I like the concept of working again. I just need the pain to be a little less than it is now. Back to where it was when I had the capacity to work... barely. Because if I can get it to There, plus have some sort of pain management that would be better than Here. I have some optimism about that even if I don't know how to get there. But optimism is a good thing. Have not had that in a long time. However, having a pain psychologist over the last while has helped. My new neuro is a good start. I liked him. Liked his knowledge base. His approach. I have hope that I can work with him. I also will be going to a pain clinic soon. I also in the last year finally have a good doctor who listens and is quite intelligent and methodical. All these things combined make me believe I might get some progress. Any progress is better than where I am now.

And again while the migraine frequency has not changed there have been differences. My mood is a little better because I have been trying to do specific things to improve it as well as doing the relaxation techniques. When it does get bad I utilize some distraction techniques and that seems to work. I have less status migraines because while my sleep is very erratic, I do get more than when I am working... so if a migraine last night prevents me from getting to sleep till dawn, I can still get sleep (rather than having to get up and having that migraine persist for another day). Status migraines cause very bad mood swings, sleep deprivation and they are dangerous. So not having as many of those is a very good thing. I have also been slowly socializing outside of the home to go and play cards a couple times a month as I am told this also helps with mood. Also gets me out of the house, and I am told I should do this as well once in a while.

I have been exercising. Earlier in the year not successfully since I injured my back which led to an MRI. So now more carefully. Still at a mild level. But the neuro has a rehabilitation chronic pain clinic that will help with that venture. Once we see if we can get a handle on the vertigo. Clearly I have not really had any success with it, exercise that is. I also have no control over the vertigo. So I do hope that medication helps on that end of things.

And I have been writing fiction and not fiction. Running my Making Invisible Disabilities Visible Page as well as helping with Content on Migraineur Misfits and being an Admin there. Blogging on here of course as well. And all of these have helped me fill my time with something that is important to me. They are meaningful to me.

So I feel better about myself. Less anxiety now that my leave is extended. Optimistic about treatment. But I also feel very fatigued from my new medication. Hoping it helps with the vertigo, but hoping the fatigue will level off.

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