Friday, August 19, 2016

Chronic pain (Part one): What I want others to know.

I've refrained from posting anything that from posting about my current health issues on my blog because I don't know if anyone I know if any of my acquaintances that aren't trusted enough for me to be friends with them on Facebook, or upper management from my work ever looks at my blog or will find it. I'm assuming that if anyone in corporate has found it that it would have been brought up to me or one of my managers at some point. I've had ongoing issues that partially mostly has to do with my hydrocephalus, but having do with other health problems as well that has caused me to have a constant splitting headache since the end of 2010, and daily headaches for about a year and a half before that. By constant I don't mean daily or off and on, I mean it never goes away. Before anyone asks I've been seeing doctors including my neurosurgeon for the majority of the time that it's been going on. They've found at least one of the sources of it that does have to do with my Hydrocephalus, but we're having issues fixing it. I do also plan on getting back on track with some of those doctors soon, and if things still don't work out I intend on getting other opinions. So my topic today is about what I want people that I know about my chronic pain. I also hope that it helps others that have the same kind of issues, rather it's encouraging to them or it's something that they can share with others so that they can understand their pain as well. 

I've never been prescribed stronger pain meds, just low dose anti-depressants and low dose anti-seizure meds by multiple doctors to try to "fix" the problems that way. None of them have worked and the Botox treatment they tried worked enough that I couldn't really tell any difference going through the process. But I could definitely feel it when it stopped working several months later. I would be willing to constantly be going with the Botox treatment but I wasn't but the part that the insurance doesn't cover adds up really quickly, and I can't afford to keep going. So instead I take over the counter meds, usually just at work and especially on days where a lot of heavy lifting is done because I work in the produce department at a grocery store. It might not seem like a job that requires heavy lifting, but most produce boxes/containers are at least 30 pounds, and the a lot are between 45 and 60. I've gotten some slack for calling that heavy lifting from people whose jobs require to lift a lot more, but it's a lot for someone with health issues like mine and for someone that has never has a job where I have to lift 100+ pounds. It took a while to even remotely get used to lifting that much, and it helped me burn fat and gain a significant amount of muscle over time. I also assume that it works the same for lifting even heavier amounts. Back to the subject, it gets pretty obvious that I take pain killers more often than people are usually advised to , and what I keep on hand at work looks like a lot, especially considering there's some things that I don't take regularly. I've gotten slack from some coworkers about it, some that I've been open to them about my chronic pain, and others almost not at all because I'm afraid that they'll use that information against me, which has happened in the past. It's not something that is recommended to take on a regular basis, but my health problems are not normal and I've gotten the okay for all the doctors I've been seeing recently to keep on taking it that way. There is also a difference between what is commonly recommended dosage on pain killers to take on the bottle, and how much doctors will say it's okay to take if you're a chronic pain sufferer (depending on the doctor of course). I almost always take closer to the higher 2nd recommended dosage, and I'll admit that sometimes I take more than I should. The people who freak out that I take pain killers, or some others that don't usually freak out when they see me taking more than it says on the bottle to take. Also pain killers doesn't completely take away my pain, it just puts a dent in it, it just makes it more tolerable and makes me function better. 

The first year or two dealing with frequent and then chronic pain was the worse, after barely getting headaches at all for 20 years despite living with a neurological disorder my whole life. But after that in a way I got used to, of course I'll never completely get used to it, especially since considering how the last several years has gone, that it will keep on getting worse until there's something done about it. During this time I couldn't really hide my pain, and the majority of my complaining about it, either in person, or on Facebook was during this time. I started to lose friends at this point, not just because I started to have to cancel plans and slowly stop attending things outside of work, but because of all the complaining I did on social media about it. People who especially didn't understand, just saw me frequently complaining on Facebook overlooking the reason behind it. So there's some that assume that deleted me because of it, and some that were straight forward that they were sick of seeing my negative posts "every time they opened Facebook" and deleted or blocked me over it. After that time period it became in a way that I can't really explain, a different kind of pain. It's gotten worse since then, but still a different kind of pain that I don't need to complain about it as often. It also got old to me as well, complaining about something that's not going away, especially during that period of time when I wasn't really doing anything about after trying the first 2 or 3 times. I complain once in a while on Facebook, but refrain on it because I don't feel the need to complain as much as I did for years, but I get tired of the way the posts get responded to. I also don't to have it seem that I'm doing it to get attention, I do it as a way to vent. Also the greeting of "How are you?" changes with you have chronic pain, and from what I've noticed from interacting with customers at work that it happens when your life just really sucks too. It doesn't feel like a greeting to me, and definitely to others with chronic pain considering what I've learned from other chronic pain sufferers. It feels more like a question, instead of a greeting. There's some that actual want to know how someone is doing when asking that question, but even with the majority of those people "I feel like shit" or a equivalent (less obscene) response to that isn't a reasonable response. So especially someone that you don't know, which is more common when you work in customer service "good" is the only reasonable response, which is also typically the 2nd part of the greeting. I and others with chronic pain feel like we're lying to someone when we answer the question we feel like we're lying to them. If I'm talking to customer then I respond with a positive answer, which still might not always be good. But if I'm talking to someone that I know, again it's usually at work when I'm asked that question I tend to skip answering then ask them how they are instead. I realize it's rude, but the majority of people that ask me are the same ones that would get just as butt hurt if I answered with something along the lines as "I feel like shit". I definitely really don't want to answer with "good" when I can, but I haven't decided which other way of answering would be the rudest. 

I have ways of dealing with it, rather those ways may be natural or not. One way is I've become a hermit, and I usually only break out of my shell when I have to force myself to at work. This could be taken two ways, the first being that I don't attend as many activities outside of work as much as I use to, or as much as I wish to. I've had multiple friends cut me off because of this too, not understanding how much it takes out of me. If not intentionally, because I'm just not at those social functions in the first place. The second way and the main point I'm trying to make is that I tend to not pay as much to my surroundings. I live in a pretty sketchy neighborhood, so if I'm walking to or back from somewhere I force myself to pay attention more. I do that at work mostly on the sales floor when on the clock, because customers wouldn't know what I'm dealing with so it's just assumed that I'm being rude and inattentive. Unless I'm really stressed or just have to be really huffing it, which makes it harder to not be a hermit. I'm probably more of a hermit in social situations, not even just at social functions but when I'm out doing things like running errands.  Being a hermit, even when I force myself to be more social, causes me to miss overhearing things that people expect me to, or how I use to do it before my health problems started kicked into gear. Being a hermit is probably equally as much if not more of just a part of my body dealing with chronic pain. The second way I deal with it not so much, at least not on purpose at first. It's mind over matter, which in the beginning I had ways of doing it that would make the pain almost unnoticeable. But when the pain got worse, those ways of dealing with it stopped working almost completely. But those ways that I prefer not to mention what they were, isn't technically mind over matter. Mind over matter is focusing your mind on something else, so that you feel the pain less. Some claim that it doesn't work or doesn't work for them, but they tend to not be trying hard enough, or don't understand how it works. The way that works the best for me, is keeping my mind busy at work, doesn't work as well when I don't have as much to focus on outside of work. Chronic pain also builds over pain tolerance over time, as in my head would hurt a lot more and I wouldn't be able to function at all if it would as hit me as hard as it is now. Much less painful headaches use to cause me not to be able to function in the beginning, which also goes along with my point of it being a different kind of pain earlier on. It also makes any other pain that I have that's not associated with the headache a lot less noticeable, which can be a real problem. For example, if I don't see myself cut myself or see a cut reopen, it usually results in me bleeding and not realizing it until I see the blood. 

I have more that I was going to post about on chronic pain, but it's an important and will probably get a lot of views, so I don't want to bury what needs to be said in this post. I plan to post about this subject at least a third time, so if there's anything that anyone to know about chronic pain or if you would like to do a guest blog and speak about your own experience with it, or anything neurological related in addition to it please contact me. Either on the comments or contact me via E-mail, via Facebook or on the several social media sites that I'll be posting this to. Thanks for reading :) 


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