Tuesday, October 6, 2015

Light of meaning in the darkness of mere being

I think chronic illness has made me struggle with meaning for a very, very long time. Just when I think I have something meaningful it is something I have to compromise away. It is very hard for the center to hold. To have this sense of self that is stable. In a sense our health can frequently change and this can cause havoc in our lives. Stresses and changes. Financial strains. Complications. Obstacles. We have to re-create our identity when we have to make massive life changes like things that affect our capacity to work. And sometimes we resist this. Sometimes we struggle with it.

I certainly struggle with it. To the point it all feels meaningless at times. It is rather all or nothing thinking we are supposed to avoid. If I cannot do this, then I am worth nothing. Well, bull. Meaning is created in many different ways. If I cannot do one thing I have to replace it with other meaningful things. I have to re-create my identity.

That 'darkness of mere being' is to be really avoided. We have to have a sense of value, worth, meaning, purpose, identity... moving towards goals of some sort. I hope to find that core meaning in the darkness of mere being once again. Give me that sense of inner stability.

Saturday, October 3, 2015

My #InvisibleFight #iiwk15

 My invisible fight is migraines. I have more than one chronic illness, but for the sake of simplicity I will focus on one.

The fight begins when people say 'It is just a headache' because they do not know how intense a migraine is. They diminish it by called it that.

The fight continues when people claim 'It is impossible to have so many migraines. You just can't get them every day like that.' Well it is possible. Chronic migraines are more than 15 a month, and yes, even up to daily.

 Then there is the 'you smiled and laughed so you must not be in pain'. But happiness does not mean I am not in fact in pain. To someone with temporary pain maybe they would not smile and laugh with the level of pain I endure. But over time, pain is a constant ordeal... we still feel things. Our mood still fluctuates. We may have more stress. Be more likely to have depression and/or anxiety. But we can smile and be in pain. We have facades, to hide the pain from the normals out there.

How about 'You worked one day, so how can you not work today'. A) because I can't miss worked for every migraines. Therefore there will be times where I will have to suffer immense pain and work and B) not all pain is 9 or 10. Sometimes it is 8 (horrible and I Will make errors and be slow, but will be there) and 7 (this pain is constantly a distraction but I feel somewhat functional.) Get it?

My invisible fight includes Migraine Associated Vertigo (Vestibular Migraines) . I think I must look drunk and is the most visible of my symptoms to be honest. On top of that I also have Persistent Migraine Auras which obscure and contort my vision. This is utterly invisible, difficult to explain but can really compromise my vision.

People cannot tell I am having a migraine. Plain and simple. I hide it very well. Aside from 9 or 10ers which is obvious since I lay inert doing nada wishing the pain would end. Also I don't speak. Don't laugh or smile. And the room is dark with no lights on. However if I am out in the world the migraine is Not that level. Likely if it is that high I triptan that migraine anyway to at least lower the level. People claim they can tell I am having a migraine, but they are wrong. The tell they refer to is my eyes... but it is fatigue, which yes they look when I am having a migraine. But I also have insomnia and painsomnia. So sometimes I don't have one yet, since my migraine occur early afternoon usually, not always.

Guaranteed they doubt I have migraines at all. If they ever had one they would never imagine working with one. Fact is we have to. We have no choice. Chronic pain changes all things about pain. Pain you normally would never work during, tolerate for long, do anything with... if it goes chronic, you have to just deal, and do all those things and more because, well, welcome to your new life.

Another thing about this invisible fight. It is not just the pain. It is the nausea, vomiting, brain fog, concentration issues, aura (sensory and visual), photophobia, phonophobia, sensitive sense of smell, depression, fatigue, digestive problems like diarrhea, frequent urination, sensitive painful skin (scalp pain.), facial pain, dizziness, vertigo.

I have lost days, months and years to this pain. Time I will never get back. One has to wonder how many more days will I lose to this disease? The disease that takes, and takes, and takes.

Wednesday, September 30, 2015

Why fight for #awareness?

I am blogging for Invisible Illness Awareness Week on the topic of: why you fight for awareness as an illness advocate (or just some man or woman who likes to make some noise)

 I fight for awareness for many reasons. When I first started this blog it was more an online journal for cathartic reasons. Where I could post information that interested me as well. Have a record of my progress, or lack of. However as time goings on you see so many people struggling as you do. Who benefit from the information you provide. Who relate to the struggle.

So I look at it this way:

  • This is part of my story. Unvarnished, often blunt. This is the chronic pain lifestyle. Something people can often relate to. If someone doesn't have an illness I hope they can grasp it a little better.
  • sharing information. There is a vast array of information out there, but only a fraction of it is good sourced information. I like to dig up research. I blog about research that interests me. On my Facebook page I am more likely to broaden my scope to articles about studies rather than studies to make it more approachable and because journalists get access to it in its entirely. But often provide the original source if people are willing to look into it. I do research when I post informative memes with source info. I know a few quality sites that I go to for good information on migraines for sure, as I help admin a migraine Page and Group. 
  • Connecting with community. It is important that we have a place to gather and share our own stories. This why I have a Facebook page, help run another and help run a group. I create images that express the experience of migraines and chronic pain and chronic illness that share that sense of connection. So people can know they are not alone in feeling they way that they do. I help with safe places for us to gather to talk about migraines so we can seek out comfort or ask important questions.
  • I know that chronic pain is dangerous. I know it can cause suicidal ideation. And suicidal actions. I have been there. It is very important we raise awareness and understanding that pain, but itself, can kill if not treated adequately.

 I truly want to do what I can to bring awareness out there. To communicate with others. To spread knowledge. To have them understand they are not alone.

30 Things Meme: Invisible Awareness Week

30 Things meme sponsored by Invisible Illness Awareness Week.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic migraines, Fibromyalgia, Hypermobility Syndrome, Hypothyroidism, Asthma

2. I was diagnosed with it in the year: Chronic migraines 20, Fibromyalgia 20, Hypermobility Syndrome 16, Hypothyroidism 30 ish, Asthma 27ish. Hard to really remember all that to be honest.

3. But I had symptoms since: Chronic migraines 12, Fibromyalgia 12, Hypermobility Syndrome since birth, Hypothyroidism 30, Asthma 27

4. The biggest adjustment I’ve had to make is: Sacrifices to careers and work. More than once. Then grasping the fact I may not be able to work full time

5. Most people assume: The most brutal stigma I have faced is when people assume I don't want to function, don't want to contribute, don't want to work or don't want to socialize when I desperately want all the things in life they value.

6. The hardest part about mornings are: The insane grogginess, zombified, sleep drunk feeling I have to shake off before I can even pretend to function.

7. My favorite medical TV show is: Sorry, don't have one.

8. A gadget I couldn’t live without is: Smartphone. That thing plans my life. Without it, pretty sure I would forget my name.

9. The hardest part about nights are: Profound painsomnia... that is the high pain level and insomnia mixed together making it impossible to sleep.

10. Each day I take __ pills & vitamins. (No comments, please) 7 pills and 5 vitamins.

11. Regarding alternative treatments I: I do meditation and deep breathing. I exercise on a stationary bike, but have slacked off since returning to work due to the increase in pain.

12. If I had to choose between an invisible illness or visible I would choose: Neither. Both have their stigma inherent in them.

13. Regarding working and career: It has affected my career choices since school. It has affected my capacity to maintain just a job. I am currently on a short term leave from work but should be returning soon here. In what capacity that is depends on the specialists I see and my employer.

14. People would be surprised to know: Many things I expect. One thing that always surprised people at work was that migraines were daily (That they could even be chronic surprised people) that they had symptoms that could occur outside of the actual migraine attack... like I have persistent migraine auras, so auras that occur often and not linked to a migraine, and I have vestibular migraines, where the vertigo occurs outside of the migraine attacks often with a motion trigger and sometimes lasting days and even months. These facts always surprised people because they never thought of migraines as the neurological condition they are. So a lot of the symptoms often came as a surprise.

15. The hardest thing to accept about my new reality has been: That so many possibilities in my life have been eliminated.

16. Something I never thought I could do with my illness that I did was: graduate with my Masters.

17. The commercials about my illness: Are amusing. Watch all the people dancing and smiling and Then listen to that Long list of side effects. Yeah, can't be that fun can it. Assuming they were ever that effective, which they are not.

18. Something I really miss doing since I was diagnosed is: I have been chronically ill since I was a kid so hard to answer this one. Although I can say since the pain has upped its game I have become quite a hermit. I miss socializing like I was capable of doing in moderation when I was younger.

19. It was really hard to have to give up: Having a career and being able to function well at it. And therefore financial stability and planning for my retirement.

20. A new hobby I have taken up since my diagnosis is: I write a lot of fiction. I always have but now I self-publish some work. I have written some poetry. I blog. I contribute and admin on a migraine group and on my own Facebook Page.

21. If I could have one day of feeling normal again I would: Do something enjoyable. Like go out for dinner and to a movie, which I have not done in ages since it is a migraine trigger.

22. My illness has taught me: Moderation in all things. Patience. To enjoy the simple things. To not sweat the small stuff.

23. Want to know a secret? One thing people say that gets under my skin is: 'Everything happens for a reason.' I know they don't mean it to. But it implies to me that this Suffering is for a Reason. I do not believe in anything being predetermined. Things just happen. And we can choose how to react to what happens. But there is no grand calculated reason behind it.

24. But I love it when people: I love it when people accept me as I am, within the limitations of who I am. When I cannot do something, or am compromised by my pain, I love it when they accept that. When they accept that I may only be able to do a little one day.

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass. No acute pain lasts. I know that. So I think that to myself to get through it. I know, also, that more pain will come but the point to me is to remember that those high peaks do not endure. Thankfully.

26. When someone is diagnosed I’d like to tell them: That we learn to cope. We learn to moderate. We learn tricks to get through the day better and deal with brain fog. We learn our limitations and where they are. Coping is a fluid process and there will always be times were it is difficult, but at the same time we continuously pick up coping skills to help us strategically live our lives.

27. Something that has surprised me about living with an illness is: Just how much we can endure. Just how much pain becomes this level of normal background noise. Functional pain and non-functional pain.

28. The nicest thing someone did for me when I wasn’t feeling well was: People have taken shifts for me at work. An old boss for me once had a former employee take a shift for me on Christmas Eve when he offered out of the blue... and that I will always remember given how horrific I was feeling, how impossible it was to find staff to replace me and the fact this man had no clue who I was and yet he offered to do this.

29. I’m involved with Invisible Illness Week because: Because it is important for me to raise awareness about invisible disabilities and their impact.

30. The fact that you read this list makes me feel: Glad that I was able to reach someone

Sunday, September 27, 2015

The Look of #Doubt

I was thinking about my self-worth and my self-care. I am told both are not so great. However, I have been in this pain game a very long time and part of how I behave has been conditioned into me.

Is it really my fault I tend to brush off my pain when I had doctors flat out say FM didn't exist or were not willing to treat it for over a decade? Who gave me that Look... that one of doubt. Of flat out denial. That my pain was insignificant to them. So I knew not to really get into it. To understate it so they would not think I was 'exaggerating' or 'complaining' or 'drug-seeking'.

So I lived a long time just enduring the pain. Understating it. Just getting by by not doing the things that would aggravate it. Not work jobs I knew I could not handle... by actually trying those jobs and finding out the hard way that definitely could not work them. I adapted. I coped. But their indifference had a toll on me. I rarely discussed my pain with others. Because I felt embarrassed by it. Like I should be strong enough to endure it in silence. Like it should not have an affect on me.

When the chronic migraines came along doctor did treat the migraines. Hell they threw a number of preventatives and triptans my way. Because they understood the concept of a migraine. Not so much chronic migraines, but they knew enough to send me to neuros. But by then I had been programmed. Don't complain. Understate the pain. Push through it. Endure. Don't talk about it. And my coping strategies, that worked with FM, didn't work with chronic migraines on top because the pain load was too intense. But I wouldn't admit to it. And I was a t risk for depression, just as I was when I had problems coping with FM in the early days. I certainly wasn't going to say that to a doctor because the response I had to that when I was younger was that everything was depression and screw my other symptoms (this was about 2 years prior to my FM diagnosis).

So now I have an issue that likely is giving me problems. You see, I don't like to make a fuss. Ever. Having chest pains? Don't want to make a fuss about it and have someone call 911 or drive me to the ER. Not when it is likely triptan side effects. Having suicidal thoughts? Not going to wake my spouse up because he needs to sleep. Hard time coping with a status migraine? Not going to make a fuss and go to the ER for treatment. It takes a lot of time and my spouse would have to miss work.

Apparently this reflects upon my self-worth. I am not too sure. I think it reflects upon this idea that my health is not important and if I go to the doctor, ER for something that turns out to be insignificant I will get the Look. So I wait to see if I deem it to be important enough. But maybe I don't want to bother anyone because I don't think i am important enough to bother them with my problems.

Tuesday, September 22, 2015

New magnesium

I am trying this new magnesium from Quench Essentials. It is very difficult for me to take magnesium because I have IBS-D which means my digestive system is already hyper speed. I do not need anything they helps with that... at all. And all the magnesium I have tried, pill or liquid, have resulted in a Lot of discomfort for me.

This one however which is mixed with purified water, and tastes just like water too which is nice, I have had no issue with. Not sure if this is because I have been on pain killers which slow my system down a bit or because this one which is magnesium chloride actually is working for me.

I prefer liquid forms as they are easier to digest so this one is perfect.  I have no actual result from it yet, sort of testing the waters. I am taking it for fibromyalgia and for chronic migraines. At the minimal dosage right now and then increase based on digestive comfort levels.

According to Daniel Reid, author of The Tao of Detox, magnesium sulfate, commonly known as Epsom salts, is rapidly excreted through the kidneys and therefore difficult to assimilate. This would explain in part why the effects from Epsom salt baths do not last long and why you need more magnesium sulfate in a bath than magnesium chloride to get similar results. Magnesium chloride is easily assimilated and metabolized in the human body.

In addition to its functions as an electrolyte, chloride combines with hydrogen in the stomach to make hydrochloric acid, a powerful digestive enzyme that is responsible for the breakdown of proteins, absorption of other metallic minerals, and activation of intrinsic factor, which in turn absorbs vitamin B12.
Using other magnesium salts is less advantageous because these have to be converted into chlorides in the body anyway. We may use magnesium as oxide or carbonate but then we need to produce additional hydrochloric acid to absorb them. Many aging individuals, especially with chronic diseases who desperately need more magnesium, cannot produce sufficient hydrochloric acid and thus cannot absorb the oxide or carbonate.
Chloride is a highly important and vital mineral required for both human and animal life. Without chloride, the human body would be unable to maintain fluids in blood vessels, conduct nerve transmissions, move muscles, or maintain proper kidney function. As a major electrolyte mineral of the body, chloride performs many roles, and is rapidly excreted from the body.Dr. Sircus

Sunday, September 20, 2015

Bad aura days

I have had about enough of this long lasting aura am having. It has lasted for over two weeks now. It is like looking through heat. It is warping things I look at. Anything I look at is shaky and warpy. If I look at the sky or a wall I can actually see the form of the aura itself, but overlayed over reality it just warps everything because it is clear.

That is part one.

After seeing that for some time my eyes get tired or wonky. They started flickering so the light I see gets darker, then lighter, then darker... like the dimmer switch of the world is being messed with. Then the more elaborate aura kicks in. The band of intense colored sparkles sweeping in my lower vision up around to a black and purple pulsing blob of color smear. Grows larger, encompasses more and more. Eating away at my vision.

So I have put my foot down and have not been driving. Which is fine since I am temporarily not at work. Doctors never listen when I say I should not drive with persistent migraine auras and vertigo. But when they are like this, I can't distinguish things right. Movement is catching my eyes all the time, that is not actually movement. Things have less distinction because it is all shimmery and staticy.

Normally when you have an aura and you are driving... that is a normal before a migraine aura you should: pull over and wait out the aura. Late to work or not. You should never drive with an aura. Obviously. Hard to see through the damn things.

When you have persistent migraine auras though you just get this sort of disinterest from doctors like they could not care less to treat you let alone understand your vision is compromised.

It frightens me sometimes what I have done because doctors do not care to make a point about it. Because they insist I work and I have to get there.

So no idea how long this particularly intense bout will last for. They are quite unpredictable like that. Sort of making it difficult to read and go on the computer for any extended time. Makes my eyes hurt. I have been enlarging the text so I can read which is helping a little bit, but hard to focus on words. Better to just skim and look at images.


Saturday, September 19, 2015

too disabled to matter or too able to be disabled

I hover between too disabled to matter or too able to be disabled. And because of that I live in this place where I get very angry, because it seems to me everyone (everyone medical that is) wants to push you to work. Even if that is something you can determined is just not possible. You wish that it were, but know that it is not. Yet that is their ultimate goal. To get you just sufficiently well enough that you will be miserable working. Not in enough pain to want to kill yourself... but close. And they will call that a victory. It infuriates me.

It is like my quality of life means nothing. I know how I can maintain, carefully, with a lot of work and effort when I am not working. And it is not easy. And obviously I am still in the same amount of pain. But I maintain my suffering and my mood. I do not over extend myself. I do not overdo it. And I know what happens when I work and everything falls apart.

It is really a catch 22. If you are off work and you get to a point with all that work, planning and effort... some moron will assume you are 'significantly improved' even though the pain itself has not changed at all. Then they will send you back to work where you will rapidly get 'significantly worse' because they are morons. Thus how I ended up on so many bloody short term leaves. Round and round we go with no one learning the obvious lesson here. Sometimes people just cannot function at work. Just the way life is. We want to, we try, we fail, we try again, we fail, we try again... we fail. We know we can't. But apparently the medical field and insurance companies are real slow learners.

Frankly, I am really angry about it. Even though there is nothing I can do and I am utterly powerless I am so angry about this. And immensely tired. I loathe even having to go through the damn process again. I doubt very much it will work in my favor, since it never does. It seems so damn pointless to me. Yet I will because I must.