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

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.

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

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.


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.

Knowing you should not #work but knowing you don't have control

Sometimes acceptance is understanding there will be pain. There always will be pain and acknowledging that. Fitting your life in there anyway and limiting your suffering as best you can.

But not exceeding your pain limits. Not exceeding your capacity to cope. Not 'pushing through the pain..' Not survival mode, because one should never live in survival mode... it isn't meant to be that way.

I wish doctors, specialists and psychologists would comprehend this one thing. That we can 'maintain' under certain conditions. It isn't easy but we can manage with the right coping strategies. But some of us can't under other conditions such as working on top of all the pain. I myself have tried working since I got out of university. University itself became very difficult. But working has never worked for me. I had problems from the get-go. I was told I could not work one job by a doc due to how severe the migraines responded to shift work. On another I went on medical leave and they refused to let me work a consistent shift so I found something else. The last job I worked there for ten years... with 6 short term leaves of absence and one long term leave. Clearly I was not functioning the entire time. But each and every time their goal was to get me back to work. Because that is what they do. They think that will help me. Instead it puts me back in the same place I have a problem with. Pushing through the pain. survival mode. Desperately waiting on a year waiting list hoping the neuro will be able to do Something... and broken when he does not. A person gets pretty tired of this. Pretty hopeless. No one seems to grasp the point. That I cannot work with this much pain. But that I seem to maintain decently when I am off... well it takes about six month after I stop working to adjust and work a consistent program to maintain. I get daily migraines both ways, less status migraines, more sleep, less stress and am able to cope with the suffering the pain causes, able to do less if I cannot function, do a little more on a good day.

I just don't think we should be punished for not being able to work. I understand this limitations. I have come to terms with it. Took tow suicide attempts but I get it... I can't work. However, I have no power in this decision. It is the others, who do not see things the same way... the doctors, the pain specialists, the neuros. Sometimes I think they are pain per return to work patient they get they are so eager to push for it. Not to mention the precious insurance companies who are ready to kick you off for random made up reason, they are a very special form of stupid or lying bastards, or both. Either way not fun dealing with those nitwits.

You are more than just the #pain

It is true we are bearing the pain. However sometimes we manage the pain, and sometimes it manages us.

I think many times it feels as though the pain consumes us. Everything about us. All aspects of our lives as well.

When it comes to physical pain, it is a matter of finding ways to Be beyond the pain. Other than just this existence with pain we want a life with pain that has other things in there. Things like friends and socializing, leisure activities and hobbies, exercise, work, vacations... whatever the case may be. We want a fulfilled life. And if we are consumed by the pain it has eaten a lot of that. So we have to a) manage the pain b) learn how to cope with the pain that is there via pain management strategies and c) slowly incorporate the things in your life that are important to you back into it within moderation and within limitations. For example sometimes people invite you to events you cannot handle, it would take a lot out of you and would be entirely too painful. Instead say 'I can't make it to that, but how about you stop by the house for ________ or we can meet for lunch at ___________' Change the situation to one that you know you can handle for a small dose of socializing that works best for you.

It isn't as easy as it sounds because, well, you are still in pain when attempting things. But that is why it is in small doses, in moderation with limits. Keep it simple. Because all these things we do like socializing, visiting friends and family, exercising, hobbies, journals... all these things help with pain management because they help with coping and mood. You are more than just the pain.

Went for a mini #vacation

To Jasper national park for two days. Really one day to do things.

Disappearing Lake

View on top of Tram line. 
We took some driving tours, took a short walk around the maligne canyon, Athabasca falls and went on the tram line. All of which causes pain. Even with breaks in there... holy hell bring on the pain. Foot pain in the arch, knee pain, back pain, shoulder pain, migraine pain. At least we know I am not capable of much and cater our activities to that. Take a break between and then a longer break in there. Driving tours are great that way. Scenic. Have great views at the end. You can stroll about as much as you are able. Then more driving. But I put too much in one day, thus the pain I felt then, and now, and likely for the next few days.

Athabasca Falls
Rocks at top of tram line

rocks at top of tram line

View of Jasper from top of tramline.
The picture above is from a path to the peak of the mountain. So the tram line stops at a point. And then, at your own risk, you can walk up the path to the peak. My spouse asked if I wanted to walk up with him. I looked all the up... uphill walking, with vertigo. "yeah, no. That is not happening." I said. Because hell no. Just no way in hell can I climb a mountain. So off he want and even he only made it half way, which frankly I find impressive. I stayed below and explored the rocks off the to side of the mountain edge.

So then other than pain I experienced vertigo from the drive. At first it was sort of mild with fluctuations that were a little worse. Felt it sitting and standing. Then one day we were exploring a gift shop and Bam severe vertigo. I grabbed a counter and my spouse. And looked at all the fragile expensive things around me. Thinking I was about to become a bull in a china shop. I needed Out fast... well not fast so much as very slow and very carefully, but out. I also had the same very bad auras I have had for a couple of weeks now, which isn't fun when you are trying to enjoy scenery and it is all shaky and warpy. Nothing I can do about that, it doesn't seem to be going anywhere. Made some of my camera shots off though. As my focus isn't the best. I focus, things warp and shift and shake.

Despite the trials and tribulations and migraines and pains of traveling with chronic pain I really enjoy the fresh, crisp mountain air. The majestic mountains. The wildlife. The waterfalls. The emerald lakes. This feeling that my stress is eased and my anxiety is diminished even for a short period of time. I feel peaceful. I will take the pain, vertigo and migraines for a piece of that feeling.

As long as I have recovery time of course. That is essential. Always have recovery time in your vacation. It will take three to four days to recover from the one day there and the two travel days. Travel days, by the way, are part of where the pain comes from with FM... we cannot sit for long periods of time, even changing frequently is not enough on a long trip to ease the pain that comes. So you get there in pain. The next day you Do things, causing more pain. Compounding pain. Then you drive home. Which is why usually I have a slightly longer trip and do far less each day and a lot more of the day is just relaxing. That is what we did last time. But last time it was so sunny and the migraines required that down time, hit me hard.

long-term solution to short-term problems

I saw a comment today that irks me. Someone posted "Suicide doesn't take away the pain, it gives it to someone else." Which, frankly, I do not like as it is because it makes the person who is suicidal feel blame and guilt for a problem that is difficult and complex. When in fact, when they are suicidal they often feel everyone would be better off without them and would get through the grieving process in time... whereas their pain is endless.

But that is not my problem, because it is a true statement even if I do not like it. It is true it takes away pain from one, and gives it to many others. It is a painful and true fact.

What bothered me was a remark that stated 'long-term solution to short-term problems'.

For two reasons:

a) they do not comprehend the depth of despair a person is in. The problems seem endless. They seem insurmountable. Like the suffering will last forever. And there is no hope. No point in existing. You can't tell them otherwise, because their reasoning is twisted by the depression itself. I've done it before... just every thought can be turned negative. Everything lost to darkness. Or numbness. Nothing is enjoyable. And you want to say 'Hey no biggie... this is only a situational issue that you'll totally get over.'? Well, unless they only have situational melancholy... no, they won't because depression is not situational. They will find bad, horrible things about their existence even if nothing of import is happening in their lives for you to say 'you''ll get over that'. Unless you think the depression is a short term problem? In which case, sometimes it is years... sometimes it is decades... sometimes is is a life long disease. Sometimes it goes and them comes back again.

b) some of us have long term problems, like chronic pain, that we know for a fact will never end and strongly suspect will not improve with age. Is it incomprehensible for people to understand that some people suffer all the time? We endure all the time? And sometimes we get damn depressed about this. And this core issue, the pain, can never be resolved. What then? Because long-term solution to long-term problem sort of begins to make sense, doesn't it. You begin to at least get the point. We have to not commit suicide and Yet Also learn to live with Suffering. And that, my friends, is the difficult part. Dying is easy, living is hard.

Pain Awareness Month #PAM15

From my standpoint I am extremely aware of pain. However it is the time of year where we try to raise awareness about chronic pain to other people. I have been creating images and posting them. These are two of them. I plan to make more as well.

Fact is pain has a very significant toll on us. Mentally, emotionally and physically. It affects our goals, ambitions and career. It affects our social lives. It can lead to depression and anxiety. The fatigue can be so immense. The insomnia, often referred to as painsomnia for a reason, is an endless cycle because it makes the pain and fatigue worse, but the pain makes the insomnia worse.

We struggle endlessly to cope with it and it is a lifelong battle because there is no cure for chronic pain. There are less than effective treatments. There is exercise, which I never found to be all that helpful but quite painful. Painkillers, which just dull things somewhat. Other sorts of medications that you are lucky if you get any result at all, but get a lot of side effects. NSAIDs that can trash your digestive system.

Not to mention there is all sorts of pain to be experienced. I have quite the variety. I can't really say which is worse to be honest as they all have their particular flavors but I would say the migraines are the most disruptive to my existence. Nerve pain the least responsive to any medication I have ever tried, however, I do not have it as severely as I know others do, so that is good for me. Fibromyalgia pain, which is varied and does have nerve pain in there as well. Hypermobility syndrome pain which is felt in the joints. Really, here is the thing, any chronic pain is horrible in its way. It is persistent. It will get to you. It will be difficult to treat. You will have to adapt to it in various ways. It will affect your life.

There is some level of pain though that you can sort of establish a good level of coping. I certainly did when I was dealing with Fibromyalgia. It was difficult. But I got there. Mind you, that does fluctuate and can get worse. But there was a time I had this balance achieved. I could not work certain jobs of course, but other than that, I was pretty good. Then you reach a tipping point; in my case chronic migraines. Not even counting nerve pain here. But the chronic migraines with the FM, really hard to ever establish a balance or treatment. Society expects it of you. Doctors expect it of you. Just never have it. Just pretend to have it. Just push through the pain. Never really coping. Never really adapting. I am not sure what one does when the pain reaches that point. Personally I think coping is an achievable goal, but I think it isn't possible with working. When I was on leave I was able to 'maintain'. When working.... nope. Impossible.

But then, I am struggling right now and have been for some time. And there is that. Chronic pain is a struggle. I am also struggling with depression, which is a common complication. I aim to maintain again. That would be a goal I have.

Oliver Sack #migraine

Oliver Sacks recently passed away. He wrote a well known book in the migraine community called 'Migraine'.You can check it out by clicking on the image and it will take you to Amazon. I have been meaning to buy the book forever but have not gotten around to it yet.

“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.”
― Oliver Sacks

“To live on a day-to-day basis is insufficient for human beings; we need to transcend, transport, escape; we need meaning, understanding, and explanation; we need to see over-all patterns in our lives. We need hope, the sense of a future. And we need freedom (or, at least, the illusion of freedom) to get beyond ourselves, whether with telescopes and microscopes and our ever-burgeoning technology, or in states of mind that allow us to travel to other worlds, to rise above our immediate surroundings.

We may seek, too, a relaxing of inhibitions that makes it easier to bond with each other, or transports that make our consciousness of time and mortality easier to bear. We seek a holiday from our inner and outer restrictions, a more intense sense of the here and now, the beauty and value of the world we live in.”
― Oliver Sacks

“The brain is more than an assemblage of autonomous modules, each crucial for a specific mental function. Every one of these functionally specialized areas must interact with dozens or hundreds of others, their total integration creating something like a vastly complicated orchestra with thousands of instruments, an orchestra that conducts itself, with an ever-changing score and repertoire.”
― Oliver Sacks

“This usually occurs at the moment when my head hits the pillow at night; my eyes close and … I see imagery. I do not mean pictures; more usually they are patterns or textures, such as repeated shapes, or shadows of shapes, or an item from an image, such as grass from a landscape or wood grain, wavelets or raindrops … transformed in the most extraordinary ways at a great speed. Shapes are replicated, multiplied, reversed in negative, etc. Color is added, tinted, subtracted. Textures are the most fascinating; grass becomes fur becomes hair follicles becomes waving, dancing lines of light, and a hundred other variations and all the subtle gradients between them that my words are too coarse to describe.”
― Oliver Sacks, Hallucinations  

What my #illness has taught me... other than it sucks

Yes along the way my illness has taught me many things but it has definitely taught me that it sucks. It has taught me subtle variations of pain and numerous types of pain. I am now a connoisseur of pain. I know its infinite degrees and flavours and distinct types.

What else has have an invisible illness taught me?

1) Some days the pain wins: On a very bad day I can binge watch Netflix. Or read a few books. Because I literally am capable of nothing else. On days where the pain wins we must rest. We must find something to distract us from the pain and get through it. Since I have been introduced to Netflix, well hell, it works wonderfully for this.

2) Hermit mode: When I am in a lot of pain and just coping enough to get to work, sometimes, I have nothing left in me to socialize. I retreat. I hermit. And this has in the past cost me a lot of friends. They drifted away when I kept declining invites to things I could not go to.... too loud, too fatiguing, too far away. I am still a hermit but now, occasionally, I socialize in a very limited, careful capacity with a few select friends.

3) Support Groups: I admin for Facebook groups and Pages as well as members of others. They are very important. To know we are not alone. To deal with our isolation. To help with our bad pain days. To ask questions that come up. To know there are people always there that have your back when you go through problems.

4) Routines and Victories!: I set up a routine of small things I do every day. My 20 minutes of exercise. My 15 minutes of physio. My 15 minutes of meditation. My 15 minutes of housework. Spread through the day. My victories are small goals I accomplish over and above my routine. Like I did extra housework. Or any small goal I set up and completed. Victory is mine! I say to myself and I damn well celebrate that victory. Because I fight for them. They may seem small to others. I may even think 'I should be doing more', but no damn it... these are important to acknowledge.

5) Gratitude: At the end of a day in a journal I set aside just for this I write down one thing I am grateful for or thankful for. A study suggested it is quite beneficial for mood and it is also good to do at night because puts you in a better frame of mind. Also for every negative thought you have you need three positive ones to mitigate it... this is just one good thought you set to paper every day. I also write down good and interest notes about my day. I don't talk about the pain or my health. But rather all the normal and good aspects of my day.

6) So not Cured: I've learned there will be people who think that since you are on a new medication, you are cured. Who think since you had a short term leave from work, you are cured. Since you have not mentioned your pain, you are cured. Since you are smiling and laughing, you are not in pain. I take this in stride. Some people do not understand chronic health problems or chronic pain. They do not understand that because they are chronic we have a baseline for our pain and health that we always deal with, then bad days and then severely bad days. And we generally hide our true condition in order to function out in society because it is expected from us.

7) Sharing: I have also learned with invisible illness there is a lot of revealing and concealing. We hide behind our facade of wellbeing when we are trying to function. And we reveal when we are trying to explain. But what I have learned is that I don't need for everyone, or even many people at all, to understand my chronic illnesses. It is only important a select few people understand because I communicate with them all the time, are family members, close friends and loved ones. An employer I can reveal some basic important facts, or none, depending on what I believe they need. Same with coworkers. We have the choose to reveal and conceal what we wish. Doctors obviously I am very blunt with. But all other people, well, they do not need the whole story. Or any story. I may say nothing at all or a vague answer that is quite general.

8) Rest: I have learned there is nothing wrong with resting.  We live in this fast-paced society that demands we productive ever damn second in the day. When we are not, we feel bad we were not Doing something. But part of moderation is resting when we need it. I actually say to schedule it in your day. Do some relaxation breathing, biofeedback, meditation, take a warm bath or have a nap.

9) Guilt: You know guilt of the chronically ill plagues us. It never leaves us alone. If we were not ill we could Do so much More. Such that what we can do is never sufficient. We are letting ourselves down, our family down and our co-workers down. Too much pain to move? Guilty about that. Can't go out with friends? Guilty about that. Missed work? Guilty about that. I have learned it has no value at all. I have learned this fiction of who I could be or was is utterly useless for a comparison. I am me... not the me I Could have been or Was. Just me. And the me now has to live to my standards now. Which is why I live for my small victories.

10)Coping: I have learned that coping is an endless cycle. Sometimes we are coping extremely well and other times not so well. We are constantly learning new tools and tricks to help with the bad times, but there are bad times. And nothing is wrong with that. It is not a flaw in our coping, it is just that chronic illness is difficult and life itself can cause stresses on top of that. So we can get caught in depression, resentment, anger, guilt and take some time to get back to acceptance again.

#Firbomyalgia, #Migraines and Suicide

Results from a recent study published in the journal Neurology showed that patients who suffer from both fibromyalgia and migraines are at a higher risk of suicide. In the study, the team of researchers from Taiwan focused on patients who had migraines and comorbid fibromyalgia, observing that those who had fibromyalgia also suffered from more frequent headaches and had lower sleep quality.

To identify the clinical effects, frequency, and risk of suicide in comorbid FM in a cohort of patients with migraine, in the study titled “ Suicide risk in patients with migraine and comorbid fibromyalgia, the team surveyed patients with migraine who sought help in a headache clinic.

f 1,318 patients with migraine included in the analysis 10,1% were found to have comorbid FM. Patients with migraine and comorbid FM had higher headache frequency and headache-related disability, poor sleep quality, and were more depressed/anxious in comparison to those patients who only had migraine.
Of the patients with migraine 27,3% reported suicidal ideation and 6,9% reported suicide attempts. These results were even higher in patients with comorbid FM (ideation: 58.3% attempt: 17.6%, respectively).
The researchers also found an association between FM comorbidity and a higher suicide risk in three different migraine subgroups, i.e., migraine without aura, migraine with aura, and chronic migraine ~Fibomyalgia new
 I do not find this particularly surprising. Migraines increase your suicide risk, with migraine aura being the highest risk. Fibromyalgia has a higher risk of suicide. I would only assume that together, as that is pretty brutal in my experience, would increase the risk factors.

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