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Showing posts from September, 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…

30 Things Meme: Invisible Awareness Week

30 Things meme sponsored by Invisible Illness Awareness Week.

30 Things About My Invisible Illness You May Not Know1. 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: Th…

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 e…

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 Eps…

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 a…

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…

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…

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. Inst…

Went for a mini #vacation

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

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.

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 …

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…

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 g…

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 inhibitio…

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 connoisseurof 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 …

#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 p…