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Tuesday, August 23, 2016

Aromatherapy and Organic Aromas Diffuser

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

I am new to aromatherapy and since I have migraines I have been very wary of it due to scent sensitivity and exactly that as a migraine trigger. But I have been equally curious about it as well since it seems like it could be very soothing and a great complementary treatment to try. I am all for adding different complementary treatments to my treatment plan. And scents as we know go directly to their own spot in the brain. They can ignite specific memories. It makes sense they can affect mood and be relaxing. But also I am very new to the process. So I had to dig around one of my go to sites to look for some helpful migraine essential oils to give me a start.

So I have the pleasure of trying out the Organic Aromas diffuser for my adventure into aromatherapy. For someone like me who is new to this process they made it very easy for me to figure it out for which I am grateful. We are talking no mess, no heat, no water and no noise. It uses pressurized air and so here is the diagram of how it works if you are curious. It is actually an interesting process. In the end you are using the pure essential oil, not diluted. I rather worried about heat... not having it monitored or being on long so this was a tremendous relief. And I left mine on for some time and it wasn't hot at all. Definitely no mess. You just add the drops to the top, put the cap on and that is that. And it is so silent that I don't think it actually makes a noise. And, yes, no water added at all.

The model called Radiance I have is quite aesthetically pleasing to me and has a light inside that constantly shifts in colors (LED mood lighting). It has a dark wood base and hand-blown pyrex glass.  I took a picture which is there above. And a volume to toggle how much you are diffusing. It has low energy consumption. One feature I quite enjoyed (2 minutes on, 1 minute off) was the auto shut off feature... That switches it off at 120 minutes. Ideally it says for a space around 800 square feet. I was using it in both my computer room and my living room/dining room and it was perfect for those areas. It is easy to port around so I took it wherever I happened to be. I suppose I could have just turned it up too. So it actually uses pure essential oil which I gather other difusers do not, and this makes it very simple for me to operate. And That I like a lot.

What I loved about it:

  • Totally aesthetically pleasing to me: The dark wood based combined with the hand-blown glass is perfect. Add in the mood lighting and this is wonderful to have around my house. The light is rather soothing in the dark. It just so happens I am a dark wood sort of gal. Any sort of wood on the darker spectrum is aesthetically pleasing to me. I was pleased with the look. I checked out their other models and this is my favorite. But they do have light wood ones as well and different decorate pieces.
  • I like the fact you are using pure essential oils with no water. And I like how the system of pressurized air to produce the flow of essential oils isn't giving an overpowering scent. It is just right. You can adjust the amount but I found it perfect at the lowest setting in my living room to be honest.
  • It is very quiet. I simply don't hear it running which is very important to me. Because my idea is to use this combined with meditation. Also with migraines I loathe background noise with a hatred beyond belief. I cannot stand when something that is supposed to be relaxing and when you plug it in it makes insane background noise. I mean seriously. So quiet is an important feature for me.
  • That auto shut off feature which I actually did happen to use as I forgot it was on one night. I am insanely forgetful. Brainfog plus fibrofog = living in a fog. With no heat I wouldn't worry overly in leaving it on, just that if I did it likely would break eventually. Like that time I left the oven on for days and it literally did break. Point is, this is an important feature for the likes of me.

The diffuser comes with an essential oil that is Organic Aromas Signature Blend. It has Elemi, Clary Sage, Cajeput, Bergamot, Chamomile. Oddly enough more than a few of these were listed in my research for migraines, so that is awesome. It is a soothing scent to be honest. It says it has a calming and sedative effect. Frankly I like that idea. And great that they add that in there. I was able to test it out right away. Then when I felt more confident I used some of the essential oils I had from making bath salts earlier this year.

Sunday, August 21, 2016

The stigma of it

I don't know how it is for other people but I resisted the term disabled for some time. Mostly because of the stigma. There is a boat-ton of stigma associated with fibromyalgia. That it is just depression, that we are just lazy, that it is all in our heads. It was predominate when I was younger and just diagnosed and still felt now. I hid that I had it. I rarely talked about it. And when I did reference my health I referred to it as a chronic pain condition, vaguely and left it at that. Certainly I didn't say i was disabled.

To be honest there is this implication we are expected to conform to societies norms. Or even pushed to by medical professionals. Like there is nothing all that wrong with us. That we should strive to do so. And I always tried to do exactly that.

What I discovered in university was that every since summer job I tried was horrible for FM. Pretty much any job where you were on your feet all day was a no go. Any job with repetitive movements would not work. Any job with regular moderate lifting... nope. Any job with shift work, also a no go due to migraines actually which due to the fibromyalgia insomnia causing the sleep deprivation trigger to really kick in. So clearly we do not Conform because right off the get go we have job limitations. We have to be very, very selective of what job we choose. And I aimed for a desk job. Of course sitting in one position for any duration is also painful, so i learned pretty quick you have to shift position regularly and get up and walk about often.

Nevertheless I adapted. Figured out how to work around the fibrofog as best that I could. Tried to figure out ways to cope with the rather problematic IBS-D in the workplace, which isn't exactly a fun experience. Pushed through the pain. And never referred to myself as disabled. I had a chronic condition that I was coping with as best as I could and no one was accommodating me for it.

Then came the migraines which developed into chronic migraines. Not to mention asthma and hypothyroidism. But mostly a vast increase in Pain. And I couldn't cope. And I had a hell of a time maintaining work. It was still implied I Should be capable. But I was put on short term leave after short term leave, as if that would somehow make some sort of difference. I began to realize I cannot compete. I cannot maintain. I am disabled by pain. Just the way it is. Whether the medical community accepted it or not. Whether my workplace accepted that or not. They actually said, at that time, they didn't accommodate for people with my issues because it wasn't a 'physical' disability. In other words they considered only visible or acceptable disabilities to be valid. I wasn't deaf or blind or in a wheelchair. They are better now, or the branch I am in is better. But the stigma can be found everywhere. You are just not disabled enough to be disabled... not the right sort of disabled. And if they decide you Are disabled then they layer all the more stigma upon you. So there is simply no winning.

I didn't want the label because I didn't want the stigma. Turns out society didn't consider chronic pain to be disabling enough to earn the title of a disability. So I was indeed expected to conform to societies standards. And I could not. In every way possible I failed. And I was quite aware of my failure. And it made me very depressed. We want to succeed. We want to find a niche and be respected and to have motivation... we wanted to belong. To be productive, with our health issues.

Not to fail. And hate ourselves for it. To know we cannot do better but it is demanded of us. To feel so guilty. And try pushing through the pain to try harder, having no life because we exceed our pain limits in the process.... and still failing.

This is why accommodation is so bloody important. We can succeed. We can be productive. Accept we have a disability. Accept it needs work modification. Do it. And enable that employee to be a productive member of the team.

Anyway, i excepted the term when I understood I was disabled by the pain. I was limited by it. I was not able to perform the same tasks as as the average person. I wasn't able to maintain work of any sort full time.

The medical community resists putting disabled people on disability. And I understand their reasoning but partly I think it is the same stigma I faced when they wouldn't accept how disabled I really was. The pain clinic was the one that accepted my real level of functioning, or non-functioning. They want us to play the game at a different level because to them the game still has value. But to me the game is a form of torture. The depression, the pain, the fatigue, the cognitive issues... all make it hell. We are still expected to fit into that work role. As I get an IBS-D flare and run the the bathroom 20 times. Or with severe nausea vomit in the bathroom all day. Then I have migraine confusion and keep forgetting how to do a transaction or what I was doing in the middle of doing it. I am playing a different game altogether. It is called chronically ill personal tries to function and get job done without effing the hell up again.

Nevertheless being disabled by pain people cannot grasp it. How can I be disabled by fibromyalgia and migraines... if it wasn't by something I did? I must be doing something, not doing something that caused it. If I only did... more I would help cure myself. They basically are the ones implying it was my fault it happened. And my fault it is still this way. They don't believe I am in pain all the time. Only when I am in extensive pain and show pain behaviors ... that they believe to be when I am in pain.

Anyway, we are disabled. If you feel you are at that point. Then own it. There is stigma for everything in life. We need people to stand up and own their disability.  I didn't own it because of the stigma and because for some time I coped well with FM. But I took on that label when it applied to me and I accept it. I can't do certain things and I have to do certain things differently. I am not like the average person. I am cool with that. I cannot compare myself to the average person because it would make me feel guilty as hell. I compare myself to myself of yesterday... if I improve on myself that is a good day, my friends.

Wednesday, August 17, 2016

Flare day

The Flare up (see here for my article on it) is one of the worst fibromyalgia experiences. I fell into it sometime last night and woke up with the most unpleasant pains. In the hips, shoulders and back, not to mention all over aches. I was very fatigued yesterday and perhaps that was some prediction of impending doom.

Here is the thing we can pace and moderate but we cannot avoid all flares. Sometimes they just occur. Sometimes they are just radically unpredictable. And we just do not know where the hell they came from. This one I have no clue what triggered it. It certainly was not something obvious like overdoing it. Things like poor sleep are a constant factor but that could certainly have done it. It wasn't the weather. And, well, I can blame stress. Because I can always blame stress. But specifically I do not know. There is nothing that stands out. I know, usually, when it is stress induced because it is a significant stessor. But I can say I don't always know when it is lack of sleep because that does fluctuate from bad to horrific.

Nevertheless, we simply can't avoid it. And it is Painful. I was walking around like Frankenstein's monster. And slow, so slow.

Medications can only do so much I suppose. Mine don't do that much. They take the edge off regular FM pain that is true, but not the hyped up Flare pain. I can't rest when I have to work. Can't avoid stress... when I have to work. So... I am waiting it out. And moving slow. Tomorrow I am off and I will have a day of rest. And it will be a mellow day of relaxation and a lot of menthol creams I suspect.

It never ceases to amaze me how FM can flare up so spontaneously from like a 4-5 level pain to a 7-8 level pain. Fast, little cause, just BAM. Overdoing it being the most prevalent cause we experience. We just cross that limit a little too far... just a smidgen. And maybe we don't even realize it right away. Or maybe we do a little bit. With muscle fatigue and aches. Then suddenly the pain just smacks into us out of nowhere. It is sometimes hard to Know where that Line is. So it is pretty easy to cross. Especially on good pain days. Not to mention we are literally told all the freaking time to not let our pain stop us from doing things. So of course if we do things we are going to accidentally cross those invisible lines. Hell I cross them just doing the exercise I am supposed to do. Because exercise is painful all the time, so it is hard to know when I have pushed that pain limit too far. And then when I do it is extremely painful and I can't exercise for days after.

So to recap... pace, moderate... but don't stop doing activities... but don't exceed your limits and overdo it or you will cause a flare up. So simple, right?

Tuesday, August 16, 2016

The story we tell about ourselves often isn't true

We all have a pain story. I ask how did this happen to you. And you tell me... your pain story. Generally it is facts and about diagnosis and sometimes misdiagnosis. Our pain stories can be complicated because sometimes diagnosis is complicated.

But what pain means to us is vastly more than that. We think about it often. How it affects us. What we compromised or gave up for it. How it affected our loved ones. Its role in our lives.
And in there often gets tangled up 'self stigma'. We pick up the stigma from Around us or that is Implied and we absorb it into our own story and then inflict it upon ourselves. We are basically internalizing social myths and prejudices.

We are a failure- We have given up on life. We have no natural resistance to what life throws at us and we are a failure at handling life in general. Gee thanks. Little harsh on that one. But the fact is, we often reflect this one back at ourselves especially when we cannot work... well we are a failure then. It isn't just that we are exceeding our pain limits and cannot work, it is that we failed as a human in society. Sounds dramatic, but we think it don't we?
We are weak- like weak in character. As in it is a flaw we have. Not strong enough to handle things other people handle. Fragile. Emotionally weak, if we happen to have a mental illness.
We are lazy- Not that we are fatigued. Or having a flare. Or need to pace ourselves. No, we are actually just lazy. And it can happen that We can feel that we are inherently lazy. Even thought we know we are fatigued. Or we might suffer from motivation issues due to depression as well.
We are naturally stressed out people- I have heard this referenced for migraines and FM. And sometimes I have heard it said back to me by people with those conditions. That we just have 'high stress' and that it 'affects us more' and we 'can't handle it well'. And maybe that is why we got sick in the first place? Er. First of all positive stress is very healthy and how we even get things done. And I think we are stressed bodily after we get chronic pain, and generally handle it better than most would given the situation we deal with.
We are worthless to society- we are not productive, we just suck off the system. We are a drain on the system. We don't actually Do anything so we have no worth. And we can sometimes feel this and internalize it and feel horrible. Because we are what we do is so important to people. That people forget People are important and intrinsic worth is important. Who you Are as a person is important.

I could likely name more. You might have even encountered more. I know I have encountered more, but I have never internalized them. Like I am faking. Like I am not in as much pain as I say that I am, because I am complaining, exaggerating or because a am a woman and therefore just expressing it in a more exaggerated fashion. The 'it is all in your head' stigma... where they deny what you have exists and are implying you are crazy... because being mentally ill to them is also stigmatized. So to them 'all in your head' is equally as bad an option. The whole you don't have a disability because it isn't 'physical' and by that the person meant visible. Lots of stigma out there.

So what do we do? We have sucked in this abhorrent stigma and made it our own.
When we feel bad about our pain or about our illness analyze where that feeling is coming from. Why are we feeling bad? Do we feel worthless? Why would we feel worthless? Is it because we can't work? Then we know we have taken on the stigma of we are worthless to society because we are not productive by certain people's standards. Question where your negative feelings about your illness or pain are coming from. We all have these sorts of negative beliefs and ideas about illness that sneak in there.

I remember when I was diagnosed with fibromyalgia there was  a massive stigma about Having it. People debated whether it really existed. Called people just lazy and wanting to get on disability. And said it was just 'all in their head'. It made me feel ashamed and embarrassed to admit I had it. So for a very long time I never mentioned it to people I met. I refused to talk about it even when we were friends for some time. I refused to mention it to employers. As a result part of me still thinks other people think this way. Part of me feels worthless when I am not productive enough because I fear being seen as lazy.

Another example is depression. I refused to mention to anyone I was depressed even though I knew that I was. Including my doctor, due to medical stigma. Often with medical stigma if you mention you have depression they immediately minimize the chronic pain you have... believing all of a sudden that is all in your head. That it is All depression. I had actually heard of it happening. And when i was younger and mentioned depression to a doctor he completely ignored my pain which then delayed further my diagnosis. Even though the depression was due to the pain. Often we feel weak and ashamed with depression as well, again as though this is a character flaw and this is from internalizing the pervasive stigma around mental illness.

The fact is the stigma around us that we have heard, read and encountered does have an internal influence on us, unfortunately. It is sometimes hard to notice but it is there.

Monday, August 15, 2016

Why you should keep on going and not quit striving

Add subtitle text(1)
I have in my life coped exceptionally well and in those times of excellent motivation and hope I do things like:
  • routinely meditate
  • do regular physio exercises
  • do my regular exercises
  • maintain my work, mostly, as much as I physically can
  • socialize in my limited capacity
  • take my vitamins and supplements regularly.
  • I write in my gratitude journal regularly
I am doing all the things that I am supposed to be doing for my health. I am striving. In that striving I also try new things. Because I am striving to find things that work for me. My plan of action.

Friday, August 12, 2016

Fibromyalgia Problems #2

Follow up to my Fibromyalgia Problems

1- Since you had a good nights sleep...

2- People get together to do something active while you are on the sidelines watching...

3- Your medicine cabinet is starting to resemble the actual pharmacy shelf.

4- People keep telling you 'look so good' and to 'get better soon'

5- People want you to Do things on your recovery days!

6- You try not to make definite plans

7- You get frequent advice on how to help with your health.

8- You get tired of saying 'I'm fine'

9- But you completely fake being well regularly

10- You get sick of people not getting your pain.

Thursday, August 11, 2016

The dangers of antidepressants

The Hidden Harm of Antidepressants is a article in Scientific American in Feb 2016 that interests me due to my own reaction to antidepressants. 

Last September a study published in the Journal of Clinical Epidemiology revealed that a third of meta-analyses of antidepressant studies were written by pharma employees and that these were 22 times less likely than other meta-studies to include negative statements about the drug.
they uncovered suicide attempts that were passed off as “emotional liability” or “worsening depression” in the report itself. This information, however, was only available for 32 out of the 70 trials. “We found that a lot of the appendices were often only available upon request to the authorities, and the authorities had never requested them,” says Tarang Sharma, a PhD student at Cochrane and lead author of the study. “I’m actually kind of scared about how bad the actual situation would be if we had the complete data.”

“[This study] confirms that the full degree of harm of antidepressants is not reported,” says Joanna Moncrieff, a psychiatrist and researcher at University College London who was not involved in the study. “They are not reported in the published literature, we know that—and it appears that they are not properly reported in clinical study reports that go to the regulators and form the basis of decisions about licensing.”
The article also mentions the side effect of hostility and aggression seen in teens.  It doesn't get into the rising concerns over withdrawal symptoms of many of these medications... which is a serious factor. Cymbalta being on that is often mention for its horrific and disturbing withdrawal symptoms immediately after going of it and then reoccurring months later. It is so alarming in fact doctors are carefully considering putting patients on the medications in the first place.

My concern however is suicidal ideation and it is with Cymbalta as well. I have always had an issue with antidepressants and their rather depressant effect on mood. I have mentioned it to doctors numerous times how they mess with my moods. But they are off-label for many, many things. Migraines. Fibromyalgia. So I have been put on them for quite some times, regardless of what I say. 

Cymbalta however, was horrific. I had been having a hard time with chronic pain as it was and therefore with depression. My doctor thought Cymbalta would help with FM, migraines and mood. All in one deal. Instead the suicidal ideation increased massively in intensity. Like a broken record in my brain. On repeat. Daily. They say suicidal ideation is common in people with chronic pain but Intent isn't as common, well, above average but not that common. But I had intent. I was planning and thinking and fantasizing. Actively thinking about it regularly. Until my actual attempt. 

I was taken off the medication after my attempt and I didn't suffer the withdrawal symptoms many people suffer through... perhaps because I was so relived at the not adamant about my own demise aspect. It was a seriously messed up medication.

Not the first time I have had an adverse reaction to antidepressants on the mood front, but the most severe. When I talked to the pain clinics psychiatrist about my medications he basically said due to my reactions I could not be on antidepressants at all. For any reason. He put me on Abilify instead, which dramatically helps my depression related to pain. Rather astonishing the difference between taking that which improves my mood and antidepressants which just twist it up and make it significantly worse. 

What is dangerous about it is that I wasn't really aware it was the medication. I was tangled up in all the suicidal thoughts and depression of it. And convinced myself it was all 'normal' because of all the pain I was in. Not to mention I was hiding the depression because I didn't like the weakness of it all. (See 6 reasons I masked my depression for years). You don't tie it into the fact everything got significantly worse with the medication. You don't think all that mental stuff is due to a medication and not the depression, the migraines and the pain. The suicidal thoughts were very consuming after all. It literally was inevitable I was going to have a suicide attempt on that medication. It was a given. With my pain and depression, I may have gone down that road anyway eventually. It occurred to me many a time. Sort of hopeful thoughts of dying by stroke or heart attack, where it would not be my fault but I wouldn't have to suffer any more. Death fantasies I call them. And definitely more serious suicidal ideation but no serious intent in there. On Cymbalta I even dreamed about killing myself. I also often thought about driving home from work on lunch and killing myself just so I would have to work the rest of the day in pain. Just constant thoughts of death. And how. And when. And visualizing it. It is like the medication plants thoughts into your mind that you must think about. Plants seeds that bloom into vines that twist into your brain. 

The worst thing about it all. Is I tried to kill myself. And even if the medication was a factor I had to live with that act. The effects. The trauma of it. Not only that but the stats for someone who tries to kill themselves trying again are fairly high.... and I was in that category because I had a second attempt not too long ago. A really spontaneous one that didn't have much thought at all on a high pain night. Apparently a typical thing for a second attempt. It is easy to cross that line when you already have... between thought and action. The medication may have shoved me over it the first time but who knows about the future. My psychiatrist I saw blames a medication for the second attempt as well. He says I am very sensitive to medications with a side effect of suicide and depression. This was a quite smoking medication. I have no way of knowing if this is true, since it wasn't like Cymbalta as far as I can tell. I believe it was simply the pain and not wanting to exist with it. Pain brings on bouts of deep depression and suicidal ideation. And I spontaneously decided enough of this living business. Thus why I was put on the Abilify. Now when in high pain my mood drops, as it would in anyone, but doesn't plummet.

So I believe antidepressants are dangerous. Especially if they are not giving accurate accounts of suicides and worsening depression and suicidal ideation. I have heard horror stories about Cymbalta. It is often used for chronic pain, in people who have never been depressed, and they kill themselves or have an attempt. It is sudden, spontaneous leaving family shocked. I always thought from the accounts I had heard it seemed rather a problem. The numbers seemed rather high. Then we have the withdrawal factor causes a great deal of suffering in people when they try to get off the medication. 

Nevertheless they can be very beneficial as well. But they are used so much for off label. And at such young ages. Maybe they should review those recommendations. Carefully consider which medications would be beneficial to their patients. Definitely consider their mental health as is. How they have responded to that class in the past. Warn them, and their families, to be on the look out for depression or aggression. 
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