Thursday, September 3, 2015

#InvivibleIllness tuaght me it sucks #‎iiwk2015‬ ‪#‎InvisibleFight‬

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, to 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 chose 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 along. 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.




Wednesday, September 2, 2015

#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.

Saturday, August 29, 2015

Fibromyalgia: Questing for Sleep

The depression and the pain



This image represents the sort of depression I get with intense chronic pain. But not all depression is like this. I get that I am depressed. Don't get me wrong, I admit to it. When I was younger I would not because of the massive stigma. Doctors are likely to then say your pain was all in your head if you admitted to depression. And my depression is distinctly linked to my chronic pain, as it has been noted by my psychologist. Lot of pain, intense depression, especially status migraines that are in fact associated with mood issues as is. Lower pain, mood stabilizes. But I comprehend even at the best of times I have aspects of depression. Go through more severe bouts of it even when the migraines get particularly problematic as they have been.

However, this is the status quo. I find it very hard to imagine it being Otherwise with this sort of chronic pain. With fibromyalgia, chronic migraines, nerve damage and hypermobility syndrome. Not to mention other health issues. I mean this compounds to a lot of crappiness. I am fully capable of good moods. Of happiness. Of joy. Just things are dulled. Sometimes numbed. Sometimes plummet. I don't understand how I am expected to enjoy this really. Am I supposed to be pleased about this? Supposed just tolerate this existence with a smile on my face? I have a smile... yeah, it hides a lot. It is designed to.

So I know that when I add stressful, painful factors like work into the equation it is a lot more difficult to manage my mood because a lot more pain and a lot less sleep. How is this unexpected? How is this not entirely predictable? Understandable? Frankly, it makes a lot of sense to me.

When I am not working I Do a lot of things to consciously manage my mood as part of my coping strategies and even then dips and valleys are part of the pain game.

Pain wears a person down. The lack of sleep does not help with mood. We have to really work at stabilizing our mood. But I just think depression is something I will always deal with to a degree because the pain is something I will always deal with to a degree.

Obviously I have to avoid medications with a side effect of depression since clearly that causes major problems. Major risk factor there I had not considered since my depression always seemed so 'normal'... this constant presence, aside from acute pain, that I didn't think it would be dramatically affected. But it is. Not stable under those situations.

I just can't be indifferent to this pain. There is this component of suffering you simply cannot escape. Suffering is not pleasurable. It is not enjoyable. It does not make you happy. It sucks the happiness from things. You try to distract yourself from the pain, from your thinking, from everything because just pausing makes you focus on this suffering and the pain. On the suckiness of it all.

I do know that serotonin is affected by chronic pain and insomnia. However, I do wonder if antidepressants are a true solution for a depression linked to a chronic pain situation... a situation that is, well, chronic.

Thursday, August 27, 2015

Status migraining


There is nothing more brutal than a status migraine. The epic everlasting migraine from hell. The level 9 longer than 3 days migraine marathon. I am currently on day 5. Nothing works on these. Not triptans. Not painkillers. Nothing. Not sleep, because you can't Get any.

Yes, these migraines seriously affect my mood. I generally get severe bouts of depression with them. However, when I was off work they were far more rare, because I was able to get more sleep. When working obviously I do not choose when I get up and my brain chooses when I fall asleep... leading to far less sleep, leading to sometimes, just getting 'stuck' in a migraine.

So far since returning to work I have had two. And this last one caused me to be suicidal, so there is that. I mean, I cannot underestimate the level of pain especially when you are trying to function... and just can't, but are trying. Now before I went on long term leave... they were a monthly occurrence, so that was literally hell for me. I fear with 2 episodes in the last month and a half that the lack of sleep has caught up with me and work will now be an 'issue'. However, my doctor wants me on short term leave for depression in the short term. Operative word is short term. One hopes people understand that 'maintaining' is easier when we do not have to function in a large, massive capacity and can be flexible with our day and time.

Anyway, this pain is driving me nuts. I am now getting these dizzy spells too. Just erratic, swirling sudden spells all day long. And my heart is going wonky. Pain does things like this. Migraines do. Just having them too long can make a person very ill. At least this one I am avoiding the flu like symptoms. My anti-nausea med seems to be holding up and, thankfully, my painkiller is rather making my digestive system slow... rather than hyper speed symptom of IBS flaring which can be brutal with a status migraine (makes you ill and shaking, knocks the blood pressure down). So all good there at least.

But the pain is worn me down and I just need it to give me a break for a few hours or so. I have to go into work to pass my files on and that will take a lot of energy and will be stressful. I had hoped I would get some good sleep last night with my new medication but oddly enough seem to be immune to the side effect of drowsiness now. Maybe it will help tonight.

Someone with a status migraine Should go to the ER to get them treated. They are dangerous migraines. And not just because of mood issues and suicide risk. Because of stroke and heart attack risk. They are just dangerous states to be in. I don't because the ER here does not know how to treat them, but I know I ought to.

Wednesday, August 26, 2015

Suicide attempt 2

You wan to know what timing is? Writing an article about your last suicide attempt days before your next one. (Selfish) "There is a thought process that we go through during these times. My existence was torture and it seemed unreasonable that I should have to exist this way. Irrational that I would choose to exist in that pain and in fact choose to make it worse. Why would any sane person do that? And all avenues I had tried to reduce that pain had been used up. Society, my employer and my doctor at the time were all by their lack of caring and disinterest stating they wanted me to suffer. So this was my existence. Forever. And forever is a long time when you are in pain. A very long time. You see how endless and indefinite it is. If you just knew how long it was you had to go on. You begin to think how nice it would be to have a fatal stroke because... that would not be your fault. Then you imagine if you could kill yourself but make it look like an accident then no one would have to suffer with the knowledge that you had killed yourself. Clearly, I knew I was suicidal but these were Bad Days with Bad Thoughts. And my bad pain days were usually status migraine stretches, so I just had to wait them out... until I could get back to normal pain days. Normal hell. Then my work place would give me these ultimatums. If you do not work every day... we will do something unpleasant. And that would cause more pain, more stress, more suffering. Until that last ultimatum in that last status migraine..."


Last night I tried to kill myself. So add me into the statistic of repeat offenders. However a friend online picked up on the oddness of my posts and tried to get a hold of me and got more information, was more concerned and encouraged me to call 911, which I in fact did.

What is similar about attempts is that a) Status migraines of a Acute migraine lasting longer than 3 days. b) working full-time and having trouble with that. And C) sleep deprivations for the pain levels.

Last time I had been getting a lot of suicidal ideation. A lot of status migraines. Was actually in a state of frantic desperation. And had to work... or else.

This time, my manager is a great guy, so motivates me to work. Doesn't make me feel horrible when I can't. Makes me feel good when I do good. No ultimatums. I was getting some suicidal ideation but it was all passive.... all wish I could sleep and not wake up, wish I would have a heart attack and not have to deal with this.I just started work though since April, so only two status migraines so far. Anyway, what is truly different is what in the status migraine I had no intention of doing anything that night at ll. By mood was poor due to all the pain. I was exhausted from the lack of sleep. And i knew I would not get much sleep for the next day. Dreaded the next work day in fact with all the pain on so little sleep. ... and in a short span of time convinced myself spontaneously death was the answer. And clearly didn't ponder it long either. Just went right ahead.

And I was right after my first suicide attempt that once you cross the line from thought and action... it is easier to cross it again. I had worried about it. With reason as it turns out. Put me in the same situation; work full time, stress, status migraine, lack of sleep enough times.... get the same response, or the temptation, or the thought.

Which means, logically, I have to change one of those factors.

Apparently I love August though, because my first attempt was August 2010

Monday, August 24, 2015

It just hurts


"A white blank page and a swelling rage, rage
You did not think when you sent me to the brink, to the brink" ~Mumford & Sons. (I happen to be listening to them and that lyric caught my attention. Reminds me of losing control of pain and the disinterest of those that should be helping you through it).

Fact is I am not well tonight. I missed work today and I feel immensely guilty for this, as per usual. I know this cannot continue, but at the same time... the migraines are getting worse. I am not sure if they are getting worse because I am quitting smoking and that tends to make them worse... does every time with the quitting smoking products to the increase in stress. Or if it is just work and lack of sleep, which is pretty major all catching up with me. Lack of sleep being a big factor but it always is when I am working. Work itself in pain is difficult and stressful.

And I am tired. And it just hurts. And I wonder why do I have to put myself through all this? Over and over again. Clearly, I can't do it. Clearly doing it makes me very emotionally overwrought. It is mentally and emotionally exhausting. Fatiguing.

They ask so much from us, don't they? Doctors. Neuros. Pain clinics. Society. Want us to dance like puppets with painted smiles. To do what everyone else days, better even, but with a boatload of pain, fatigue, concentration problems and other problematic symptoms.



But I gave you all 
I gave you all
 I gave you all 

 Close my eyes for a while 
And force from the world a patient smile 

 But I gave you all 
I gave you all 
I gave you all 

 And you rip it from my hands 
And you swear it's all gone 
And you rip out all I had 
Just to say that you've won
 And you rip it from my hands
And you swear it's all gone 
And you rip out all I had 
Just to say that you've won, you've won 
Well, now you've won 

 But I gave you all 
I gave you all 
I gave you all

Mumford & Sons

Sunday, August 23, 2015

Damned Insomnia

Overview of Fibromyalgia and sleep dysfunction



Sleep dysfunction is a component to fybromyalgia specifically, but the fact is insomnia is a factor with all chronic pain. I know when I developed chronic migraines my insomnia got that much worse and that much more complicated. The migraines acute at night, making it difficult, or impossible to sleep... the lack of sleep a migraine trigger for the next day. Seems like an impossible cycle of pain and insomnia feeding into each other.

I know that I have had insomnia most of my life. I know that I have tried pretty much every single thing anyone has ever mentioned to me to help with it. Every herbal supplement. I was on some medications with a side-effect of drowsiness said to help some people that I found useless. And now on some sleeping pills that I seriously do not find all that strong to be honest and only mildly beneficial. I also take melatonin because apparently I have none of my own I have done hypnosis, which, apparently, does not work on me. I do deep breathing exercises. I do meditation. I might be missing some things here and I am not even bothering to list All the supplements... but lets just say I have done A lot since I have begun trying to treat my insomnia at around the early twenties. Insomnia bothered me as a child and in my teens. I was always tired. I skipped school, a lot, to sleep. But as pain increased, so did insomnia... and it became a Problem. A sleep deprivation problem. A 'I cannot sleep at all' problem. And I began to ask doctors about it to which they often said 'we do not treat chronic insomnia with medication'. Up until one doctor realized my migraines were being made significantly worse by sleep deprivation symptoms. Thus the sleeping pill, which did in fact reduce those sleep deprivation symptoms... therefore there is some sleep going on in there somewhere. I mean, rather than days of none at all.

So it is an issue. A very complicated issue I have yet to find a viable solution to. The pain clinic class I went to said my sleep issues were more complicated than the usual complicated. My pain doc said if I wanted to explore more intense sleeping medications I would have to see a psychiatrist as they know those sorts of drugs... but some are known to alter the personality and that does not sound good at all. Freaky really to contemplate being all drugged up because you simply cannot get a good nights sleep.

And yet, the thing is I imagine the pain would be less intense if I could just sleep. I imagine I could think better. I imagine my mood would be better. I imagine the fatigue would be less. I imagine... I have no clue really, but I imagine.