Friday, April 29, 2016
I was talking about triggers with my psychologist in regards to depression. He said he pretty much knew what mine were. And I said good thing someone knows. But in fact some were pretty clear. Two massively big ones: Pain and Over-thinking. And how it creates the perfect storm. How both of my suicide attempts at night in high intensity pain after over-thinking and spiraling into deep depressive states.
These two love to play together at night. Less distractions at night and my pain load is substantially higher at night. My pain generally starts baseline in morning then migraine kicks in a few hours later... then pain just climbs from there until it is around a 9 at night. Not always. I range from a 7-9 on average. Occasionally a 6 when I am lucky. I call a 7 a good day. An 8 a crappy day. And a 9 a high intensity day. It is the 9 that is the problem. 9 and overthinking often spirals out of control down the rabbit whole.
It often starts with something simple like I have to work tomorrow and how horrible that will be in pain. Then it is how horrible it is that I Always have to work in pain. Of course then I think why is it that we have to suffer more and work? Why is it we have to torment ourselves with this extra pain like this? It is like this madness. Intentional madness. That everyone seems to think is a fine idea and we participate in. Then I think... this is my life... forever inflicting more suffering on myself to fit into societies standards. Why am I participating in this endless madness of suffering? Never being able to just suffer in peace. Of course this leads to a massive bout of poor me syndrome of the pain is never going to end. What is the point of this existence if it is just on big ball of pain. I mean seriously, it is a very limited life, of continuous suffering and limitation and it seems like there is no meaning to it except not to make others sad from your demise. I yearn for sleep, knowing I won't get any. Yearn for death, knowing apparently that isn't the answer. (Yearn for no pain is perhaps what I should say because that is the actual truth. I really want the end of the pain.) In the moment the pain is this immense all consuming thing. And the thinking is just making it more Large more Profound more Real.
All that starts on the slippery slope of 'Man, it is going to suck working with this pain tomorrow'. When I have no clue what my pain will be tomorrow. And I know pain intensities vary. And I know I can have a life with pain.
But high intensity pain and over-thinking and depression is just not a good recipe. Because I can think about literally anything and I will think about the Worst case scenario. I will think myself into a depressive state so quickly it is terrifying. And I do mean terrifying since I have suicidal ideation.
I cannot do anything about the pain at that level. Mediation at that level of pain is out. It is too high to meditate. Just doesn't work. Close your eyes. Breath in. Pain. Breathe out. Pain. Try not to think about how much damn pain your are in. It is like mindfulness on pain. Not a good choice.
What I can do something about is that plague of over-thinking. I am a chronic over-thinker. Always have been. In this case I have to stop myself. I have to stop it immediately at that first negative thought. Stop it and think a more reasonable rational thought.
So... God it going to suck working in this pain tomorrow. Becomes: I don't know how much pain I am going to be in. Pain varies.
Now if I find the thoughts are exceptionally dark. I will go to sleep. Better to sleep off the mood.
And f I stop the thought I will then fill my time with other things so I don't circle around back to other negative pain induced thoughts. Anything I am capable of doing in that level of pain. Flipping though Facebook. Blogging. Creating content for my page... sometimes I create my best most compelling content that way. People can relate because in the moment I am in a state that is Very relatable. Put on some mellow music and just do some fiction writing. Anything to keep my brain occupied on anything else. If it is a high 9 on the cusp of a 10 then just mindlessly flipping through tumblr, FB of my wordpress feed is enough.
I have to understand that the pain is controlling my mood. Any complex thought. Any stressful thought. Any thought about the future. Anything work related. Anything pain related. Will all be turned against me. And my mood will plummet into the abyss.
Now, of course, I have also been put on medication to prevent that low of all lows where I get suicidal. There is that. And it is vital and important to treat sucidal depression. My second spontaneous suicidal attempt scared me. That I could cross that line so fast without even really thinking or planning. Because it is so much easier the second time. And it means my risk is that much higher. So medication is a must.
Wednesday, April 27, 2016
Every been told that you do not do 'enough' for your health? Like you are not working hard enough to cure yourself? It makes me wonder if people in fact realize all the things we in fact do for our health
- Doctors/specialists/tests upon tests- We have appointments coming out of our appointments. We have out doctor and specialists.
- Medications. I personally have more medications than my grandmother. Maybe because she is quite healthy and I am not..Point being we take medications.
- Psychologist- sometimes this chronic illness and chronic pain cause depression or difficulties coping. So we add that to our list of professionals we see.
- Mindfulness/meditation- our pain clinic, doc and psychologist all recommend we do meditations so we add that to our plan.
- Supplements- Some supplements are given to us by doctors like Vit D for pain and recommended like B2 for migraines. Others we add in ourselves. Out of pocked of course.
- Diet changes- at least a few times in our chronic lives we come across a diet that people swear by and we try that to help improve our symptoms.
- Exercise- again recommended by doctors, difficult to do, but slow and steady we do what we can.
- Alternative treatments- Acupuncture, massage, chiropractors, biofeedback. We try them all. And some work for us, some don't. If they work we add them to our plan of things to do.
- Address our sleep issues: with chronic illness and pain many of develop sleeping problems and we learn good sleep habits, and ways to manage it, and mediation before bed and medication if need be
- Most of all we always pace ourselves. We always moderate our activities. We always stay within our limits. Or pay the price.
Makes you wonder what people think we are going. We are doing everything we can to maintain as best a well-being as we can under the circumstances. Trying our best to achieve a balance.
Next time someone says you are not doing enough for your health list of every single thing that you are doing every single day.
Chronic is chronic. We are not curing ourselves. We are managing ourselves.
Tuesday, April 26, 2016
There was an intriguing study done in the University of Würzburg and published in Brain march 9, 2013indicateing fibromyalgia pain is due to small fiber neuropathy. One did wonder at the time if this was a feature of fibromyalgia and if so what was the cause of the neuropathy. However what if it is the case that many people diagnosed with fibromyalgia actually in fact have small-fiber polyneuropahy? This can not only affect treatment dramatically but this is due to the fact small-fiber polyneuropahies are often caused by underlying conditions. If the recent studies on this are accurate then this is a common cause of misdiagnosis with fibromyalgia.
Study: Pain Journal: Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia Painu June 5, 2013. By Anne Louise Oaklander, Zeva Daniela Herzog, Heather Downs and Max M. Klein. Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, 02114; Department of Pathology (Neuropathology), Massachusetts General Hospital, Boston, Massachusetts, 02114.
The study aimed to evaluate whether some people with fibromyalgia might in fact have small-fiber polyneuropathy (SFPN) as an actual cause to the illness. They reviewed 27 people with fibromyalgia and 30 controls for SFPN symptoms and markers. The study made use of Michigan Neuropathy Screening Instrument (MNSI), the Utah Early Neuropathy Scale (UENS),autonomic-function testing (AFT) and distal-leg neurodiagnostic skin biopsies.
Saturday, April 23, 2016
Even working part-time I have seen a substantial raise in pain. And it is difficult. So I have to look at it logically and see if this is worth it. What exactly am I getting from this.
- Income: I am getting money and this is obviously an important factor. I have bills to pay and so forth. I am getting less than my former roll and full-time, but less stress as well.
- Socialization: I am getting interaction with people at least three times a week. I am not one to ignore the importance of this. I feel like a shut in too long at home by myself.
- Out of the house: I am getting out of the house three days of the week. When I was off, there were weeks when I never left the house at all.
- Productive: I feel productive. I feel like I am accomplishing something each day I work.
- Sleep cycle: I feel my sleep cycle is returning to somewhat regular-ish areas. Instead of going to bed at 4am and getting up when ever. I go to bed 1 to 2am and sleep 8 hours. Even on days off I find I only sleep 9 hours. So no over sleeping. Of course, with insomnia I am under sleeping. But a more regular, normalize sleep cycle is a good thing on the plus side.
What am I losing in this?
- Increased pain levels. The idea was one day on, one day off. But I am in high pain on work days, and that continues into my day off so I am laid out and useless on that day. So not exactly getting anything done on that day like housework or exercise. I am taking max amount of triptans to keep up. And the painkillers are barely dulling the pain.
- Erratic sleep: Since my brain rather does not like going to sleep early and getting up early, it tends to not sleep much at night on days I work. Maybe three hours. So I am sleep deprived and likely the cause of the brutal migraines. Not much I can do about it when my sleep cycle has never been able to adjust to this.
- Increased nausea: Increased migraine pain has jacked up the nausea to epic proportions that even anti-nausea meds cannot handle.
So there is more gain than there is lose. But that pain is a big one. However it is important to note that part-time is significantly better than full-time. The roll I am doing is significantly less stressful... so it requires less work, effort and focus while in pain.
We all sort of have to do this cost vs benefit analysis with our jobs to see if it is working for us. To see if we need to adjust our hours, need flexible hours, should maybe work from home, have a career change or adapt in some other way if it is not working for us. Personally I think I need to continue and see how my pain adapts to the roll. I might have to start taking my triptans at work which I hesitate to do now due to the fact they make me very tired and rather stupid.
Friday, April 22, 2016
There was a population based study to take a look at whether FM increases stroke risk using the Taiwan National Health Insurance (NHI) claims database. Which enables people to evaluate a groupe of more than a million people followed with healthy controls over 3 years from January 1, 2000 to December 31, 2002. A total of 47,279 patients with fibromyalgia were studies with 189,112 healthy control
There were co-morbids that occurred like diabetes, IBS, hypertension, hyperlipidemia, coronary heart disease and interstitial cystitis, were more common in patients with fibromyalgia and also associated with a higher risk for stroke. The FM group held a 1.25 fold increased risk of stroke when compared with the controls.
In the absence of comorbids there was still a higher risk of stroke with the FM patients compared to the control group. It was particularly high in younger patients with 2.26 fold relative risk.
Increasing age increased the correlated risk of stroke risk there was presented with FM. But with the younger FM patients the relative risk remained high. The results conclude there is a higher risk of stroke with FM.
Tuesday, April 19, 2016
You know you have a chronic illness when...
1-You rate your pain by 'baseline', 'functional' and 'non-functional'.
2-You rate your fatigue by 'still conscious', 'unable to be upright' and 'capable of movement'.
3-You know more than your doctor about your illness and possibly Google at this point.
4-WebMD explodes if you attempt to use it.
5-Someone tells you 'But you look fine' and you throat punch them.
6-You can sleep 12 hours and still feel like you stayed up for 48.
7-You have a relationship with Netflix.
8-You refuse to go to the ER until things get extreme, by your definition of extreme.
9-You have met at least One judgemental douche nozzle doctor. With a 'its all in your head' pretending to listen to you and then brushing you off.
10-You were profoundly relieved at diagnoses to only then realize this is freaking Chronic.
Monday, April 18, 2016
My depression is correlated to my chronic pain. That is how it came to exist but I am on medication for it and seeing a psychologist for it.
I feel that it inhibits the treatment for my chronic pain. All the things I need to do for the chronic pain my depression, well, doesn't agree with.
It tells me to be hopeless. That nothing will change. That the pain will last forever. That when I am in high pain... that existence isn't even worth it. That a pained existence isn't worthwhile. That this life is pointless. Then it tells me I can't do a damn thing about it. That it simply will never go away. And the facts support this because the pain is chronic. However, it Enhances this. Because of course we can do things to hopefully improve and manage the pain. Yes, it is indeed chronic, but we want to manage, cope and improve to any degree we can. And I have this broken record telling me that it is pointless to even put in any effort.
Then when I think I should put in the effort (because logically I know there is verifiable research on the things in my lifestyle changes that will indeed have the potential to improve my pain management) well I am too damn tired and completely lack the motivation to do anything about it. I sort of try and then the effort to engage in reality to any extent is beyond me.
I have to do what I have done in the past. The routine of Doing benefits with motivation. Just doing even if it is for 5 minutes. Motivation is very much about engagement. Fake it to you make it. I used to do this at work all the time. Just pretend you are happy, engage and do it... until it happens. Exercise, even a little, until you can establish a routine. Do the things you used to enjoy until you enjoy them again. Act. Move. Do. Lack of motivation is this soul sucking beast that just drains you of all potential to succeed in your goals and aspirations. But I need to have these health goals in progress because the pain needs to be managed. This is very important to me. Pain not managed, means depression isn't managed. It is a damn endless cycle of crapola. And depression tricks you into getting sucked into its warm blanket of numbness and who gives a damn anymore.
So I have to come to terms with how the depression is affecting me. And slowly compensate for that.
- leisure activities
- watch my cognitive thought patterns
- distract from the high pain
- exercise- slow to start
- meditation- every day.
- gratitude journal
Friday, April 15, 2016
I began to think of the things we do along the way with chronic pain. That process we go through on the way to coping. There are a few things that passed my mind that we try to do, sometimes succeeding and sometimes not, but always aware of them.
- - Compare to others or self- We often have this ideal self. This self that was never chronically ill and has not pain. This person that would have achieved Great Things and be Much More Productive. And we compare ourselves to this fictional character that in no way refects our actual self in our reality. We learn to accept this real person is the one that needs to cope, adapt, chage and deal with this reality. Comparing to others also happens because we all strive to impove and then we compare our improvement or lack there of to others. When we should compare to our own Recent past performance.
- - Accept limitations- In the beginning I had a hard to finding my limits. I would find a summer job to work and it would be simply one I could not do. So I would literally suffer through it. Each summer job teaching me what not to do and my limits. We know them by pushing them. Go for a walk? And then find that limit by when the pain starts going up exponentially. We figure them out and accept them.
- - Learn to moderate- I learned this one the hard way. Every time I would push myself too far and then pay the price. Then learning to do less housework at a time each day and spreading it through the week. Learning work days are nothing but work, because my reserves are empty after. Days off are moderately doing things I can paced throughout the day. We pace, we rest and moderate. And thus avoid that boom and bust; of doing too much, increase in pain, can't do anything, have to recover, then feel a little better so do a lot... and all over again.
- -Manage sleep issues- We all know our sleep issues and disorders affect our health negatively. So we all know we have to address our sleep. And we all know it isn't easy. Meditation, biofeedback, medications... on and on.
- - Accept this life- Never compare to our past self. Our past self is often seen as better than it likely was for one thing. But we are looking back like if only this never happened. Think of what I could have done and achieved... if not for this. We can't compare ourselves to illness free past self. That person doesn't exist and you have changed a great deal since then. But past self could whip through and clean the house in a day. So then I look at the fact I did a load of laundry and swept, and I feel guilty because I Used to be able to do more. We have to accept this life with its current abilities and limitations.
- - Challenge negative thoughts- Over time it is really easy to get cynical, dark and even depressed about the constant pain. It leads to some pretty repetitive negative thinking. Like 'If I don't work then I am a drain on society and worthless' but we know we have more intrinsic value than what we do for a living. So we don't have to be overtly positive but when our thinking is beginning to have an impact on us they we have to help inspect our thoughts to make them more Realistic. Just write down the thought and reason out what is unrealistic about thinking that way. It is one way to help maintain our moods which I have discovered is as important as anything else with my coping.
- - Treat any comorbid mental health issues- If we develop mental illness like anxiety and depression it is important we have it effectively treated. They are always saying need to maintain our mood with chronic pain because it can lag. With mental illness it is a whole area itself that needs to be paid attention to. It is part of our wellbeing.
- -Don't stop doing- Sometimes the pain intimidates us from doing things. We know a certain level will cause us pain. So it stops us from going out, from socializing, from exercising and more. But the most important thing about chronic pain is don't stop doing and living. Always be prepared, but have that social life ... in moderation. Go out, just be prepared and stay within your limits. We need to do the things that bring us happiness and joy, as these help us cope. And other things, like exercise are often important to treatment. And we learn we cannot let the fear of pain stop of from living our lives.