#Being in #pain vs seeing pain

'Everyone will get used to it but me' This is a fact. Pain is always new to us. It is a constant experience for us. A Live Experience. A Being-In-Pain experience.

There is only a certain degree of this experience we can divulge. For one, language does fail us in this. There is a depth to this experience that cannot simply be expressed. Levels to it. Factors to it. It would be less a statement and more an entire in-depth conversation. Secondly, we do not always express our pained experience. We know it is not something that people want to hear all the time. Nor do we want to share it all the time. And sometimes it makes us feel like we are complaining. It does come out when the pain is particularly There.

Others though, yes, it loses its originality. You cannot expect others to feel its 'freshness' like we do. So for them it is not this constant experience. If you do not express your pain all the time and they do not see any pain behaviors from you, which most chronic pain people do Not express then it is not uncommon for them to say 'You look good today, you must be doing better!'. It is not uncommon for them to think looking good must mean feeling good. Because they do not have that constant persistent experience suggesting otherwise. Nor do we constantly tell them otherwise.

Hey I feel like crap

Hey I feel like crap

Hey I feel like crap

Hey I feel like crap

Hey I Still feel like crap

They would get pretty damn tired of That quick. And yet, without it, apparently we are cured every once in a while.

"You getting those migraines again, eh?" *Sympathetic sound* "They are back?"

What the... where did they GO???? Yeah I am getting those migraines STILL. Still. Always. Chronically.

And we can forgive these errors. We have to. Because we have the lived experience. The constant reminder of the pain present within us. For them.... it loses its originality. They don't pay attention to it. They even tire of it. Or fail to see it. It fades from their minds.

"We are too #able to be #disabled or too disabled to #matter."

I made this image for the Migraine Misfits group I admin and no truer words have ever been said.
"We are too able to be disabled or too disabled to matter."

It is hard to even find this line with society to be honest. I can never find it, but I feel it. I have gone back and forth on it. As can happen with invisible disabilities. Most of the time I find we are left struggling on the 'too able to be disabled'. Left to flounder in a society to fast paced for us, desperate for some sort of relief or just for the pain to stop for One moment... but just too able to be disabled, right? Because we present this 'functional' image. This 'can't see it' so it must not be that bad.

Functional. Or just functional... enough. And so society does not give a damn that you suffer for it. It is a problem. I like to think most of us are offered the right programs to cope with our chronic illnesses but I was diagnosed with my first at 16 and just got into a chronic pain clinic at 37. So I know people slip through massive cracks in the system. I know a lot of us just try things on our own. Acupuncture? Sure, I'll give it a go. Chiropractor? Tried that. And the list goes on and on and on. With utterly no guidance at all. In my case no real medication either on the FM side until six years back. So it is a broken system.

I had a doctor that when I was on a short term leave from work, which happened too often (yeah, not so functional after all) his sole purpose was to get me back to work. Because he must have believed himself I was too able to be disabled.

Then something happens and you cross the line and are 'too disabled to matter'. You are of no use to society anymore and they have no use for you. You could starve for all they care, and you might given the income they provide on disability. That, frankly, is a disgrace. Here, in Canada, and in the States. People should not have to live like that just because they are disabled. But you also find you are ignored, discounted, considered worthless and your opinion not taken into account. Half the time they think you are lazy, a drug seeker and faker any way.

Then someone decides, no, you are more functional than that. So now you are back to being too able to be disabled.

People never look at the stigma inherent in the system. How little companies accommodate disabled employees unless Made to, and then resent that fact. Or don't do it at all. And if you do not function as you are told in the workplace they come down hard with the ultimatums. Get Better damn you!

The stigma of those on disability is just right in the system. Keep them just above the poverty line? What is that about? These are people that had no choice about there illness. Had great jobs and careers and you knock them down and say sorry try living in poverty.... because we don't Value you. You don't Matter.

My new #freelancer website

So here is my new Freelance writing site The Hermit. I had to make a new one because the old one was not working for me so for a bit I was just using my writing blog. But when I was on long term leave I could not make any income so mostly I was doing low pay or for free work. Time to up my game as it were.

Not to say that I will not occasionally add other work to my portfolio that is for free if it adds something to it. I was thinking of doing just that. Shows experience and adds a little something for people to look at on the site.

So hopefully this will add a little something for people to review when I am looking for paying work. I have a few things in print on my portfolio so that is something at least. And my regular online gig as well.

This is my plan since being tossed by the insurance company. To pick up more freelance writing. Article writing and blogging. That sort of thing. Then something for a baseline income to cover the rest. It is the best idea I have at the current time based on my skillset. Research and writing skills. Plus because my pure enjoyment of it. That would be an added bonus really. Ideally I would find something in the FM and migraine community, but that would be the icing on the cake for me. My perfect scenario.

#glorious #moments we can #win from the #Pain

Okay, embracing life is a complicated thing when compromised by a boatload of pain. However, it is very true that time will pass and with it our lives. We have to figure out ways to increase our quality of life such that we can will these glorious moments from the pain. Or just win moments. I like moments.

I can't myself recall too many glorious moments I have won. Mostly I think of vacations that I went on despite the pain. As we all know chronic illness and chronic pain make vacations difficult. It is not just the planning involved in just going it is the very fact you are taking your illness With you. So you have to pace yourself. You cannot do all the things you Want to, just a little bit each day with a lot of rest in there. And there will be pain. Nevertheless you get time with family, you get a change of scenery and you get joy. You get glorious moments.

I vividly recall the trip I took to Scotland with my family when I was 18 for example. That was a glorious collection of moments I will always remember. My great-great-grandmother was turning 100.

We returned to Scotland several years ago and it was also a glorious collection of moments I got to spend with my spouse. My cousin was getting married.

Then there are the trips that are short into the mountains. Like the one my spouse and I took into the mountains to a cabin (I cannot handle a tent, too painful). I find it very peaceful in the mountains. And though we took in the scenery, mostly by driving, and short little walks... I really enjoyed myself. I had some wicked migraines but that is Life. I treated them aggressively as I could and did what I could to enjoy the peace the enviroment brought with it.

And I would have missed those had I been afraid to travel with the pain. Knowing traveling tends to increase the FM pain and the migraines as well usually. Knowing that, you feel like why would you even want to go? What would be the gain? There is a lot of gain, just of a different sort.

It is that way with the little moments in life. We know there will be more pain to earn those moments but we gain mood improvements, mental improvements, memories, life, glorious moments.

We have to remember however for every moment we want to earn:

  • Pacing: we always have to pace ourselves. Even on those low pain days. Especially those low pain days when we feel like we can do more, but then push too hard and it leads to much more pain. That cycle is what pacing is designed to avoid. No push, and crash, cycling. 
  • Taking rests when it is needed. Even with people it is important to know when you need a break and take it. Tell people that you need one and suggest going for a coffee or lunch or to have a sit down for a bit.
  • Leave when you have had enough. If you have reached your limit no matter where you are understand it is fine to leave early. You do not have to stay. You are under no obligation to push your limits.
  • Remember for things like FM especially that changing positions is important. Do not sit for too long. Do not stand for too long. If you go to an event that requires a lot of sitting time, go for a walk or get an aisle seat and stand beside it for a bit. For any event that requires a lot of standing or walking, ensure you are positioned by somewhere where you have the capacity to take a break when needed.

It can be difficult with pain and fatigue to have the motivation and energy to want to do anything. And I do not mean that we should jump in and go run amok. Just try to fit some moments in there. Fit some life in amongst the pain.

#socializing and my #insurance company

There is One thing I have done on the recommendation of my psychologist that the insurance company I deal with has latched onto to suggest I have 'significantly improved' which suggests they are incompetent douchbags. However, that one thing is still a good thing, just a minor thing. It is leaving the house to socialize one every two to three weeks to play cards with friends. This 'socializing' aspect that improves mental and emotional wellbeing.

Isolation all day for weeks on end only leaving the house for doctor appointments, neuro appointments, phsyio and the pain clinic is not good at all. You get no real interaction with other people. Day in and day out you are all alone in the house all day. And less and less do you even want to leave the house.

leaving the house means going out into a bright, loud enviroment that will just amp up the pain dramatically. And it is not fun. It can make a person miserable pretty fast. And driving constantly gives me vertigo which also makes me pretty miserable all the damn time.

So it takes some effort to consciously choose to go out and interact in the world. Choosing at least an enviroment that will be Less painful for one.

But there were times I could not stay long because it just became too painful. There were times the noise and lights were too intense for me too handle. My friends have kids and kids just are not quiet creatures by habit. So I have a migraine when I go. I have to take more medication just to go at all. And more to just stay. And even that is not always sufficient.

Yet.... it does make me happy. I enjoy being there. I laugh. I have fun. I enjoy there company. I leave feeling mentally and emotionally better than when I got there, despite the pain. I know it is good to do things and have a life, despite the pain. As long as you pace yourself. I understand that.

So it was a small step. And a good one. But a 'significant improvement'? Hardly. That would be if I was able to drive and run errands. And leave the house on my own. And socialize once or twice a week. And have a life. And drive myself to appointments. And... how about this... Have Less Migraines. So they are morons. But the point is, getting out of the house and socializing is good for our mental and emotional wellbeing. It can be really simple things. Like going out for coffee or lunch. I was told it could even be going out by yourself to a coffee shop and just being around people. Things like that.

I don't particularly like insurance companies. We as the chronically ill want to improve and will do things to help improve our wellbeing and health. Many things. Many will not have an impact on the pain just helping us deal with it a little. But they don't care if we can deal with it better, if it gets better, if it could get better... they don't have the time to wait. They just want an excuse they can use to get you off their list. It is pretty pathetic. All they had to do was wait for me to finish my treatment with the pain clinic, but apparently they think they know better. And clearly they do not. No idea who they hire at these places but brains must not be a prerequisite. Just ruthlessness I expect.

Patients with #fibromyalgia had worse #cognitive function than those with rheumatoid arthritis

According to a presentation at the American College of Rheumatology Annual Meeting people with fibromyalgia had a median rating for cognitive function that is significantly lower than in patients with rheumatoid arthritis and reported more symptoms of impaired concentration.

According to the researchers, the largest difference between the two groups was in distraction by background noise, poor reading comprehension, difficulty following directions, trouble following conversations and difficulty concentrating.

FM patients also reported significantly more difficulty than the RA group in areas of inability to retain patterns when adding, subtracting, multiplying or dividing; inability to recall known words; frustration when speaking difficulty expressing thoughts verbally and other problems with cognition. (Helio)

Katz R, et al. Paper #1112. Presented at: American College of Rheumatology Annual Meeting. Nov. 14-19, 2014; Boston.

Ehlers-Danlos syndrome video

Thorough video on Ehlers-Danlos syndrome.

#Insurance company tossed me off a cliff. #uncalled for.

Living with chronic illness means dealing with a lot of uncertainty. We have to deal with the changes in our health that impact all aspects of our lives and this can be quite difficult to deal with. Especially when we have goals and dreams to attain in the process.

I have been on long term disability from work for the last two years. I cannot go back to my previous employment, that is pretty much a sure thing. I can work from home or have some sort of part time work. And that is something I have to now consider. As in now. As in right this minute. As my insurance company has cut the strings and decided I have improved enough that I can attain some sort of work somewhere.

Which gives me a lot of anxiety, as it would any sane person. Financial stability and disability are not friends. We are constantly trying to find ways to hold onto our budgets because it is difficult to be disabled and financially stable. That I determined when I went on leave and my income dropped. Now I have to replace that amount in three months and it will be, at the very least, a challenge. I do freelance writing and blogging and have done both for some time now, but finding the clientele to make that income will be quite the challenge indeed. I did immediately send a proposal to a FM magazine and group I wished to work with. I after all work a lot with this topic, live with this syndrome, and would love to raise awareness. But I likely will have to find some other at home work to supplement my income for some time in addition to freelance work.

Or I can appeal their decision. Which is even more stressful and tiresome and will just make me depressed and angry. But entirely possible.

We certainly have the option in these cases. Insurance companies are designed not to pay. We have to essentially force them to do so. We have the right to since we were the ones earning the income and paying for it in the first place.

I love the idea of living on my writing alone. I thrive on it. As you guys all well know given the amount of blogging I do. It fills a void in me. If we can find something that fills a void in us, that we have a passion for we should peruse it. Our mental wellbeing is a significant factor. We should have goals and dreams. No one said we cannot attain them. We simply have to go about things at a different pace with different methods.

I am, however, stressed. I would rather not like a time limit of 'no income at all' hanging over my head. I would rather have more control over it than that. As in, the pain clinics plan to have me attain this precise goal in the near future once I have progressed in treatment. And my psychologist agrees that working from home is literally the ideal conditions for me. So this was in fact the target. The stress of forcing myself to attain a certain income within a few months time, or struggle severely with financial stability, is not welcome.

Life. Unpredictable. Insurance companies? Predictable in there efforts to cut you off for any random made up reason they can find. Sigh.

I am thankful that I have progressed sufficiently in my pain management that my mood regulation is such that this turn of events has not crashed me into severe pain and mood swings. Nope. I am worried. Stressed. Yet, planning and thinking of ways to move forward with my options. I am pleased about that. Chronic pain can be significantly difficult to deal with in stressful conditions. The first time I dealt with this sort of insurance issue initially my mood plummeted like a rock. Just dropped. Not good while in pain. This time? I meditated.

Calmed myself down a bit and immediately went into 'How am I going to plan for the future?' What are my options? What needs to be done? What choices do I have? What do I want to do? What do I feel like I can handle? Balance it all out and consider everything and then move into a plan of action. I may not like the stress of a financial doomsday deadline but nor am I depressed and unable to think about anything. Two years ago... I was in survival mode barely able to function holding down my job and emotional stability with that sort of pain is difficult to manage. Not working, able to control my enviroment and sleep, learning new coping methods and pain management have given me the ability to lower my suffering, if not the pain. I believe that the exercise and pain clinic will do more of that... had they been given a chance. Insurance companies impatience to see a 'customer' back to work does not do them credit. These things take time. It is not like 'poof' the pain is gone! It is like a year later you are able to handle the pain better through various techniques.

I feel like this anxiety is common with us. We never know if we are going to get on disability. Then we never know when it will end... suddenly and we will have to deal with that. Then we have to deal with having a significantly lower income which is stressful. And an uncertain future. These are things I believe when someone looks at us they do not see. They see 'lazy'. Like we want to struggle financially.

My bad days and your bad days.

I realized immediately when I sat down at this pain clinic class that some of these people were like me, some were not as bad.... but one was definitely worse. She would love to have my bad days. I would not want her good days.

It is good to know, once in a while, that what your pain is an ordeal, that it is difficult to cope with and manage... there are people out there struggling with a pain condition worse than yours. Many of them. I like to think they will win that struggle and get some balance of life in there. And that if they can... I can too.

 I just know her battle is a difficult one. I makes me believe maybe mine is not quite as insurmountable.

And she had a fighting spirit to her. I like her chances. I wish I had that fighting spirit. But I don't. I have a practical spirit. Get it done spirit. Just do it. But there is no fire in my gut.

But there are indeed in this world people who would love to have my bad days. It makes me feel like even though I know those bad days suck balls... maybe I can succeed in winning some sort of life back.

Worst cases than me have fought this fight and done just that. Inch by inch they work the program and inch by inch achieve their goal. And their life expands a little on the way. And that is the aim... quality of life.

The #stigma of the #lazy

In the poster I created I confronted this stigma that chronically ill people are just lazy. We do not do enough to help in our own treatment. We don't exercise.

Fact is, many of us to many things to help with our chronic illness. We have a treatment plan of some sort. It constantly evolves and includes more than one thing usually. It can at times in our lives include a lot of things. Far from lazy.

But the fact is despite all that we are not lazy. There are other factors to consider here.

Fatigue: we experience a fatigue so far beyond tired normal people cannot even comprehend the word. It makes accomplishing anything an ordeal.

Pacing: We have to pace. We Cannot do a lot in a short amount of time. We have to do a little, take a break, maybe do a little more and then leave the rest for another day. Like my instructor in the pain clinic class said every else in the world is busy being the hare but we are the turtle... we have to get used to be turtles. We won't win races, but need to pace in order to not make things worse.

Dealing with it: We are not lazy because we are dealing with pain and illness that is beyond their scope to understand. So if we can only socialize a little or do small amounts of housework a day, or need to take rest breaks when shopping it is because our entire existence is profoundly different than a normal persons reality. We can't just Do things. We plan to do them. We prepare for them. We choose the ones we can do, like one social activity, and decline others so as to not over-extend ourselves.

So... lot lazy. They are the hares zipping around at their frantic harried pace and they cannot comprehend the tortoise that has to be careful, planned and slow. Easy does it. Slow and steady. We do. Just because the hare is an idiot does not make us lazy.

#poem: Window to the Soul

My most recent chronic illness inspired poem.

Window to the Soul

Beneath this wall
A pit of suffering
Hidden from all,
Blinding and writhing

A pit of suffering
Behind smiling eyes
Blinding and writhing.
What a pretty disguise

Behind smiling eyes
Hidden from all
What a pretty disguise
Beneath this wall

Who I am #Without #Pain

I like to think I know who I am, but when you think of all the fatigue, brain fog, neurological symptoms and pain that comes with migraines... exactly who would I be without them?

It is hard to imagine with daily migraines because you lose that comparison. Those non-migraine days. I seem to recall the last one I had, that is a migraine free day, involves a lot of energy and clarity of thought. So I imagine without migraines I would just be able to think more effectively... instead of through this mud with pain taking up half my attention all the time.

And let us not forget that being in pain all the time impacts how we perceive reality and our emotional states. My mood stability would be different. How I perceived time would be different. How I thought about reality would be different.

That is why when people say, I am not my illness... well, I know I am in part influenced by my illness. It and I have been linked for so long it has impacted who I am. Without it, them actually, I would be different. Just a fact.

When it comes to all pain I Know I do not know who I would be without it. I do not Know a body without pain. I understand most people are not aware of their bodies all the time via pain, but I am aware of my body during movements and sitting too long, or exercise, or standing too long... all these things will tell me a pained story. So I know I need to move, or stop moving. Or shift. Or adjust. It is a constant communication. I can't imagine that just stopping. I would wonder... what pain is normal then? What sort of pains I get would remain that are normal for my age because surely some must be. I also can't image the migraines just stopping. I am just so used to thinking through them. Knowing they are impending. Feeling the thick prodrome settle on me and my brain turn to moosh.

I think it is a pleasant fantasy, but since I will Not be without pain it is not something I should think about. More I should think about what I can do to help reduce the pain. What physio. What exercises. What will help my pain. That is all I can do. And all the things that can help with my suffering. Like they do at the pain clinic. Meditation and relaxation exercises.

I cannot know what I am without pain. I want to know how to survive it. That is a better question and challenge.

Uncalled for #Vertigo

I have been going into the city three times a week now for a few weeks. Mondays for a pain class; teaching techniques to cope with pain. Tuesday and Friday for physio the insurance company sent me to. It is a bit of a load.

And I am not driving. My mom has been driving me to All of these. All of them! Due to the chronic migraines and vertigo. Since I have been put on the calcium channel blocker the vertigo has been reduced but it is very unpredictable with motion triggers like extended driving, elevators, escalators... pretty much anything like that.

If I were driving it would be worse. But as it is, all this into the city and back for weeks is triggering the vertigo in an extended way. Three days now I have had episodic bouts of vertigo. All day long, but mild and pulsing and then suddenly more moderate. Today before we left I noticed it sitting down. Then in the city I could feel it standing up. Then my balance was shot.

However, with my medication it is in the mild to moderate range, rather than the moderate to severe range which is far more serious. Without medication not only was it more severe but the bouts would last longer. And the nausea that would come with it was pretty extreme.

I don't like it though. It is very disorientating. I feel all spacy. It affects my vision as well. Like your spatial perception gets distorted. Not to mention my auras can get very warpy when I get disorientated. You keep perceiving and feeling motion where there should be none. Just sitting still makes your stomach roll because you feel like you are shifting, or like the chair is bouncing. When you stand the ground feels spongy or like it is pulsing or vibrating. Then out of the blue it drops from one side, and you lurch or stagger to the side.

Problem is that it isn't going away because I keep going into the city. My brain isn't getting a break here.

And this would be the reason why I cannot commute to work. Or really drive at all long distances. Within the town we are in, usually, I can. Sometimes even that will cause mild vertigo... or it has, but I assume that is when I already have a migraine. Hard to say. It is just that unpredictable. I just know highway driving or driving for any extended time makes it that much more 'predictable'. The medication though has improved things and it is the only medication that touched the issue in the least bit.

Needless to say I am cranky about it because the sensation is just that freaking bothersome. Even trying to sleep becomes a boat ride you did not ask for.

Not my life

This sort of reflects my current mood.

It wasn't my day.

My week.

My month.

My year.

My life.

God damn it.

You come to this inevitable realization coping with chronic pain that you will never fix certain aspects of it. Like the pain of course. But also things you just thought maybe you would be able to overcome. Like perhaps having that career deal. Instead you have to compromise on something that will be a lot less satisfactory in order to just maintain existence. Not my life, I want to say. But it is, I respond. It is.

Yet fixating on all the voids we have is never the way to go. This quote does reflect how I think right now because I am frustrated with the process that doesn't seem to ever have any actual progress. That does not mean my life does not have positives that I value immensely. That I have chosen. Embraced. That somewhat fill the voids left by the pain.

I can only hope as I progress further I can fill more of these voids and have more satisfaction, despite the pain. After all, anything we can do to create a better quality of life is really a win. Because it is My Life. I have to do with it what I can. Squeeze the life out of it.

It is far better for us to live in the now anyway. It wasn't my day. This day was too painful. Not much got done. I had a hard time getting around and accomplishing anything. Just not my day. Tomorrow?  Well, that might be a better pain day. It is a bad day, not a bad life. Not the life we may have chosen, but the life we have, right? If it wasn't this struggle, it would have been another. Life is like that.

#Migraines and the MOH state... as common as stated?

Medication Overuse Headache: Inaccurate and Overdiagnosed

However, the entity “medication overuse headache” (MOH), as defined in the article, is misleading and inaccurate. Current diagnostic criteria for MOH only require abortive medication use on 10 or 15 days/month (depending upon the drug).2 What is not needed is any evidence that the abortive actually causes an increase in headache. Medication overuse (MO) often occurs among people with frequent headaches. However, MO does notnecessarily lead to increased headache.Diagnosing MOH is not an easy task. MOH diagnosis must require an individu-alized assessment of the patient’s medication and headache history.The epidemiologic studies of MOH are not valid,as they do not differentiate MO from MOH.
A number of years ago, all abortives, including non-steroidal anti-inflammatories (NSAIDs), were implicated in MOH. We now realize that certain drugs (NSAIDs and triptans) are less likely to cause MOH than others. Opioids and butalbital compounds are the worst offenders.Although simple NSAIDs usually do not contrib-ute to MOH, they continue to be included in the MOH criteria.
Patients often are given the label of MOH simply because they admit to regularly consuming over-the-counter analgesics or a triptan. Many patients who fre-quently use these medications do not suffer from MOH. There are a number of variables, including genetics, age, type of drug, and so on, that help to explain why one patient suffers from MOH, whereas the next patient does not.
For many patients with frequent headaches,behavioral techniques and preventive medications (including Botox) are inadequate.Our current preventives often provide little relief and frequently cause unacceptable side effects.We do not have any preventives that were initially developed for headache. One long-term study indicated that only about half of migraineurs found any preventive helpful for longer than 6 months.3,4 Declining efficacy and increased side effects often lead to discontinuation of the preventive. Many physicians are quick to blame the patient for causing
MOH. The patients are told that they are suffering from MOH because of a particular medication, even though (1) they have only been taking that drug for a short time,(2) the headaches did not increase once they began the medication, or (3) drug withdrawal did not lead to a lessening of the headaches.
Physicians often instruct the patient to only use the abortive 2 days/week.The patient usually responds,“that is fine, but what do I do the other 5 days? I have to function.” Many headache specialists and neurologists maintain a rigid posture, refusing to allow more than a bare minimum of abortive medication. The patient either suffers or drifts elsewhere
Much of what is written about MO and MOH is con-fusing, with little basis in fact. These are arbitrary terms without scientific validation.Of course we must try to mini-mize abortives. Patients on frequent abortive medication should be withdrawn for a period of time, which is easier said than done. However, many refractory patients would have zero quality of life without their (frequently used) abortives.
The current criteria conflates MO with MOH. As a result,MOH is wildly overdiagnosed.An inaccurate label of MOH may harm the patient. Patients with the MOH diag-nosis often are denied the only medication that is helpful. We could redefine MOH using scientifically validated criteria. Alternatively, we could drop the term MOH altogether.

I think a lot of people with chronic migraines have been waiting for This to come out for some time. Given they have been told they are in rebound if they use more than 9 triptans a month. More than 9 NSAIDs a month. No more than two a week of triptans... or rebound!  Apparently we all rebound at the drop of a hat... which We know is Not true, so how can they not know this fact. We know some medications are fine and some not fine. We know some cause problems and some do not. It is a touchy subject with us for a reason because neuos use this like crazy to get us off medications, we need to function, when we were not rebounding to begin with.

Thinking about #work from home

My psychologist said I should begin to think of at home work I could possibly do as a new career. This is because he said I am no longer really competitive in the work world. If I were to go look for a job it would be difficult to find one due to my chronic illness, even if I were to severely limit what I told a perspective employer. Plus there is limited part time employment I could conceivably due to make sufficient income

What he said reminded of what my previous employer had said to me once. The woman had said a lot of not pleasant things in my time there but she did say one thing that was brutal and also true at the same time. She said due to the economy if someone was to be laid off... it would be you. Like I was the weakest link due to my short term leaves and sick days. And she was right. I was hardly dependable as an employee. It wasn't exactly a  nice thing to say mind you. Since it was something I already knew. Companies will try to get rid of you in any legitimate way that they can. Feel the love? Not so much.

Finding a job with these issues then becomes a problem. Working for yourself in the home is a pretty damn good solution to that problem. First it makes for a perfect flexible schedule. Second, it makes for the perfect enviroment as you get to control all the factors.

What I will find to do though is the question. It has to be sufficient to compensate for what I make on leave. Interesting would also be welcome. There are many options to choose from. They all have advantages and they all come with some risks. It is a good time for me to be thinking about it however.

The abyss

There is a reason I love this quote and it has nothing to do with its original context, although I do love Nietzsche.

It is that there are times when you look into a deep, painful subject, it is like it turns back on you. Like you cannot think about it without getting immersed within it.

You cannot conceptually think about pain, without thinking about Your pain. And being in pain, thinking about it, makes it worse.

This is what I think about chronic pain. The abyss. You stare into it because you need to cope with it, grasp it, understand it in order to live with it. Yet it seems to curl back into you... and you get sucked into this spiral of 'what does this pain mean?' or 'what if this pain never ends?'. The abyss will gaze back into you.

It is inevitable because we live at the very edge of the abyss. We stare into it on a daily basis. And at times, we get consumed by the intensity of that all-consuming pain. All never-ending aspect of it all.

#Costochondritis and #fibromyalgia

It turns out one of my physio exercises is giving me chest wall pain. It is a pain called Costochondritis. When I first developed it in my early twenties I was working as a baker with a lot of heavy lifting and repetitive arm movements.It gave me a great deal of pain that grew and grew and extended to longer parts of the day. Until I finally got a doctor to diagnose it, was unable to work and was put on a boatload of anti-inflamatories.

Costochondritis is inflamation of the cartilage that connects your ribs to your breast bone. It can be mild or extremely painful. It can be stabbing, aching or burning. People often mistake it for a cardiac event. In fact, had a taken a triptan that first day I did that exercise... I would have assumed it was my heart. Pain is the same. Thing about Costochondritis is that when you aggravate it over and over, it lasts longer and longer. It was just happening at night, well after I did the exercise. Hard to see the link, but I am familiar with the condition so the third day it seemed rather coincidental I was getting these chest pains at night. Now they are right in the evening, so earlier, even though I am doing the same amount of exercise with the arm movements.

Aside from fibromyalgia typical causes of Costochondritis are chest trauma, repetitive trauma and viral infections. It seems pretty common in FM, such that some researchers believe that is another cause, but either way, it makes it worse. Around 60-70% over people with FM have symptoms similar to Costochondritis. Which is decidedly odd when you consider it because FM does Not cause inflammation. However, it does have tender points and the ones beneath the collar bone may be an issue. Or trigger points.

Normally this condition clears up fairly quickly with treatment, with FM it can be flared up repeatedly and when it does it can endure.

Pain in the chest wall and ribcage are the main symptoms. Which get worse with exercise and activity, taking a deep breath, sneezing or coughing. Pain can also spread to arms and shoulders... again mimicking a heart attack. 

Treatment is anti-inflamatories. Which will not work for me, because I cannot touch them. So clearly I have to work on my physio workout in some way.

The #migraine attack

It is difficult sometimes to get the post across that migraines are a neurological disease and not a headache.

Oh, you have a headache again?

First, try every damn day.

And it is a migraine.

Here is the thing. If you have migraines you know what it is like. That insane throbbing pain. The sound and light sensitivity. The nausea and at times vomiting. Vomiting was a serious issue of mine when I was younger with migraines. I had to get the migraines triptan abortive medication that melts in your mouth (such as Maxalt) because the pill form had No time to act I would get so violently ill. I am 'lucky' I have more nausea than vomiting issues these days. With the added bonus of vertigo, which does not help with the nausea. I have migraine with aura, so I do get the aura phase... from the visual light show to the tingles running up my face and hands. Now a migraine is one-sided pain technically, but it moves for me to become all head pain. You eyes hurt. Your temples hurt. Your jaw hurts. Your neck hurts. Your teeth hurt.

Why is this not a headache? Because migraines are an attack. They have phases. Prodrome, aura, headache and postdrome. They vary in intensity and duration. People with migraine without aura, obviously do not get the aura phase. People with silent migraines do not get the headache phase. So there is variety, but there are stages to the attack. They have mapped the process in the brain. Like a wave of electrical activity surging along. This is not muscle tension. Quite frankly I believe cluster headaches should have a different name as well, because that word headache just really downplays the excruciating pain people with clusters have.

Language is important. People miss the point when they are talking about apples and you have oranges. Which is why people are always surprised when I express a symptom of a migraine... they cannot comprehend how a 'headache' can manifest such bizarre things. We are talking about a neurological event here. The rules are different. Pain is a fraction of the game.

A Whisper Away #Poetry

A Whisper Away

Just a whisper away
Pain’s hidden tears
Smiles with edges that fray
Silence weighs the fears

Pain’s hidden tears
rules all the sorrows
Smiles with edges that fray
stealing all tomorrows

Rules all the sorrows
Smiles with edges that fray
Stealing all tomorrows
Just a whisper away

Where have I gone? #Poetry

I was trying out a new poetry format and came up with two short poems. This is one of them. The format has some repetition in its form, which I sort of think works for some.


Where have I gone?
Shadows today stretch away
reflections of the past said and done
And here I stay

Shadows today stretch away
Pain lingers in the mind
And here I stay
Feeling lost and blind

Pain lingers in the mind
Reflections of the past said and done
Feeling lost and blind
Where have I gone?

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...