Thinking of myself beyond the pain. #Positive traits and #Gratitude

Let's play a game in positive reinforcement. Name ten characteristics about yourself that you value. We think to often about the negative facet of our health. Lets for a moment think about our awesomeness.

Here is mine:

  1. Intelligent
  2. loyal
  3. trustworthy
  4. laid-back
  5. polite
  6. open-minded
  7. reasonable
  8. low-maintenance
  9. goofy sense of humour
  10. creative

 Reflect on situations linked to those words and who you are as a person. A whole person beyond your pain and illness. Sometimes we feel worthless because we are not 'functional' enough. But look at that list and see all those worthy traits you have there that are part of who you are. Traits that other very likely value in you.

Also consider the gratitude journal to help with mood. Picking three things a day you are grateful for.

Mine today looks like this:

  • Thankful for the time to edit a novel I am writing. To have that time to work on something that is enjoyable and destressing for me.
  • I was really stressed to day and so very thankful for some serious snuggle time with my can Charlie.
  • Because I am so very stressed I am thankful for blogging since it helps me work out my issues I have in a positive way. I had heard to was good to write down negative things people are experiencing as a release, to get the mind to stop thinking about it. Worth a go.


Exceeding our limits



The tragedy in chronic pain is often that we learn to understand our limits and that we need to moderate our lives but due issues with insurance companies, issues with disability or issues with accommodation in the workplace we are unable to moderate our work. This means we always exceed our limits. This can lead to more chronic pain. More chronic pain can lead to more difficulties with sleep. It can lead to depression and anxiety. In other words, exceeding our limits does not work for us.

Yet we are forced to push through the pain without any options. Having no options for me has led to depression and suicidal ideation. I understand the pain clinic and every psychologist I have ever seen says I cannot work full time and when I cannot work at all. I also understand when it comes to insurance companies I am utterly powerless. I have a keen understanding of this lack of power. People say you have to fight the insurance companies. Easy to say. Hard to do when you are in a lot of pain and depressed.

This is how I felt when I was on long term leave and they canceled my coverage and told me I had to return to full time work. To which my psychologist said I was not ready for at that time, and in fact when I was ready not to full time. And the pain clinic said not to full time. But insurance companies do not listen to common sense or to specialists apparently. They listen to money. So I returned. Inevitably this did not work for me. I exceeded my limits. I was depressed. Sleep deprived. And then I tried to commit suicide. So now I have to appeal to go back onto long term and it makes me very stressed out. How do i say you made a massive mistake that could have killed me?

The fact is, we exceed our limits and when we do our entire lives suffer for it. We cut our everything in order to survive work. No leisure activities. No socializing. Just tolerating that pain and crashing when we get home. Surviving not living. It is a tragedy what we let die inside of us while we still live... but this is not our fault. If we were able to establish proper coping strategies and Not exceed our limits we would be able to have a life as well. Like when I was on leave I was able to do mindful meditation, exercise, see my psychologist regularly, do my physio and able to socialist for short periods of time once a month. Manged my depression as well. I was Coping. The pain was the same but I was managing it. Completely unlike the raw desperation of working with that pain. Unable to do anything but work and crash, work and crash... catch up on sleep on my days off and start all over again.

We all wish we could have a career, have financial stability and work full time. I know I do. I Wish for it. But I am not capable of it. That is the distinction. I try and try and try and I fail because I simply exceed my limits. And it is simply becoming dangerous to my wellbeing to do so. I accept what specialists and psychologist say about this. They are right. I simply have to come to terms with the fact I cannot do it. In some sense it is a relief to be honest. While I wish I was capable of having a career and the money that comes with it, I really do not like the extra pain, depression, sleep deprivation and suicidal thoughts. I do not like the raw desperation. The struggle every day to just get up, get to work and get though each and every hour. There is a relief knowing I won't be forced to do that because it is expected of me.

But of course, there is that insurance company. And that appeal. And the stress of having to go through that. And the lack of funds while doing so. And the sense of powerlessness that comes with it.

Reframing the Diagnosis and Treatment of Chronic Pain: Toward a New Mode...

Don't make a fuss



I once had an ovarian cyst that ruptured. I had no idea what it was at the time of course. It was just this brutally painful abdominal pain. Could have been appendicitis or even something worse. A normal person would have gone to the ER with such severe, acute pain. I didn't want to make a fuss.

I once had chest pains that mimicked a heart attack so closely I wouldn't be able to tell you any different. They radiated down my arm, through to my back. Were quite painful. Affected my breathing. I had been having erratic heart rhythms that previous week. I had to lie down from the pain. After it was down blood rushed through my body in a whooshing tingle and gave me a headache. And my heart went all wonky. During and after a normal person would call 911. I didn't want to make a fuss.

I could give more examples but do I really need to? Where did this come from? Well I know already. I have been chronically ill and with chronic pain most of my life. And for many of those years I experienced varying amounts of stigma from the medical field. My pain was minimized. It was dismissed. I was told I was 'too young for treatment'. I was told 'I was just depressed'.

If fact, the very first time I experienced chest pains of an entirely different sort I was completely dismissed by a doctor. You see I have fibromyalgia and people with fibromyalgia can develop a condition called costochondritis, which is chest wall pain due to inflammation. I did, but didn't know that was the cause of my pain, only that I knew it wasn't a heart attack due to its longevity. However it did get worse and I ended up having problems breathing so off to the ER I went. Where the doctor told me it was not a heart attack, obviously. Not that he tested for this of course. And I asked if it had anything to do with FM, since that seemed probable to me. And he replied he 'didn't believe in FM'. And therefore... he didn't test for Anything. Completely dismissed me. Now costochondritis occurs all on its own from a virus or from strain from lifting heavy items... and therefore if he bothered to look based on my symptoms he would have found it. If he bothered to eliminate other causes of chest pains and looked for inflammation that is. Like I had recently when they found something similar but inflammation around the heart. Instead he found out I had a pain condition he believed was 'all in my head' therefore I must simply be imagining this other pain. 

And that is the problem. I responded to all these doctors and medical professionals. I began to minimize my own pain. I did not want to be seen as exaggerating so I made it seem like  it was less than it was. Ironically. I did not want to be seen as complaining, so I didn't mention the pain they were not bothering to treat often. Not that it mattered since they did nothing for the pain for my entire youth and 20's and part of my 30's. Too young for medication you see. But I wanted them to at least pay attention to other symptoms so they would not miss things. Like asthma. And hypothyroidism. In order to do that, I had to ensure they didn't think I exaggerated. 

So I didn't make a fuss.

When a symptom occurred I ignored it. If it persisted for a long time I might mention it. If it was severe I would mention it... if it did not go away. If it was acute pain, I would do nothing about it in the moment but I would mention that it occurred at my next appointment. Usually. 

This is hardly productive to me, but it is a learned behavior.  They taught me through their indifference. And now I ignore important things because I don't want to make a fuss.

Self-Care


Self-care is vital to living well with chronic illness. And I suck at it. Instead I push myself. I crash. I push myself. I crash. Over and over again. Knowing what you Should do, does not help me DO it.

Self-Care is "Self-care is a process of adaptation in response to learning about oneself and about ways to live well with illness. Developing capacity to self care impacted significantly on the way participants experienced illness, their view of themselves and of their future."

So what stops us from our self-care?

A study Annals of Family Medicine looked at the barriers to self-care and found:

RESULTS Participants’ responses revealed barriers to self-care, including physical limitations, lack of knowledge, financial constraints, logistics of obtaining care, a need for social and emotional support, aggravation of one condition by symptoms of or treatment of another, multiple problems with medications, and overwhelming effects of dominant individual conditions. Many of these barriers were directly related to having comorbidities.
CONCLUSIONS Persons with comorbid chronic diseases experience a wide range of barriers to self-care, including several that are specifically related to having multiple medical conditions. Self-management interventions may need to address interactions between chronic conditions as well as skills necessary to care for individual diseases. 

 Financial constraints are an important issue. You are told to take your medication, you can't afford to so you take less. You are told you have to decrease your work, but you cannot afford to. Lack of knowledge is an important one. I want to a pain 101 class at a pain clinic to help us understand pain and how to cope... none of it was new to me having been in the pain game so long but it was new to the others. Yet, you have to go to the pain clinic to get it. Doctors do not hand out this information. I found the information myself, or learned the hard way. Having more than one condition where treatment of one hinders the other is difficult indeed. For example treating my FM with painkillers could cause rebounding and make my migraines worse, don't treat it that way and the FM pain is significant. Medication side effects are always an issue. So is constantly switching and trying new medications and this new side effects.

How can self-management help a person who has a chronic illness?

Once you’ve decided to take an active role in managing your illness, you and your doctor can work together to set goals that will lead to better health. These goals will be part of an overall treatment plan.
Pick a problem. Take an honest look at the unhealthy aspects of your lifestyle. Start with a particular behavior that you’d like to change in order to have better control of your illness. For example, you might decide that you don’t eat enough vegetables, get enough exercise or take your medicines as your doctor tells you to.
Get specific. Once you’ve identified a problem, state a specific goal for dealing with it. The more specific your goal is, the more likely you are to succeed. For example, instead of saying, “I’m going to exercise more,” decide what kind of exercise you’ll do. Be specific about what days of the week you’ll exercise and what times you’ll exercise on those days. Your new goal might be: “During my lunch hour on Mondays, Wednesdays and Fridays, I’m going to walk 1 mile in the park.”
Plan ahead. After you’ve stated your goal, think of things that could go wrong and plan how you’ll deal with them. For example, if it rains and you can’t go to the park, where will you go to walk? If you plan how to handle problems in advance, they won’t prevent you from meeting your goals.
Check your confidence level. Ask yourself, “How confident am I that I’ll be able to meet this goal?” If the answer is “Not very confident,” you may need to start with a more realistic goal.
Follow up. As you’re working toward your goal, check in regularly with your doctor to let him or her know how you’re doing. If you’re having trouble following the plan, talk to your doctor to figure out why. Your setbacks can be learning experiences that help you make a new plan for success.
One of the most important things to remember is that you can change your behavior. Even though your illness makes you feel helpless at times, if you work with your doctor to set goals and you take responsibility for following through with them, you can make changes that will lead to better health.
When it comes to this outline of self-care I actually do succeed well. The pain clinic told me to exercise so I did. I started very, very slowly and very, very slowly increased my time. They told me to meditate. I did. And made it a daily habit. Give me goals, without the stress of work, and I will achieve them.

What I am not good at is normal self-care. Sometimes I am great at it. Sometimes I feel guilty and just don't listen to myself. Feeling like I am wasting time better spent doing something else. Like I am not worth it. But we are worth self-care.

Rest/Nap: we are chronically ill. Chronic pain and other chronic illnesses. We are fatigued.  We need our downtime. We need to rest at times. Yet I feel guilty when I do so. Nevertheless I need the rest due to the immense fatigue.

Pacing: Pacing is something I have known to do since my early twenties. I understood FM meant pacing myself. And when I do it, I manage much better. When I don't I can flare for days. Sometimes I choose to go to an event or do something and accept the painful consequences of days of pain. Like going on a vacation, knowing the pain that comes with it. But sometimes I just push myself because I feel like I must. Like when working full-time. I do not pace, I cannot pace... I just push through the pain, crash, push through the pain. But housekeeping is very paced. I clean one small thing one day, something else the next... eventually starting all over but no cleaning sprees for me. Pacing is vital for us to follow.

Limits: We must know our limits. When exercising we find our limit and slowing, carefully push it in order to carefully improve. In life we have to understand where our limits are so we do not exceed them extremely and cause ourselves a great deal of pain. Keep ignoring it, more pain.

Exercising: Never exceed your limits, or you will feel a great deal of pain and feel like you are failing. Go for a ten minute walk to start. Then after a week or two increase it by a few minutes, then a few minutes more. Very carefully. But it is important self-care because it helps mood, it helps with muscle deterioration which makes pain worse and motion it good for us. Yet I find working full time this is impossible to maintain. Because then I exceed my limits.

Meditation: For me this is part of my self-care along with relaxation breathing. It has many benefits but mostly I do it to reduce stress.

Hobbies: I am told by my psychologist it is important for mood and self-care to spend some time every day on things we enjoy each day.

 Pain plan: This is the part of self-care that we need for high pain days. fibro flares. 9-10 migraines. A specific list of things you do, or follow, to help you manage the pain. For example my migraines: migraine balm on my forehead, temples, jaw line. Ice on the neck. Lay down and rest. Either watch TV like binge on Netflix or read a book. Make the room as dark as possible. Take my triptan before a lay down. That is my action plan I enact for a high level migraine. Often before I go for the book or TV I will do some relaxation breathing or mindful medication while I let the ice work on my neck. 


You can have different self-care practices. Just remember it is important that we do self-care. Managing our illness is important as anything else. If we take the care for ourselves other things fall into place.

Nauseated beyond belief


Since my last status migraine last month I have had a very intense persistent migraine aura. It is this warping effect in the air. When overlaid over reality what happens is that it makes every object look like it is shimmering and moving side to side. And it makes solid colors look covered in twisting warping light. This is in addition to my other persistent migraine aura. What I have noticed is this one is significantly worse in all types of light and calms down with very, very little light... like outside at night. But it is making it very hard to see well. Making it hard to read on the computer. Even when I increase the size of the text, still shimmering.

The problem, aside from decreasing my capacity to see detail and stationary objects, is that all this constant Motion is giving me insane nausea. To the point of vomiting. I can't seem to manage to eat much. My anti-nausea med zofran isn't working. I have been trying gravol instead and if I take enough it seems to stop the vomiting side of things. It is bad enough migraine trigger nausea. Bad enough damn vertigo bouts trigger worse nausea. But now a persistent migraine aura is triggering Constant nausea?

Honestly makes me want to smack people who think migraines are just a headache. Giving the issues I am having are so beyond the pain. Not that the pain isn't a massive issue, because, damn, it is. Just that the migraines cause so much more than that.



Light of meaning in the darkness of mere being



I think chronic illness has made me struggle with meaning for a very, very long time. Just when I think I have something meaningful it is something I have to compromise away. It is very hard for the center to hold. To have this sense of self that is stable. In a sense our health can frequently change and this can cause havoc in our lives. Stresses and changes. Financial strains. Complications. Obstacles. We have to re-create our identity when we have to make massive life changes like things that affect our capacity to work. And sometimes we resist this. Sometimes we struggle with it.

I certainly struggle with it. To the point it all feels meaningless at times. It is rather all or nothing thinking we are supposed to avoid. If I cannot do this, then I am worth nothing. Well, bull. Meaning is created in many different ways. If I cannot do one thing I have to replace it with other meaningful things. I have to re-create my identity.

That 'darkness of mere being' is to be really avoided. We have to have a sense of value, worth, meaning, purpose, identity... moving towards goals of some sort. I hope to find that core meaning in the darkness of mere being once again. Give me that sense of inner stability.

My #InvisibleFight #iiwk15

 My invisible fight is migraines. I have more than one chronic illness, but for the sake of simplicity I will focus on one.

The fight begins when people say 'It is just a headache' because they do not know how intense a migraine is. They diminish it by called it that.

The fight continues when people claim 'It is impossible to have so many migraines. You just can't get them every day like that.' Well it is possible. Chronic migraines are more than 15 a month, and yes, even up to daily.

 Then there is the 'you smiled and laughed so you must not be in pain'. But happiness does not mean I am not in fact in pain. To someone with temporary pain maybe they would not smile and laugh with the level of pain I endure. But over time, pain is a constant ordeal... we still feel things. Our mood still fluctuates. We may have more stress. Be more likely to have depression and/or anxiety. But we can smile and be in pain. We have facades, to hide the pain from the normals out there.

How about 'You worked one day, so how can you not work today'. A) because I can't miss worked for every migraines. Therefore there will be times where I will have to suffer immense pain and work and B) not all pain is 9 or 10. Sometimes it is 8 (horrible and I Will make errors and be slow, but will be there) and 7 (this pain is constantly a distraction but I feel somewhat functional.) Get it?

My invisible fight includes Migraine Associated Vertigo (Vestibular Migraines) . I think I must look drunk and is the most visible of my symptoms to be honest. On top of that I also have Persistent Migraine Auras which obscure and contort my vision. This is utterly invisible, difficult to explain but can really compromise my vision.

People cannot tell I am having a migraine. Plain and simple. I hide it very well. Aside from 9 or 10ers which is obvious since I lay inert doing nada wishing the pain would end. Also I don't speak. Don't laugh or smile. And the room is dark with no lights on. However if I am out in the world the migraine is Not that level. Likely if it is that high I triptan that migraine anyway to at least lower the level. People claim they can tell I am having a migraine, but they are wrong. The tell they refer to is my eyes... but it is fatigue, which yes they look when I am having a migraine. But I also have insomnia and painsomnia. So sometimes I don't have one yet, since my migraine occur early afternoon usually, not always.

Guaranteed they doubt I have migraines at all. If they ever had one they would never imagine working with one. Fact is we have to. We have no choice. Chronic pain changes all things about pain. Pain you normally would never work during, tolerate for long, do anything with... if it goes chronic, you have to just deal, and do all those things and more because, well, welcome to your new life.

Another thing about this invisible fight. It is not just the pain. It is the nausea, vomiting, brain fog, concentration issues, aura (sensory and visual), photophobia, phonophobia, sensitive sense of smell, depression, fatigue, digestive problems like diarrhea, frequent urination, sensitive painful skin (scalp pain.), facial pain, dizziness, vertigo.

I have lost days, months and years to this pain. Time I will never get back. One has to wonder how many more days will I lose to this disease? The disease that takes, and takes, and takes.






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