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Thursday, July 28, 2016

Chronic pain and personality

There are parts of a person's personality that are static through the passage of time and others that can fluctuate. If you are Introverted, chances are, to some degree, you will always be introverted. Yet I wonder how chronic pain over time changes us outwardly and internally. Constant pain changes a person. Medications change a person. Until you find you are no longer who you were. Some of these changes are from the coping process. We do what we need to, behave as we need to and act as we need to in order to function in the outside world. From this we develop a façade of wellbeing to distance others and ourselves from our pain.
So how does personality affect how we cope with chronic pain?

The Big Five Personality-

How we respond to stressors can depend on our personality type. The Big Five looks at Openness, Agreeableness, Neuroticism, Extroversion and Consciousness.

Neuroticism is a factor where people who score high tend to be nervous, insecure, worry a great deal and low scorers are more calm, relaxed and secure. People who are high on Neuroticism tend not to cope well and choose ineffective coping strategies. They engage in a lot of self blame, have difficulty with problem solving, practice more avoidance when stressed. Perhaps it is their high level of emotional responses that hinder their ability to choose healthy coping strategies for the right situations.
Those high on the Extroversion scale of things however, tend to be quite effective copers, perhaps because they use a variety of coping strategies. How a person rates on the Big Five can affect how they will choose to cope with stressors. For example someone low on Extroversion, would rather retreat, avoid and self blame. I can attest to that. Retreating and self-blame are my forte. Someone low on Openness might have difficulties finding effective coping strategies and less inclined to try them. The fact is if we use negative coping strategies and have problems with problem solving it could easily lead to hopelessness and depression.
Therefore, if our personality inclination is maladaptive to our reality of living with chronic pain, then we must consciously think about our habitual reactions in order to consciously find a way to adapt.
‘To the extent that a chronic illness challenges core beliefs, integrating the illness experience into their pre-existing beliefs should promote psychological adjustment. Cognitive processing has been used as the phrase to define cognitive activities that help people view undesirable events in personally meaningful ways and find ways of understanding the negative aspects of the experience, and ultimately reach a state of acceptance. Attempts to find meaning or benefit in a negative experience are ways patients may be able to accept the losses they experience. Focusing on the positive implications of the illness or finding personal significance of a situation are two ways of finding meaning in the illness. When considering meaning-making coping, one must distinguish coping activities that help individuals to find redeeming features in an event from the successful outcome of these attempts.’ (Link)
We may be inclined to avoid the problem, engage in wishful thinking, disengage and retreat, instead of actively engaging in the world using several coping strategies.
I am an INTP using MBTI (Carl Jung, Katharine C. Briggs, and Isabel Briggs Myers) and that reflects me perfectly, or it used to, or that is me on the inside. I am reserved, private, prefer my own company or a few friends, prefer deep conversations, philosophy, abstract theories, living in my head, am not very emotional and altogether too rational. That is me on the inside. It is how I interpret the world and even how I interpret my illness. I think about pain, about the price I pay surviving it and the coping process itself, rather than allow myself to connect emotionally to the experience. Therefore, one way I cope is to distance myself emotionally from the pain. My façade of well being is one that is radically different from who I am on the inside, yet it developed as a defense mechanism to laugh off my pain to others so they would be unable to see the emotional price chronic pain costs me. Again, what coping strategies we develop based on our instinctual personality traits, can be beneficial or negative in coping with chronic pain. For example, by laughing off and minimizing my pain I get the benefit of distancing myself emotionally from the pain and not worrying others, or getting negative remarks from others, yet at the same time this façade makes it extremely difficult to express my pain and emotional impact honestly. Due to the rational vs. emotional nature of my personality I somehow view expressions of emotion either inappropriate, embarrassing or a weakness. So with the MBTI factors of thinking vs. feeling and introverted vs. extroverted play a role in the instinctive defense mechanisms we choose when coping. Someone more extroverted and high in feeling might feel free to express their emotions but feel overwhelmed by them, anxious more prone to finding some sort of external release to vent emotional tension.
So what can happen to our personality when coping with chronic pain?
A) The Pain Haze- one thing that happens when you are in acute pain is your ability to interact with others and your environment becomes severely limited. You are in survival mode. For example, if someone were to have broken every bone in their body I would not expect them to have an informed conversation with a priest about Nietzsche. Other people will literally see you shutdown, your personality becoming dimmed and your awareness hindered. Loved ones will say they do not even recognize you, you become a completely different person. This is essentially a zombie shut down mode, where none of your personality shines through.
B) There are a few psychological disorders than can develop which then influence your personality and your worldview- Basically facets of your personality help people deal in different ways to stressors. With chronic pain, a constant stressor that then affects all aspects of your life, your defined, habitual responses kick in. However, few of us have the skills and coping mechanisms that enable us to deal with this long term stressor, as a result certain emotional issues develop. This can start off by bringing out the more negative personality traits in your existing personality; “Scientists believe that chronic pain often leads to chemical and structural changes in the brain triggering mood swings and even personality changes. The changes are often manifested in the form of depression or anxiety. The psychological changes also induce feeling that the original pain “hurts” worse.” (Link). What psychological issues that arise may have something to do with your innate personality.
1) Depression: This is a very common occurrence in some form when suffering from chronic pain. Beginning slowly with insomnia, fatigue and irritability. Because some mild depression signs may be seen as normal aggravations from dealing with pain it may be difficult to catch in ourselves or know when to seek additional treatment. When depression worsens there comes the sense of worthlessness, hopelessness, guilt and suicidal ideation.
2) Anxiety: may be just increased worry about work and loved ones to irrational fears. Perhaps you might not even realize that a racing heart and trembling can be signs of anxiety.
3) Panic disorders: Symptoms can include feelings of shortness of breath or smothering and this can lead to hyperventilation, dizziness, tingling of the hands, feet and lips and even fainting. It can include experiences of a racing heart, chest or abdominal pain and the feeling of impending doom.

“How can anyone with a significant degree of chronic pain only be affected physically? Pain makes you feel tired, mentally fuddled, irritable and often depressed. It affects you mentally and emotionally as well as physically. Many of the effects come into play quite quickly. If a family member changes from relaxed and easy-going, to irritable and worried by continued pain, how many weeks will pass before family relationships begin to change? Similarly, an employer who had confidence in a promising employee does not take too long to change his or her attitude to one who constantly looks tired and strained.” (Link)
Therefore, chronic pain literally changes your personality to others because of the difficulties in coping. Others may begin to see you as someone that is always tired, frazzled, confused and absentminded. Or conversely they may see you as fidgety, nervous and high strung. You begin to define yourself that way and soon your habitual personality traits shift. Most facets of our personality are not fixed and other traits while fixed over time change in intensity.
C) The external perceived behaviors: People are not defined solely on who they think they are, but how others perceive them by their behaviors. Others would describe me as; engaged, chatty, nervous, humorous, talk about anything and everything, absent minded, flighty, and most definitely the goofy one. Because that is how I act, partly because part of my facade is to laugh and goof off and partly because that is what I have become... more charismatic and engaged, than introverted and reserved. The pain drives me to distraction and I get all shaky, fidgety with energy, chatty and emphatic. That is not to say this change is or that I do not like how I am now, just that it is profound how endless pain, coping methods and meds mix together to create a different persona. Because people see me that way, they interact with me that way, and it is who I am. Yet, on the inside, I still feel like the person I was. I am, to a degree, the person I was when I am alone. In the end I have to wonder what is the illness and what is me?
D) Life view: That is not to say all personality shifts lead to mental and emotional problems. Not so at all. “For example, people who have a serious illness may report that as a result they have found a new appreciation for life or that they place greater value on relationships. Patients may also develop an explanation for the illness that is more benign (e.g., attributing it to God’s will). While cognitive processing theory constructs have been applied to adjustment to losses such as bereavement (e.g., Davis et al. 1998), these constructs have received relatively little attention from researchers examining coping with chronic illness.” (Link). The very fact that we must make so many sacrifices for our health can lead to appreciating all the things we can do. Certainly as we learn to develop positive coping strategies we learn to live a more fulfilling life that considers all our needs, instead of being driven towards a goal and ignoring all other considerations. Coping with a chronic illness makes us look deeper into ourselves than perhaps we ever would have before, which then leads to more sympathy and understanding of others. Therefore, some of our coping strategies enrich our lives and have very positive results.
One thing that cannot be denied is that pain affects our personality in the long run, just as when we are learning to cope our personality affects how we react to pain. Still, it is odd to think that our outward personality can be so fundamentally different from our inward one. And I am left thinking who the am I now? My core self has changed beyond recognition. If you took away all the medication would I be different? If you took away all the pain would I return to who I was? Does years of coping, different ways to deal with pain in the world, different facades, change a person's personality fundamentally, more so than life would normally? One thing is for certain, the pain would have crippled me or killed me had I not changed the ways I did, but then it became less of a coping strategy and abruptly a personality change. It is bizarre. And I am neither of these personalities and both. Maybe pain just makes us all crazy in a way, changes us in unforeseen ways, some positive and some negative. Otherwise how would we survive it? We would not. The center does not hold, it cannot hold. And we cope and we change and hopefully we survive.

Wednesday, July 27, 2016

I am strong. But I am tired

This describes me in this moment. 

I am strong. I will do what I have to to get things done. Hell, I'll smile while I do it. I will take that pain, wrap it up in me, and go forth and conquer the day. It won't feel like victory though. It will feel infinite. 

How long is forever? Every minute is forever, when you are in pain. So work is infinite. 
Nevertheless I do it. Because I must. I am strong, I say to myself insistently and repeatedly. 
But I am tired, I whisper back.

If pain can seem infinite in a second. Then fatigue can weigh a ton. And mental fatigue can feel like my brain has given up on that thinking thing. And I am tired of struggling. Of fighting to work through the day. Of the pain itself. I am just so tired. I feel like I could sleep for a thousand years and it wouldn't be enough. 

What to do? Well when you are tired of it all it is because you are stressed. Coping with the pain has put a strain on you. On me. We need to take some time for ourselves. For ourselves. We need to do something that is for ourselves that is not work and is nothing productive in the least. So no housework or lawn-work. 

  • Take a nice nap. Sometimes naps help with mental fatigue. I highly recommend them. But only short ones, because long ones will mess with your regular sleep cycle.
  • Take a bath with Epsom salts- soak some up that magnesium up and just chill in the tub for a bit. My spouse likes this too but without the Epsom salts. But for me, they are soothing for the muscles. 
  • Do a relaxing activity of something that you enjoy. Reading, coloring, knitting, video games, writing, blogging, photography, Pokémon Go.
  • Go for a walk or some mild exercise. It can be rejuvenating and helps with fatigue, mental and physical. Two bird one stone with Pokemon Go, if that is your sort of thing.
  • Do some meditation to de-stress.
Any or all of these. Some or one. Just something for yourself. We need to get out of that routine of coping and pushing and struggling and trying and doing. We just need a break for ourselves to rejuvenate.  

And we should make time for ourselves every day. An hour a day to do some of these things. It is part of self-care in fact. We do so much. We push ourselves. We get stressed from dealing with our pain and illness while having to function. Our body is stressed from the illness constantly. We need to engage in things to counter act the stress we are putting on ourselves constantly. We deserve self-care and self-care is as important as medication and other treatments.

I am feeling it myself today. Just drained to my core from pushing myself. And so I am doing one of my favorite activities blogging and then after some fiction writing. Before bed some meditation to relax me.

Monday, July 25, 2016

New anxiety

I have never had anxiety before. Aside from the anxiety associated with public speaking, of which I was terrified of. Anxiety about when my pain will hit has also never affected me. It will strike when it strikes and i will cope with it when it comes.

So it surprised me suddenly that I have been waking up with morning anxiety. It is like a surge of emotion, unpleasant overwhelming emotion, that socks it into my chest. Right as I start to wake up I get it.

These are the symptoms of morning anxiety as per Healthy Place:
  • Rapid heartbeat
  • Feeling weak, faint, or dizzy
  • Tingling or numbness in the hands and fingers
  • Nervousness, sense of terror, of impending doom or death
  • Feeling sweaty or having chills
  • Chest pains
  • Breathing difficulties
  • Feeling a loss of control
  • Fatigue
  • Insomnia
  • Trembling
  • Mental confusion
What I am getting is my heart is going wonky for sure, but what I really notice is this overwhelming feeling... that impending doom feeling. That is what I get. There is a feeling of loss of control. 

So what the eff is causing this anyway?

The article on  Healthy Place lists three things

  1. Cortisol- Essentially Cortisol, a stress hormone, is produced in the morning hours. If we are stressed, then more is produced and this makes us feel anxious. 
  2. Low blood sugar
    “Another reason why symptoms can be worse in the morning is because your blood sugar is low when you first wake up. You have gone all night without food. It’s important to maintain a constant blood sugar level because the brain uses sugar, also known as glucose, as its fuel. If blood sugar levels are too low or drop too fast, then the brain starts running out of fuel.”
  3. Environmental considerations: like loud environments and alarm clocks startling you awake. 

My psychologist believe the anxiety I have stems from thinking about the pain I have to work in that day. And it is giving me anxiety. I am not sure about this. Since the anxiety starts when i am barely even conscious yet. Just become unconscious and BAM anxiety.  

It does however, concern me. He recommended doing relaxation or meditation directly after waking to hopefully get these episodes to stop.  

I wonder if this is how anxiety begins... with these small attacks in the morning and it just builds from there. I don't want anxiety. So i will do what I can to follow what he says for it. It is just so unusual an experience for me. Interesting to note Cortisol levels in FM are higher than normal, so maybe that is why FM so maybe that is the reason and nothing to do with what I am thinking, since I am actually not even alert when it happens. 

All I know is that it isn't a pleasant feeling. When i get it I try to immediately calm myself down and relax. I fear it getting more severe, so right away I go into my relaxation mode. 

Saturday, July 23, 2016

Lack of continuous sleep in Fibromyalgia #BlogBoost

Fibromyalgia has some pretty distinctive sleep disturbances associated with it not to mention comorbid sleep issues. It is one of the key factors in the syndrome... our inability to attain refreshing sleep. I wrote a post about it here. So it interests me that they have done some recent research in this area. One of the important things about our sleep dysfunction is that since it isn't presenting like regular insomnia the treatment likewise has to be different. Lack of sleep, as we are all aware, can cause a lot of symptoms. 

So the recent Canadian study in Ontario took a look at 132 subjects (109 insomniacs and 52 without any sleep difficulties). During the two night analysis their sleep was recorded by polysomnography; electrodes placed on the face and scalp of the subjects enabled the researchers to look at sleep latency, the stages of sleep, sleep cycles and duration of sleep.

With fibromyalgia and insomnia subjects have issues falling asleep, compared to controls and they have fragmented sleep. They have frequent night wakings. Here is specifically what they found with the differences between Primary insomnia and FM insomnia.

Objective: To Investigate the differential kind of disturbed sleep in patients with fibromyalgia (FM) versus patients reporting sleep Difficulties with primary insomnia (PI) and Who patients do not report disturbed sleep (pain-free controls).Materials and Methods: Patients (FM: n = 132; PI: n = 109; normals n = 52) Were or recruited for different studies. FM and PI patients Were preselected to meet the sleep disturbance criteria. Patients with sleep or circadian disorders Were excluded from all groups. Polysomnography Was Conducted at screening, During two consecutive nights. For this post hoc analysis of polysomnography, length and frequency (duration, number) of wake and sleep tips Were Analyzed, together with traditional sleep Measures; a "tip" = consecutive 30-second epochs of sleep wake gold. Data are mean ± SD.Results: FM patients and PI HAD Decreased total sleep time and slow-wave sleep (SWS) and Increased latency to persistent sleep (LPS) and wake time after sleep onset (WASO) versus controls (P <0 .05="" each="" for="" span=""> FM patients versus PI HAD more SWS (48.1 ± 32.4 vs. 27.2 ± 23.6 min; P <0 .0001="" 29.8="" 31.3="" 70.7="" and="" em="" lps="" min="" nbsp="" shorting="" vs.="">P
 = 0.0055), WASO purpose comparable (107.7 ± 32.8 vs. 108.6 ± 31.5 min). DESPITE comparable WASO, FM patients HAD shorting (4.64 ± 2.42 vs. 5.87 ± 3.15 min; P = 0.0016) more frequent wake goal ends versus PI patients (41.6 ± 16.7 vs. 35.7 ± 12.6, P = 0.0075). Sleep duration Was similar end for FM (9.32 ± 0.35 min) and PI patients (10.1 ± 0.37 min); Both populations HAD go short sleep duration end versus controls (15.7 ± 0.7 min; P <0 .0001="" both="" br="">Conclusions: Increased frequency of wake and sleep tips and wake Decreased end duration, together with LPS and Increased Decreased SWS, Suggests That Sleep in FM is caractérisé by year Inability to Maintain continuous sleep goal Greater sleep drive Compared with PI. Clinical Journal of Pain
The ideal goal then is not only getting us To sleep but to maintain continuous sleep. 
There is research to suggest that the issue lies in difficulties with deep sleep interference. "Alpha-delta sleep is the abnormal intrusion of alpha activity (8- to 13-Hz oscillations) into the delta activity (1- to 4-Hz oscillations) That olefins slow-wave sleep. Alpha-delta sleep is Especially prevalent in fibromyalgia patients, and there is evidence Suggesting que la Irregularities in the sleep of These patients May because the muscle tissue and bread That characterizes the disorder. We constructed a biophysically realistic mathematical model of alpha-delta sleep.Imaging studies in fibromyalgia patients Suggesting altered levels of activity in the thalamus has motivated thalamic model as the source of alpha activity."
Now, I hardly needed a study to tell me I have difficulty falling asleep and maintaining it. It has been a long term issue of mine since I was quite young. Not to mention pain being a factor as well. The main thing is that by researching it there can be new targets for medication. I had heard they researched a sleeping pill for people with FM. I have not heard anything since then, so maybe nothing came of it... but it was designed to keep us asleep. Maybe that is still on the go. Either way it is interesting to know primary insomnia is not quite the same as Fibromyalgia related insomnia. 

Friday, July 22, 2016

More than my battle, but the battle is significant part of me #BlogBoost

We have to make the distinction that we are more than what we battle with. I am more than my pain. More than my migraines. More than my fibromyalgia. More than this battle. It is important to cognitively separate ourselves from our conditions. To know we have a life to fit into our illness. Choices to make that ensure we have a life in there. Living With our illness.

Yet, when I think about the fact we are more than our battle... I think that battle is a massive portion or our Daily Existence.

Not our Identity. Which is significantly more substantial. I am a so much more than my illnesses. My illnesses have, of course, changed me as I have adapted and reacted to the constant stressor in my life and compromised to enable myself to cope with the illness. Naturally changed me in many ways. But obviously I am a fully developed person that goes far beyond my illness.

But the battle is a massive portion of our Daily Existence and that is something that is pretty fundamental. I am constantly wading through pain of around 7-9 on the pain scale. That means my choices on what I do and how I do it in the day are limited and inhibited by that pain. So while I may say I am more than my battle the battle molds my day. Mold how I think, how I act, what I do, what I plan on doing and when I do things and certainly how I do things.

So people say at times, in different ways, don't let the pain choose your life for you. Don't be afraid to live your life. Don't not do things because of the pain. Live your life, because the pain will be there regardless. Fact is this; pain designed this game and we have to play by its rules in order to survive. Some of those rules? Pacing. Moderation. Don't exceed limitations. What happens when you don't play? More pain. So the battle is a constant game of trying to keep the pain from exploding into more pain. It is the rules. We know we are not in charge here.

We also know as long as we follow the rules we can live our lives... as gently as possible, within moderation and carefully pacing. We do not fear living. People who believe we fear our pain, like doctors often say, such that we fear living... don't grasp that we have to live differently. It isn't that we didn't want to go out with you, but we decided to do a different thing... and we can't do two things... not with pacing. We don't live in fear of the pain, we Are in pain. We are not lazy, we are doing exactly what we should be doing to not increase our pain. Just a pained lifestyle is all.

That is how I see the battle. As a specific lifestyle we are locked into. One that means we have to live slower than our fast paced society deems normal. One that demands we look at our limitations and not exceeding them. I am more than my battle... but I live By the rules of my battle, so as to maintain less flare ups of pain. And we have a lot of rules we add in there to help reduce our suffering. We add to the game. The lifestyle becomes ingrained in us, just as the battle is a permanent fixture. Bringing the pain and us trying to reduce or manage it as best we can. It is a significant part of our lives. Continuous and endless.

Nevertheless, we are more than what we battle with. We are also vastly changed by what we battle with. Pain experienced for a long period of time changes people. This battle is a brutal one. One we don't always want to survive. We are more than our battle And our battle made us more than we were.

Wednesday, July 20, 2016

Brainfog, when it isn't just about the pain #Blogboost

I have been struggling with work lately. And by lately I mean always. Always struggling to function through the pain. Always not quite doing it.

My psychologist said well I cannot compare apples to oranges. I cannot compare myself to people doing the same job perfectly healthy. Nor to myself when I was healthy-er. And it did occur to me that this job I am now doing wouldn't even be a challenge to me when I was younger and in less pain than now. But the pain now has eaten away at my cognitive capacity with the FM and the chronic daily migraines. Not enough space in the brain to focus on much other than tolerating the pain.

Here is the Thing.

The thing is I am permanently this person that is confused, befuddled and living in a pain haze. This is who I am. No matter the job. Good days and certainly, by far, on bad days.

And I don't like it. I don't want to be this person. This person frustrates the hell out of me. I just want to do my job... hell A job effectively and efficiently as possible. Hell I want to excel at what I put my mind to, as it was before the pain became such a living force. This person is plodding. This person's communication skills get rather tangled up. Perhaps why I love writing so much is that I don't feel the cognitive sting so much as I do in reality. The sharp snag to the working memory, the complete lack of short term memory and where the hell is that long term memory any way. I want to get more sleep, so I can shake of this infernal mental fatigue and this damn exhaustion. But I can't because I can't ever sleep decently and because it is a damn permanent state of affairs. Pain inhibits cognition and chronic pain therefore chronically. So I am stuck thinking through molasses forever.

So yes, I understand completely not to compare myself to people without chronic illnesses and pain.  Or even to myself in my lesser state of pain. Never a good idea. However I do rather trash myself because I cannot function the way I want to function. I am constantly limited and inhibited in my capacity. I am not content with the way I am functioning. I am aware of my capacity and very aware of this thick mental lag, fatigue and sludge in the way of it. Just like I am aware of the profound difference between the ability to function on a good pain day and a bad pain day. Well a good day, still not a great day. I think we are all aware of that wall of fatigue and pain in the way of our thinking. All the little errors, glitches and failure to communicates that happen every single day.

That is my frustration at this point. The fact that with chronic pain, migraines specifically, I seem so cognitively impaired all the time. With migraines that can vary neurologically as well. Sometimes it is straight up aphasia that impairs my capacity to communicate. Sometimes the sensory distortions make it difficult to focus on reality. Sometimes the confusional states make it difficult to comprehend things. Mostly though it is straight up trying to just function through pain, when pain is taking up all that brain capacity.

I'm not saying there isn't things we can do for things like brainfog and fibrofog. I wrote something up about fibrofog Here. What I am saying is it never seems like I get a break in this area no matter what I do. Likely because the pain hasn't given me a break. I have been reading a book on cognitive abilities and it recommends things like mindful meditation, exercise and brain games. None of which get rid of the pain that is triggering the issue in this case, but never hurts to keep the brain going strong when clearly it is having issues. For example, I already do mindful meditation for pain and if it can give me a cognitive boost that would indeed be a bonus, wouldn't it?

I really miss the clarity of thought that comes with not having a migraine. It has been years since that was the case. But I do remember the last day it occurred. I remember how clear my thinking was. How crisp. How quick. How accurate. Then the cloud sank back down.

Monday, July 18, 2016

How do you do it? #BlogBoost

How do you do it? They ask. And then say "I wouldn't be able to handle all that pain every day. A migraine every day?" Not counting the FM which they often do not mention because they don't know what they would feel like. But worst headache ever captures their attention.

And I say... "You get used to it." Because you do. You have a baseline pain all the time and it is your new normal. You develop Tolerable pain and Functional pain. And what to do with Intolerable pain and Non-functional pain. You get used to it. I say that though because it sounds better than 'I have no idea how I do it. I just do. Because I have to. And god damn do I wish I didn't have to.'

But the real answer is WE MUST. We were never given a choice in the matter. It was put upon us and we had to learn the hard way how to cope with the chronic pain  as best we could.

WE MUST because in order to live, move or do anything we have to do it with the pain. So we learn what to do with the pain. We make room for it.

When the pain gets to us and depression set in our brain changes to WE MUST NOT... endure this suffering.

That is is why we are always fighting for the surface, because if we stop for a moment, we will begin to drown. Chronic pain is heavy and it is drag you down and we will sink.

It seems to me after you 'must not' you don't fight for the surface as hard anymore. You know the allure of not fighting anymore. A part of you doesn't strive as hard because the pain always wins. Or has less survival instincts left after sinking for awhile. It is like your brain, instead of WE MUST is WE MIGHT... because it crossed a line into not wanting to exist and once it did, it is a possibility that is always there in theory. You must live with the pain and cope, or you might, you might not.

We want to survive, so we must. We want to life, so we must. We must cope with the pain the bast we can. Or we push through the pain. We exceed our limits and make it worse. Because we feel we have to work as hard as everyone, do as much as everyone.... with the pain of course. Our job though isn't to push though the pain or increase the pain. It is know we have pain that isn't going anywhere we Must deal with it, cope with it, pace ourselves and stay within limitations.

Chronic pain is that sort of survival battle sometimes. We have to deal with it, because there simply is no other option. But... it then occurs to us sometimes there is an option... to just not exist and have pain at all. Then we have to battle those thoughts as well as the pain. Sink or swim. Sink or swim. We are always battling for the surface and never making it. Always close to sinking, but never drowning... hopefully.

Sunday, July 17, 2016

Guest Post: 5 Tips for Explaining Migraine Pain to Others

“You look fine.” For some reason, this seems to be a typical response to telling a friend or a loved one that you have a horrible migraine. Suddenly you must justify your condition.

I think all chronic migraine sufferers have experienced insensitive and sometimes outrageous comments made by those around us. A migraine can be making you feel like your head is about to split open, but all of its strength and vengeance is unfortunately invisible to those around us. 

Those who do not understand what it is to live with migraine pain — or live in fear of the next attack — simply see our outward appearance and assume we must be “fine.”

It is frustrating and hurtful when someone you confide in does not understand your struggle and pain, and some may even question if you are in fact suffering at all. For some reason, people assume whatever they don’t understand is not worthy of their empathy.

I have found it helpful to try and communicate very carefully when talking about my migraines. How you explain your migraine to someone can actually help them understand your condition better, and allow them to imagine what it would be like if they themselves were dealing with the same condition.

Walk a Mile in My Shoes

Here are five key points you should make when explaining your migraines to someone.

1. Migraines Are Not Just Headaches

Comparing a headache to a migraine is like comparing a soft summer rain to a hurricane. Unless you have felt this level of pain, you cannot make a fair judgement.

Migraines are a neurological condition and are thought to involve abnormal functioning of the brain's blood vessels. Approximately 37 million Americans suffer with migraines, and women represent 70 percent of those diagnosed.

When explaining, I say, “Imagine a pain where you seriously wonder if something is happening within your head that will kill you. It’s like something is exploding. You can’t see well. Light makes it worse. You are in so much pain you can’t hold down food.”

Often, understanding begins to blossom in people when I actually describe what the pain fundamentally does to me.

2. You Can't Tell by Looking at Me

FYI, you can’t “see” someone’s pain. I look fine because I push on through my day most of the time and continue with as much of my life as I can.

I say, “If this struck you several days per month, wouldn’t you try and keep living your life too? It doesn’t mean I am not in agony. It means I am trying to keep going. If sometimes I’m not much fun to be with, remember I’m still me — stuck inside this body that is going through incredible pain.”

3. Migraine Attacks Are Variable and Unpredictable

Just because I was at that barbeque yesterday and feeling fine, does not mean that I didn’t wake up today with that dreaded veil of pressure and ever-increasing pain in my head.

Migraines come on for various reasons (stress, hormonal changes throughout the month, diet, drinking a glass of wine, etc.) so there is no indicator one day that the next will also be pain-free. I must live my life day-by-day, never knowing when I will be under attack.

4. Though There Are Treatments, Nothing Cures Migraines

So far, at least in my experience, decreasing the number of migraine attacks per month and sometimes limiting the severity is the best I can hope for.

There are several medications (like Excedrin migraine, Aspirin, Imitrex, Aleve and even Botox) to treat migraine, but there is no cure as of yet.

5. I Need Your Compassion

I say, “Imagine unbearable pain that can strike any time. What kind of compassion would you need from your friends and family? I don’t want anyone’s pity, but I long for compassion.”

Everyone appreciates having someone sympathize when they are in excruciating pain, but nobody claims to have a migraine to get sympathy.

In fact, anyone who would suggest that probably lacks the compassion required to provide sympathy. What I seek is understanding and compassion.

If you are surrounded by people who don’t understand your migraines, you are not alone. People simply do not think about what they are implying or how their words can hurt or even insult you.

The more you can generate awareness about this chronic condition, the more compassion and kindness may be offered in place of disturbing remarks and disregard for migraine pain and suffering.

Barbara Leech is a mother of four who has battled lupus for more than 30 years. Also diagnosed with migraine, fibromyalgia and Hashimoto’s thyroiditis, she considers herself a survivor of all things: chronic illness, divorce, starting over. She is passionate about family, faith and small victories. You can find more of her writing on NewLifeOutlook.

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