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Sunday, May 22, 2016

Hoarding pain memories and gratitude journals

For this poster I used an image that is a happy memory for me, to remind myself of happy memories. Because pain and negative memories are actually easier for our brain to remember. It is wired that way. It needs to remember anything that might help with survival and anything that might have traumatized us, caused us pain or suffering sticks in there. They have done studies on it. Negative connotations... we remember. Positive images, not so much.

It presents a problem when every day it is;
More pain
Butt-ton of pain
Also pain

What are we thinking about and focusing on? All that past pain. The present pain. All that future pain. The joys. The happiness. Gets subsumed by pain, suffering and negative moods.

This is why we have to maintain our moods. We are exposed to more negativity and stress than most people are. We have to actively do things that will maintain and life our moods. Which then helps us cope with future pain.

Another things we can do is a gratitude journal. So our brains are focusing on all this pain and suffering. We have to reign it in and force it to focus on the good parts of each and every day. What we are grateful for. What we are thankful for.

Like, I was thankful I was able to sleep in today to get some much needed rest.
I was thankful I could get some writing done today on my blog, fiction and do content creation... time to myself to relax and do some activities I enjoy.

How to go about this is any way you want to. There are apps for it. I use Happier.
Here are some tips/

1) You don't have to do it every day. Even three times a week shows benefits.
2) You can be grateful for the small things and the large things. Just really think about what it is you are grateful for and even why.
3) Don't have a minimum. If one comes to you, fine. If five, that is great too. 
4) Don't wait for time to write them down, like at bed. Write them in the moment. This is why I find the app works well for me.
5) Focus more on people than things. I also put in there activities, because with chronic illness these are important and make me feel better.
6) Never put anything negative in there.
7) Give it a chance.

Science has reported that gratitude journals have these benefits:

  • Stronger immune systems;
  • lower blood pressure;
  • Higher levels of positive emotions;
  • More optimism and happiness;
  • More generosity and compassion;
  • Less lonely and isolated.
  • Reduces stress. ("Gratitude research is beginning to suggest that feelings of thankfulness have tremendous positive value in helping people cope with daily problems, especially stress," Emmons says. WebMD)
Maintain a gratitude journal. Emmons' research showed that people who keep gratitude journals on a weekly basis exercise more regularly, report fewer physical symptoms, feel better about their lives as a whole, and maintain greater optimism about the future.WebMD

Saturday, May 21, 2016

Fear factor

The only thing to fear is fear itself. Well, maybe. Fear and chronic illness can comingle and create what doctors refer to as 'sick behaviors'. The fear of doing things because of the pain it will potentially, or will, cause.

Here is the thing; there was a time in my life not too long ago when my pain was unmanaged and I was an excessive hermit. Still a moderate hermit. But I was quite reclusive. People would invite me out but the idea that the suffering would get worse, or just having to deal with that pain in a social situation made me cringe. Or worrying about getting a migraine when I went out. So I went out less and less and less. Friends faded away until most were just gone.

In trying to manage my pain I have gone to pain management classes and psychologists and they all say don't let the pain rule your life. Live your life. Fear of engaging in life because of the pain holds us back.

I wonder why though. Because a) the pain will be there regardless b) we are used to functioning in pretty high levels of pain. Why then would it stop us from moderate activities and moderate socialization. As long as we pace ourselves, have a plan and take medications with us. There is nothing to lose and a lot to gain. No loss if we have to leave early. No loss if we have to stop an activity early.

I have two examples.

Socialization: Socializing helps with out mood and decreases that pervasive sense of isolation we have. Even introverts need some social time, just not as much. With chronic pain and chronic illness we might have to select social environments that work for us. A BBQ at someone's house instead of a loud bar. That sort of thing. Binging with friends on Netflix over a concert.

We may turn down due to the fear the pain might get worse, that the pain will crop up due to the increased activity, worry about suddenly appearing and interfering and due to the fear not go out at all. But there will be pain whether you go or not. You have experience with pain and coping with it. You know how to cope and what not to do to make it worse. What activities and environments would trigger more pain or flares. You also travel prepared to treat any flare up of pain. And there is simply nothing wrong with leaving early when the pain peaks to a level that is non-tolerable and non-functional. But many a time you can enjoy yourself with moderate pain. You can have a good time, have some laughs and reduce some stress. Just be you for a moment.

When your pain is a high level of course you wouldn't socialize. But when it is moderate we shouldn't let the fear of pain stop us from living our lives and connecting with those around us. It is healthy and isolating ourselves definitely isn't. I can handle a Lot of alone time as an introvert, but I do need to get out of the house, out of my mind, every so often. As long as the socialization are pretty mellow I can handle it. I go for coffee with my mom. I play cards with my friends. We have a fire at our place with a BBQ.

Exercise: Exercise also works for an example because the fear of the pain makes us inclined to not even engage in trying exercise. Or when we feel the initial pain, we just stop. And it is a hard one for sure because I have never exercised without pain, except for just walks. And that is the clue there. Starting out slowly. With just going for short walks. To find your limit go for a walk and when you feel that edge of tired double back. That is your walk time. Slowly add to it as you go along. Try yoga and stretches. I do a stationary bike because the pain clinic wanted me doing a certain type of exercise. It is painful so I started very slow. 2min in fact was my max. And worked up to 20min over six months. Everyone is different though with their pain and exercise intolerance.

The fear tells us that it will always hurt. That it won't have any benefit. That we simply cannot do it because of the pain. The fact is they don't want us to lift weights for an hour or run a marathon... they want us to move. Mild exercise counts. When you exercise and you hit that alarm of pain, that is when you know you have hit the point to stop. You keep pushing to that alarm zone... and never farther than that... because too much will flare your pain for sure and we explicitly want to avoid that. So we want to just nudge that alarm but never pass it.

We know pain. We know our bodies. If it flares up from what you do. Do less. If you cannot do one thing, try something else. Find something that works for you. And increase by very small increments unless it is comfortable for you to do otherwise.

There are things we cannot do. And we know it. There are things that come with extremely painful consequences. But we don't want to live in a framework of 'can't' because we fear the possibility of pain interfering with what we want to do. It interferes with every single thing we do. We can't let it stop us from living. Living in a different way perhaps. In our pacing, moderated way of course. But still living our lives.

When you get invited out somewhere or to a family social event and you think 'I can't go' ask yourself why you can't go. Is it because you don't want to? Or because you fear how your pain will behave and how you have to deal with it? And instead of thinking Can't try thinking how would I be able to manage my pain and enjoy myself. Take a nap before I go to manage my energy? Take medication early and bring it with me? Mobility assistance tools or comfort accessories?

Friday, May 20, 2016

Depression, boredom and distraction.

Boredom Can Be Dangerous for Mental Illness

Believe me, I’ve been there, and I’m all too familiar with the fact that doing nothing can lead to feeling stir-crazy. While relaxation is essential, it’s also important to feel accomplished. Just don’t overload yourself when you finally get going. It takes a delicate balance to keep from being overwhelmed.

I was just reading something about how we should stuff our day full of things. Even when we lack motivation. That doing, helps get that motivation. Helps retrain our brain to feel pleasure from activities again.

I do know for a fact, at night just scrolling on the computer I am hit with the deepest, darkest of thoughts. My psychologist tells me to confront them on paper to confront how irrational they are. which I do. However, if I am writing all night... there is no space in my brain for these thoughts in the first place. If I am getting involved in the activities I enjoy again; writing, reading, blogging and so forth then I am keeping myself engaged in things instead of ruminating.

It is a process that has worked with me and primarily it is because my depression stems from my pain. When you are doing nothing, the pain is a beast that eats away at you and then you think about it and think about it ... and think some more. Since pain isn't a wonderful thing to think about, nothing good comes from this thinking process. Nothing at all.

However, in a sense it is also harder than you might think to do. Motivation is drained away by depression. What you once enjoyed is just flatlined. If the way to do is by doing then we should dip out toes into an activity with ten minutes. If we are not interested by 10 minutes we can put it aside and try again the next day. But usually ten minutes will stir some interest and get our brains engaged a bit.

You can try new things as well. I read, write, blog. But recently tried adult coloring books. And got back into some video gaming. Extend you passions and try some new activities. Fill your day with things. Work and activities. Keep your brain occupied.

As well as engaging in regular routines. Self-maintenance. House maintenance. Any errands that need to be done.

However, we don't want to be overwhelmed. Make the tasks that are necessary to be simple, paced and spread out through the week to be easily managed in small portions. Make the activities pleasurable ones you enjoy, or did, and engage in them for at least a half-hour. More if it is boosting your mood to get into something. Get your groove on.

Write in a journal this:

Three things I am grateful for:
One thing I accomplished today:
One goal I have for tomorrow:
Mood from 1-10:
Freeflow remarks:

It will keep you focusing on what it good; the grateful and the accomplishment you made as well as focusing on one future goal. The the remarks you can express your mood and things you are doing to improve it. Any exercise you are engaging in. What is helping you,hindering you.

Tuesday, May 17, 2016

Welcome to the storm

The thing about chronic illness is that it is the hardest damn thing in your life. Things will stress you out in your life. Major events will cause significant pain, grief, hardship and pain. But there will be great joys and happiness to compensate for that. Just like everyone else. What is different is this constant, everlasting stressor that you have to endlessly deal with.

Infinite care: Leading to long term maintenance. Moderation. Never exceeding your limits. Careful planning. Just essentially a life of infinite care. And to be honest less spontaneity. But there is some spontaneity because sometimes you feel moderately good and want to take advantage of that moment, that window of opportunity as it were. Which we cannot do when we plan because generally our illness simply doesn't like plans.

Medications: More medications. Changing medications. Alternative treatments. Other alternative treatments. And all the side effects that come with these. And sometimes you have to wonder if any of it is doing a damn thing. Sometimes I wonder if I went off of everything what I would feel like and then I remember, oh yeah, worse. But no one enjoys the medications. Quite frankly I have troubles with a lot of the alternative treatments because the research is generally not that great, I don't get results and often I get more pain.

Complications in the whole life spectrum: Money out of pocket. Lower income. Compromises. Best laid plans of mice and men often go array when it comes to chronic illness. Best not to think about what ifs and often those compromises are to improve our wellbeing, but doesn't change the fact there is compromises, often financial inability and money spent out of pocket on treatments.

Symptoms: Symptoms that don't even make sense. Random weirdness doctors can't even explain no matter how many tests they do. Until your file is volumes. Comorbid conditions. More comorbid conditions that even seems fair to be honest. Life should really have a limit on that sort of thing. Like maximum 3 health conditions per person. Then the pain. Oh the pain. Not even mentioning constant fatigue and lack of sleep. Weighs us down.

It is a life of coping really. It is our main focus. Welcome to the storm. Time to seek out your umbrellas. Because the storm doesn't end. And I think really acceptance is understanding the fact you have to move with this illness and not against it. Understanding you have to improve, not win. Make strides in a positive direction. Whatever way that means to you.

The stress of it has to be managed because it can really get to us. We have to engage in self care or we really do burn out. For me, if I do not manage this it leads to depression pretty fast. And hopelessness. Like nothing will ever help. Because it feels Massive. And what I have to understand is some self care goes a long way in helping me cope with the stress of dealing with the everyday pain of it all. Everything I listed above has an impact one way or another.

It is vital we rest when we need to rest. In particular if we know we are going to engage in an activity we need to prepare for that by having rest before and after, even by having a nap to prepare our reserves. It is important to understand guilt shouldn't enter the picture because it is fundamental we manage our energy levels and pace ourselves. I cannot stress enough how important pacing is to how we manage our illness and pain. When we push to far, even with general chores or too much work, we tip the scales and increase our pain too far into a flare up of symptoms and pain. Causing us to have to recover. And then we repeat. If we pace ourselves we can eliminate some of this peaking of pain activity. Not to say it doesn't happen for other reasons of course. And not to say pacing isn't damn hard, but we have to get into the routine of it. And when we rest we have to really rest. Engage in some meditation if it helps. Or relaxation breathing. Go someplace quiet and out of the way to just get that space needed. So hard to do and so beneficial. I was told to do this at work and still have not managed it but know it would help manage my pain there. As it does at home.

There are times when this constant, persistent nature of this illness exhausts me to my bones. I find engaging in distracting activities, that I can handle, to be the most comfort and mood boosting things to do. When my depression was at its worst, those were not even satisfactory. But I realize they are quite necessary for my wellbeing. It was almost like I needed my psychologist to give me permission to do them without guilt though. He was the one that said they were important for mood, for distractions for our self-worth. And for some reason I felt if I wasn't doing something productive I ought to feel guilty about that. Because my illness makes me feel so guilty all the time. Why this came to be I don't know. We are as functional as we can be. We know we have to pace and know the consequences if we don't. Even know we are in fact more productive if we Do. Yet we feel we need to push through the pain and do more and more, and anything for ourselves is just... not right. Because we didn't do enough. Not like we Could if we were well, right? Like we don't have a right to doing things for ourselves. And our own self-care and health. Like we don't matter.

If we are to make peace with our illness then we do have to matter. Then we have to understand, this is the chronic illness lifestyle and self-care is a part of that. Everything we do to cope is a part of that. Pacing is a part of that. Every little bit counts and is important to our wellbeing and that matters. So acceptance is knowing you matter and taking care of yourself. And I know I should take that advice myself.

Sunday, May 15, 2016

The pain price

Opioid Addiction Is a Huge Problem, but Pain Prescriptions Are Not the Cause

What Anderson Cooper's Show About Prescription Addiction Got Wrong About Chronic Pain

In response to Anderson Cooper's show I sent in this response:

Here is what I sent to CNN:
People with relentless chronic pain take painkillers as a last resort. Not a first, second... fifth. A last resort. It does not get us high. It slightly dims the pain so we can be somewhat functional in our lives. With unmanaged pain I has suicidal ideation and intent. Because that is what pain does when it is relentless and unmanaged. It exceeds your capacity to cope with it and every day you push beyond your limits. Until you wish desperately for the pain to end. You don`t have a life, you have a horrific existence. No sane person would want to live like that. When finally you get referred to a pain clinic to get a treatment plan; including medications, a psychologist to help with coping strategies, an exercise plan and so forth it is like finally someone cares about your quality of life. All this coverage in the media is making it out like addiction is this massive issue when only around 2% get addicted to opiates.(amend that to 10%. I forgot the specific stat there and had to look it up. 10% of the population as a whole is susceptible to any addiction) Less people are die from opiates than die from NSAIDs, which doctors are now comfortable to prescribe despite the side effects. They are taking away medications people need to manage their pain and this will increase the suicide risk, which is already high in pain patients. I can hardly see why that fact is so okay. Let them die, right? We are just the ones with an invisible disability. We don't matter. The hype of addiction... that matters. How you skew the story, that matters. How actual pain patients are getting affected by this? No one seems to care. It is shameful. People have the right to have their pain treated. They have the right to quality of life. I speak for my American friends. Who are treated like criminals at their pain clinics in order to get a refill. I am Canadian and I hope none of this madness trickles over the border. Living with that raw desperation and suicidal ideation and intent... is not a place I want to go again. Try doing a story on how they are being affected by these changes. How they are treated in ERs and at pain clinics. What chronic pain is really about. We all get ill, someday all of you will too. Maybe pain will be your disease. Wouldn't you want to be treated with some dignity? Wouldn't you want some quality of life?
This is because addiction has always been a problem for 10% of the population. Always. And if you read the first article I posted most who become addicted to painkillers are not becoming so by getting them prescribed to them in the first place. Addiction has and will be a massive issue that is complex and must be addressed by society. I recommend watching Russell Brand: From Addiction to Recovery.

But the other side of the story that is completely ignored is the massive amount of people being treated with chronic pain, which is very complex.

The suicide rate among people with chronic pain is known to be roughly twice that for people without chronic pain.Since there are 41,149 suicides every year in the 
U.S., according to the National Center for Health Statistics,  it’s possible that roughly half of these suicides are driven by pain. Not proven fact, but plausible hypothesis. This would suggest that perhaps up to 20,000 Americans a year with chronic pain kill themselves, which would be more than the government’s tally of 16,235 deaths from prescription opioids every year.  commonhealth

These suicide stats are worrisome because we have suicidal thoughts when our pain is not managed. Suicidal Intent when we lose hope that it will ever be managed. The pain just consumes our capacity to reason. Destroys hope. We lose so much to it, there is little left to live for. If it is not managed. What will happen when pain is not treated properly? When pain meds are reduced? Taken away? This number will go up. And THIS is okay?

This is why this whole issue has made people with chronic pain more invisible. Our care. Our quality of life. Our very lives themselves. Don't matter as much as the 10% of people who have the risk factor for addiction..  So yes, for temporary injuries, manage your pain prescriptions. Don't be all willy nilly with them. Makes perfect sense. But don't punish the pain patient. Don't make up stories that they are all addicts and drug seekers when we know for a fact they are not. When we also know for a fact untreated pain is a suicide risk.

When I hear stories of how pain patients are being treated in the United States it infuriates me. How they are being shamed for an illness they cannot control. Belittled by ER doctors who think they are drug seekers, and even turned away. Having to take urine tests to prove they are taking medications as prescribed and pill counts. How embarrassing and what bull. How doctors are telling them they can't have their medications any more, cold turkey, or have to be on less. And how they feel defeated, hopeless and scared about their future with that looming pain. How it sickens me that doctors are pressed to ignore the care of their patients because they don't want to be seen as handing out too many pain meds. The profound stigma enhanced by the media creating a public view that pain medications are worse than alcohol abuse. Leading to more judgement and stigma. What have you done? And who will suffer for it? Who will lose their lives for it?

I know this is a rant but you just see it over and over again. Prince dies... and must have been addiction because he had painkillers in his system. No one mentions he had chronic pain and maybe it was simply to manage that. Or that sometimes for a pain patient that is our choice for suicide as well. Before anyone knows anything they judged him as an addict. Because that is the cool thing for the media to do these days. Never mind all us invisible, silent sufferers just trying to live some sort of life with our pain. An endless battle we struggle so hard to earn a day. I can't think of the future because it looms with pain and that thought depresses me... or terrifies me. I just have to think, 'How will I get through This day of pain.' With my small accomplishments and little victories. At other times losing a day to intense pain. All those lost days adding up to years worth. Our lives are still worth something. This struggle should be worth something. We deserve some basic rights and quality of life. I rant because I know what it feels like to just want to end the pain. To think it. Plan how to end it. Then take that step into action.

I rant because I feel they are ignoring the massive problem right in front of their faces. The significantly more people suffering with chronic pain, who need quality chronic pain management. Who has our voice? Who is going to stand for us?

Saturday, May 14, 2016

Guest Post: 4 Things a Migraine Doctor Wants You to Know

4 Things a Migraine Doctor Wants You to Know

Good communication with doctors is vital to correct diagnosis and treatment. Sometimes, though, it’s hard to talk, or know if you should even go see a doctor. Here are some things your doctor would like you to know about migraine consultations:

#1 — Don’t Be Scared or Embarrassed
Talking to a doctor often involves subjects we’d rather keep to ourselves. There could be any number of reasons for this, from social phobias to a fear of hearing something serious is wrong, or just because we don’t want to appear weak in front of others. We may feel embarrassed we can’t cope, because it’s just a headache.
But doctors have seen and heard everything before, probably several times this week. They never view patients asking for help as weak, because seeking help takes a certain amount of bravery. Doctors understand the debilitating nature of migraine, so try to overcome any hesitancy.

#2 — Ask Questions
A well-informed patient is easier to treat, so never be afraid to ask questions about your migraine condition. These include:
  • What symptoms to expect, and which should prompt a return visit to the doctor
  • What symptoms you should treat as an emergency
  • What to do if worrying new symptoms occur out of hours?
Expressing fears and concerns is vital. If you don’t understand anything, don’t hesitate to say so, asking the doctor to explain again. It’s okay to repeat the explanation back in your own words, so you’re sure you’ve understood properly. Doing this helps prevent misunderstandings.
Ask about treatments, medications and possible side effects.  Make sure you understand different types of medication, such as whether it’s acute care or preventive.
In diagnosing migraine, much depends on how you describe your symptoms. Your individual headache pattern may prompt the doctor to order further tests to rule out other medical causes.
You can also ask how to keep a migraine diary or identify your triggers and what lifestyle changes might benefit you. Before you visit the doctor, it’s helpful to make a list of questions so you get the most out of your consultation.

#3 — Don’t Assume You Are Fine
While migraines are unpleasant, most are not dangerous and, if you are a long-term sufferer, it’s easy to dismiss every attack as simply another episode.
There are times, however, when symptoms change, which can indicate other conditions. Most are not serious but some may need urgent care. Knowing your migraine pattern thoroughly enables you to recognize the difference, and your migraine diary can help with this.
If you have experience of the following as new symptoms that you haven’t discussed with your doctor, you should make an appointment.
  • Feeling short of breath
  • Stiff neck, or new symptoms affecting the nose, throat, ears or eyes
  • Slurred speech
  • Dizziness
  • Confusion
  • Weakness or paralysis
  • Persistent diarrhea
  • Vision loss 
  • Numbness
More Serious Complications
There’s evidence that migraine is linked to ischemic stroke. Higher risk patients include women under 45, those who have migraine with aura, women taking the contraceptive pill, and smokers who have migraine with aura. The reason for the link is not known, with research focusing on underlying vascular differences or a tendency towards blood clots, among others.
If your migraine is worse than it’s ever been, or you have new symptoms such as loss of vision that doesn’t improve, you lose consciousness or experience persistent vomiting, you should seek urgent medical care.
Similarly, if your normal medication stops working, your episodes become more frequent or you experience unusual triggers such as when you sneeze, bend over, cough or during sex, you shouldn’t assume all is fine and will get better. Make it a priority to see your doctor.

#4 — There Are Treatments
There are no outright cures for migraine yet, but there are many treatment options to help manage the condition. They include:
  • Pain Relieving Medication: These include Triptans, a common form of pain relief for migraine that works by helping to constrict the blood vessels and block pain pathways to the brain. You may also be offered medication to help control nausea or dizziness. 
  • Surgical Procedures: Nerve Release surgery relieves compression of the nerves that trigger pain. Options include surgery performed on the Supra-Orbital Nerve (in the forehead), or the Greater Occipital Nerve (which provides feeling for the top and back of the head). Both are minimally invasive. Other types include pain blocking via tiny electrodes under the skin.
  • Botox: Just as for beauty treatments, injections in the forehead can block pain and bring long lasting relief from migraine.
  • Alternative Treatments: You could explore various health alternatives, including herbal treatment, massage, or lifestyle changes.
Communication is key when seeking diagnosis or treatment, so talk openly to your doctor and don’t be afraid to ask questions. You won’t be the first, or last, to visit the surgery with migraine.

Dr. Mark Khorsandi works at the Migraine Relief Center. They provide surgical treatments that reduce and eliminate pain for migraine sufferers.

Friday, May 13, 2016

6 things I would like people to understand about Fibromyalgia #May12th

There are a lot of things I wish people understood about Fibromyalgia I would like to share for this May12th awareness day, well the tail end of it since I am an insomniac,

We have ambition. Just like all the 'normals' out there we have ambition. Career goals. Things we desired to do with our lives. It is just the syndrome with the pain, fatigue and comorbid conditions interfered with that reality. We ended up making compromises and getting other jobs. Or we were forced to work part-time. Do flexible hours. Work from home. Or go on disability. You have to understand this was a hard sacrifice for us to make. It was one of those compromises that we feel stole something from us but we needed to make for our health. Not that we are lazy and living it up. No we wanted to have it all. A career and a way to manage our illness with it. It hurt to know we couldn't.

We look fine, but that is our Baseline pain. What you see when we look fine and are doing well enough to function is our Baseline Pain. It is the pain we deal with no matter what. Always there. We are not 'better'. We were not 'cured'. There is not fine one day, sick another. It is our baseline craptastic feeling of existence. So we feel we can deal with this and do slightly more moderated activities. Don't see this and assume why can't you do That all the time. It is a mistake. You are looking at a damn fine day.

We have flare ups. Flare-us of pain often come from pushing ourselves beyond our limits. Which we do because often we feel we have to choice. That we must. And sometimes we do it because there is something special we want to do and are willing to pay the inevitable pain price. A flare up is a large jump in symptoms and pain. We are low functionality on these days. We need downtime. We need rest. And we need to not feel guilty about this because we need to focus on self-care. I've had flare-ups that are just random. Hit me hard and I just had to recover like usual. Minimal activities, rest and self-care. This isn't an 'exaggeration' this is a painful event that can last for days.

We guilt a lot.  We compare ourselves to our past healthy selves. To other people. To a fictional self that never got ill and did great things we never did. And we feel guilty for clearly failing to be those things. We feel guilty about taking care of ourselves when we should be trying to catch up on housework or anything... to feel productive. Because are we not supposed to be productive to be useful? We never give ourselves a break. People criticize us with their stigma and lack of knowledge but we are far worse on ourselves than they ever will be. Getting used to an ill existence is a difficult task. And making us feel guilty isn't helping the matter, it is reinforcing the believe we should feel guilty, like a failure and shame at being ill.

We are tired. We have all consuming fatigue. Like walking around with a lead blanket all day wearing you down, making it hard to engage in activities and when we do... it exhausts us. We are running on empty from the sleep deprivation and fatigue combined. So we need to rest often. We need to take short naps to boost what little energy we have. This is not lazy. It is management of energy conservation.

Moderation.  We have to think about moderation in all things. We have limits and we know  what happens if we exceed them. We have to pace our activities all the time. We cannot rush through the day with several things on the menu planned. It simply doesn't work that way. We have limited energy and pain resources to use. We have to carefully decide what we have the energy to use on that day. People often do not understand this limitation, which for us is a lifestyle. Maybe they don't understand because they are in such a rush all the time and we cannot be. To do so leads to pain, flares and boom and bust pain cycles. All of which we try to avoid.

The thing with Fibromyalgia is that it is always there. It seems like every system in your body is against you. If it is not one thing, it is another. All over pain all the time, but also specific pain in some area that quite a bit hurts more than the rest. And flares that hurt significantly more than normal. We are constantly adjusting to this on a daily basis and managing as best we can in a body that fluxes with symptoms and pain constantly. For example over and above my baseline pain my knees and feet are killing me, I have extreme nausea and fought all day with IBS-D. Who knows what tomorrow will be like.

Thursday, May 12, 2016

#May12BlogBomb Work compramises

This year with Fm and chronic migraines I made a major change to my work. Let me first tell you want wasn't working for me.

I was working a desk job, which is about the only job I can work with FM. I tried many a job when I was younger working summer jobs and they were painful mistakes. So here I was working full-time in a job I should be capable do doing. Intellectually capable, yes for sure.

What I could not do was function. I could function through the pain when I was there if the pain was around an 7. That actually is my limit. 8 makes me have functional problems, memory issues, short term memory issues, long term memory issues, and making mistakes. And 9s I would not go to work at all.

I missed a lot of days to high pain days. Flare ups. High migraines days. Both. I mean a Lot. And I went on 7 leaves of absence doctors put me on for stress, pain to change treatments, two suicide attempts. And one long term leave when I knew I just could not handle it at all anymore. Because while I could function while was there, to some extent. I could not be There often. It was stressful. I felt guilty. My boss made me feel guilty for failing my customers, myself and my co-workers.

This is because I was Always exceeding my pain limits. Pushing through the pain. Boom and bust. High pain to push though, then cannot function at all as a result the next day. Then recover and do the same damn thing over and over again.

I did this for years believing something would change. Some med would help. Some doctor would help.

In the end it was the pain clinic that flat out told me I am simply not capable of full time work. I should be working part-time to avoid this pushing through the pain and exceeding my limits every day. I had to do some financial changes. But now I work part-time. In a less stressful job position. Day on, day off for recovery, day on, day off for recovery. Three day work week.

While my finances suffer... which is why I had to prepare and adapt that to make it work. I have to say my wellbeing after not having to exceed my limits every day is working for me. I succeed at this level. I am happy. The pain is less intense as a consequence at work. And I always have the down time the next day.

This is the most significant change I have made this year. One I fought hard not to do and resisted. I wanted a career. Ambition. Financial stability. To hold my own. Be more. Be proud of my work. I had to confront the idea that 'I am what I do'. I am far more than what I do. And my job is not worth my health. I was stubborn about this for a long time. Trying to hold onto something I wasn't capable of doing. In that old denial stage again.

What is that one thing you think you could change that would have a positive impact on your FM and pain?
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