Monday, June 29, 2015

Day 29 #MHAM #MHAMBC What is Hope?

What IS Hope?: We left his one for late in the month so everyone would have been thinking about hope. This one may be one of the more challenging prompts for you, or it may be one of the easiest. Please define hope. Tell us what it is to you, and what it isn't.

  1. Hope
  2. Hope is an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one's life or the world at large. Wikipedia

The human mind is special in the sense it has the capacity to project into the future potential outcomes and have expectations, desires, dreams and goals about that future. If in the present moment we are suffering we can a) believe in the future it is possible that suffering will diminish b) that the suffering will be worse in the future or c) that it will remain the same. If we were to say the past dictates the future, someone with chronic pain would look at their history of pain and logically believe the pain would either get worse or stay the same in the future. Hell, even research suggest the brain gets fixed in its experience of chronic pain, which is hard for it to 'unlearn'. Hope resides only in our capacity to believe that it is Possible we will have some relief from suffering in the future, in some way. Not necessarily the belief of a cure from the pain, which might at this current stage of the game be unrealistic, but for less frequency of attacks, less intensity or just less general suffering so we can better cope with the attacks that we have. History may not give us any reason to believe this will actually happen. Quite the contrary in fact. Which is why hope comes from an optimistic place, or at the very least, a place of possibility. Rather than the lack of possibility.

Hope is not all about the future however, it inspires us in our present lives to make goals for us to achieve the ends we hope to gain. If we want less suffering in order to manage our pain better we may try new coping strategies like biofeedback or meditation, or just relaxation breathing, or rest with ice and migraine balms... additional things we can do that help to manage the pain that Exists already, but hopefully makes it easier to deal with. If we want to diminish the frequency or intensity we will try new medications or botox... and have a hopeful outlook that those new medications have the potential to work. In fact, some studies suggest a positive outlook may help with medications working. That is the power of believing a medication has the potential to work, helps them actually work. Whereas going in with the belief that it will make no difference at all can hinder your results. So hope can actually have an importance on our outlook, if that study is to believed, and why not given how powerfully potent the placebo effect is... the brain does in fact have effects from pure belief that are quite startling. Then there is just the simple motivation we have to enact these goals that hope inspires in us. Like exercise routines that are very hard to maintain with chronic pain, but may have a benefit on us in a few ways, these sorts of goals we can create and enact from having the hope of improvement. Sometimes just hope itself heaves us through the darkest times in our chronic pain chaotic lives. When we despair for ever getting through the pain... but that sliver of hope pulls us through. We just refuse to give up. Until we have more fight in us.

Whereas being Hopeless, there is no sense of future. There is no possibilities. Possibilities are consumed by the pain. Because it is hopeless. The pain will never end. Treatment will never work. Nothing I do will ever make a difference. Hopeless is very final. It does not allow for Possible. For change. For the motivation for change. At the same time it consumes the present, because the present is likewise consumed by pain. An existence, not a life. Why do anything if nothing is going to make any impact? It is also a dangerous place to be in for any length of time because why exist at all if there is no hope at all suffering will be diminished even slightly in the future? Seems like torture. And when you go down that negative thought spiral it leads to depression and suicidal ideation. That is what happened to me when I felt utterly hopeless for too long. Feeling hopeless for a day was never too bad... sleep off the pain and feel better in the morning. But months and months, is risky. Pain needs to be managed or we do lose hope. And hope, even just a thread, is necessary for us to cope and necessary for our existence. We need to believe in the possible. We need to want to try. 

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association."

Prompts to be found on: Awareness Month page.

Awareness Month page.

Day 28 #MHAM #MHAMBC threads of hope

"Hope Begins In the Dark," Interpret the Quote: Tell us what the quote on the image below means to you.

Chronic illness is a roller-coaster ride. And when you are in the slump you have to find a way to crawl back up. Hope is the way we do that. Hope in anything. It does not have to be large hopes. It can be the little things that just get us out of bed that day. Then the next day. Keep us going. Keep us fighting. Until we get to a point that we want to fight again. When we reach that point we have more motivation to try again and push forward and more hope that things will progress and improve.

When in the dark though it is difficult to see the light. We need anything that can get us through those times. Sometimes false hopes will do it. I lie to myself all the time. I call them 'useful fictions' to put me in the right mental space to get through the day. Like 'If I just get up and get to work that is all I need to do, once I am there I just need to survive.' And once I am at work 'Just 8 hours to go before I can rest. I can do that.'. Then I think when I get home 'Just a few more days and I'll have a day off to rest up.' And I just keep doing that to get through. Tricking myself into believing I can do it. Just get up. Just get moving. Just get there. Just get through it. 

Other times I just need to think of reasons to keep going. I think of them in my head all the good reasons to keep going and avoid thinking all those negative thoughts that persist in telling me how pointless it all is. Because hope just needs simple reasons why I should want to continue. The simple joys. All the little good things. And all the awesome things. All the things I am thankful for. Things worth fighting for. 

In the darkest times though, is when we find the fragilest of hopes to cling to. We hold onto it with all that we have and all it is worth. Like it is a life line, because it is a life line. Sometimes that is all we need to get us through the dark. Even though, as I well know, the dark can last a long time. Sometimes we just have to know that it will end, or I should say, that the intense suffering of that immense darkness will diminish back to somewhat tolerable levels again... so that we can have a bit of a life back, hope for me, fight for me, persevere and endure.

Just a thin thread of hope as helped me survive in the past. Just the belief that 'this too shall pass'... not the pain itself as a whole, but the intense pain, the intense suffering, the intense despair. I have had that thin thread of hope snap on me before and it is like drowning without a life line... like all the air is gone and you are suffocating. No one notices you can't breath. No one notices you just want to lay down and never wake up. A sort of numberless sinks into your spirit because there is no reason to even continue. The best thing I have done in that situation is pretend. Pretend I wanted to exist. Fabricate reasons to exist until I Believed them. Created hope until I Felt it. Because we need even just a thread to lead us to the light. Right out that slump. Eventually we do, even if at the time, we don't feel like we will.

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association."

Prompts to be found on: Awareness Month page.

Awareness Month page.

Sunday, June 28, 2015

Day 27 #MHAM #MHMABC Don't give up.

"You Are Loved (Don't Give Up)" Watch the Josh Grogan video below and listen to the lyrics. How does it make you feel? Which lyrics do you find especially inspiring?

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved

Don't give up
It's just the hurt that you hide
When you're lost inside
I...I will be there to find you

Don't give up
Because you want to burn bright
If darkness blinds you
I...I will shine to guide you

This reminds me a lot of my spouse. When I am in pain, he comforts me. When I am lost, he finds me. When I am depressed, he is there for me. When I feel useless, he reminds me of what I can do. He supports me in my disability and motivates me in the things I desire to do. He cares about my health and well-being and strives to help me be the best and healthiest I can be mentally, emotionally and physically. He knows when I need some alone time and knows when I need some socialization time. Knows when i should take it easy and when i can do a little more. 

He was there when I did give up. And I had to explain to him why. It was extremely difficult to explain to someone why the pain was so bad you just decided... no more of this living thing. So he is very attentive to me in regards to issues he things are concerning for my health. Things he might not have worried about in the past, he pays attention to now. Because he does not want me to give up on life, on him, on anything. 

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association."

Prompts to be found on: Awareness Month page.

Awareness Month page.

Saturday, June 27, 2015

Day 26: #MHAM #MHAMBC Hope and hopeless: and begin again

Choose your own hope topic: Please choose your own topic related to living with hope and write about it.

Living with hope is both feeling like you have a life to live and that there is something worthwhile in the future to live for. When we are hopeless many things fail us to put us in that state. We often say we are existing and not living. Treatment is failing us utterly in the present And we do not foresee any reason to believe that will change. 

Partially this can be blamed on medical professionals. Doctors do not have the experience to handle chronic pain patients. They are not well educated in it, so when it comes to treating it they are extremely limited in imagination. Therefore we need specialists; migraine specialists, neurologists or pain clinics. However, in complicated cases even they can simply 'run out of ideas' and nothing can destroy your hope more than being told they have nothing more they can do and basically they are going to pass the buck to someone else. In Canada this often means an additional Long wait list when you were already on a Long wait list. 

Partially it can be blamed on what is happening in our lives at the time. Some of us have to work with chronic pain. When we have no pain management that means high levels of pain, which means severe sleeping issues, which means more pain, more stress... and missing work. When we miss work employers get cranky, take that out on us and we get more stressed. it can lead to very stressful situations of ultimatums, threats of being fired, demotion or laid off. This can make us fee like we are trapped in a situation where a) we have to work but b) cannot handle the pain in order to work and c) medical professions are not able to resolve the issue so we Can in fact work. A lot of life factors can factor into this however, a lot of stresses can make us worse than usual. And when we are out of control on pain wise, more stressed, less sleep... we have a hard time holding onto hope. It feels like we have no control over the situation.

And, finally, partially it can be blamed on comorbid depression or prodrome depression. Because when you are in a status migraine that has lasted five days... around day three you are in agony. Perhaps you even tried the ER and they would not help you or just offered you toradol even though you explained this is a Status migraine. And the depression associated with migraines crashes into the brain plummeting you into the depths of despair. Where hope does not exist. 

So there will be times in our lives with this disease of chronic migraines where we will feel hopeless. The best we can do then is go day by day. Get though it day by day. Then make a plan on what would help with your treatment. For example I a)got rid of my GP as he was so disinterested in my pain and got a new family doctor who is excellent b) went to psychologist to help with mood and coping strategies for chronic pain c) went on long term leave from work. Now my leave is over and I have to decide whether I should reduce hours and go to part time, if possible in order to maintain a balance. In order to maintain my hope.

Try to affect the areas that are causing the most problems in your life. When you get better medical care and pain management it makes a vast difference. When you change how you work whether that be flexible hours, working from home, decreased hours... anything that will help you continue but be a benefit to you so you can work without the struggle.

Once you have that down you will see some improvements. From there it is taking control over the things you do have control over. What can you do, in addition to taking your medication, that would benefit you in your treatment. Slowly add those in; whether they are medication, biofeedback, massage therapy, acupuncture or others. This gives us a sense of control back and a sense that something we our doing may help us in the future. 

Gaining hope back once it is lost can be difficult. But I find you just have to find those factors that are around your hopelessness and try to change the ones that you can. 

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association."

Prompts to be found on: Awareness Month page.

Awareness Month page.

Thursday, June 25, 2015

Day 25 #MHAM #MHAMBC My hope lies in management

"YOUR Hope," What do you hope for most in your journey with Headaches or Migraines? Please share with us about what you hope for and why.

At this point in the game I have what I like to call realistic goals. I would really like to have some decrease in intensity and frequency of migraines through medication, even if it is just a little... a little goes a long way. I would love pain free days, that would be a significant improvement but also just a decrease in actual intensity would be very welcome.

If that is not possible, or not possible yet or in the near future, then I want to decrease the suffering caused by the existing migraine pain that I have. There are a lot of factors that increase suffering. Mood, negative thought patterns, isolation. And to a degree the part of chronic migraines we have an element of control over is lifestyle management and coping... to manage the suffering created from the migraines we cannot treat, which is essential when it comes to living with this disease. For me there are several components I consider when trying to affect this area of my life. 

  • I do regular mindful meditation to reduce stress.
  • I do cognitive therapy exercises to help with negative thinking patterns... just to keep an eye on how I am thinking about pain and reacting to it. As this really affects my moods.
  • I do as much exercise as I can tolerate, which admittedly since I returned to work, is little. So I want to work on this area some more.
  • I try to do a little bit of socializing at least once a month. This helps prevent isolation, helps with mood and gets you out of your head space for a bit to enjoy yourself.
  • I try to engage in hobbies that I enjoy to relax whether that is reading or writing.

I have in the past felt completely hopeless and out of control with the pain of the migraines. It felt like there was no solution. No way to improve. Nothing a doctor could do and nothing I could do. And that I would just have to exist in this pain space forever, while constantly Doing things that made it worse. And I fight not to Be in the head space again all the time. I know how I thought about pain and my situation then and I don't want to go down that path again. Being hopeful in the basic sense implies to me that I have some modest control over my destiny. That it is not all dependent on doctors and treatment that often fail. That my coping and coping strategies make a difference in how I live with this disease. 

I would like to believe the migraines would just up and stop one day and who knows, they might. But until that day I want to manage this disease the best I am capable of. And that means pain management, with medication that hopefully has some sort of affect on intensity and frequency and also with coping strategies that help with the suffering caused by the pain. When the pain is completely out of control... I lose hope and I despair and i wonder why I even bother with this existence. So pain management is vital in all its aspects.

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association."

Prompts to be found on: Awareness Month page.

Awareness Month page.

Wednesday, June 24, 2015

Pain clinic appointment

I went to the pain clinic today hoping they would address some issues for me. However, they could not address the vertigo issue I am having with the migraines. They said I need to go back to neuro for that. And that can take up to a year to get into. I will try calling them directly to see if I can get in sooner, otherwise I have to go through a referral and on a waiting list.

He said he is not comfortable with me driving with the vertigo. So that now makes two medical professions who have said that. And nothing I can do about it since I need a way to get to work. He said to not drive with it, so that would be every day... so that does not help at all. I will have to wait for the neuro to adjust my medication.

He increased my pain medication to help with the pain at night, which is good, maybe I will get some sleep now.

And he said in regards to work I should consider asking my employer to go part time. As I do not want to push myself and push myself and burn out and end up on leave again. And he is right. I am just pushing though the pain trying to make it work. Knowing it won't because it is stressful, increases the pain and increases the lack of sleep from the increase in pain. You end up in a viscous cycle of high pain, no sleep, higher pain, less sleep.

It should be noted I agree with him on that but I had asked this company to accommodate me in that way before. They said no. They said my job was face-to-face full-time with the specified hours and that they didn't consider my disability to be a disability. Made me want them to watch their own disability awareness film to be honest because it talks about not all disabilities are visible. Ha. Point is I tried all that when I was in a real bad place, and they gave me the big F U. So I don't know if this company, despite what they Say, really does well with disabled people or if it was just that branch that didn't. Hard to say. They had said they talked to the area manager and HR, which makes it sound like everyone denied me. Like it was really the whole company decision on their part. So while I agree with the pain doctor, who hadn't wanted me to return to full time work in the first place, that part time work might be all I am truly capable of now... I question whether the company I work for would give a damn about it.

Day 24: #MHAM #MHAMBC Miles and miles before I rest

"Fighter" Have your Migraines or Headaches made you a fighter?: Watch the Christina Aguilera video below and listen to the song lyrics. How have your Migraines or Headaches made you a fighter?

Makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter 

I think every single person with chronic migraines is a fighter. Every single person with chronic pain is a fighter. We have to be. We have this pain and no treatment will end the pain and get rid of it... maybe just diminish it slightly. So we learn to endure it. We learn to function in the world with it, to some degree. Sure it affects us, it limits us and makes us moderate out activities and we have made compromises for it. But we fight every damn day we get out of bed. 

I sometimes think that is the difference between episodic migraines and chronic migraines. When migraines are episodic... that is low episodic, not high episodic where they are practically chronic (that has the same impact as chronic migraines according to research), is that with episodic migraines we can feel the impact of the migraine. We can hide in our cave and recover and no one judges us for that. It is, after all, a migraine. But as soon as you cross this invisible line into chronic pain at around the high episodic to chronic migraine area where the impact is intense... society said 'nope, you have to function because this pain will always be there and there is nothing to do about it, so suck it up buttercup'. And damned if we don't try to do just that. And falter, because it is a crapton of pain. But we learn and adapt and get some sort of modest treatment and cope and do whatever we can to manage the pain... and somehow figure out to have as much of a life as we can manage. At times, not much of a life. At times, somewhat more. Depends on the pain, the treatment, the year. Sometimes it feels like the pain has literally consumed years of my life that are just a haze of existence. Other times it feels like I get some sort of balance in there. But I still am expected to work. To do my housework. To function to some degree. With the pain. And I am not the only one. Seems to me just to Be in this pain spells fighter to me. But some of us work. Some of us are parents. Some of us are caretakers. We do things and live our lives with this pain. We fight the fight.

I don't thank the pain for that by the way. I don't think 'thanks pain for making me so damn strong'. Because frankly would rather not have learned this rather repetitive lesson. However, it is very true that I would not be the person I am without the illness I have. Coping has molded who I am. And I think no matter how hard we think the pain is to live with we should be proud of our coping skills. We learn a great deal on how to cope with pain from the onset of this disease in order to survive. Without those strategies, we would not make it. We should be proud of that hard earned distance and hard earned skills. We may think it is really difficult, but think how it would be if all this pain Now happened back in the day without any of those hard earned skills? It would be brutal. I for one adapted slowly over time because I had chronic pain conditions since I was kid where the pain just got progressively worse as I got older. At each stage it seemed like the worst pain ever, but at each stage I adapted and coped and endured and learned. And kept going. If I had been hit with all the pain conditions I have now, then, that would have been horrific. In fact there is one thing the pain class i took at the pain clinic taught me... a life of pain teaches you all the same coping skills they want you to pick up in that class. Been there. Done that. Did it All the hard way as well. Never learn it the easy way. Have to learn by poor coping skills of course, but still, I learned. And we all pick up these skills as we go along because we all fight to survive. Fight to hold onto our lives and what we consider to be important. 

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association."

Prompts to be found on: Awareness Month page.

Awareness Month page.

Tuesday, June 23, 2015

Day 23: #MHAM #HMABC Cure?

Hope for a Cure?: Do you have hope that a cure will be found for your Headache disorder? Tell us about your hope.

Not really. Treatment as it stands has helped me little for migraines with aura, less than that for migraine associated vertigo and persistent migraine auras. I believe they are just learning things about how migraines function and therefore are quite a ways from any potential cure in my lifetime. Perhaps I lack optimism in this area given so many failed treatments. You start getting just things like 'exercise, biofeedback and meditation' from doctors at this point in the game... because they have no clue how to help you. Ran out of idea and sort of are just winging it at this point. Not to say those things won't help, in some way, but not enough it seems to make any significant difference.

I have more hope in particular targeted treatments coming down the pipeline. As it stands, currently, we have triptans for actual migraine abortives that were created for migraines and every other preventative medication we take was designed for something else (all off-label). New treatments specific to migraines could be a massive benefit to treatment.  

Meanwhile, as we reported earlier this week, study results on a new class of anti-calcitonin gene-related peptide (CGRP) monoclonal antibodies to fight migraine highlighted the meeting. Big players like Lilly (NYSE:LLY), Teva (NYSE:TEVA) and Amgen (NASDAQ:AMGN) along with high flying start up Alder Biopharmaceuticals (NASDAQ:ALDR) are in various stages of drug development. CGRP modulates transmission of pain and dilation of blood vessels.
“This development is a transformative moment in migraine treatment,” said Peter J. Goadsby, MD, PhD, who is chair of the scientific program of the American Headache Society’s annual Scientific Meeting.  Dr. Goadsby is Chief of the UCSF Headache Center, and one of the world’s leading headache treatment experts and researchers. (Here’s the release from the American Headache Society) National Pain
I have a lot of interest in the CGRP development for migraines in particular and hope we see this in the near future and it is something that works for the majority of us. Certainly the research looks promising to me.

However, I do not often let myself think about potential cures because then it often seems I have this false hope for the future. That if I just push through this pain for just a little bit longer there will be some relief in the future... relief that never comes. I think it is more realistic to deal with what there is, cope with what there is and do as much as I can to improve the situation, if I can, than put any hope in a cure. If it comes my way, then awesome. Sort of like thinking about menopause for women; during which the process is often significantly more painful for migraines but After we Can see some improvement or... not. We can never know which group we will be in until we get through the horrific part of the process. Therefore I cannot hope that menopause will be the break I am looking for, because it may very well not be. We just never know. 

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association."

Prompts to be found on: Awareness Month page.

Awareness Month page.