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Showing posts from June, 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.
Hope 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 …

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.' A…

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. …

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. I…

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 …

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 a…

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 ch…

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 migr…

Day 22: #MHAM #MHAMBC #Frienship

Today's MHAM Blogging Challenge is: "The Power of Friendship"From the image below, please tell us how the power of friendship helps you maintain hope. Friendship is something I value that helps prevent my inclination to just hide when in pain, thus being a hermit and encouraging a sense of isolation. In general, as an introvert I do really value my alone time to be honest. And crowds to tire me out quite fast, pain or not, but more so with pain. However, with chronic pain it has been my habit in the past to simply not desire to socialize because while working my pain was substantially higher... and slowly I socialized less and less, until not at all. What friends I had dissipated. Isolation, introvert or not, simply makes it easy to feel depressed and alone. So I know it is not healthy to do so, although at times it does not feel easy to socialize either. When it feels like you make a plan, and then have to cancel... so that what is even the point of making plans? Your br…

Day 21 #MHAM #MHAMBC #Brave or Used to it?

"Brave:" Watch the video below of Sara Barielles' "Brave" and listen to the lyrics. Then tell us how standing up for ourselves gives us hope.

Nothing's gonna hurt you the way that words do
When they settle 'neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if you

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave
With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I hesitate to even use the word brave when it comes to chronic illness to be honest. Is it brave to deal with something when you have no choice but to deal with it? Or do you just learn to deal with it because you simply have no other choice but to?

And you know most of the time I do not feel brave. I feel tired. And I push through the pain to do what I feel is necessary in this world or what society…

Day 18 #MHAM #MHAMBC Doc and Hope? Or Hopeless

Hope from Our Doctors: Share what your doctor has said to you that give you hope.

Here is the thing about doctors... they are the dark mountain of disappointments in this image I have shared. A very long time ago when I was younger than I am now and I didn't know a lot about my illnesses. I trust doctors to help me and I believed them when they said they could. And now I don't believe there is a high chance of success medications will help me, and then there are side effects, and even if it does slightly help it might not even last that long before it stops working. And it Never works as well as they claim that it will. And they never have as much knowledge about my illness as I do. When they 'run out of ideas' it is like a joke because I have many more ideas they have not tried.

So it is difficult to carve a tunnel of hope through that massive mountain of disappointments. Over and over again medications do not work. Treatments do not work. Then finally they are all li…