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Showing posts from June, 2014

#MHAM #MHAMBC #Migraine Monster

Day 26 of migraine awareness month: Describe your Headache or Migraine monster – what does it look like in your imagination or your dreams? 

Migraine Monster
Insidious creeping beast, Hovering in the edges of my mind It's going to make me its feast; Digging in, groans and mined
Blinding, sharp creature finding all the hard edges of my brain It is the breaker; Feeding on the splinters of my pain. My monster. My Bane
Twitter: nikki_Albert

Day #1 post “What would you do if your dream of a totally pain- and symptom-free life, came true?”
Day #2 post "Bed of Clouds poem to ponder"
Day #3 post "Recurrent dreams"
Day #4 post  "Still I Rise"
Day #5 post "Monsters"
Day #6 post "Ways to raise awareness."
Day #7 post "What I do for Awareness"
Day #8 post "Do not forget to live"
Day #9 post "What f…

The battle of the pain clinics

I went to a pain clinic referred to by my neuro. They have suggested that I exercise doing as I have been doing; yoga and walking. Increasing the amount I can do within my limits as to not cause a flare. They also put me on slow release tomadol to help with all pain from all pain conditions. I asked if it would cause a migraine rebound issue but was told that since I had no issue with that medication or with tramacet which is my current rescue, then taking it daily would not be a problem. They wanted me to try it for a month to see for sure. It is in fact helping a great deal at the dosage I am on, minimum, and I don't think I need more than that. It also is not giving me rebound headaches, as I know what that feels like since T3s definitely do.

The second pain clinic I was refereed to by my doctor. It took a year to get into that damn place. They want me to do a lot of exercise. Aerobic more so than walking and yoga. He said he recommends yoga to his elderly patients. Yeah. He wa…

#MHAM #MHAM #migraine Day 25 Why change is so damn hard

Day 25 migraine awareness month “Why Change is So Hard” video: This short video (embed video) goes to bat for the “lazy people” who resist the change they dream of, and why they might not actually be lazy at all! What do you think about the intriguing research discussed here, and what do you think you would do if you’d participated in the study? Do you think this explains how you act when you’re in the middle of a headache or migraine attack?

This is intriguing.  The speaker basically states that constantly monitoring our behavior, as in when we want to adjust or change a habit or behavior involves a lot of self control and is mentally exhausting.  We all know this to be true. It takes a long time to establish a knew habit such that it becomes a new ingrained habit we do without thinking. And it is easy to slip up our fallback on old habits when we try to make changes.

And the damnable thing is that with chronic illness we are Constantly trying to make changes to our lifestyle and hea…

#MHAM #MHAMBC #MIgraine Day24 Hold On

Day 24 of migraine awareness month “Hold On” video Wilson Phillips:
Watch the Wilson Phillips video below, then write on: When it seems Migraine has dragged us down into the pits of despair, changing our lives until we barely recognize ourselves, what do you do to hold on and keep fighting for your dream of better health?

This song can be easily related to the battle of chronic pain. To the struggle to hold on. And also to the struggle to adapt and change.We are in pain and that is a fact. But we have to hold on. For another day. Another week. Another year. We have no idea when things will improve for the better or how they will improve for the better, so we just have to hold on and fight until then. A damn long and hard battle it is too.

We can get lost in the pain. In the survival mode of just getting through the pain day by day. Depression can be an added burden as well. And honestly I have no idea what I do during those times to hold on when it just seems insane to do so. Ju…

#MHAM #MHAMBC #migraine Day 23 In it together

Day 23 of migraine awareness month: “A dream you dream alone is only a dream. A dream you dream together is reality” John Lennon - Now write about this in terms of your dreams.

This makes me think of the Migraine Misfits group I have been an admin with. We have a great group of people that have got together and started a closed support group on Facebook, as well as a public page to help share migraine awareness information with others. It was a dream by the founder Gueneviere Wolven and the collective of us made it a reality.

I can also think of this in terms of this blog. I started it out and you are just writing to get things out of your system. Then you connect with others. You get more into raising awareness and keeping up to date on research. People as a collective can share information and get things done for awareness that individually is a lot harder to imagine.

I think we can say that with all migraine awareness groups. With all associations. Charities. If we get together …

#MHAN #MHAMBC day 22 Support system

Day 22 of migraine awareness month: “Every Breath You Take” video Ally McBeal surprise. Robert Downey Jr and Sting duet.Write to us about someone in your life who watches over you and how they help you live with Headaches and / or Migraines.

My common law spouse of 17 years watches over me. He has been with me since I was diagnosed with fibromyalgia and migraines and with chronic migraines. When I was working he used to cook every supper because I would be in too much pain or too tired to cook. Now that I am on leave from work I generally cook, gives me something to do. Although he still does all the grocery shopping since that task is very draining for me.

He is literally always watching over me. He fills my weekly pill sorter, so I don't forget, reminds me to take my pills, in case I have forgotten. When we are out if I look like I am in pain he will ask if I am all right, and if I am not he is pretty insistent we leave. He does not want me to go back to work because he knows ho…

#MHAM #MHAMBC Day 21 Our bodylanguage and who we are

Day 21 of migraine awareness month “Your Body Language Shapes Who You Are” video

 In the video she discusses nonverbal postures. How when we feel powerful we make ourselves big and have open postures. And how when we feel powerless we make ourselves small and have closed in postures. I must feel pretty powerless because I am always pretty slouched in with my arms close to my body or rubbing my neck, with my legs often twisted up in a pretzel because I find nice awkward positions comfortable. Even standing my legs are often crossed. I have hypermobility syndrome... and being very double jointed I feel less pain in odd positions. And I agree that my posture screams passive and powerless. I am a real mellow person and do not have an aggressive bone in my body. I do often lack self-confidence.

She brings up the concept of Fake it to you make it. Until you become it. That is mimic powerful body language, since mimicking it affects the brain. Mimic it until you become it. It seems absurd to…

#MHAM #MHAMBC Day 20 daydreaming

Day 20 of migraine awareness month In one of his poems, Edgar Allen Poe wrote, “Those who dream by day are cognizant of many things which escape those who dream only by night.” Are your dreams different in the day and the night? What does this poem say to you that might be helpful to patients?

 The quote suggests that dreamers who dream while awake have more advantages than those who just dream while asleep. Daydreaming is an act of the imagination and invoking our curiosity. An insomniac though would question how he phrased that given we are indeed awake at night. Just saying. Lot of night time hours spent awake here. However I am a dreamer. A daydreamer. I enjoy the act of it. The imagination exercise. Which enables a person to stretch their imagination in any direction and to even work things out before they happen.

And I use my imagination in my hobby of writing fantasy fiction novels. To me characters, stories and worlds exist in my mind. I use it as a form of pain distraction …

Daniel Gilbert TED talk

Human beings are works in progress that mistakenly think they’re finished. The person you are right now is as transient, as fleeting and as temporary as all the people you’re ever been. The one constant in our lives is change. Daniel Gilbert "The things we do when we expect our lives to continue are naturally and properly different than the things we might do if we expected them to end abruptly. We go easy on the lard and tobacco, smile dutifully at yet another of our supervisor’s witless jokes, read books like this one when we could be wearing paper hats and eating pistachio macaroons in the bathtub, and we do each of these things in the charitable service of the people we will soon become. We treat our future selves as though they were our children, spending most of the hours of most of our days constructing tomorrows that we hope will make them happy. Rather than indulging in whatever strikes our momentary fancy, we take responsibility for the welfare of our future selves, sq…

#MHAM #MHAMBC Day 19 the poem IF

Day 19 of migraine awareness month:  “If” by Rudyard Kipling

A good poem about balancing your virtues. A few stanzas speak to me. 
If you can keep your head when all about you        Are losing theirs and blaming it on you,    If you can trust yourself when all men doubt you,     But make allowance for their doubting too;    If you can wait and not be tired by waiting,     Or being lied about, don’t deal in lies, Or being hated, don’t give way to hating,     And yet don’t look too good, nor talk too wise:   There would be a great balance in this coping game if I could keep my head when all those around me are losing theirs and blaming it on me, because I have found that can be what happens with stigma in the workplace. You get blamed for things you cannot control, that are not your fault and that do not have the effects they claim they have. People can understand your illness and disability but others can blame you for it, and claim No one understands it. Claim it is your fault even. Unt…

#MHAM #MHAMBC Day18 I dreamed a dream

Day 18: I Dreamed A Dream” Susan Boyle with commentary video

I love this song. It is powerful and a powerful part in the movie as well. 

I dreamed a dream in time gone by
When hope was high
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving
Then I was young and unafraid
And dreams were made and used and wasted
There was no ransom to be paid
No song unsung
No wine untasted
... I had a dream my life would be So different from this hell I'm living
So different now, from what it seemed
Now life has killed the dream I dreamed
Sometimes it can seems like the life we used to have is a figment of our imaginations or a dream. We cannot imagine a time without pain. Reminds me of this Emily Dickinson poem:

Pain has an element of blank;
It cannot recollect
When it began, or if there was
A time when it was not.
It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.
We lose the capacity to recall a…

#MHAM #MHAMBC day 17 Imagine that

Day 17: Invent the perfect imaginary treatment for your diagnosis. What would it look like? What would it do? How would it work? 

I was just thinking about what a friend is doing for her child who allergic to their cat. She is getting him allergy shots. You need to get them for a certain time but they may help with a cat allergy.

Imagine if there was a form of allergy shot for migraines. They could give you a shot, with a small amount of migraine, for a certain duration, that then made you less and less sensitive to migraines to the point of just not getting them any more.

Yep. That would be cool.

Twitter: nikki_Albert

Day #1 post “What would you do if your dream of a totally pain- and symptom-free life, came true?”
Day #2 post "Bed of Clouds poem to ponder"
Day #3 post "Recurrent dreams"
Day #4 post  "Still I Rise"
Day …