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bananacandies asked:

PLEASE WE NEED TO TALK I have an ongoing aura in my vision and have had migraines and such since I was 8, my entire family has migraines and aura migraines and I recieved the brunt of that in being "gifted" with auras, flashing lights, white sparkles, zig-zags, pulsing, partial blacking out, full on rainbows and a lot of other symtpoms for as long as I can remember and I've yet to talk about it to anyone with the same condition! I'd love to talk with you!

Sure we can talk anytime! Persistent migrain auras that last beyond the migraine are rare so hard to find people to talk to about it for sure. I also get a lot of varied auras that fluctuate a great deal.

Positivity In Pain: #InvisibleIllness #iiwk14 Invisible Illness Awareness Week: On chronic pain impact

September 8th to 14th is Invisible Illness Awareness Week. Almost 1 in 2 people in America has a chronic illness. Almost 96% of people who have an illness have an illness that is invisible such as chronic pain. For more statistics see Here.

For this invisible illness week awareness I would like to discuss impact. For me that is what I most consider when I think about my invisible illnesses. For example I have asthma and hypothyroidism which are both invisible illnesses but for me they are very well managed. I discuss them for time to time and they do have some impact when you look at the whole health picture but overall I cope with them very well because they are managed. On the other hand, I have chronic pain conditions of fibromyalgia, chronic migraines and peripheral neuropathy and add those together and the impact on my life is significant.

Some of our invisible illnesses can have a significant impact on our lives. And, by the way, no rule that specifies we can just have one health condition. Rather think that is uncalled for though. One should be the rule and then you are good for life. Should be in the rule book.

The impact on our lives can be seen in all facets of our life. Our divorce rate is 75% and we know the extra struggles and issues we have to overcome there. We have a higher risk of depression and suicide. Often you see stats on the cost to a country but the fact is there is a cost to Us. Education is affected as well as careers. Our income levels are affected as a result. I fought very hard to keep a career but in the end I have been on a long term leave for two years because I was not able to function working full time. We have a risk of becoming isolated. I call this the Hermit factor. It happened to me. It is a slow process that happens when we are in too much pain or too fatigued to go out, so we decline invitations, until slowly the invitations stop coming. Friends drift away and you do not have the energy to try and stop this from happening. Until you are a hermit……

There’s a couple of stages of having a chronic disease; there’s the being sick - like suddenly you’re sick and you don’t know what’s wrong. And that can be super terrifying depending on how severe your symptoms are. Then there’s the being diagnosed part which comes along with this word chronic, which inside of it hiding there is the word incurable - which no one says out loud but which is the worst word. It means, not only has your life changed, your life has changed irrevocably.
Hank Green on Living with a Chronic Disease (via doingthediagnosis)

Positivity In Pain: Taking a little time for a #Vacation

I recently went on a road trip and a vacation. The image above was from the lakeside cabin I was staying at. There are fundamentally two things I remember when traveling: be prepared and relax. I have a lot of chronic pain from various conditions so travel will aggravate things. That is a given. This tells me that driving twelve hours straight is not an option. We will instead spend the night somewhere and break the journey in two. In my case, being in a car that long also triggers vertigo from my migraines so in fact I will not be the one driving at all.
 
 
You see we must always over prepare for any journey. With our usual medications, our just in case medications and our other useful tools that may help us out just in case scenarios. Sunglasses, hats and suntan lotion.
 
I travel slowly, as I said, to reduce travel pain. I take many breaks during the trip for walkabouts. Stretch out that pain when I can. I eat very carefully due to IBS. No one wants an IBS flare on the road. No one. So that means very careful choices of foods. It also means a variety of medications on hand, just in case, for that scenario. I have yet to find a medication that prevents the motion triggered vertigo that I get but I do have to have something on hand to treat the resulting nausea. Walking around on land rocking like the sea unsettles the stomach. I always have sunglasses and a hat on hand for the sun to help with photophobia, but there will be migraines so there has to be migraine treatments.

Positivity In Pain: When thinking about #pain

Beth Darnall, PhD, a clinical associate professor at Stanford’s Pain Management Center, said in her study “A key message that I bring forward to the table is that pain isn’t something that just happens to us. Once we acquire chronic pain we are constantly participating with our pain in terms of our thoughts, our beliefs, our emotions, and our choices. If we can focus on that and optimize our control there, then we can set ourselves up to have the best response to all of the treatments that our doctors are going to be trying for us.”
When I read this article it reminds me that pain is not just a signal we physically experience. When I stub my toe I do not go ‘ah, yes, I feel a pain sensation that is quite throbbing in the toe region’ rationally to myself. No, rather, I yelp and curse all the gods and the piece of furniture that dared to get in my way… because, pain is also has an emotional response. Keyed right in the brain is a part of the brain that lights up when we experience pain that has an emotional response to pain. With chronic pain though I think our perception of pain has a great deal more depth. We can get downright philosophical about it. However, we too have an emotional response it just changes and fluctuates day to day, month to month and year to year. This is why coping is a process and not a linear line. Why we can experience frustration, anger, depression and anxiety over and over again.
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