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Showing posts from September, 2010

My shrink is a meaner

I went for my first shrink appointment and it was interesting and annoying.  She said I loved others more than myself, which is true, because my body is broken and annoys me.  We discussed how my reasoning is emotional, negative and irrational when I am in extreme pain... duh.

So these are the steps I need to take....

1) exercise- always a fav with the docs.  Not possible when I am working, but sure I will do it when I am not working.  Not sure how that will work when I return to work though.  I am going to start with walking and work up to yoga and water aerobics.

2) Quit smoking-  really?  That is bad for me?  Huh.  That's sure news to me.  Besides I am on top of that one, and not because of the migraines, since I know it makes no difference with those, but for the asthma, which obviously would be way better.

3) Quit the diet coke- and not for the aspartame which many people believe is evil, but for the caffeine, which can affect migraines, but the last time I did this experimen…

The visual Aura can be so trippy

I swear year by year my visual migraine aura gets worse and worse.  I hate light of all sorts and maybe that is because I get the light senetivity from FMS as well as migraines, either way light is painful and a migraine trigger.  The lighter it is the more intense my usual prolonged aura of visual snow is... all those billions of sparkles creating a wierd warping current in the air.  Then before a migraine the visual snow gets brighter and the specks larger, as well, I get a sort of murky ink that flows through my visual field.  Sometimes I also get the warping, flashing negative aura.  Recently I noticed in the morning when I first exit my completely dark bedroom and go into the hateful light that I suddenly get an intense flashing aura that completely obscures my vision for five to twenty minutes.  Very Intense.

Loving this new research

Migraine-gene-discovery-could-lead-to-new-pain-killers - looks like they may be able to potentially find medications to increase our pain threshold.  Gotta love that!

It is believed that it controls the sensitivity of pain nerves in the brain and if faulty can bring the threshold so low that just living is painful.

This is why migraine sufferers are so sensitive to light, sounds and even touch.

But the gene is also susceptible to being switched on and off with drugs which means that it could be altered to increase the threshold to such an extent it eliminates the feeling of pain altogether.

The potential loss

I think what bothers me the most about my disease is the loss of my potential. When I was younger I was all potential. Then I went to university to grow my potential. I did not have great ambitions, but I did have fine goals to realize my potential. My disease has literally taken away all my potential. There is no Becoming. There is simply Existing. I am useless. I serve no function. I will not become more than I am. It is stagnant.

That is an extremely difficult thing to accept. Right now, now that I have survived myself, I am struggling to find a place. Struggling to decide whether it is reasonable to contining working and what I will replace that lack with. This is a vital struggle to win because we all need to feel like we are accomplishing something by our existence.

Sometime you just have to get out of the house...

I took my man out for neon bowling. Neon bowling is in the dark, so I rather like that. And I like bowling. What I don't like is the whack load of pain I am in the next day. Crippling pain. Hard to walk pain. FMS pain. It will last a good week, that is what I know from previous experiences. It was worth it though. To get out and do something. To spend time with my man. Sometimes you should get out and do something fun even though you know the price you will pay for it.

When I woke up today, aside from the nasty muscle pain throughout my body I was also blinded by an overpowering migraine aura. It was black, swirling, flickering throughout my vision. I kept rubbing my face thinking something was there, because my forehead tingled. I could barely see at all, so I ended up trying to go back to sleep. Later when i got out of bed the aura was still very intense, making everything distorted. But the migraine itself was not that bad, maybe moderate pain wise. Crazy how j…

Signs the pain is getting the best of you...

- You have decided to hybernate for the winter.

- When all your social interactions come via Facebook.

- When people say they sometimes get pain like that when it rains and you want to choke them.

- When you spend all night tossing and turning, trying to find that exact position that does not cause pain and fail.

- When leaving the house to run an errand is an event worth celebration.

- When you fall down you decide to just lay there for a bit contemplating your existence.

It is nice to have a break...

Being as I am on new sleeping pills as well as a painkiller that last 12 hours, there have been days when I feel migraine free mostly, but also sleepy and sluggish. It had been great even though it is temporary. And it seems every time I go outside or into floresant lights it amp up a migraine in no time flat. So obviously being all drugged up is working for me.

Not so much today mind you, as a nasty migraine sprung on me in the evening, but since they are not daily with these meds and I am at home and don't have to work tomorrow well it can be handled.

Invisible Disability Awareness

We are embodied beings. All of us. But what then is distinct about the lived experience of pain? What is it like to have your life and choices filtered by pain, limited by pain and yet be invisible to others? I will tell you what it is like. It sucks.

Yes, it sucks. There I said it. Like so many others with invisible disabilities I have danced, no, shuffled though life with this awesome mask of well being on. This carefully constructed fa├žade I wear so that I do not exhibit any of the pain behaviours that would make others know I am in fact in pain. There are so very many reasons why we create these masks. First of all, to look like I am suffering all the time, while accurate, makes other people uncomfortable and eventually doubtful. It makes me feel like I am a chronic complainer or whiner. It does not help and in fact hinders my ability to function without it. It helps me repress that core emotional anguish we carry in us that we have to endure such things.

Masks crack sometimes an…

30 things about my illness you might not know meme

For invisible disability awareness please post on your own blog!

1. The illness I live with is: Fibromyalgia and chronic migraines
2. I was diagnosed with it in the year: FMS 1997, migraines 1998
3. But I had symptoms since: I was 8
4. The biggest adjustment I’ve had to make is: changing careers and struggling to hold down full time emloyment
5. Most people assume: If I can work with a migraine sometimes, then I must be fine to work all the time.
6. The hardest part about mornings are: waking up with a full blown migraine and intense grogginess and confusion.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: nothing
9. The hardest part about nights are: horrible insomnia
10. Each day I take 5 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried chiro, massage therapy, pphysio, herbs, vitamins and likely more that I don't remember
12. If I had to choose between an invisible illness or visible I would choose: …

Sigh... rant is now over

Back to the real world and real world concerns.  It is frustrating to have a chronic illness that is so limiting.  It forces me to look at everything I do and conform it to my physical well-being.  Which is, frankly, annoying.

A) Me:  what can I do to make me feel better?  Well, lots of little things.  We all try the little things, sometimes repeatedly.  For me massage therapy and a chiro are not a choice due to that finicky FMS that does not play well with the troublesome migraines.  Contrary.  What I do do is eat small meals all day, starting with a yogurt in the morning (yogurt is like a super digestive food that helps me lose weight for some reason) and I take a vitamin supplement of calcium, magnesium and vit D.  But then there are two bad habits that compromise my health that I need to boot: my diet coke addiction and my smoking.  I have decreased my diet coke intake with water and tea, but want to focus on the smoking first.  Do I think anything I do will cure me?  Hell no.  It…

What can we learn....

Rate a suicides with migraines

Past research has shown that rates of depression and anxiety more than double among people who suffer chronic migraines. Even more striking are the suicide rates: almost one in four women and one in seven men who experience migraine with aura, a visual or neurological disturbance which precedes headaches in 15 percent of sufferers, attempt to take their own lives. findcounseling.com 1 in 4 women with migraine with aura?  Well, now those are not good odds are they?  So much for that concern over stroke risk... we should be more concerned about that fact we are killing ourselves off.  So what does this tell us about chronic migraines?  That they suck?  For sure.  That we are still suffering?  Yeppers.

What is it we do when we cope?  What is the inevitable process involved with handling chronic pain?  Well we adapt to survive.  The function of pain is to alert us to a problem so we can fix it, since with chronic pain we cannot fix it, we try to limit it.

1) …

Got my head shrunk today

Yep, I talked to a shrink over the phone, as a preliminary interview. It rather surprised me, since in my experience shrinks tend to blame everything on depression rather than considering the underlying physical disease and the cost of chronic pain. Why would that be helpful? It wouldn't. But I was willing to go through the motions. You do the act and you havta pay the consequences. However, this dude talked more about my migraines, how I cope and how it affects my work situation. He himself gets nasty migraines and he discussed some ways he copes and some methods people use. Naturally this is a familiar topic, since I have developed several ways to cope. He talked about my work situation, which is not ideal and how to change it. He basically said if they were not willing to compromise, which they are not, then it would be beneficial to apply for long term leave and then possibly AISH assistance after. Since if it is impossible for me to work there 9-5 then it would be …