Skip to main content

My #InvisibleFight #iiwk15

 My invisible fight is migraines. I have more than one chronic illness, but for the sake of simplicity I will focus on one.

The fight begins when people say 'It is just a headache' because they do not know how intense a migraine is. They diminish it by called it that.

The fight continues when people claim 'It is impossible to have so many migraines. You just can't get them every day like that.' Well it is possible. Chronic migraines are more than 15 a month, and yes, even up to daily.

 Then there is the 'you smiled and laughed so you must not be in pain'. But happiness does not mean I am not in fact in pain. To someone with temporary pain maybe they would not smile and laugh with the level of pain I endure. But over time, pain is a constant ordeal... we still feel things. Our mood still fluctuates. We may have more stress. Be more likely to have depression and/or anxiety. But we can smile and be in pain. We have facades, to hide the pain from the normals out there.

How about 'You worked one day, so how can you not work today'. A) because I can't miss worked for every migraines. Therefore there will be times where I will have to suffer immense pain and work and B) not all pain is 9 or 10. Sometimes it is 8 (horrible and I Will make errors and be slow, but will be there) and 7 (this pain is constantly a distraction but I feel somewhat functional.) Get it?

My invisible fight includes Migraine Associated Vertigo (Vestibular Migraines) . I think I must look drunk and is the most visible of my symptoms to be honest. On top of that I also have Persistent Migraine Auras which obscure and contort my vision. This is utterly invisible, difficult to explain but can really compromise my vision.

People cannot tell I am having a migraine. Plain and simple. I hide it very well. Aside from 9 or 10ers which is obvious since I lay inert doing nada wishing the pain would end. Also I don't speak. Don't laugh or smile. And the room is dark with no lights on. However if I am out in the world the migraine is Not that level. Likely if it is that high I triptan that migraine anyway to at least lower the level. People claim they can tell I am having a migraine, but they are wrong. The tell they refer to is my eyes... but it is fatigue, which yes they look when I am having a migraine. But I also have insomnia and painsomnia. So sometimes I don't have one yet, since my migraine occur early afternoon usually, not always.

Guaranteed they doubt I have migraines at all. If they ever had one they would never imagine working with one. Fact is we have to. We have no choice. Chronic pain changes all things about pain. Pain you normally would never work during, tolerate for long, do anything with... if it goes chronic, you have to just deal, and do all those things and more because, well, welcome to your new life.

Another thing about this invisible fight. It is not just the pain. It is the nausea, vomiting, brain fog, concentration issues, aura (sensory and visual), photophobia, phonophobia, sensitive sense of smell, depression, fatigue, digestive problems like diarrhea, frequent urination, sensitive painful skin (scalp pain.), facial pain, dizziness, vertigo.

I have lost days, months and years to this pain. Time I will never get back. One has to wonder how many more days will I lose to this disease? The disease that takes, and takes, and takes.

Post a Comment

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.

__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

When I say I am good

When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons. 

I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM…