Day 7: Say What? WEGO 30 posts in 30 days HAWMC

 when you call migraine disease 'just a headache' you_
Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?
I have heard a great deal of nonsense when it comes to my health. A great deal. Of nonsense.
-By far the funniest advice was from one of my bosses who suggested I should cut my hair because that would help with the migraines. My hair.

So this is me and my Hair. It is not insanely long but it must weigh at least 100 pounds and clearly the science of it is understandable… I mean it is Gravity after all… all that hair pulling down on the head just has to contribute to the migraines inside the brain, right? That makes sense. So much sense.

-Recently I have been getting a lot of the ‘you look so good‘ because a lost a lot of weight on topamax. Honestly I wasn’t sure if I should be flattered or insulted. And people tell me this like I must be feeling better because I look so good when in fact I was feeling really rotten due to the increase in side effects as I was topping up on it. It really just brought to mind that how invisible this disability is and how people seem to think improvements… like losing weight were something you did intentionally and made you feel better. Gaining weight from side effects didn’t make me feel great and losing weight from side effects isn’t all that good either and no matter what I look like on the outside the pain on the inside remains the same. It made me extremely frustrated with the people that made those comments.

-I had a co-worker once tell me it was ‘impossible to have a migraine for more than one day‘. She got episodic migraines without aura… so clearly she must know all there is to know about migraines, right? Really pissed me off because I have chronic migraines and have to work with them all the time and really don’t like someone telling me what they believe about my disability because they have been mildly inconvenienced by the same affliction. I had to politely but firmly educate her about status migraines- what they were and the dangers involved in them.

-I think one that doesn’t really insult me at all comes about because people don’t understand chronic migraines or understand how many people get the condition. So people I know very well who know how much I suffer with them inevitably will question why I get so many migraines and say ‘can’t anyone tell you why you get so many migraines? There must be a reason why you do when no one else does. Can’t they do anything about it? How come they became so frequent… it doesn’t make any sense!‘ These are people who are truly empathetic to my situation and I explain to them the theories as to why migraines go chronic… in my case likely central sensitization or so I have been told. I explain there are many people with chronic migraines. I explain when they go chronic they are difficult to treat and it is hard to find the right migraine preventatives that help and even the ones that do, well, it isn’t a dramatic Wow you barely have any migraines sort of situation. It is what it is. Chronic means chronic although with the right treatment some people can get down to episodic again if they are lucky but they will always have the risk that treatment will fail and they will go chronic again and they will always have to take all those medications and watch their triggers and so forth to maintain that state. There is a huge stigma with chronic migraines because people do not know about them or get them…. I do get a lot of people blaming me as well… if only I did such and such, or changed this or that… because surely it must be My fault this happened.

-Some rather not funny advice was a doctor telling me to ‘take a hot bath and an Advil’ for a status migraine. I was in agony on day four of a status migraine. Hot baths are more likely to make me pass out than anything. And I can’t take anti-inflamatories. Rather didn’t appreciate her flippant response to my suffering. But this is hardly unusual.
Now when it comes to fibromyalgia I don’t get a lot of that advice because I don’t talk about it often. The stigma with FM is too negative for me to even go there. I don’t often discuss that I have it.
Way back in the day however I had a job as a baker that required a lot of lifting and repetitive hand motions which obviously caused pain in regards to FM. It also caused Costochondritis which is comorbid with FM and can flare up a lot actually. It is inflammation in the cartilage in the sternum that causes nasty chest wall pain that radiates throughout when you breath… starts off as a sharp electrical pain you just can’t explain. It was intense because I ignored it for a time and when it did become quite noticeable I went to the doctor who said it was ‘stress or allergies’ so I ignored it some more and it became quite severe. I ended up in the ER and I said to the ER doctor that I didn’t know what the pain was only that it was getting worse and worse, it was hard to breath when I lay down it was so painful and I’d passed out when I got home that night after walking up the stairs. I said I had FM and wasn’t sure if that had anything to do with it. He said ‘I don’t believe in FM‘. I was shocked really. I had never encountered a doctor like that who would just deny I had what I had. So I told him what I had been diagnosed with previous to the FM… as if that would help. He sent me home… no tests or anything as if my pain was imaginary. Asshat. I went to my childhood doctor who did a chest x-ray and determined it was Costochondritis and treated it with anti-inflamatories… and I had to take two weeks off work to do so. It actually took more than six months for the pain to diminish but I was an undergraduate at the time and that was a summer job so I had the time to recover when I returned to school.
So you might get why I don’t often discuss FM when people suggest your pain is ‘stress’ or your condition does not exist at all. More often than not people don’t know what FM is and you have to explain it and it just gets complicated.



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