Fake Feeling Well

MyMigraineConnection has been hosting a monthly chat session for a few months now. I think they are real helpful and MMC has improved the way the chat sessions are run with a new software they use.

The next live chat is this Wednesday, July 21st at 2 pm EDT. You can go to the site now to set yourself up to receive an email reminder of this event. This chat is scheduled to talk about Summer Migraines. The July Headache Blog Carnival on Somebody Heal Me by Diana Lee was on Enjoying the Summer Despite Heat. If the scheduled topic is completed before the chat time is over, they will move onto other topics and questions about Migraines!

I found one of the last off topic chat session comments very interesting and have been thinking about it for some time. I couldn't make or contribute to the session, but I could follow along what went on afterward which is another great perk about the chats! The more people who join the chats while they are going on, the better the sessions will be. If you can't make the chat, they are posted after to allow anyone who could not make it, still read what was talked about. Anyway, one quick off topic blurb that came up had to do with people who fake feeling well.

I've been thinking about this topic since I read the chat. Do you ever fake feeling well? I don't intentionally do it, but I'm sure I come across this way. I know I have chronic Migraines and most people don't know when I am not feeling well. I have learned to slow myself down which has been hard.

Yes, I do feel the pain and all of the symptoms that accompany my Migraine attacks, but I went many decades in ignorance. I disregarded my headaches as best I could as I was told at a young age there was nothing that could be done to help me. I now know that this was not good for my health as Migraines Can Cause Brain Damage plus if we fake feeling well, it defeats everything we work so hard to accomplish.

I know I find all of this so difficult too because I support my family which includes two children who are currently in college. I know I need to take care of myself, but I also need to take care of my family. This all interprets to I have to do what I can to keep my job, what's best for my health and my family. Not so easy when it comes to chronic Migraines.

It's important for us not to fake feeling well and to educate others as much as we can about Migraine - to stay real and let people learn what Migraine is all about. I try not to complain because I don't want to be a whiner or to have someone not believe something I say. Knock on wood, I don't get sick very often if you don't count Migraines. I know that's stretching it a bit.

I don't think I purposely fake feeling well whether it is with a regular sickness or with a Migraine, but I don't always do much to help myself or let others know how I am feeling. The only person at work who has ever seen a Migraine on my face has been my boss. I don't see him very often as we don't work in the same building, but I do talk with him most days. There are times when those closer to me know I have a Migraine by the way I talk and even conduct myself.

We need people to understand that Migraine is a disease, not a headache. I have this saying on a coffee mug on my desk as well as the Fire his sorry butt mug and use the one I'm in the mood to talk about if the subject arises. I don't have any problems educating anyone or giving them any information I have about Migraine and usually look forward to these opportunities.

Have you ever faked feeling well?

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Reasonable Light Accommodations?

I am always trying to think of ways to appear or act more 'normal' so I am constantly analyzing everything I do and everything around me in terms of how it might affect my Migraines. Lately at work, I tend to hibernate in my office way too much where I don't come out to visit my team or join other meetings in a conference room. Although it has been real busy at work, I don't think this is the full reason I don't leave my office either.

It's no secret that I have an aversion to lights. I already have a light accommodation at work where my company put these amazing light sleeves over the fluorescent lights in my office. They filter the lights which make it possible for me to stay in my office more then fifteen minutes. This is a reasonable work accommodation.

I have found that I don't spend enough time with my team out in their aisle because of their lights. I find I avoid even going out there in the first place because of the fear I might get 'stuck' out there.

I did have an experience on a more light sensitive day where I was stopped by multiple people that report to me with work questions. Despite saying I was having a hard time with the lights and another teammate reiterating this sentiment for me, the questions kept coming anyway.

This is where I often wrestle with myself. I have a hard time with the guilt of trying to be a good supervisor while trying to do my work balanced with the responsibility of taking care of myself. I know I cut my answers short where I didn't elaborate as much as I normally would have or as they were expecting. I believe this is a big reason I don't go out to my team's aisle as often as I should now.

I have also found myself dialing into some meetings which are held in my building like the remotes log in because of my sensitivity to the lights. I figure that it is better to attend meetings this way to get the needed information instead of blowing the meeting off all together or going to the conference room and getting attacked by the lights. To give you an idea, some of these meetings are run by my boss's boss (the guy in charge of our division) so it's probably better that I attend in person if possible.

I have been contemplating asking my boss to have the fluorescent light sleeves put on my team's aisle and in half of one of the conference rooms. The sleeves I have in my office have a clear side which will filter some of the UV rays and flicker from the light. The sleeve can also twist around to a graduating grated filter side which will filter and make the area darker. I have my office twisted to the darkest setting. I mention this because I'm sure that some people on my team would like it a little darker while others would want as much light as they could get. This would allow them that flexibility and hopefully, give me a little relief.

Do you think it would be a reasonable accommodation to request to have these light filters put on the fluorescent lights in my team's aisle? What about half of one of one of the conference rooms? I wouldn't be asking to have the whole floor done, just this small section where I would rationally go on a regular basis.

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Coping with Stress and Migraines

It seems like I am having a harder time dealing with things lately. I can't really pinpoint what it is, but I have so much running through my mind all of the time where sometimes I don't know what to do. I start to feel so overwhelmed and useless to everyone, especially me, but still have so much to do. That never goes away.

Whenever I get like this way, I continually ask myself the same questions over and over. Is it my Migraines that are making me feel this way? Is it the Migraine medications I take that is helping to make me feel this way? Is it everything that is going on in my life right now? Is it something else? Or is it a combination of any or all of these questions?

I think we all have stress. Sometimes it's easier to deal with than other times. When stress levels are up, do you ever try to figure out what is different about the times when Migraines are easier to handle from the times when it's more difficult to get by? For some reason, lately has been one of those periods of times when I feel I am not managing anything so great which is not helping my Migraines and symptoms.

There are all different types of stresses going on - work, family, Migraines, etc. It's tough to keep trying to figure out new or other ways to help our Migraines. Some of these plans work, some don't and some only help a little. This doesn't even touch on the time and money that goes into the research and various strategies we undertake ourselves.

My job is also getting more and more demanding right now. It will continue on this path for a while longer. There are also family challenges like my two children are home for their college summer break. It took them a little while, but they both finally managed to find summer jobs. They were lucky; many of their friends still don't have jobs. Before I know it and before I'm ready for it, my kids will be going to be back off to school. I love having them home even if I don't see them very often because of our busy lives.

Although they have reduced some, my Migraine levels are still too high. I have to be extra careful in the way I handle everything when my stress goes up so I can try to keep the number of Migraines I get down. Even though I believe stress is not a Migraine trigger, it can exasperate my existing triggers so I will Migraine much easier than normal.

For these next coming weeks, the best way I'm going to be able to cope with everything and keep my Migraines down, is to make sure I do everything I can to take care of myself. Some of the things I need to do or be more cognizant of would include:
> leave work at lunchtime - even if I feel I have too much to do and can't afford the time to get away, I need to get away
> leave work on-time - even if I log in from home later, it will be less stressful with no office interruptions
> make sure I eat well
> make sure I get enough sleep at night
> drinking enough water
> getting up and away from my desk as much as possible
> avoiding as many known triggers that I can

These are some of the things I can do pretty easily to try to reduce my Migraines plus I can look for my known symptoms early so I can treat an oncoming Migraine quickly. I have to try to reduce my stress especially during this time. Another thing that usually helps me is to take some time to do relaxation breathing or only fill a cup of water at a time so I have to get up and walk around to refill my water instead of having a whole days water supply at my desk.

What are some of the tricks you use to cope with your stress to help keep the number of Migraines you get down?

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Migraine Examples used in Company Meeting

I attended an LOA webinar at work this week for supervisors. It went over the different LOA types my company offers and how we need to handle things when an employee requests an LOA.

Wow! So many things to open my eyes. No, not about our LOA policy I already have a lot of experience with that with different employees and from my own research. I was surprised at what supervisors thought they could ask when someone applied for an LOA and how my company will handle some intermittent LOAs.

What really started ticking me off about this meeting was that the presenter kept using Migraines as her example. Different people would express their opinions throughout the call; not necessarily on the Migraines, but there were some things that really left my mouth wide open. This was not the place to get defensive, talk back or educate anyone. It really was not the purpose behind using these very poor examples.

At one point, the presenter used an example of how if someone in my company was on an intermittent LOA for a chronic condition like Migraines was out for three days in one week instead of the two that was filled out as their guesstimate on the doctor's portion of the FMLA form. My company would contact the doctor about the extra day taken off. They said they never believe the employee about anything and if the doctor said two days a week, that's what they use. If the employee is going to exceed that, they would need a new form filled out by the doctor.

The part of the presentation that really got under my skin was when the presenter used an example if the company wanted to get a second or third opinion on a condition for an LOA. They said if your doctor signed the form for an intermittent LOA for Migraines, the company could send you to another doctor for a second opinion. They said this second doctor could find that all you need to do is to take a couple of Tylenol to feel better and that you do not need intermittent leave. This is where the third opinion would be needed.

At this time, I was so glad my phone was on mute because I could not hold back the noise that came out of my mouth. As I said, this was not the place to give a dissertation on Migraines and what an idiotic statement that would be for a doctor to say.

I won't go into all of the questions asked by the supervisors on the phone, but some people tried to ask the same question the same and different ways many times - like can I ask the employee 'what's wrong with them'? How many different ways can you say - NO. The other popular question was if the supervisor could deny the medical leave - NO! We're not doctors.

I do realize that I have probably looked into this more than other people who were on the phone especially since I've been contemplating whether or not to apply for intermittent leave for a little while. I have the forms printed out and had decided I would make my decision by my next doctor's appointment.

The day after this LOA meeting, my team had our annual meeting with our HR Director to go over different things. She went over the leaves policy, calling in sick and how we will be getting a new sick policy in a few months, but we don't have the details yet. In her presentation, she mentioned that if someone says they are even thinking about applying for intermittent leave for different reasons, that she would take them by the shoulders and shake them to go for it for job protection reasons. I think I am leery because I'm not sure it won't be looked upon badly.

Even though it can't legally be held against you, I know there are ways around it if they really want to get rid of you even if it is just for health reasons. With everything that had gone on this week, I am still leaning toward applying for intermittent leave. Since they are revamping the absence policy, I feel I may need the job protection offered by FMLA even though my current boss is very good to me in regards to my Migraines because you never know what the future holds or the new policy.

If I go forward, I have to try to figure out a good guesstimate of the number of days per week or month that I would be out to use on the LOA form. I don't want to overestimate the number of days I will need, but I don't want my leaves department to call my doctor if I need to take more unanticipated days off either.

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Shades, Visors and Migraines Continued

A few months ago, I started a silly experiment where I would feel funny by wearing a visor, sunglasses or whatever it took to help with my Migraines while out in public. I don't think anyone likes to be an outcast, but honestly, I don't view it like that especially anymore.

I had written about my first week of the experiment where I wore some shades inside the store while I went food shopping. I even bumped into a neighbor who didn't seem to notice I was there. Well, the second week, I went for the visor. It was great!

As soon as I put it on, it gave an immediate release to almost everything that had started building up in my head. I felt like I could make it through the whole shopping trip mostly unscathed. I really did not care what I looked like or who was looking at me funny.

The following week, I found myself at a car dealership for an oil change. As soon as I walked into the waiting room, I was in near panic. I needed my visor and it was in the car. At this point, I didn't care. My car was still on line and in sight so I went back out to my car and took my visor inside with me. Ahhh, immediate relief again. Food shopping was the next day and it was time to try the visor and shades together.

It was too dark with both where I was having problems reading labels which I must do due to Migraine food triggers. I ended up taking the shades off and leaving the visor alone. A few different times I tried varying the combinations, but I found the visor worked best. The shades alone allowed too much light to shine through the top and sides of the shades although it was better than nothing at all.

I wear my visor every week I go shopping now. I really don't care what I look like or who is looking at me because I feel so much better with it on than when I don't have it on. Every so often I still have a tendency to forget it in the car, but I will get a quick reminder as soon as I step inside of the store and will turn around to get it right away.

When people do look at me funny, I like to think they are just trying to make out the symbol on my visor which means something to me, but is not an everyday emblem in my area. I have also bumped into many, many people I know; some other neighbors, people I work with and I've even seen an old, fired neuologist. Yes, I always have my visor on and I always keep it on. No, no one ever asks me about my hat, but I would gladly explain why I wear a hat inside while shopping if they really wanted to know.

I was also hoping to add in different shades with different tints into my experimenting. Unfortunately, when I went to my eye doctor to hopefully get some better answers, he was not helpful with tints and was really disappointing with other things as well. Despite our long relationship, I will be seeing a different eye doctor for my next visit and will be prepared to ask pertinent questions so I can steer toward good answers.

Don't be so vain that you won't wear something to shade your eyes if it will help avoid or lessen a Migraine attack while you are indoors. If someone does make a comment, who cares? You are probably feeling much better protecting yourself in this way than if you developed a Migraine; you are probably feeling much better than how you would feel about anything someone could possibly say to you.

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More Migraine Education

Do you ever feel like you can't get away from Migraine even when you're not experiencing one? What I'm talking about is I was watching a movie where there was a girl who was in foster care. She lived in a house with many other girls and all of the foster girls stayed in the same room.

In the foster home, they were having a party with very loud music. This is when the thought came to my mind about what if one of these girls had Migraines? Would anyone there know what they were? Would anyone there understand? How would they deal with the loud party? It makes you wonder and worry about all of the Migraineurs out there who don't know what is going on even with themselves.

My own story is that I did not know I had Migraines for about thirty-six years until I was finally correctly diagnosed a little over four years ago because I was originally misdiagnosed with 'just headaches'. I survived because if the music was too loud, I left, but I didn't really understand anything either. I wasn't raised in a foster home, but I did grow up in a house with many children where I was in the middle of the bunch.

I had so many Migraine symptoms over those years and still had no clue what they were. The diagnosis of Migraine never crossed my mind because that is not what my doctor said I had. I remember thinking that I could not imagine what Migraines must feel like if this is what 'just headaches' were like.

In all of those years, I never put a connection together with seeing, smelling or hearing things that weren't really there, being sensitive to loud music or light, periodic stuttering, nausea and so much more to my 'just headaches' that medication wouldn't even touch so I never took anything for them.

It took a big incident for me to be pushed into looking deeper at my 'just headaches'. This is one reason it is important to get the education out around Migraines. People need to understand what Migraine is; everything around Migraine and that it is not 'just a headache'.

Once I learned about my own Migraines, that was the start of my getting my life back in control. So much was going on before with me which I just did not understand. If you want a better understanding of a typical Migraine attack, here is an article on the Anatomy of a Migraine which goes through the four possible phases of a Migraine.

Once I learned about my son's Migraines, we got together and did a lot of talking and educating around Migraines. His Migraines have since gone down to about one per month. By educating him and being able to identify things that would trigger him, he is able to help himself. We still hope to get them to become less frequent, but he's definitely headed in the right direction and he's doing great. With a little bit of education, we were able to help his Migraines tremendously.

We need more Migraine education out there. It's not right to go around not understanding what is going on with you or thinking that you are abnormal. Contrary to most of the education I see out there, OTC medications don't work for everyone or alleviate their Migraine symptoms. Getting control and maintaining control of your Migraines takes a lot more education than popping an OTC pill as could be demonstrated with my son.

Of course we also need a lot more research on Migraines, but that's a whole different story for another time.

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