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The people who read my journal regularly most likely already know this, but since I do not expect new readers to go back and read every post I have ever written I figured for new readers I would post it again (and if I remember I will link it to the links sections)

The bulk of this post is under cut because it is medical related and I know not everyone is going to want to read it, but the jist of the post is, occasionally my medical condition will get severe for long enough that instead of a few days between posts, it could be months.

So I have some sort of nervous system disorder, which one it is specifically we do not know, the only thing my doctor would commit to was IBS-A (http://en.wikipedia.org/wiki/Irritable_bowel_syndrome) .

I have probably had the disorder since birth based on what my parents have told me since it getting worse, but since when I was an infant IBS wasn't something most doctors knew about, they just thought I was fussy so we don't really know when or how it started, or if it was just something that I was truly born with (that seem to be rare for infants to be born with active IBS but I guess has happened).

I have also always had headaches, but I always just thought they were tension headaches when I was in school. We had weighed my backpack once in college and it was more than half my body weight so you wouldn't be surprised I had headaches. I wear glasses so when the headaches started getting worse and more frequent I had my eyes checked, but for some reason didn't equate the lack of improvement from the new glasses with something more wrong than just having needed a new prescription. Then a major migraine hit, but before it did, something that had never happened before came on, I had mental fogging, didn't know where I was in a place I would be twice a day every day of the work week for the last year and a half. I now have very regular (daily) migraines, some are short (few hours) some last two or three days (which is usually when I start crying from the pain).

When people have migraines there is normally a pre phase they go through kind of like a warning signal telling you to go into a dark quite place to try and prevent it from being any worse that it could be if you did nothing to help it. For most people this seems to be a visual thing, for me is the rarer mental fogging which means that even when the pre phase hits, I usually no longer know what is happening so I don't remember anything from the pre phase, the migraine phase, or the post phase, which is also mental fogging. This is probably the only reason why I am still sane.

There do seem to be three different options for me when it comes to the pre phase and that seems to relate to how long the migraines will last and how bad it will be. To describe mental fogging for me, what little of it I can actually explain, and please remember that all that I know about these phases is based on what Kevin (my wonderful husband) has told me about it after it has come and gone, it is like actually walking around in a fog. Let us say that you and a friend are carrying a very large board down a path and it is a foggy day. If I am having light mental fogging, which is still enough to consider me disabled, I can see the person at the front of the board, but I could only vaguely tell you what they looked like. What happens in real world is Kevin asks me a question, he can actually see me trying to work out what the question was, then work out how to respond, and then very slowly speak the response, although the response may be missing some words and/or they sound very slurred, so the average person would definitely be able to tell that I am disabled, even on the phone based on speech pattern alone (or they might think I was drunk, but since I have never had alcohol in my life, that would be incorrect). The second level of fogging would be like seeing the outline of the person carrying the board at the front, but really not being able to discern any details whatsoever. In these cases Kevin asks me a question and for the most part I just smile back to him and really cannot make any words anyone would actually be able to understand. The speech is worse than slurred, it is almost completely gone even thought I think I am saying something. This is probably when I get most frustrated because I know there is a thought, but I can't describe it to anyone. The last and most heavy phase of the fogging would be like if you couldn't see the other person carrying the front end of the board. When this happens, if Kevin asks me a questions I just smile, which is basically what I do whenever anyone talks to me so it is probably more of an automated response to attention than anything else. I can't even really make noises at this point and I also don't get frustrated because I am completely unaware of what is going on.

After around a year and a half of migraines which the doctors agreed I had, but would not commit to as a diagnosis, I developed joint and then muscle and then finally long bone pain. The pain sensation is not just in one area, sometimes it is the legs, sometimes it is the back, sometimes it is the arms, some times it is one leg and the opposite arm, it is very random seeming for now because we cannot find a pattern. I was already getting dizziness which made exercise difficult, but now most days it is virtually impossible, so on days when I am not feeling pain in a joint/muscle/bone that I can exercise, I tend to over do it.

Unfortunately in all of this we have discovered that I am very chemically sensitive as well. This may be because of the IBS, it may just also be one of the joys of being me, but every medicine that they have given me to try as caused either a severe allergic reaction or one of the more severe side-effects. I even had an allergic reaction to an allergy medicine, I didn't know you could have an allergic reaction to an allergy medicine, I thought that was the point, to not have an allergic reaction.

So somehow my brain has managed to cope with the pain and I have not sunk into depression, which I do count as a miracle (my mother suffers from depression and by all rights, I should have it by now because of the years of pain, but I don't.) So we go on the best we can, I try to keep myself distracted on the less bad days with The Sims and post about it, but these intervals of less bad days are usually short lived and the worse days come back and I unexpectedly stop posting for a few months. Doesn't mean I have given up the game, just means that for a while, my brain doesn't want to work at all, and my nervous system has decided everything will hurt at once. Fortunately once I come out of the worse period I don't remember it so for me it is like a very long nap, although I am usually exhausted after it because you don't sleep much when you are in a lot of pain.
Wow to managing that many children with Menieres and fibromyalgia, I've been trying to figure out how to manage one and not thinking it would be possible (the baby would probably never leave the floor the way some of my days go).

I have been learning that despite the conflicting info the doctors were giving me about sleep and how much I should get, I do seem to need at minimum 12 hours to even come close to functioning at all and 16 hours tends to do better. My primary doctor and neurologist kept telling me not to sleep more than 8 hours because I guess too much sleep can cause migraines as well, but I just cannot stay awake that long. I also have sleep apnea, but I am apparently allergic to the material they use to make the masks for the cpap machine because even with just the mask on my air ways would start swelling shut after a few minutes. They tried several different masks before they determined why I couldn't wear them. Right now I am using an adjustable base bed, the only problem is I tend to roll over on to my stomach while the bed is at an angle so I wake up with back pain.

Kevin says we have been waiting since April last year but recently we have been having more notices of doctor visits required, so maybe that is a good sign.