Archive for May, 2011

It’s Lyme Disease Awareness Month Again!!

I could type up a bunch of stuff about Lyme Disease right now. About how it has stolen several full years of my life and many, many aspects of my life over several MORE years. About how horrible and debilitating it is not just for the person who has it, but for their entire family as well. I could spout statistics to you or give you a VERY long list of symptoms my family (nearly all of us infected) have dealt with. I could recite scores of different medicines and supplements we’ve had to take… some of which have done wonders to help and others which only brought horrble side effects with no gain. I *could* do all that… OR I could share a link that came across one of my Lyme Disease email groups that tells about some of the brain problems that Lyme causes.

The brain problems are the most difficult to explain, the most difficult to understand, and the most difficult to see (obviously!) And for me they were the ones that ‘cinched’ the deal and convinced me there absolutely was something *wrong* with me and that I *had* to get help. That’s because, being born with Lyme, most of the physical problems I was having when I “crashed” a few years back, were just worsening of stuff I’d been dealing with my whole life. The physical stuff I could write off as being just a natural part of aging…at least for me. (Never mind the fact that I was in my mid-20s!)

While I could write off the physical stuff by itself (and had been), it was when my brain “crashed” that I finally realized I was truly sick…and that the physical stuff wasn’t actually normal at all…and everything was likely connected somehow.

The bad news was because my brain (which had always worked REALLY well before) was now malfunctioning on a grand scale, while I realized I was sick and with the Lord’s help even managed to get an idea of what was going on, it took me over a year to actually figure out what to DO about it. Why? Simply put… my brain was too sick to think!

Only by the grace of God and the help of a (now-best) friend who was also sick with Lyme, but in treatment and was making good progress over that year (making her better able to think than me by far!) was I able to get in treatment. For months I was pretty sure what was wrong with me but could not for the life of me figure out what to do next. I tried to explain the problem to my husband, but since my brain was malfunctioning, that didn’t work so well. It was only when my friend was well enough that *her* brain was functioning well enough to “take over for mine” that anything was actually done. I have no doubt that’s because *she* knew exactly…first hand…what the problem was despite my inability to explain things.

If this article had existed back then (and I’d been able to process enough of it to realize just how big of a jewel it is), I have no doubt that this would have saved me months of misery, as it puts into very easy-to-understand words just exactly what I was dealing with and why (and how) I needed my husband to help me. If only he could have read this back then… =)

So, without further adieu, here is the wonderful treasure of Lyme Disease Awareness…

This Is Your Brain On Lyme

My Matthew and Me

I live with an amazing little man named Matthew. He happens to be my son. He also happens to be an extremely complex little guy. He wouldn’t like me calling him ‘little’, by the way. The thing is, though, he IS little. Compared to this great, big, scary world we live in he is tiny. Even compared to other boys his age he is small (physically). He will always be my little boy, my little man.

There’s a specialness to the relationship between a boy and his mother. I really believe that. In many ways, I think my relationship with Matthew is even *more* unique because of his challenges. Oh he certainly has no shortage of those! He’s only 12, just a baby in the scheme of things, and yet he has a list of medical issues longer than his name. He takes many pills every day, though thankfully not as many as he was taking a year ago! He knows how to set up and use a nebulizer, how reconstitute injectable meds and prepare a subcutaneous injection, he knows how to use inhalers of various kinds, and how to use the emergency injection device that could save his life if he comes into contact with almonds or peanuts. He knows first-hand what a Jarisch-Herxheimer reaction is (and hates them, of course). He is very familiar with the deep, dark depths of despair, and no that is not an exaggeration unfortunely. He doesn’t need to read Jekyll and Hyde… he lives it daily.

He rides a major roller coaster of emotions and energy, with sometimes dozens of highs and lows both in a single day. His bipolar disorder alone would cause this, but to add to the complexity, so would his systemic Lyme disease and bartonella infections. He starts each day with a handful of pills and an inhaler. He ends each day with another handful of pills, an inhaler, a nasal spray, and an injection. Often he spends the time in between using the nebulizer every couple of hours.

This roller coater of emotions and energy levels combined with the difficulties breathing, the hayfever symptoms, and often physical aches and pains all adds up to one very troubled little boy. My heart aches for him over all the struggles he has in his life, knowing there will be even more in the years ahead. I only wish I knew more how to help him. I know he feels all alone because he tells me that no one knows what it’s like to have all these problems. I really wish he could meet a strong Christian boy or man that has dealt with bipolar and maybe some other medical issues as well that he could talk to. Mom’s ok, but sometimes a little guy like mine needs something more.

I don’t know but what his extremely high intelligence makes things even worse for him. He understands so much more intellectually than most kids his age. He’s also got a strong independant streak in him that if controlled and funneled correctly could make him a very great leader. Especially since he is also full of strong compassion for others. He just feels and does EVERYTHING so much more intensely than most everyone I know. I guess that’s to be expected with bipolar disorder, but goodness! I don’t know how to help him control and direct those strong passionate feelings in constructive ways. I really think his heart just tears in two sometimes thinking about others lost soul’s, and then other times it seems like his heart is just exploding with anger at the world and everyone in it.

You would think that being bipolar myself I’d be able to help him more, but that’s just not the case. I *feel* for him. I *understand* him. I *think* the way he thinks (really, it’s uncanny how alike we are), but for the life of me I don’t know how to teach him to DEAL with this disorder. I know for myself I pretty much just ‘go with the flow’ and that’s ok for me. That works because I don’t get the super intense rage and anger nearly as often as he does. For me, my emotions/moods are *almost* ‘normal’ or ‘stable’ the last couple of years at least because of my being able to decrease drastically my bacterial load (which was only aggravating the mood disorder) and also taking an antidepressant.

For a lot of people with bipolar an antidepressant alone is a big BAD idea, as it throws their moods even more to the ‘high’ side. On the high side it isn’t all peaches and cream and rose-tinted glasses. Not even close. Being too ‘high’ can bring the major rage problems, extreme insomnia, complete lack of impulse control, and sometimes even a loss of a sense of reality. Every person with bipolar is different, of course, and so the ‘high’ look different for every person. For Matthew, he has all the above along with super irritability and a super-inflated sense of self (he’s the best _____, the most _____, etc). For me, my highs for the most part bring increased ‘projects’. I tend to get more done when I’m in a high period. I have more energy, I am more excited about things, I get antsy to start new projects, and so forth. Even my highs aren’t all good, though. I also tend to not be able to sleep (extreme! insomnia) and I also tend to start more projects than I can possibly finish or even juggle! I also tend to spend more $$ than I should. I take on more responsibilities than I should, I make more promises to more people than I should. Put simply I overextend myself in nearly every way possible. When I was at my sickest physically with the Lyme disease, this would mean I’d also make myself even more sick when in a high period, because I’d ‘overdo’ it and my body would need several days to recover. My highs tend to last for several days at a time. Matthew’s tend to last anywhere from a few minutes to a few hours.

For me, *my* bipolar disorder has more distressing (in terms of the effects being a *problem* rather than a good thing) lows. When I’m in a low period (and these used to last for weeks or months at a time) I’d have no energy, no interest in anything. I get super paranoid about everything, and I feel completely worthless and horribly guilty… about everything. I feel guilty doing anything for myself, I feel guilty for not doing more for others, I feel guilty for feeling guilty! I’ve been down so deep I literally hoped I would die and tried to passively commit suicide many times. Thankfully, for *me*, taking an antidepressant by itself has not thrown my highs into overdrive. Instead it has limited (by a LOT) the lows. Not only the depth of the lows, but also the frequency, and the length of them. Nowadays I’ll feel blue or a little down on myself for a few days maybe, but I haven’t hit rock bottom since starting the meds, nor do these lows last anywhere as long as they used to.

For Matthew, he was put on an antidepressant as well, and it *did* increase the highs… or at least the problematic symptoms of them. Or maybe it didn’t actually increase them, but it let them be noticed more, as the lows were better. He has ADHD on top of everything else, and so the lack of impulse control and ability to pay attention to his school work meant we added a med for ADHD. The impulse control has definitely been helped, but it’s not perfect by any means. He’s currently off the antidepressant and we’ve increased his bipolar meds, but he’s still not stable. Plus the increased dosage has caused another problem… extreme sleepiness.

The poor kid can’t seem to win for losing! I love both my kids so very much, but there is a very distinct difference in parenting them. I know all kids are different and therefore parenting is different for every kid. I get that, I do. But my goodness parenting these two is even more extreme than night and day! Meagan is a pretty easy kid to parent, even with her discipline difficulties and she does have some as all kids do. Matthew on the other hand… NO parenting technique in terms of discipline seems to work with him. We’ve tried everything we know to try and the kid still seems to be floundering in the giant sea of life. It’s like he’s never been able to even learn to tread water, let alone float, or swim. Meagan might tire out sometimes, or get lazy with her swimming or whatever, but all in all she keeps her head above water, and is at least heading in the right general direction.

I just pray Matthew will keep trying to hang on to whatever life raft he can reach and keep trying to figure out the whole swimming/floating/treading water thing. Sometimes he seems so discouraged and tired of trying hang on, that I worry he’s going to just let go one of these days and sink.


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