Coping with Lingering Illness: Lessons Learned

[occasins]

I have suffered -- and I use the word advisedly -- with this for a year and a half. In dealing with the latest and most worrisome manifestation, tongue and swallowing problems, I have tried to put together what I have learned so far. There are some recurring themes that might help someone else out.

1." Yes, there's something wrong with me, just not THAT." Perhaps because of the lack of coherent medical opinion on the condition, or perhaps because unreasonable anxiety goes along with it for some, it is easy to forget that yes, there is a real, physical problem that can cause real symptoms. It is easy to get into a panic saying: "But I MUST have [insert your feared disease here] becuase there is simply no doubt I am having [twitching, weakeness, clumsiness, dents in my muscles, all of the above]." Remember, you can have all of these things going on for real and it is STILL not going to kill you or disable you. A serious, rare, disease that happens to manifest itself at some stages with a few SIMILAR symptoms has nothing to do with YOUR symptoms. You simply have a different problem, equally real, but far more common and infinitely less serious.

2. "My leg is twitching but it's all in my head." This is related to the above. No. You are not imagining things, going crazy, a weakling or a coward. You really are twitching, and you really have all the other symptoms. Now, for whatever reason, you may be more sensitive to the symptoms, and you may be prone to anxiety or obsessing. Facing poorly explained physical symptoms after being scared half to death by poorly-written websites is enough to mess with anyone's head. But, let's face it, some people are just wired differently, and their brains can get "stuck on scared" THROUGH NO FAULT OF THEIR OWN. Either way, you can't just "suck it up" and get on with your life with no further worries. If you have just been scared and are not prone to health anxiety, the more you learn about these things, the more comforted you will become. If you ARE prone to worry more than other people, it is very cruel to be exposed to these symptoms, but you have to admit your particular vulnerability, then take appropriate steps to address that problem.

3. "I could do this five minutes ago, but let me just make sure." Self-testing. You learn the physical tests (the ones I'm not going to repeat them here, because you shouldn't even be thinking about them.) So you do them. Again and again. Each time there's a little hit of comfort. Or maybe a little hit of worry. Either way, one test leads to another. If you are a self-tester, ask yourself: is that behavior rational? Maybe once, okay. But repeatedly? The answer is, no, it is not rational. I am not a doctor, but if that's not obsessive-compulsive I don't know what is. You will only prolong your suffering by self-testing. For one thing, you will never be satisfied. If people are still here scared after a battery of medical tests by top medical experts, your little test is not going to give you any lasting relief. Worse, YOU WILL ACTUALLY EXACERBATE YOUR SYMPTOMS. The tests are not real hard, but they are unnatural. Do them enough and you are going to cause a problem with your muscles that you WILL interpret as weakness. Twitching can actually be caused (or aggravated) by exercise. If you feel compelled to self-test, tell yourself the truth: you do not have this in any kind of rational perspective. That in itself can be comforting, in a way. And if you have ever had similar health worries about diseases you have read about in the internet, give yourself another point. Doesn't this path look familiar?

4. "The websites that scare you are not there to provide information for you to diagnose yourself." This may seem trite, but all those websites out there with the usual rundown of "symptoms" are not there for you. Think about it: they HAVE to list symptoms, because, well, what is a website about a disease without a list of symptoms? But they do a great disservice to some people because despite any disclaimer they might make, all you're going to see is TWITCHING and freak out. Forget about those sites. So they scared the snot out of you. Now you understand that your symptoms, despite sharing a similar description, really are NOTHING like those. I am convinced that my twitching, for instance, isn't even remotely like the sort of twitching associated with a serious disease. The more you understand about BFS, the more you realize that a serious, fatal disease hammers you out of a normal lifestyle in short order, and you don't have to sit around wondering. I sometimes get angry over the recklessness on certain websites. We KNOW a certain percentage of people are going to suffer on account of what is put out in a misleading and incomplete fashion. This is the information age. An "informational website" can be as dangerous as poorly designed chainsaw.

5. "We have nothing to fear but fear itself." Well, like "fear" is nothing, a mere bogeyman that any grown-up would be silly to have. If fear is ruining your life (and it absolutely can, no doubt, it can even kill you) then you need to deal with it. Your physical symptoms are real, but eventually your reaction to them is seen to be irrational. The answer is not to keep focusing on the symptoms. The answer is to face the fear, which is the REAL life-changer for us. Like it or not, in our over-stimulated-crazy-making modern lives, if this bulldog gets fastened onto your butt, you are not going to just ignore it. There are prescription drugs to get you through the worst of it, at least until you survive long enough to figure you have a future after all. Yeah, I hate 'em as much as anyone, but at 1 a.m. when I really can't swallow and am starting to panic, Mr. Benzo is a darned welcome sight. When your natural brain chemistry gets out of whack beyond certain parameters and you get "stuck on scared" through no fault of your own, it's fair enough to hit the molecular-level reset button in your head with the right drug. Sort out what you have to with God, your psychiatrist or your forum buddies, but in the meanwhile, you have a life to live. Don't let concern over your "precious bodily fluids" keep you from getting treatment, and don't beat yourself up over it.

SUMMARY: where you are now, I have been. Maybe just last week. Me and a whole lot of other people, and I'll probably be there again. I'll match you symptom for symptom. As could most of the other people here. You're not alone, you're not crazy, you're not dying. You do have a real physical condition, and you may have an irrationally fearful response to it through no fault of your own. There is a lot of wise help right here in this forum. (There are also the occasional cluster-bomb munitions left carelessly lying around, but life isn't perfect.)

You have a wonderful future ahead of you, a full, long life. And if you don't, it will be because of some stupid thing you never gave a second's thought to. Don't let this thing ruin another minute of your life. Get mad. Get help. Get away from the computer and do something that's so much fun you'll feel guilty afterwards.

Tim

 

[jsageurge]

Hey Tim, thanks for the excellent advice. It’s great to hear from you again, and although I’d love to see your smiling face as your Avatar, I’ve always gotten a kick out of your “worried guy.” He’s the perfect visual for what we’ve all experienced. We just don’t want to get stuck there, looking like that indefinitely.

Basso’s right, taking care of ourselves first is important, and does make you a better person. It’s not just self-indulgent. If your head is f$&ked up, how can you take care of your family, give your kids advice, etc? It’s for the same reason that the stewardess says to put the oxygen mask on yourself before putting it on your kids. If you’re unconscious from lack of oxygen, you can’t help anyone.

As usual, Basso has expressed his insight most poetically. Sunrises, sunsets, and deep kissing are beautiful. So are brilliant symphonies or a nurse taking care of a dying cancer patient with kindness and dignity. They are all just examples of things that express or manifest the Spirit of Beauty. When using romantic examples like sunrises and kissing, I wonder if people may sometimes miss his point, and think that things like Beauty are just nice sentiments, instead of real Forces of Nature that we can interact with, be transformed by, and use to help ourselves and others. I’ve heard "debates" that bring up “the dark side” of life, almost as if the contrast makes things like Beauty less brilliant, or even cancel it out. But that’s not the case. It’s just the opposite.

I don’t think I’ve seen a single sunrise this year, but that doesn’t mean that I haven’t seen Beauty. Last September, my mother (who has Parkinsons) was very ill on a respirator, and not expected to live. The doctors advised my father to “say goodbye.” I witnessed a healing that defied the medical odds, sending her to rehab and then home. Then in May, after she fell, X-rays happened to reveal a rare malignant bone tumor in her arm (good “coincidence” that she fell on that arm!). After several consultations, specialists at UMDNJ removed it, and once again she was back in rehab. I observed her, using her one arm, to help the patient in the next bed who could not use either of her arms. During this whole ordeal, my father became ill in March and his health was declining. He died at the end of July, only a week after their 50th wedding anniversary.

People often ask me how my mother is doing, expecting that she’s devastated. She is not. She has never once (except when she was unconscious for a couple of days) lost her sense of humor or appreciation for all that is right in life, regardless of what may be “wrong” at any given time. Of course she misses my father, but she knows as I do, that the lack of his physical presence, no matter how difficult, does not destroy the Reality of his Spirit. She also knows that my brothers and I will be there to take care of her when she needs us. She has been an amazing example of Light overcoming the “darkness that does not comprehend it.” She has not only demonstrated Beauty, but also Strength, Peace and Endurance. Real forces, not nice sentiments. Yeah, I haven’t seen any sunrises this year, but that doesn’t bother me at all. I’ve spent a lot of time sitting in hospitals, doctors offices, rehab facilities, and recently explaining, as best I could, what death really means, when my 6 and 9 year old kids ask about their grandfather. On the surface, it might not seem like much Light or Beauty was present. But that’s not true. You just need to develop the “eyes to see” it. And also to allow it to transform you, into something just a little bit better than you were before.

 

[ristinaL91]

Bill,

That is quite simply the most moving post that you have ever written. I can see why you are so special, look who you came from.

I know there is beauty all around that is easy to see and hear, if you take the time.......beautiful sunrises, sunsets, children laughing, leaves turning, lovers kissing, old folks still holding hands, Mozart, the Sex Pistols...just appreciating what inspires you. Allowing yourself to enjoy it. Take nothing for granted. Seeing the miracles in everything.

Bill, and Basso certainly get "it". I learned from reading these posts today, and to me that is something wonderful.

Bill, I have read posts from you regarding your Mother, I do not remember you posting one time about the loss of your Father this summer...... you went through all that, yet you never seemed to miss a beat in helping others here. I am inspired, and you make me want to be a better person.

ristinaL91

 

[MarioMasher]

Here's another old timer post that I think will be helpful reading for newbies. Remember, lots of people have been here (and through here) before. This website is not new. In time, we will all learn how to deal with this.

 

[occasins]

What a blast from the past! Anybody remember me?I joined in 2005 and was suffering before that. And lookie me, still here and walking around and everything.Yet today, for the first time in ages, I'm back to worrying about my "slow" right leg, my smaller right thumb... I even did the ol' toe-and-heel dance for the first time in years. But I've had leg problems for years now, and that's the thumb I broke. There's nothing really new. And I'm still twitching.Just goes to show you that some of us may always be "recovering" worriers. Under the wrong circumstances the old demon is more than happy to revisit.But I read a long post from some guy named occasins and it was pretty sensible, so I feel better And it made my day to think that my posts have helped other people out.