Sunday, March 31, 2013

Needing to Temporarily Suspend Personal Research

There are days in the life of a person who has ME/CFS/CFIDS, one becomes over-sensitized by seemingly everything:  noise, light, information, surroundings, and clothing.  Fibromyalgia patients have the same problems.  My doctor said I have both, but really I wonder if it is one neurological disease that affects many parts of my body.
 Do you ever wonder about the disease;  because even though you have been diagnosed, you still wonder if your doctor has any idea or even cares about the varied symptoms you have experienced over time?  Does your doctor encourage you to get out, when you end up getting more ill after having followed his instructions?  Do you ever want to give up figuring this thing out, because all the discussion and research seems to lead to nowhere as far as you are concerned?  If you feel this way, I understand.  That is how I feel today.

Sometimes, it seems all we can do is fly by the seats of our pants and hope we are doing what is right for our bodies.  Sometimes, we feel like our doctor's research projects.  "Well, we vill treat this symptom, and perhaps you will regain some of your old stamina.  Zee pain should go away.  Ah yes, nerves--take this anti-depressant, take this prescription, and this vitamin.  It appears your mitochondria are damaged, but vee do not know why."  All misspelling here was intended.  If you are of Austrian or German heritage please don't be insulted.  My doctors have had American accents and one with a lovely British accent, but I was hearing zee oder accent in my head.  So I hoped you smiled...heaven knows...I needed to smile today.

I went on an internet search today.  I think it was because last week, I read Adrienne Dellwo's blog post, Differentiating Between Chronic Fatigue Syndrome, CF and ME.  I have been experiencing post exertional malaise again;  also, I know I do not handle the sensory overload of being around too many people very well.  It seems like it is worse than it used to be.  Perhaps it is a combination of sensory overloads.  Today, it seems particularly bad.  What usually does not bother me makes me feel like I will jump out of my skin.  I began the day with fatigue, and have ended up with feeling like I cannot take another moment of the sensations that disturb me.  Usually, I am pretty layed back about things, but this is annoying and worse inexplicable.  (On top of that, I spelled inexplicable with no problem a moment ago, erased it and then I couldn't spell it,)  These are one of the many brain glitches that occur in both Fibromyalgia and ME patients.

My main point today is there are times we need to rest from our searching.  I am not saying give up, live and let live, forget about getting better.  I am not saying any of those things.    Sometimes, I think symptoms are exacerbated by continual research and the frustration of feeling like we have no real answers.  When one is already having a bad day may not be the best time to search.  Maybe, I look sometimes to remind myself this is a real illness.  It is only in the past week when I was getting ready to go somewhere, I noticed the dark circles under the eyes from constant fatigue.  Perhaps physical toll, other than weakened muscles and joints if beginning to show itself.  Often, I have asked myself how someone can look well and be sick, but I know it is true.  I have lived with it for years.  Stick a little makeup on me and I can fool most everyone.

So how does one know it's a bad day?  My first clue should have been the fatigue is worse than yesterday.  My second clue should have been not being able to make sense of what I was reading.  At best, I could catch main ideas, but I would have forgotten most of them right away.  At the time, I was doing some biblical research, and I remember thinking, "Why did he have to make this so long?  I wanted a simple answer."  There are other symptoms, but the list seems too long to go through sometimes.  

This is not one of my most positive posts.  I like to encourage you and show you how being more positive can help our situations;  however, some days are not like that for us. Sometimes, it is hard to see the bright side of life, even when there is one.  And it is the illness, the symptoms that pile up and become heavier on a certain day.  To say I never have a day like that would be untrue and unfair to you, as you wonder why you feel like the only one whose life has been decimated by this illness.  You cannot understand how other people seem to continue their lives with various illnesses like diabetes, heart disease, high blood pressure, and arthritis.  You would think they would understand.  However, I think the problem lies in the multiplicity of organs that are controlled by our central nervous system.  And we may deal with some of the other illnesses I mentioned too.

Don't be hard on yourself.  I say this to myself as much as to you.  Trust your instincts.  I am going to give you a link to something I read today, that made me feel better about when I know going out is going to be bad for me.  Today, I read about reducing and eliminating non-essential visitors in the life of very ill ME patients.  I also read that one should not encourage patients to do more activity than they are able to do.  Therefore, I would think that would also apply to patients who end up with their adrenaline higher than a kite after being in a social situation.

These struck me today, because I have often thought I would please others by doing activities they see as simple.  Even though one may have expertise and talent in an area, it is not alway something one can keep doing.  For a long time I could go to choir, and I tried to make a come back several times;  however, I always get sick with a flareup.  I have had to accept that I am in a different stage of  life, whether other people understand or not is their problem.  I saw number 3 and 4 on the list for caregivers, and I thought of all the times I felt guilty for not going somewhere.  Something inside of me says no when I should not be leaving the house, and I do not always listen.  Sometimes, I fall prey to what other people are going to think, or I want to do something, so I do it anyway. How many have heard that saying, "You play, you pay."?  Or, you work you pay.  That is usually the case when dealing with ME/CFS/CFIDS.  One has to be very discerning about where you are now, and find ways to manage extra excitement, like grandkids visiting or whatnot.  (I see grandkids as essential, although there have been times I have had to withdraw to the bedroom for quiet, or I could not have a visit.) I have a tendency to put my whole self into whatever I am doing, like talking to people.  Even talking on the phone can wear me out.

If you decide to read the material I have quoted or mentioned, keep in mind the symptoms we have seem to vary with where we are in our illness.  I believe one person said it varies by minute, by hour, by day, by weeks, and by months.  I have often thought exactly that same thing in living with my illness.  Do not compare yourself to others. I know from experience many symptoms abate for a time, then come back.  Some are always there.  Personally, I think the illness is strange and confusing.  So learning to have a balance to your life is exasperating.  But it is worth it to learn to pace and balance.  You may even develop a talent, which you didn't know you have -- one that is quieter, which is relaxing.

P.S.  Some of you may wonder how I write and read (usually with understanding and focus);  when often, I seem to stutter through a conversation hunting for the perfect word.   I did not have trouble finding words before this illness.  And other times, what my husband teasingly calls a "college"  word just pops out of my mouth.  I don't know.  What I do know, is I have always felt like my fingers were connected to my brain when writing, also I know how to use a thesaurus.  Maybe, some thing are easier for do because our wiring works better in those areas.  I do think the brains scans, which researchers do are very interesting.  Well, enough.  I hope this is helpful.  I have set some links for you.  Love and Prayers, Deborah 

*I found some of the information on the National Alliance for Myalgic Encephalomyelitis very helpful today. I am even thinking about some of the books they mentioned and some of the material that can be copied for caregivers.  I have a helpful husband, but this thing is complicated.  Would he understand more if he read this?  Of course, I don't want him to think I am a goner either.  I am worse, but managing;  and who knows, I may get better with summer.  I can always hope.  The testing and care is so poor in parts of the USA for this disease, that I am wondering if I was diagnosed properly.  I have to admit to being tired of doctors, and the cost of a "syndrome" many American doctors do not recognize makes one feel like a pariah.  Furthermore, one pays for insurance and insurance does not pay for FM, CFS, or CFIDS.  I do not understand this mindset.  So, we take anti-depressants and other pills, while being looked at as malingerers.  Maybe, it is improving some places.  I suppose I have felt like I needed a rest from the whole thing.  Most visits to the doctor are so short, I wonder if they even take the time to really consider what one might have.  So it is up to the patient many times to research, which I am too tired to do right now.  Sorry for the rant.  I don't often do that.

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It's always lovely hearing from you. xoxo, Deborah