Education about CFS/CFIDS/ME for friends and family of mine…

About CFS

(Excepts pulled from http://www.cfids.org/about-cfids/default.asp)

Chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (ME) and by other names, is a complex and debilitating chronic illness that affects the brain and multiple body systems. On this portion of our website you can find detailed information about CFS, its symptoms, diagnosis, treatment, important research findings and how it affects the lives of those who live with it everyday.

Whether you are a person with CFS, a medical professional, a caregiver or just curious, we hope that the information you find here will improve your understanding of this devastating illness that affects more Americans than multiple sclerosis (MS), AIDS or lung cancer.

 

http://www.cfids.org/resources/for-those-who-care.asp#Contagion

Suggestions for Friends:
Friendships may become strained, may be strengthened, or may dissolve in the face of chronic illness. The give-and-take in a friendship becomes unbalanced when one person is ill. Many ill people become reclusive and distant, especially during relapses, as spending time with people requires energy. Since energy is in short supply, your contact may be less frequent than in the past.

  • Recognize that although the person may seem "normal" when you're together, you may not see the relapse which follows activity. Many people with CFS want to function at their best when with their friends, but privately pay a price later.
  • Your friendship is needed now more than ever. Show that you care.
  • Discuss feelings of rejection and try to work through misunderstandings. Ask questions about things you don't understand. Discuss options and set ground rules for continuing the friendship: Will there be less contact? Who will call whom? Will it be clear when he or she needs to end a visit or conversation?
  • If you have doubts about your ability to continue your friendship, examine the reasons for this: Fear of contagion? Anger about postponed plans? Tired of hearing about complaints and symptoms? You may be able to solve these problems together and continue the friendship with mutually agreed-upon changes.
  • If you are unable to continue your relationship, express this in a straightforward, yet caring manner, rather than simply disappearing. Let the person know that he or she is not the problem; the illness is.

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I am posting this in the hopes that people will become more educated about this.  I am still learning more about it myself and trying to adapt and understand it.  Thanks for reading.

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Medical Updates

These were too long of updates to put in a status post, so decided to blog it.  I saw my cardiologist yesterday, and the results of my echocardiogram show an enlarged heart in the weaker part of the heart and it has progressed to one of the ventricals.  It has also caused one of the chambers to become misshapen.  Lovely huh?!  He said that its the result of having untreated high blood pressure.  Funny.  I see a bajillion doctors for the last 2 1/2 years and not ONE says that its so high I need medication, but as a result of it now I have permanent damage to my heart.  Whenever I have extreme pain from this CFS (or whatever this is — some auto immune disease) my blood pressure does go up, but it usually goes back to semi-normal levels.  It's just over the last 2 1/2 years, I've had a lot of pain.  The doc said that the damage can't be changed, but I can do things now to keep it from getting worse.  One is now taking high blood pressure meds, decreasing sodium intake, exercising more (which has been difficult so far with CFS, but hey he's the doctor).  So my goal is to lose 10 lbs (to start with), and so far day one of decreasing sodium intake fairly good.  Probably shot it last night since we went to the movies and had popcorn!  But day 2 trying again. 

I am on the tale end of this most recent flare, so I am able to get more accomplished each day again.  Thank you Lord! 

Joe's leg is doing a little better.  They have him on a second antibiotic now (2) and said that if it doesn't start showing improvements then he will have to go to hospital for IV antibiotic treatments.  He has a re-check on Friday.  So we'll know more then. 

I see my neurologist next week about the seizure I had so I should know more next week.  I don't know about all these docs anymore.  I get so frustrated at times. 

Well, best get up and get going for the day.  Am trying to take it a little easy today since I did a BUNCH yesterday and day before.  Baby steps.  Even got out for a nice brisk walk last night.  Was so beautiful out.  :-) 

I have many things to be thankful for, so the Lord and my thankfuls are going to be in the forefront of my mind.  My heart, mind and soul are in the Lord's hands and His will be done!  I love you Lord.

 

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Life Changes

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So many life changes going on right now in our home.  Hannah will be getting her drivers license next week.  Nicole has a job.  T.J. is heading off to a university soon.  Lacey has her own apartment.  Zack is doing drivers ed.  All of them have friends that are driving, voices that are changing. 

They are getting more and more independent as the days go by.  I know this is a good thing, but really, we're heading into a season that is different than I've been in before.  Hannah is already even talking about "when" she moves out.  (crying here)

It's fun seeing them become the adults that God has designed them to be, but it's also hard because it's letting go a little more control and trusting them.  I just want them to have good lives.  I don't want them to make the same stupid mistakes I made.  I want them to make good choices. 

I started worrying last night about T.J. going off to college, and then I realized that he is the Lord's and that the Lord will care for him and take care of him.  It's my calling to pray for them, help them when they ask and do what I can. 

The scripture I've held onto tightly is "train up a child in the way he should go and he will not depart from it."  I believe it's in Proverbs.  I just want them to have good, healthy lives. 

It's just a different time.  The house is quieter at times.  And then there are the times that we have a house full of teenagers — which is quite interesting and fun.  And loud!  I really am not looking forward to them moving out.  I know some people do look forward to that time in their lives, but I love all my kids — messes and all.  I have no choice but to embrace it – I can't fight it.  Maybe I'll get another dog!  :-)  Just kidding honey — I think Joe would get a hint upset if I brought another pet home! 

Ta ta for now!

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