How to Interact with a Person who has CFIDS

I found out that a more accurate name for CFS is CFIDS (Chronic Fatigue and Immune Deficiency Syndrome) so I will be using CFIDS instead of CFS from now on.  

After being diagnosed with CFIDS I have gotten many questions about it.  It is totally fine for anyone to ask me whatever questions you have, but it's hard for me to come up with answers because of a lack of energy to talk about it and the brain fog makes it really hard for me to think in the moment.  Because of that, I am going to explain some things about CFIDS that I have been asked a lot.  If you are learning about CFIDS on your own, the best place to get information is CFIDS Association of America.  I looked at the advice the site gives friends and family for helping someone who has CFIDS, and it says exactly what I was thinking but couldn't explain!  Just so you know, I will probably be posting/copying a lot since it is very hard and exhausting to come up with my own way of saying things. I have highlighted the advice from the site, and my comments are in black.

• CFIDS affects every aspect of an individual's life.  Be aware of the emotional struggles that a patient goes through. Definitely...Every day I realize there are things that I probably won't be able to do again, and it makes me very sad, frustrated, and angry.  One part of treatment is writing out things that you are upset about and finding something good to replace it with.  I will be doing that later this week.  Around others I try to be as positive and uplifting as possible, but there are many times when I'm alone when I definitely have trouble getting a hold of my emotions.  Please don't assume that nothing about this upsets me and that it hasn't changed everything I thought my life would be like.  It has.
• CFIDS is an invisible illness, meaning that there are few obvious signs that the patient is ill. Although the person may look "normal" when you're together, you may not see the relapse that follows activity.  Many patients want to function at their best when with friends, but privately pay a price later.  Exactly.  Many people look at me like they don't believe I'm sick because they can't see it.  They often tell me that I'm boring or lazy for not wanting to continue to hang out with them or even continuing a conversation.  This is frustrating because I would love to do those things, but I know that if I do, I probably wouldn't last more than a few minutes, and I would be sick for weeks after just one night of fun. Also, it may sound strange but carrying on a conversation is really hard for me. I can listen really well when someone is talking, but responding can be difficult.  It takes so much of my energy to talk, and talking for more than a few minutes makes my lymph nodes in my neck swell more than usual.  It then becomes very painful to talk.
• It is difficult for CFIDS patients to make advance plans and plans often must be canceled at the last moment.  Because overexertion leads to relapses, previously enjoyed activities must often be altered or given up.  This places a tremendous strain on partners and friends.  Accept that you may not be able to enjoy the same activities with the patient as you used to.  Try to keep plans and expectations flexible to accommodate unpredictable symptom changes in the patient.  I'm sure many of you have experienced a time when I cancelled on you at the last minute.  I know this happens a lot, and I hate it.  I hate that people can't count on me to do what I say I will do even though I know it's not my fault.  I hate hearing the disappointment in their voice even though I know they understand and they just want to spend time with me.  This is one thing I think will take me a long time to get used to.  This is also why I often avoid making plans.  Sometimes just the thought of having to shower and get dressed in order to go out frustrates me because I know that in itself will probably make me sick to the point where I can't go out.
• Memory impairment in patients may cause them to interrupt to say what they think because if they don't, they will forget it.  If these interruptions are distracting, ask the patient to jot down notes during the conversation.  OHMYGOSH YES!!  This is one of the most annoying things that I have to deal with.  It seems like every time I open my mouth to speak I either loose my train of thought half way through the sentence and can't recall what I was talking about or I can't recall words that I am trying to say.  Just ask Nick...He finishes all of my sentences and has to remind me what we are talking about at least 5 times during our conversations.
• Avoid making well-intentioned comments such as "I know how you feel" or "I get tired often too".  Healthy people obviously experience some symptoms of CFIDS from time to time, although not as frequently and severely as patients do. These statements may be perceived as insensitive and hurtful, potentially damaging closeness and trust.  This one is also true.  Many people try to tell me things that they do when they are tired, but none of those things will help me.  This is not normal exhaustion, and I have to do things differently than "normal" people.  If I ask for advice, feel free to tell me what you think, but don't be upset if I don't follow it.  
• CFIDS is not a logical illness.  Understand that a patient may be fine to participate in an activity one minute and feel really sick the next minute.  Respect the need of the patient to prioritize, rest, and discontinue any activity at the first hint of fatigue or other symptoms.  Definitely.  This happens a lot.  I can be perfectly fine, go grocery shopping, and in the middle of getting groceries feel so sick like I'm going to collapse or faint.  Simply walking up a flight of stairs can make me go from feeling great to the point where my whole body shakes and I have to lay down. It is not fun.  I can also feel like I have a lot of energy for hanging out with friends but 5 minutes later be completely exhausted and need to go home.  Because of this, it is hard for me to answer when you ask me how I am feeling.  More than likely in that day alone I have gone back and forth from feeling ok to be up to needing to sit or lay down.
• When you are unsure about what would be helpful, ask! You are not expected to be a mind reader, and giving unwanted help or advice may cause resentment.  Don't be shy or worried that you will say something wrong.  I would rather you ask me your questions than just do something that makes it worse for me when you thought it would help me.  I will also be honest and let you know when I do need something.  When you ask me if you can do something for me, it is hard for me to think about things that I need.  It would be easier on me if you asked specifics such as "Can I do your grocery shopping" or "Can I clean something for you".

These are the main things that most people have wondered about or I think people need to understand.  I'm sure I will think of more as time goes by, but for now these are the most important.  Feel free to ask me anything, but don't be upset if it takes me a few minutes to think of an answer.  I am so grateful for the friends and family members that care so much and want to help as much as possible.  I have been very blessed.  Check back tomorrow for my list of positives and negatives!

Jeffrey R. Holland: Laborers in the Vineyard

I'm completely exhausted and not feeling great so I didn't go to church today.  I decided to watch some General Conference videos while Nick is at church, and Laborers in the Vineyard by Jeffrey R. Holland was the first one to come to my mind.  Can I just say I am in love with this talk?? It is probably my favorite conference talk of all time!  This is probably because it hits a spot that is very special to me.

All my life I never understood the parable of the Laborers in the Vineyard. For those of you who don't know what it is, watch the video at the bottom of the page first. It was so frustrating to me because I didn't think it was fair that they all got paid the same wage even though some people worked all day and some people only worked for an hour at the end of the day.  This is probably because I worked pollinating cornfields every summer since I was 14 and I absolutely HATED it.  I can honestly say I've never hated anything more than that.  I literally knew exactly how it felt to labor all day in a field.  If I went to work one day and at the end of the day I got paid the same amount as someone who only worked the last hour I would be livid.  Like throw a fit livid.  I would picture that person out with friends all day, coming to work the last hour (which is the easiest hour), and going back out with friends for the night. I would then picture myself going to work in the morning, working through the dew that makes the corn super itchy and scratchy, working through the hottest hours of the day drenched in sweat with bugs and pollen all over me, pushing through to the end when I think I can't work anymore, and finally going home to shower only to find that I was too tired to do anything but rest until it was time to go to work again.  Do you blame me for not understanding this parable?

2 years ago I took a religion class at BYU, and we talked about this parable.  The teacher made every difference in the way that I saw this parable.  He explained what times were like back then and what the people went through.  I finally understood the parable because I wasn't literally applying it to my life anymore.  I simply needed to literally apply it to times back then, find the meaning, and apply the meaning to my life now. I absolutely love this parable now, and it means so much to me. 

My teacher explained that in those times, many people would line up on the streets waiting for someone to come hire them for the day.  They did this every day, and on days that they didn't find a job they didn't have money to feed their families.  Those that were hired to work in the morning were so blessed because they had a job for the day.  They didn't have to worry about finding a job so they could have money to feed their family that night.  Those that were chosen at the last hour were probably so grateful for the chance to work even one hour of wages, let alone a whole day's wage.  They probably worried all day that they weren't going to find work, and by the last hour they had lost hope that anyone would hire them.

In these circumstances, even if I was one who started work in the morning, I would be glad that more people got to work to earn money for their families.  If they hadn't found work, I would even be tempted to give them the money that I earned so that their children didn't have to starve.  After this clicked in my brain, the meaning of the parable finally came through to me.  As members of the Lord's church, we work in His vineyard every day.  People join the church at all different stages of their lives, but we all get the same reward: all that the Father has!  Were you so excited when you realized this?!  I was ecstatic!!  Plus, I am truly blessed to have started in the "Vineyard" as a young child.  I had the comfort and help that the knowledge of the Gospel brings in the trials of life.  I had guidance and direction.  Because of this, I was able to avoid many of the sorrows of life, just as those who started work in the vineyard did when they didn't have to worry all day about whether or not they were going to feed their family that night. Those people that join the church later in life didn't have that guidance and comfort throughout life.  They were lost and had to figure things out on their own.  

Plus, when those of us who have been faithful members of the church our whole lives get to the Celestial Kingdom, we won't stand at the door and forbid those who didn't serve as long as we did to come in.  The thought of that is just ridiculous!  We will be throwing the door wide open, ready to receive anyone who is worthy to come in!  Now that thought makes me so extremely happy!  I would love if everyone could be worthy to be in the Celestial Kingdom and partake of the blessings that come with that!  Realizing this makes me want to go out and share the gospel with everyone I see! 

After finally realizing all of this, I am in love with this parable because it makes me want to be the best person I can possibly be.  It makes me want to share the gospel, stop judging others, and serve as many people as I possibly can. When I heard Jeffrey R. Holland's talk about this, I fell in love with it even more.  I hope that all of you can find the joy and light of this parable as much as I have.  Here is Elder Holland's talk for those of you who haven't heard it or want to hear it again!  I seriously watched this like 5 times today.

Don't be afraid of sharing your thoughts!  I love hearing other people's views.  We all sometimes find different ways to apply meanings to our lives, and I would love to know what you got out of the parable or the video!

First week of goals...here I go...

OK so now that I know what is going on with my body I have goals that I need to set so I can get better.  Like I mentioned before, I need people to be accountable to so I will be posting whether or not I complete my goals for each day.  Feel free to give me any tips or ideas that might help me or reprimand me for not following these goals very well.

My First goal is to set and stick to a graded exercise program.  For those that don't know what that means, it is an exercise program that starts with almost no exercise and very very gradually leads up to more.  For the first week, I am going to stretch for 5 minutes 3 times a day.  When this week is over, I will plan the next week depending on how I am doing.

Times/Days	Wednesday	Thursday	Friday	Saturday	Monday	Tuesday
1	no	yes	yes	yes
2	no	no	yes	no
3	no	yes	yes	no

My Second goal is to set and stick to a sleep schedule.  I am supposed to try to sleep at only these times no matter how tired I am.  If I find I am too tired to stay awake with this schedule then I need to plan more time for sleep.  I am more tired around 12 than I am any other time so that's when I'm going to take my nap.

Times/Days	Wednesday	Thursday	Friday	Saturday	Sunday	Monday	Tuesday
Wake 8:00	yes	8:30	yes	8:30	9:30
Nap 12:00-2:00	yes	yes	no	no
Bed 9:00	10:00	9:00	11:00	11:00

My third goal is to set and stick to a specific diet of no sugar, little gluten, and and no processed foods.  This one shouldn't be too hard since I am eating pretty healthy already.  

Foods/Days	Wednesday	Thursday	Friday	Saturday	Sunday	Monday	Tuesday
No Sugar	yes	yes	yes	yes
Little Gluten	yes	yes	yes	no
No Processed Foods	no	yes	yes	no

The first thing that I want to do is to be able to go to church again.  I often make it to Sacrament Meeting, but I crash after that and have to go home.  I think one of the problems is that our church is from 1:00 pm to 4:00 pm.  That's right during the time when I feel the worst and am the most tired during the day.  We go to a married student ward, and I'm wondering if we should switch to the family ward so that we can go to church before I get tired.  We love our ward and don't want to switch, and the switch might not make it any better anyways.  Even on days when I'm feeling great just sitting through sacrament meeting wipes me out and I still have to go home afterwards.  Any ideas that might help me with this?

Finally...a Diagnosis

As most of you know, I have been sick on and off for the past year and a half, and I always thought it was mono.  Most of the symptoms I've had are very similar to mono, and the three different doctors that I went to said it was mono.  They also told me that there was nothing that I or they could do and that I just had to wait it out until it got better within a month or so.  After a year and a half, its still here.  I ended up having to quit work and most of my classes because I was so sick.  I finally started feeling better at the end of November, and I was so sure that it was going away. I continued to rest and eat as healthy as I could.  I then decided I was well enough to start exercising. Last week I did 30 minutes of relaxing yoga on Tuesday and Thursday. On Friday, my body just fell apart.  Every muscle in my body ached as if I had run a marathon, my lymph nodes everywhere in my body were swollen more than usual, and i was completely exhausted.  I just felt so sick!  I went to the doctor early this week to make sure that my spleen wasn't swollen since I had a lot of pain there, and she told me that mono wouldn't be flare as much as it was with just a little bit of exercise.  She did some tests and diagnosed me with Chronic Fatigue Syndrome.

I wanted a second opinion so I went to another doctor that I researched that has a lot of experience with chronic fatigue syndrome, and he agreed that's what it was.  For those of you who don't know what CFS is, I'm just going to copy and paste from The Centers for Disease Control and Prevention because I'm tired and my brain just doesn't want to work right now.

  "Chronic Fatigue Syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity.  Symptoms affect several body systems which can result in reduced participation in daily activities.

The fatigue of CFS is accompanied by characteristic illness symptoms lasting at least 6 months.  These symptoms include increased extreme exhaustion and sickness following physical activity or mental exertion, insomnia, fevers,  memory/concentration problems, brain fog, muscle and joint pain, swollen lymph nodes and spleen, sore throat, fainting, dizziness, weakness, allergies, sensitivities to odors, chills and night sweats, visual and aural disturbances, and depression or anxiety.

While symptoms vary from person to person in number, type, and severity, all CFS patients are limited in what they can do to some degree.  CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, and similar chronic conditions.

CFS often affects patients in cycles: patients will have periods of illness (can last for years) followed by periods of relative well-being.  For some patients, symptoms may diminish or even go into complete remission; however, they often recur at a later point in time.  This pattern of remission and relapse makes CFS especially hard for patients to manage.  Patients who are in remission may be tempted to overdo activities when they're feeling better, but this overexertion may actually contribute to a relapse.

The percentage of CFS patients who recover is unknown, but there is some evidence to indicate that patients benefit when accompanying conditions are identified and treated and when symptoms are managed.  High quality health care is important" (Centers for Disease Control and Prevention).

There's not much that can be done for treating it, but there are a few things that they can do.  The main treatments are controlling symptoms, followng a GEP (graded exercise program), sticking to a strict sleep schedule and diet, changing daily activities, and using cognitive behavioral therapy to learn how to live with the fatigue and other symptoms in everyday life.

I am doing alright, and I have lots of people that are eager to help in any way that they can.  My visiting teachers, home teachers, neighbors, friends, and family have all helped so much with anything that we need.  We have been very blessed, and we are so grateful to everyone for their prayers and help.  One thing I've learned is that I need someone to be accountable to with my treatment plans so that I will follow them well.  For this reason I will be posting my treatment plans on here.  I know especially when I'm so exhausted that I don't like worrying about exercising, eating, sleeping on schedule, and whatever else. Feel free to get on me if I'm not following them!

I mostly feel so relieved that we have a definitive diagnosis!  I was so confused why all of a sudden I was allergic to gluten, needed glasses, had hearing problems, became very anxious, and for the life of me could not make my mind focus on my classes.  It feels great to have a reason why all those things have happened.  Even though this is worse than mono, I'm glad I finally know what it is.

Also, I am continuing my education until I graduate.  I have a few online classes that are super easy and I can work on them when my mind decides to work, and other than that I only have 4 or 5 classes left until I graduate.  I plan on taking one class a semester so I don't overdo anything.  I may graduate a few years late, but I will graduate!

I'm also starting this blog to keep myself busy so I don't keep watching Netflix all day.  After watching it every day for a year and a half its extremely boring.  Pretty sure I have every episode of the office completely memorized.  Test me, I dare you :)