Explain CFS to friends and family with this "letter'

Discussion in 'Fibromyalgia Main Forum' started by lenasvn, Aug 21, 2006.

  1. lenasvn

    lenasvn New Member


    Symptoms - How they affect one's life

    The following may help to explain why we have difficulty socializing, continuing to work or attending school.

    As previously mentioned, our symptoms wax and wane. For some, their illness may improve to the point where they are able to return to a acceptable percentage of recovery, albeit with caution, carefully monitoring and balancing their activities with rest. While others may plateau at a minimal level of their prior activity, alternating with relapses, and a few may gradually deteriorate over time.


    The fatigue that individuals with M.E./CFS experience is unlike the fatigue healthy individuals experience after working long hours, who can regenerate their energy after a nights rest.

    The fatigue we experience does not disappear after a nights sleep, nor does bed rest relieve the fatigue. A simple task, such as washing our hair, can exhaust us. Attending a doctor's appointment may cause some M.E./CFS patients to be bedridden for days. Our legs and arms feel 'heavy', making walking exhausting.

    If you are a jogger, remember how you feel at the end of your run... that is how we feel all day, everyday. We may have periods of improvement, making this confusing to anyone observing us...but many are unable to sustain this improved level of activity, making it very frustrating for us and our families.

    Sensory over-stimulation

    An increased sensitivity to sound and lights may require some M.E./CFS patients to keep the television sound and household lighting turned very low. Sunshine may be very painful to our eyes.

    To attend a social function where there is music and multiple background conversations, we can become very disorientated and unable to understand or sort out words in a conversation. In a workplace or school, the lighting system, phones ringing, movement of people walking around us (visual motion) can leave us confused and disorientated.

    When we have experienced an overload of sensory stimulation, we become exhausted, and it may necessary to be in a darkened, quiet room for several hours.


    Relapses of the illness

    As each individual who has M.E./CFS has their own unique experience with the illness and may have their own specific signals of a impending relapse.

    These 'signals' can be a sign of an impending relapse and our activity must be stopped immediately in an attempt to ward off the relapse. A few of the signals are increased confusion, increased sensitivity to sound and lights, a hand or foot becoming 'ice' cold to touch, increased hyperness, increased mood swings or increased irritability.

    This is a constant struggle for us to try and observe as there may not be any recognizable specific pattern to the symptoms. Because we were healthy, contributing members of society, it is very difficult for us to accept that we can no longer maintain our previous levels of energy. There are many times when we deny the warning signals of a relapse, resulting in a prolonged period of time to recover and restoration of our energy.

    There are times when family and friends can observe signs of an impending relapse before we recognize it. Frequently, I have heard that a family or friend has observed our pallor (pale skin tones) just prior to a relapse, and are able to cautious us that we need to rest.

    Because of the unpredictability of our relapses, the planning of, and attending social functions, can be very stressful for those who have M.E./CFS. We experience frustration and disappointment, when at the last minute, we have to cancel our plans.


    Cognitive difficulties

    Short term memory loss and difficulties with concentration severely impedes our ability to function in our lives.

    The simple task of writing a grocery list may take several attempts to complete. Verbal and written instructions can be very difficult to follow resulting in frequent mistakes and uncompleted tasks.

    The sorting of conversation from background noise also may be difficult. If someone is speaking in a rapid speech pattern to us, we may have difficulty in understanding what is being spoken as our brains can be sluggish in processing the information. In addition, having to complete a task in a rushed specific time frame can be very difficult, if not impossible, again, due to the difficulty in processing information rapidly.

    Difficulty with mathematics makes handling our finances very difficult.

    Spatial disorientation means that we may frequently misjudge the distance to a table top, resulting in many items landing on the floor, or being unable to use familiar kitchen appliances.

    During a conversation, we may have difficulty remembering familiar words or names, or substituting words starting with the same first letter, such as substituting 'silver' with 'shampoo'.

    Tasks requiring sequencing is also difficult for us. At times, to follow the instructions of a simple familiar cooking recipe may be impossible.

    If we are not giving an emotional response that you would expect or want, it may that our brain is being sluggish in sorting out your information resulting in our inability to express ourselves emotionally on the spur of the moment. Please be patient with us.


    We look well

    As with all invisible illnesses, when you see us out in public, you may comment that "we look well". However, what you may not realize, is that after we return home, we may be bedridden for days, and that it has taken every ounce of our strength to be in public. Our muscle strength may be weakening and we may be struggling to follow and understand your conversation.

    Weakened muscles - difficulty with stationary standing

    Standing in line at a store is very difficult and impossible for many. We need help with shopping for groceries, clothing and gifts, etc. If you are talking with us, please offer to sit down and talk to us rather than have us stationary stand, which for some, could result in a relapse.

    The cause of this difficulty is being investigated and research studies are suggesting that the cause of the difficulty in standing upright, or orthostatic intolerance, may be due to a drop in blood pressure (Rowe and Calkins, 1998), and the drop in blood pressure may be caused by having a low blood volume (Streeten and Bell), or from our having excessive venous pooling in the extremities (Stewart and Bell, 1998).

    It is not uncommon for us to faint if we have been standing for a long length of time. To help avoid this, do not stationary stand but keep 'shuffling' while standing in line at the check-out counter, or talking with someone. There are times when even opening a refrigerator door can be a difficult task.


    Conserving energy

    Many of us have to decide where we are going to spend our energy each day, and when we have spent our allotment for that day, we will need to rest. This requires us to make difficult choices each day. If we do the laundry, then we may not have the energy to prepare the evening meal.

    As our friend or family member, no doubt before we became ill, you could count on us being able to go out on the spur of the moment for a coffee or grab a bit to eat in a restaurant. But now we require advance notice in order to be able to rest prior to a social event, and even then we may not be able to join you.

    Please keep asking us to join you, as we want to, but just may not be able to do it at this time. We want and need to be with our friends and family.

    Feelings of anger, frustration and irritability

    There is a myriad of reasons why these feelings can occur, but in a M.E./CFS sufferer, one of the reasons may be that if we are asked to sort out too much information quickly, or asked to do more than we are physically capable of and this can lead to frustration and anger. In addition, if we are experiencing an overload of sensory stimulation (loud sounds, bright lights and visual motion) this can make us irritable.

    Please be patient with us, as it may be the symptoms of the illness that is making us irritable.

    The above symptoms, make day-to-day living a challenge. But to the credit of those experiencing M.E./CFS, they remain optimistic and believe that researchers will establish effective treatments, and discover a cure(s) for M.E./CFS. In the meantime, they wisely re-adjust their life style and expectations.


  2. barbinindiana

    barbinindiana New Member

    Thank you so much for posting this very good letter.

    If I ever get my printer working again, I want to print this out.

    I know people who need to read this.

  3. lenasvn

    lenasvn New Member

  4. lenasvn

    lenasvn New Member

  5. tracii

    tracii New Member

    I've had NO luck with trying to educate my family. If my hubby FINALLY picks up the thingy for the printer I'll be printed this out soon!

    Now, getting them to actually read it & acknowledge the truth - baby steps, baby steps...
  6. kaymac

    kaymac New Member

    Just a perfect letter to send to a once dear friend of mine. Putting your own words onto a letter to explain is just difficult. This also works great as a reminder to my own family who forgets sometimes just what a struggle it really is (this DD). Thanks for posting!

  7. Redwillow

    Redwillow New Member

    Thank you for this wonderful letter. I saved it to my personal files as I may use it sometime. I wish that I could explain things like this when someone asks me "what is your condition like" but my brain always goes blank.
    hugs Marion
  8. mezombie

    mezombie Member

    Excellent letter!

    I can't spend much time in front of a computer screen, but I printed it out and will make copies to send.
  9. Empower

    Empower New Member

    Thank you soooooo much!

    I am sending this off to my friends and family who do NOT have a clue!
  10. 1sweetie

    1sweetie New Member

  11. Fredericka

    Fredericka New Member

    And BUMP so others can view it. Great site, good letter.

    Now if we can get our relatives to read it without their eyes glazing over....
  12. aenimus

    aenimus New Member

    I am printing this off, it will go straight to the photocopier and then to my resource file. thank-you!