Thursday, April 30, 2009

Measuring Improvement

I'm laying here listening to my ipod feeling grateful for things like beautiful music, a comfortable bed, my kitty, and my laptop which allows me to connect with others in the blogging world. Sometimes when I'm in a dark place I think of those of you whose blogs I read and who I feel a connection to and I feel a sense of comfort.

I'm still crashing. I woke up yesterday at 4 am. At 6:30 I took an Ativan to help me get back to sleep. It worked but it wasn't a good sleep.

I have to remind myself that, overall, I'm doing better than I was last year. The doctor who diagnosed me gave me such wise advice when he said you can't measure improvement in days or weeks but you have to measure it in months. If I think of it that way I don't feel as discouraged when I have setbacks like this week.

It's time to get my blood drawn again to make sure the Valcyte isn't doing measurable damage but there is no way I'll make it out of the house today. I don't have it in me to fight the dizziness in the car, the anxiety over whether or not I'll faint, etc...The dizziness is pretty much gone but I don't want to push it. I've noticed that while watching TV when the camera pans away I feel a slight sense of vertigo. Hopefully that won't increase. Sometimes I have to close my eyes. I don't watch too much tv anymore since I learned it can take a lot of brain energy to process the images.

This past Monday there was a meeting with the CDC regarding chronic fatigue syndrome. The CDC has been absolutely unethical in their dealings with this illness. They diverted money that was supposed to be used for CFS research into other projects. It's a long discouraging story that needs to be told. I don't know anything about the history but it can be found in Hillary Johnson's book "Osler's Web" and also in Dorothy Wall's "Encounters With the Invisible." Anyway, people with CFS were allowed to phone in during the meeting. Hillary Johnson provides a great summery in her blog: http://oslersweb.com/sb/page.php?ID=74147&post=594304

It's a crime what they are getting away with. I plan on becoming politically active regarding this illness once I finish with Valcyte treatment.

Tuesday, April 28, 2009

Crashing Badly

Ugh. If I had more energy I'd be feeling really frustrated. I am in a bad crash. The past week has had its share of stressors both good and worrisome. It's a drag having an illness or disease (I don't know what to call it anymore) where good stress can cause a crash but there you have it.

I saw my dad and LuAnn on Tuesday for a couple hours. It was a short visit that tired me out but I was so glad to see them. It has been a year since I last saw them. They went through the healthcare hell ringer last summer which prompted them to move out of state and leading to the diagnosis that my dad's prostate cancer had returned (he also has chronic lymphatic leukemia). LuAnn has rheumatoid arthritis which is managed with medications but it still gets to her.

Thursday there was a home visit from the vet for Katie which always stresses me out because she has chronic renal failure but is doing well considering. The vet had to sedate her because she is so feisty with strangers. Friday she was barely moving, not eating or drinking which was very worrisome. She pulled out of it and is back to her cute self.

Matt was here from Thursday to today. He is really a great guy and it was great to see him as well.

So it's been a week of stressors. Two of them (the visits) were expected and I kept my plan of pacing. The only thing is it didn't work. I can't figure out what went wrong unless because of the Valcyte stress any little stress right now just puts my body into crash mode. I think too that my adrenal glands might need some extra helps so I boosted my cortef dose from 5mg to 7.5 mg.

Most times I feel like I'm shooting in the dark with this illness. I really want to avoid crashes because for me it means becoming bedbound until I come out of them. Even when I come out of the crash I can't do much. When I'm in one it reminds me of how grateful I feel for what little bit of functioning I do have.

This swine flu thing is a bit disconcerting. Normally I'd let this sort of story pass me by but with my immune system dysregulated and Valcyte lowering my immune system I'm a little worried. All it takes is to be in the wrong place at the wrong time. I really hope people take heed to the warnings and stay home if they feel at all ill.

I'm over this whole Valcyte thing. I've come to the conclusion that it probably isn't going to help very much. I'm glad I did it just because it had been recommended to me by various doctors. I'll stick it out for a total of five months unless I start having consistent improvement after four months.

I'm ready to get on with my life and repairing the damage that Valcyte has caused.

Sunday, April 19, 2009

Three Month Valcyte Update

These past three months have simultaneously gone by quickly and slowly. I have no idea if I'll be a responder. I had hoped to see some sort of consistent improvements by now but it seems the most that doctors really know about Valcyte is that people's' response varies and one can't make any assumptions based on people's response. Some people have few problems tolerating Valcyte and have had good results while others have a horrible time and don't respond and others have a horrible time and good response, etc...

I have developed a new symptom which is a feeling of weakness in my muscles, especially my legs. I've had a few days of rather intense muscle pain also as well as some (what feels like) tendon pain in my hands and my right foot.

I backed of the Amantadine today as well as the methylation protocol supplements. I'd like to back off the Valcyte as well but I read through Roche's information today and it said not to stop Valcyte because the virus (referring to CMV which I don't have but I assume it applies to HHV 6 and EBV as well) can return quickly if the drug is stopped.

As far as improvements I've had some in cognitive functioning and mood but not too much in terms of physical functioning although this is a bad day to rationally evaluate that because of the bad weakness and muscle pain.

My doctor's office wrote back and they want me to stay on it for the full six months.

Wednesday, April 15, 2009

Kindness...

I wanted to thank everyone for their comments and for visiting my blog. It is moving to me to feel a part of something.

I found this poem:

Kindness, Naomi Shihab Nye, Words Under the Words, Eighth Mountain Press, 1995

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth
What you held in your hand,
3
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.
Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and purchase bread,
only kindness that raises its head
from the crowd of the world to say
It is I you have been looking for,
and then goes with you everywhere
like a shadow or a friend.

Twists and Turns

I've been thinking about acceptance a lot. It's key to finding peace in the midst of all this illness throws at us. I believe that once I truly accept this illness then I'll be able to make good choices about my life, my health, and my attitude.

I have about the same amount of power over this illness as I do sitting in front of an ocean wave willing it to stop from crashing on the beach. I do have choices though. One of those involves how I handle my internal life. To what extent I'll be able to recover any external life remains unknown. Right now the only thing I have control over is how I deal with my self.

I've been very self critical with lots of time to examine my life. Unfortunately the depression which can go hand in hand with an illness like this causes the reflections on my life to focus on everything I've done wrong, every single thing and every single person. While useful it becomes self destructive when taken to the extent that I have where I have felt overwhelmed with regret and a longing for the chance to do it over again. The self pity, the derogatory remarks I make about myself, the judgments I have about myself-all these negative attitudes have to stop. It takes energy to have thoughts like this.

To that end I decided to begin Vipassana Meditation this Monday. For Christmas two years ago I was given a meditation CD done by a man named Jack Kornfield. He wrote a book that I read years ago and really liked called A Path With Heart. I started listening to the CD during my rest breaks. I figure since I need to rest I might as well start doing a simple meditation that involves nothing more than simple focusing on the breath (much easier said than done).

The past two days I haven't woken up with that horrible sense of doom and depression. Last night I thought I would write a post today about my mood lifting. I checked my email in the morning and received one which threw me.

I should know by now that one thing this illness promises is to knock you for a loop the first few years. It's like a cruel trickster figure.

The email was from someone I met who also has this illness including chronic lyme. She informed me that the head doctor of the medical group that I see for my CFIDS was having Dr. Montoya speak to them about Valcyte. Apparently they are not seeing the same results that Montoya got. The medical director proceed to tell my friend that not only are they not seeing the results but they are having doubts about using it. I don't think it bodes well that Montoya has yet to publish his results. I know there is a lot of data to be looked at but....

Anyway, I was upset by the fact that my doctor has doubts about this very toxic drug I'm taking. And once again faced with-is this going to be it for me? Is this as far as I'll get? There are people who are able to do much less than me. I'm housebound and sometimes bedbound but I can do chores around the house and I can go on outings more sometimes, not very often, for as long as 4 hours. I'm grateful every day for what I can do. It's just that it's not much and my discouragement is always tempered with the hope that I'll regain more functioning.

I've spent the better part of the day trying to sort through my feelings. I did email my doctor and asked him about what I heard. I don't expect any sort of answer soon simply because it isn't an urgent medical matter.

What my reaction ultimately told me is that I have a long ways to go before I truly accept this.

Katie, my kitty, has been an angel. Early Monday morning I felt a little nose pressed up against mine so I opened my eyes. There was Katie, sound asleep with her nose up against mine. She had curled herself up right near my head. Her eyes were squeezed shut. Today as I was crying she came over and laid next to me and put her head on my shoulder. Its as if she knew how much I needed that sense of comfort.

In the next month I'll be making the decision about whether or not to continue with Valcyte.

I think the treatment that consistently shows the most promising results is pacing.

Friday, April 10, 2009

Valcyte Update and Stuff

This morning I woke up from a dream in which I was actively part of a community. I felt useful, a part of something, and I was busy! I was sorry to wake up to my current reality. I felt really sad that my dream wasn't my reality. It felt great to feel useful and around people. I knew that there was potential for a tearful and depressing day ahead so I kept distracting myself by reading, thought stopping, and other things. I fought to stay out of that depressed place.

I've been on Valcyte for almost 11 weeks now. This week I have felt much less able to do much of anything. I've had migraines or maybe they are cluster headaches since Tuesday. They start in the afternoon. I was in pretty bad pain Tuesday evening and remembered that my doctor had prescribed lidocaine nasal spray and ketamine nasal spray back when I started Valcyte. They work. They don't take the pain away but I'm probably not using them correctly. I'm hesitant to use ketamine because it has been used recreationally although it's original purpose was an anesthetic for animals. I watched some youtube vidoes of people who had done a lot of ketamine and it wasn't something I wanted to experience. Anyway, I'm grateful they work.

I've just felt very unwell lately with some muscle aches and weakness and increased brain fog. Today I've spent mostly in bed. I'm trying to sort out whether or not I'm crashing because of overdoing it or whether I have some sort of bug or if the Amantadine (an antiviral) is causing some sort of die off or if its because of the Valcyte or what. I still have this illusion that if I can figure out what caused this than I have some control over it.

I think I've been overdoing it and caught a bug.

I've had a lot of trouble sleeping this week. Both Valcyte and Amantadine can cause insomnia (in addition to the CFS). I have to figure out how I can get more sleep.

It's still too soon to know whether or not Valcyte will work but I've been finding myself thinking that if I don't have consistent improvement by 4 months I'm going to make a decision whether or not to continue Valcyte. My doctor said people tend to have an increase in symptoms the first three to four months on Valcyte. I think at this point taking things 30 days at a time feels right.

I'm trying to find a hobby or something but find myself at a loss. I need to build a new life for myself. I still trust that will happen. It's strange adjusting to having my energy levels cut off-similar to an amputation just not visible. I think that getting use to living with an illness like this is similar to adjusting to becoming paralyzed or losing a limb. Only in this case it's losing the ability to create energy in the body.

Thursday, April 9, 2009

The Importance of Pacing

I was reading through Sara Myhills free book on ME/CFS. It's very good and can be accessed at her site http://www.drmyhill.co.uk.

She writes about the mitochondria dysfunction in this illness. I found a section about pacing and thought I would post it below. Knowing that overdoing it causes further damage to the mitochondria takes me out of denial.

___________________________________________________________


Rest and Pacing – Drive your car kindly! It lasts much longer!

“Thou shalt not be thine own worst enemy, but thine own best friend.”

Rest is the single most important factor in allowing chronic fatigue syndrome sufferers (CFSs) to get better. An invariable feature of the history is that exercise (mental, physical or emotional) makes the symptoms worse.

Indeed this distinguishes CFS from depression -

• Exercise tends to improve people who are simply depressed.

• In CFS the desire is there but the performance lacking.

However, all CFSs tend to push themselves to their particular limit every day and therefore do not give themselves a chance to get better. This means they have one day doing as much as possible, then three days to recover.

Whilst you are on this roller coaster ride of activity and dives, you cannot hope to improve overall. Energy has to be carefully rationed so that every day is about the same. This is the most difficult aspect of treating CFS, because this is the very personality that makes people get CFS in the first place.

We now know why CFSs get delayed fatigue – it is because when they use up energy (ATP) faster than they can make it, there is a build up of ADP. Some is shunted into AMP, which is only recycled very slowly, if at all. [Note: Dr. Myhill’s recent research suggests that in CFS the mitochondria's normal ability to produce adenosine triphosphate (ATP) and recycle adenosine diphosphate (ADP) or adenosine monophosphate (AMP) to replenish the supply is compromised.]

Cells have to make brand new de novo ATP from D-ribose, but this only happens very slowly, 1 to 4 days. In the meantime, cells can get a small amount of ATP directly from glucose via anaerobic metabolism, but this produces lactic acid, which causes many of the muscle symptoms.

Most CFSs compare themselves to what they were like before their illness began. This is hopeless. It is vital to work out exactly how much you can or can't do in a day - and then do less.

Imagine that a normal healthy person has £1,000 worth of energy to spend in a day.

• The CFSs only have £100.

• What is more, this has to be spread out throughout the day in such a way that they have £20 "change" at the end. This will then allow recovery to occur.

• Furthermore, you are only allowed to spend a few pounds in one session – then rest.

If you start to get symptoms, then you are overdoing things. Often this means you have initially to do less – but with careful pacing you will end up doing more!

I also like all my CFSs to have a sleep in the day, even on a good day. Homo sapiens evolved in hot climates where it is normal to have a siesta in the afternoon. Most people experience an energy dip after lunch. Young babies and older people return to this more normal sleep pattern and ill people should do the same. An afternoon sleep is normal! I do!

Resting In the Day

By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking, child minding, noise and TV. All the above count as activities which have to be carefully rationed through the day.

• When you rest, lie horizontal because this reduces the work of the heart (it is much harder work pushing blood round a vertical body, up hill and down dale, than when horizontal and everything is on the flat). Interestingly caffeine helps the body scavenge AMP, so small amounts in green tea, coffee or dark chocolate can be very helpful.

• The second point is to have a proper rest, when you actually go to bed, regularly in the day, EVEN ON A DAY WHEN YOU FEEL WELL. The fatigue in CFS is delayed. If you push yourself one day, expect to "pay" for it 12 to 36 hours later. So just because you feel well one day, don't overdo things or you will be worse off the next.

• Thirdly, do things in short bursts. You will be more efficient if you do things for 10 to 40 minutes (whatever your window of time is), then rest for the same length of time. I had one patient who could only walk 30 meters, but by walking 15 meters and resting, then going on again, she got up to walking a mile a day!

• Fourthly, vary your activity. This applies to the brain as well as the body – listening to the radio or music uses a different part of the brain than watching TV. Washing up dishes (sitting on a high stool, please) uses different muscles than walking.

As You Recover

The first step is to reduce the amount of physical and mental work each day until all days are about the same.

At the same time you will be putting in place all the necessary interventions to allow recovery [see sections in Diagnosing and Treating Chronic Fatigue Syndrome on]

• Nutritional supplements

• Stoneage diet

• Sleep, etc.

Get the regime tight until you get to a stage when you feel absolutely fine doing absolutely nothing!

The level of activity is then very slowly increased each day on the proviso that you continue to feel well.

The key here is to vary activity. Different parts of the brain and body have to be exercised. One of the most active areas of the cortex is that which is concerned with vision. Processing information from a television, for example, requires much more activity than listening to music. Television needs to be rationed.

Similarly, physical exercise should be done using many different muscle groups and initially should be limited to simple stretching exercises without weights.

The level of physical and mental exercise is very gradually increased. It may well take several months before significant changes are seen. To adjust the level of activity to what is appropriate you have to judge things by the next day. If there is delayed fatigue then you have overdone it. There is a very fine “window” between too much and too little. Straying either way makes CFS worse!

One of my patients… has developed a useful technique for rest. Every activity is scored as to whether it is:

• Energy giving (e.g., sleep, lying in bed in a darkened room, meditation),

• Energy taking (e.g., dressing, walking, talking, cooking, cleaning, etc.)

• Or energy neutral (easy reading, easy TV, having a massage, etc.).

Each day is scored in terms of time spent doing each activity and balanced out so energy input equals energy output. Everybody has their own balance. But one can quickly see if too much has been done on any one day, in which case a balancing is necessary. Doing it like this, on a chart, takes the guilt out of resting. It simply becomes a necessity like eating or drinking.

I can recommend Calibre - The Audio Library - a registered charity providing recordings of books to the blind and print disabled (CFS patients qualify on many scores!). The service is free, the voice on the end of the phone extremely friendly. Contact Calibre Library on: 01296 432 339. [In the U.S. a similar free service is The National Library Service for the Blind and Physically Handicapped, which offers talking books/magazines and talking book players through a cooperative network of local libraries.]

Once you get to the stage when you have good levels of activity and feel fine, then, and only then, dare you relax the regime.

This of course is a council of perfection - actually nobody does it this way because life has a nasty habit of getting in the way. There is usually a trade off between how you feel and how much you can do. But the business of feeling ill is a disease amplifying process - it can actually make you worse as cells are damaged - so do work hard at pacing.

Work and Pacing

There is a whole spectrum of CFSs - from those professional athletes who cannot do their marathons in less than 2 hours 12 minutes - to those who are bed ridden. Some CFSs can manage full time work, but very often are operating "on adrenaline" and crash when they give it up.

This crash can last several weeks or months. Many can do some part time work, in which case late afternoon work is the best. Don't try to change the job you are in; never resign or you will lose valuable rights. I am happy to give sick notes, write to companies/bosses, do letters for early retirement, and fill in disability living allowance forms, etc. for my patients. I never used to charge for these letters, but because there is so much paper work now, I make a charge reflecting admin/time costs.

The mitochondrial function test results are very useful to include in these letters, because these give us an objective measure of fatigue. [See Dr. Myhill’s recent article with Drs. John McLaren-Howard and Norman Booth - “Chronic Fatigue Syndrome and Mitochrondrial Dysfunction” - introducing “a biochemical test which measures energy supply to body cells and therefore fatigue levels in people with Chronic Fatigues Syndrome/Myalgic Encephalomyelitis (CFS/ME).”]

If you work to your limit, then you should do very little outside work. Spend the evenings and weekends resting.

Get Organized

The people who get CFS are those who "burn the candle at both ends." They hold down a demanding job, care for a family and are often active sportsmen/women. I see many top athletes with CFS - professional footballers, cyclists and swimmers, decathletes, many county badminton, hockey, cricket and squash players, and several quality marathon runners. These people are the very ones who find it difficult to ask favors of others.

• Ask other people to do things.

• Stop being house-proud.

• Get a cleaner and dish washer.

• Simplify your life.

• Accept offers of "meals on wheels" from others.

• Standardize shopping lists so you don't need to think each time.

• Arrange for as much food to be delivered as possible; e.g., have a standing order at the green grocer for fruit and vegetables, with the fishmonger, with the butcher, etc. Many city areas have organic food delivery.

• Have standard menus every week so you don't need to think about what to eat.

• Choose foods requiring minimal preparation.

• Use the internet to order from supermarkets [e.g., www.tesco.com] so that foods are delivered to the house directly - a weekly standard “shopping basket” takes energy to set up but takes the mental and physical effort out of shopping thereafter.

• Take advantage of a washing machine and drier.

• Give up ironing - a nonsensical, energy sapping waste of time and energy. Ironing came into fashion to kill nits and fleas in the seams of clothes and had a purpose once! I don't iron, but then I always was a scruff!

• Do things by the clock. We are creatures of habit and the physical body likes things to happen on a regular basis - you ask any farmer who keeps animals - they thrive on routine. Sleep and eat at regular times and pace activities so you do about the same every day and during the same time slots. I know that life has a habit of getting in the way of this ideal, but as a general principle, stick to it.

I always think life is all about going from one crisis to the next. If every bit of your energy is taken up every day, then you don’t have any left in reserve for the crises. This is another good reason not to constantly push yourself to your limit.

The Ten Commandments for Reducing Stress

1. Thou shalt not be perfect or try to be.

2. Thou shalt not try to be all things to all people.

3. Thou shalt leave things undone that ought to be done.

4. Thou shalt not spread thyself too thin.

5. Thou shalt learn to say "NO."

6. Thou shalt schedule time for thyself, and for thy supporting network.

7. Thou shalt switch off and do nothing regularly.

8. Thou shalt be boring, untidy, inelegant and unattractive at times.

9. Thou shalt not even feel guilty.

10. Thou shalt not be thine own worst enemy, but thine own best friend.
____
* Dr. Sarah Myhill, MD, is a UK-based fatigue specialist focused on nutrition and preventive medicine. This information is reproduced with kind permission from her educational website (DrMyhill.co.uk)® Sarah Myhill Limited, Registered in England and Wales: Reg. No. 4545198. It is excerpted from her free 179-page online book, updated Jan 2009 - Diagnosing and Treating Chronic Fatigue Syndrome.

Friday, April 3, 2009

More

From cfids.org:

This was written by a prominent CFIDS specialist MD who practices in Salt Lake City, UT:

From day one of a CFS diagnosis, it’s bad
news. People around an individual with CFS
may not understand the illness, how it feels or
what to do about it.

At first a CFS patient might
receive attention, but as months go by without the kind of
physical improvement people expect, those who once
offered support may disappear. The ongoing physical limitations
are accompanied by ongoing emotional trials.

Anacute illness is definitely traumatic, but most can muster a
good fight while actively seeking a diagnosis and some type
of rescue care. It’s living with the “C” in CFS that really
gets old. (Editor’s note: see “Trauma & CFS,” page 10.)

CFS can be especially punishing compared to other
chronic illness. Because the symptoms are difficult to
measure or prove clinically, they may be met with doubt
or disapproval by those whose support is needed most.

Because CFS follows a relapsing and remitting pattern, in
addition to feeling limited most of the time, patients can’t
predict when they’ll feel even moderately better or worse.

Because of the characteristic postexertional symptoms of
CFS, an honest effort to function or simply have a little fun
is often punished mercilessly by a relapse of pain, fatigue
and brain fog.

There are innumerable personal losses in the
present and potential losses projected far into the future.
Focusing on the loss can lead to a downward spiral that
can impact life in very tangible ways.

In order to thrive, anyone living with CFS must repeatedly
rejuvenate the will to live and to find joy in living,
even while chronically ill. It can be done! No one and no
disease can take away the freedom to choose how to
respond to a difficult situation.

Tips for Dealing with People with CFIDS

This is from the CFIDS Assocation of America's website:


How to Help: General Suggestions

The keys to helping a person with CFIDS are education, communication and emotional support. If you don't know how to be supportive, ask the PWC for suggestions.

Educate yourself about CFIDS. Stay informed by reading the CFIDS Chronicle, the CFIDS Association's quarterly publication with articles about research, treatment and coping.

Validate and acknowledge the seriousness of the illness. Be as patient, caring and understanding as you can be.

Attend medical appointments with the PWC to show support, take notes, offer your observations and verify reports if necessary.

Offer to help in specific ways, e.g., running errands, balancing checkbooks, managing finances, helping to fill out disability forms, tracking health insurance claims.

Enjoy activities together, modifying them as necessary, and talk about fun times you've enjoyed together. Keep plans and expectations flexible to accommodate unpredictable symptom changes.

Avoid comparing the way things used to be to today.

Create a "new normal," modifying goals and plans as necessary.

Keep lines of communication open. Be willing to listen, but let the PWC know when you are overloaded and need a break. Don't let CFIDS-related anger control your discussions. Sick people may overreact, lose track of conversations or have difficulty expressing their thoughts. Memory impairment may cause PWCs to interrupt ("If I don't say it right now, I'll forget it"). If the interruptions are frequent or distracting, suggest that they jot down notes during the conversation.

Avoid making well-intentioned comments that may be perceived as insensitive and hurtful, potentially damaging closeness and trust. Examples:

What do you expect me to do about it?
You'll just have to live with it.
If you just _________, you'll get better.
Pull yourself up by your bootstraps.
You can beat this thing if you really want to.
I have a lot of the same symptoms as you do.


Healthy people do experience some CFIDS symptoms from time to time, although not as frequently or severely as PWCs. Statements such as, "I get tired, too," and "You're not the only one who's forgetful" may cause persons with CFIDS to feel that they and their illness are not being taken seriously. Instead, try to word your comments constructively. Examples of helpful responses are:

I'm sorry you're feeling so badly.
I wish I could make it better for you.
I know this is difficult for you.
You're handling this illness so well, but I know it really gets you down sometimes.
What can I do to help?


Be cautious about giving advice. The PWC needs empathy and validation but may reject well-intended but unwanted advice or attempts at "fixing." Often he or she just wants you to listen.

Remember: This illness isn't logical. Respect the need to prioritize, to rest, to discontinue any activity at the first hint of fatigue. The PWC may need to change plans at the last minute or refuse to do certain things which may produce fatigue or relapse.

Contribute to the battle to conquer CFIDS by making a tax-deductible donation in honor of your loved one.



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 CFIDS 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.

Towanda! A Rant...

I woke up this morning at a decent time-9:00 instead of the usual 11 or 11:30. This is the third time this has happened this week.

I woke up feeling okay and better than okay emotionally. I actually felt good. And I'm still on Valcyte.

I'm also angry which I think is a good thing because it means I have the energy for it. I'm angry about the various people that have slowly dropped out of my life. I'm quite aware that I haven't been the happiest person lately. I think that's why certain people have fallen by the wayside. But the Priest?

I met with the Priest over a month ago. I asked him if we could meet again. He hesitated and then said why don't you email me (I also asked for a book recommendation) and I'll recommend a book and we'll go from there. Well I emailed him but haven't heard anything back. I keep checking my email in the hopes of some response but nothing.

More than a few months ago I was told a friend wanted to get together. During the move I saw this person and said let's get together. The look on this person's face told me everything I wanted to know. Needless to say I have yet to see or hear word one from this person since I got ill.

And there are a couple others who have just stopped communications. I haven't been the best at returning emails. Sometimes it's like that with this illness. There are times when all I can do is manage the day or maybe post an entry in this blog.

So I guess I'm at that point that all of us with this illness go through. Another layer of the old life dies. It's a harsh reality. There are some people who are not strong enough to be around someone with an illness such as this. These are the people that don't have the gumption to face some of life's realities. They need people around them to be happy. Or at least have the decency to ACT happy.

So yes. I've been grieving, I've been depressed. I'd be crazy not to be going through this process. But I'm doing something about it. I'm not sitting by passively being a victim in all this. I take whatever action I can take. When I'm feeling really bad sometimes I write about it, or I'll look at beautiful photographs on the computer, or listen to music, or read. Sometimes I curl up and cuddle with my kitty. Sometimes I wallow in self pity.

I'm tired of making excuses for why people don't call or email or stay in contact. I'm done making excuses. What if this happened to you? God forbid. What if you suddenly found yourself in my situation? What if you found that you couldn't pursue your blossoming dream career? If that weren't bad enough then you find that you can't leave the house because you are so dizzy? Grocery shopping? Forget it. Getting a haircut? Nope. Then you realize it's not a temporary thing? And then you're friends stop contacting you? And you find yourself alone and frightened and dependent. Then you come to the realization that the medical profession doesn't know jack about this illness. And those government programs you paid into since you were sixteen? Forget being able to access it without a two year fight to get the money you deserve. And then you have to spend money to hire a lawyer. It's a grim reality. Yet in spite of this all of us with this illness continue to live and even live enjoyable lives in spite of it.

I'm a baby when it comes to this illness. People who have been sick for years and years are very wise and incredibly strong people. These are some courageous people. They are the "elders" in all of this and they are people I look up to. I thank God for them.

I've spent the last year in sort of a denial. I've undergone treatment for lyme disease, babesia, mold illness, and am now Valcyte. I've researched this illness to death. I've gone to various doctor's. I've taken a self help course. I've survived the devastation this has caused to my external life.

And then there are the thoughtless, hurtful comments people have made. One person commented after hearing my doctor had died and I had to have toe surgery what in god's name has this woman done in a previous life! and something about my bad karma or my overhearing this same person say disparagingly about all my supplements good god why all these supplements or something like that. I've stood by and done nothing. Or my ex-acupuncturist telling me I need to laugh more or breath deeper or get out of my environment or that it's all in my head. Or there's the "don't you get bored?" comments. No I don't get bored. I'm too sick to be bored. I'm too busy figuring out how I can get more functioning. I long for boredom! And karma? Don't we all go down that path? I sure have thought that I did something horribly wrong to deserve this. It's awful thinking. These are some of the more benign comments.

It's bad enough that I've lost my old life. And yes I have lost my old life. I'm tired of people telling me I'll get back to it. You know what? I won't. I'm trying to get through my grief about it and then discover my new life.

I know people feel helpless when it comes to this illness. You don't think I feel helpless? I'm tired of taking care of others around this. Really I don't need anyone to DO anything or FIX anything I just need contact. It's very simple. Just contact and a willingness to be with me as I cry about this or be with me in the dark times not just the good ones.

I've been lucky that my family believes me. I just wish we were all a little closer but we're not.

I'm very grateful for my blogging group-the people who comment here. I can't express how much it means.

On another note I downloaded all the forms from Bruce Campbell's website. I'd post the link but I can't remember it and I have to keep writing or I'll forget what I want to say. Anyway, these forms will allow me to track my symptoms. There's a great one about pacing. So I'm going to learn how to manage this illness. I also sent my CFIDS doctor a form for handicapped parking.

I plan on having a good day. It's a nice feeling.

Thursday, April 2, 2009

Ramblings

I'm really trying to work on acceptance and am finding it's a circular rather than linear process. There are moments when I can accept this new reality. This is usually followed by some fear because I find it quite scary to admit to myself that I'm this sick. And that I really did lose all that I did.

A couple nights ago I was watching a very interesting documentary about the first plague that hit in the 14th or 15th Century wiping out close to half the population in the world. As I watched I tried to put myself in their place wondering what it must have been like. It sounds horrific. I was struck by this fact: new life came out of that period of time. The Renaissance Period followed this period of darkness and death. It was a good reminder that rebirth follows death. The word Renaissance comes from a french word meaning rebirth. I believe that psychological rebirth follows the psychological death experience. I just have to get there.

How do I do that? I think it means bearing the unbearable until something new arises whether that new thing is a new attitude, a new relationship with myself, acceptance, a sense of peace, who knows.

I don't know what's next. I do know that this is a very difficult reality to get used to but I'm convinced it's possible because others who have commented on my blog have said so. Right now I'm taking it on faith.

Treatment Updates:

I've been taking Amantadine since Saturday. This time my doctor prescribed liquid Amantadine because I can't swallow pills. He says Amantadine is not only an antiviral but also helps the brain produce dopamine and norepinephrine-both of which can become depleted in the brains of people with CFIDS. It's too soon to tell if it's helping.

I started back on D-ribose three times a day. I'm glad to report that I'm not feeling as much cramping in my muscles (especially the calves) and not as much muscle pain.

I've increased my potassium intake because my doctor thinks my potassium levels might be too low (causing muscle cramps). He wanted me to take prescription potassium. I picked it up at the pharmacy but the pharmacist didn't do a consult with me. I always crush my pills and my doctor knows this. For some reason I decided to look up the prescription on the Internet. I'm glad I did because the prescription was for extended release potassium. Had I crushed it and then swallowed the crushed powder I could easily have had a heart attack because it would have been too much potassium in the bloodstream. This is a good reminder for me to always look things up. I just can't count on doctors and pharmacists to provide the information.

I've been on the methylation protocol (simplified) for maybe eight months? I think it is helping a little. This is a very slow treatment to restore the methylation cycle. It can take a year or two for improvement though some people have had dramatic improvement in less than that time.

It's been two months, one week and three days on Valcyte. I think it might be helping a little but I won't know for sure until six months but in four might have an idea of how much it will help.

Sleep is challenging but I find that if I take 1mg of sublingual Melatonin, 300mg Gabapentin, 1mg Klonopin, and 20 drops of liquid doxepin that I can get at least 8 hours sleep but it's still a fitful sleep.

I have to figure out a way to deal with the isolation and loneliness of this. I woke up today feeling it acutely. I actually went out to get my blood draw a week early just to be around people. Then I went and picked up a prescription and sat in the parking lot and simply watched people.

There's just a lot to get used to.