Monday, 10 June 2013

Being Sick Sucks Pt. 2

When I feel well vs when I feel sick - two totally opposite polarities in my life. When I feel well, I wake up in the morning feeling bright and raring to go, can't wait to start my day, get at those chores, get outside, call people, participate in life. I can get up, take a shower, wash my dishes, pop in a wash of clothes and go for a nice walk, and feel like a 'normal person', a part of the human world, society. I'm energetic, happy, friendly,bubbling over with the joy of living. I'm interested in everything,I want to do everything, go everywhere, see everyone, just experience life to its fullest.

Unfortunately, this all leads to a lot of running around, staying out too late, doing too much, and then, Wham, the CFS catches up to me. Then I become very weak,extremely fatigued. It becomes a chore to even roll out of bed, by body feeling weighted, achy and sore, my mind cloudy, confused,dim. I sleep for 20 hours at a time, taking all my energy to haul my self to the washroom and back.
Some days I'm able to sit up and read a few hours before collapsing back into oblivion for another 20 hours, other days, I sleep round the clock, like being in a coma, barely conscious of anything around me. I can barely talk, it's hard to get the words out of my mouth, my brain just won't construct a proper sentence and it takes too much energy to move my mouth. Eating falls by the wayside, as do, of course any chores. Dishes pile up, laundry doesn't get done, dust and dirt collect, I run out of milk, egg, bread, juice.

The ferrets get bored and frustrated and wonder where their mother is. This can go on for quite some time, the longest being 3 weeks. Sometimes it's only a day or two. Depending
on my stamina I can be up and going well a day or two, down a day or two, or go quite well for several weeks and be down several weeks. It fluctuates like mad.. When I'm down and out, my whole world shrinks. It becomes just me, my ferrets, my apartment, my trying to cope and get through the bad spell.
I become depressed, frustrated, and angry. I berate my self, my body, for being sick and try to make it do what I want, try to make it WORK right, but the more I push the sicker I get. Then, finally, when I do feel better, have rested enough to satisfy my weird body requirements, I have 10 loads of wash to do, an entire apartment to scrub, desperately needed grocery shopping to do, loads of dishes to wash, ferrets to walk, relatives to visit, phone calls to make, people to catch up on.

And then, of course, after the mad flurry of trying to catch up on everything (which I never do, there just isn't enough time to do it all before I 'crash' again) after being sick, what
happens.....I do too much and end up back in bed! I know the secret is to pace myself, to try to balance my activity, but when I feel well I have a very hard time controlling my activity.
After being isolated, sick and tired I want to get out and live, I want to get ALL my chores done AND see my friends AND go for walks AND....and everything. So on it goes up and down, i'm always searching for the elusive balance of energy that will allow me to function every day at, at least, some fairly consistent level.
The quest continues....
©Allie Brosh
Pic © Allie Brosh

Wednesday, 29 May 2013

A Different World - Writing.Com

A Poem by Moi, trying to escape my life, problems, illness's and addictions.

A Different World - Writing.Com

Tuesday, 14 May 2013

My nightly regine

Just tires me out looking at them all. 2 large glasses of water to get them down.  I'll list what they are and for what tomorrow, to sleepy now.  Will start making regular posts again, had a bad few months. Hi to all, gentle hugs.

Things I miss: Part 1 Singing

I adored singing all my life. I sang my brothers and sisters to sleep every night with Kriss Kristofferson songs, and was often asked by my mom to sing. I sang constantly on car rides too. I was in church choir and took guitar. I had a boyfriend who played guitar and we would sing together at variety concerts, around campfires with others, etc. I adored it and was told I was a good singer. After I became ill I tried taking singing lessons to better myself voice and learn to read music. It was then I found the extent of the drain it took on me. I couldn't continue as it would leave me bedridden for days, exhausted and with severe air hunger and painful costochondritis (see below).

Now, on good days, I sing to myself as I sweep a bit or sing in the shower or car. My voice is terrible, a rusty croak, my current boyfriend puts up with it though, which is nice. I tried doing two YouTube videos awhile back of my singing “Non, Je ne regrette rien” and “The Night the Lights went out in Georgia I redid them over and over for 3 days or so, unsatisfied, and ended up bedridden and starving for oxygen for weeks. My rib cage and chest wall were severely inflamed and I was in terrible pain So, yep, definitely something I miss. What do you miss most in your restrictions due to your illness??

Air hunger is a phrase used to describe an ongoing sensation of not being able to get enough air to breathe comfortably. A person suffering from air hunger may feel the persistent need to take deep breaths or yawn in an attempt to get more oxygen into the lungs. Some feel as though they have “forgotten” how to breathe correctly, can't breathe deeply enough, and may be frightened at the prospect of not being able to breathe.
The seeming lack of oxygen can also trigger dizziness, hyperventilation, and the fear of suffering a heart attack. -Leigh Peterson


Upcoming Part 2: Dancing

Thursday, 9 May 2013

this blogger helps explain why i haven't been posting lately

This blogger is wonderful and this entry of hers helps explain why I haven't been posting lately.

At first, I'd try to explain that it's not really negativity or sadness anymore, it's more just this detached, meaningless fog where you can't feel anything about anything — even the things you love, even fun things — and you're horribly bored and lonely, but since you've lost your ability to connect with any of the things that would normally make you feel less bored and lonely, you're stuck in the boring, lonely, meaningless void without anything to distract you from how boring, lonely, and meaningless it is - Allie

Hyperbole and a Half: Depression Part Two

Saturday, 23 February 2013

Adding myself to technorati

Not a interesting post, just something i have to do to add myself to Technorati, a blog list site.  Sorry. 


Tuesday, 12 February 2013

Cfs and exercise

Comparing Exercise Advice
 January 18th, 2013 Jennie Spotila

  Exercise is an issue for every CFS patient, and there is no shortage of advice on whether and how to do it. On January 14th, the CDC hosted a conference call as part of its Patient Centered Outreach and Communication Activity (PCOCA) efforts. Dr. Nancy Klimas and Dr. Connie Sol presented their exercise advice for people with ME/CFS. I’ve seen some sharp criticism of the presentation, so I thought it would be helpful to compare their advice to the recommendations from Dr. Christopher Snell’s group at the Pacific Fatigue Lab. Dr. Snell and his collaborators (Staci Stevens, Todd Davenport, Mark Van Ness) have done the most work on exercise capacity in CFS, and published a conceptual model for safe exercise in 2010. You can learn more about their work in this webinar they gave last year.

Why Do It?

It’s common knowledge that exercise is an important part of preventing heart disease, diabetes, and osteoporosis. And I think most CFS patients would be eager to exercise if it did not make us sick. On Monday, Dr. Klimas said that deconditioning explains much of the dysautonomia seen in CFS. I think she may have overstated it because there are physically fit people who develop POTS, NMH or other orthostatic conditions, but deconditioning certainly wouldn’t help. Dr. Klimas described herself as the “perfect advocate to talk about exercise” because of her decades of research and clinical experience focused on biomarkers and immune function. She does not believe exercise is the only possible treatment for the disease (unlike proponents of the psychosocial model), but she also does not think it should be ignored.

I should note that while Drs. Klimas and Sol use exercise to provoke PEM so they can measure the gene expression cascade that follows, they have published no papers on exercise physiology in CFS. Snell and his group have published multiple papers on the topic, including a study that shows deconditioning is not the cause of PEM. Despite showing that there is metabolic dysfunction unique to CFS, Snell and many other experts recommend being as active as is safely tolerated. Stronger muscles will lead to less pain. Being as physical fit as possible will improve our chances with heart disease and other long-term consequences. If we can safely tolerate a certain kind or level of activity, we should do it. The emphasis must be on the word SAFE, and activity should be tailored to each individual patient’s capacity.

Identifying a Target Heart Rate

My articles on PEM and exercise explain the body’s energy systems and the importance of heart rate in detail. For purposes of this post, I can say that both Klimas and Snell agree that heart rate at the anaerobic threshold is the limit for safe activity in CFS. So how do we identify the correct heart rate?

Dr. Sol uses a single test in which the patient exercises to exhaustion. Multiple measurements help identify the heart rate at the anaerobic threshold, and then that heart rate is used to design an individualized exercise protocol. Dr. Snell and Staci Stevens use a two day maximum exercise test to do the same thing. That second test is critical because CFS patients’ metabolic function declines significantly after the first test. In my own case, my heart rate at the anaerobic threshold went from 105 on day one to 95 on day two. Under Sol’s system, 105 beats per minute would be my maximum heart rate, but that would be too high on any day that I was not well rested. My personal view is that by skipping the second test, Sol and Klimas are at risk for setting the safety limits too high for most patients.

Not everyone can take a two-day exercise test (for a variety of reasons), so there is a simple calculation for guessing at your heart rate at the AT. Klimas and Sol recommended: 220 minus your age times 60%. In my case, (220 – 44) x 60% = 105.6 bpm (matching my AT on day one).  Stevens recommends 50%, or (220 – 44) x 50% = 88bpm (lower than my AT on day two). Here’s the problem with the calculation: a bedridden patient would not have the same limit as me (housebound) or a friend of mine (who can leave the house every day). We’re all sick with CFS; we all have metabolic dysfunction. But it’s unlikely that our heart rate limits are identical.  Patients must be cautioned that the calculation is a guess only; careful experimentation is necessary to establish your safe level.

Defining Safe Activity

Both Sol and Stevens agree that the safe level of activity is the level that does not produce symptoms. Dr. Sol said that she knows she has prescribed the right level of activity when the patient reports that he/she feels no difference. Stevens has said that any symptom flare that lasts more than a few hours is too much and that activity must be scaled back.

What qualifies as exercise? Both Sol and Stevens agree that activities of daily living should be seen as exercise. The effort required to cook a meal or shower can raise your heart rate too high, and may need to by modified to stay in the safe zone. They both agree patients should examine the activities that make them tired, and try to adapt and pace those activities. Dr. Klimas said that these methods will lead to a more even, reliable supply of energy; Dr. Snell has said the same thing.

Beyond activities of daily living, Sol suggested yoga or non-weight bearing activities such as water exercises. She recommended starting with a minute or two of activity followed by a few minutes of rest, repeated five times once a week to start. In contrast, Stevens recommends a more modest starting point of stretching and range of motion exercises. Patients should advance to low intensity, short duration activity only if the stretching is well tolerated. For Snell and Stevens, heart rate is not the only indicator of capacity. Patients must pay attention to their perceived level of effort, and avoid activities (or activity duration) that feels “somewhat hard.”

Severely Ill

There is no question that there are CFS patients who are too sick to come to a lab and pedal a bike for eight minutes. Accordingly, these patients have not been studied for metabolic dysfunction and exercise capacity. Drs. Klimas and Sol made no comment on Monday about what these patients could or should do. I interviewed Staci Stevens as part of the research for my article on exercise, and based on her advice I wrote:

A bed bound patient may need assistance to turn in bed or complete basic activities such as showering, but heart rate biofeedback can help identify the appropriate pace and duration of these activities. Bed bound patients can also try deep diaphragmatic breathing, perhaps six deep breaths at a time. Deep breathing will lower heart rate, and also work the large muscles of the diaphragm. Severely ill patients might begin with passive stretching, where a physical therapist or caregiver moves the patient’s limbs slowly and carefully to gently stretch muscles and try to improve flexibility.

This must be done very cautiously. There is simply no published data that investigates the metabolic dysfunction in bedridden CFS patients or that explains what they can do safely. The cost of trial and error can be high, so patients should be very careful.


Reasonable and realistic expectations are an important part of any rehabilitation effort. Snell and his group describe the goal as being as active as possible within toleration, and hopefully this will lead to a more predictable energy supply (eliminating the push-crash cycle). In contrast, Dr. Klimas said on Monday that patients will show improvement if they follow the program, and that when they stay below the AT they feel “much better.” Then Dr. Klimas claimed that some patients have been able to return to work or athletics. This is an extraordinary claim, especially in the absence of published data. How impaired were these patients to start with? How long did they follow the program, and was the program standardized across patients? Did these patients show objective improvement on subsequent exercise testing? How long did their improvement last?

Personally, I was very surprised to hear Dr. Klimas make this claim. She is quite familiar with the severity of the disease, the dearth of treatments, and the danger of false hope. In my opinion, claiming that pacing with a heart rate monitor and slowly progressing exercise is curative in the absence of published data is misleading, at best. The notion that exercise will make us all better is pervasive and potentially harmful to patients. Show me the data.

The Comparison

There are many similarities between the advice of Klimas and Sol on the one hand and Snell and Stevens on the other. Both sides agree that patients should be as active as they can safely tolerate. They agree that activities of daily living should be seen as exercise. Both recommend using a heart rate monitor to pace activity by staying under the anaerobic threshold. Both recommend starting very slow with exercise, and avoiding exercise that increases symptoms.

There are also some differences. The two groups calculate the safe zone differently, with Klimas and Sol potentially setting limits higher than patients’ anaerobic thresholds. Klimas and Sol offered no advice to bedridden or other severely incapacitated patients, while Snell and Stevens offer at least a little guidance. Finally, Snell and Stevens do not suggest that their program is curative in any way. They suggest a cautious but realistic goal of eliminating the push-crash cycle. In contrast, Dr. Klimas was quite expansive in her claim that her program had helped some patients return to work.

Despite their differences, both groups give the same basic advice to CFS patients: use a heart rate monitor to help you recognize when you are doing too much; ensure adequate rest; be as active as you can without triggering symptom flares or post-exertional malaise. This is a good starting point, but I hope that one day we will have access to physical therapists and others trained to help us navigate these limits. From my own experience, trying to apply this expert advice on my own has been unnecessarily frustrating.

A bit about my CFS journey

Hi,  I thought I should do a post about how I got this illness and some things that have happened since.  My name is Dee, I am 45 years old, living in the Maritimes. I developed CFS in 1994 after working all one summer spraying pesticides and working on pesticide sprayed fields. I was a very active 27 year old, did karate, swam, hiked, camped, horseback riding, played basket ball etc. By the end of the summer job though I had become completly disabled. I had gone down hill over the summer but totally collapsed by late Aug. I had several bouts of pesticide poisoning that summer, as well as heat stroke, and I've always had a weak immune system, so basically it just did me in.

My CFS runs the gauntlet from moderate to severe.  Right now I'm in a relapse. I haven't been able to work for a long time. When I first got sick I pushed myself for 5 years, trying to still do all I used to. I tried to do my Masters but had to drop out, I tried to work and I tried to travel. I tried keeping up with my friends, and I didn't tell anyone I was sick. I was ashamed.

I finally had a nervous breakdown and ended up in the hospital for a month. They put me on antidepressents, but did nothing to help me with my illness. It wasn't until I had a second breakdown in 1999 that help came. I had found a wonderful Dr. and she sent me to the Woman's College Hospital in Toronto where they have an chronic illness/environmental clinic. These people were wonderful. They diagnosed me with CFS and multiple chemical sensitivity, brought on by pesticide poisoning. They then referred me to a wonderful psychiatrist who specialized in psychotherapy and had other clients with cfs, fibro, etc. I saw him every week and he always made everything better.  He kept me grounded and helped me cope with my everyday problems and frustrations.

They also referred me to a environmental specialist who dosed me with nutrient IV's, glutathione, put me on home oxygen (didnt help), and a whole slew of other stuff. I'm going to write an entry soon on everything I have tried, and what I'm doing (on) now. Keep an eye out for it.

Then I moved and lost all my support lines.  I moved to be closer to my family, I really missed them and wanted to be near my aging father. I was hoping I could find the same supports here in the Maritimes as in Ontario.  But It's not so easy here. My family and my boyfriend are now my support and they're great, but unfortunately my Dr. is not great and I really need more help.

Fortunately, after a mental meltdown at my Dr.'s yesterday I am now going to be referred to a social worker for someone to vent too, and a well known, reputable environmental clinic, which I'm really hoping can help me. So that's my story, or some of it, except the fact that I am owned by two ferrets who brighten my everyday, and a sweet, caring boyfriend who I found after being alone 10 years. Thanks, hugs to all, and all my best wishes, Dee

"I y'am what I y'am and that's all that I am" - Popeye
"Que serai, serai"

Wasted Days and Wasted Nights

Hi folks, sorry I haven't updated this blog in awhile.  The holidays were crazy, I got so tired and have been so since.  This month has been a total write off.  I went to visit my aunt for 3 weeks and was terribly relapsed the whole time.  Instead of having fun, going out to eat, seeing movies, visiting etc., I lay in bed 80% of the time in an almost coma like state.  When I awoke, I was able to drag my butt downstairs to eat supper and visit a bit with my aunt, maybe watch an hour tv, then nod off, and back to bed.  The unfortunate thing is I think this could have been avoided.
Before I left on my trip I felt like I was developing a bladder infection.  I decided to self treat with lots of cranberry juice and Buscopan for the bladder spasms.  I thought it was gone, though once in awhile, while visiting, I'd feel some mild symptoms.  My last day there, the symptoms increased, and when I got back home and went to my Dr., sure enough I had a raging infection with blood in the urine and all.  I'm so mad at myself because this infection is what probably had me so sick during my visit.  If only I'd gone to the Dr. before I left. Anyway now I'm on antibiotics, which sadly, always make me feel like crap the week I'm taking them and the week after, so more wasted time. Oh, well, my own stupid fault for being slack about the infection in the first place.
Now, however, because I've been so sick my depression and anxiety have got out of hand.  The day I went to the Dr. I ended up freaking out, breaking down, crying, wailing, yelling, made a total ass of myself......but on the upside of my meltdown he has now put in an urgent request for me to get in to see a social worker at the mental health clinic and put in a urgent referral to the environmental clinic which deals with patients with CFS/ME/MCS.  They have Dr.'s, nurses, physiotherapists, psychologists, psychoanalysists, sauna therapy, a dietician, allergy testing and much more.  So these steps are something for me to look forward too, I'm in a better mood already!
Oh, yes, and he also started me on Lyrica, which he says is very good for CFS, and he upped my clonazepam too, so hopefully all will settle now and I'll be feeling better soon.  I'll keep you up to date on my Lyrica trial (hope it works, it cost a fortune) and the clinic happenings once I get in. I would be VERY interested in hearing from anybody who had any experience with Lyrica.  Hugs to all, thanks for reading this, wishing you all good things