Wednesday, 30 July 2008

My ex-housemates and ex-friends

I felt hurt by a lot of things my ex-housemates said and did. Since writing about my mum, and other issues that were eating away at me in a journal, I've felt a bit better. So I think I have to get this out:

I think the best word to describe how I feel about my ex-housemate, P, and all his friends is "disappointed". After three years of living with me, he showed little sympathy for me when I got sick.

A few weeks after I first got sick, I was unwell still; yet P kept insisting that I looked better already. I felt like he was suggesting that I was just malingering.

And when I found out that I had CFS, he said it was good news. How can being diagnosed with a chronic condition be good news? I think he assumed it was the doctor's way of saying I was just tired.

But what really got to me was that instead of offering me some food or consolation while I was sick, he started talking about me behind my back. Every day, I heard him and A whispering about me in the kitchen.

Once, I even heard him say that he didn't want to live with me next year, because M (his girlfriend) said she didn't want to live with someone who "doesn't come downstairs for dinner". Why could they not see that I wasn't coming down to dinner because I was so fatigued, I couldn't make it down the stairs? Instead of thinking I was too sick to come downstairs, they chose to think that I was just being "odd". I'm so insulted that clearly they never believed I was sick, they just thought I was weird. Didn't they know me better than that?

It's been about nine months since we moved out of our shared house, and I haven't heard from him or any of my so-called friends once. P, J, D, M and A all know that I'm sick. And yet they haven't called me once to ask how I'm doing. Even if I wasn't sick, how can someone live with another person for three years, and then not even want to meet up with them for dinner once in nine months? It's true that I haven't called them either. But I'm the one who's sick; I don't have the time or energy to ring everyone to check up on them! I don't know if I should be happy or sad: on the one hand, I don't want to see them anyway; and on the other, I thought they were my friends, and friends would want to stay in contact.

Speaking of staying in contact, since I got sick, I haven't heard from my other friends, B and T either. I used to see B almost once a week, before I got sick. And I grew close to T (who was in my classes at uni) towards the end of my bachelor degree, to the point that we messaged each other whenever things weren't going our way, and to the point that he was one of the last people I saw before I left for my African travels. Both B and T have just disappeared.

What makes me sad is that the people who I thought had been my closest friends in the last three or four years, really weren't my friends at all. I haven't just lost my health, I've lost half of my friends, and the feeling of security that they offer. I feel foolish and embarassed from having once believed these people were my friends. And at a time when I need the support of friends and family more than ever, I've never felt more alone.

Tuesday, 29 July 2008

Third MORA treatment

Last week I think I said I was on the proper MORA machine... well, I was wrong, I'm still on MORA Super, which is the gentler machine.

The treatment felt the same as last week's: I felt a bit more drained than usual afterwards, but I'm fine now. The nurse asked me some questions she asks me at every visit. Also, she asked me if I was all right. She said I looked a little bit worse than I did last week.

I've had a rough week. Mentally, I'm just kind of tired of dealing with my symptoms, and other people. As of today, it's been been a year since I first got sick. That's one year of my life I've spent being in pain, fatigued, confused, frustrated, and ridiculed... it's just quite a lot to bear. I might sound like I'm exaggerating, but, I've never wanted to yell out the saying "Don't judge someone else until you've walked a mile in their shoes" more. It's as though my life has kind of stagnated, and so all the little things that wouldn't usually bother me have accumulated.

Dr S said I might be crashing because I've been coming off nortripyline, which is quite an addictive drug, apparently. So he's booked me in for an "urgent" laser acupuncture session this Thursday.

The following Monday, I'll be having my third appointment with Dr S (these MORA treatments have just been nurse visits). I'll keep you updated on how I go.

Monday, 28 July 2008

Tips: Exercise

Most people with CFS will tell you that exercising is simply not possible for them.

I have CFS, and that's what I thought too. But it is possible, if you lower your expectations: exercise doesn't necessarily mean going for a run, or even a brisk walk.

Start small
Light exercise is still exercise. The key isn't exercising for long periods of time, it's exercising regularly. If you can only manage a walk from your chair to your fridge, that's all right. Just try to do it every day (or every other day, if you're in a particularly bad state).

Stay within your limits
It's important to stay within your limits. I was told that even if you're managing to go for a decent walk every other day with few after effects, only increase your speed or the length of time after a few weeks. And when you do increase your speed or length of time, only do so by 10%-20%.

Types of exercise
There are two kinds of exercise: aerobic and resistance. Aerobic exercise consists of activities like walking, running, bike riding, swimming, etc. Resistance exercise consists of activities like yoga, pilates, lifting weights, and callisthenics (push ups, stomach curls, lunges, etc). Aerobic exercise burns fat, and resistance exercise improves muscle tone.

I was advised to do aerobic and resistance exercise on alternating days, and to leave one day a week off as a rest day. The rest day is really important. When you do resistance exercise, it tears the muscles, and when the muscles repair themselves, you get a more toned physique. If you don't have that one day of rest, the muscles won't get a chance to repair themselves.

Aerobic exercise
For aerobic exercise, I go for 23-minute walks every other day. My doctor told me to stick to walking for now. In the 23 minutes, I vary my speed a lot. Here's what I do:

· For the first three minutes, I stand -- Standing is tough for me, so I call this "activity level one"
· For the fourth minute, I walk slowly -- I call a slow walk "activity level two"
· For the fifth minute, I walk at a moderate pace -- I call a moderately-paced walk "activity level three"
· For the sixth and seventh minutes, I return to a slow walk
· For the eigth minute I go back up to a moderate pace
· For the ninth minute I walk at a fast pace -- I call a fast-paced walk "activity level four"
· For the tenth and eleventh minutes, I go back to simply standing.

... and I keep toggling between activity level two, three and four for the remainder of the walk.

It's said that by using this sort of "step-up workout", you'll get the maximum benefits for a minimum amount of time. I use a "step-up workout" mainly because otherwise, I'd get bored. Counting the minutes gives me something to do! And before I know it, the walk's over.

And remember, even if you can't manage a fast walk or even a moderate walk, you can always adjust the "levels" to suit your abilities. For instance, your "activity level two" could be walking at a very very slow pace, instead of just a slow pace.

Resistance exercise
Every other day, I do callisthenics (push-ups, stomach curls, etc). I only do four sets of six repititions. You might think that wouldn't do a thing, but I do them regularly, and I find that each time, it gets a little easier.

Final notes
If you're anxious or worried that you might injure yourself, it might be an idea to start off doing your exercise at home. That's what I did. I started off by walking up and down the length of my apartment for 20 minutes. Callisthenics can also be done at home.

There are so many benefits to exercise. And once you start doing it, you might find that you look forward to doing it, because it makes you feel good.

Just remember these points:

· Some is better than none
· Start small
· Stay within your limits.

Give it a go; you might just surprise yourself!

Saturday, 26 July 2008

What's in a name?

The general public don't know much about CFS, and what they think they do know is often wrong. For instance, often CFS gets confused with fatigue.

I think part of the confusion about CFS is because of all its names. Let's have a look at those names. Here are the names I've heard of:

· Chronic fatigue syndrome (CFS)
· Chronic fatigue and immune dysfunction syndrome (CFIDS)
· Myalgic encephalomyelitis (ME)
· Post-viral fatigue syndrome (PVFS).

CFS, CFIDS, and ME are used interchangably, as far as I know. In the States, it seems like it tends to be called CFS and CFIDS. In the UK it seems like it tends to be called ME. And in Australia, it tends to be called CFS.

PVFS is what it's called when the condition has lasted for less than six months. After six months, it's called CFS, CFIDS, or ME.

Fibromyalgia (FMS) is a related condition. People with CFS can have fibromyalgia as well (and vice versa). The way I understand it, the two illnesses have very similar symptoms. "Fibromyalgia" means pain in the fibrous tissues in the body. Accordingly, the main symptom of fibromyalgia is musculoskeletal pain; whereas in CFS, fatigue is the main symptom. (My doctor says I have a bit of both... lucky me!)

So, why does one condition have so many names? I think it's because none of them are accurate. Since fatigue is the main symptom of CFS, it made sense to name it so, at the time. The problem is that people who don't have CFS don't realise there are other symptoms (cognitive problems, widespread pain, dysfunctional sleep, balance problems, light sensitivity, gastrointestinal problems, and the list goes on). As a result, often, people with CFS don't get much sympathy; because people think that simply being "tired" can't be that bad.

That's why the name "myalgic encephalomyelitis" is more popular in some places. It's supposed to be a more accurate name, with "myalgia" meaning pain in the muscles, and "encephalomyelitis" meaning an inflammation of the brain and spinal chord, usually caused by viral bacterial, fungal or parasitic agents.

The problem with the name "myalgic encephalomyelitis" is that it isn't accurate either. Doctors around the world don't agree on what the cause of CFS is. Some say it's brought on by the initial virus that some CFS patients can trace the beginning of their symptoms to. But CFS doesn't always begin with a virus. In some people, the symptoms just gradually appear. That means the name post-viral fatigue syndrome (PVFS) isn't accurate either. I think the root of the problem in naming CFS is that the condition is poorly understood.

What about CFIDS? Well, the name CFIDS (chronic fatigue and immune deficiency syndrome) came about because CFS is linked to changes in the body's immune system. To me, CFIDS seems like the most suitable name for the condition, but for the sake of clarity, I stick to CFS since this is the term most doctors use in Australia.

Thursday, 24 July 2008

From Fatigued to Fantastic! book

For the people who read my personal blog: sorry about the double post, but I'm posting this here too because it's CFS-related, and it might be useful to anyone with CFS who stumbles across this blog.

From Fatigued to Fantastic! is the name of a book I just finished reading. It's written by Jacob Teitelbaum, who is a doctor who had CFS and recovered from it. Now, he's the national (American) medical director of the Fibromyalgia and Fatigue Centres in the US.

If you read only one book about CFS, this should be it. It's comprehensive, yet easy to read.

In the book, Dr Teitelbaum talks about his methods in treating CFS. I was interested to find that Dr Teitelbaum's methods in dealing with CFS are very similar to my new doctor's methods. At a basic level, both doctors do the following:

· Treat pain and sleep disturbances
· Help mitochondria through nutrition
· Balance hormones
· Treat underlying infections

Also, Dr Teitelbaum and my doctor both recommend both prescription and natural medication (although my doctor prefers the latter).

So if anyone has any doubts about my doctor's methods, this would be a good book to read, because even though the two doctors don't know each other (to my knowledge), both of them seem to think that the most successful way to treat CFS is by using a wholistic approach.

Even the smaller chapters of this book are useful. There's a chapter on finding an appropriate physician, and chapter on disability insurance which would be very useful for US residents.

All in all, From Fatigued to Fantastic! was well-worth the read; and because it explains aspects of the condition in detail, it helped me understand my own doctor's methods better.

Monday, 21 July 2008

Second MORA treatment

My second MORA treatment was pretty much the same as the first. Except, I think we used the normal MORA machine this week, not the MORA Super (the gentler machine).

When the MORA machine finished doing its thing, I felt a bit drained. I still feel a bit drained and achy now, a few hours later. And I suspect it'll be an early night for me tonight. But I think that's a normal initial reaction to the treatment. I'll probably feel better tomorrow or the day after tomorrow.

Last week, I didn't feel too good the morning after my MORA treatment. The next day, I was fine though. The nurse said it was a slight reaction to the treatment, which is quite normal. I felt pretty good for the rest of the week, so I think it's working.

I think I mentioned this before, but the MORA treatments are one part of a bigger treatment plan. I'm also on a strict diet, I'm doing light exercise, and I'm taking a lot of supplements.

It's making a difference, even though it's only been a few short weeks since I started seeing this new doctor!

Tuesday, 15 July 2008

First MORA treatment

I had my first MORA treatment yesterday. It was a quick and painless.

The MORA machine was invented by a German doctor and a German electrical engineer. I'm not going to pretend I know how it works, hehe. But I think, basically, it takes in the body's energy, reads it, and if it receives any "bad" signals, it inverts them and send them back to the body. If it receives "good" signals, it amplifies them. That's at least how I understand it.

Also, the nurse likened it to acupuncture.

I had to hold a metal rod in each of my hands and put my feet on two metal sheets. All the metal was attached the MORA machine.

The machine I was hooked up to was actually the MORA Super, apparently it's a bit gentler than the normal machine. The nurse said since I'm quite sick, they should go easy on me with the MORA treatments, at least to begin with.

Sunday, 13 July 2008

Exercise (week two)

I just finished my second week of exercise, and I'm another centimetre thinner at the waist, woo hoo! Normally, I'm not the type that counts centimetres, but my exercise booklet said I should monitor my progress. Since I don't have a weighing machine (or a BIA machine), I have to make do with waist measurements.

I really look forward to my exercise these days. I try to do it later in the day, so that if I get overly tired, it's all right, because I can just go to sleep.

My exercise is still ridiculously light. I've been sticking to walking, as Dr S suggested. Even so, I am seeing results and I do feel a bit better. This week, it was a bit easier to do push-ups, so I think I am progressing.

I know what you're wondering. If I'm capable of a bit of exercise, why didn't I do it before? Well, I think I know my limits a bit better now. In the past, when I tried to do exercise, I pushed myself too far. I kept injuring myself (mainly my shins, weirdly). Not knowing my limits, it just made my condition worse. Also, it's easier now that I have a doctor who's familiar with CFS telling me that if I can do a little bit, it'll make me feel better.

Dr S said that a suprising amount of illnesses can be cured with just diet and exercise.

If anyone's wondering what the benefits of a little bit of exercise are, I've pulled this list from a booklet called Your Guide to Exercise, made by Metagenics:

1. Exercise promotes weight loss.
2. Exercise decreases cardiovascular risk.
3. Exercise improves circulation.
4. Exercise improves muscular tone.
5. Exercise reduces stress.
6. Exercise protects against some cancers.
7. Exercise helps increase your metabolic rate.
8. Exercise lowers your blood sugar.
9. Exercise increases "good" cholesterol.
10. Exercise helps lift your mood.
11. Exercise lowers your blood pressure.
12. Exercise boosts your immune system.
13. Exercise improves your body's ability to use the insulin it makes (reducing your risk of developing diabetes).
14. Exercise keeps bones and joints strong.
15. Exercise boosts self-esteem.

Thursday, 10 July 2008

My second appointment with Dr S

My second appointment with Dr S was just as comprehensive as the first. It lasted for about an hour and a half.

He said something that was music to my ears: "There's something going on in your body, you're not just putting on and act." Hooray! Finally, a doctor who doesn't think my aches and pain are imaginary!

The first thing he did was go through the results from my blood tests. To cut a long story short, the results indicated that there is something not right going on in my body. The main thing to note was that I have the lowest vitamin D levels he's ever seen. He said any other doctor should have picked that up.

The second thing he did was use the MORA machine to see what foods I'm allergic to. Now I have an even bigger list of food I can't eat, on top of what was ruled out last week.

I have an appointment with the nurse next week for a MORA treatment, and a few weeks later I'll be seeing Dr S again. We discussed a lot of other things at my appointment -- like a bladder infection, gut dysbiosis and candida -- but I think I'll save that information for later.

I feel good about this treatment plan, and I'm excited to see what happens next.

Tuesday, 8 July 2008

Bio Impedence Analysis (BIA)

I had a nurse visit at Dr S's clinic yesterday. The nurse did a BIA (Bio Imepdence Analysis); a test that measures body fat, muscle levels, water in cells, and so on.

The nurse took some measurements, and hooked me up to a machine that passed a small current through my body. After a few minutes, she entered my details into her computer and printed out the results.

Apparently I am quite healthy at a cellular level. She said my muscle tone is outstanding, and my cells are fine. According to the results I'm a bit underweight, though.

She said I must have been pretty active before I got sick. It made me really happy to hear that, because I've been reading Dr S's handbook, and it goes on and on about how one factor that might contribute to chronic fatigue syndrome is not having enough exercise. I couldn't believe that I wasn't doing enough exercise! I used to walk to uni, or ride my bike, go horse riding regularly, and when I was living at college I joined quite a few of the college sports teams. So I'm happy to hear that my muscle results were good.

My next appointment with Dr S is later this week, so I'll probably have another update by then.

Monday, 7 July 2008

The psychology of healing

I had to buy Dr S's handbook, and in it, there's a chapter called "The psychology of healing".

Basically, Dr S suggests that his patients should have a positive attitude towards their recovery; and part of that positive attitude should be a high self-esteem of oneself.

I do believe I'm going to recover, some day. The thing I'm worried about is my self-esteem. After years of listening to my mum tell me how stupid I am, it's difficult to think very highly of myself.

Over the years, I've been called stupid, fat, ugly, and lacking in common sense. And that with my attitude, "it's no surprise [I] don't have many friends".

If it was just a random person telling me these things, it'd be easy to shrug it off. But when it's your own mum, it's a bit rough.

Still, I'd like to think that I'm not any of those things, and that it's just that my mum and I don't see eye-to-eye.

Sunday, 6 July 2008

What's the right thing to do?

I wish the answers to all decisions were obvious.

The decision I was faced with this weekend was whether or not to see a movie with A and J on Friday.

I went; and I think healthwise, it was a mistake. It's put me out of action for the whole weekend. Today, I had to force myself to go out, because if I didn't go out today, I would have been stuck at home for another week until A's free enough to take me out again. Now all my symptoms have flared up: more aching, more joint pain, extreme fatigue, and so on.

But what would have happened if I didn't go to the movie? I wouldn't have been able to catch up with J, and I would have missed out on having a good time. Going to the movie was a great step towards getting over my fear of social situations. So in that way, it wasn't a mistake to go.

And yet here I am, having to deal with my worsened symptoms. It seems like there's no right answer. I can't ever seem to do the right thing. Whatever I did would have resulted in something bad. I went, and so I've had to give up the whole weekend. If I didn't go, I wouldn't have been able to make a huge step towards overcoming my fear of social situations. I feel like these days, my life is riddled with forks in the road where both paths lead to something bad. It's really difficult to stay positive when everything in your life seems to be structured that way.

Friday, 4 July 2008


One of the things Dr S asked me to do is exercise.

Obviously, I can only do light exercise right now. Dr S said I should stick to walking for now.

He gave me a small booklet that has instructions on how to make an exercise planner, and what kinds of exercise I can do.

Basically, I have one "rest" day each week, and for the rest of the week, I have to alternate between aerobic exercise (walking) and resistence exercise (push-ups, and sit-ups, and so on).

I've been fairly good at sticking to the routine so far, and I am a whole one cm thinner than I was this time last week! (Although, I don't know if that's because of the exercise, the diet, or just luck!)

I thought I would keel over and pass out after a 20-minute walk, but I manage it, and I always feel a bit better after exercise, even if it is light.