Sunday, 29 June 2008

No sugar, no dairy, no apples, no oranges, no wheat...

Guess what? I made it to my friend's 21st! I was an hour and a half late, and I only stayed for about two hours, but I think she really appreciated that I made the effort to go.

My friends were so supportive too. They let me sit down, and it was really nice to catch up with them. They made it really worthwhile for me to go.

The only thing was, I couldn't eat much of the food. It was all right, because I'd had dinner first, but that brings me to what I wanted to talk about in this post.

As some of you know, I saw a new doctor last week, and one of the things he told me to do is avoid certain foods. I can't eat anything that contains sugar, milk, yeast, wheat, tomatoes, potatoes, apples, oranges, and the list goes on. He said I should avoid additives and preservatives as well.

That makes it difficult to find a variety of food to eat. My dinners are awesome: tonight, I had chicken, sweet potato and greens. But other than replacing the chicken with other meats, and the sweet potato with rice or buckwheat pasta, I can't think of anything else to eat. Sauces and curry pastes make a lot of difference, but most of those contain additives and preservatives, which I'm not allowed to eat.

The hardest thing is finding snack foods. I've been eating rice cakes, but they taste like cardboard. I'm going to have to keep searching for some good sugar-free, gluten-free and dairy-free cookie recipes that don't contain apples!

Saturday, 28 June 2008

This is not good for my anxiety

I had the worst night ever.

A went out with his friends. I was doing all right at home until one of A's friends rang me to say that they lost him. I tried ringing A and I got no answer, so I rang his friend back, and someone different picked up and said they hadn't found him.

After that, every time I rang him or his friends I got no answer. I kept imagining the worst. Like he got mugged, or got so drunk he passed out somewhere without his friends noticing. Or he was picking someone up and his friends didn't want to be the ones to tell me. Or he hurt himself badly and his friends didn't want to tell me about it over the phone. And then I started thinking about how I would cope without him around.

I ended up getting three hours of sleep, and spent most of the night balling my eyes out. I woke up at 6.30 am and started balling again. All I could think about was how when A left, I didn't even look up from what I was doing.

I don't suppose any of his friends would understand why I felt as bad as I did. When you've never been this emotionally invested in someone before, it's difficult to understand. A isn't just my boyfriend, he's my best friend, and my carer. Most of all, he's my family.

After all that it was just a stupid reason that he got lost, and none of his friends even bothered ringing me back to tell me they'd found him.

I have a 21st to go to tonight. I've been saving up my energy all week to go to it, and now I don't know if I'll even be able to go because I got so little sleep last night and my body's drained from being both miserable and stressed.

Thursday, 26 June 2008

Tips: Reading

Dr S gave us a small pile of reading material. I just finished reading a booklet about exercise, so I thought this would be a good time to talk about reading.

A lot of people with CFS have trouble with reading. There are times when I can't read, but in general, I think I'm doing better with reading than most other people with CFS.

For anyone who doesn't know what it's like to try to read when you have CFS: Imagine you've been studying all day, every day, for about a week. You're at that stage where you're starting to go cross-eyed, and you can't cram any more information in your head. On a bad day, that's sort of what it's like for me when I read the first few words on the page.

So what can you do to improve your reading? Start off with something easy that you know you'll like. I started with a Harry Potter book: it's an easy read, and it's entertaining.

Then I started reading Africa Geographic. It's a wildlife magazine (a topic I'm passionate about), and the articles are a good length. The great thing about magazines is that the articles vary in length; so if you're having a good day you can read one of the longer articles; and if you're having a bad day, you can read one of the shorter articles.

Now I'm reading a book called From Fatigued to Fantastic by Jacob Teitelbaum (who is a doctor). If I don't understand something in the book, I just keep reading. I think it's beneficial to keep my mind moving.

Finally, get comfortable before you start reading. You'll find it much easier to read when the rest of your body is relaxed!

Tuesday, 24 June 2008

My first consultation with Dr S

I had my first consultation with Dr S yesterday, and it went well.

He has a different approach to treating CFS, compared with my other doctor, Dr D.

My consultation with Dr S was two hours long. The whole thing was like a biology lecture, and it'd be very difficult to condense it into one post. I'll post the basics of what we found out in this post, and if there's anything that needs explaining in more detail, I'll do it in other posts later on.

So, like I said, the consultation was two hours long. I had to fill in a form listing my symptoms, past illnesses, current medication, and things like that. (The clinic mailed the form to me a week before my consultation.)

Dr S looked at what I'd written down on my form, discussed it with me, then did a physical examination.

He came to the conclusion that I have CFS, and in my case, it involves mitochondrial problems, a magnesium deficiency, a vitamin D deficiency, lymphatic congestion, and he'll find out more when the blood tests come back.

For now, he's given me a bunch of pills to take, and I have to avoid certain foods that'll worsen my condition.

Later on, I'll probably need lymphatic drainage and MORA therapy. The standard program is 10 weeks long, although each patient is different, so the length of my program (or the amount of time it'll take to treat me) depends on my blood test results.

Tuesday, 17 June 2008

The Black Mamba of chronic conditions

I think part of the problem of how CFS is perceived by people is in its name.

The name "chronic fatigue syndrome" is misleading. It makes it sound as if fatigue is the only symptom, and that couldn't be further from the truth.

Here's a list of symptoms, taken from a fact sheet made by the ME/CFS Association of Victoria:

· Persistent or recurring, unexplained mental and physical fatigue that substantially reduces normal activity levels.

· Post-exertional malaise. Following physical and mental exertion there is a worsening of symptoms that may be delayed 24 hours or more and recovery after activity is slow.

· Dysfunctional sleep. Unrefreshing sleep, inability to fall asleep, excessive sleep, frequent awakenings, restless legs, abnormal sleep rhythms.

· Pain. Burning, aching and shooting pain in muscles and/or joints, headaches of a new type and severity, widespread tenderness.

· Cognitive problems, e.g. brain "fog"; problems with processing and recalling information; difficulty with finding the right word, reading, writing, mathematics and short-term memory; losing track of things; forgetting names; disorientation; inability to concentrate on more than one thing; trouble with decision-making.

· Light-headedness on standing

· Shortness of breath with exertion

· Extreme pallor

· Palpitations

· Disturbance of balance and clumsiness

· Muscle twitching

· Sensitivity to light, touch and sound

· Nausea

· Gastrointestinal and urinary problems

· Sore throat

· Tender lymph nodes

· New sensitivities to foods, medications and/or chemicals

· Intolerance to temperature changes

· Cold extremities

· Marked weight change-anorexia or abnormal weight gain

· A worsening of symptoms with stressors, e.g. new infection, travel, anesthetic.

I know. To some of you, that might look like a list of small woes a hypochondriac might have. But together, all those things really do have a profound effect.

And I'm really not making it up. I don't know why anyone would!

I think I'm doing a lot better with reading and writing than most people with CFS. But I'm a student of editing and publishing, so reading and writing is my life. Also, I've been working on my reading and writing in particular for months. It's helped so much in keeping me sane.

At the end of the day, it's up to you whether you believe me or not, but either way, those symptoms are a reality for CFS sufferers.

PS This post is titled "The Black Mamba of chronic conditions" because most people think Black Mambas are black, because of the name. Yes, you got it; they're not black. They're called Black Mambas because the inside of their mouths is black!

Monday, 16 June 2008

The trouble with nortriptyline

I think I've decided that I've had enough of the current medication I'm on.

It's causing a lot of problems. I can't go to the toilet properly, it's given me two anal fissures, and I feel like I might be getting a bladder infection...

Yeah, I think I've had enough.

Sorry, if that's too much information. I just had to say it, in case anyone else out there is considering nortriptyline as a treatment for CFS.

Tips: Going to the movies

Anyone who has CFS will know that something as simple as going to the movies can be a challenge.

Finally, I'm at a stage where I can go to the movies without too many repercussions.

Start small: Put a DVD on at home. If you find yourself struggling to keep up with the movie, and find that it's too loud, or the colours and movement on the screen are too much for you; I'd suggest staying away from cinemas for a little while.

When you can watch a DVD with no problems, give the cinema a try. Here are a few tips to make the trip a bit easier:

· Don't go if you have a headache.
· Try not to go on a busy day (e.g. cinemas are busy on Friday and Saturday nights.)
· Give yourself plenty of time to get to the cinema.
· Get someone to drive you to the cinema, and park nearby.
· Eat a meal before going into the cinema, and while you're sitting down and eating, get someone to line up and buy the tickets.
· Choose seats that are in the aisle, and close to the cinema entrance. (Climbing to the back of the cinema in the dark might be a disaster, and squeezing past peoples' knees to get to your seat might be taxing!)
· When the movie's over, stay in your seat for a while before heading off. You may have tensed your muscles a lot during the movie without noticing, and that will have used up some of your energy.
· Try not to choose movies that might freak you out or stress you out!

If you're not moving around very well, you could try going to a drive-in cinema. That way, you won't have to walk anywhere, you can control how loud the movie is, and you can leave easily if you're not doing too well.

Sunday, 15 June 2008

Tips: Anxiety

Anxiety is still a major problem that I'm having, but I'm working on it.

I find aromatherapy helps a lot.

I have a few bottles of essential oils that I use. I think the smell of lavender is very relaxing. Rose really helps if I'm feeling a bit angry. And I have a mixed bottle "for anxiety" that contains lavender, bergamot, ylang ylang and lime.

Every so often, it's nice to find a quiet room, get comfortable and dabble a small amount oil onto my wrists and temples, and just close my eyes.

Sometimes, I dabble some oil onto my wrists when I'm going out. So, if I start getting a bit anxious or panicky when I'm out, I can give my wrists a quick whiff, and the smell brings me back to that quiet room.

It's not a cure for anxiety, but I think it does help. At the very least, the oils have a pleasant smell.

Friday, 13 June 2008

The list of people I can talk to is dwindling

The stupid thing about CFS is that it makes you feel so alone.

I'm really jealous of my friend who's going to Africa. Deep down I know she's just talking about it because it's something she thinks I'd be interested in. But to me it just feels like she's rubbing it in my face. She's not, but it feels like it, you know?

I was going to vent about it on the CFS forum I joined, but I couldn't. I was afraid I'd get told off for seeing things negatively. The truth is, as great as it is to be part of a CFS community, they are, after all, still people. And some people don't know how to sugar coat things, or make other people feel better.

But I did smile a bit when I started reading a thread called "The dumbest 'cure' suggestions". At least there are some things about my situation that I can still laugh about.

New doctor, Dr S

Big news: I have an appointment with Dr S in a few weeks.

I received an email from a friend of a friend who had CFS and recovered from it within a year. She saw Dr S, so she gave me his contact details.

She said he's expensive, so she suggested that I could look for another naturopathic doctor who bulk bills.

We rang the Australian Naturopathic Association and asked if they know of any naturopathic doctors familiar with CFS who bulk bill. They said they didn't know which doctors were familiar with CFS, and could only give us the names and contact details of naturopathic doctors in our area.

So I'm booked in with Dr S. He seems to be a good choice for a second opinion. He has a lot of qualifications, and he also treats a lot of people with chronic illnesses, and deals with complex diseases.

I'll keep you updated on how the appointment goes.

Thursday, 12 June 2008

Logging my "hours"

A few posts ago I mentioned logging my "hours". It's something a person on an online CFS forum was instructed to do as part of her recovery program.

I decided to log my hours for just over a week, which was fun (and tiring), but I don't think I really discovered anything new.

One thing worth noting is that I got about 10 hours of sleep each night, which is an improvement from the amount of sleep I was getting a few months ago.

Wednesday, 11 June 2008


One of my friends just told me she's going to Africa.

I'm really excited for her, but at the same time it's made me so sad. I'm beginning to think I might have this stupid condition for longer than I thought. What if I have CFS for the rest of my life? I'll never be able to go travelling like I used to again.

I'm so glad I didn't listen to the people who said "don't do this" and "don't do that" when I went to Africa on my own. If I'd listened to them I would have regretted it.

Anyway, best not to dwell on things that make you feel bad, eh? Talk later.

Tips: Sleeping

I'm going to start a tips section. It'll just be a list of posts with tips on dealing with CFS/ME. I hope any people with CFS who stumble across this blog will find it useful. There aren't many Internet sources out there that have advice on dealing with symptoms.

In the book I'm reading, the author believes getting eight hours of solid sleep really helps CFS sufferers. The trick is getting eight hours of deep sleep.

The small things I did to help me sleep well have improved my sleep.

The first thing I did was get a sleeping mask. I never slept with sleeping masks before, but I've found it much easier to get to sleep in complete darkness.

The second thing I did was get a lavender heat pack. I put it next to my pillow at night, so I can smell the lavender when I lie in bed. It's a really pleasant smell that helps me relax.

The third thing I did is read for half an hour in bed before sleeping. I know this is difficult for most people with CFS. Don't read anything too "heavy", I find even reading a magazine article will help. I'll make a post later with more tips to improve your reading.

Not everyone will be able to do the fourth thing. I'm on antidepressants that happen to help with sleep. I used to take half my dose in the morning, and half my dose at night; but now I take the whole dose at around 8 pm. It makes me groggy and it's much easier to fall asleep at a reasonable hour.

The last thing is, try not to drink too much water just before going to bed, or you might have to go to the toilet in the middle of the night. This'll make it more difficult to get eight hours of solid sleep.

All right, I hope that helps.

Tuesday, 10 June 2008

My drugs

We forgot to pick-up the rest of the pills from the chemist the other day, so I only had enough pills for half my usual dose last night... Today's going to be rough!

This is probably an apt time to explain the treatment plan I'm on explicitly.

My doctor's theory about CFS is that something in the virus I got initially did something to my brain. The virus screwed up the connections between my brain cells, so my brain's telling me that my body's experiencing pain, when there's no reason for it. (My doctor explains it with more medical terms!)

What the drug does is try to fix the connections between my brain cells. The drug's called nortriptyline, which is a tricyclic antidepressant.

In short, I'm on antidepressants, but I'm not being treated for depression.

And yes, antidepressants are sometimes used to treat things other than depression. I'm not just in denial.

My doctor is a specialist in internal medicine, and specifically in chronic fatigue syndrome and fibromyalgia. He says he's cured a lot of people with CFS with this drug, and generally, people are cured within three to six months. It's been about seven months since I started this treatment. The drug has helped, but I'm nowhere near cured, yet. My doctor says I'm a "difficult case". Let's just hope the drug starts being more effective soon.

Sunday, 8 June 2008

The Mind Body Spirit Festival

When someone's telling you to "awaken your kundalini and feel the cool breeze above your head", it's difficult not to look at them like they're a hippy.

I always wondered why people would be interested in a Mind Body Spirit Festival.

But I don't have to wonder anymore; now I have a medical condition that doesn't have a proven cure. So, my options are limited, and I can't rule out things that might help tone down my symptoms.

I could deal with yoga, and possibly meditation. But, I'm too pragmatic to believe in things like palm-reading, "spiritual guidance", and finding my "inner self". People who sell things like photographs of "auras" just seem like scam artists to me; scam artists, or just people who are very loopy.

Yes, maybe I am narrow-minded. But even if spiritual therapy does help, I don't think practising it would help me, because I don't believe in it. And I think believing in spiritual therapy is crucial for its success.

Spiritual therapy reminds me of a theory I have about Tic Tacs: A person goes to a doctor, believing he's about to die. There doesn't appear to be anything wrong with him, and tests show nothing. No, he doesn't even fall under the chronic fatigue syndrome/fibromyalgia group. The doctor is out of advice. He grabs an empty pill case, turns his back towards his patient so the patient can't see what he's doing. The doctor reaches into his coat pocket for a packet of Tic Tacs and empties it into the pill case. He re-labels it with some medical mumbo-jumbo, and the patient takes it. A week later, the patient says he feels "cured". In the same way, spiritual therapy only works if you believe in it.

In my case, there's another snag in spiritual therapy. I feel as though "curing" myself in a "hocus pocus" way would fuel the argument that chronic fatigue syndrome is a psychosomatic disorder.

I left the Mind Body Spirit Festival with a lavender heat pack, a bottle of essential oil, and a firmly closed mind. But, at least I gave it a shot.

Friday, 6 June 2008

Interesting posts

I've made a new list of "Interesting posts" in the righthand column.

So, if you want to know what's going on, but don't want to filter through all my posts, you can get the gist of it by reading the most interesting posts.

Thursday, 5 June 2008

Support line

We've been ringing the support line for about three days now, and no one has answered yet.

I keep imagining what it must be like for people who are in a sitation that's worse than mine; people with more severe symptoms and people who are deep in depression. Imagine if they'd finally worked up the courage to ring the support line, only to find that after three days of ringing, no one picked-up the phone?

Monday, 2 June 2008

CFS Society of Victoria Inc.

A and I visited the CFS Society of Victoria today.

They had a small library of CFS-related books, a lot of information brochures, and some past issues of their quarterly CFS journal.

If your CFS symptoms are pretty bad, I wouldn't suggest visiting. We asked if they could recommend any counsellors or doctors, or exercise classes for people with CFS; but they said the best thing to do would be to call the support line. And you can do this from home.

So, pretty much, unless you want to have a look at their library (which is small, but pretty good), just stay at home and call them.

You can also ask them to send you some brochures and information sheets if you're in Victoria. Visit this link:

Here are the two books I borrowed:

Yes, that's my cat's tail in the photo! I'll let you know how I go with the books.

Sunday, 1 June 2008

There are still good people out there!

Yesterday, one of my friends (we'll call him "J") offered to come over and cook me dinner when he found out I was home alone.

It helped so much. I really needed a good experience like this. Another of my friends said a lot of people with CFS develop agoraphobia (fear of social situations), and I think I was developing it.

I'll just have to take care choosing my social events. Hopefully I'll get a good run of positive social experiences. Then, it'll be easier to deal with A's parents.

I'm so thankful I have a friend like J. He was so patient when I was getting anxious about nothing. He even said if I changed my mind and I wouldn't like to see anyone, I could just message him.

One thing that's good about this stupid illness is that it's making it easier to see who my real friends are.