Post-Christmas update

So, I survived Christmas. My boyfriend’s mum turned out to be incredibly nice to me, which made my stay there so much more pleasant than it would have been otherwise. My stomach did get a little upset – I’m still not sure what caused it, but I suspect it was the water. I’ve been living off spring water and I forgot to bring some with me. Anyway, I’m back at home now (well, my second home, which is an empty farm house that belongs to my boyfriend’s uncle), and my stomach seems to have settled.

When I had a quiet moment at my boyfriend’s parents’ place, I asked my boyfriend’s dad why he got fired up about my diet. I asked (in a light-hearted way) if there was any reason why we weren’t getting along. I must have asked in a way that was too light-hearted, because he replied by saying “No, not at all! All’s good on our end of things”. I’d like to believe that’s true, but judging by the way he went off at my boyfriend about my diet, I’m not so sure. But I have little choice but to believe him.

Christmas woes

Christmas is supposed to be a happy time of year, I thought. Since I've had CFS, it's been anything but. Last year, my CFS was pretty severe: I was really fragile, and it was really difficult to move me anywhere, since I struggled with things as simple as walking. So I stayed in the city for Christmas. My boyfriend went home for Christmas and came back on Christmas night, so I did have company for some of Christmas Day, even though for the most part it was a lonely Christmas.

This year, I'll be following my boyfriend home. Given that his parents know what I've been going through, I thought they would be accommodating. Nope. Part of my treatment plan is a very restricted diet, and the plan for Christmas lunch is to have everybody has to bring an unusual food dish.

When my boyfriend rang home to get an idea of what food they have so far - just to see how much of my own food I'll have to bring - he got an earful from his dad about how I'm "not a 12-year-old" and I'm "on this diet by choice", therefore he doesn't have to be accommodating.

Sounds like it's going to be a thrilling Christmas.

Diaries

Keeping a diary is useful. I've been keeping one for the past month or so, and yesterday I read entries from the start of November. I seem to have improved heaps since then - I don't think I would have noticed as much if I hadn't kept a diary.

So I guess I'm saying it might be useful for people with CFS to keep one. Of course, I realise people who are worse-off than me wouldn't be able to, but perhaps when you are well enough it might be a useful progress gauge.

MORA lymphatic treatment

It's probably time for an update.

I'm doing well. I'm getting better every day, I think. And people have said the change is noticeable now, which is great. It means I'm not just imagining that I'm getting better!

I still find that I tire easily, and that if I'm not careful when I'm active, I can spend days recovering from my carelessness - but generally the effects are less severe than they have been in the past.

I think I'm at a stage where it mightn't even look like there's anything wrong with me. (Until you notice I go missing for a few days after a bout of activity!)

I've been visiting the nurse fornightly for MORA lymphatic treatments. I can't remember if I've explained this already, but I might as well explain it again anyway:

The body has two "transport" systems": blood and lymph. Blood has a pump to move it around the body (the heart), but lymph doesn't have a pump. Lymph relies on muscle movement to move it around the body. As you can imagine, most people with CFS have such low energy levels that they can't move around a lot, so the lymph gets clogged up.

The lymphatic system gets rid of all kinds of nasties, so when lymph isn't moving around, it can't be a good thing. MORA lymphatic treatments help unclog the lymph and sitmulate it to move along.

If nothing else, the treatments are very relaxing!

Solving stress

It seems like most people with CFS are reluctant to believe that stress can be a factor in causing CFS - even I was reluctant to believe it, until I visited a psych.

The psych has helped me work on my anxiety, which he says was brought on by lots of stress and family deaths. Sessions with him revealed some great results: my energy levels have improved.

Even though it's clear from my normal doctor's work that my CFS has a biological cause, I think it's safe to say that there was an emotional factor as well - it's all linked, anyway.

Either way, I was open to what the psych had to say, and I think that's the key to getting past this CFS. Being stubborn won't get me anywhere.

Melatonin

I've improved again in the past few weeks, and I think Melatonin can be credited for that.

These past few nights I've been sucking on Melatonin tablets to improve my sleeping cycle. It's worked wonders and I've fixed my cicadian cycle, so I sleep fairly early and wake up fairly early now.

I'm surprised at how something as simple as fixing my sleeping cycle has had such a good effect.

My sixth appointment with Dr S

The plan for the next two months is fortnightly MORA lymphatic treatments until I see Dr S again in early January.

He's given me some remedies to improve my sleep cycle as well. I've been sleeping from about 2 am to 10 am every day. Every time I get my cycle back to a pattern where I sleep earlier and wake up earlier, I have someone over for dinner and they end up staying late, and it takes me weeks to get it right again. This time, I just haven't gotten it back to normal, so apparently these remedies will help me. Dr S said my sleep cycle can affect my progress, so it's important.

Dr S is a great doctor, but sometimes I wonder if he understands the situation fully. He expects that I can take trains everywhere, and that I was going to uni; which is just ridiculous... I don't know if I can be bothered explaining how physically and mentally exhausting CFS is again, and I don't know if you can be bothered listening again, so I won't go on; you know the story.

Anyway, he did say he shouldn't get complacent just because I don't complain a lot. I'm on a new type of medication that should help my gut bugs. I hope that encourages more improvements.

No-win situation

Sometimes I find CFS patients are in a no-win situation when it comes to chatting to people.

On the one hand, if we start talking about the horrible things CFS patients have to endure, we're accused of complaining or wallowing in self-pity. On the other hand, if we don't mention any bad stuff at all, everyone just assumes there's nothing wrong with us.

Sometimes I find it really difficult to strike a balance. Thankfully, my important friends seem to understand the situation.

Moderated comments

I'm really glad I decided to moderate comments. Those of you who are real people reading my blog out of interest needn't worry: I'll approve your posts; the ones I'm rejecting are the comments that are just advertisements.

The comment I just received for moderation is an example of comment advertisements. I didn't approve it, so don't bother looking for it. Also, it had some spiel at the beginning about how anxiety is responsible for making people tired. That might be true, but I get so irritated with suggestions that CFS is simply being tired. Those of us who have it know there are plenty of other symptoms to deal with.

Rant over.

Breathing exercises for anxiety

I've been umming and ahhing about whether I should reveal this: I visited a psych the other day.

When I visited the psych, I wasn't looking for answers to the cause of my CFS. I have issues with my divorced parents that haven't been resolved, and now that I'm not well, I've had too much time to dwell on it. So I figured, this is a better time than any to seek advice from someone who can be objective: a psych.

Anyway, he came to the conclusion that I'm not depressed, but my anxiety and stress levels are quite high. He said that the way people have responded to my CFS (negatively) has triggered feelings I felt when my dad left home. As a result, I'm getting stressed by these triggers.

The psych explained stress in biological terms: apparently, the ANS (autonomic nervous system) is constituted of the SNS (sympathetic nervous system) and the PNS (parasympathetic nervous system). When a person gets stressed by something, what kicks into gear is the SNS, which promotes a fight-or-flight response.

Basically, I'm constantly in flight-or-fight mode, which is really sapping my energy.

To get my SNS under control, the psych taught me some breathing exercises, because breathing is something that concerns both the SNS and PNS.

I have to breathe slowly and deeply, using my diaphragm more than usual. Once the breathing is regular, I have to think of a happy thought. I've tried the exercise a few times this week, and it's really helped, which is why I decided to post about it here.

On a side note: the exercise reminds me of the spell in Harry Potter called expecto patronum, where they have to think a happy thought!

Blood spinning

It sounds gross, I know. In reality, it's not so bad. The new kind of MORA treatment I'm getting is called blood spinning: the nurse pricks my finger to get a drop of blood, puts it in a special container that sits on top of the MORA machine, and presses the start button.

The theory behind blood spinning is that healthy blood spins in a certain direction and diseased blood spins in the opposite direction. Blood spinning encourages the blood in my body to spin in the healthy direction.

Okay, I'll admit that I don't understand it fully, but that's the gist of it.

Milestone weekend

Today, I went on my first solo excursion and tram ride in over a year. Once I reached the city, I walked for about a block, and hopped on the tram back home. The entire trip took two hours in total, and I think that was a good length; any longer and I would have suffered more for it.

I think the trip was really good for my confidence. All this time, I've been afraid of getting stuck outside, like I did the last time I tried to go out by myself. I ended up having to wait for A to finish work and pick me up, because I couldn't walk any further. Thankfully, it didn't happen this time.

My fifth appointment with Dr S

This must be a pretty boring blog. Really, all I do is update you about what goes on in my doctor's appointments. But that's really all there is to tell. After a few months, even whinging about CFS symptoms and the issues that come with them gets tiresome!

Anyway, here's my update: I got good news from Dr S this week. He said I've improved the most out of any patient he's seen in a while! (Yes, I win! Better start writing my acceptance speech for patient of the year...)

Dr S said the blood test results that were elevated when he first tested me are within the normal range now. My vitamin D levels are well within the normal range now too - big achievement considering I had the lowest level of vitamin D he'd ever seen. And the level of toxins in my body has decreased. So, good news all around.

However, I'm still tiring easily and quite dependent on my supplements. I've noticed that if I miss a dose of anything, I'll feel the effects of it the next day. Dr S and I agree I still some way to go.

So, I have to keep taking anti-candida medication (along with my other supplements), and I'll be having a new kind of MORA treatment aimed at treating CFS symptoms (in the past my MORA treatments have been aimed at treating my liver, I think - kind of ironic, since I'm not a heavy drinker).

After five of the new MORA treatments, Dr S will review me again. He said that the next time he sees me, he might have to use the MORA machine to desensitise me to certain types of foods, since I appear to be allergic to some foods still.

Back to the doctor

My appointments with my doctor have resumed. (He's been away for the past month.)

Last week I had another BIA (Bio Impedence Analysis) - a test that measures how healthy I am on a cellular level. The results were mixed, but positive generally: my fat levels have dropped, my muscle mass has gone up (although there's room for improvement, my water balance is good, but the general health of my cells has dropped. The nurse said this could be because I've had a few colds and an infection recently.

Since my last post, I caught three colds and had a bladder infection. It's set me back a little, but now that my doctor's back, I hope things start looking up again.

My first weekend away in a while...

I'm really doing a lot better these days.

I went away this weekend to A's farm for the first time in a long while. I was more active than I expected to be.

I went for a short horse ride, a few short walks, and drove the four-wheel motorbike around to feed the sheep and explore my favourite part of the farm. I expected to spend the whole time indoors; I surprised myself.

Now I feel like how most people who don't know anything about CFS expect me to feel - most of my symptoms have toned down; fatigue and tiring easily are my main symptoms now. I still ache more than a normal person should after even light exhertion, but I find it wears off quicker now (in a day, as opposed to in a week).

It's amazing how much my quality of life has improved, simply from being able to stand for longer periods of time, and walk greater distances.

ME description

Someone posted this description of ME (myalgic encephalomyelitis) on an ME/CFS forum today. I think it's a pretty good description; it starts off with a lot of medical mumbo-jumbo, but the list of symptoms is pretty spot-on:

"Myalgic Encephalomyelitis (ME) is a chronic, inflammatory, primarily neurological disease that affects the central nervous system, the immune system, the cardiovascular system, the endocrinological system and muscoskeletal system. It can cause a wide variety of symptoms, including changes in sensory tolerance, visual problems, exertional muscle weakness, difficulties with co-ordination and speech, severe fatigue, cognitive impairment, problems with balance, subnormal or poor body temperature control and pain."

The full article talks about ME sufferers turning to complementary and alternative medicine for relief. The article's author seems to advocate pharamaceuticals though - I don't think I like pharmaceuticals as much the article's author does; I'm off pharamaceuticals completely now, and I seem to be doing a lot better... Here's the link to the article: http://www.medicalnewstoday.com/articles/120639.php

My fourth appointment with Dr S

I'm doing well.

I caught a cold or virus or something this week, so that's been a slight setback, but I think it's going away.

I've started the next phase of my treatment plan, which is treatment for parasites. I'm taking anti-candida medication as well still.

The clinic is closed for the month of September (they warned us a while ago that it would be closed), so my treatments and appointments will resume in October. I've been booked in for another MORA treatment, and three lympathic drainage therapies, and another appointment with the doctor in mid-October.

All in all, apart from the virus, it's still going well and I am improving, so that's good.

Apparently I'm one of the clinic's sicker patients; I never knew how "bad" I was until lately - even with so much improvement, there's still some way to go. But at least I'm moving along.

My seventh MORA treatment

I've had a good week.

My aches and pains are still on and off; but the good news is that they're more off than on these days.

I'm sleeping better.

My mind is clearer (I read the book Voyage of the Dawn Treader in one day! Granted, it's not a very challenging book, but still, you'd be hard-pressed finding another person with CFS who can finish a book in a day).

Also, I'm walking well around the house. I noticed that it's easier for me to get up from a chair these days. Because it used to take so much effort for me to get up from my seat, I used to plan what I was going to do every time I got up: I'd plan to go to the toilet, get a drink, pick up a remote, get a pen from the table... and invariably I'd forget to do one of those things, and it was a giant pain in the ass to have to get up again. Now I find it's not as big a deal if I forget something, because I can just get up again, with less difficulty than before.

Of course, I still have limits. If I had to get up from my seat five times in fives minutes, I'd probably tire myself out. My stamina is still poor, and I still suffer from sensory overload (ie. not being able to think with too many people talking at once).

But the nurse I've been seeing said I have to patient: I've been sick for a long time, so it's going to take a long time for me to get better. She said it's exciting that I'm improving already, and that I should remember not to push myself too much.

My sixth MORA treatment

This week's MORA treatment was much the same as last week's. I had the treatment, and the nurse asked me her usual questions.

I asked the nurse about the issue with my feet today. Since the onset of my CFS, I've had tender soles. I described it to the nurse as feeling like I've been walking on rocks with bare feet for hours. She asked me if the pain is in a specific place, or across the whole foot; I said the pain was across the whole foot. She said it sounds like hypersensitivity. When she asked the doctor about it, he increased my dose of vitamin B complex.

After the MORA treatment was over, the doctor and the nurse stuck two little stickers with tiny balls underneath them to two points on my arms. Apparently they're meant to prolong the effects of my treatment.

I guess what most of you would like to know is whether or not I'm feeling any better. On the whole, the answer is a definate yes. My muscle strength has improved, my energy has improved, and my sleeping has improved. Having said that, I'm still not very independent, small tasks are still taxing for me, and I'm not really functioning as a normal person should. But the important thing is that I have improved. (In a way, I hope that makes people realise just how debilitated I was a few months ago.) I'm still feeling a bit lousy from the colon cleanse, but like I said last week, after the colon cleanse is done, I hope I'll start picking up even more.

Why CFS is thoroughly frustrating

One aspect of CFS I find the most frustrating is not people who don't understand what CFS is, but people who almost resist trying to understand what CFS is.

I don't expect anyone to spend hours reading about CFS on the Internet. What I can't stand is when people ask: "What's wrong with you, exactly?" over and over again. And when I say "I have chronic fatigue syndrome" and explain it to them, they dismiss what I have to say, and ask me the same question again in a few months' time! It's thoroughly frustrating. At least five people I know are regular culprits of this.

One that I'll call "H" is the most exasperating to deal with. She cares about me, but she doesn't seem to realise just now debilitating CFS is. She seems to think that I'm just depressed. And that is the most annoying attitude anyone can deal with.

Not only do I have a mysterious, invisible, debilitating disease; I have to battle with people who think I'm just depressed as well.

Update, and my fifth MORA treatment

I vomitted a few more times after publishing my last post, however, in the past four days, I haven't vomitted again.

My vomitting episode was a bit of a setback in my quest to rid myself of CFS, but I think I'm on the mend again. My aches and pains have toned down a lot, I have some energy (though not as much as when I first started this treatment yet), and most importantly, I'm starting to sleep well.

Dr S gave me a bunch of remedies to help me sleep better. Today, I woke up at 9.30 am for the first time in weeks. (I've been getting up between 11.30 am and 12.30 pm -- shocking, I know!)

Still, I feel the need to rest; I've been spending most of my mornings sitting in bed reading -- rest assured I'm fully awake and I stay in bed just for comfort and warmth mostly! (It's been really cold here lately.) I'm feeling the need to rest probably because my body's weak from the vomitting, I suspect. Dr S said the vomitting could have been due to a virus.

Anyway, I don't feel drained after MORA treatments anymore, yay! My fifth treatment was uneventful. The nurse asked me her usual questions, told me to continue with the treatment as planned, and I'll see her next week.

At this stage, I'm hopeful that once my body recovers from the vomitting and the colon cleanse, there's a chance I might be feeling a lot better. One can only hope!

Third appointment with Dr S

My third appointment with Dr S lasted for an hour.

Dr S and I discussed my nausea and vomitting, and he's taken me off some of the pills that might be causing those symptoms. In particular, Dr S is putting me back on the brand of vitamin D pills I was on before last week (last week when I stocked-up my pills at the clinic, I had to buy a different brand than usual because they were out of the pills I'd been on before).

I'm into the next phase of Dr S's treatment plan now. I'll be taking some medication that will give my colon a spring clean (so I anticipate spending a lot of time on the dunny over the next few days). Also, I'll be taking some medication that will deal with my candida overgrowth. As far as I know, candida is a kind of yeast living in our bowels, and when we have an overgrowth, it's a bad thing.

Also, I should mention that since having a laser acupuncture treatment, my mood has improved. Apparently that's mainly what the acupuncture was for. I've always wondered if acupuncture works; I haven't taken any of my pills in the last two days, and I've been feeling unwell because of my nausea; yet despite all that, my mood has improved, so I'm inclined to believe that acupuncture does work.

Yum cha with some real friends!

I've been feeling poorly these past few days; I've been throwing up, so I haven't been eating much. But I dragged myself out today to go to lunch with some friends. We'd been planning to go to lunch for over a month now, and this lunch was unusual because everyone in the group was able to go.

I'm so glad I went to lunch. This group of friends always make it so worth-while; they've been so understanding about my CFS. It's amazing how much less stressful going out seems to be when people don't treat me like I'm malingering. I don't have to worry that I'm offending them if I look poorly, and I don't have to worry about them saying anything that I might find hurtful. They just accept that I have CFS and try to make everything as easy as possible for me.

For a while I've been quite miserable about losing half my friends, but my other friends really make up for it when I see them.

We went to yum cha, as usual! I couldn't eat anything because of my diet, but I was able to have some steamed rice and green tea. It's funny how most of my friends like yum cha; none of them are Asian, but we've always eaten Asian food: dumplings, yum cha and Japanese food. Funny, isn't it?

Laser acupuncture and allergies?

I had a laser acupuncture session the other day. I felt a bit more relaxed afterwards, so I think it helped.

The nurse tried to explain how acupuncture works, although I must say I still don't understand it fully. She said that from my symptoms, Dr S knows that there are blockages in my acupuncture meridians (lines the run up and down the body), and that by stimulating certain points on the body (with needles, or in this case, lasers) the blockages can be unblocked.

Laser acupuncture isn't meant to hurt. It hurt on my legs, but I think that's only because my legs are quite sensitive because of my condition. It didn't hurt at all on my arms.

Also, I've had an allergic reaction to something in the last few days. I don't think it has anything to do with the laser acupuncture though, because the allergic reaction began before my laser acupuncture session. I'm trying to think of what I might be allergic to, but I can't think of anything. I don't think I've changed my routine in any way, lately.

But I've felt really unwell (more so than usual) these past two days, and I spent most of yesterday and today in bed. I've been itching all over, mainly at night. There are no signs of rashes though. A few times, I've seen bumps on my skin that look a bit like mosquito bites, but they disappear by the morning, usually. I thought I'd just imagined the bites, but A saw one of them, so they can't be imaginary. Also, I feel a bit fluey, and I have a stuffy nose, and itchy eyes. And I threw up earlier today.

I'm quite glad that my next appointment with Dr S is on Monday. I hope he has some ideas about what's happening.

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.

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.

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!

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.

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.

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!

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.

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.

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.

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.

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.

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.

Exercise

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.

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!

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.

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!

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.

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!

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.

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.

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.

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.

Africa

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.

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.

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.

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.

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?

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: http://home.vicnet.net.au/~mecfs/send_info.html

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.

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.

Making slip-covers, and a CFS activity log

I woke up this morning and felt like I'd been hit like a bus.

I guess that's normal these days, but it felt worse today. I know why too: it's because I made a slip cover for one of the dining chairs yesterday. Crouching on the floor to draw the stencil and cut out the fabric uses more muscles than you think!

I only made one cover, because I had to limit myself, since I'm on my own this weekend. It was a good idea to limit myself. Imagine if I'd made three slip covers! I'd feel like I'd been hit by three buses! The cover I made didn't even fit in the end, because I sewed the wrong sides. I always do that!

Someone in the CFS online forum I joined posted an idea for dealing with CFS. The idea is that you write down the amount of hours you spend sleeping, resting, doing high activity things, doing medium activity things and low activity things. It's a great way to track progress (or lack of progress)! I think I'll start with yesterday. In a week's time I'll post my "hours".

There was a young cowboy, he lives on the range...

A's gone to the farm for the weekend. I'm doing a good job at keeping myself busy. I made a plush cat, read an article in Africa Geographic, and played a little bit on the guitar.

The flaw in guitar playing for people with chronic fatigue syndrome is that you have to press on the strings so hard. My left index finger is throbbing now, and I suspect it'll be sore for a few days. Geez, I just can't catch a break! Every tiny thing I do has such annoying consequences!

Even with the throbbing finger, playing the guitar was worth it. I'm no good at all, and since I moved here I haven't been able to play any instruments. But some of you might know that I used to have lessons for playing the drums and viola, and I've played the piano since I was six. So I've missed not being able to play a tune every now and again.

Today I attempted playing Hallelujah by Jeff Buckley, and Sweet Baby James by James Taylor on the guitar... "attempted" being the keyword here!

ME/CFS Society of Victoria

I just tried visiting the ME/CFS Society of Victoria. We went all the way to Burwood, and it was closed.

To get to the building from the carpark, I had to walk up a giant hill. (They really didn't think of their client when they chose a location at the top of a hill!) And on the way back down (after finding out it was closed -- and going down is sometimes just as difficult as climbing up) I had a small kid on my heels, yelling and screaming the entire way down. (The ME/CFS Society is right next to a kindergarten.)

I don't know why the kid and her dad didn't just overtake us; I left so much space for them. Now my head is crowded from the yelling, and my going-downhll muscles are going to be aching for days.

It was a bloody waste of time. It's completely put me off going out again. I might as well just stay at home for the rest of my life and rot.

Email reply

I got an email back from A's dad. The email's tone was neutral and relatively harmless, but in essence he said A's mum has always been that way, and that I should adopt a different attitude and just get on with life.

I am getting on with life, just without them, temporarily. I don't think it's unreasonable to avoid people and situations that are going to make dealing with this illness more difficult than it already is.

What's more, yesterday, my doctor said that I'm a "difficult case", and that the situation between me and A's parents is what's prolonging my illness.

I don't think there's much else I can do. I've already tried everything. I've tried having them over, but A's mum couldn't resist saying things like "Why can't you just accept that you'll have it for the rest of your life, and stop complaining", and "Why can't you just go away for a year and come back when you're fine" and "Can't you be more independent". When people are down, you don't kick them in the guts.

Even when we were just at home, and they were over for lunch, she couldn't resist worstening the situation. I was feeling like shit, so I wasn't saying much. She could have just bit her tongue, but she said "What, so we're annoying you now? What do you want us to do, go outside?" How was I supposed to respond to something like that? You might think I'm exaggerating, but I am really repeating what she said word for word.

I don't expect them to do anything to help me. I just want them to not make it worse. I don't think it's too much to ask. It'd be so easy to just bite your tongue and be neutral, even if you didn't believe the illness exists or is that bad.

Doctor's appointment, May 2008

I had another doctor's appointment today, with Dr D.

Because I've had such a rough month, he's decided to increase my drug dosage again. We're going to go up in steps, increasing by one more tablet each week.

The reason he went down last time is because I got an internal tear, so he's also prescribed some other drugs to soften my stool.

We asked him what his plan B and C are, and he said they're just different drugs that do the same thing the drug I'm currently on does, but in a different way. Since we're making a bit of progress with the first drug, he decided we'll give it a go for another month.

There wasn't an opportune moment to bring up Dr Wright's protocol. I came across Dr Wright's protocol in an online CFS forum; a few people said they followed the protocol, and recovered.

Dr Wright's protocol makes sense to me. He thinks there's three factors that cause chronic fatigue: stress, immune dysfunction, and chronic infection. And right at the start, I was diagnosed with mycoplasma pneumoniae, which is a bacteria on Dr Wright's list of bacteria that can cause chronic infection...

But I'm pretty sure Dr D sits firmly in a different camp. He thinks that chronic fatigue syndrome is brought on by the virus I got initially (I got a bad virus before getting mycoplasma), and that the virus messes up the connection between your brain cells. As a result, your brain tells you that your body is aching, etc. when there's no reason for it to be.

Anyway, I decided that Dr D isn't going to suggest any ways to cope with my symptoms. I've been seeing him for about seven or eight months now, and at each visit, when I ask how what I can do to help lessen my symptoms, his answer is to just take the drugs.

So, one of my awesome friends suggested that I should visit the CFS support centre in Melbourne. I think A and I will be driving there tomorrow to have a look at what they can offer.

This is a good time to tell you guys how fantastic one of my friends (we'll call her "C") has been. She's given me so many helpful suggestions, she's been emotionally supportive, and she's never had any prejudice against the illness (like so many other people have). I'm really lucky to have her as a friend; I feel so much better because of her.

I think I'm having visitors again

I think one thing I'm really lucky with, is how supportive some of my friends have been.

Some of them have asked if I'd be up to having visitors again some time soon. And they said that if I still need a bit of a break from visitors, they'd completely understand.

I think I'm ready to see people again, now. I mean, I probably won't be having people around every night, but it would be really nice to catch up with a few people to see what they've been up to. Especially since it's clear that they're just genuinely interested in coming over.

I've been emailing A's brother about the situation with his parents. I discovered that all I'd like is for them to be a bit more supportive.

If they could be supportive, I'd love to see them. The whole reason I've been put off having people over is because of the hurtful things A's mum said to me the last time she was here.

It's really quite simple. If someone comes to your house and makes the situation unpleasant, would you invite them over again?

A's brother said it'd be great if I could just try to have them over. But I can't see why I should try so hard to make things more comfortable for them, if they're not willing to do the same for me! I've already tried having them over. And they made me so upset that it exacerbated my symptoms! I just can't risk my health for them anymore, until they can at least try to understand.

Email

I sent this email to A's dad this morning.

(I've replaced the names with the code names we're using, for privacy reasons.)

"Hi [A's dad],

How are things going up at the farm? Hope all's well.

I just wanted to say again that I'm sorry [A] missed lunch with you all. I really don't like disrupting his social life, and I would never want to make anyone feel like they're trapped. These are difficult times for me, and even though I have a lot of great friends who have been extremely supportive, I would be lost without [A's] help.

I realise that as his parents you're just looking out for your son. I'm eternally grateful to [A] for sticking around, because I know for sure that not every guy would have. And the thing I find the most unfair and regret most about this whole thing is that I'm putting him through it.

The reason I haven't seen you guys in ages is because I was really hurt by some things that [A's mum] said to me when we had dinner that weekend you (kindly) came down to the city with some furniture. I was just so afraid it might happen again.

If you have any questions about things about the situation that are bothering you, please just pop it in an email or something and I'll to my best to explain it to you. I realise it's a really difficult illness to understand.

I hope that clears up a few things, and I'm sorry that I haven't explained it earlier.

Best wishes,

[my name]"

I really it hope it helps. I hate being in a fight with people.

I think I'll feel better about the situation between me and them if at least one of them begins to understand this all a bit better.

Leaps and bounds

I've moved forward in leaps and bounds today, I think. I hope.

There have been ongoing problems between me and A's parents. From the moment they met me, they've had something against me.

I've tried so hard to fit in. I try to be polite, I try not to get in the way up at the farm, I go on lots of horse rides with A's mum (we're lucky in that horse riding's a passion for both of us), I help out at the farm in any way I can.

But nothing I do is ever good enough. Nearly every time I've visited the farm, A's mum has found a reason to have a go at me. And it's usually uncalled for.

The kind of rudeness I experience is difficult to explain without sounding like I'm exaggerating. It's also difficult to explain it in one sitting, much less over the Internet. So, I'll try, but it might be something you'll begin to understand over time.

Anyway, today, Al's mum rang and said she didn't think it's a good idea for us to get a car together. Somehow it spiralled into an argument about me and A staying in a relationship.

I figured A's mum didn't understand chronic fatigue very well, but I didn't realise just how uninformed she is. Apparently she said that other people with chronic fatigue still go out lots, and she can't see why I can't just accept that I'll have it for the rest of my life.

She doesn't realise that with chronic fatigue, the severity of the symptoms can vary from person to person. And at the moment, I have it pretty bad. At my worst, there were times when I had to crawl to get to the bathroom. Going out is difficult for me.

And I'm surprised that she thinks I should just accept that I'll have CFS for the rest of my life. How could I? As a strong-willed working woman, I don't think she would accept it either.

Anyway, they had their argument, and A rang his dad later to see where he stood in the argument. A's dad did ask if A felt trapped. A replied saying that he feels as though he always has the option to leave. I've always said that if A decides he can't handle it anymore, no one's going to think any less of him. He's already done way more than enough to help.

A also said to his dad that I'd spent the last two days in bed. And A's dad said he didn't realise it was that bad. I think A's dad could be beginning to understand the situation a little bit better. It might be a small step, but it's still a step forward.

But the thing I learnt most from this situation is that I started to see it from a parent's point of view. They're just looking out for their kid. I'm just disappointed that they jumped to the conclusion that I was just doing this for attention so I could "trap" A.

And I'm even more hurt that they managed to taint the views of A's brother, and one of my friends.

Two steps forward, one step back, I guess.

My birthday

Thanks to everyone who sent me birthday wishes. :)

My birthday started off extraordinarily crap, but let's not dwell on the bad stuff. :)

After the bad stuff happened, A took me to Spotlight to buy some supplies for making a couch cover. You get 10% off on your birthday at Spotlight. Woohoo!

After Spotlight, A and I had a quiet dinner in a corner of Shanghai Dumplings. I was happy that it was just the two of us, I don't think I would have coped well with having to yell across the table to talk to other people.

We got home and watched Polar Express, which was a weird, but generally good movie.

A got me a guitar and a lavender bush; both very cool presents! The guitar came with a DVD, so I'll have to watch that and find out how to tune the guitar one of these days.

Some of my friends forgot my birthday. I don't really mind, because I'm bad at remembering birthdays myself. But I did think it was funny, because not long ago, they were complaining about how one of our friends forgot their birthdays. Haha!

I wish one day would go by when I didn't have a panic attack or anxiety problem.

Because I've been so put off by people, all my social interactions happen online in various forums. I joined a cat forum (surprise), CFS forum (double surprise!) and a pet forum that includes dogs and horses.

I didn't ever think someone would get offended by something I said. Here's what happened: somebody on the cat forum bought some toy cats and cushion covers from me, and she posted a photo of them. Someone wrote back and asked if they were easy to make, because she wanted to make one. I said I'd actually be a bit upset if someone copied my work. And she got all annoyed and said "Now I'm annoyed and embarrassed. Thanks a lot!" What did she expect me to say? "Yes, here's the pattern and instruction sheet"? The toys are something I'm so proud of, because it's become a small business despite...

OK, have to end the post here because I'm having another panic attack.

Best CFS article

I found this CFS article last night when I couldn't sleep and started browsing the net on my mobile phone:

http://blogs.news.com.au/heraldsun/robynriley/index.php/heraldsun/comments/cruelty_of_chronic_fatigue/desc/

It's probably the best CFS article I've read. Whoever wrote it described it so accurately.

Definately worth a read if you have time.

Shit day (I know, such an original title for a chronic fatigue blog!)

OK, so today was pretty shit. Last night I couldn't sleep until 3.30 am because it was so cold. When I did fall asleep, I coughed myself awake again.

Usually, I'm groggy in the morning, but today it lasted the entire day. My whole body has been aching, and fatigue is so bad that I feel like I have muscles made of lead.

But the thing that really set me off was a Facebook message I got from one of my cousins. She said "I hope this email finds you better if not already well :)", which is relatively a harmless statement. But I just can't get over how many messages I've gotten lately that are along the lines of "So, I take it you're better now."

I just feel like it's really rude to not have spoken to someone for ages, and then only contact them because they have something you want. You might think I'm being negative, but this is about the only outside contact I've had with anyone for a while.

Partly, it's my fault. I developed anxiety issues that my doctor isn't helping me with, and the only solution I can find is to just take a break from visitors...

And I guess, I was just surprised at how easy it was to just disappear. I mean, my friends have been supportive about this whole thing. But at the same time, I feel as though they've been supportive from quite a distance.

And then I realised, maybe we weren't ever that close after all.

I have a lot of problems to fix.

Let's start over

I've been inspired to give this blog a proper go. I'm going to try writing in it daily. I hope it'll help both you and me understand the illness better.

A lot has happened since my last post in November. I got a cat.

This might sound like trivial news, but I can't express just how un-trivial it is. My cat helped me when no-one else could. Animals don't judge, and they're always around when you need them.

I got upset when some people told me to stop talking about my cat. No-one -- apart from my boyfriend and carer whom we will call "A" -- knew how depressed I got. I cried all day, every day; about nothing, and everything. I felt completely out of control, I couldn't see myself ever recovering from CFS, and nobody was helping me. My cat pulled me out of a hole that was getting very deep and very dark. And I don't think anyone else could have done it. And yet, people were telling me to stop being so happy about my cat. How could I, when I had nothing else to be happy about?

I don't believe antidepressants have improved my situation. Mainly because I wasn't depressed when I got chronic fatigue. To me, that means depression wasn't the cause of my chronic fatigue. And how can you treat something without targetting the cause? It's all a bit hit and miss to me. In any case, I only started to improve when my cat, "M", got here.