Bad food

All still well over here. Even despite my recent bad food habits.

Part of my recovery program was a strict (and particular) food diet. In fact, it was probably the biggest part of my recovery - you are what you eat, right?

If I'm ever feeling like my level of health is getting dangerously low, I revert back to that diet. That is, gluten-free, sugar-free, dairy-free, preservative-free, additive-free. And I wasn't allowed to eat random things like tomatoes (allergenic), potatoes (too high in carbs), oranges (allergenic), either. What could I eat, then? You ask. Lots of things. Basically it was a Stone Age diet. A small amount of meat, and lots and lots of veggies.

Eating a variety of raw veggies is astoundingly good for you. Eating well and healthily gives your body its best chance at fighting off disease. Will it treat CFS on its own? Maybe, maybe not. But it sure as hell helps.

Climbing high

Goodness, it's been close to six months since I last posted here. You won't believe what I've been up to: rockclimbing.

Yes, a strenuous, demanding physical activity has become my weekend pastime. Incredible for a person who used to be drowned in fatigue, isn't it?

Speaking of which, I'm unsure if I can still consider myself a Chronic Fatigue Syndrome sufferer. Life is chugging along generally as it used to pre-CFS. Sure, I'm a little more cautious with my energy, and take great care when I fall ill. Other than that, I seem to be normal.

So, where to now? Do I continue to post here? A CFS blog written by someone not suffering from CFS seems a little reduntant. But perhaps I should post occassionally; if for no other reason than to update any straggling readers about my condition.

I may struggle to find stuff to write about - so if you want me to elaborate on any part of my recovery, sing out. I will try my best to remember. It has been a long journey.

Exercise results

Wow. This exercise stuff really works. I've done a tiny bit every day, and it's made a difference. I thought I would be more tired, but actually I find I have more energy. And for ladies, this might be useful to know: it's really helped with period pains, just like the doctor said it would.

All I do is a bit of skipping and weights each night (I don't have weights, so I just used heavy books). I find doing exercise at home is much easier. This way I don't waste energy getting to a gym, etc.

I know just the idea of doing exercise seems ludicrous to those of you who are really unwell. But just remember I'm a fair way along now, and when I started this treatment plan I started small. Very small. I wrote a post about the specifics of my exercise a while ago here.

Apparently there are a bunch of medical conditions that can be cured with diet and exercise alone. It's really worth a try.

Uni preparations

Now that I'm feeling much better, I'm returning to uni. This year I'll have to write a thesis for my masters course. Scary stuff. At times I still wonder if I can do it, but I've done a few things to prepare myself.

First, I enrolled for a three-quarter load. I'll only be doing three subjects this semester. That should give me a bit of room.

Second, I've found a bus route that'll take me to uni. In the past, I've just walked to uni, but I think I have to be realistic. Uni is taxing and I don't want to overestimate my fitness. Either way, I've been trying to get used to walking more, just in case.

I can't prepare for everything, though. The reading materials haven't been printed (so everyone will be behind with reading already), and I found out this afternoon that I should go into uni to sign up for classes tomorrow morning.

I busted my boiler today thinking I'd have tomorrow to rest it off! Oh well, c'est la vie!

Cruising with CFS

My boyfriend finished uni recently and wanted to go travelling badly. And, he wanted me to come.

When the time came to book flights, I was getting better, but not fit enough for backpacking. So, we booked a cruise, which we went on in January.

For anyone with limited mobility, it's the best way to travel, I reckon. The service goes above and beyond, and every single person is looked after so well. You can even list yourself as a person with mobility limits. (And no, you don't need to provide medical evidence, or anything like that.)

I guess what I'm trying to say is, if you want to go on a holiday but can't handle the flights, look for a cruise leaving from your city. You won't regret it, and you might even have an excellent time. I certainly did.

It's good value for money too. Think about it, your money pays for food, accommodation and travel. I highly recommend it if you have CFS and you're looking for a way to go on holiday without busting your boiler.

Less is more

I'm finally at the end of a very busy week (by my current standards, anyway). I rescheduled today's nurse appointment, and I'm really glad I did. I really needed today off.

I've come to realise when it comes to "doing stuff" (for lack of better words), less is more. This weekend I enjoyed my friend's birthday party a lot, and I don't think I would have enjoyed it as much if I knew I had to save some reserves for driving myself to a nurse appointment today.

In the recent past, I've struggled to find a good reason to keep my activities in check, other than that I just can't handle it. Knowing I'll have a better time at fewer activities will make it easier to keep my activities at a manageable amount.

After all, what's the point of going to any social events if I'm going to be a worried sour-puss the whole time? It'll be a better use of my time if my thoughts aren't fixated on having enough energy for the next event.

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.

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.