Reflections

It's 18 December 2009. Roughly this time last year, I was stressing over the thought of spending Christmas with people who don't like me (i.e., my boyfriend's family). This year, I'm not as stressed, although I do have a niggling fear that Christmas, as usual, may not be a happy one.

But that's not related to CFS. Or is it? Looking back, it seems like this time last year, I didn't talk very much about my physical incapabilities. Perhaps I simply got tired of droning on. But it makes me wonder if now - a year on - my ability to recover completely is being hampered by not my physical capibilities, but not knowing what my physical limits are.

In these past few months, I have been rockclimbing, going on field trips to help with studies on birds, going on weekend-long camping trips, walking my dog, and volunteering at two offices. I wouldn't say I've been inactive in the slightest.

So, how am I not normal? Well, I do ache, though not as badly as before. And I do rest a lot - but wouldn't anyone with a lifestyle like mine?

I wonder if my need to rest can be lessened by toning down on my activities, and my aches can be fixed by eating right (lots of veggies, no wheat, no sugar, no dairy, among other things) - I haven't been strict with my diet.

Maybe it should be my new year's resolution to tone it down a bit and eat well. Maybe after eating well, and not doing things around the clock, I'll have more energy to focus on getting fitter, and ultimately, more 'normal'.

In any case, I've come a long way in a year. All things considered, it has been a great year of recovery.

To tell or not to tell?

Life is generally beautiful. I'm recovering, I think.

There are two mini-challenges facing me now. The first is knowing how far I can push myself. The second is knowing whether or not to tell my new friends about my health.

Because I can more or less do everything a "normal" person can now, generally I can get by without having to say anything about CFS.

But being the idiot that I am, I joined an outdoor club recently. I've made a lot of new friends, but being an outdoor club means its activities demand a reasonable level of fitness.

This means I don't always perform as well as the others, and I can lag behind on walks. I think this is reasonable given that not very long ago I could barely walk from my bed to the toilet. But how do I explain that to people who ask why I'm not walking faster? And is it appropriate to explain?

I'm reluctant to mention "chronic" and "fatigue" in one sentence. There's just too much judgement associated with the illness. People might ask, is she really sick? Or is she just making it up? I find it far easier to say that I don't want to get into the details, but essentially I was very sick for two years and basically bedridden almost the entire time.

Really, I wish I didn't have to explain. But I suppose it's just part of the recovery process. Perhaps if I continue to look after myself and heed my doctor's advice, a day will come when I won't have anything to explain.

Learn to say "No"

I'm up and running (well, not running; walking) again, although I still feel like I'm running on empty.

Right now, I have no choice but to keep going. My thesis submission date is approaching fast, and my first draft isn't complete. I just keep telling myself I can rest when my uni semester is over.

In the meantime, I've learnt to say "No". Like many CFS patients, I'm one of those over-committed over-achievers; I try to do far too much with too little time. On top of that, I find it difficult to say "No" when people more of me.

But at busy times like this, I simply have to.

Stay the course

Predictably (given my lifestyle of late), I crashed on Friday. Only a little bit, though. I had to leave uni at midday, and as soon as I got home I crashed on the couch and slept until dinner time.

The thing that was scary was that I was aching, and very weak. I put it down to not taking my pills for days (almost weeks), not eating well, and not sleeping enough.

It's not that I can't fall asleep. I just don't have time to sleep. And that's really bad.

I think I need to slow down again, which is what I did this weekend. It was one of the few weekends I've had in months, where I haven't gone out of town. I was supposed to go to my boyfriend's parents' place to help at the farm, but I had too much uni work to do. I think that turned out to be a blessing.

By Saturday afternoon I felt better. I'm still OK today, so I think it was just a little scare... a warning to those of you undergoing similar treatment to stay the course!

Busy, busy, busy...

I did a third weekend of tree planting, and recently my life has suddenly become extremely busy. Uni has become very demanding, and so has my volunteer experience. I've been sleeping three to five hours a night, which I would not recommend.

Given my poor lifestyle of late (including forgetting to take my pills), it is a wonder I am still functioning, and more or less like a normal person. It just goes to show how much I have improved.

I am hoping things will calm down soon.

A year since my first appointment with Dr S

I saw Dr S last week. He said I'm doing so well I won't have to see him for another three months. No doctor appointments, no treatments; nothing.

Of course, I will still have to continue to follow the diet and exercise program, and take supplements.

When I don't take my supplements, I still notice a difference. My head is less clear and I have a little less energy. All this means is I'm not ready to come off my supplements.

That's OK, because I'm not on as many as I was at the start of the program. I imagine the number of supplements I take will just keep dwindling.

By the way, I did a second weekend of tree planting on hilly terrain (and camped in -1 degree weather), and I have pulled up fine.

Conquering mountains

OK, maybe conquering mountains is an overstatement. But I did survive a huge weekend of tree planting in very hilly terrain.

Considering it was a weekend of climbing up and down slopes carrying a heavy bag of trees and wielding a mattock, I think I pulled up all right. What's more, I woke up and started planting earlier than everyone else on both days!

Very happy.

Up and running again

Well, I'm not running, but I might as well be. I have been fostering a rescue dog, and we've been going on three brisk, long walks a day. Surprisingly, I haven't suffered for it at all. If anything, physically I feel... more or less normal.

My boyfriend - who looks after me usually - has gone overseas for 10 days. He has been gone a week so far, and I am still alive, feeding myself, the cat, the dog and keeping the house clean. To be honest, I'm a little proud of myself!

Virus gone

I'm pleased to report I've gotten over the virus I caught the other week. It hung around for about two weeks, but it never got terribly bad. Though, it was enough to knock me around a bit.

In this last week I think I've tried to do too much. I've been trying to do errands I didn't do while the virus was hanging around, and I have been doing volunteer work left, right and centre. I've spent most of the past few days resting. But I think I'll be fine from now.

I think it's a bit dangerous to linger in bed for too long. My joints are starting to feel a bit achey, and I suspect it's partly because I haven't been moving around enough.

Bad luck

I've caught a virus - a bit of bad luck really, but it was kind of inevitable, considering there is something going around and everyone seems to be getting sick.

By a stroke of good luck I already had an appointment booked with my doctor the day I felt it coming on, so at least we got it early. It has been lingering a bit, but my doctor did say it might hang around for two weeks or so.

I'll just have to wait it out. I went away on the weekend to visit my boyfriend's relatives, and I think the trip may have exacerbated my situation, but I'm hoping a few days rest will sort it out. The doc has given me some herbal pills that should boost my immune system, and he's upped my vitamin C and vitamin D. All that should help.

I survived a two day horse ride

You know things are going well (CFS-wise) when you survive a two day horse ride, and someone else does not.

This weekend I took a gamble and went on a two day ride in the high country. By the end of it, everyone else was sore, so I don't think I came out any worse off than the rest. One girl even decided not to ride the second day (although, to be fair, it was a preventative measure for an old injury) - I think everyone was surprised that it wasn't me sitting out.

It helped that I rode at a familiar place, and that the riding operator knew I wasn't 100%. He asked me if I needed a rest constantly. I never asked for one though. I did accept a lift in the vehicle at the end of the ride, when everyone else had to walk down a giant hill - but someone else also needed a ride. So, I think all in all, I can call it a success!

Going well

I've been having a fantastic time volunteering to help with various conservation-related field research programs. It's so great to be able to do this sort of thing again.

I've had uni assignments due this week, so I have been a bit behind with my walks/jogs; naughty... I will have to catch up once I've handed in my final essay.

Something worth mentioning is I haven't had to apply for special consideration for my final assignments this semester. Woo hoo!

Light at the end of the tunnel!

Sorry for my long absence (if anyone is indeed following this blog); I've been moving house, and we only just got broadband installed.

I have been really, really well. A few weeks ago I started going for light jogs -- I say light, because I really end up walking half the time and jogging the other half, but I'm happy with myself considering this time last year I could barely walk a few hundred metres (if that).

Last weekend I went away with a bunch of people and did a lot of walking and driving. I managed to get through the whole weekend without anyone even suspecting there's anything wrong with me. I think that's a sign I'm seriuosly on the mend.

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.

Insulin

Something my doctor mentioned during my last visit is that my insulin is "up".

My first thought was what does that mean? Aparently insulin is "up" in people with type 2 diabetes. It can be treated with exercise and diet alone. So, my second thought was how is that possible, given I'm on what's probably the healthiest diet in the world - and sticking to it?

The answer is I've been slacking off with one part of my treatment plan: exercise, exercise, exercise. Easier said than done, for a person with CFS.

I've been going about it all wrong. I tend to do strenuous exercise (like horse riding, going on long walks, etc) infrequently; when in actual fact, I should be doing less strenuous exercise more reguarly.

My doctor recommended doing exercise at home, so I don't waste energy getting to a gym. He said an exercise bike is ideal. I don't have one, so I'll have to make do with the next best thing: a skipping rope. My doctor said 15 minutes a day should be all it takes to keep my insulin in check. That, and sticking to the diet, of course.

DLU (Disability Liaison Unit)

Anyone studying with CFS should see their uni's DLU (Disability Liaison Unit). Even if it's not called the DLU, each uni should have a similar service.

I had a meeting with a DLU staff member today, expecting to be quizzed about whether my debilitating medical condition is real, because that's generally what happens whenever I ask for official help.

I was pleasantly surprised - to the point of being bewildered - at how much the DLU could help me. Here are just a few things the DLU staff member said she could help me with:
· Note-taking
· Providing a bed to rest in if I have a long gap between classes
· Making sure my classes don't take place at the times of day I feel tired
· Recording classes I miss
· Filling in special consideration and extension forms (saving me a trip to the doctor)
· Informing all my tutors of circumstances.

It's such a nice change having somebody who - after speaking to me for just half an hour - understands my situation and wants to make things easier for me.

Too often, people just don't care and us people with CFS are forced to find our own way to do normal things that healthy people take for granted. It's an incredibly comforting feeling knowing that someone has your back.

Special circumstances for uni students with CFS

I was nervous about returning to uni after a year away from study. Mainly, I was worried about how I would cope with going to class.

It turns out I'm handling two-hour classes fine. The problem is my Friday class. It's a full-day intensive! There are four of these sessions, and I was only told about them last week (after I'd sufficiently badgered enough people, but that's another story not worth telling).

I couldn't imagine myself staying at uni from 10 am to 4 pm. Thankfully, neither could one of my tutors. She figured out a way for me to do the subject: I'll be doing two-hour sessions once a week, which should mean that I attend half the classes for that subject. They're going to let me attend the other half of the classes next semester.

I haven't worked out the admin side of things, but I'm hoping that'll all go smoothly. I'll find out when I go to class on Friday.

My special diet

Here's an in-depth look at the special diet my doctor has put me on. The following foods are not allowed:

· Rye
· Wheat (so, pasta isn't allowed, unless it's wheat-free or buckwheat pasta)
· Wuppertaler (whatever that is)
· Cow's milk (sugarless soy milk is allowed)
· Cheese.
· Butter
· Bacon
· Ham
· Apple
· Grape
· Grapefruit
· Orange
· Pineapple
· Cantaloupe/Rock Melon
· Dried fruit
· Peanut
· Sugar
· Honey
· Chocolate
· Carob
· Aspartane
· Beer
· Coffee
· Tea (except green tea)
· Tap water (I'm getting spring water delivered to my home)
· Mushroom
· Tomato
· Potato
· Yeast
· Bread
· Vegemite
· Peppermint (I had to find an organic herbal toothpaste)
· MSG
· Benz. acid
· Margarine
· Salicylate
· All other additives and preservatives
· Canned food (unless it's fruit with no added juice or sugar).

Sugar is in more or less everything. Juice, cereal, sauces... everything. Food that doesn't contain sugar usually contains wheat, which I'm not allowed to eat either (even soy sauce contains wheat). Basically, I can't eat any processed food. What's left is vegetables, fruit, nuts, seeds, meat and white rice. It's what my doctor calls a "Stone Age" diet.

Also, there are limits on how I can prepare my food. I have to eat about 50% of my food raw (vegetables, fruits, nuts, seeds, etc). The only cooking methods allowed are steaming, roasting or grilling. I can lightly fry veggies if I'm desperate. But I can't use oil unless it's coconut oil or olive oil. And I can't eat salt, unless it's seasalt. I have to eat as much organic food as possible, and only lean meat.

Basically, it's a detox diet. But even with all the dietary restrictions advised by my doctor, there's still quite a lot to eat. I can eat all meat (beef, chicken, fish, lamb, kangaroo), nuts (except peanuts), and there's a big range of vegetables available. There's no shortage of food here!

Life is good

Life is all about good management, I find. Lately I made a few small changes and my quality of life has improved dramatically:

· I wake up at 8 am every morning. I sleep during "normal" sleeping hours now, and I'm less tired during the day, surprisingly.
· I study only from 11 am to 4 pm (or 10 am to 5 pm on a long day). In the evening, I wind down so my mind isn't racing when I go to bed.
· I say no. Last week a lot was going on in my life. I managed to say no to additional stresses, and it has done me a world of good.

Food desensitisation

My latest series of nurse visits have been "desensitisation treatments" where the MORA machine is used to "desensitise" me from the ill effects of certain foods I've been avoiding.

For those of you who don't know, I'm on a special diet as part of my treatment plan. Basically, my doctor has put me on the healthiest diet possible, to help my body heal. The special diet is one part of a whole treatment plan, which includes taking supplements, exercising, MORA treatments, and more. (See the righthand column of this blog.)

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.

Yay for me!

I think it's about time I report the good news. I'm feeling so much better these days. I've been hesitant to talk about it too much because I don't want to jump the gun here; I think I still have a few months worth of recovery to go. But I really feel like I'm well on my way.

I know a lot of CFS/ME/Fibromyalgia patients get angry when they hear the word "recovery" too since it seems so unattainable, which is another reason I've been hesitant to tell you the news.

And a lot of people have been skeptical about my treatment plan. But look at it this way: I've gotten my mobility back, my independence back (I got a driving license amidst all this too) and all my symptoms are waning. As far as I'm concerned, the treatment plan is making me feel a million times better than I did a few months ago, and that's enough of a reason for me to stick with it.

Bushfires

This is a quick off-topic post about the recent bushfires in Victoria. In Australia there are bushfires every year, but this year the fires were worse than usual. A combination of the drought, temperature (last Saturday it was 47 degrees celsius in some parts of the state) and wind made the fires bigger and faster.

Right now 7000 people are homeless and over 1000 homes have been completely destroyed. Last I heard the death toll was at 181 and expected to climb.

I know economically times are tough, but if you can part with just a little cash to help someone rebuild their lives, no donation is too small:

www.redcross.org.au
www.donateblood.com.au
Sam the Koala photo
www.wildlifevictoria.org.au
salvos.org.au

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.

Walking in the Grampians

I spent New Year's in the Grampians and managed a very short and simple walk to a lookout called the Balconies.

I'm a lot more buggered today than I thought I would be. I forgot that the property we stayed at was so hilly. I think that's what tired me out, mostly.

Still, I was grateful that I even managed the walk; and I was even more grateful there were people there who purposely chose a walk that I'd manage.

This time last year I could barely walk, so even if I did struggle with a simple walk in the Grampians, that's a huge improvement from last year! Happy new year, everyone; hope 2009 is a better year for all of us.