Saturday, 31 May 2008

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".

Friday, 30 May 2008

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!

Wednesday, 28 May 2008

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.

Tuesday, 27 May 2008

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.

Monday, 26 May 2008


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.

Sunday, 25 May 2008

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!

Friday, 23 May 2008

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:

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.

Thursday, 22 May 2008

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.