Category Archives: CFS

CFS + PhD = Good.

Some people might have thought I was mad to start a PhD while the Gazelle and I were still anxiously and frantically trying to wrangle his CFS. It’s been three and a half years now of PhD octopus wrangling and I’ve been reflecting on why a PhD and (someone else’s) CFS make a good combination. Or why they do for us anyway.

Firstly, doing a PhD gave me a sense of indulgence. It’s something that I do for myself. I’m not working for the man, I’m working for the me, and thus it’s a strong and active decision in which I come first. My PhD is a sign to the world that I am more than the partner of the Gazelle (does that make me a gazellette?*), more than a carer, I am my own independent valuable person.

Stolen independent woman image…

I have to remind myself everyday that I am not stuck in this job because I need the money (it doesn’t pay that well!) but because I want to be here. Of couse, we’re lucky we could afford for me to do this.

Doing a PhD helped me set some boundaries. I  made it really clear to the Gazelle that if he wanted to enter my office (either at home or at work) he had to ask my permission.  Recently he came into my home office and rearranged the power board…  my tired thesis self couldn’t cope and I ended up in a flood of tears. I think he’s realised why I need that seperation between work and the rest of my life. My office is my space and he has to leave his shit at the door.

The second reason why a PhD works well with CFS is that when you are doing a PhD, like when you have CFS, you kind of isolate yourself from normal active life. I don’t get out bushwalking, climbing, riding, nearly as much as I otherwise would because I have no space in my brain to organise such things and because after a hard weeks work, I like to be at home. And so we’re both disabled in a sense. I’m less put out by the Gazelle’s inability to just pack up and go bushwalking for the weekend, than I would be if I worked my ideal three day per week job.

It’s also been a good combination because, now that he’s finally got a bit more energy, it’s my turn to be demanding. Not that we have a balance sheet listing everything we’ve ever done for each other, but because I’ve put good time and energy into looking after him, I feel much less guilty that I otherwise would have in demanding cups of tea in bed to deal with thesis induced morning panic!

Ahh… A nice soothing cup of tea!

And on final reflection, watching a number of my colleagues struggle to work out how to balance relationships and PhDs, it’s refreshing to finally feel like all that time and effort the Gazelle and I have put into communicating with each other, managing stress, exhaustion and brain fog, is finally paying off. The early days of a CFS relationship were good training for the final push of a thesis!

 

*Interestingly I just looked up the word ‘gazelle’ to see if there was a gender specific version… turns out that Gazelle also means “a beautiful woman of God”… interesting.

Bicycles #2 – It’s electrifying!!

So, we tried the bicycle built for two, it was fun, but not a transport solution for the poor Gazelle.

Next stop was the electric bicycle. Three million cheers! Imagine suddenly having the freedom to go wherever you want, whenever you want. No parking hassles, minimal personal energy input, the wind in your beard and, finally, a way to travel with all of your friends.

Oh electric bike we love you!

The Gazelle bought himself an electric bicycle for about $2,000 shortly after we moved to hilly hobart. I know that that sounds like a lot of money, especially for people who are sick and desperately throwing cash at all sorts of cures, but it was worth every cent. Freedom. On. Wheels.

Electric bike we love you!!!

Someone asked me to write about the pros and cons of the electric bike.

Well, lets start with why it is good for the Gazelle:

  • FREEDOM: he can go anywhere, anytime. I think the battery lasts him about 30km which in very hilly Hobart seems like good going.
  • WIND IN HIS HAIR: for an outdoors man, it’s a relief to be back in the elements. His body gets gentle excercise (while you have to pedal to get the motor going, you do not need to actually use any force, so its really just freewheeling)
  • EQUALITY: we can do stuff together, just the way we like it. We get to meet each other and ride home from work (or, when he was still really sick, we could at least ride the short distance to a friend’s house)
  • NORMALITY: it makes him look normal and capable (the downside of this is that as I struggle some metres behind I look like the trailing incompetent girlfriend. I need a sign that says ‘He’s cheating!!’)
  • CHICK MAGNET: ok, maybe not chicks. But geez, nothing pulls a middle aged man like a young fella on an electric bicycle!
  • HAPPINESS: a number of times as I’ve been recovering from glandular fever, the Gazelle has dinked me on the back of his bicycle. Not only does it mean that he gets to look after me, but as I sit daintily, sidesaddle, we get so many happy looks and dopey soppy faces. Happiness. On. Wheels.

Hmmm and the cons…

  • CHARGING: you have to remember to charge it. If the battery runs out it’s a darn heavy bicycle to pedal around (the Gazelle, organised man that he is has never been caught short)
  • EXPENSE: it is quite a lot of money up front. There are cheaper models, but make sure you get something sturdy.
  • BALANCE: some people with CFS don’t have the energy to stay balanced. I still think it’s worth it, just start slowly. We recently recommended an electric bike to a fella with CFS. His seems energy levels seem worse than the Gazelle’s so balance is more of a challenge, but it seems to be helping his mental health at least.

But really, there are no cons… just do it.  Bite the bullet, rent one for a week, borrow one from somewhere (talk to your local bicycle group). It really is freedom on wheels.

Yes! Bicycling adventurers – CFS and all!

Hello Glandular Fever!

I have a new empathy for the Gazelle and an even shorter fuse for those people who brush of CFS as some kind of laziness that can be cured by the insertion of a little more gumption and a commitment to pull ones socks up to approximately armpit height.

Despite having promised the universe that yes, I did get the message and that yes, I was working on slowing down, it appears that I need yet another lesson. This month’s lesson has come in the form of a bout of glandular fever. I’ve never had glandular fever before and although, somewhat disappointingly, I seem to have missed out on the hallucinations of elephants that some of my friends managed, I have had a swollen gland the size of a golfball. And while I joked that it was simply my brain had become too big and was now taking up residence in my neck, the blood tests beg to differ.

Elephants (apologies for lack of credit to the artist – I can’t find who you are!)

I was so on track. My supervisor couldn’t quite believe that I had managed to stay on target, to the day, over the last three months. Yes Sir-ee, I was going to submit on the 18th of December. Ahem. After three weeks of doing absolutely nothing, aside from rolling around in the sunshine, watching the Olympics (who ever would have thought that synchronised gymnastics could actually contribute positively to the universal balance of sanity), and half heartedly attempting to read vaguely relevant literature, it appears that I no longer will be submitting this year.

But you know what? The most gloriously wonderful thing about all of this is… I don’t care! I’m not getting stressed! FINALLY! I’m learning something! To accept the slow. To accept it, rather than to panic. And you know what? I’m really proud of myself. I’ve actually learnt something over these last few years of living with the Gazelle and Ern. The trials and tribulations have not been for nothing.

Erh, but don’t look too hard for a halo. While I have yet another insight into the incredible strength of the Gazelle, who has survived and thrived not just three weeks of depleted energy but FOUR YEARS, I’ve also suddenly got absolutely zero time for those who don’t ‘get it’. And even LESS time for the people who, despite knowing the Gazelle and I, seem to feel the need to say ‘look after yourself, you don’t want to end up with chronic fatigue’, or ‘oh surely you are over it by now’, or ‘now you be careful, my brother had it and hasn’t been the same for twenty years’. Oh all kindly meant I know, but GAH!

So as I sit here trying to work out how to re-engage with my PhD, struggling because I am an all or nothing person and an hour of work a day just doesn’t work for me, I marvel once again at the tenacity, the courage and the sheer bloody mindedness that kept the Gazelle fighting for his health. Sure, he lost it sometimes into the deep dark hole of Ern, but even then he didn’t let go.

And now, now its my turn to struggle to leave the house. And he is the one who brings me a cup of tea in bed. He is the one who works out what to have for dinner, brings me home movies, and cheers me up with an out of control double chocolate chocolate cake[1].

And best of all, although we still don’t have a car, and I’m just not up to riding my bike… three million cheers because dinking on the electric bicycle (to be blogged about very soon) works a treat!


[1] Not actually recommended as any kind of CFS/glandular fever recovery tool, but the sheer pleasure of being faced with such a dog-poo pile of icing on a cupcake surely helps at least occasionally.

Thank you

This is where I say thanks to all the people who helped me get through the last four years with a pronkless Gazelle.

Thank you. Thank you for believing, for trusting and for never judging. Thank you for offering your advice, your arms, your distractions and your commitment to me.

And sorry. Sorry that I wasn’t able to share more clearly with you the good things in my life. I was struggling to keep my head above water.

Etching by Michael Leunig

One of the most incredible things that always seems to happen in difficult times is the amazing support that emerges. I was particularly impressed with the way in which my mum and some of my friends were able to seperate out the Gazelle and the Gazelle’s illness. Rather than considering him a bad person, they considered him a person with a disease. In his most depressed times mum would ring up and ask  him ‘how is your depression?’ She said if he’d had the measles or broken his arm she’d be asking, and depression and CFS was no different.

Although ALL of my friends were fantastic, there was one in particular who was there not only for me but for the Gazelle. When When I first met the Gazelle I’d had a short string of lovely but inapropriate boyfriends and I’d completely lost all faith in my ability to judge a suitable partner. When the Gazelle proposed a bushwalk with a mutual friend, I convinced Friend Fantastica to come along to.  It was touch and go that trip and as we cleaned our teeth together that night under the stars there may or may not have been a bit of ‘oh my hand is so cold’ sneaky hand holding going on (nothing says romance like a mouth full of toothpaste!). Indeed, the Gazelle took it as a good sign and celebrated by sleeping outside my tent in the open air with his smelly bushwalking shoes as a pillow…

Anyway, not being one to rush into these things anymore I refused to progress our relationship past clandestine moonlit handholding until Friend Fantastica had given him the nod of approval. Obviously she did so and I think we will both be eternally grateful (in all honestly, I would have abandoned him had she thought him not for me).

But what makes me even more grateful is that not once. NOT ONCE, in the whole 6 years has she ever stopped backing him. Indeed after a particularly fateful event in which the Gazelle’s wiring managed to completely short circuit and I had to boot him off to his parents house for a few nights, it as Friend Fantastica who had the courage to call him and talk him through it. You know who you are dear and we are both eternally grateful (which means you’re now in two eternities of credit!).

It was that courage displayed by friends and family to get things wrong, to intrude into our lives in sometimes elegant sometimes elephant ways that has kept us sane, laughing and getting better. Of course, sometimes I had to ask for help… but that is another post and, coincidentally relates rather closely to my PhD… expect a long one!

‘Slow down and ye shall prosper’

I’m sure some wise sage is saying something to that effect somewhere on a mossy boulder in some isolated kingdom. And that somehow they have convinced the universe that I need to be repeatedly clubbed over the head with an eggtimer in order to get the message.

Innocent universe about to wield egg timer…

Let’s be honest. I’m a naturally fast person. Or at least I was. Once apon a time I used to be that annoying person who would go to bed and be instantly asleep. I would also be that annoying person who would be asleep and then instantly be awake, smiling, getting dressed and getting on with the day while the Gazelle was still wiping the drool out of his beard.

In fact, once the Gazelle began to recover, the difference in our daily metabolisms became one of the harder aspects of living with someone with CFS. For four years I’ve had to work against my natural rythms. Where I like to decide to do something and then immediately go and do it, the Gazelle has to (and let’s be honest, has always probably had to) plan ahead. If we want to go bushwalking it is not a spur of the moment decision. Not only does have to have energy in reserve he also has to take the time to consider the consequences, determine what commitments he has for the coming week and then act accordingly. He also has to be so much more in tune with the minute rythms of the day and his body. Whereas I think that if you say you will leave at 10 then you DAMN WELL LEAVE AT TEN! the Gazelle just has to go with the demands of his body, which in the bad old days would just blink sleepily (on a good day, bad days would grunt ominously), and insist on another 20 minutes sleep.

Not only that, but I naturally can go from being completely disorganised to be ready to walk out the door in about 15 minutes. The Gazelle takes at least twice that long.

Of course, this is not all CFS related, much of it is just the naturally different rythms of our bodies. Which is fine. (can you see me crossing my arms!). Except that when people have different rythms you can usually compromise. In the case of CFS it means that the speedy gonzales partner always gives in. Which means every day you’re fighting against your natural way of being.

All of this came to a head one memorable car trip when we had dropped off some other friends at various events. It must be noted that the two in question belong to the ‘naturally slooooow’ camp. I had spent the morning getting more and more worked up and enraged and once it was just the Gazelle and I in the car I took the opportunity to vent my spleen. He didn’t get it. His response to my angsting about everyone else being slow? “Maybe you’re just different…”.

Ahem. We may or may not have had to call the fire brigade, the army and the navy to rescue us from an extremely localised flood.

boohoo!

Anyway, I think he got the picture. And I’m beginning to learn the lesson provided by the universe. I’m finally learning to slow down, deal with the spare time I have between 10am when we SAID WE WERE LEAVING and 10.30am when we actually leave. When I go back home and visit old friends, I’m no longer racing from onethingtothenexttothenexttotheothertoohI’lljustsqueezeinaquickcuppateawiththatpersonIoncemetonabus… Instead I calmly race to squease in only those people most important to my own sanity and wellbeing.

I’m writing about this now becuase it is also  something I’m learning in my PhD. Again. And again. And again. I have learnt that…

  1. not everything has to be done RIGHT HERE RIGHT NOW! You’ve got at least three years, you can afford to commit some time to detailed reading on difficult to understand topics and;
  2. you don’t need to explaineverythingin the first paragraph of a chapter. In fact, as any book on writing will tell you, sticking to one key concept per chapter is indeed the smart thing to do! Who’d thunk all those PhD self help books would be so right!!??

CFS is slow. PhDs are slow. Learning is also apaprently slow…

So if you’ll excuse me I shall slowly make my way back over to crafting, oh so slowly and carefully, another perfect PhD paragraph.

Yours Slothily, xoxo

Bicycles #1 – A bicycle built for two…

The Gazelle, talented man that he is, not only was once the pronkiest pronker that ever pronked, but he also rode a bike.

In every day life the humble bicycle was our mode of transport, to work, to parties, to do our shopping… Obviously, when CFS came to play, the bicycle was out of the question.

Aside from the obvious, one of the worst things about the Gazelle’s inability to ride his bike was what it did to me. Suddenly the lifestyle that I knew and loved, and that I believed in wholeheartedly was challenged. If we went anywhere together it had to be in the car. Which meant that I was tied to his weariness and worse, we became seperated from our friends. When everyone else was saying ‘let’s ride together’, we were working out where to park, and tiredly dealing with traffic.

Our first attempt at solving this problem was when the Gazelle was still very sick and we lived in a flat place with good bike paths. We tried a tandem (you gotta try a tandem, CFS was a good excuse to try crazy ideas in search of solutions).

A Bicycle Built for Two…

I was pleased to find the picture above and to note that it is the woman riding at the front. The reason for trialling a tandem was that we figured the Gazelle could ride for free when he needed and I could do the work.

HILARITY.

Picture this. Small me on the front of a tandem bicycle. Remember that tandems are usualy built so that the big person is on the front and the small person on the back. Off we wobbled the Gazelle slightly squashed and me slightly stretched.

The thing about tandems is that you have to work as a team. When coming up to a busy intersection, communication is key. I am a cautious cyclist. I hit the breaks. The Gazelle, likes to speed through, he hit the pedals. I think I probably yelled out something like “Oi! I’m the boss of this machine!” as we narrowly avoided disaster.

In the end the tandem wasnt for us. It’s not so good up hills and it does mean that you have to do everything together. At that stage, the Gazelle just didn’t have the energy to share the load, but didn’t have the self control not to pedal (but for anyone interested in trying a tandem, it’s worth contacting your local bicycle advocacy group. Pedal Power in Canberra hooked us up with one for a week so we could give it a whirl).

Something called Ern.

I officially divorced Ern about 6 months ago.

Ern is the something, the ‘nameless dread’ (that is now named), that the Gazelle and I refer to when he is having a bad CFS day. Ern was the character who took the place of the Gazelle and said awful shitty things, like he didn’t love me, like he had no hope, like he couldn’t possibly make dinner… Thankfully, I’ve not only been divorced from Ern for some months, but I  have also stopped receiving his calls at awkward times, he doesn’t tap creepily at the windows very often any more, and I don’t think even the Gazelle has talked to him for a while.

Judy Horacek – Nameless dread

What I want to write about here is how we banished Ern and how, by naming the nameless dread, we managed to beat him.

It was really important for us to seperate the Gazelle as a wonderful functioning man, and the debilitating illness that threatened to swamp him. Although from the outside the Gazelle’s behaviour was sometimes quite appalling (as can often seem the behaviour of seriously depressed anyones) – I’ll write about depression later), both of us knew that it wasn’t him who was an awful person, it was something we had to fight. So we decided to seperate the Gazelle from the depressed wet blanket of a thing that he became when overcome by CFS. And we named him Ern.

There were times when I got violent with Ern. I swore at him. Hit him on the head with a pillow and told him in no uncertain terms where he should go.

More important than my rage however, was the fact that the Gazelle and I were suddenly on the same side. No longer was it his shitty behaviour against me, it was us against something and together we were a hell of a lot stronger.

Banishment of the dreaded CFS suddenly became a more realistic goal as we seperated out the inherent qualities of the Gazelle from the nameless dread threatening to overwhelm us.

It wasn’t necessarily the main thing that helped to re-pronk the Gazelle, but it certainly played a part. And now, now when he starts to get anxious, when he starts to get tense, tired, tetchy and terrible, I ignore him. I say, ‘yes, you are all of those things, but I divorced Ern and I suggest you do the same’. Tough love yes. But a survival technique that seems to work.