"Where there is creativity, there is hope." ~ Donna Karan

Friday, March 1, 2013

The weekend (for a sick chick). Time to stay at home and feel like death warmed up while your friends go out and party. YAYNESS!

A rant. Because sometimes, being sick just sucks.
I've survived another week. Just. Now I have to get through the weekend, and with the way that I'm feeling right now, I know it ain't going to be fun. This being sick business is a tough gig, I don't know if I'm cut out for it anymore. I've had enough. I'm pushed to my limits. I want to give up.
If I was feeling half human, my plans for this weekend would probably involve organising my craft studio, going to church and checking out the Melbourne Scrapbook & Papercraft Expo. But I am feeling far from half decent, so I will be doing none of these things. Yeah, I am pretty pissed off about that.
I'm all out of energy. Ain't got nothing left in the tank. Zip. Zilch. Nada.
I have been working so hard with my exercise physiologist to ensure that I pace myself during the week so that I don't tire myself out, having some energy spare for the weekend. That's now been ruined thanks to a new drug that I have to take.
Why am I popping more pills? Well, my stupid body for some mystifying reason has thrown in the towel, chucked a wobbly of epic proportions and is protesting in the form of chronic migraines.
My symptoms don't really fit with migraines, but I'm going to use that name for now because "headaches" don't come anywhere near close enough to describing how debilitating and hellish the pain really is.
The main side effect of this pain medication? Extreme fatigue, lethargy and weakness. OH, OF COURSE IT IS!
As if dealing with CFS wasn't already enough.
Why yes, I'm frustrated, cranky, and angry. Bone-deep fatigue will do that to you.
And what upsets me the most is that before popping these new pills and before the onset of the horrid headaches, I was managing my fatigue levels well. I felt like I was making progress. I was slowly increasing my exercise. I was getting out of the house more. I could see a glimmer of hope. And now I'm going downhill. Fast. And I don't like it. I am not dealing well with it.
While I'm determined to keep going with graded exercise therapy, progress because of pain and stupid side effects has been stalled. Since swallowing these tablets, exercise is becoming a little harder instead of easier. I'm not impressed. I'm sticking to the bare minimum and that's it. It's looking more and more like things will have to get tweaked in order for me to still cope, because I'm now feeling just as awful as I did when I was working one shift a week.
Despite this stupid side effect, I did go out one night this week and I also foolishly made cupcakes. Usually I can cope alright with that, but apparently on this drug I can't enjoy life every now and then. Well, at least that's how it seems right now.
This weekend will most likely be spent counting down the hours left to survive and wondering what's worse- the profound pain rumbling behind my eyes and raging through my teeth that leaves me feeling like I want to shoot myself, or the overwhelming incapacitating fatigue? I have to pick one, because at this point in time, there aren't any other options.
Bring on the weekend. YIPPEE YAY!
If you're going out on the weekend have a drink for me, please.


Tag said...

I keep looking for you on skype, but you're never on!

My recent relapse of SJS has left me in the same boat, but I'm not so upset, because I thought I would die, so its all a bit of a bonus.

I'm really sick of being trapped in the house though and on Sunday I'm leaving the house for the first time since December for something that isn't related to doctors or blood tests.

The only thing that keeps me sane is chatting with people online. You should leave skype on if you're at the compter--a chat might really give you a chance to vent and feel less lonely. :/

Jane Frances said...

Hi, just found your Blog; I can so identify with the lack of a social life, my fibro was bad over the winter and even my mild yoga set it off and I couldn't get to Church all winter for any services; doctors don't realise how socially isolating it is. I had one telephone counselling session and I didn't have enough 'points' for anymore and I still don't get any benefits even though with fibro and arthritis I struggle with daily living let alone work. But I also suffer with disabling migraines (want to cut your head off types)- had one this morning - I can't take preventative medicine because the side effects always make me sleepy - but I use zolmitriptan or imigran at the onset. They do make you a bit tired/depressed as a side effect but not enough to knock me off course. Anyway thought I'd mention it as these are the only drugs that have been any use for me for migraines. Kind regards Joanna (my blogging name is Jane)

Tamara Epps said...

Wish I could magically wave my wand and take away your migraines (though, if I'm wishing I don't know how I would manage the giant list of symptoms we all have). All I can do is let you know that I understand. I don't get split-your-head-open migraines that often anymore, though my pain meds cause extreme headaches which is bad enough (I've chosen those headaches over muscle pain, but if it was the other way round I would definitely choose the pain). Offering you gentle hugs and reminders that you are not alone.

If you email me your address I can try and get a letter going your way.

Tamara x

Miss Chronically Creative said...

@Tag- I'm really looking forward to chatting with you. I rarely seem to have a good day lately which is why I haven't been on. You're at the top of my priority list!

Miss Chronically Creative said...

@Jane- Hello! It was so lovely to receive your comment, so thank you for that. It really sucks that you can't yet get any benefits- Fibro alone can be very disabling. That must be very difficult for you. And you are right, doctors don't realise, if they did they would have more compassion. It's quite frustrating and difficult dealing with doctors who just don't have a clue.

Thanks for the drug info. I am glad you have found something helpful. The fatigue has really knocked me and I am still struggling to function, but I guess that's bound to happen with CFS. The depression is somewhat manageable, but I think I'll need to look into other options at some point as a preventor has only bandaided the problem.

Miss Chronically Creative said...

Hey Tamara! Me too, hunny. Me too. That's a real bummer about the headaches. You pop pills to treat one thing and end up with another chronic problem and you're left wondering what's worse. Ugh. Can you ever win with drugs?

Sometimes you just gotta laugh. A letter would be lovely. I swear I sent you an email. Nevermind though, I'm off to send another. x


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