Thursday, August 5, 2010

Bed Bound

With all the recent drug changes and daily wrestling matches with side effects, I have found myself either couch or bed bound. Most days I have struggled to get out of bed before 10am. When I do finally summon up the strength to begin my morning routine, which consists of the tedious task of making my bed all lovely for the day, I'm so exhausted that I often jump back in for another half an hour or so just to recuperate. I used to love getting up all full of energy and make my bed. I hated leaving the house with an unmade bed. I was often known for being one of those organised 'neat freaks'. That was the old me. The new me is often guilty of not even bothering to make my bed. Seeing as it causes me such exhaustion at times, I figure, why bother if I'm only going to sleep in it again soon? Now I don't even think twice about leaving the house with a messy bed displaying the evidence of an obvious fashion fight that morning.

I have a growing 'to do list' which never seems to get any shorter. Some days I can zip through half of it and other days I fail to complete one simple thing. Determined to make progress, lately I find myself getting stuck into my list; fueled more by motivation than energy. I suddenly find myself struck down by a wave of exhaustion, forcing me either onto the couch to watch television or into bed because the fatigue became to severe. Most times I'm just sitting at my laptop chained to my chair because I am too exhausted to do otherwise. It's overwhelming. Often I think to myself how am I going to survive today, tomorrow, the following day, a whole entire week? How on earth am I going to cope? In the moment of a frazzled and overwhelmed state of fatigue, coping with the most simplest of things becomes impossible to comprehend. Like many chronic fatigue sufferers, I grapple with these thoughts on a regular basis.When faced with chronic fatigue and multiple chronic illnesses, suddenly your main focus becomes getting out of bed in the morning. It has to be because sometimes that is all you can do.

I blame my recent fatigue frenzy flare-up on my recent drug trial of arava. Although it is not entirely to blame, I do believe that it contributed in a small way to my downward spiral. Now that I have stopped taking arava I am feeling much better. Well, as better as I can be. I'm not battling the daily yucky side effects, I'm needing less sleep, I'm finding it easier to wake up earlier, (I can now manage getting up before 10am... well some mornings anyway!) it's wonderful. The pain, however, is awful.

I'm currently in the middle of trialing lyrica, my new drug. Lyrica is used to treat nerve pain and fibromyalgia. It is also used to treat epilepsy. Possible common side effects include:

* dizziness
* drowsiness
* coordination problems
* weight gain
* dry mouth
* headaches
* shakiness
* increased appetite
* a spinning sensation (vertigo)
* chest pain
* unexplained happy feelings (euphoria)
* flu-like symptoms
* fatigue
* feeling abnormal or drunk 

I've been taking lyrica for two and a half weeks now and have recently increased the dosage from one tablet a day to two. In regards to side effects things are going great. For the first week and a half I woke up every morning drowsy, dizzy and generally feeling weird; like I was going to topple over everytime I walked around. Those side effects have subsided now and aside from the odd headache every now and then, along with the feeling of being heavily medicated, I basically have no side effects which is a first considering my history with side effects! Regarding the pain aspect, both my G.P. and rheumatologist have high expectations of lyrica. My rheumatologist saying "this might just be your miracle drug" and my G.P. stating "I have many patients who are seeing results". I'm not getting my hopes up though, I've learnt that the hard way. I'm not being negative either. So far, I have only noticed a slight reduction in pain. It's nothing amazing. Looking back, arava did a much better job. My joint stiffness and associated pain has returned with raging revenge, making morning and night times a difficult challenge. The whole reason why my rheumatologist started me on lyrica was to attempt to stop my brain from processing pain signals. Considering that it isn't a drug specifically designed to target the treatment of arthritis this means that it won't slow down disease progression, neither will it help joint stiffness. I'm meant to be starting a stronger arthritis drug next week after my rheumatologist and I discuss which one will be best to try next. Combined with the lyrica I'm hoping it will bring some relief. I can only wait and see.

Drugs aside, fatigue is still an issue because of various other factors (which I discussed with you in a previous post). Some days I lose the battle, but I try my best not to take it lying down.

 

2 comments:

Tiff said...

WOW Emily,
Your posts are still so very interesting and heartfelt every time i read them. You're lucky to have a mum that devotes her time and love to support and comfort you when you need it the most. What would we do without them? Anyway, i think it's a really good idea that you want to encourage others who suffer the same thing. They need all the support and motivation they need right? One idea i came up with is maybe you could organise a group talk session or something and organise somewhere to meet and share experiences or just to socialise with one another. Or later down the track you could right a diary or a book about your condition, I would so buy it too :) love you hunny xoxo

Emily Ruth said...

Hi Tiff :)

I'm glad you're enjoying them, I was afraid that they were becoming too repetitive and boring! I'll be changing things up soon, got heaps of ideas for this blog! Yes I am indeedy. Well most people with conditions like me struggle to get out and socialise so I thought it would be a better idea to do it over the internet and through blogging once I get into the swing of things, I'm still geting used to the whole blogging concept but eventually I'm hoping this blog will be a place to for others to discuss their experiences too. That is such an excellent idea though and it is much better to socalise in person and that is definitely something that I am wanting to do sometime soon, it's just difficult to find people in my area. All the groups that I've found require me to travel a bit. I am writing a book! Infact I'm writing several! Exciting! Thanks for following my blog chicky it means so much to me :) lotsa love xxx

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