Wednesday, November 9, 2011

Frustrated. Over it. Fed up.




To say that I am frustrated, over it and fed up is practically an understatement. I'm fuming and I think I have every right to be. It's about time I'm due for another rant, I think. An angry potty mouthed post following my last one was not what I had in mind but at times like this I think it's called for.

I'm in pain, I'm angry and I'm human. I need to vent before I explode on some poor unsuspecting soul, and my pillow has been through a lot lately, so here I am, publicly declaring that I am pissed off.
 
I know there are people dying and that there are so many people who are worse off than me- I know, I know, but that doesn't mean that I'm not struggling. So it's been a tough week so far. I should have expected it following two wonderful weeks of being able to do whatever the hell I pleased. Those weeks are rare. They are more precious than gold, more beautiful than diamonds and heck did I make the most of every single minute.
 
I knew that there would be consequences for trying to reclaim my life all guns blazing. This whole "getting a life" thing was a very bad idea. Foolish, even. I should never have played with fire. You would think that after five years I would have this whole chronic illness thing down pat, but I don't. I don't think I ever will.
 
It'll seem like I'm cruising along just fine and then out of left field I'm thrown a curve ball and once again I find myself knocked down face to the ground. For a moment there, I stupidly thought that I was getting better. For some reason my back pain didn't seem to bother me as much for a couple of weeks and I was able to get out and about more. The more better days I had, the more I kept pushing the limits.
 
The pain has now returned with a vengeance. Codeine is barely touching the sides and night times are well, a nightmare.
 
So here I am this week trying to pick myself back up again. Trying to cope with crippling back pain, trying to cope with codeine side effects, trying to cope with interrupted sleep, trying to cope with the tiredness, trying to cope with being medicated out of my mind.
 
Here I am trying to convince myself that it's OK. Telling myself that the fact that I haven't been able to do anything other than watch TV, occasionally blog and lie in bed and read is OK. That the fact that I haven't stepped foot outside since Saturday is OK. That it's OK that my social life is in the toilet. When really, it's not OK.
 
It's not OK that I've had to put up with this pain for seven months. It's not OK that seven months of my life have gone down the drain. It's not OK that I've had to wait so long in pain. It's not OK that I've been taking codeine for months and am barely coping. It's not OK that I'm expected to exercise whilst feeling horrid and have no proper pain relief. It's not OK that exercising increases my pain. It's not OK that a doctor thinks I'm not exercising enough.
 
It's not OK that there are people in the medical profession who just don't seem to give a shit.
 
Dear doctors- you deal with shooting, stabbing and sharp pain in your spine and chest for SEVEN MONTHS, consume codeine almost daily which will make you feel sickly and see how well you cope. And then you can tell me to exercise. Then you can tell me that I'm not doing enough. I'm sure you'll be eating your words.
 
Here's news: get my pain under control and I'll be more than happy to exercise.
 
It's not OK that I was told that it would only take 48 hours to process the rest of my application for humira and yet FOUR WEEKS later I'm still waiting for my script.
 
It's not OK that the exercise physiologist who I trusted to help me get moving again has given up on me and put me in the too hard basket all because doctors didn't give me adequate pain relief to overcome my exercise restrictions.
 
It's not OK that I've spent the last three days in my PJ'S. It's not OK that I had to have icecream for breakfast to help cheer me up after spending half the night trying to get pain under control to sleep longer than twenty minutes at a time.
 
Yet it has to be OK.
 
I can't give up on myself. I'm not giving up on my life. I have to be my own hero, I have to be my own cheerleader and keep shouting at myself that my good enough is good enough until I believe it, even if no one else does and in spite of doctors making me feel dreadful about my lack of improvement and minimal achievements.
 
And here I am trying not to get my hopes up too high that this new drug will enable me to live a little better, while trying to remain positive and yet realistic. I'm trying to prepare myself for the worst while dreaming of better days. I'm trying to remind myself that just as the raging wild storm outside my window will pass, that this too, shall pass.
 
That better days and greater things are coming. That somehow everything will be OK and that one day I won't have to try, have to hope and somehow cope because I'll be healthy. One day soon I'll be whole again.
______________________________________________________________________
 
 
**** Two good things about this week: 1) My laptop is fixed (hurrah for being able to blog), and, 2)humira has finally arrived late this afternoon. Praise. The. Lord. Now I have to find the courage to stick myself with a needle. Joy. Are you having a tough week like yours truly? Need someone to scream to? I'm all ears x







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2 comments:

Alanna said...

48 hours for a humira application? Yeah right! Mine take minimum 2 weeks every time. It's horrible :( The scripts only last 3 months and I see my rheumatologist every 3 months :( For example, I had my appointment last week, 12 days before my next injection was due. I won't get it time and it's just a waiting game until my script arrives. Half the time, I know it's my rheumy's fault because when I ring his surgery, the receptionist says, oh he forgot to sign or he forgot this part etc etc so they sent it back. GAH! Once, I was a fortnight late with my injection! That's a whole cycle :(

Hope everything picks up for you soon Emily! Hugs xo

Miss Chronically Creative said...

oh gosh what a pain. That is so frustrating. You would think that they would at least make the scripts last for 6 months, we obviously need them or else we wouldn't have qualified. The system seems stupid. It doesn't seem fair that they make people in pain wait and it doesn't seem right that patients should have to miss cycles.

I have to go personally give my script to the pharmacist, then wait until they call me telling me that the order has arrived, then I have to go back down again to pick it up. Argh it's so silly!

Ah well. Yay for a humira buddy who knows how frustrating it is. X

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