Sundays - pills and worries.
Sunday is pill day, the day my tablet organiser has to be refilled. I hate even having a tablet organiser, but i found that having to get all the various pills out four times a day was a real hassle and i'd often forget to do it. That is a Not Good Thing To Do. Pain likes to sneak in and bite you when you don't take the pills.
That right there is a lot of pills. Especially for someone who uses medication as a last resort. If i had a headache? I'd have a glass of water, try to lay down for a while. I'd only take a paracetamol if no other method was successful.
Morphine. Or to be more precise, Oramorph, which i think is more dilute than morphine itself. Either way, it certainly isn't jelly beans (and tastes like liquid evil).
A lot of people have joked about the pain relief i take. Well meant, i am sure, but still somehow it makes me feel they aren't taking my pain seriously; "You must be floating along all day on all that!", "Damn, if you ever have any to spare i'd buy it off you (wink wink)"*.
If you are taking pain relief and it is getting you stoned, it is stronger, or a higher dose than you need. Though my pain killers can sometimes make me drowsy when they initially start to work, they have never made me 'high'.
All this does worry me though. I should have recovered by now. Why isn't my pain lessening, why hasn't my mobility improved? I certainly want to be better, i try to push myself to see if i can do things yet, but invariably end up hurting myself because nothing has changed, nothing has improved.
A doctor i had never met recently decided i was ok to start physio (once i have seen the pain team to try and do something to control my pain). He told the OT that i *should* be fine by now and that there should be no movement in my pelvis any more.
I would like that doctor to experience my day. Even just a morning when i have laid just a little too far on my side. Because when i do that, the bones at the front of my pelvis overlap (so much for no movement, right?). They overlap and then at some point, they UN-overlap. This is so painful it leaves me in tears, and you can actually hear it when it happens. A rather stomach turning 'CRACK'.
I am going somewhere with all this.
This week i got my Atos form. I still haven't been able to even read it.
I will read it, and fill it in, it has to be done. But the whole thing fills me with dread, i know i will have to be 'assessed' by a stranger who will judge me, even though he or she will know nothing about me or my situation. My own doctor wrote on my sick note "back pain". I think it's a little more involved than that, but will Atos understand that? Will they see the struggle that is my daily existence? Or will they just judge me to be a scrounger, afraid of work?
*I have never, and would never sell on (or give away) any medication prescribed to me.
I so feel for you sweetie. Just having a bad headache is enough to make me miserable. I can't even begin to imagine what it's like for you to have to bear all of this. I can only hope that the person who comes to assess you will have at least some imagination, will somehow be able to put themselves in your shoes.
ReplyDeleteI do hope there is an end in sight to all of this.
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ReplyDeleteI find it amazing that you have so little in the way of help given you have such a (presumably)easily observable condition, it's horrible! I hope you get through all this, you're such an amazing lass! :D Not saying you're brave or any of that tripe but you manage to stay you through all of this and that is so admirable! xx (I misspelled about 5 things so rewrote this comment)
ReplyDeleteyou are very brave,my husband was disabled and took many painkillers daily,so understand a little of what you go through, your amazing mum, you need a lot of strentgh to go through what you go through every day
ReplyDeletethey say you should never judge a man, until you've walked a mile in his shoes. i can't imagine what you're going through and my sympathy must sound like lip-service as i've never known real pain. what i do know is that it amazes me how you cope like you do, especially with your change of circumstance - and yet you still manage to sound so upbeat and funny. and remember that if there's nothing else we can do, we can be an awesome cheering section. xx
ReplyDeleteI feel for you so much and you are amazing. Keep going and you will get there. Huge hugs x
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