A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Thursday, 7 October 2010

Water balloon

I have swollen up with water retention again, pretty much as I did last time I was in, and like last time it's sore and uncomfortable and miserable. Unlike last time, the doc has been very reluctant to prescribe any meds to help relieve the water retention, so while I've been telling them for at least a week that I was starting to swell up, nothing has been done. I asked them for some furosemide, but I was told that nature would take its course. Nature refused to take its course. I asked again, but I was told to try to move around more and that would help. I moved around more, and walked on the spot in my room on my own for as long as I could comfortably go and for longer. Moving around more didn't help. I have continued to swell, and the fluid has gathered once again mostly around my hips and waist, and I feel like a balloon that's about to burst, and my skin is sore and stretched and nothing is comfortable. I asked again for some furosemide to help, but I was told that they were reluctant because I'm on so many meds already. I can understand that to a degree, but not when I'm so uncomfortable that I want to cry. And the stress built up, and the whole damn lot just got too much to contain, and the water burst out of my eyes in a torrent of tears and pleading, and desperation for something to help get rid of the swelling. I was told that in their opinion my feet looked a little better today. That's because it's all around my middle and my hips and my waist...except that actually it's all still there in my feet too, and I hurt and I'm bursting, and my body is going to pop and my skin is going to snap, and I'm sore, and I'm crying, and I don't understand why they won't give me something to help. I was given furosemide last time and it did me no harm; in fact it helped, as it ought. Why so different this time? What is the reluctance? What is the problem? Why don't they give me a reason? Apparently I have to understand that there's a hierarchy of doctors and that if the more senior doctor doesn't want to prescribe the meds I'm after (for whatever secret reason) then the junior doctor will not take any initiative in doing what is actually necessary for the patient's welfare. Okay, so I understand there's a hierarchy. I understand that junior medics have to play by the rules of their seniors. I don't have to accept the lack of reasoning for the 'action' being/not being taken. I don't have to agree with the decision. They don't seem to have to see it from the patient's point of view; and God forbid that they should see real patient distress in discomfort as reasonable. And no, this is not my usual experience, and no this is not my all-encompassing opinion of these people and their attitudes - it is my experience of them in this instance, in this situation, when I'm sore and stretched, and I'm tired and fed up, and I'm drained by the cycle of illness. It may 'only' be fluid retention, but it's just all a bit too much, and sometimes it's the seemingly small things that tip the balance from coping to emotional melt-down. Today I reached melt-down, and I cried, and I cried, and I lay in the darkened room, and I cried, and I hid under the sheets and I threw my dressing gown over my head, and I cried. Then I cried some more, and I felt wretched and I wanted the world to disappear, or me to disappear, and I wanted to stop hurting, and I still want to stop hurting. And I want illness not to be a part of my life, the major part of my life, the pivot of my life. I want to be normal, not NFB - Normal For Becky. And I'm fed up and miserable and wallowing in self-pity. And I cry and I weep and I feel lonely and miserable and as though nobody in the whole world possibly understands what any of it is like, particularly not these doctors who's knowledge of all these things is most likely through the pages of their text books rather than personal experience. And today I feel like an experiment that's gone wrong, but is still rather interesting to watch in some odd way. I don't want to be an experiment. And I have cried, and I have exhausted myself, and I have cried some more, and I have wept through cyberspace to some friends, and they've let it be okay to be miserable. And I've covered my face in snot because I haven't got any tissues, and my friends haven't been disgusted by the snot. No, they've found a use for it - use it as glue and throw glitter on it. Make the mess a pretty mess. And I'm still enormously full of water and feeling like I'm going to burst, and I'm hurting and I'm sore, but I'm loved by my friends, and I'm calmed by my friends, and I'm held by their cyber hugs in a real warmth and the glow of cyber glitter and cyber snot, and the mess is still as messy as ever, but it doesn't matter because I'm held by their love when everything has just got too much.

The nurse weighed me and it was found that I had eleven pounds of water retention, so now the doctor believes that I might actually be feeling as sore and uncomfortable as I was telling her I am. I was given one tablet of furosemide, but I don't know if this is just for today or if I will get it again tomorrow and some to take home. What I do know is that there's no way that I've got rid of 11lbs of oedema this afternoon, and I still hurt, and I'm still stretched, and I'm still a water balloon. But I hope that tomorrow I will get another pill to help wring the water from my over-stretched body ... and if I don't I will have to hope that the water in my body can somehow all be released through my tear ducts as that seems to be the only other way that any fluid is leaving my body.

And maybe this doesn't make any sense to anyone but me. And yes, it's a ramble and a mess, but today I am a ramble and a mess. And sometimes life is messy and it can't be written about in a neat and tidy way with pretty language and sentences that flow easily. Sometimes it's all too much. Sometimes bubbles burst.

And then my vicar came and he brought me communion, and it's so long since I had communion because it's so long since I've been to church, because so much of the time I feel too ill to get there or be there once I've got there. But each day I've been here I've curled up with God, snuggled under his blanket and poured out all my prayers of thanks and confession and supplication. So communion feels good. No, communion feels wonderful. Communion brings me a little peace and a message to 'be still and know that I am God,' so I am still and I know that He is God, and I rest with him a while. Then I do some cross-stitch to distract from the discomfort of my water-filled body and the discomfort of my crying mind, and it turns out that a combination of communion and cross-stitching Mr Tickle (and have one of your friends tell you that he's going to call you Polly from now on) can actually help emotional melt-down.

6 comments:

water retention lady said...

Becky, there is always a reason for water retention. Asthma is not a reason, although one individual can have both asthma and water retention. Your doctor was wise not to prescribe diuretic drugs since all they do is force your kidneys to work faster. They do not cure water retention as they have only a temporary effect and can worsen water retention if taken too often. Hoping you will be interested in clicking on the link as changing what you eat can often help both these problems.

Wanda said...

Becky,

So sorry there isn't more I can do for you, if I could take your place you know I would.

Love you loads and mega cyber hugs

Wanda

B said...

water retention lady, that's all very well, but becky already has an extremely restricted diet due to her allergies. i realise you're trying to help, but i think it's a little misguided in this case - especially when becky is obviously extremely upset anyway.

becky - i had a meltdown which i blogged yesterday, so i can relate. it's horrendous when you feel like you're falling to pieces like that. and i cried before to D that i wanted to be myself again and that i hate that i'm not.

oh, i wish i didn't relate so much. but i do.

sending hugs.

wheezytux said...

hey becky,
I am so sorry to hear of all the trials you been having with your chest. it sounds so horrid and such a tough time for you. I wish i could wave a magic wand and say it will all be better for you. i hope the water rentention goes away and the dr does give you more fruesemide to take the water away. I guess if the water goes it might make breathing a bit easier too.
really thinking of you and rooting for you. hugs olive x

BeckyG said...

Thank you all for your comments, and B, I'm so, so sorry that you've had an emotional melt-down too. If there's anything I can do, or you just want someone to sit in silence at the end of the phone, or whatever, then I'm here.

Water Retention Lady, thanks too for your commnets, but I'd like to say one or two things. If the water retention I have were a long-term problem then yes, I'd be looking for a long-term solution, and perhaps in that instance things like diet would play more of a role in its management, although as B has pointed out, my diet is restricted and complicated enough due to multiple severe allergies, and I would *only* further eliminate other foods after a lot of consultation with my doctors. You rightly say that asthma is not a reason for water retention, although I do have to say that severe illness and immobility *are* reasons for water retention, and for whatever reason my body seems to have started to respond to life-threatening asthma attacks by retaining water in the aftermath. I don't understand why, and this is something I will be asking my doctors. As for the furosemide, I don't ask for it lightly and without consideration and acknowledgement that it is yet another medication, but I am in pain. My body is swollen and stretched so that even lying still hurts. It's uncomfortable and sore, and contributes to a general feeling of misery for all sorts of reasons. In the end the doctor did give me one dose of furosemide, which didn't do a huge amount considering how much fluid there is to come off, but I was discharged from hospital on Thursday and my own GP has given me a week's course of furosemide to ease things, as she could see how uncomfortable and tender I am. Believe me, I have no intention of taking these for longer than I should need, but sometimes a short course of medication *is* what is needed.

B said...

thank you becky. you are lovely. and if you're up to it we should meet soon for coffee. even if all we do is sit there and look exhausted at each other.