What next? The web?

For the past 3 or four days I have been plagued once again by edema, I had been expecting to flare in through out the really hot weather but there was no sign of it, so what made is appear now, well your guess is probably as good as mine. I think it was on Wednesday that I first remember sitting during the evening and I had trouble moving and bending my toes, it is often what brings my attention to it first as the swelling has managed to get to the point were ballooned toes are trying to move towards a ballooned foot, it doesn’t really work, anymore than folding a pillow works. I have been told for years that to stop it happening you have to rest with your feet up, well the only time my feet are down is for around 7hrs at my PC each day, so I don’t know how much rest I am supposed to give them, all 24 I guess. Anyway, it was there at night time, the point I normally first find it and when in the morning I still had the problem when sat at my PC I knew I was in for another session of fat feet. I should have taken my med for it then I suppose, but with the problems I have with Vasovagal, I do have to be careful with furosemide as it can make things a lot worse, so I left it that day in the hope it would vanish by itself. On Friday I was having problems with not just my feet, my entire legs were now tight and bloated and I was also having more problems with breathing, so I took my med and spent the morning in the loo. I passed gallons and thought there should be some change by that evening, there was none.

I was so uncomfortable that evening that I couldn’t settle my ribcage in any position where it didn’t feel it was cutting into something or other and I know my breath was once again shallower, as it had been before the new regime of meds and physio. It was so bad that I knew without checking anything in the morning that I needed to try again, another measure of the sweet almond tasting bright yellow muck, a tip for anyone who has to take this too, is if you find the taste as horrid as I do, don’t waste your time trying to drink something to clear the taste, the quickest and best way to clear your mouth is to just eat one grape. There is something in them that cuts right through it and leaves your mouth feeling clean and fresh. Saturday passed and again by nighttime my breath was shallow and my body uncomfortable and bloated, but I had hope that this morning would show improvement. I do know from previous spells that edema doesn’t always clear quickly but normally I do see improvement by day 3 or 4, so today to be able to once again see clearly the bones in my feet is a joy but also confusing. My ribs are still refusing to go down, they are still stretched and out of place and each breath is more labored than it should be. Before I always found that the fluid would clear from the upper parts of my body, slowly moving downwards until my feet eventually cleared. So here I am having drunk the stuff and eaten the grape and on my third journey to the loo, with little left for me to do but wait and hope today is the day it will really clear.

Although it wasn’t something we discussed with the doctor I already was very aware the fluid collects in many places and one of the well known one is the lungs, I never thought about it at the time but I suppose it is something I should ask when we next go to the hospital in October. I have a feeling that it might actually be a good idea to start making a list of things to ask as I bet this will not be the only one as time ticks on. I once again wish that I had some medical person designated to read this and pick up all the points that arise, I know that there will be so many that are identical to problems others have as well, but all of us forget when we eventually have that doctor in front of us. I have lost count the number of times others have said, oh that happens to me, I never thought it was part of this or that, or I thought I was imagining that but I have the identical. It is so easy to sit in our own homes, isolated by our health and simply not knowing that the thing we are worrying ourselves about are normal, or needs attention, or what ever it is but simply because no one has told us, or brought our attention to, or even thought you might one day have. Doctors work the wrong way round for the chronically ill, they wait for us to tell them rather than them warning us in advance. I have lost count how many things I have calked up as things of no importance, to only find later they were the first signs of an important change in my condition, but I didn’t know!

I know there is a fine line between what we need to know and what might just scare us, but personally the things that scare me are the unknown, I would far rather be forewarned and armed with enough knowledge to know if I need help, or if it is safe to leave it alone. I can’t actually help wondering how many people actually die each year just because they thought they didn’t need help, or that the way they feel is to be expected as surly someone would have told them if it wasn’t. Those so called helpful little leaflets that we collect about our health never seem to have a warning second, nor have I found one yet that actually lists anything like the real list of symptoms. All of them seem to have nothing but the smallest amount of information possible, they may see it as the common ground shared by all who have that illness, but they leave the rest of us lost and constantly wondering what is going on.

To all those doctors I have met and I am sure you have met to, that raise and eyebrow when you mention what you read on the web, well if you don’t want us, the people who are living with illness to search for more information, may be you should just give all of it to us, rather than the snippets you think we need to know. Dismissing as as though we don’t have brains is a clear line set out for us to go looking for ourselves, after all it is our bodies and our illness, so try trusting us, teaching us and helping us, instead of just treating us.

5 thoughts on “What next? The web?

  1. I so totally agree doctors always tell us what they think we want to hear rather than helping us to understand what is wrong they give us the well rehearsed catchphrase snippets they think that we just make stuff up off the net when we try our best to find out what it is all about

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  2. I agree. I am always ready at the specialist , questions formulated, etc. we have to know our own body. And we do know it much better than anyone. Hope you feel better today and know that I am practically home bound,, if not for my husband . Cyber friend

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  3. I absolutely agree with all of the above. I have Raynaud’s disease which is something that makes my circulation act very poorly. My fingers and toes become numb and hurt whenever they become cold. The winter is when I feel the most excruciating kind of pain. My family doctor told me that there was really nothing that I could do. However, I recently discovered that a friend of mine has a friend with the same disease and her doctor gave her the proper advise and her Raynaud’s is much more controlled than mine.
    I hope you feel better because from your post, the pain that you are enduring is dreadful=(

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  4. Trust in GOD to remove the poisons MS out of your body and the anger you have…he loves you and has never forgotten you. Be bold about it and pick yourself up and say I can beat this miserable disease. Don;t let it beat you.

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