Thursday, March 11, 2010

Symptom Diary...

My primary care doctor instructed me to keep a diary of symptoms and medications and improvements vs getting worse... I started it, only to realize throughout the very first entry that I would be writing all day long... Symptoms to me are feelings in your body that come and go, the bolded italicized word there being GO... But what if they do not go so quickly? What is it then but a lifestyle that I must deal with day in and day out? If the weakness is there everyday, all day, worse after doing more, but still there? This morning, like every morning for the last 4 months I woke up in pain. I cannot remember a morning I didn't feel before I cracked open my eyelids... You know, during that time before you are really awake, when you are aware of your surroundings and the noise of the kids or the heater or the dog outside. During that time when normal people are getting their bearings straight and realizing the day ahead of them, I am praying out right. Starting off the day asking God for relief for the pain I feel already, that it not be an indicator of what my day will be. The physical act of getting out of bed is so very difficult. I used to be able to just pop right up out of bed, no big deal, right? Not anymore. It takes every bit of strength I have to get moving, so where is the reserve for the end of the day? The infamous "second wind"? So would I say the meds are working? Well, if I don't do anything, sure. But if I need to function during the day like any normal adult, then no. How do you learn to live with this? Adapt to move on with your life? How do you move on? How can you move on if each morning greets you with a taste of the rest of your day? Then you are confronted with the outward view of being "grumpy" so you feel forced to bottle it all inside, all your weakness, all your pain, the halos in front of your eyes, the trouble seeing, you can't make it known that you are struggling because then you are viewed as grumpy or not trying hard enough. It doesn't count that you use every bit of what reserve you have left to complete about half of what a normal adult would. That doesn't make a bit of difference. Or that there is a reason you are not working, that the doctors have advised you not to drive right now... Those things are forgotten and once again it is expected that you get back to it, or so to speak...

What do you do when sweeping leaves you breathless but leaving the pile to pick up later when you get your breath back looks like you are taking shortcuts and being lazy? Most people who have been where I am for many many years say "forget it! Leave it and who cares what they think!"

So, for the doctors sake and for the people who think I am just being lazy or grumpy, here is how I feel today:
I woke up and my arms could not push me up to sit up on the bed. I stood up and my legs felt like jello and the muscles cramped. All night and so far all morning various muscles have twitched and fluttered all on their own, with no control of my own. It's really quite annoying. It reminds me of a jello mold with a wave passing through it. I'm so very cold all the time. Pins and needles, tingling, the usual annoying parts... Headache...
Pain, well we wont even go there because it is so bad that focusing on it will take away from everything else I am feeling. It has already. People who are close to me focus on the pain and forget that it's not just about pain. Here's an example: if you made a fist and squeezed as hard as you could you would leave fingernail marks in your hands, maybe even break some skin. When I do the same right now I can barely get my fist to close all the way... Trying to swallow the many supplements and medications this morning was like shoving a pill down a dogs throat. I choked and sputtered and forced them down... Not having much of a gag reflex left, I choke on every other swallow. It feels like panicking and drowning every time it goes down the wrong pipe... Oh, and the memory.... Shall we say screwed up?? I receive frustration and deep sighs when I have to ask over and over what is going on during a day, or a schedule for the week, or can't remember even what I was doing that very moment... Thankfully I have excellent and patient instructors who have been very lenient in my late work being handed in. According to her I make up for it in quality. I can't remember what I was going to say next. It's hard not to bite back when criticism is what I am faced with. Especially when I have watched myself, as an outside spectator, fall far beyond where I ever dreamed I would be. It hurts. I certainly didn't do it on purpose. And facing the mountain I have to daily climb back up to get anywhere close to where I want to be is a shivering thought. I am worn to the nub, like a sand smoothed and rubbed by the surf, only it has not added to my beauty and desired qualities.
Some people say I am having a hard time dealing with it, others say I am giving in to it, not fighting hard enough, and yet others dont really care as long as I don't expose them to it. But what about what I say? Does that matter?


  1. Well this post wasn't here an hour ago as I put another comment as well as my last on your last post.... Its two o clock in the morning here... why when I have had a busier day (bearing in mind my idea of busy) and am over tired can I not sleep I wonder. Anyway this is about you not me.

    Trish Trish Trish - stop beating yourself up so much.

    Who is judging you so apart that is from yourself? You can email me the answer to that one if you like.

    You are right the leaves can stay there - wearing yourself out with such low energy levels already is pointless, however much they irritate!

    Driving - will email you that on that one. I will I will I promise.

    Symptoms, a few ideas. Please feel free to discard seemingly ridiculous one's and laugh a lot at me.

    Have you looked at the possibility that you may have POTS quite badly at the minute and some of the symptoms you are having in the morning could be related to autonomic dysfunction. Just a few ideas, try upping salt intake and fluids. Really important.

    Have a medication review with a pharmacist, going through possible drug intereactions and possible rare side effects. (Really important.) If there is a rare side effect to be had I get it.

    Twitching as you know can be caused by a variety of things,EDS. from fatigued muscles, to a common side effect of some drugs, to dehydration panic attack bla bla.... plus some medical conditions.

    Driving... I will email you.

    Be kind to yourself.

    Headaches... side effects of some pain killers (particularly some opiates) . EDS. dehydration. neck problems! Blood pressure fluctuations. Stress..... bla bla bla

    Memory Issues, some AED's cause really really bad memory problems. I know! POTS can cause memory problems. Pain, fatigue. Stress. Depression.

    As for grumpy - is this just you saying you are? I bet in reality you try your hardest every day. I think in actual fact thats some of the problem. You are exhausted before you even get out of bed.

    What you say of course it matters. BIG TIME.

    I can't move when I wake up - neither can my daughter. She gets a sort of paralysis. I get mind blowing pain - husband has to lift me very carefully to sit and then I have to gently stretch for ages before I have help to get up. The pain is usually in my spine, ribs with accompanying spasms - nice. But hip, usually joins in plus the rest.Numbness is usually followed by pins and needles - oh its good to be alive...

    So Trish Trish Trish - I do get it.

    YOU NEED more help around the house - more support generally. Whilst you are having such a flare as this.

    You are not giving in - this is real and needs to be accepted by those around you so that they can work with you to make life more bearable.

    Will have to email tomorrow now with other stuff as got computer eyes.

    Be kind to yourself.

  2. I so appreciate every word that you send my way!!! I am sorry that you feel this in every way that I do, and even more sorry that I get a sense of hope and understanding and well being from your words. I don't take pride that others pain gives me hope, but to have someone REALLY understand is so vital to me right now!!!!

    And, just so you know I did get a "LOL" out of your comment, even if it wasn't on purpose!!! The "leaves" hilariously were not literal "leaves" but the meaning of the word in "leaving" or "left" undone. My literal leaves have long been left right where they were and the dog and the kids piled them up and jumped in them and I watched and laughed!! Hahaha

    Sweeping the kitchen floor, trash left in the corner because it feels like I am going to drop when I am done! My husband says sometimes: Have the kids help you more! And I do have them helping more than they used to, they are learning responsibility, but lately I feel a sense of guilt having them do my work knowing that they hurt sometimes as much as I do, especially if we do a great deal of cleaning and then Kimber wakes up in the middle of the night with a headache. That is heart wrenching. I am still learning, I am a horrible pendulum swinging violently from one side to the other trying to find a happy (or less painful) medium.

  3. The pendulum is a great image for how we do or do not take the care we need for ourselves. This struggle you are feeling has been me, several times. We try our hardest and put everything we have in ourselves to accomplish slowly what an average person can do while having their morning coffee and not even thinking about it. We put up with the chronic pain, the acute pain from our actions, and the exhaustion of pushing ourselves to the limit. And after that, there are people that will say, "THAT is all you've done?" And sometimes that person is ourselves. I know that I remember back when my EDS was not as bad to when I could do so much, and when I see how little I can accomplish with so much effort, it hurts.

    And I've found I can go two ways when I feel this way.

    I can push harder to ignore the pain and fight even harder to do more than my body tells me I should. Can I do more when this happens? Yeah sure. Did I end up in the hospital the last time with the possibility of permanent nerve damage? Absolutely.

    The other way to go is to take an hour or two and recenter myself. Take a bath, meditate, pray--whatever. But I have to remind myself that my body is no good to me if I abuse it. And expecting it to do what my neighbor can do, is just that. Now, it normally takes my partner lecturing me and nagging me back into resting to realize that I'm getting to this point again, but once I realize that I'm getting there I can start to get back into a healthier space. Be gentle with yourself.

    I hope that made sense and wasn't too long or unwelcome. Take care.

  4. Thanks! No comment from someone who knows where I am and have been there many times themselves is unwelcome!! Saurou: I have to say that your profile pic made me laugh. Before I had 4 kids and gained more weight than I ever dreamed of I could totally wrap my legs around like that, and it was actually very comfortable and it used to freak people out! hahaha. Thanks!!

  5. I still wrap my legs like that even though I should not. I think I commented on your blog Saurou about it somewhere! I do it I have worked out to keep myself on a chair particularly an upright one as I am short and in my own weird way it helps me to stop falling off it! Enough said my guess is you get the picture.

    Are you OK Trish. I know I know I haven't emailed. But I haven't emailed anyone (hides head in shame).

    How are you?