Don’t ever forget

It’s official, I hate lists! What is the point, of all the endless lists, that I am finding not only on medical sites and in chronic illness blogs these days? Lists tell us nothing. If you want proof, well just take a look at the list of symptoms that apparently make up your condition, is that how you feel? Is that your truth, your experience? If that’s not enough, then have a look and see how many other conditions share those symptoms. Do it for just half an hour and see how many other conditions there are, that you might have been diagnosed with, if you didn’t have the detail. Have I made my point? On its own, a list is a blank collection of words, words that don’t actually inform in any way, without a fuller description and details, which after all, are the important bits. To a certain extent, I do forgive the medics, they, after all, are supposed to be logical thinking machines, so lists are forgivable. We the bloggers of this world, mainly, aren’t doctors, we’re everyday people, living, breathing creatures with emotions and feelings and so many, many wonderful details. Making all these continual lists about our health, is, like asking your partner to marry you, via a powerpoint presentation containing all the financial checks and balances of your future lives together. No one would do that, so please, ditch the lists.

Outside of giving birth to my children and falling in love with Adam, I can’t think of anything in my life that has been more emotional than my health. If you think about it, the question we are all asked the most throughout our lives is, “How are you?”. They’re asking “How do you feel”, and all feelings are emotions. You cannot separate your health from your emotions. Feeling sick, or feeling pain, isn’t just a sensation, it is highly emotional. I was emotional about my health before I even knew what it was. There was anger at my doctors for not listening, exasperation that I couldn’t get them to give me an answer and desperation, as I didn’t know who else to turn to, and so I could go on. Which might also be part of the reason, I have no desire to emulate their style. There is nothing about chronic illness that isn’t going to tear every emotion there is out of you, and that is in just the first week post diagnosis. Learning to deal with those emotions, is probably just as hard, as it is to learn to deal with the condition itself.  In some ways, it is the perfect storm. Our bodies are being ripped to pieces, often by themselves, and our brains are exploding with grief, pain, disbelief, anger and all while we try to put on a stiff upper lip. Life goes on, we still have to work, to do all the things we were doing the day before, but now we have this cacophony of feelings all demanding to be dealt with, but we don’t have the time or the knowledge, of how to even start.

So many people seem to think that all that stops eventually, well it doesn’t. It changes, it ebbs and flows, but it never goes away.  Fifteen years post diagnosis and I am still as emotional about the whole things as I was back then, yet, I’m not as many are, depressed. There are many reasons, why I believe I have been so lucky to not fall into that mire. The biggest, well that’s the fact that I went through depression many years ago. They’ed call it PTSD these days, but mine showed up as self-destructive depression. Six weeks in the hospital and three years of therapy got me through it, and taught me just how to deal with life. I now know that I was also dealing with the beginning of my PRMS, but no one knew that back then. Having been through depression, having lived it, breathed it and nearly died because of it, I understand that beast. Being emotional, having a damned good cry, getting a bit low at times, that isn’t depression, that’s life, in fact, that’s a good life. If you can do all those things and feel relief, then you’re not depressed.

Chronic illness isn’t all about the bad, there is a lot of good within it, you just have to look, but you will find it. Every time the course of our lives is changed, the things we do, what we learn, the people we meet and the places we go, are changed. If you have been ill for even just a year, without a doubt you will have met people you wouldn’t have met before. Those people will have changed you, some inspired you, some educated and some maybe just made you smile, but none would you have met if you hadn’t become ill. The biggest good for me without a doubt was my introduction to Twitter and to blogging. I wouldn’t have gone near either, if it hadn’t been I became housebound. It may have been a dramatic way to land up here, but our health is dramatic and vibrant and actually pretty amazing. Who knew that our bodies could do such things? No, I haven’t gone as far as celebrating the fact I became ill, but, I have found an incredible peace with my life, and I still believe we all can.

Embrace your emotions, all of them, as if there is anything that shows we are human, it is them, few animals show quite the range we do, so why try to turn your life into a list? If you must, make your list, but don’t post it anywhere, just use it as a framework, but please stop trying to be medical computers, remember how it feels to live and put those feelings into everything. Life is about passion and if chronic illness teaches us just one thing, it’s that there isn’t a second of our lives, that we don’t feel something.

 

Please read my blog from 2 years ago today – 31/03/2014 – A safe environment for who?

This is going to feel like Sunday all day long, Adam is sat on the settee and I have the TV on programs that we would watch together on a Sunday, but it’s Monday. I am doomed for the rest of this week to be on the wrong day, just because Adam has taken a much needed day off work. His day with his family seems to have gone well, but as always he has little to say about it as well, what is there to say about a day spent sitting in someone else’s home talking & talking, I know what they are like when they get together. I have to say that conversation is something I now find difficult, it is as though my brain exists, just at the point someone want to talk to me. It happened yesterday…..

8 thoughts on “Don’t ever forget

  1. I don’t understand the problem with all lists. I just didn’t get where you were going there. List of symptoms do not a person make and often symptoms are not the same for everyone. that’s sure is the truth, huh. So lists are hard there. But we still have to have some guidelines about an illness or you don’t know what it is. Like Meniere’s, my main illness. it is often misdiagnosed because they say people have it that don’t fit all the criteria…the list. It isn’t long, and it says you can have many other symptoms but you need to have the 4 things that make it Meniere’s. There isn’t a test for it, so you need a lists of symptoms to say if a person has it or not.

    Personally I like list. They are easy to read, have compact amounts of information. But they can be elaborated on.
    I might get lost without a list. 🙂
    I need to take one with me to the dr, or I forget things.
    Now that my brain doesn’t function like it used to, lists are necessary for me.

    Liked by 1 person

    • As I said, I don’t mind the list put together by medics, they do have their place. I read a lot of other blogs and recently, there are more and more blogs with list within them that say nothing about the truth of that person illness. For example, to make a list that just says there is pain in
      1) legs
      2)arms
      3)head
      actually says nothing. If the writer had spent even a minute writing a couple of lines as to what sort of pain it is, how it feels, when it happens, how it makes them feel, would be of far more use to the reader and then start to gain an understanding of the condition. If people were expanding on their list, then they are OKish, but even then most are just a cop out for writing a piece that is detailed, thought out and informative.

      List are wonderful if your doing the shopping, but then only if you wrote the list and do the shopping yourself. Give your list to a stranger and ask them to shop for you, and I bet, that their basket, will be very different from the one you wanted. Not everyone thinks of the same thing with a one word trigger, just take the word Coffee, the options go on forever.

      Liked by 2 people

      • I don’t think I think of list as one word prompts. That would lose all meaning for most people. When I make a list, like for my doctor, ect, then it is detailed.
        Like my migraines, I have to keep a diary, it’s mostly just a list of things, but it is detailed. This list makes it easier to look at the picture as a whole.

        I have a list of my illnesses, but within it I give a definition of it, put when I got it, how it affects me,….ect. It’s not just a list of words.

        I did a post about things you shouldn’t say to someone who is chronically ill, and then one about things to say. Each had a list, but I put in why this certain thing was important to me. It sure wasn’t a single word or even a sentence.
        that’s what I meant about expanding on the list.

        The way I do a shopping list, anyone could probably shop for me and get exactly what I want. 🙂 Yes, I’m that detailed. HA.
        I have to order my groceries sometimes so I’ve learned to be very specific. I even tell them how ripe I want my fruit.

        but I get what you are saying about list, I just didn’t understand it from your post…but I am having a foggy brain day.

        Cheers! (good thing I don’t drink coffee…heeheehee)

        Liked by 1 person

  2. I’m addicted to lists, though I have fewer lists now that I can’t put pen to paper and write anymore. Sometimes I’ll be trying to fall asleep and my mind is being bombarded by things I need to do, stuff I need to talk to someone about, groceries needed, etc. If I don’t get up and get that crap written out, I can’t sleep. If my brain were on point more often than not, maybe they wouldn’t be necessary.

    I have a very detailed list of symptoms that’s constantly evolving. Without that I might forget to mention something important, and sometimes I do post lists because it’s easier for me to work through my thoughts that way, or make what I’m writing a little easier to follow. I’m all over the place, as I’m sure you’ve noticed. 😉

    All of that being said, I agree with you; sometimes lists are a cop-outs and used in place of actual writing. We’ve all got our pet peeves.

    Like

  3. Just like anything else, there are good lists and bad lists. Maybe it comes down to writing style. If someone continually has posts I don’t care for, I unsubscribe.

    I have seen lots of lists lately like Dizzy Chick’s that are full of great advice on how to help someone who is chronically ill. Those are great to share with friends and family or even to post on FB for people who want/need to understand chronic illness. But a list that won’t mean much to anyone else? I am glad I haven’t run across those.

    I love what you shared about Twitter. That is the place I actually am able to share my true self and problems. Anywhere else, spoonie, invisibleillness, CP, CF, and even my main diagnosis of Dysautonomia are like foreign words. There are a few who seem to recognize the terms, but on Twitter there are HUGE communities of people sharing about these topics and I really appreciate them.

    I have a few blogs I follow, but Twitter is the first place I felt accepted and found that I was not alone.

    Thanks for sharing!

    Like

    • And thank you for reading. Like you twitter was were I began, and just like you, I found people who understood what I was going through. That is the beauty of the #, no matter where we are in the world, we can find and support each other.

      Take care (((Hugs)))

      Liked by 1 person

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