guest post: healing auto immune #9 (by a reader)

Posted on June 16th, 2010

Another installment in the series. This time, it’s by a reader with CFS – Natalie, who writes a very sweet blog, lemon butter. I really do believe that AI is something that’s going to become more prevalent…I think it’s a symptom of our stressful, A-type and toxic times.

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Which is not to say I’m totally dark on life and all it sends my way. No fear. Having an AI is a great wake-up call. I’m healthier than I’ve ever been. And I’m in a great position to issue warnings and advice and love to others who push their bodies a little too hard…(yes, do as I say, not as I did).

Enjoy Nat’s e-share. I totally get the peanut butter thing and the vegemite thing. I do both when my body is craving instant energy hits….

I’m Natalie, also known as the girl on reception, Max’s girlfriend and the girl that had that sickness where you’re always tired.  I prefer to call it Chronic Fatigue Syndrome or Mylagic Encpehalomyelitis, or for practicalities sake; CFS/ME, which is an autoimmune disease that has ruled my life for the past 5 years and although always tired, gave me chronic insomnia, too.  Other symptoms like paralysis and loss of speech got me too.  A quick Google search will show you more.

I got some pretty weird symptoms, like not being able to stand up but being OK if I just lay completely flat.  The weirdest of all, though, was realised as I started to improve and connect with other people suffering from not only CFS/ME, but other autoimmune diseases.  All my life I’ve had terrible teeth.  By 6 years of age I had 5 holes in my baby teeth and when I returned to the dentist again at 15 years old, due to extreme fear of the place, I needed 11 fillings in my adult teeth.  This from the girl who ate heaps of calcium, brushed her teeth 3 times a day and wasn’t into sweets all that much.  It all made sense when my autoimmune affected friends and I concluded that, as they’d had similar experiences, it was a symptom of the illness sitting in our system.  I’m now 23 and have 14 fillings, (and 3 teeth that need filling).

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I’ve racked up a mental book of tricks that work for me through this illness.  Eating peanut butter out of the jar for a protein, fat, sugar and salt hit works a treat, as does vegemite under the tongue when feeling dizzy.  Not exercising if I can’t be bothered getting changed works.  For me, it also meant becoming a vegetarian as meat was too much work for my body to digest.  I also organise to meet friends either at my home or close to my home, which usually works if you offer to buy the coffee if they do the travel.  On coffee, I only drink decaf for the same reason I avoid sugar; the temporary high lasts about 1% of the time the extreme low will.  If I have a busy time, which now is a full day at work, I make an hour after I’m done to do 100% nothing before tackling the next task.  This means lying on my bed with a magazine, at most.  I don’t eat for 2 hours before I go to sleep or I don’t sleep well, and I have a regular sleeping pattern or I am more tired the next day.  Strangely, it’s harder to get through the day if I get over 8 hours sleep rather than under.  I also make an effort to keep calm and practise meditation a few days a week; nothing flares up my CFS/ME like stress.

The biggest lesson I’ve learnt from being so sick so young is to listen to your body.  Calories, physical fitness and weight do not matter one iota when your body needs rest and peanut butter to function, a doctor telling your you’re psychologically ill when you’re body is telling you something is physically wrong means you should get a second opinion and if you’re craving some odd food, even if it is a glass of wine, chances are a small amount is going to feel quite good.

Autoimmune disease is horrible, but I try to remember that science can only move forward, not backwards.

Natalie
http://www.lemon-butter.blogspot.com

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  • http://twitter.com/deansmum Chris

    Hi Nat and Sarah,

    Your two blogs are my favourites .. each blog is a part of my every day.
    I have told you both my story before, my son is an AI sufferer, and is the same age as
    you Nat.
    You have both offered guidance before and I just wanted to say how much
    I appreciate you both keeping the spotlight on AI. My son is doing okay, the drugs
    are slowly being reduced and at every dose drop, anxiety takes over waiting for any
    sign or change in his health. It has been 5 years now.
    Doctors appointments and blood tests no longer rule our lives, 3 monthly and 2 monthly respectively, a welcome break i can assure you.
    Thanks again for sharing your story Nat, and thank you Sarah for everything you do. It all
    makes living and caring for someone with AI easier.
    You two girls are at the top of my list as women who inspire me.
    A grateful Mum,
    Chris

    [Reply]

    Sarah

    Sarah Reply:

    Oh Chris, that’s so kind of you to say. Is your son Dean?

    [Reply]

  • steph

    Thanks for sharing, it makes me feel better to know that there are other people that have the same issues I have, each day we learn more and more about our bodies and what works, me must listen to ourselves and ignore the strange looks we get from others in doing so!

    [Reply]

  • http://twitter.com/deansmum Chris

    Hi Sarah,
    Dean is my eldest ( as in twitter name lol) but Paul is
    the one who has been living with AI for 5 yrs.
    I tweet you a bit … :)
    Chris

    [Reply]

  • Natalie

    Thank you so much Chris – I only just saw these comments and I can’t tell you how much I smile knowing that others don’t feel alone. As you know I wasn’t able to use a computer for a long time and I felt incredibly alone. I wouldn’t wish that on anybody.

    Listening to ourselves is definitely the best way to go, Sarah. I couldn’t care less about what others think! Shame it took me AI disease to realise that.

    [Reply]

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