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Updating doctors – history and progress December 2013

17 Dec 13
Megan
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So last Wednesday I had 2 doctors appointments in the one day. One of them was with my normal GP and the other was with the GP assigned by the insurance company to assess my claim for income protection insurance.

In preparing for the income protection insurance doctor I came to realise that my list of symptoms is a lot longer than I actually realised and when I actually try to explain how this has impacted me it actually sounds a lot worse than I care to admit to myself and others.

To be completely open about how this illness is affecting me, I thought I’d share that list of symptoms and some of the ways this illness is affecting me.

My Symptoms
  • abdominal pain (now down to 2/3 out of 10 with flares to 6/7 out of 10)
  • Muscle Pains (base level now 3/4 out of 10 with flares up to 7/8 out of 10)
    • started as ache then extreme pain on and off
    • mainly upper legs and upper arms
    • Increase at night
  • Feeling of heaviness most the time
  • Joint pains
    • Increase at night
  • Sore throat and swollen glands
  • Headaches (mainly 3/4 out of 10, occasionally up to 7/8 out of 10)
  • Dizziness, mainly on standing/sitting up
  • Double vision when driving/walking/moving
  • Other visual issues (spots/blurs) occasionally
  • Trouble remembering words and conversations
  • Extended period recovering from any activity
    • Increase of all symptoms that lasted 2-5 days after a half hour of activity
    • Tummy issues (constant changes in bowel movements)
    • Numbness/pins and needles, especially when staying still for a while
  • Heavy chest/trouble breathing occasionally
  • Nasal congestion (mainly at night)
  • cold extremities
  • can’t focus when lot of distractions
  • cognitive functioning issues – basic arithmetic, sentence structure
  • constant brain fog
  • appetite variability
  • short term memory really bad/long term memory better
  • Dry retching/vomiting
  • Loss of voice
  • Nausea
  • Loss of weight (due to nausea – got to under 50kg)
  • Sharp waves of pain (7/8 out of 10) through rib cage
  • Hot flushes
How does this affect me?
  • I’ve slowly worked up to 2-3 3min walks or 4 2min stationary bike rides a day and 1-2 5 min yoga sessions when beforehand I ran very good time in the 12 km city to bay and went to the gym at least 3 times a week and had been for 7 years, I also walked everyday
  • I can’t stand for more than 5min on a good time day symptoms start to increase and I feel a sudden urgency to sit down
  • I can stand for less than a minute in the shower so shower sitting on the ground
  • I struggle to get the right words out (sometimes even when they are written right in front of me) most of the time
  • I can only read up to 3 pages before forgetting what I’ve read and having to read again.
  • When using the computer my concentration fades away by around 15min
  • I didn’t drive for 6 months, since getting my glasses I can drive but only short distances, any  longer than 15 minutes and the pain and inability to focus get too high.
  • E has had to take over most of the house work and we’ve had to get cleaners in as I can’t do most of it. I have always been a very active person, not a couch potato
  • I used to cook and bake regularly, I now struggle to do more than 5min and have to sit on a stool while doing it
  • I’m not able to participate in evening activities organized by my friends and have to limit social visits to really close  friends
  • I can’t multitask any more
  • I need to rest every 1-3 hours, and spend at least 2.5 hours resting

I hope this gives everyone a better understanding of what I am going though, and what many others suffering from these conditions go through on a daily basis.

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