WHEELCHAIR WANDERER LOU
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HAPPY NEW YEAR FOR 2016

4/1/2016

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Boy will I be glad to say goodbye to 2015! Eleven out of the twelve months were shocking but the bonus was that December was fantastic.

A very quick summary of my year was something like this -
  •  JANUARY - The heat over the Summer months from January onwards sent the disease into overdrive and really affected the nerves, muscles and everything to the point that there was one day I had a spasm in my thigh, especially on the side all the way to my bottom for 16 hours. It nearly sent me mad!
  • FEBRUARY - I caught a cold which turned into bronchitis which I couldn't get rid of. Any other bug in my system send the NMO crazy.
  • MARCH - I'm out with friends in the city one day for lunch, and my wheelchair (brand new and now 8 months old) breaks down. It's turned into a rocking chair. I also went to the loo at Fed Square and as I was coming out of the building, through the badly visible sliding glass doors, I clipped the right one with my foot plate and it all fell apart! It was broken, so that went into my bag at the back of the chair. I couldn't get a cab so I tilted the chair and came home on the train giggling all the way as I had a foot dangling in the air and a chair that rocked like this video below. It was still under warranty however the company took their time in replacing the shock absorbers so I drove around in the tilted rocking chair at home for 5 days until it was fixed. 
  • MARCH, APRIL, MAY - I started to get ill in that I stopped eating, my body stopped working and I lost all muscle control. I slept for hours on end and had no energy. Plus my legs were very stiff as well which made transferring myself on and off the bed impossible and I needed to use my transfer machine to put me to bed. It came on slowly and by May I was shocking. By the time my 50th birthday came around, early May, I was very ill. I just made it to my 50th party but luckily I had Mum to help me out and some fabulous friends to enjoy the night with.
  • I TURNED 50 - and celebrated it with a fabulous party and many special friends.
  • Not only did I have health issues but I was dealing with EQUIPMENT ISSUES as well. MY BED, WHEELCHAIR AND BIKE that were all new pieces of equipment but poorly designed by people who don't consult with people who use it. 
  • I was also dealing with a new financial advisor who needed certain documents read, signed, scanned and emailed back. 
  • And all the social media sites I run, and so much more.
  • MAY (STILL) - On the 8th May I had my first ever IRON TRANSFUSION as my levels were very, very low. That went well until the day after, I couldn't get out of bed! I had lost all my strength and my muscles were like jelly, I couldn't sit up! I have a carer who comes in every morning at 9 am and helps me mostly dress. They are here for 45 minutes. All I did for 2 weeks was shower and sleep. I ate very little and that almost went on for a month. Mum was fantastic in looking after me and I would have been lost without her. I had extra assistance from carers at lunch time to make me lunch and then get up for about 20 minutes and put me back to bed. It was a shocking time as my neurologist couldn't tell me what had happened nor my GP. Eventually I started exercising again as I knew I had to get that going or else I was in trouble. It probably took 3 - 4 months to get back on track. As a result of the iron I then had terrible problem with constipation and that caused all kinds of issues for months. One day I'll write a blog on how my body doesn't work and what I need to do to make it work.
  • JUNE - I am getting stronger every day and feeling great, have cabin fever so I'm out and about again driving in the chair to Camberwell, on the train to the city and where ever, the bus, you name it. I come home one day and as I'm coming down my driveway, the chair starts to rock again! Three months later and the part has gone again. I worn't go into that loooooooooong story.
  • JULY, AUGUST, SEPTEMBER, OCTOBER, NOVEMBER - I dealt with my wheelchair issues (the same thing) for all those months) until the US company that makes them ($14,000 AUD chair) discovered a fault in the balance and produced a part to fix it. 
  • I also had severe food poisoning that went on for 2 months to get my tummy and bowels working properly. 
  • I finally got the issue fixed on my bike (which was happening every 3 months, purchased brand new $9k from Germany in March '15) fixed, and the very noisy, squeaking brand new bed fixed.
  • I cut all ties with my Financial guy (taken on in March) and manage all my funds etc myself and will save $4.5k next year, yeeeyyy.
  • DECEMBER - My carer who looks after me 5 days a week in the morning whom I've known for 4 years retired. I wasn't sad as we are great friends and will stay in touch, I just knew I wouldn't get anyone else who goes above and beyond as she did. Plus I'd be training a heap of new people my morning routine, and with Christmas coming up, and people taking leave, it would be a revolving door of different people to care for me in the morning and much training needed. 
  • So CHANGE rolled into my life and I thought I'd try the council for care and cleaning and save some money. Personal care for 45 minutes each morning, 7 days a week costs about $18,000 per year. A 45 minute shift with a private company is about $47, and the council about $6. Much money to be saved. The council starts on January 4th.
  • Some gorgeous friends from many years ago contacted me as did I contact some of my old friends. I had lunches to go to, friends to celebrate with and one of my best buddies to see who now lives in Zurich was here. It was a great months and way to end 2015.  
I think 2016 will be amazing as CHANGE seems to be happening in my life, not that all will change but I am always optimistic xx
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    In a wheelchair permanently since early 2010 due to a disease called NMO. I am loving getting out and about in my wheels. My blogs capture my journey. 

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  • Home
  • BLOG
  • MY STORY
    • SIDE EFFECTS OF NMO
    • CHALLENGES WITH NMO
  • WHAT IS NMO
    • SUPPORT
    • TREATMENT
    • RESEARCH
  • OTHER SITES OF INTEREST
  • LIVING AS A PARAPLEGIC
    • Daily Exercise Routine
    • Transferring
    • Being Indepenent
  • PHOTOGRAPHY
    • iPHONE PHOTOS
    • JAPANESE GARDEN PHOTOS
    • JAPANESE GARDEN PAGE TWO
    • NATIVE GARDEN PHOTOS
    • SECOND PAGE NATIVE GARDEN PHOTOGRAPHS
  • Dogs I Meet Along the Way
  • YOUTUBE VIDEOS
  • NEW ZEALAND CRUISE
    • CABIN PHOTOS >
      • INSIDE THE SHIP
      • DECK PHOTOS
      • FOOD
      • AUCKLAND PHOTOS
      • TAURANGA
      • GISBORNE
      • WELLINGTON
      • AKAROA
      • DUNEDIN
      • FIORDLAND NATIONAL PARK
      • PHOTOS OF US & OTHERS
      • AMAZING SUNSETS
      • WATER
      • VIDEO CLIPS