My EDS Story - from an old website

*Bear in mind Mum died in 2016, some corrections have therefore been typed in.  But 99% is as it was on my old site.
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My EDS story:

I was born on the 13th November 1978.  There has always been debate as to how premature I was.  Sometimes it's 2 weeks+, other times it's just 2-3 days (not premature).  I was always small.  I always had eating problems, especially as I got older & developed a 7mm overbite.  I would always struggle to eat normally, sometimes being sick straight after.  

Up to the age of 16 I was going to Hospital & Clinic appointments for: bone age was a few years behind/dental (I had a removable brace as a kid)/my knees were always a problem/I had to have loads of blood tests all the time/height problems/weight problems etc.....  While I was at senior school I went on a work placement at an infant school.  I ended up just being there for 3 days, as opposed to the 2 weeks.  During those 3 days the kids would want me to play with them in the playground.  They would pull me by the arms.  

At night my right shoulder dislocated for the first time.  It was agony.  Because it was in the early hours I struggled to get it back in place myself.  I could literally only move my arm millimeters at a time, because of the pain.  I eventually got it into a more 'normal' position.  I then maneuvered it into place & heard the 'click' of it going back in place, it hurt like hell.  I then found an old sling I had.  

Parents obviously found out about it a few hours later.  My parents & I went to my senior school & 'had a chat' with my tutor etc...  It was agreed that I would spend the rest of the time helping my tutor out back at school.  My tutor & I did not get along.  I still got a certificate to say I did the full 2 weeks.  

Around the age of 16 Dr's etc.. couldn't really work out what more to do, so I was 'signed off' from everything.  When I finished school I went to college for a few years.  I then had a few part time type jobs, became unemployed.  I would then go to Kettering Job Search type 'clubs' via bus.  Because of my knee & shoulder problems I was assigned a DEA (Disability Employment Advisor) through the Job Center.  I was then, for a few years able to work in Wellingborough.  

I had regular reviews at work, with my DEA there.  Insurance company I was working for (at the time) was always happy & decided to take me on full time.  After a while my knees were becoming more problematic & I wasn't as able to walk to & from the bus stop.  Luckily I found a great taxi driver, Tony.  He agreed that he would take me in to work & bring me home every day for a reduced amount each way.  I worked there for about 18 months.  I left due to various reasons.

For the next few years I was once again unemployed & claiming JSA.  I then got a tutor job at a local PC Training Center.  I'd been there before as a student & I already knew the boss etc...  During the time that I was working there, my walking became much more difficult & painful.  It was normally a 10 minute walk max to or from work.  It ended up taking more like 30 minutes each way, as I had to keep stopping due to the pain.  I had to use a walking stick to get around.  At the time I was also setting up my own home business, Cyberward PC's (PC Tuition for the Elderly in Rushden).

During this time a colleague (Monique) asked if I knew about Reiki.  I hadn't heard of it before.  I had a free sample session.  After session I was able to ditch walking stick & run from one end of the building to the other (when boss called me in to her office).  For a while Monique also became my Reiki practitioner.  Mum also had a session & found it helped her.  Monique then would work on both of us.  Dad also had a free sample session & found it helped.  I then went online & after some searching I found Master Lee.  He was offering attunements to level 3 for free, for a short period.  Mum & I both were attuned to Usui Reiki Level 3 by Master Lee.

I have since been attuned to all 18 Usui Reiki Levels.  I have gotten big time in to Reiki, visit: my links section for files/info etc...  While working at the PC Training Center the student's became less & less. Eventually the center in Rushden closed down.  I couldn't go in as much for some time due to walking difficulties kicking in again.  I went full time in to running my home based business (the industry in Rushden is dead now (2022)) & I'd been getting further involved with Reiki.

My pain was getting worse & walking got increasingly more difficult.  My shoulder(s) continued to dislocate.  My left shoulder has dropped out twice.  My right shoulder has dislocated over 15 times, I've lost count.  I did have to go Hospital twice due to my right shoulder, as I couldn't get it back in place anymore.  As a result of the 1st Hospital trip I had to go to Physio at Rushden Hospital for a while.  While I was there, my Physio noticed my extended range of movement.  She mentioned it looked like I may have Ehlers-Danlos Syndrome.  When I got home I researched it loads.

I went to see my GP regarding getting an appointment with the Geneticist.  I went to appointment with my parents (as only Dad can drive) & Mum & I were diagnosed as having EDS3 on the 11th December 2009.  Mum (died in 2016) does have it less than me.  I'm now on Gabapentin & I'm reliant on at least 1 crutch when out & about.  I have since tried to raise awareness, as other sufferers do.  As not many people/Dr's etc... know about it.

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The 1-10 pain scale (10 being worst pain ever) is useless with me & Mum (who also had EDS 3).  On a bad day we normally would put it at more of a 15-16 (TOTAL agony).  On a good day we are usually at about 8-9.  Some days are really bad, often don't really want to get out of bed in the mornings.

You may also get regular 'Brain Fog'.  Brain Fog is common in EDS sufferers etc....  I often forget PC type stuff now, luckily not when I've had a client over.  You may have problems doing the simplest of things, like making a cup of coffee.  You may forget the mug.

Brain fog may be described as feelings of mental confusion or lack of mental clarity.  It is called brain fog because it can feel like a cloud that reduces your ability to think clearly.  It can cause a person to become forgetful, detached and often discouraged and depressed.

Symptoms of Brain Fog:

1.  Poor short term memory
2.  Difficulty learning new things
3.  Poor mental stamina & concentration - there may be difficulty reading a book or following a film story etc...
4.  Difficulty finding the right word
5.  Thinking one word, but saying another

Day to day you DON'T know how you will be, pain/fatigue/discomfort wise etc.

October 12th is World Arthritis Day - Also for those that suffer from EDS (wear your stripes on October 12th).

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If you are diagnosed with Ehlers Danlos there are a few things to think about.  You may need/want to buy (some are very expensive):
Strong Painkillers
Regular eye tests - As EDS can/does affect your eyesight
Books about Ehlers Danlos - There are some really good ones out there
Incontenance Products (due to bladder/bowel problems)
Adjustable Bed with built in massage (for constant aches/pains/sleeping problems etc...)
Medical ID Bracelet
Medical Wristbands
Crutches
Walking Sticks
Wheelchair
Scooter
Slings
Finger Splints
Etc....

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