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The Real Me

The real me EDS zebra Ehlers-Danlos Syndrome Blog

Sally-Ann EDS Ehler-Danlos SyndromeI’ve always loved finding about about myself. I was a shy child with hardly any dress sense (though very sensitive to irritating clothes). I matured late, have always been something of a tomboy and absolutely love stories, be it in books, in films or making them up with friends.

I had a career as a professional modelmaker and another in preschool education as a Montessori Directress. Unfortunately, despite however much I loved what I did, I could never seem to physically do it for long. There was an invisible barrier that I kept hitting time and again.

I look back and wonder how I managed to do what I did? With the companionship of a loving partner that I’ve known since our college days, a wonderful family and finding my creative outlet in Live Roleplaying for twenty years. I learned Reiki to cope with stress and became a Reiki Teacher.

A few years ago though, a cascade of symptoms began. Dizziness, fatigue, clumsiness, odd sensations…the list went on. It took three years to reach the root of all my problems – even ones from my childhood and young adult life finally got explained.

At first, I thought it was MS. It looked ever so much like it but the MRI said ‘within normal limits’ and the Neurologist said ‘Functional Neurological Disorder’. What’s that? In a nutshell, symptoms without a clearly discernable cause. Go to FNDHope to learn more.

After that, it was Chronic Fatigue Syndrome, for which I did a very good OT led therapy course and made a group of friends. We still meet up when we can. Generalised Anxiety Disorder along with historical (i.e. in childhood) Social Anxiety Disorder was diagnosed next.

Eventually, a trip to orthotics to get some new insoles that I’d been prescribed after the weight of pregnancy left my feet a funny shape, led to me being told – for the first time in my life – that I was hypermobile. Sure, Yoga and Tai Chi teachers had remarked on my flexibility and I just took it as a compliment, a positive trait. I had no idea…

The slew of symptoms kept increasing, my mobility kept decreasing, my cognitive abilities kept glitching and I had to know why. So, I chatted on forums. I researched. I looked for the right words to craft the best questions to present to my GP. I printed out information and asked his opinion. My ferreting of information and determination to know what my body was up to finally led me, at the age of 41, to get a confirmed diagnosis of EDS (Ehlers-Danlos Syndrome). That in turn led to a realisation that I just might be autistic (my doc said “Oh gosh, yes!” when I asked if I might have Asperger’s). I’m still waiting on that one.

Sally-Ann Zebras Bizarre EDSSo, in the past eight years I have survived a perilous labour (though sadly, my womb did not), become a proud mum, started two online shops, closed a Reiki Practice, gained clarity about my orientation (still happily with my college heartthrob though) and transitioned from able-bodied to disabled. I now do the school-run on two Smartcrutches with braces or my mobility scooter.

This is the real me. I love making jewellery but rarely wear it. I only dress up to do LRP or Steampunk and usually have a less mature hairdo than my now 7 year old. I love making friends but need plenty of solitude. I’m happy to offer my experience to others in the hope that they might find it helpful. Above all and quite aptly, I’m a Conscious Craftie. ♡

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From Private Detective to Carer and Artist

Dog pastel portrait, Bob Ashford

PetsPortraits4u : BobzzartAs a young man I trained for 5 years as a Ladies and Gents hairstylist in Leicester. My hobbies were fishing and Martial arts, i studied the Chinese martial art of Gung Fu and attained a black belt 3rd dan. After a few years I found myself working in Germany which I loved and my wife and children all joined me for a few years. It was on one of the journey’s to Germany that I first became aware of my neck problem, suffering terrific muscle spasms in my neck and shoulders, this continued for many years and the pain levels grew, on our return to England I had many hospital appointments, a CT scan and the diagnosis was “hot spots and irregularities in the C spine” (they gave really detailed diagnosis in the 70’s!). My problem was later diagnosed as Spondylosis or Spondylitis i can’t recall which! I was given Tramadol an opiate based pain killer and other pain relief which helped but did not take away all of the pain.

As the years went by the pain became stronger and ever present as it still is today, I recall myself sitting and crying in pain with my wife’s arms around me on many an evening after I finished work. By this time I had started two new companies away from hairdressing, one a Private Detective Agency the other a Security Company and was working 14/16 hours a day, fortunately I must have a strong constitution as I was always able to go to work and work through or in spite of the pain.

Dog Pastel Portrait, PetsPortraits4u
Dog Pastel Portrait

I spent several thousands of pounds over the years looking for alternative pain relief, having tried all the obvious, I went for energy healing and did find some relief and at about this time I also found a magic masseuse called Suzanne who like many are, was not afraid to go in deep, she was able to break up the tightly knotted muscles in my neck and shoulder after about a year of weekly visits, this allowed me to actually turn my neck a little from side to side after many years of not being able to, over the next few years my pain slowly went down a rung or two thanks to the healing and the marvellous masseuse I had found.
Having had “some relief” from pain for the first time in many many years I though that I could perhaps also help others that suffered with chronic pain and trained in Tera Mai Reiki Seichem becoming a Tera Mai Reiki Seichem Master and also as a Reconnective healing practitioner, through which I was over the years, able to give relief to many other chronic pain sufferers (but not myself!) mainly using Reconnective Healing energies which seemed more effective than Reiki.


Cat Pastel Portrait, PetsPortraits4u
Cat Pastel Portrait

In my retirement and still in pain 24/7 (and still something of a workaholic!) I caught up with an old school friend on friends reunited, she told me that she had MS of which I knew nothing, some years after this her husband passed away and some months later I was reasonably close to North Wales and arranged to meet with my friend from my school days for a meal, we got on well and I began to learn a little about MS. I started to visit her to help out on occasional weekends and at times when she had multiple medical appointments and seeing what she went through to be able to carry out the simplest little task really had me in awe of her single minded determination, the help visits became more regular and now I am her main carer, staying for perhaps a couple of weeks, enabling her to do the things she enjoys and get regular exercise sessions at the gym, then having a few days break before beginning again.

My friend actually classes herself as lucky, because although she has MS she suffers no pain, lots of other difficulties but no pain for which she is very grateful (but how anyone with MS can consider themselves lucky I don’t know) she has lost the use of her left arm and left leg, and struggles to manage even the simplest task, she has been a yoga teacher for over 30 years and still teaches from her wheel chair having adapted many exercises for chair bound people, she has taken over 700 yoga classes at the Neuro Therapy Centre near Chester and does everything she can to enable her to live an ordinary life. My heart often goes out to her as I see her struggle with a task, but I have now learnt the things that I must let her do herself despite how long it takes her or how difficult it is for her, it’s hard to watch sometimes knowing that I can do it for her, but she needs to do it herself, that was the most difficult thing for me to learn as a carer.

Horse Pastel Portrait, PetsPortraits4u
Horse Pastel Portrait

I find it very rewarding that I am now able to make life an awful lot easier for her, and enable her to live a normal (ish) life. I have free run of the kitchen which is great! I’m even allowed to do the washing up, although she says she occasionally has to re wash items!! It’s a man thing how we just leave an item with a stain or tiny bit of food on that a woman’s radar spots from 100 yards and we can’t see from six inches!

Anyway I have missed a bit out as before re meeting with my friend after many years, my masseuse told me on several occasions to ask my Doctor to test me for Fibromyalgia, when I finally got round to it I was given a positive diagnosis which explains all of the additional pain I have been getting over the last few years and the horrible tiredness and lack of energy, waking up feeling like a soggy sack, trying to remember what was a dream that you thought you had. It’s known as ‘Fibro Fog’ which is really weird sometimes, so caring for my friend although very difficult at times (as she really does not understand what pain is and why I can be so down and useless one day and ok another!) but it keeps me busy and I get an awful lot of satisfaction from being able to make her life easier, despite having lost the use of her left leg and arm she is always happy, cheerful and smiling. I find it amazing the way she copes with her disability and (most days) really enjoy being there for her.


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