So, where to start? I really don't know tbh. I guess I'd like this part of the site to be partly therapy for me and
partly information or whatever you want to call it. I just need to do this for me and if I can help someone else along
the way then so much the better! :o)
Maybe a good place to start would be to let you know about all the health problems I have to cope with every day and then
maybe a bit about how I cope with them and what I do to relieve the pain etc, then maybe go on to all the pills and
potions that I'm taking and all that kind of stuff?
I've been disabled since the Summer of 1999 - I kept being sick for seemingly no reason. The doctors thought I was
bulemic initially but I've never made myself sick in my life!
My health problems can be broken down into 2 categories - mental illness and physical illness, and then within
those they can be broken down into another 2 categories - diagnosed and undiagnosed. The undiagnosed stuff I put on here
is the things that I'm almost certain that I've got (if it's the name of a condition) or stuff that I live with and feel
24/7/365, but because my family doctor is more useless than a chocolate teapot, he hasn't given me an official diagnosis
for them yet.
OK, so my diagnosed mental health problems first (you can find out more about them and why I have the problems I do on my
mental illness page:
So, now that I've said about the mental illness stuff, let's move on to the physical illness stuff - the stuff that is
causing my disability.
My physical illnesses.
Hmmm. Where to start!! There's so many of them!! Officially, I've only been diagnosed with a few things, but I've also
been told by a Nutritionist that I'm allergic to 25 foods and food groups and the only reason I'm not including it as an
official diagnosis is because Dr Useless (my family doctor) "doesn't believe in food allergies". I'll talk a bit more
about that in a sec. In the mean time, here's a list of my diagnosed physical illnesses:
* Enlarged Spleen
* Very low white blood cell count
* Arthritis in my hands and feet
* Repetitive Strain Injury in both wrists
* Muscle weakness in left arm
* Severe Hayfever (I only get about 3 months a year without it)
These are my undiagnosed physical illnesses that I'm pretty certain I've got/I feel:
* Meniere's Disease (possibly - I'm not sure about this one... still trying to find out more info)
* Severe, unexplained, headaches and migraines
* Intense, severe, unexplained, back, stomach and chest pains
* Body gets so heavy I feel paralysed
* Involuntary muscle spasms
* Low blood pressure
* Low blood sugar
* Constant nausea (even after taking all allergen foods out of my diet)
* Heart Palpitations
* Can't breathe properly (tight chest, gasping for breath, wheezing etc)
* Extreme weakness - so bad that I find it hard to walk and can't keep my balance
* Liver problems (Not sure about this one either - I need to try and pluck up the courage to get myself tested
...and that little lot is just the tip of the iceberg!! Because all these things are so severe, I've become totally
reliant on my husband and I can't leave the house on my own. Whenever do* leave the house now, I'm in a wheelchair
(unless I'm feeling particularly stubborn in which case I regret *not* being in the chair in a very big way!). I'm
trying to find out about getting a carer for myself as my husband has a life of his own to lead without having to look
after me. I have to live my life without having a job and going to work, without seeing my friends and family and
without having a social life - I don't want my husband to miss out on all those things for himself just because of me.
I promised, up there ^^^, that I'd talk a bit more about my food allergies, so here we go! :o)
After being ill for 2.5 years I eventually got so fed up of not knowing what was wrong with me and my doctor was (and
still is) being as much help as a limp lettuce leaf, I decided to take the bull by the horns and work out for *myself*
what was wrong with me. I knew that I couldn't eat things that had dairy, starch, cheese or wheat in them and I'd
already taken all those things out of my diet, but I was still ill, so when I went into a Health Food shop one day and
saw a leaflet about Food Allergy testing, I thought to myself "this might be a good place to start" so I made an
appointment with the Nutritionist, payed my £40 and got myself tested. I don't know who was more shocked and surprised
by the results - me or the Nutritionist!! lol
By the end of the allergy test, I was told that I was allergic to 25 foods and everything within their food group and
anything that had been made as a result of the allergen food (for example, Citric Acid is made from Citrus fruit).
Most people who go for the test are only allergic to a handful of foods - 4 or 5 at most according to the Nutritionist
and that the number of foods I am allergic to is "extreme and *very* unusual"!!!
The allergy test results explained a lot and since I've found out what I'm allergic to, I avoid those foods like the
plague. It's harder than it sounds though.
Here's a list of all my food allergies:
* Coke (including Diet Coke, Caffine Free Coke, Sugar Free Coke - all kinds of Coke/Cola)
* All Alcohol
* All Citrus Fruit
If you'd like to get an idea of what it's like for me to live with 25 food allergies, I have a little challenge for you.
Using the list of my allergies above, try and find enough food, drink and snacks for you to live on for a week that
doesn't include any of the things on that list. That includes things like Citric Acid, Sodium Citrate, whole wheat
flour, wheat flour, brown flour, white flour, cocoa powder, lactose... you get the idea! :o) You'll need to check the
ingredients on *everything* and if there is something in there that I'm allergic to, then you should put it back - I have
In addition to the list of my allergies above, I'm also a vegetarian (so meat, poultry etc is out) and I can't have nuts
or fish of any kind.
If you *do* take up the challenge, I'd love to hear how you got on with it!! :o)
I saw a locum GP for something totally different a few years later and when I told them what my diagnosis was, they
asked when my last alcoholic drink had been, I told them 2002 and said I'd never even been drunk in my life, they said
I couldn't have it as only alcoholics have Korsakov syndrome.
I went home and cried my eyes out.
I spent the next decade searching for a diagnosis again.
Multiple Sclerosis? Nope.
The list went on and on!
My GP wrote to me just before he retired in 2013 saying that my diagnosis was Korsakov syndrome - the same diagnosis
I'd come out of hospital with originally!
After being disabled for a decade and a half, I finally have a diagnosis for everything... my symptoms have a name!
I've had a look online at the symptoms of Korsakov syndrome and I have all of them except the alcohol-based ones! I
thought the Hypothyroid symptoms matched mine but the Korsakov symptoms are me to a tee!
I take 8 supplements every morning and really feel yucky if I forget to take them! I take vitamin C with Rosehip, a
multivitamin, a teeny tiny dose of vitamin D (it's dangerous to take too much if you don't need it), vitamin B complex,
Selenium, Korean Ginseng and Ginkgo Biloba, Calcium with Magnesium and the last one is Methyl B12.
The mild brain damage accounts for my awful memory and I take the vitamin B12 to help with the depression but everything
else helps with my other symptoms.
From what I've read online and because I was so ill for so long before it was diagnosed and treated I'll never recover
fully - this is the best I'll be for the rest of my life... things will only get worse, not better, from now on :-(
Right now I leave the house for about 2 hours a *week*, twice a month (4 hours a month), so I'm saving up for an
electric wheelchair which means I'll hopefully be able to get out and about on my own again 'cos right now I can only
go to literally the end of the road with a quad cane alone right now! I'll be able to go into Gloucester again - I
can't remember what's down there, it's been so long since I last went there! I might be able to go into Cheltenham on
the bus alone too... it's been even longer since I went there! lol
I now take the pup out for longer walks than I did back when I originally wrote this, back in 2014. Her walks have
slowly increased to at least 25 metres a day which is 100% but I'm trying to slowly increase even that.
As of the beginning of January 2019 I'm determined to walk 400% (100 metres) every day. I still push myself
occasionally and I've now got a fitness tracker around my ankle, counting my steps. Steve set up a spreadsheet for me
to put my daily percentage of the pup's walk and the amount of steps I do every day and I'm gonna try and remember to
put the spreadsheet up first thing on a Monday morning, showing the previous week's exercise I'd done... you watch me
forget though! lol
I also take 4 supplements every morning now - Calcium (because of my dairy allergy), Iron (because I'm vegetarian),
B12 (because I was low last time it was tested) and a multivitamin (to top up anything my body is missing) so I still
rattle, just not as much lol.
I've come off the anti-depressant because it had lactose in the new recipe, so I came off it cold turkey in January 2018.
I still take the anti-psychotic though but want to try and reduce my dose a smidgen more 'cos I'm almost at the top dose
(it was reduced in 2018 'cos I was at the top dose) so that there's room to manouver if I need to increase it again in
future. I still need it 'cos I still get the paranoia warning claxon occasionally, I just want to reduce it as much as
I can while still being sane is all.
I've also semi got my freedom back 'cos I've got an electric wheelchair now - Patric the powerchair lol - which means I
can go into town on my own to get my sight tested and go to see the doc whenever I need to without relying on the
Things are going the right way for me now... I just hope things continue to improve for me, as long as I just take
things reeeeeally slooooowly!
This has just come up on my Facebook wall and it describes how I feel about my disability to a tee!
Conquering a very high anxiety level today - slopes in pavements. At the time of writing this (2nd October 2019 at 12.30pm)
I've walked up and down the slopes at the end of the road 20 times without falling over and not being able to get back up,
which is my biggest fear with them. When I came home I was shaking like a leaf but felt a huuuuge sense of achievement.
Then I saw this on Facebook, which sums up the exact reason I'm doing it:
December 2020 update
I'm currently in the process of updating my site, so thought I'd take the opportunity to update this page at the same time.
The official diagnosis for my main physical disability is Wernicke-Korsakov Encephalopathy which you apparently pronounce
as Vernika-Korsakov Enkefalopathy and I'm having tests on my memory as it's so shockingly bad. I've had blood tests for
some reason and I'm waiting to hear back from the doc to see what the next step is. It's only taken since 2002 to get
things moving lol
I've still got Patric the powerchair and I've been into town and to medical appointments and stuff in him, which there is
no way I could have done without him!
I take 7.5mg of antipsychotics each night, an anti-bladder pill every morning, Folic Acid three times a week as well as
Calcium & Magnesium each lunchtime, 5-HTP as needed (up to three times a day) now that I've stopped the anti-depressant, a
Multi-vitamin, Vitamin B complex and Iron every morning.
I think I've come to terms with the fact that I'll never recover and that I've had the best years of my life already :-(