Contrary to the impression this website might give, I do not like to complain. In my day to day life there are a lot of things I have to deal with, that most people don't.
I have been patient with the NHS, but it is getting me down having felt so ill for so long now, and having got more and more disabled, this is not how I want to live my life.
When I am feeling less ill problems and mobility struggles are easier to cope with. Equally if I had a suitable wheelchair I would be in less pain & be less fatigued.
If my brain function would improve I could watch documentary's and actually remember facts, or be up to concentrating on reading, even chatting with people without being exhausted after an hour.
Even if I can not do what I dream of doing, being an infant school Teacher, being up to volunteering part time and working with children would mean a lot. But I can not while I am so ill and not getting any (effective) treatment from the NHS.
What I am like today is a watered down version of who I used to be...
There are many parts to me that are on pause, I feel I still have them but I can not access them at the moment, whether that be memory, or ice skating skills, it is a sad fact that I am a shadow of my former self.
People who meet me for the first time now may not realize anything is wrong (cognitively speaking) but without sounding narcissistic, they do not realize how much better I used to be. I am particularly grateful to my family & my best friend whom I have known all my life, who remember who I was but also accept me as I am now.
Even when I am having a 'good day' my humor is not as good as it was, my verbal skills sub-par, my intellect is greatly lacking, I can strip wash but still need help in the bath & with my hair...I feel like a little dried up raisin that needs to get re-hydrated back to life!
I will try my best to explain how my ill health/disability effects me and my life:
When people see me, physically I look ok (apart from being relined on my hospital bed), which means that people don’t understand how much my consistent ill health is impacting on my life; take into consideration the other 95% of the time you don’t see me, the likely hood is that I will be lying on or in my bed, struggling to stay conscious, forcing myself to eat & drink, popping joints back in place myself, being in varying pain, fainting & unable to move more than the occasional wheelchair trip to the toilet.
This is how I traveled when I was well enough to attend college & walk about (2008)... This is a photo a college friend took of me on a Train >>>
<<< This is me traveling to one of many hospital appointments (2010) My mum took this photo, she was also designated- wake me up 20 minutes before we arrive so I can get my brain in & slap some make up on!
Someone else who has EDS recently described the everyday struggle we have, as a healthy person constantly being on a treadmill.
"Everything you can do without thinking, such as sitting up, standing up, or getting a shower, takes 10x more effort for
someone with EDS.
And after I have exerted myself, I feel as is I have just been running on a treadmill. That is how I feel everyday, to varying degrees. I physically push myself every day; but sometimes its just too much to ask of my body, so I have to just lie there, hardly able to move."
A lot of my symptoms overlap, infections, POTS and EDS can cause you to need a lot of sleep, POTS and EDS can cause weakness and make you extremely tired, cause gastro problems etc. A lot of the time it is hard to know what symptom to attribute to which problem.
But it makes finding disability aids much harder!
This is a photo of me with a friend from when I was doing my childcare & education college course in 2011. The t-shirt is perfect don't you think?!
This is another picture showing good hight comparison, my friend was closely examining my necklace.
This is a photo from 2011 when I could still walk, it features me (tall) next to a soft toy camel (very tall!)
Why are all disability aids aimed at averaged sized people?!
I did not realize, before I tried them out that practically all disability products are aimed at the average Joe, or Joanne. Everything is designed for people shorter than me!
I just don't understand, there must be men who have the same problem, although I admit I am probably more "leggy" than them.
I can go into a shop and try every chair in the place, and they are all too small! I feel like a gargantuan version of Goldilocks.
They NHS just gives me chair raisers and says make do. But that doesn't help with the fact that the chair just isn't deep enough for my long thighs and they aren't fully supported, meaning I take more weight in my knees and ankles than I need to, and cant fully relax my legs, causing more pain and discomfort. Nor the fact that as the upper part of my arms are so long that ALL armrests are too high up, which causes my shoulders to be pushed up and caused me shoulder and neck pain, & my shoulders to try and pop out of my torso. Or that the back is either too low down, or not in the right place, chairs are curved to suit people spines, sitting in the wrong place is like... wearing trousers where the knees are half way down your calves, you can manage to make it fit, but it sure isn't comfortable!
Finding a wheelchair on the NHS that sort of fits was near impossible, I have the "tall" version of the quickie and its still not "tall" enough, they need to do an extra tall, like Next jeans!
No scooters would fit me, unless they are golf cart size! Splints are just too short, crutches has to be specially ordered in, in "tall", everything is too low down for me to sit in, and especially stand up from, its just added hassle being me, especially not being wide, just tall.
To make it worse, when I do eventually find something to fit, often I cant afford it because it's custom built, and as my mum says "they make yo pay through the nose for it" although I am not sure where the idiom originates, I know its painful/impossible!
It's not just tall clothes that are expensive, everything tall is more expensive, including wheelchairs!
Here is me trying out a chair that is supposed to be easier to get in and out of- and be supportive, it would if
the seat was
deeper, and the beck was higher, and the seat was higher up if it was bigger and Sammy-sized!
I have three main chronic medical conditions, which effect my life on a daily basis, here I will give you more information about them:
Ehlers Danlos Syndrome
I have been diagnosed with Ehlers Danlos type three, also called Hypermobility Syndrome by some doctors. (there is opposing views within the medical community on whether they are the same conditions and whether they should be classed as the same thing.)
It is only recently that it is being explored by medical professionals, you may be familiar with Cherylee Houston who plays Izzy Armstrong on Coronation Street, she has Ehlers Danlos syndrome.
This explains a lot of symptoms I have had since I was about 10 which were put down to "growing pains" by my doctors, which I continued to get even thought I stopped growing...
I have a lot of pain, some actual joint pain but a lot of muscle pain and tendon pains. I "crack" my joints, not to appear cool, but to put my body back in alignment, like a chiropractor, but cheaper! I have two scoliosis (sidewise wonky spine) and have a *edit, now two* slight kyphosis (quasimod-esque hunchback) and my back gets very stiff but the angle is dramatically reduced after a visit to the osteopaths:)
Some of my joints sublux, well all of them to some degree- except my elbows^^, but my left shoulder and right hip often try to escape form their socket. Some people with EDS have many dislocations a day, thankfully this has hardly happened with me, but I am still in pain.
Recently I have had to begun to take more painkillers as my pain has increased over the last year especially. Apparently EDS can get a lot worse to people in their 20's, something I would have greatly appreciate being forewarned about!!!
(I am going to attend a pain clinic to see if they can advise me on which painkillers are most effective for different pains, for example a doctor told me that diclophenac is better than codine for tackling kidney pain.)
People with Ehlers Danlos often have less stamina than other people, and get tired very easily. It deffintly impacts on my energy levels and I can not manage a full day out, and if I do something i.e. go to a hospital appointment, or go to Asda, the next couple of days after I will be either sleeping, or so tired I am unable to get out of bed. Everything takes me a lot of effort and all of that effort tires me out; I feel like my battery's are never fully charged when I wake, and they drain very quickly.
My shoulders are very sore and try to dislocate. My left shoulder used to cause the most pain, and I had assumed it had just deteriorated as some joints do, but sometimes I lean at an odd angle to put my glass of water back down on my bedside table and my shoulder makes a loud "clunk" and I physically feel it move back in place. Initially after when I move my arm and there is hardly any pain, at all! Unfortunutly this does not last, and both shoulders sit too far forwards and my back muscles are too weak to hold them in the correct position. When I had an appointment with my local rheumatologist I asked him if he could suggest anything that coudl help, and just said no, in a very long winded kind of way.
Which leads me on to realigning myself/reducing pain. Although it is not known what makes the 'cracking' or 'popping' noises, often heard in peoples fingers. Some think it is air, some think it is fluid, some think it is tendon moving, doctors can not decide, but most agree that it is not harmful and will nto cause arthritis.
I know that "clicking" in a lot of areas of my body reduces my pain significantly. I pay to see an osteopath once a month who is wonderful. (the same one mentioned in the expenditures rant further down the page)
My wrists, especially my right one are very painfull unless they are parallel to my forarm, my god-mother bought me a splint but it held my hand slightly invertet, and become sore, to my surprise when I removed the support I had a bruise where it had been hurting. After a few hours it became uncomfortable to wear the wrist support anyway as I have smallish wrists and giant hands, so unfortuntly I haven't been able to use it, or find another to fit.
I experience a lot of bowel problems, as do a lot of people who have EDs and a lot of people who have POTS. I have pains, cramps, fainting, constipation, diarrhea, slow transit time, and gastroperisis. The doctors test me for crohn's (as my mum has it) and for celiac disease, but I dont have those, so they don't know how to help me. So far I m taking senokot, prucalopride, imodium, bisacoldyl, painkillers (which mean I have to take more laxatives) and buscopan.
I get a lot of migraines, at first migralived worked, then that stopped beign effective so I began taking sumatriptan, that got rid of my migraines and my awful sound sensitivity (which I have had to some degree for years) and now I am having to take sumatriptan nearly ever day and it dosent get rid of my migraines completely, and just makes my sound sensitivity less acute. I am have tried some preventative migraine medication, such as amitriptyline, but it made me have awful tremors, which i suffer from anyway, but this made it 10x's worse, so I trued another one, which did not help with my symptoms. So I am at a loss what to do, I jsut take supatriptian if my head us really bad.
I have a jaw which makes a loud clunking sound, is very stiff and causes a lot of muscle pain in my face/head and subluxes. But I have found nothing which helps. I actually think my pronunciation has become less clear since my mouth movement has become more restricted. So far doctors have been able to tell me it is my TMJ joint, but can not come up with anything to help. One insisted I must bite my nails or pen lids, and would not take no for an answer!
Finally teeth, I have a lot of fillings, people with Ehlers Danlos can have weaker teeth, and that is certainly the case with me, I have had to get some re-filled, some crack and others get, what feels like, sucked out by food, I was innocently eating a lovely Bassetts Minty Toffee sweet and my filling got yanked out! Of course the NHS only do metal ones as standard, so I have has some drilled out, then refilled, than have to go back again and only then sometimes do they give me a white one- which as all dental peeps know are stronger and stay in place better *sigh*.
I have a tooth that gives me pain whenever I chew on it, I went back and back to my dentist, to be fair she did give me an x-ray but when she could see nothing she drilled my old filling out and re-filled it, then when I kept complaining she kept re-drilling and re-filling, I had no better suggestion so went along with it, about 4 times. When I stopped further education and had to pay for my NHS dentist, I though why not pay a bit more and go privately, and I am SO glad I did.
In one visit this new private dentist found the problem, its that the tooth is so thin and weak that it is flexing or "buckling" as she calls it, so causing me pain, she got me to bite down on a little plastic thing to confirm, and sure enough it re created the pain. So each time I got my filling drilled out and refilled, leaving less tooth and more filling, it was making the problem worse!
This private dentist is so good, she explained everything to me, and answered any questions, and admitted when she didn't know. I wish I had gone privately sooner, I didn't realise how rubbish my NHS dentist is until I found better. I just wish I had more spare money and I would get more work done, some to fix new problems, other work to try and correct some work done by my old dentist, but some damage, such as drilling away tooth un-necessarily can not be undone.
Unfortuntly with EDS patients the earlier the corect treatment, the less problems later, e.g. if I had a brace on in my teens, my spine would be more straight now) but unfortuntly it often takes years for people to get diagnosed with EDS. Never mind how long to get the corect treatment. This is why I want to go priveatly and see the renound specalists NOW, not wait. As the more time that goes by, the worse i get.
Postural Orthostatic Tachycardia Syndrome
My POTS effects me whenever I am standing, and sometimes when I am sitting; It varies in its severity, but (for now) it effects me every time I am upright.
It is short for Postural Orthostatic Tachycardia Syndrome.
The longer I am on my feet the worse the symptoms get. If I stand still my heart races and I feel faint very quickly, my legs become extremely weak then my vision goes all colourful and blotchy, then I faint. If I move about I can get away with being on my feet for longer, but my heart races and I get very hot and sweaty (to look at me you would think I have just ran a marathon) I regularly get short of breath and I often get very pale, (which is odd as I am so blinking hot) then I get the colourful blotchy vision and faint.
When I start to feel faint I sit down, and sometimes when my vision starts going I have to lie down. Usually the symptoms will wear off in about 10-15 minutes, but if I have been expending more energy the effects can take a couple of hours to wear off.
It also causes headaches, migraines, palpitations (visible ribcage earthquake ones) chronic fatigue, shortness of breath, brain- fog (grr-argh),bad memory, shakiness, gut problems, weakness, tiredness, insomnia, fainting, etc. See http://www.potsuk.org/ for a list of common symptoms and more information.
Heat and humidity makes my POTS symptoms a lot worse and makes me deteriorate much faster than usual. Apparently so does dehydration, but this only becomes a problem after I have been unconscious for hours on end, mostly I am as hydrated as a camel!
It takes a lot of people a long time before POTS is diagnosed, for me it took about 8 years since the first on set of symptoms, I recently found out, when reading my medical records, that I got a diagnosis of panic attacks, even though I distinctly remember saying that I didn't feel nervous, or scared, the doctor must have thought I had a standing phobia! (Side note I was never offered any mental help to assist with his "panic attack" diagnosis)
More recently, as my mobility has decreased my POTS has been effecting me when I am sitting up, so I have had to lie down a lot more, which is irritating as since I haven't had a kidney infection in months, so I feel like doing things, but my POTS prevents me, but I have caught up on lot of phone calls!
I have recently found out, but talking to other "potsies" that when I feel ill- just like having the flu, and that my body is shutting down- is probably my POTS making me feel like this. I have felt like this a lot for about 4 years, and it is occouring more often. When my POTS symptoms are not so bad (not fainting, normal vision) I usually feel better in myself. So i really hope my POTS can get better, so I am able to be upright and enjoy myself rather than wishing I was lying down so I feel slightly better.
Kidney Stones and Infections
My kidney problems began when I was about 17, I am not sure which started first, the kidney stones or the infection, or which is causing the other currently, and neither do the doctors.
Anyone who has had a UTI will know that it is unpleasant, mainly the feeling ill. Anyone who has had a kidney infection, then you will understand how rubbish you feel and how hard It is to function, I feel like this nearly all of the time. I feel like I have flu (real flu not a little cold wimps complain about) or like a hangover 24/7, ironically I never drink.
Now imagine getting this all the time- that's what it is like for me. With the added pain of... I am not sure how to describe it, but kidney stone pain, I am sure you will know it is extreamly painfull.
I have a constant infection in my kidney (occasionally descending to my bladder) and have been on a prophylactic antibiotics for about... two or three years, ish.
When I wasn't on the antibiotics I would regularly have the symptoms of a kidney infection, or at least UTI, but when I sent a urine sample off to the labs it would never culture anything, as if the infection originates and stays in the kidney, then the little bugs don't want to wander downstream. And as my urologist says, if I am drinking a lot, which I always try to do, the infection will be watered down.
So no-one knows the cause, or how to stop the infection, so for now I am on antibiotics, which are a bit hit and miss, I have to keep changing the dose, and they type, trimethrompim and ciprofloxacin seem to work the best, and they give me awful insomnia. But at the moment I am putting up with it rather them being really ill the majority of the time. I just hope my body doesn't become immune to the antibiotics otherwise I would be s...tuck.
I have had a lot of kidney stones (which has just recently been proved to in-fact be stones). Before seeing an actual stone lying in the toilet staring up at me, my diagnosis was just "intermittent right loin pain" where I was regularly taking paracetamol, codine, diclophenac and tramadol for, all at once. And had to go to A&E or be admitted to hospital for morphine injection, as I took the maximum dosage of all of those drugs and STILL had an unbearable pain.
The worse pain I have ever had in my life was, a kidney stone being stuck and completely blocking my ureter so my water was sitting behind it pushing to get out of my kidney, and my kidney was spazaming trying to push the water out of it. I was writhing about on my bed doing a good impression of Emily Rose!
One doctors actually took a lot of convincing that I wasn't pregnant, and was in no way about to give birth. If the GP had come and offered me the choice of gold bars or morphine, I would have had no hesitation in taking the morphine. The only shame is they discharged me after a day and the whole thing had to be repeated again the next day-.-'
Whilst I was in hospital apart from giving me painkillers, the doctors did nothing; real life is unfortunately not like Holby City! :(
Actually they did do an IVP which showed that my right troublesome kidney was draining a heck of a low slower than my left, but they didn't know why, and decided it "wasn't significant".
As I am tall I was told it was muscular pain for years. Even though I was nearly fainting with the pain, being sick and had my college friends so worried they were going to call an ambulance in the middle of Mc Donalds! Pretty hard core muscle pain docs.
If they had believed it was my kidney from the start then I might have been saved a lot of episodes of illness and pain, and be closer to the most effective treatment plan by now *sigh* but better late than never.
My type of kidney stones don't show up on scan, CT, ultrasound, x-ray, I've had them all! But one IVP I had did show that my right kidney drains a lot more slowly than its unaffected left friend.
I am still hopeful that someone can find out what is causing the infection and stones, and know how to get rid of them. The past 7 years and about 8 urologists +A&E staff have proved that NHS doctors can not help relive my kidney infection.
I have no family history of kidney stones, and I am young and female, so its unusual for my demographic to get stones. Also they are reluctant to test stones that don't show up on scans, so for now I am staying on antibiotics and waiting to get another stone so I can catch it and send it off to get examined.
And also obviously saving up money to go and see someone who might be able to help.
To anyone reading this who suffers from any of the same problems I have...
* infomation about missshaped leg: E.g. Nearly 4 years ago I stood up from my bed & was in agony in my left knee. I was instantly unable to straighten my left leg, & could not put any significant weight on it without pain.
I figured somethign must have moved (as joints, tendond & muscles often have to be manually put back in place for me) but after a month the severe pain had reduced but I was still in pain evertime I put weight through the leg & was unable to straighten it.
An NHS physio, who was not specialized in EDS, suggested crutches (as back then I could still walk a bit). I used them for about 6 months and in that time my shoulders become significantly more painful and less stable, and my right leg, at my thigh bone and lower leg bones, became twisted inwards.
Due to the shoulder pain I stopped using the crutches, and since then my mobility has decreased to the point where I need to use a wheelchair nearly all of the time. But my right leg is still twisted in, and no-one I have seen (on the NHS) has been able to suggest how to get it back to being straight.
Nor can anyone tell me what is the matter with my knee, I still can not straighten it, or put any weight on it. Unlike non EDS people, mine does not "spring" back to how it should be, we need to actively do something to put it back, or keep in it place. But I need advice on what to do/ how to do it. This is where not regular doctors, and the NHS "specialists" have been unable to help.
If anyone has got a theory on what is the problem deep in the joint of my knee which is preventing it from straightening & causing severe pain I would like to hear your suggestion.