Danielle’s Story

Hello,

My name is Danielle and I am 30 years old.

I was born three months early, and I am blind as a result. I spend the first three months of my life in special care.

Throughout my early childhood, I had three sets of gromits in my ears.

I first got ill after an ear operation to patch my eardrum after the removal of my last gromits, when I was nine years old, in 1993.
I didn’t manage to actually put all the pieces together of the story
until 2010, when I was talking to my mum about it. It was all there in
my head, but I don’t think I saw it as real until it all actually came out
of my mouth and I realised I’d known all along.

I think I had some kind of reaction to the anaesthetic. I remember waking up
and literally feeling like I had been run over. I was nine years old though,
I didn’t know that wasn’t normal. I was hallucinating and I remember losing
count of the amount of times I was sick when it got past the eighth time. I
remember they put me on a drip.

When I was discharged the day after, I remember laying down on the back seat
of the taxi home, with my head on my mum’s lap. Every part of me hurt, I
couldn’t sit up and the room spun when I stood. I had a terribly sore
throat. I remember not being able to get up the stairs to my bedroom. I
slept on the sofa, the first night I got home. I have no memory of how long
that lasted for. I only remember the first night. The subsequent days, I can
recall nothing about.

I don’t think I even told my parents how I was feeling at the time. I was
never really one to complain as a child. I just thought everyone felt like
this after operations

I remember having to keep the bandages on for six weeks after the
operation.during that time, I came down with tonsillitis. I was
given antibiotics and we thought it had gone away, but I remember waking up
early one morning with a dreadfully sore throat again. It was agony. I know
the two things coincided, because the way I had slept made my
bandage start to come off so my mum had to sort it out for me.

I remember after all of this getting back to, what I assumed was normal. I
have no idea whether it was or not, why would I? The one thing I do know is,
that year, and every year after up until I was twelve or thirteen, I had the
flu jab at school and I was always ill afterwards whereas everyone else was
ok. I think they just thought I was a winjer. Every time I had that dratted injection, I could pretty much set my watch alarm and depend on the reality that, in no more than half an hour, I would be bent double with excruciating stomach cranps.

I remember when I was eleven having the measles vaccination. It was just
before Christmas, and we were rehearsing for the Christmas play, in which I
had the lead role that year.

I felt so weak and just generally unwell. I recognise that feeling now,
thinking back on it, but at the time, I had no idea what was wrong with me.
There was a table at the back of the stage. I just sat down on it when it
wasn’t my turn. the teachers kept shouting at me to stand up. I don’t think
they realised I didn’t feel well until I was told to go off stage in to the
wings and wait to be called on. One of the teachers came in and found me
sitting on a guitar amp of all things, crying.

I don’t remember how long that lasted either, I just know that it happened.

About a year after my operation, I started having severe migraines. The
remainder of my sight would just black out for about half an hour before the
headache and vomiting came. I remember the first time that happened. I was
terrified. I thought I’d just lost the remainder of my sight forever. I told
my teacher, and she said I looked pale, but that was the extent of it. She
didn’t seem to care that I was telling her that the lights had just gone
out. I can’t believe that, thinking about it now. Why on earth was I made to
stay at school? How could you not take something like that seriously? I
wasn’t sick the first time, so I guess they just thought I was making stuff
up or something

After that first time, the migraines came sometimes weekly, sometimes less.
I was always sick every time after the first one. They couldn’t tell me I
was ok when I was vomiting, I don’t think even they could ignore that… The
frequency of these slowed down when I was about thirteen, thank god. I have
had a few since, but really and truly, that specific type of migraine
happens next to never now.

With secondary school, came the beginning of my problems staying awake. I
would walk from lesson to lesson, not being able to wait to get there so I
could just put my head back down on a desk and sleep again. The only
subjects I managed to stay awake for were French and music, my favourites,
and maths, where you weren’t given the chance to sit and do nothing.

When it came to revising for my GCSE’s, I honestly don’t know how I got
through them. In fact, that’s not quite true, I have a suspicion, but it’s
no more than that. We were lucky at school, our teachers would make us tapes
with the most important points on them. I used to just put them on and fall
asleep. This is why I strongly believe that there is something in the claim
that you can learn a lot while you are asleep. By this point, my
concentration was appalling. I don’t actually believe that I deserved
to pass anything, but I did, with the one exception. Ironically, maths.

So then came college and that came with it’s own whole host of problems.
Whereas I had gone to a specialist school for the blind and partially sighted, I
now found myself in the situation where I was at a residential college,
attached to my school, but integrated in to the local college. People on my course were nice enough, actually in class, but I couldn’t even hope for an answer if I said hello to them elsewhere. When you add the fact that the computer software was completely inaccessible so I couldn’t do my practical work on my own, plus the fact that I didn’t
have any books at all until just before Christmas in a format I could read,
I think it’s totally justifiable that I was stressed out… However, with my first exam of the year passed with distinction, and my first practical not only over with but also a great success, I thought maybe it’d be ok.

I look back on it now and find it ironically amusing that it was just when I
thought I could carry on, that my body went in to meltdown and stopped me
in my tracks. I started having panic attacks. I remember, Again, I couldn’t
stay awake, I constantly overslept and missed college, was ill ninety
percent of the time with everything and anything… That sounds like an
exaggeration, I wish it was, and I ended up dropping out.

I was appalled at myself. I’d never given up on anything in my life. I couldn’t understand what was going on with me. I was so unbelievably angry with myself. I’ve never felt that
angry at another person. I can’t even compare it to anything. I think that
was when I started hating myself. To me, dropping out meant I was a failure,
something that I had always sworn I’d never be. I should have tried harder,
stopped moping around, like I was the only one who had ever felt ill in the
world, like I was the only one with a problem.

I didn’t know what to do next and, as a result, spent the next six months
living day to day. Pretending to be happy, screaming inside because I felt
like I’d completely lost control of where I was going.

In the October of 2001, I had a medical procedure which really kicked off my anxiety again. I think I must have been in my doctor’s surgery practically every week from then until mid January.

Mid November, it was actually my mum’s birthday, I started being sick for no
reason. I felt like I had flu and I just couldn’t stay awake. I was taken to
see an on call doctor, it was a Saturday night, I don’t know why I remember
that. He told me that there was nothing wrong with me – that it was all in
my head. He gave me tablets to take to stop me being sick, and just sent me
home, telling me to go and see a counsellor.

That Christmas was the worst I ever had. I spent it at my boyfriend’s with
him and his family. I still felt like I had flu, and spent the whole of
Christmas day in bed. He told me that I was pathetic, that I was just doing
it for attention, and that I needed to get a grip. I told him I couldn’t help it… He didn’t believe me. I wanted to go home so badly, but it was Christmas day. There were no trains. Most of boxing day, I spent asleep, and the day after that, I went home.

It got to mid January, and somehow I ended up at the doctors again. I can’t
remember whether it was my choice, or just that my mum got fed up with what
was going on and having no answers. I went in to see the doctor, she asked
me what seemed to be the problem, and I just sat there and cried. I didn’t
know where to start, with the fact that my head was like some kind of train
wreck, or that I couldn’t stay awake, or that I felt like I’d had flu for
the last four months. She didn’t even examine me. All she said was, “I think
I need to refer you to a counsellor and in the meantime, I’d like you to go
on antidepressants.”

I couldn’t believe what was happening. Eighteen years old, and being asked to
go on antidepressants. I just thought, well that’s it then. I’ve been right
all along. I must be mad. I was so scared, that I didn’t even question it. I
accepted the tablets.

To some degree, they were useful. They certainly calmed down my extra
specially overactive imagination. I still felt ill, but it was like I’d
almost got used to it. Maybe I’d taken what the doctor back in November had
said to me to heart. I decided that it just must be all in my head, so it
was about time I just shut up going on about it.

With March that year, came the time I knew I had to start doing something
with my life. I ended up agreeing to a twelve week personal development
course which was run by the Prince’s Trust. I started to feel vaguely like
life was worth living again. I got on with people. I enjoyed myself. I
started counselling. I don’t think my boyfriend liked the fact that I was
trying to sort my life out, for whatever reason. We broke up in the April. I
decided while I was still with the Prince’s Trust that I had to go back to
college. They were able to help me start sorting that out so it could become
a reality in the September of that year. Counselling was definitely useful,
though now, I don’t remember much about it at all. The one thing I do
remember though, is that I vowed to myself that if or when I chose to have
children in the future, there was no way it was gunna happen until I’d
sorted myself out, finished college, done whatever after, and hopefully,
worked for a few years.

As far as college went, the usual stress of not being able to read the
textbooks, usually until weeks after I needed to, continued. Noone really
ever talked to me, but I didn’t care at all. I was doing what I’d promised
myself I would. It didn’t matter to me whether people liked me or not, I
couldn’t have cared less. I didn’t go back to where I had been at before, I
decided to try my local college. I was the only blind student there.

With the second year of my A-levels, came family problems, which lead to me failing my fourth module of Psychology. I was lucky enough to be offered extra lessons.
I tried so hard, though I suspect it didn’t look
like it, but I just couldn’t get my brain to take things in. I left with an
E.

I had originally started, like was usual then at least, doing three A
levels. Law, psychology, and I don’t even know why, English lit. English lit
didn’t last. I absolutely hated it, plus, doing a lit course without any
books, is just a little bit pointless.

I am not impressed with my psychology mark, but at least I didn’t get an out
and out U, so looking at it that way, I suppose I don’t mind. My law grade was a C, one mark off a B, which was frustrating.

By this point, I still had absolutely no idea what I wanted to do with my
life. I could except my reasons for quitting lit, but what now? on two A
levels, one which I’d pretty much failed? I decided to do another two and
see where I was in another two years. Accountancy and politics.

Politics was a bad idea from the word go. I don’t know what possessed me.
That went out of the window, pretty much right away. Accountancy, I really
enjoyed, but no text book, no learning support of any kind. If I’d have had
the help I needed, it really wouldn’t have taken long, it would have been
fine, but it just didn’t happen, no matter how much I told learning support
that I was struggling because noone would sit down with me and show me
proper ledger formats. I could do them, but not in the way that was
accepted. It wouldn’t have taken long to show me at all, it just didn’t
happen.

It was like being in a recurring dream. I left. If I couldn’t get learning
support to get off their behinds and do their job, there was no point in me
staying. That may sound defeatist, but my resolve was made thinner and
thinner every time I asked for help, got told that I’d get it, and it’d just
never happen. It was always someone else’s fault, noone could decide who,
and in the meantime, my marks were slipping further and further for wrong
formatting. The most ridiculous thing was, my accountancy tutor was also my
personal tutor. He knew I wasn’t getting what I needed and he complained
about it as much as I did, but he still kept marking me down.

This time, leaving in the middle of something was significantly easier to
swallow. I knew it wasn’t my fault, and somewhere inside me, I think even
then, I knew that if I stayed, I’d just get ill again, though I didn’t think
of it consciously.

I had a few months to collect myself, and decided that it was time to think
of something else. I settled on counselling training. It sounds like a
cliche, but I knew it helped me, so I decided I wanted to try and give that
back to others.

By this time, it was March of 2005. For the past year, I had also been doing
sessional work for a community involvement project, working with children
between the ages of 5-13, promoting their voices and opinions of issues that affect
their lives in the local area.

I started my introductory counselling skills course in the April. It was
great! I loved it! At last, I’d found something that I really seriously
wanted to do. The first lesson however, ended with me having one of the most
severe headaches I had ever had in the back of my head. This was a totally
new thing. I was used to migraines and sinus pain, but this was completely
different. As I got home, I started feeling really dizzy and was reduced to
laying down for the rest of the evening and night, popping painkillers like
they were going out of fashion, and sleeping far too much for someone who
had only been out for the duration of an afternoon.

The course carried on every week, and I carried on enjoying it, but the
headaches kept coming. I ended up back at the doctor’s. She told me I had an
inner ear infection. Whether she knew that for a fact, or was just guessing,
I don’t know, but anyway. Antibiotics again… I still kept getting the
headaches after I’d finished them, and another visit confirmed that my ears
were fine. I just thought it was one of those things and started walking
around with painkillers in my bag all the time, just in case.

Passed the course no problem, and went on to do the next course up, which
lasted for a year. Still headache ridden, I just ignored it. I would point
out that these courses were at a different college, and the experience there
couldn’t be more different. I got what I needed, when I needed it, the
tutors went out of their way to make sure that I was doing ok, and people
treated me like a human being. I’d also started volunteering for a rape
crisis helpline. I thought I’d finally
sussed my life out.

February 2006, and I ended up in hospital with toxic shock. It was so weird. People would talk to me, and it just sounded like they were speaking a foreign language. I couldn’t remember things, it was like I was ET or something. When I got home finally, and went back to my not being able to stay awake thing, I comforted myself with the fact that I’d been told it might happen after having what, essentially, was the beginnings of blood poisoning. Interesting how this has never been put on my medical notes.
They said to give it a couple of months as it would
have been a huge shock to my body, bla bla bla…

I moved out of home in early March as well, which had it’s own stresses, so
I just assumed that, again, it was normal. I started falling behind at
college, but managed to pull it back and passed my course fine. Next stop?
Counselling studies, pretty much a theory based course. I hate theory!

From the first week back at college, by the time I got there for my lesson,
I had a headache. By the time it was time to go home, I thought flu was
coming. The first few times, by the next day, I was ok again, but as the
weeks went on, it started lasting longer and longer. In the end, it got to
the point where I’d get home at around nine thirty at night, [this was an
evening class once a week thing,] I’d fall asleep while my then boyfriend
made me dinner, wake up just about enough to eat, and go back to sleep for
the rest of that night, the next day, and next night, usually surfacing on
Saturday morning, feeling like I was getting over some kind of virus.
Eventually, Saturday morning became Saturday afternoon, etc, etc.

I continued like this until January, and then started to lose the will to
live a bit. I did some reading and spoke to various people and started
hearing things about M.E. All I’d ever heard about the illness, was worst
case scenario stuff. That wasn’t me, so surely it wasn’t possible that I had
that? But it all sounded so familiar.

One day, I just got to the point where I felt so horrible, and miserable, I
decided that I had to do something. I rang my local ME support group. I told the
lady that I didn’t know what was wrong with me, and although I didn’t
believe that I had M.E, would she mind if we had a chat. She was so lovely.
I told her bits of what I have written here – it was even hard to put my
thoughts in to words at that point. She told me that she was no expert, but
that this was the name of my nearest M.E. consultant, and that she thought I
should get referred to him for tests. I don’t really know how I felt at that
point. Secretly relieved maybe a bit. I think I just felt like I was trying
to give my inexplicable ability of being lazy a name, a reason for existing.
I knew feeling ill was not about laziness, but I thought I was normal. I
thought I was just complaining about nothing.

Never the less, I went to the doctor again. I told her what had been
happening over the last few months, and she said, “yes, well you have been
telling me you feel tired for years and there’s no reason for it as far as I
can see. So yeh, I’ll refer you.”
At last! She was listening! However, the next thing she said filled
me with dread.
“if you are feeling like this though, you are going to have to stop going to
college as obviously it exacerbating the symptoms you are having. You can’t
continue to do something that is making you feel this ill. You’ll need to
give up your volunteering too. Are you still doing the sessional work?”
I’d dropped that about six months before when I’d started feeling dodgy
after giving myself the recommended number of months to get over the toxic
shock experience. I figured that I’d found what I wanted to concentrate on,
so I didn’t need to be doing more than I needed too because it was just
making me feel worse than was necessary.

The next few months were spent filling in questionnaires, having a couple of x-rays and
having blood tests. It was in May, when I actually attended an appointment that I got a diagnosis of ME.

Bare in mind, the symptoms I list while describing these episodes throughout this time, are simply the worst of a bunch. There were a lot more of them that I haven’t gone in to as this is going to be long enough for anyone to read as it is. I’ll never forget that day. You can never describe what it is like, I believe, to be overjoyed at what you are being told, even though the bottom has just fallen out of your world. I was happy because I knew from that moment on, at some level, that I was ill and I had been justified in asking
all the questions and feeling how I did at all these points in life, but at
the same time, I didn’t have a clue what to do. From what I’d read, people
didn’t just get better.

The one thing I will say about my x boyfriend, he was at least supportive.
None of my family believed me when I went in search for a diagnosis. “don’t
be so silly.” “If you got out and got on with your life, you’d feel so much
better.” They couldn’t see that it was getting on with my life that was
actually doing the damage, and it was not living with me, that made them
ignorant of what my daily life had stooped too.

I was given a load of reading material to give out. I think my mum did read
it, but whether she is the only one, I don’t know.

After getting my ME diagnosis in 2007, I tried a few things. Reflexology, L-Carnitine, D-ribose and hydrocortisone. I had varying amounts of success, apart from with the hydrocortisone, but I felt too impatient about the whole thing. While somethings helped a bit, because they weren’t a magic cure, shamefully, I gave up on them. If only I’d known then what I am coming to know now.

In 2011, I was diagnosed with an underactive thyroid and put on thyroxine. The difference that one tablet a day made to me within two months was amazing. I felt like a different person. However, like the things I’d tried before, it almost became a bit of a much of a muchness situation. I felt like my body had been starved of something, and was really pleased to welcome it on board when I started replacing it, but after a while, it went back to it’s sluggish, slow, painful state, greatful for what it had, but grumbling that it wasn’t enough.

It wasn’t until the summer of 2013, that I started learning a bit more about thyroid disease and adrenal problems. I have had the help of someone who I consider to be a wonderful friend now, though at the beginning of this, I hardly knew her.

Throughout my journey, I have come to learn the difference between laboratory accepted norms, how they vary from lab to lab, NHS guidelines and how they don’t tally with said laboratory norms, and how many doctors seem to be unwilling to tell you when your blood test results are on the low or hight side of normal. There seems to be a monumental difference between a considered normal result to a medical test, and an understanding of what the optimal results for said test are so that the patient will feel as weel as possible. It doesn’t seem like any coincidence to me either that doctors are more than happy to proscribe drugs, yet are unwilling to tell you that you can help yourself a great deal by taking supplements. Indeed, I have heard stories of one such doctor who is so opposed to supplements, that he actually told his patient that they were all a load of junk, and that she is poisoning herself. Just the kind of understanding support you need from your friendly local medical practitioner.

Since the summer of 2013, I have increased my dosage of thyroxine from 50MCG daily, to 125MCG daily. As my kidney function is on the low end of normal, I have been taking 1200MG of alphalipoic acid a day. I am on vitamin B12 and C, magnesium and calcium as well as iron and folic acid. All of these showed up at the low end of normal, but were not abnormal enough for my doctor to be even slightly perturbed. Vitamin C is not, as far as I am aware, testable, but your body can easily get rid of what it doesn’t need, and taking it helps you to absorb many other things, so it was my choice to do that. Also, last November, I was diagnosed with a Vitamin D deficiency. I was put on a mega high dose for ten weeks, and then on a daily supplement dose. I still get a lot of pain in my torso, but my stiffness and niggling limb aches have all gone, which is a huge improvement. In terms of the other supplements, what have they done if anyting? They have made me feel able to sit down and write this. I used to love writing, but found it near on impossible to concentrate. Indeed, I’m still pretty bad at returning emails, but I am definitely getting better. My head is much clearer, and I can definitely feel a massive difference in my cognitive ability. It’s a very hard thing to try and explain to someone. You don’t really understand it until you see it happening to you. The other massive difference is that I hardly sleep in the day anymore, and that’s something I never thought I’d get out of!!!

Until I have more blood tests done in the next few weeks, I won’t know if anything has changed, but I don’t see how things can be the same. I do not believe in placebos, and that is that. The proof is in the pudding. I have seen half of it, and I eagerly await the next chapter of helping myself to become well again. I plan to have my adrenal glands tested when I have the money, but judging by the results of the adrenal stress quiz I took, I will be absolutely amazed if that comes back ok.

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