# My DP/DR Journey



## busy_bee (Aug 3, 2015)

***This was meant to be a short summary of my journey with DP then it turned into a story, scroll to last 7 paragraphs if you just want a little information about my eventual cause and road to recovery***

It's true what someone on this forum said the other day. People who recover don't tend to post about it. Probably because they're no longer thinking about it, they don't want to remind themselves of it, or because there isn't really a day when they suddenly recover and think 'Eureka! It's over!'

Something I read the other day online prompted me to hack back into this old account and post my journey to give others, who may be in the exact terrifying position I was in five years ago, some light at the end of the tunnel and perhaps some answers. It said "Now that I have recovered I will not turn my back on those who are still in pain".

In March 2010, 30 days before my 21st birthday, I was driving out of Tesco with my ex-boyfriend when I noticed something strange. When I tried to gaze at the number plate of the car in front of me, I could only see half of it at a time. I began to panic and in doing this, the only sensible thing to do seemed to be to keep driving. To pretend everything was 'normal.' As I began driving onto the road, I realised this strange sensation was taking over my whole vision. My ex-boyfriend began shouting, 'Bike! Jesus, you nearly hit him!' I exclaimed, 'I've gone blind, I've gone blind! What is wrong with me?'. Being the insensitive twerp he was, he replied, 'well if you've gone blind let me out, I don't want to be in the car with you!' Luckily I knew the roads, so with just the top corner of vision I had left, I quickly negotiated the way home, stumbled into the bedroom and sat down wondering what to do next while hoping my vision would magically come back- well, 20 minutes later, it did.

Three days later it happened again. This time though, I was shot into a whole new world: The World Behind The Mirror. As my vision began to return, I floated far, far away from reality. However, the panic stopped me from focusing on it.

Three days later, it happened again. I called my dad who took me to the hospital where the doctor diagnosed migraines. I was confused because I thought migraines were 'really bad headaches' and I had not had a really bad headache in my life. I was told the 'floaty' symptoms were the aftermath of the migraine and would go away within three to five days. I went home to sleep it off.

The migraines continued- every three days. The feeling of dissociation engulfed me. I remember my ex-boyfriend took me to the river for a picnic to cheer me up, and I was looking at the trees thinking how they looked so flat. So non-existent. So 'not there'. I looked at him, reached out and touched his face and said 'I wish you were here'. He laughed and replied, 'I am, silly'.

The days passed by. I was well over my '3 days to recovery' and yet the 'aftermath' was still present. I looked at myself in the mirror but I couldn't see myself. I was so far away. Unreachable. Untouchable. I lost my appetite entirely. My boyfriend stopped wanting to share a bed because I would shiver and shake all night. I lost two stone in as many weeks. I went back to the doctors.

"Migraines are symptomless between attacks" the doctor said to me. I tried to describe how lonely and terrifying this 'far away' feeling was. I told him I felt like a ghost. He referred me to psych for cognitive behavioural therapy.

I went home and remember feeling a strange mixture of relief and confusion. I was pleased that I was mad, because it meant that I was not ill. But what does madness involve? Is there a cure? Well, I held out hope for the CBT. 'Perhaps they will cure me of my madness', I thought.

A few weeks went by and I waited with excited anticipation for my appointment with the psychologist. Finally, I had an appointment with someone who understands madness. But a few minutes into my appointment I realised even she had no clue what I was talking about. "I feel far away" I said.

"Do you feel like you struggle to associate and communicate with people?" she replied while looking over her glasses with a mildly patronising, well-rehearsed sad-face.

"It's more of a physical phenomenon" I replied.

She eventually concluded that I was not 'mad enough' and discharged me. I walked away feeling abandoned once more.

That was the day I gave up looking for answers. The doctor who diagnosed migraine had put me on Pizotifen, an serotonin antagonist designed to stop migraines and it worked. The weight began to slowly increase, the pain above the eyes subsided and my physical strength began to return. But I was stuck with the prevailing DP. I had to just accept it.

I turned to this forum for relief. The DP/DR was unrelenting and being trapped inside your own body, day in, day out is frankly terrifying. I was tormented by my sense of self. Or lack of.

I don't remember the day when I stopped posting, reading, searching. I don't really remember much of the last five years because when you live in this 'half-alive' state you lose something. Because I wasn't at my 21st birthday, though I remember bits of it vaguely, I accidentally told '21' as my age until I turned 25.

I grew to become used to the DP/DR. I learned to get on with life and largely ignore it. I found if I was particularly busy with work I could forget it was there, and push through the slightly drunk, quivery feeling.

In 2013, I visited a family-planning doctor because despite the medication, I occasionally got migraines at my time of the month. Which by this point had diminished to time of the year, though I had ignored it as I had used all my 'doctors visit cards' up and didn't wish to waste any more until I was certain I was dying. The doctor I saw here changed my life.

"Last period?"

"8 months ago, I think"

"How old are you?"

"24"

"That is not normal for a 24 year old, have you had any other symptoms?"

Perhaps a dodgy question to ask when you've only got a ten-minute slot and an OAP in front of you but nevertheless she asked it, and I told her. She listened. Then ordered blood tests. By the way, OAP stands for Over Anxious Patient, I believe that 'OAP' notes are attached to patents records within the NHS when they use up too many 'doctors visit cards' before anything is found to be wrong with them.

A week later, a letter dropped through the door. It was my thyroid function.

I started taking synthetic thyroxine in 2013. When I look back, I can't really compare how I feel now to how I felt two years ago. It was a gradual change. I look at the palms of my hands and decide, "I guess they look pretty real now".

I still notice my spaciness sometimes, especially in the woods or walking over bridges. When I stand on a high building and look down I think "I have no idea where the floor is". But I don't freak any more. I am not driven to almost jumping over the edge because of it.

I live an almost normal life. I know I'll never be 100% because when you have thyroid disease you often aren't. But I managed to carry on at work. I got a promotion. I moved onto a new role. In 2012, even before my diagnosis I felt strong enough to go to uni and so in 2013 I began my studies and to this day I have excelled. Next year, I graduate.

The cherry on the cake is the fact that I finally found answers. For many, DP/DR is associated with chronic anxiety, due to adrenal fatigue and with thyroid disease the symptoms are therefore similar. The thyroid gland controls every single hormone in the body and to me, this suggests that DP/DR is a signal that one or more of your hormones are not as they ought to be.

Apart from one, no doctor in the UK had any time to even listen to my symptoms, because in this country, DP/DR simply does not exist. Doctors could make a judgement solely on the migraines, which, despite being a symptom of thyroid disease, they had blamed on stress. Looking back, I realise that the stress I was experiencing in my relationship probably triggered the auto-immune thyroid disease.

For reasons above, I can't call this post 'recovery'. But I'm not so sure I like 'recovery' stories. They are so far out of one's reach that they often don't give real hope.

I hope my story shows that you can get through this. You can get on with your life if you just hang in there for the ride and don't let it define you. Don't give up searching for answers. And don't ever, ever, let anyone convince you that you're mad.


----------



## Ernestia Ignis (Apr 13, 2018)

I like this post.

congrats on finding the answer!


----------

