Somebody Check My Brain?

Pain Specialist “You go to a therapist every week – you actually have enough to talk about every time!?”

Me “Yes” and trying to avoid being too sarcastic or dropping f bombs “ between you and me – this illness has f… screwed me up”

Before I talk about the stuff that goes with pain and all that jazz, I wanted to touch on something that has really helped, which is therapy.  Four years ago I would have refused any talking therapies – a private person and highly introverted, I was absolutely convinced that I would get better and move on, if I needed to re-train my brain, I’d do it with books thankyouverymuch.  So having my opinions completely changed about it shows how much it has helped.

Then my pain specialist, after exhausting every option several times over, said that the only thing left was counselling at the local pain clinic – and as a Good Patient, I went along with it. I had a brief initial consultation where I said that my pain strategy which was to push myself until I crumbled, to which she said ‘that sounds OK’.  I was then told that I could do to group therapy (which makes sense as it is more cost effective for the NHS), but for me? even if I could handle the length of the afternoon session (which is unlikely) as an introvert, INTJ and not exactly a people person, the whole thing would have me climbing the walls.  I abandoned my ‘good patient’ manners and said that I would rather wait the 18 month waiting list for a one to one session.

Less than a year later I was struggling with another illness and full of steroids and their side effects.  The pain was spiralling out of control despite an increase in medication, I could feel I was slipping into a depression and needed help before it took fully hold.  My options were to see the doctor and go on anti-depressants (which I had already tried and made me very sick) or find a counsellor and see if that could help.  I spoke to three therapists.  One was into alternative therapies (“Have you tried reiki?”), the other was religious and the last one was just right.

From the first session she seemed to understand that it wasn’t just the pain I was struggling with, but all the crap that goes with it  and the whole ‘pushing myself until I crumble’ attitude was not helping at all.  There was something else.  Something that was the hidden key that unlocked all the why’s.  I’m Highly Sensitive.  Now, this is an unfortunate term that conjures up whiney images of ‘delicate flowers’, but as a term it does what it says on the tin and is a real condition.  My brain works in a different way.  I feel more – smells, textures, sound, light, medication are all heightened for me. I am more intuitive and empathetic towards everything (which can cause anxiety) and perfectionistic – in short, sometimes the world is too damn much.  On the plus side you are more creative and it is not a surprise that so many artistic people are often HSP’s.  The stress I put on my body – to be in a career that didn’t fit me, among people that I couldn’t gel with, in an atmosphere that drained me, all added to the final melt down of my immune system.  It was amazing that I lasted that long without falling apart.  But more about High Sensitive People later.

Now, two years on, I am still going to therapy.  It’s a long term thing and I understand that, layers of behaviour need to be torn down and new ones built.  It isn’t all fluffy chats, it’s hard and demands that you work, for it to work; but it helps.  And until a new magic pill is made that will make the pain go away, it is all that I have.

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This is me, an HSP with neuralgia. Yippee

When I first became sick I decided to set up a website.  At that point I thought that I’d get better, every doctor that I saw said that I was young and that I’d recover from the Post Herpetic Neuralgia (nerve damage as a result of shingles), but as the years went on I didn’t.  The website grew e-cobwebs and while I wrote a lot, I could not bear to read it back and face my reality in black and white.  I would simply turn the page or close the document and try and get through the next moment.

The years passed and I went from being certain that I’d get better with a positive outlook; to hopeful that I’d get better because the doctors still said so; to being so frantic that I *had* to get better with an almost obsessive passion.  My slow road of acceptance of having neuralgia as a permanent companion started after a weekend of tears when I started to entertain the idea that I might not get better – and I decided to see a counsellor.  So for the last two years I have been trying to come to terms with the fact that I might not get better. There is no new treatment in sight and to quote my former pain specialist that other than my existing treatment it is best ‘to leave well alone’.

Now I am finally learning that having nerve damage and the resulting chronic pain isn’t something to be ashamed of.  I used to struggle to be and act ‘normal’ which didn’t help me nor fool the genuine people around me.  I still feel betrayed and angry about the illness, but hiding it doesn’t help which is why I wanted to start writing about this.  Maybe it’ll help someone else.

In the course of the counselling, I have also learnt that I am an HSP – a Highly Sensitive Person.  It is pretty much what it says on the tin.  I am sensitive to lots of things, medication, smells, certain foods, bright sunlight and have a sensitive immune system, which is probably why I ended up being sick.   It also goes hand in hand with my introversion.  Something that is continually talked about is being ‘overstimulated’ that the world is often too loud, too bright, too noisy and intense to concentrate.  As an HSP, I am more sensitive to pain, so an already chronically painful condition feels intolerable and the regular medication often comes with horrible side effects, leading to a delicate balance between the pain and medication.  There are benefits of being an HSP, greater concentration, creativity, intuition, being able to notice the small things and the emotions of other people  Essentially, what it boils down to is that some people were the hunter gatherers and went off after woolly mammoths, others stayed at home, worked on the small details of the society and became the shamans and leaders.

So in an attempt to fully accept who I have become and what I am now as a ‘sick’ person, but also as an HSP, I am waking up the blog, dusting off the cobwebs and chasing away the spiders.

Hello, I’m Nicola and I am an HSP who suffers from chronic pain.

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