Tag Archives: PHN

Check yourself, before you wreck yourself.

Most people are familiar with this term for ‘you’re being an idiot, watch what you’re doing’, but recently for me it has a more literal meaning of ‘watch out, or you’ll end up on your back’.

I am continually learning how to handle my pain levels and I imagine that I always will.  The last couple of months I’ve been trying to get back to ‘normal’ after a series of unavoidable medical appointments that left me ‘wrecked’.  I had no option, but to go to them; and no option afterwards, but to just stop and wait for it to pass – no matter how frustrating it was!

When the pain was at a level where I could handle it, I was back at therapy and it was pointed out that I spend a lot of my time trying to ignore my pain.  Like that drunken relative at the wedding who decided to come in too tight shorts and is getting a bit handsy with the bridesmaids; ignoring the pain doesn’t work.  Simply trying to takes super human strength and leaves you in a worse state than before.

What would happen if I didn’t ignore it?  The plan was to set a timer for 10 minutes and when the alarm went off I’d do a pain check.  Not only for primary pain, but the secondary aches and pains that indicate I have been standing in a certain way as to protect my back, or if there is a change in my breathing.  Much to my surprise, not only did it help, but it made a huge difference to the way I approached things.

I am now paying attention to those small, almost insignificant changes that I have been ignoring all this time.  When I notice secondary pains, I am able to try and nip them in the bud with some stretches, or try some breathing exercises; or simply just stop, so it doesn’t get worse. It also made me realise just how much time things take.  Quick jobs weren’t so quick and actually took almost twice as long.  No wonder I had problems!

Of course, I have slipped up since then and not set the timer only to find myself going too far and paying for it.  So I’d say, why not try it out?  It’s not going to do any harm.  Use your phone or iPod and set a timer using a pleasant alarm – no honking horns, which adds to your stress levels!

We are currently in a heatwave in the UK, so my pain levels have skyrocketed.  The timing method has shown that things that took 10 minutes a few months ago, now take 20 at least.  It’s not surprising, but it is a reminder that I have to give myself a little leeway with life – especially when it is the most unpleasant weather for me. 


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The shame of having a chronic illness

I have been thinking about shame recently after watching the Brene Brown TED talks.  It was so insightful that it made me reassess everything and I have been doing my best to put some of her ideas into practice.  While talking with some other bloggers I realised that everyone with a chronic illness feels an element of shame.  You might not feel it all the time, but it is there, subtly colouring our perceptions of who we are.

by molly hahn @mollycules

See, I am a bit of a control freak.  As an adult, my perfectionism was a protective shell around me and since I have been sick I’ll be the first to admit that my perfectionism has got worse.  I am far more strict with myself than ever before and an element of that is not showing how bad the pain is.  I don’t want people to see that part of me for fear that they will reject me because of it.  I crave the luxury and dignity of looking normal, in spite of the pain – but that is a symptom.  When did I start feeling such shame for my situation?

Unravelling my memories, I found one of the roots of the problem.  It was 4 months into my illness and my employers had made it abundantly clear that I was “letting down the team” so even though I struggled to sit and was drugged up to my eyeballs, I agreed to come in to see how I coped.  By mid-morning it was just too much.  The pain of sitting and using a computer was so overwhelming that I could barely focus, let alone work.  Hoping that moving would help, I went into the break room and quickly realised that it wouldn’t.  I was literally stuck, every move was aggravating the pain.  It felt like it was engulfing me and I didn’t know what to do.  Frustrated, scared, in extraordinary pain and on the verge of panic; I cried.  This was the first and only time I had lost control at work.  Thankfully one of the Head Honchos saw me and said that I should go home.  Using every ounce of strength, I went back into the open plan office to collect my things, all the while attempting and failing, to pull myself together.  Everyone was staring at me.  A few of the employees had had shingles and all had made swift recoveries, so I don’t think that anyone truly appreciated how bad it was.  As I left, still being stared at, I felt an overwhelming sense of humiliation and failure.  My protective layer of control had gone and I had shown the reality of my illness; instead of compassion and kindness, they made me feel humiliated and ashamed, with the accusation of why wasn’t I better and how I was letting everyone down. 

10 years later and I am a different person with a far greater understanding of my illness and why it happened.  However, I understand how that incident had engrained those feelings of shame into me.  It fed the fear of what other people’s reaction would be towards me if I showed them how bad the pain was.  Yet, it’s not the pain of them turning their back on me or loss of a friendship that I feared, but the action itself; the feeling that they believe that I am less of a person because of what I have become.  Of course this is crap, I know that!  I have made new friends and they haven’t turned away from me, yet that early experience still haunts me.  This is a work in progress, as it won’t magically eradicate all feelings of shame, but I am throwing ink over that particular ghost and can start to heal and find peace.

If you haven’t seen them already, please visit Brene Brown’s TED talks


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Living the life you have, not the one that you had hoped for

It is my 10 year anniversary of getting sick and at the moment I feel like I am the physical embodiment of the term ‘my nerves are hanging out’.  The simple fact that ten years has passed since I got sick is frightening.  I tend to live in the moment dealing with one hour at a time because if I think about the reality of it, it scares me.  At the moment, I am feeling more of everything, the pain, my emotions, the world, even the air around me hurts my nerve damaged face, stinging like a slap.

Through all the pain and fear, I know that this illness had to happen, I was like a rubber band that was stretched well beyond its limit so it was inevitable that I’d break.  If it wasn’t shingles, it would have probably been something far worse.  Like a forest fire, it completely wiped the slate clean; friends, plans, job – all gone.  Yet in doing so it allowed me to rebuild even if I had to battle with pain and side effects of the drugs to do it.  I had the luxury of being able to figure out who the hell I *really* was, without my old life competing.  Not only had a turned over a new leaf, my new leaf was a completely different species!  I have met great people who are in a similar situation as me, I am slowly accepting my body and I even have an awesome cat who is saving me on a daily basis.  See, it’s not all bad!

That doesn’t mean that I don’t look at my contemporaries and feel a stab of sadness or even anger.  I see them with their job, house, partner, family and children – everything that I am deprived of and it hurts.  Yet I know that there is nothing wrong with feeling like that, I wouldn’t be human if it didn’t affect me!  Once again, my small victories seem insignificant and the weight of it all threatens to crush me.  This is part of the reason why I do my best to remain quiet and calm to avoid the pain – both emotional and physical.

I am slowing making my peace with it all, an uneasy truce.  I mourn for the life that I had and the life that I had planned for as that young 27 year old before the it came tumbling round my ears, but what it boils down to is that you need to live the life you have, and not the one that you had hoped for.



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What the hell happened to me?

There are times at night, when it is all very quiet and I can’t sleep that I allow myself to hear the thought deep inside that goes ‘please make me better, make me wake up without pain and give me my life back’.

I went from being a normal 27 year old, doing her best to change careers and at the tail end of three months of ill health; to someone I barely recognised.  I thought that I was getting better, but it was the calm before the storm.  As I was making plans for the future, inside my body the shingles virus had reawakened and was charging through my nerves causing irreparable damage.  I didn’t know it, but things had changed forever.

Within 6 months, I had lost my job, friends, social life and career opportunities.  In turn, I got pain – every damn minute – and the balancing act of juggling medication and side effects.  I was repeatedly told that I’d get better, that ‘normal’ ‘young’ people recover from shingles and PHN and that they don’t have it long term…but I didn’t recover.  I let my hair grow, thinking that when I’d get better I’d have it cut into a bob like before – I’d imagine myself emerging like a butterfly from the chrysalis of illness.  Twice my hair grew to beyond my elbows; yet still the recovery didn’t happen.

Every year around the anniversary that I got sick, I hoped for a miracle. which was kept alive by the doctors until last year when I read a letter from my pain specialist to my GP.  In black and white it said that there were no other treatments to try, that the pain relief is as good as it will get and I wasn’t going to get better.  No butterfly was going to emerge, instead I was to be forever encased in pain. Knowing the truth was actually a relief, I could move on instead of trying to cling hold of my old life.

In How to be Sick by Toni Bernhard, she talks about this and has an amazing attitude.  She says that everyone will probably fall sick before they die, it’s just that some people get sick sooner before they die.  I admire and envy this accepting philosophy, as there is still a part of me that wants to scream and kick shins – to fight all of this with every ounce of energy I have.  Why do I have to endure this pain for another 30 or 40 years and lose out on so much?  I have heard people talk about the benefits of an illness, but I can’t find enough benefits that eclipse the pain.  I look at the life of my contemporaries and feel envious of the choices that they have, a pang that weighs heavily on me.  Choices, I miss those.

The thing is, even with all the emotional ‘sorting’ I have done, it is not only in those quiet moments in the dark that those thoughts emerge.  They also bubble up when the pain is so bad that breathing hurts and I feel that my torso is being crushed.  When I hold my breath for as long as I can and pray to every God known and every one that isn’t and beg that it goes away.  Just a moment of peace, to calm the perpetual storm that surrounds me.  Instead, I eventually pull the frayed strands of my pain management together and somehow there’s enough of … whatever it is – gumption… to carry on.

Whatever I do, there seems to be a part of me that is still confused and shell shocked, wondering what the fuck has happened.  How long  do I have to wait until I truly accept what has happened to me?  I don’t know, maybe until I say goodbye to the my old life and everything that I had wished for once and for all or maybe it stays a part of me as an anchor to the past, but that is for another day.


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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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