Tag Archives: Chronic Pain

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 other options are there?

There are the times when nothing works and all the fairy tales I tell myself to continue through the day fall away and the stark truth is there sitting in front of me.  Nothing but pain.  It is so great and so overwhelming that nothing else can touch it, yet I can pick the cacophony of pain apart.  Each different type of pain, the stabbing, the bruising, the deep ache, the prickly, the weird feeling of needle sharp burning footed ants crawling over you, the numbness, tingling, ripping, stinging – a collection of pain that the most accomplished torturer would be proud of in their repertoire .  I’ve tried to work with it, to fight against it, to work around it, but in the grand scale of pain vs Nicola; pain has the upper hand, like it always has done.

The painkillers don’t really work and now my greatest fear is happening, that the side effects are eclipsing the relief.  I can’t see myself resorting to alcohol or cutting myself as a release valve, that would be too easy and too temporary.  There is no release.

And family?  The thing that I have held up as the reason to carry on for all these years?   I feel like that I am continually holding back the reality of the pain so it doesn’t taint them, that if there is only one thing I can do to help them, then this is it.  Yet it is already seeping into them and I can’t stop it.   For nearly 10 years, I have just been ‘carrying on’ for them, keeping up the appearance that everything is ‘a OK’,  that I am soldiering along.  But I am not and when is it enough?  I feel that I am the greatest drain upon them.  No matter how polite, how I try and only say nice things, be pleasant, say ‘yes’ to everything – it is never good enough.  I push myself into the mould of perfect daughter and it never works.  They have said that they know that I am in pain and “it doesn’t do anyone any good going on about it.”  Of course not, who wants to hear about it all the time, I don’t.   

When can I just admit, ‘this is too much’.  Please. Make. It. Stop.

I have this inner fury that I don’ t want anyone to know about, that I constantly push down.  I want to scream and show just how broken I feel.  I want to shout about how unfair it all is and not keep it all stuffed in like a good girl, like a good patient, like a good daughter.   I am sick of shaming myself into carrying on by telling myself how worse off other people have it,  living in a world where I force myself to be content with my lot by saying ‘it could be so much worse, so just be grateful that your life is this living hell and not another.’

I have no purpose in this world, unless my purpose is the unending struggle with the pain.  Is this some kind of entertainment for someone up in the clouds?  A battle where the outcome is always known, but the process is oh so much fun to watch?  There is no peace for me, no respite. Instead the only change I have is the minutes and hours when I find a vague reflection of who I used to be, yet I can never be again.  A special kind of torture.

This isn’t depression.  I’ve just had enough.  This is not who I am supposed to be, trying to fulfil small tasks that invariably fail, aren’t good enough or are just wrong, while my contemporaries are having a life, continuing into the realms of marriage, children, house ownership and careers.  I never wanted to be this person, yet I am* forced* to be her.  I have no choice in the matter, and it’s so unfair that it burns away in my soul.

I can’t see a future where I am magically able to cope and there is no medication being developed to help on the horizon.  I have it in writing by the man in a white coat that “it is better to be left well alone”.  The prognosis, my future, is pain and I have to just hope that it won’t get worse, because the likelihood is that it will.

I can see the burden that I am to those I love and I am repeatedly aware of all the things that I am not.  I feel the frustration of all the things that I could do with ease, that are now a struggle.  My childlike list of all the things I am grateful for or make me happy is actually a daily process of clutching at straws and one that is always falling short.

What will I do?

Carry on and hide it all from the word because what other option is there?


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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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