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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Can there be a more positive “sensitive” term for HSP’s?

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Once I was ‘diagnosed’ as an HSP, it provided me with answers for physical problems that the medical community shrugged at and went “you’re just unlucky”.  Even doctors used the term ‘sensitive’ to describe my iffy immune system and intolerance to medication, totally unaware of the concept of an HSP.  I never doubted that this was who I was, but when I started talking about it to friends and family I came up against a huge stumbling block.  ”Sensitive.” While the word ‘sensitive’ is great as a technical description, there is a lot of stigma attached to it.

‘Sensitive’ is often associated with discomfort and pain – sensitive teeth, sensitive stomach and sensitive skin.  Looking at definitions online, ‘sensitive’ conjures up images of someone taking offence easily, being too serious, overly emotional, readily affected, neurotic, highly strung, difficult, over dramatic; in essence, someone weak and irritating.  Do a search on Google images and the prevailing image is someone looking pained or wan, with their arms shielding their head.

Even those closest to me would often say ‘but you aren’t really sensitive’, clearly with a definite picture mind.  It seems that sensitive people aren’t allowed to be sarcastic or snarky or like loud music! I also have quite a few friends who are HSP’s but it’s the label that puts them off from exploring it.  If I hadn’t had such concrete, medical proof of being an HSP, I’d be like that too.

The term ‘sensitive’ doesn’t empower the people who need it most, the people like me who don’t naturally fit into the expected role of a ‘sensitive’ person.   In fact, I am the product of a world where sensitivity was seen as weakness or failure; where pre-HSP, I had to cultivate a shell to protect myself from a world that was too harsh for me to cope with, even though I didn’t know why.

Some people seem to find peace with their sensitivity and are able to grow and evolve regardless of the negative connotations, but I am not really that kind of person … and there are others out there like me too.  How can I live life openly as an HSP when the term ‘sensitive’ is so restrictive?

In the past, HSP’s were the shamans; the people who created the plans of action, whose instincts and insight protected the community.  Our sensitivity was regarded not only as beneficial for society, but essential for its existence.  Now, the world is harsh and aggressive; it’s a vicious cycle where people are becoming more desensitized to it, continually requiring more stimulation which doesn’t bode well for HSPs!

However, whether you are an ‘open’ sensitive who is comfortable with who you are or like me, sensitivity doesn’t mean weakness.   HSP’s have an inner strength and continue to be intuitive and compassionate regardless of the harshness of the world.

So, do we reclaim the word ‘sensitive’ forcing the world to see us in a new light?  Or do we find a better term, if so… what is it?

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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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Goodbye to 2012 and 200mg of Morontin

200-meesy-mg2013 is certainly a new beginning , but I feel that I have to (firmly) close the door on 2012 before I start blogging in earnest.  Just before Christmas I realised that I had given up and what was more frightening, it happened so gradually that I was totally unaware.

Earlier in the year, it was confirmed that the shingles virus had been leaking out of me causing more nerve damage than anyone had imagined.  What’s more, not only do I have little control over it, but the doctors don’t know how they can help.  The Big Bad of my nightmares was real and knowing that there wasn’t much I could do, I fell into my old behaviour pattern of believing that if I followed the rules, took the pills and was a good patient, that I might be given a break.  Of course, that rarely happens.

I did my best to accept the new diagnosis head on.  As I was struggling with the new nerve damage in my face, I increased the gabapentin hoping that if I accepted it and the side effects, it would be easier.  What I didn’t understand was how the side effects would change me.  The weight gain and pins and needles in my extremities I could deal with, but the low mood and brain fog was harder – the tablets aren’t nicknamed Morontin for nothing!  I had read books, but I couldn’t tell you the titles, let alone the plots.  I also didn’t realise the impact on my family.  My thoughts were a jumbled mess; it was so hard to get a train of thought or my opinion across clearly and this frustrated them – and the more frustrated they got, the more upset and angry I got because I couldn’t get them to understand me. They tuned me out and I shut down and hid.  It was frightening that I couldn’t make myself understood, I felt stupid and confused – I was angry with myself and everyone else.  What was wrong with me?  I was doing all the things I should do, I was accepting my illness and taking the pills like a good girl, so why did it feel like I was being punished?

For months I had a permanent headache and heart burn; I was trying to explain why I was feeling so awful, but nobody heard me. I was losing control of the pain and the medication didn’t seem to be working, and there are no alternatives to try.  I felt such a burden to those I loved.  I could see no future, just more pain and I started to think about how nice it would be for it all to end.

It all came to a head in December, despite me telling them, my family didn’t realise that I had increased the tablets and I didn’t realise that I was resembling a zombie.  Once we had talked, I knew that the only option I had was to reduce the gabapentin back to my old levels and see what happens.

That was a month ago and I am down 200mg.  It has been incredibly hard.  Even though it was a small difference, the increase in pain hit me hard and I am still getting used to it. I do feel more alert.  I can remember the books I have read and more importantly, my family have seen a positive difference.  I can’t say that the future feels better or that I am not scared of what my body will do next – because I am, but I feel like I have bit of ‘me’ back.  The price is more pain.  It is a constant balancing act, how much pain can I live with vs the impact of the side effects.  All in all, I am glad to see the back of 2012.

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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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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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