Hula baby!

An osteopath that I saw in 2013 suggested that, when I get shoulder / neck / back aches and pains, I should try hula-hooping.

That look on your face right now – that’s what I did, too. “Is this guy kidding?”

But two years later, my crazy-coloured £2 hula hoop still gets pulled out when I have the odd ache, and it works faster than taking a painkiller.

When I started hooping, I couldn’t manage more than a few seconds at a time before it hit the floor. Now I can go several minutes in spin-mode. And I admit that, when at work and feeling a bit achy, I do the hula hooping motion (in private!) to help me get through the day.

It also has the added bonus – when doing it regularly – of very quickly tightening up your belly muscles. The repetitive hip gyrations help strengthen your core muscles. And you can’t help but feel good and positive when doing it.

Has anyone else benefited from hula-hooping? Or something equally wacky?!

It's obligatory that you look this happy when hooping.

It’s obligatory that you look this happy when hooping.

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What I learned about living with pain from… Frozen

Let it go, let it go….!

Note to self:

Let go of other peoples opinions.  Let go of trying to convince people who don’t want to be convinced that you’re ill. They’re not going to help, it’s a waste of energy.  Move on to discussing it with those who will.

Let go of the people who have no patience for your headache.  Time is short – spend your now-all-too-valuable energy on cherishing those who do.

Let go of worrying about the time stolen by your pain. It’s done, it’s gone. Move on to thinking about the future, and appreciating the (sometimes restricted, but always precious) bits of time you do have to enjoy life.

Let go of the wishes that won’t come true, and that constantly disappoint (for me, that I’ll wake up one day without a headache) and put your effort in to what is practical, what can be done, and move forward.

Have you Let Go of anything?

The cold never bothered me anyway!

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What colour is your headache?

I came across this – possibly black magic – video recently.

How does this work? Well, I don’t really know, but this is the way I see it.

Pain is like a car alarm.

Your body is alerting you to the fact that there is something wrong.

Just like a car alarm alerting you to the fact that someone may be breaking in to your car – that you need to take a look and take some action to resolve the situation.

Your body is telling you that there is something wrong that you need to take a look at and resolve.

So maybe once you address the alarm, your body doesn’t need to warn you any longer…?

What do you think?

The new normal?

I spend a lot of time reading about pain.  I’ve read some great blogs written by people suffering with different types and levels of pain.  The courage, stamina and grace of these people constantly amazes me.  Before I experienced chronic pain, I had no idea that there was this ‘hidden’ community of people all around the world living with and coping with pain.

A theme that I keep coming across is the acceptance of pain.  It seems a popular opinion that when you accept pain as a constant in your life, you can stop ‘fighting’ it and learn to manage it, allowing you to focus on other things.

Those of you living with chronic pain will no doubt have heard this before from your doctors, from your friends, from your own research… has acceptance helped you?

I struggle with the thought that this might be something I need to learn to live with.  My instinct is to fight.  Acceptance seems like giving in.. It means giving up thoughts of continuing to grow my business, of going travelling, of living a life that involves going places to resigning myself to a life of staying at home in bed with the odd break when pain allows me one…

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Task: Do nothing

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I am a big believer in the power of positive thinking, but in a moment of complete despair after writing my last post three weeks ago – despair that this pain will never end, despair that I can’t seem to find anyone who really cares enough to want to help, despair that my life has changed in so many ways that I didn’t ask for – I decided to ‘take a break’ from thinking about it all, to try and live my life without looking for answers, without hoping, without trying… just to see if “it” might ‘go away’ on its own.  Having tried everything else, it seemed, I thought I would try ‘doing nothing’.

Big surprise – nothing changed.  Each day went on the same as the one before it, blurred into one.  I slept, I ate, I worked a little.. I slept, I walked, I stretched..

A few days ago, I decided that ‘doing nothing’ needed a little something, and I contacted a local acupuncturist. I have had two sessions so far – more on that later.  I’m definitely feeling a little more positive, though – proof that ‘doing something’ is better for me than ‘doing nothing’.

You’d be amazed at the amount of people who have suggested to me that maybe I’m trying too hard and I just need to relax and let it all ‘takes it’s course’…. well, I’ve tried that now and… nope.

Why is there no continuity of care?

I have just left my fifth – and apparently, final – physio appointment.  After some neck manipulation, I was told that “nothing seems to be working” and that I was not able to make a further appointment.  I was shocked – I assumed that we would keep going.. keep trying.. until things started to get better..

I’ve had a total of 5 sessions over 7 weeks – the first one of an hour and then the rest of 20 minutes each.  Each session was different – discussing posture and lifestyle, teaching me some exercises, neck massage, neck and shoulder massage, manipulation… nothing was tried twice.  I did not expect that something would be tried once and then given up on.  I certainly didn’t expect to have one short massage – does it ever take one massage to fix an 8-month long problem? I assumed it would be a course of treatment..

I feel like a failure. Maybe if I had been more positive about the results, said the right things… but then, I only gave totally honest reports of how I’d been during the week / how my neck seem to have responded to treatment, with the idea that honesty was what was needed to progress….

I’m angry. I can’t believe another medical professional has given up on me (yeah, yeah, I know that medics can only do what they can do, I’m not expecting a miracle worker) but more than that, I’m angry that he seemed more than happy to let me leave the room having no suggestion of where I should go next.  I had to stay seated, stand my ground and continue the conversation despite all signals that the appointment was “over”.

“So where do you think I should go next? What would you do, given your experience?”

“I’d probably see a chiropractor or an osteopath.”

“Are those things available on the NHS at all?”

“No.”

“So, unfortunately, those options aren’t available to me.”

(…)

“What about acupuncture? Do you think that might be useful?”

“Maybe.”

(…)

“Is that available on the NHS?”

“I’m not sure if you’d find one locally.”

(…)

“So how do I find out?  Do I need to go back and see my GP?  Could you refer me?”

“I’ll write a letter to your GP.”

(…)

“So.. what do I do?  Do I need to make an appointment to see her?”

“Yeah, give it a week or two and then make an appointment.”

“A week or two”? Why?? Why not now? Why not somebody try and help me now??

My physiotherapist seems like a nice person.  He even apologised, as I was leaving the room, for not being able to help.  I didn’t need an apology from him.  I needed his expertise and advice, for him to see my treatment through – if not with him, then with whoever he advised me to see next.

I can’t understand why, out of all of the NHS professionals I’ve seen, not one has wanted to see my case through or ensure that I’m going ahead on the right path.  They have all seemed perfectly happy to see me leave their care unhelped and unadvised.

I’m tired.  I don’t feel like I can keep fighting for help all the time.

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Unmasking the enemy

It’s nearly nine months since The Headache began, and there is still no diagnosis.

For me, one of the hardest things about dealing with this situation has been not knowing my enemy.  Not only did I know nothing of anatomy, but I found it very difficult to recognise exactly where the pain was coming from.  When you are overwhelmed with headache and nausea and referred pain, it’s almost impossible to see through all of that to identify what’s actually causing it all.

For most of these 9 months, I had a long list of symptoms and neck pain was some way down the list.  After seeing a massage therapist, who was able to eliminate and reduce various spots of referred pain, I was able to come to my own conclusion that the source of the pain was the remaining grinding sensation in my neck and request that this be investigated further.

I still don’t know exactly what is going wrong in there.  I am waiting for the results of a second MRI scan on my neck.  I am hoping against hope that it shows nothing, and that we can then get down to working on the basis that it is caused by some kind of tension in the neck muscles.

Throughout this process, I’ve read about many possible diagnoses that I have then tried to eliminate.  Some of them have – frankly – scared me, and I still fear the diagnosis that might mean that this is serious and / or permanent.

But I feel a strong need for some diagnosis, for someone to tell me exactly what’s going wrong, to unmask the enemy, to give it a name.  I wonder if my doctors need this, too – if “it” had a name, one that they recognised, that there is a precedent for, maybe I could finally get some help?

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