Recognising other bloggers who have cast helpful light and perspective on my own challenges

It has been quite some months since I last wrote a blog. The back end of last year was a hard road of trying to get the pain medications to the balance that made the basics of getting through the day possible, and working out how to shrink life to the things that I could get through. Then facing up to the surgeon’s persuasion that a tenth surgical procedure was the best way forward.

Through this time I struggled to find a way to share my experience in a way that I felt could help others.

Plus, I have to say that I found various bloggers and communities who are sharing their experiences and I felt were sharing a lot of the things that I had been searching for over the last two years.

So I wanted to blog to share links to some of them – in the hope that this is helpful for people reading it.

Joletta Belton – My Cuppa Jo (www.mycuppajo.com)

Jo shares her experience of over a decade of pain stopping her ability to work as a firefighter and to run and pursue the sport and life that she loved. She has gone on to do a huge amount of study about posture, musculoskeletal issues and pain, now sharing this with others in her beautiful and inspiring blog posts and also as a patient advocate at international conferences.

Tina – Living Well Pain (www.livingwellpain.net)

Just as Jo has pioneered the path in Canada, Tina has done the same in the UK. Tina’s accident was over two decades ago and she shares her experience of how to live well with persistent neuropathic and musculoskeletal pain with lots of practical tools and advice from her own experience. These come in the form of blog posts on specific topics and most recently as a patient advocate, she has written a guide for patients called ‘Making the most of Physiotherapy’.

Pete Moore – the Pain Toolkit (www.paintoolkit.org)

Pete attended a pain management programme in 1996 and since then has dedicated himself to sharing the best information and knowledge with both patients and clinicians across the globe dealing with persistent pain, especially back pain. He has a great website and has written a number of excellent guides on pain. Most recently he has set up a monthly Pain Toolkit Online Café on Zoom, where anyone is welcome to digitally ‘pop-in’ and chat or listen to others working with similar issues to their own.

Barbara Babcock – Return to Wellness (www.returntowellness.co.uk)

Barbara’s experience of her own neurological illness and also caring for her husband meant that she saw up-close-and-personally the life-changing impact that a serious health issue can have. This led her to use her coaching experience to restore emotional wellbeing and look positively towards the future. Her blogs and self-help tools help across: managing the health issue, reclaiming emotional health, reclaiming relationships, returning to work, reclaiming meaning & purpose in life, reclaiming hobbies & interests and support for carers and supporters.

Jo Moss – A Journey through the Fog (www.ajourneythroughthefog.co.uk)

Jo is bed-bound as a consequence of the health issues that she suffers from. She writes her blog to give other people in the same position a bit of hope. She says “My life isn’t easy, but it is worth living. I may cry a lot, but I also laugh a lot. I may get depressed, but I’m also optimistic. No matter how bad things seem right now, they will get better. You can take back control and give yourself hope for your future”. Her blog is frequent, searingly honest and brutally insightful on topics that others may shy away from.

Sheryl Chan – A Chronic Voice (www.achronicvoice.com)

Sheryl lives and blogs from Singapore, living with multiple lifelong illnesses. Her blog sets out to help other sufferers with a toolbox, but more widely to raise awareness of long-term illnesses from a number of perspectives and encourage empathy amongst all facets of society, and not just healthcare. Her blogs are frequently very practical, covering both the physical and the emotional challenges with equal frequency.

The Princess in the Tower (www.princessinthetower.org)

This site has a number of useful resources for learning about chronic pain and how to manage it and reduce it. The blogs focus a lot on the emotional impact, and ways to manage this.

Then, I also discovered some really useful communities:

HealthUnlocked (www.healthunlocked.com)

This is like a medical version of Facebook and there are different groups that you can sign up to. One of the groups is Pain Concern (a charity that also have a helpline that you can call and lots of other support tools that you can access at www.painconcern.org.uk)

Anyone can post a thread and expect to get genuine responses from others. The tone is universally helpful (in my experience) and can get some good insights. Obviously, this is not professional healthcare advice, so it needs to be seen in that context.

The Injured Athletes Club on Facebook

This community was set up by Carrie Jackson Cheadle and Cindy Kuzma to go with their book ‘Rebound: Train your mind to come back stronger from sports injuries’. They moderate and facilitate the group to get to a mix of being able to vent about challenging times, ask for advice/perspective and celebrate progress, with ‘Winning Wednesdays’, Monday Motivation and Friday Feeling themes running most weeks.

I hope that you find some of these inspiring and helpful, just as I did. If you have others that you think are excellent, then do share!

My experience with hydrotherapy

I have not blogged for a while whilst I have been trying new things, doing lots of research and trying to make progress on reducing my pain and increasing my ability to cope with day-to-day tasks and activities. It has been an interesting voyage where I have become clearer that there are many paths to recovery – and no-one has the universal answer, so you have to try lots of things! With this in mind, I thought that I would share in a few blogs over the coming weeks some of my recent experiences.

Hydrotherapy was one of the things that was suggested after each of my surgeries. It is 45 mins drive to the nearest hydrotherapy pools and there are none in my local authority area. Plus you have to have a medical referral form and go through some extra checks to get access, so it all took a bit of organising. But I think that is was well worth it, as I think that it reduced pain in the short-term and had an incremental improvement in the Range of Movement (RoM) in the scar tissue and the affected muscles.

What is hydrotherapy?

The hydrotherapy pool is kept at 37 degrees Celsius, which consistently feels very pleasant and after 30 mins of doing structured exercises feels positively hot!

It is about shoulder depth and about 10m across, so it is easy to get the benefit of the water resistance as well as the immersion.  There is also easy access, including a hoist so that you can get in and out even when your body is not working well. Given that there is only space for a small number of people, it is key to reserve the slot and be there changed and ready in time.

You can work with a physio in the session, but once you have a routine it is relatively easy to work through the exercises on your own. There are ‘weights’ made from floats to create additional resistance by pushing them down in the water and inflatable ‘noodles’ for support.

How is it better than a normal pool or hot tub?

I had tried both the normal pool and hot-tub, and would say that the hydrotherapy pool is much better.

Doing my exercises in the pool was hard work (remember that 1 litre of water is 1kg – so there is lots of weight in the water resistance), and the cooler water temperature that makes it suitable for swimming means that there is not the therapeutic benefit of the muscle release that helps with RoM and probably with the pain reduction too.

I had also used the pool to try a little aqua-jogging with the float-belt (as shown in the photo). This is used a lot by elite athletes when they have injuries and it is claimed that you can keep 80% of your running fitness if you put the same hours in at the pool. This should work really well for lower limb injuries where you need to keep the muscle memory, but avoid the impact (especially in stress fractures and some soft-tissue overuse injuries). But given that for me the inflammation affects the movement pattern, I found that it was too tough at this stage.  

The aquajogging float belt clips around you to keep you upright without your feet touching the bottom of the pool (you need a pool deep enough for this!) and you can add difficulty by holding a waterbottle in each hand and changing the amount of liquid in it for more difficulty.

The hot tub is useful for me for the muscle release and for managing some of the pain. But it is not deep enough or large enough to do all of the exercises, so it is not as good as the hydrotherapy pool. I think also that the 30 mins slot, where everyone else is also working on their exercises, brings a level of focus that really helps.

Did it make any difference?

My own experience was that it was a very supportive environment – everyone there is working on getting better and is very willing to share what they have had success with.

In terms of the physical impact, the warmth definitely had a positive impact in terms of reducing pain for a few hours (just like hot water bottles etc when at home). My understanding is that this is not universal – some people find that the pain is reduced with cold, others with warmth.

Plus, I found that 30 mins of hydrotherapy definitely improved RoM for a period of 24-48 hours and if I did it 3 times per week, I saw real progress on my land-based exercises. That said, it was positively hard work – after 30 mins the combination of the temperature and the hard work was very tiring and I was keen to get out and have a nice drink of water! And the travel on top made it quite a bit harder. So, I would say that if you have a hydrotherapy pool nearby, do make use of it in your recovery and rehabilitation.

Another self-help technique for back pain – the McKenzie method

I had lots of people getting in contact after my blog earlier this week on back pain, so wanted to quickly share this additional technique that has brought relief and recovery to many. I hope that some of you find that it helps.

For a lot of people (especially runners and cyclists it seems) back pain comes and goes episodically. For most the issue is a disc bulge (most people over 25 or 30 years-old seem to have them to some level), and the disc bulge moves slightly, compressing one of the 4 key nerves at that lumbar vertebrae level and sends white-hot pain, pins & needles and/or numbness down the leg, sometimes with symptoms in the bum cheek or hip as well.

Each nerve has a role for areas of the body and internal organs. If you are interested in understanding the link between the level of the spine (which vertebra) and the body, have a look at the spinal nerve chart: https://millerchiropracticclinic.com/spinal-nerve-chart/

A lot of people have found great relief through the McKenzie method

First of all, take this simple self assessment – answering yes or no to each of the questions:

  1. Are there periods in the day when you have no pain? Even 10 minutes?
  2. Is the pain confined to areas above the knee or above your elbow?
  3. Have you had more than one episode of low back pain or neck pain over the past few months or years?
  4. Do you feel worse during or immediately after prolonged bending or stooping; as in making beds, vacuuming, gardening, concreting, etc?
  5. Do you feel worse when sitting for prolonged periods or on rising from the sitting position, ie after watching TV or working on the computer?
  6. Do you associate your pain with any one particular activity but are generally pain-free when not engaged in this activity?
  7. Do you feel worse when inactive and better when on the move?
  8. Does your low back feel better when lying face down? (You may feel worse for a minute before the pain subsides, in that case, the answer to this question is yes).
  9. Does your low back pain feel better when you are walking?

The McKenzie Institute claims that if you have answered yes to more than 4 questions, your chances of gaining benefit from the McKenzie method is very good.

They say that if you answered yes to 3 or fewer, then you may require specialised assessment and treatment.

The McKenzie method is built on gentle spinal extension exercises

The theory behind the method is that most discs bulge out backwards, and therefore gentle extension exercises encourage the disc to change shape with more of the disc-matter at the front and take the pressure off the nerve that it is compressing.

Robin McKenzie’s book ‘Treat your own back’ is inexpensive and practical – giving a do-it-yourself plan for relief of lower back pain through postural changes, ergonomics, and simple exercises. It also provides a clear understanding of the causes and treatments of persistent back pain.

One last key tip

I think that anyone who goes to a physiotherapist with back issues is given spinal extension exercises. But I am not sure that everyone talks about technique, and it is really important. If you simply move into the spinal extension, then all of the muscles in the lower back shorten as you peel up. But if you engage your abdominals (especially the deep Transversus Abdominus) and then do the back extension, then the same muscles go into extension due to the reciprocal inhibition of the muscle pairing with the abdominals. This is what you want.

Love your feet!

I guess that I should have known how important feet are, but I will admit that I took mine for granted. And so when I lost all feeling in my right foot after my accident, I was still way too nonchalant. After all, the Paralympians run like the wind with blades – I was sure that I would learn.

The foot is so complex

Each foot has 26 bones, 33 joints (20 of which are actively articulated) and more than a hundred muscles, tendons and ligaments. Wow! And feet can move in so many directions and with amazing levels of control. And these link all the way up the leg into the lower back.

This is all so important to us, as tiny differences in the pressure and our movement at the foot level are all multiplied up through the body as the distance from the feet increases – with compensating and balancing to ensure that we stay upright and are able to do what we want to do. Think of how crucial footwork is in any fast-moving sport like tennis, squash, football, rugby, hockey etc.

So what should we be doing?

Given the importance of our feet, we really need to invest the same level of body care as we would in the other major muscle and movement centres. I went to a seminar with a physiotherapist who was proposing that runners should really do a 15 minute footcare workout every day in order to protect themselves from injury!

The toes are very important – especially the big toes

I remember a friend having an accident when we were in our 20’s and after it being crushed on a building site, he had to have the first section of his big toe amputated. This meant that balance and running were always really difficult for him, and he almost always wore walking boots with ankle support to stabilise his foot.

But it does not need to be as severe as that for us to lose mobility – in our feet and all of the way up through our body. Here’s a quick test – can you do the ‘vulcan salute’ from Star Trek (splitting your fingers between the 2nd and 3rd fingers) with each hand? Can you similarly control each of your toes?

Toes are very trainable – you only need to type ‘painting with feet’ into YouTube to be inspired at dexterity that people can develop in their toes.

A couple of foot work exercises for the toes

When sat down, can you use your toes to pull a towel along the ground? (without lifting the sole off the ground).

When you are lying in bed – when your feet are pointing upwards can you move your big toe up and down without the rest of the toes moving? And then the other toes, without the big toe moving? And now when you move your foot to point your toes, can you do the same toe flex and curl?

Difficult? You can help your toe mobility by continuously challenging your toes. Do also massage under the foot – through the arch just below the pads in the forefoot, feeling each of the bone/muscle and ligament complexes that control each toe (go gently, as it is always tender in there!).  Then extend the massaging and movement to each of the toes – pushing against your hand in different directions and with your foot in different positions.

Also, do roll the arch on a tennis ball. Be amazed by the simple test of touching your toes and remembering how far your hands reach. After 30 secs of rolling the arch on a tennis ball, focusing on those gritty, grainy parts with smaller circles. Then touch your toes again and check your reach. Amazing! (Some people sneakily have a tennis ball under their desk to do this arch-rolling in the office during the day!)

The amazing ankle

For all that the ankle is a hinge joint, you can do so much more than just the dorsiflexion/ plantarflexion movement of pointing the toes. You can actually roll the ankle from side to side in the inversion/eversion movement where from the feet being parallel, you can then bring the soles of your feet together and then roll the soles outwards.

This movement is incredibly important and useful for stabilising in walking and all sports.

So exercising it is good. Sit on a chair and with our hands on our knees to stop them moving, roll the ankle from side to side, so that the weight is over the big toe and then over the small toe. This may seem difficult to at the start, but is very trainable.

The feet are controlled from the lower leg

A lot of what happens in the feet is influenced by the leg (and indeed all of the way up the body).

Releasing the muscles in the lower leg associated with the foot movement is also very useful. It needs a lacrosse ball and careful placement and flexing, but this is worth doing daily if possible.

More inspiration

If you are battling with this, I have found the following website and podcast interesting and useful. Best of luck with getting your feet supporting your movement in the best possible way – reducing pain and increasing performance. Best of luck!

https://corewalking.com/

The other side of the opioids crisis

Following Andrew Gregory’s article in the Sunday Times on 24th February 2019:

https://www.thetimes.co.uk/article/britains-opioid-crisis-we-are-sleepwalking-towards-carnage-in-our-communities-7tjlzzq7x

And the British Medical Journal’s research that shows that between a third and a half of all UK adults live with chronic pain (defined as pain lasting more than 3 months), with a trend towards increasing prevalence with increasing age from 14% in 18–25 years old, to 62% in the over 75 age group. Hence the proportion of people suffering can be expected to increase, in line with an ageing population.

https://bmjopen.bmj.com/content/6/6/e010364.full

These made me feel the need to write to Andrew – and here is the text from my email:

Dear Andrew –

I felt the need to write to you after your articles on the opioid epidemic that you suggest is hitting the UK, as it has hit the USA. I agree with your concerns. But I think that the other half of the story is one that needs to be told too – our societies are simply are not managing chronic pain and the unintended consequences of not managing this are showing at the moment in opioids, but will move somewhere else if the solution is simply to cut down prescriptions. A friend who is a member of the Police Department in one of the northern states of the USA talks of the significant increase in the number of suicides that he now attends where people killed themselves because they could not find relief from the pain when they were no longer prescribed the painkillers.

Perhaps there is a follow-up feature with case studies of those in chronic pain who could be jeopardised by culling prescriptions and some case studies of the equally sad stories of those whose chronic pain was not addressed (which had outcomes equally, or perhaps even more sad than those featured in this week’s Sunday Times). The goal has to be for a real look at the challenges and potential solutions to this multi-faceted problem – as hopefully my comments below lay out.

My own experience is that I had an accident 15 months ago and have been in debilitating pain. I went from someone who was a keen marathon runner and representing Great Britain for my age group for Triathlon at World and European level to someone whimpering in pain, whilst lying on the floor. I freely admit that in my whole life what I thought was pain was really a little discomfort – for instance, taking ibuprofen for an ear infection, or massaging sore muscles after a marathon. And that is what is hard about pain – you can only know once you have experienced the jagged, searing, burning pains that make you think that your body will die of them (and sometimes lead to extended shuddering of the muscles, an inability to breathe properly and a racing heart-rate that implies that you are running a 10K race flat-out) and then when you realise that your body is not going to die of them, you  wonder if you would prefer that it did – as any quality of thought, life or enjoyment is out of the question. To those who simplistically suggest lighting an aromatherapy candle and practising breathing and mindfulness exercises, they are not talking of the pain that I talk of.

And so painkillers are what give you hope – after lying, shuddering for 16 hours on a bed in A&E counting up to 30 over and over and over, with a perspiration outline around you on the bed and then being told that it will be 5 weeks before you can see a spinal surgeon, it is painkillers that eke you through the sleepless hours, days and weeks to get to that appointment.

Or after surgeries, as you lie alone whilst the world merrily carries on and you try to get through just one hour at a time – sometimes not knowing whether that hour is a daytime hour or a night-time hour. Having sat with others in chronic pain, I know that people turn to alcohol and illegal drugs to escape their personal prison of agony. And sadly some people take their own lives as the ultimate escape. Taking away painkillers will only increase these other unofficial solutions. 

Through all of this the GP is the frontline. In the British medical system they are the lead contact who coordinates the rest of the treatment). The challenge is that with the pressure on the medical system, the waiting times for appointments are very long (even when you are in chronic pain) and the ageing population means that there are more people suffering. So what is the alternate option for the GP to prescribing painkillers? Who will take up the slack in the system to address the gap?

It is fair to say that the current approach with painkillers for chronic pain is a blunt tool. But if that tool is confiscated, what takes its place?

25th February 2019