To be clear, this post is on the topic of Tension Myositis Syndrome (TMS) and the related approach that is useful for treating chronic pain and conditions (it’s unfortunate that the internet is littered with references to a completey different treatment method that uses the same initialism).

Last week, for me, was nothing short of astonishing. We were on holiday for a week in the place we are moving to just as soon as the legalities are through so it was, in a sense, a taster of our future life. We also attended a four day music festival, which is one hell of a stretch for someone who had her most recent flare-up of ME/CFS just a few short months ago. I had not attempted anything so daring for YEARS!

Yet, for all that, the week could not have been more of a success…not even if I had been a fully fit “normal” person without issues such as chronic fatigue, food allergies, IBS, interstitial cystitis (imagine…four days of portaloos!) and the kind of muscle and joint pain that normally makes deckchair seating precarious even for an hour or so, let along long days of it. We were out in all weathers, from hot sun to pouring rain and wind and yet I (the person who normally has to go to lengths to avoid the slightest draught) coped with it all with a broad grin on my face, bouncing back each morning ready for yet another day of the same. With music so good and people so friendly all around me, I was in my absolute element. None of my hypersensitivities to being crowds or dealing with other people’s bad behaviours came up for me (oh, except when they ignored the no-smoking rules in close proximity to where I was sitting). I was gregarious and chatty with everyone we met and couldn’t get enough of the affable vibe of the thing, in fact it was quite idyllic and I felt pleasantly stimulated in all the most positive ways.

As it turned out, and I have no doubts whatsoever that this is all down to my work with TMS or Tension Myositis Syndrome (see my other posts on this and dive into Nichole Sachs podcast), I had no problems with any of the usual factors that challenge my life. Not only that but (thanks in no small part to a TMS-compatible IBS hypnotherapy course I have been on for 5 weeks now, using an app called Nerva; I highly recommend it and will add the link to my health resources page) I was able to eat Thai street food, drink alcohol, eat cake and ice cream and dine out in pubs for the entire week without a single niggle in my digestion…this from the girl who usually takes a week or more to recover from one meal out. This factor alone was responsible for me being able to totally relax and enjoy the thrill of behaving like a “normal” person without the constant hyperviigilence you develop when you normally react adversely to the hidden ingredients in food and drink. When the slightest niggle came up, I dealt it a skilful backhand developed out of my several weeks of plundering every TMS resource I can get my hands on (and the methods taught by Nerva really helped with this too). I’m filled with new optimism for a future life filled with far more spontaneity than I’ve enjoyed for a very long time.

All of this has been nothing short of astonishing. Add to it that I was able to keep going, with enthusiasm, from late morning till after midnight all 4 days of the festival, moving around from one stage to the next, dancing until late, going with the flow of everything and not for a moment feeling like I was physically compromised at all, it would be more apt to describe it all as nothing less than a miracle. Again, all thanks to the deep work I’ve been doing with TMS.

The sheer stamina that came out of me was also astonishing. You would think that, after years of chronic fatigue, there would need to be a rehabilitation phase but I launched like a jack-in-a-box. When we weren’t at the festival, we were walking around exploring the area, meeting with other people for meals, shopping, sight seeing, doing all the things that most people take for granted on holiday but which normally wring me out. Right up to the moment we had driven back home and unpacked the car, it was like I became this other person…the person I used to be, only much more appreciative of all the happy differences with my life of the last two decades.

So here’s the reality check: The TMS approach does not promise full recovery overnight and it’s to be expected that there will be ebbing and flowing of symptoms for a while as you continue the inner work.

We’ve been back home for a day and a half now and my body has gone into symptoms quicker than I can quite believe. If I had to nail one word to describe the response it has had, I would say that it has become more hypermobile since returning home, which (contrary to what you might think) so often means that the body cramps up in overcompensation for suddenly lax joints and other connective parts of the body, thus the effect is to be put suddenly back in a straightjacket of pain. Rather than feel devastated, I am working at seeing this as yet more opportunity to do the TMS homework and explore the emotions I am feeling since we returned and here’s what I am getting to:

It occurs to me that hypermobility, at least to me, is so much more than a physical thing (in fact, perhaps that physical effect is only secondary).

For me, it is also a state of mind (or should I say, emotions) and it is this that I believe feeds directly into TMS effects such as sudden cramping and pain.

Now I am back from the festival, back where I no longer want to be living, there has been a definite foreshortening in my body (a phrase that we typically use to describe muscle behaviour but which equally applies to my mental state right now). My leg muscles, for instance, feel heinously tight as though they don’t want to allow my knees and ankles the room to bend any more!

In fact, never mind that I felt about as physically “normal” as I could be last week at the festival, now that I am back home my muscles feel so foreshortened and tight I’m back to walking with a limp, so stiff whenever I’ve been sitting for a while, struggling on the stairs (and yes it would be so easy to blame this on “overdoing it” last week). My joints feel sore and strained. My digestion has become slow and arduous again, as though muscle walls refuse to roll their conveyor belt through. My vision is clouded and tinnitus back as shrill as ever. My body feels tense. I feel like I am locked in a minuscule box peering out (but seldom) from the hyper fixations of my immediate self and the computer I have tagged myself onto for the past day and a half because what else can I do when I feel like this? My whole range of experience has been dragged inwards, tightly, like a score of happily playing children that have been called home to go to bed against their will. Its a kind of physical lockdown that has occurred…and which, I see so clearly, has been happening so often these last two decades. It feels so real when it happens, like it is happening “to me”…so could this really have an emotional basis?

I now believe that it does and the stark difference between this week and last has convinced me even more. The sheer expansiveness of my experience last week at the festival now feels like a wistful dream. I feel sad and anticlimatic at being back to my normal, limited, life stuck at home trying to motivate myself to be productive while my husband works (especially when he doesn’t want to be working anymore either). Worse, I don’t want to be here in this place any more, I want to be moved to our new house and living a different kind of life with no more waiting it out. So are these just mental states I describe or do they manifest as physical ones in the body in someone like me? Is TMS something I can have in response to place and circumstance; do I tighten up and lock down into pain in response to being back in a situation I no longer want to be in, like a prison cell mentality that starts to permeate inside and out, and if so can I learn to liberate myself (as I clearly do when I am somewhere that I want to be…) so that my physical state does likewise, no matter where I am?

In other words, is chronic pain and fatigue a form of tantrum my body has been having in response to feeling deeply frustrated with life, (for starters) with not being where it wants to be, not living the kind of life it secretly envisions, when not happily stimulated, presented with enough variety or positive sensations, surrounded by the up-vibe kind of people that make life worth living and the freedom to move around exploring new things? Has my state of physical chronicness been a sort of protest at a life (it was unable to express…because to do so felt churlish and ungrateful) was simply not what it wanted life to be like all these years?

It’s true, I detect untold amounts of bottled frustration with the last few years. For starters, I have really not wanted to live where I do for a very long time, longing to move to somewhere that feels more like home than this soulless commuter village and its veneer of perfection that feels so fake and lacking in substance to me. I’ve felt deadened by endless years at home alone while my husband (and playmate) had to go out to work doing what has only brought both of us a lot of stress. I’ve felt countless frustrations with the hardships of parenthood (a classic source of TMS since we all feel so guilty admitting this but parenthood is far from an idyllic ride, is seldom what we imagined it to be and limits just so many of our precious freedoms, however much we adore our children). There are countless other layers of frustration on the top of those core ones I mention (not least of which has been the immense frustration of battling chronic health issues…which, as both the cause and the outcome of stress, is the ultimate snake eatings its own tail). Add to it all that we are now so close to making a change but this house selling and buying business in the UK is so tediously illogical, precarious and slow (compared to places like Scotland and Scandinavia), like some darkly conceived mental torture in every way, and its taken us years to even get to this point where we can move; so my frustration and fear of it going wrong are mounting daily. Yet, when we sample our future life (not talking about festivals but real life in a quiet village) as we just did, most of our aggravations just seem to wash away, life becomes simpler and friendlier and quieter and just ahhhh overnight, so I now know that a more contented life is possible.

How much worse is it, now that I know, to have to return to this sofa, where I’ve spent almost two decades struggling with illness (the very muscle memories of this house are all to do with living in pain) in a place with endless traffic and neighbour noise and no community feeling to speak of. Like a pavlovian dog, I feel all the accumulated stress of the years as soon as I come back to this place. From the first view of the bedroom when I open my eyes to the view from the sofa that has been my ceaseless companion for 18 long years stuck at home, it all flips me back into the loop of chronicness and, if I’m honest, I’m frustrated and angry at having to see it anymore. Even a temporary return to these old places seems to have triggered the old pain patterns, even though I start to see the reason why (meaning there’s still more TMS work to be done on this). To start to see so much of my symptomatolgy as an expression of deepest frustration and malcontent is strangely liberating because there is something that can be done about it. This is one of the reasons that seeing your chronic health though the eyes of TMS can be just so liberating.

All more food for thought as I continue on this journey towards physical liberation, this week having been such a promising taster of life post TMS that I am left both astonished and deeply heartened by it. I wanted to share the experience I have had to give hope that TMS can really present such real symptoms that they really do seem to hold us prisoner, until we start to notice the real cause of our internal lockdown, which is often an emotional one…a malcontent, a frustration, unresolved anger or words left unsaid about something else that is really holding us down. Once we start to notice how we pick up in certain circumstances (perhaps when we are away from home or with different people), it’s far easier to spot what the trigger factor is and, at least in identifying it, we start to allow up the trapped emotions that are the real cause of the pain we are in.

Yes, changing our situation is part of it (if we can, if its even practical to do so) but the trapped emotions themselves are often at the very root, especially if we have felt unable to express them because, to do so, feels like we are being ungrateful for the circumstances we have, perhaps for the people we love or who are supporting us through illness, or the home we “ought” to feel grateful for. We are all so ingrained with the mindset that other people are worse off than we are and that we should shut down our own discontent or that speaking our thoughts is wrong. Making our emotions valid, even those that are only fleeting, by allowing them to see light of day rather than remain buried…even if we keep them strictly to ourselves…is all part of the TMS approach. If doing this also helps us to face up to things that do need to change, then that comes as an added bonus. Though I am clearly ripe for the lifestyle change that is coming, I know that the real work starts while I am still here in the old life, seeing my physical responses for what they are…and allowing the emotions to have their say as they need to.

Another thing, as a footnote, I have also found that it, when you let the emotions out, circumstances have an uncanny way of shifting positively all by themselves (as has just happened to me since writing this post; something has just shifted that is allowing me to move forwards with our plans)…one last food for thought!

All that remains is for me to continue to do the work. You may not hear from me for a while; and if I am quiet, perhaps it means I am getting somewhere.