I’d been seeking validation. For the longest time, nigh on 15 years, I had trekked this lonely trek of fibromyalgia in a culture where, until recently, the very word could guarantee you a hard stare or rolled eyes and I was tired…so tired of walking the path all alone. I wanted to be carried for a stretch, or so I thought. This latest flare-up of pain and wipe-out fatigue had momentarily disoriented me, winded me and left me for blind on the side of the road.

So when I unearthed a newish clinic for fibromyalgia rehab at the local private hospital, of course there was relief. No surprise, on watching that first short video of a terribly earnest doctor taking about the long and lonely process that is FM, of how they understand and offered a holistic package, I cried…and cried…and, in the morning, cried some more. Here was a lifeline thrown, of so my most exhausted and life-weary self felt and, by morning I was set upon making an appointment, even despite the hair-raising cost, which made me feel sick to my stomach. My husband supported me all the way, so desperate is he for something to come along that coerces my usual robust self back into the building. For him, it was a no brainer I should pursue whatever I needed to pursue to get me where I needed to be and I love him for that unwavering support.

Yet even by the time I was about to set off to this first appointment, I was experiencing waves of misgivings and, in the hours before, it turned to cold terror, like a reluctance to enter a room for the feeling there is something behind the door you don’t want to encounter. Was this the response of some part of me that was reluctant to hand over some of the control of my own destiny, of allowing others to have expertise over me, or was this a self-warning “don’t do it”?

Having spent hours filling in their lengthy questionnaire and adding an “any other relevant” extra sheet with a timeline of my convoluted 15 year exploration through all the complexities of my own body, I knew I had to just face the monster and find out…were the misgivings me or “it”…and to do that I needed to anaesthetise myself. I needed to sit down with a hot pack, a light snack and watch a film like I would on a flight or when waiting for an operation; anything soothing that would take my mind off it. So I allowed myself this thing that I never do in the afternoon and I went online to choose some bubblegum for the mind.

Braced for the usual lengthy process of finding anything I was then surprised that, no, a suggestion came straight into my mind from left (or should I say, right) field and it was quite determined. A film that I consider a favourite, though I probably hadn’t watched it in over 20 years; “A moment in time”, which is a cheesy time-travelling love story with Christopher Reeve and Jane Seymour, asserted itself upon me and I knew, without question, that had to be “it”. As soon as I started watching it, yes, it was definitely “it”…for some reason, my highest aspect wanted me to immerse in this time-defying eye candy this particular afternoon and there were no accidents involved. So, please bear with me as I share this anecdote…it is relevant to fibromyalgia and whether to seek treatment but you will need to buckle up for the ride.

Why did this film hold such sway over me, all these years later, since I must have first seen in the early 80s and maybe once or twice in the last 40 years? Yet it did; it often popped into my mind fleetingly for no reason or perhaps that was also to do with Rachmaninov’s Rhapsody on a Theme of Paganini, which is played throughout and is one of my favourites but I first heard it in that film. I always associate this film, now, in my mind’s eye with one of my closest friends, though we don’t see each other more than once every two years since she lives in New Zealand. Because, when we first met, and she was helping behind the bar of the pub I used to go to, she happened to mention this was her favourite film and, there, she had my attention; and we have been friends all this time, since.

There is just something about it and its time-travelling theme; perhaps it was the first time I gave the mechanisms of time travel any real consideration, as a child. I have even found myself wondering how fervently Reeve must have wanted to be able to “go back in time” himself, as it shows his character successfully doing, after the accident that broke his neck in real life. Is that a distasteful observation to make? Maybe in neurotypical-land but to me its an obvious statement, I bet he did give it some thought (and, by the way, I just looked up his bio as it makes such inspirational reading and puts my current limitations into clearer perspective). How many of us wish we could wind back the hands of time to some earlier place before our health or other problems came along, or to a time we imagine might make us happier; so we might find ourselves wandering by a lake on a beautiful day in a less complex era…not a siren screeching, rubbish bin overspilling reality that we don’t feel like we fit into (I had forgotten all these small details in the film).

So….I started to watch the film but, with one thing or another, I was running out of time before my appointment so I decided to cut it off in the middle and save the ending for later, after I had been. The seed had been planted, I had been reminded of something important before I went into the fray, and I knew I could pick it up when I returned from the hospital; that, in some yet to be revealed way, this was all so perfectly orchestrated.

So, I went to the hospital and what played out left me with much to process but not in the way I had expected. My expensive appointment, whose swallow-hard price-per-minute was over running by many more such minutes of my own time than its own length by the time I was seen, was (really) a glorified version of many such conversations I have had with my own GP. Though the belief system was now in place for fibromyalgia to exist, hence this one new department, which is less than 2 years old (an unthinkable one when I first diagnosed myself and no one seemed to have heard the word or thought it was “just yuppy flu”), it was clear that my prime co-symptom of electro-sensitivity was not, which made us rather at cross purposes since this is my primary pain trigger. His words were that at least I wasn’t met with the degree of scepticism that many of his colleagues would have delivered since he had, at least, watched a Netflixs film about it once. In that, he told me, there were a variety of individuals with “bizarre symptoms…quite incredible, hard to believe…that other weird one, err…synesthesia…was another of them” he told me. “Yes, I have that too” I replied, to his now carefully rearranged face where the lights had gone out of his eyes since I was speaking in non-compute. I had brought two print-offs with me about electrohypersensitivity, from the World Health Organisation and Breakspear Medical (enviromental illness specialists); I didn’t even bother getting them out of my bag since I could see they would be wasted. I was so glad, when I got home, that I hadn’t brought up my sensitivity to the moon or the solar cycles…

I noticed also that when I made reference to some of the newest hypotheses around FM, he didn’t seem to be familiar or even curious as I am. Either he wasn’t aware of these studies or was not wanting to go there. In my experience, doctors don’t like people that do their own research.

Meanwhile, what was on offer was, primarily pain meds and I made no meal of the fact I was not here for them. I had reviewed these…again…before leaving home but meds for FM come with a longer list of side-effects than the symptoms they profess to alleviate and I cannot imagine why I would want to put myself through them while there are other options on the table. FM is bewildering enough without adding a cacophony of other effects that you wouldn’t be able to tell from your own; because, if there is one thing I have become aware of through ALL of this, its that my symptoms have all been here to tell me things. Maybe these are things that stretch my awareness out of my current paradigm, into the recesses of my psyche and the deep consideration of what it means to be alive; yes, into murky areas offstage, where the light is dim…but they persistently tell me these things anyway and, on the back of them and all the organic messages and synchronicities that arise out of “pain”, I have grown into the considerably more conscious, questioning, aware and fundamentally optimistic being that I am today. If those other manufactured symptoms came along to hit me, I think I would lose the will to live very quickly indeed; perhaps that’s why so many of these meds listed “an increase in suicidal thoughts” as one of their risks. Another side effect seemed to be “a drugged feeling”; so, loss of clarity, letting slip my awareness and sense of who I most fundamentally am…I’m not signing up for any of that!

Meanwhile, I could go for some scans to probe other issues that may be there though, in his professional opinion, they aren’t (and maybe thats what I really came here to hear….maybe I can let go of my darker fears now, “because the doctor says so”). Of course, the fact I’m a yogi ensured that I baffled him with my mobility. Could I do most of his assessment movements with apparent ease? Of course I could, I’m on my mat twice a day these days…and that’s not to say they didn’t give me intense pain…but I imagine most people who walk in the door with so many years of FM behind them don’t stand so erectly or balance on one leg the way I do!

If there was nothing alarming him (and the thing most alarming me, he doesn’t believe in so its not his speciality) these scans would gain me what? If there is osteoporosis, well, that happens anyway. If I had another ovarian cyst (an issue I raised given the location of some of my pain), they probably wouldn’t operate on me given my history, unless there was real cause for concern, which he doubted. If early MS was lurking there, and it could be as I tick several boxes on the list of pre-traits, then is there a cure or would I be setting myself up for the mind-trap of lost morale and abject fear? The latter, I suspect and I prefer to operate on a “need to know” basis. And how, I reminded him, could I put myself through an MRI as someone so profoundly affected by EMFs. Oh yes, he had forgotten about that, he confessed, though we had been talking about it only a moment before. Sometimes scans area warranted, I get that…and sometimes hospitals and all their interventions are the best we have on the table and I am sure I would be deeply grateful in such an acute situation, but not today. Why court information I don’t really need and which makes something feel inevitable that may still be capable of being more flux than most people are able to grasp with their logic-seeking minds (and the softer they are left, the easier they are to change into something else). I reserve the right to go back and have those scans done if I ever feel the pressing need to but for now, the quantum realm is calling loudly.

Then, of course, there was the “posh” physiotherapy package yet, when pushed, even he admitted that the main edge of their approach was that some people like to have the feeling of the full attention of the therapist versus, say, a hydrotherapy class at the local pool. That this is of merit to people on insurance and who don’t have a daily yoga practice or who are really struggling to move at all, I don’t deny. However, is it really a useful add on for me, along with the clinical psychologist that works alongside the physio, given all the work I’ve already done in this area; and at what cost? So far, I haven’t been able to extract that information as each stage involves another initial consultation with a particular specialist, like this one (how long had we been sat there chatting now, at £7 a minute?) and, suddenly, I wasn’t sure this was the way I wanted to go. My bubble was quickly deflating. I knew I could reconsider at a later date but right now, it wasn’t calling me and the guessed-at cost of nine multi-discipline weekly sessions (designed for people on pain meds; I know the speed my body prefers to work) and another review like this one felt prohibitive. He brought up “what was I doing for a living right now” (it was on my form) and it was on the cusp of my tongue to point out that my sole earnings for this year so far had been due to the licensing of one of my paintings for a run of 40,000 art books in Paris, where it was being used both on the cover and as a pull-out leaf inside (sounds glamorous, huh?) and that, for that, I had earned slightly less than enough to pay for his 40 minute consultation….but, in the way I have learned to in this no-one-gets-my-neurodiverse-sardony way, I bit my tongue and let it pass!

Yet I already knew, as I sat in that chair noticing the way I almost couldn’t wait to dash out of it, to shake the electric fizz off me (the building was like a barrel of electric shocks), back to the lobby and my waiting husband, like someone launching off a starting block, none of this had been a waste of time; it had all played out to perfection.

I had wanted validation and I had got it; he must have said out loud, three dozen times, that I had fibromyalgia and that is in my notes. What did I ever think this validation would get me? Certainly not a prize, nor sympathy, not even some benefits or a car parking place (do I even want one…nothing more guaranteed to me feel broken). No, it got me nothing more than the likelihood of more expensive insurance and, perhaps, less of a raised eyebrow of “really…” from the next GP I happen to see; and the next time a person says to me “oh, who diagnosed you” I have that socially-acceptable get out of jail card that it was “someone who knows”. In the meantime, for me, it mostly got me closure. As I was aware of the whole of that morning and the night before, as I wrote up my timeline of the last 15 years, what it REALLY felt like I was doing here was wrapping it all up and signing it off. In telling it as it has been, to someone whose very job title assured me he would have to take it all in, I had carried out some very essential function for the human psyche, which is to have our story told and to have someone else sit down and listen to it. To be acknowledged and heard. After that, well, it was done.

And back to time? What of that topic and why had that felt so important that it was literally jumping up and down trying to get me to watch cheesy movies before I went off for this very odd experience in a private hospital? What answers did the end of my film have in store?

Well, it was all so obvious to me, even before I left for the appointment, what I was meant to revise by watching this film again after all these years (had I even thought into these details the last time?)…and, really, beyond the cheese it is a far deeper plot. Because, take the rather saccharine and unfeasible flash romance out (and it really is the least interesting part of it all) and what are you left with? Well, the male lead Richard Collier is staying in a Grand Hotel and sees a picture of a beautiful woman that captivates him and who was staying at the hotel in 1912 so he decides he has to time travel to meet her. In order to do this, he has to fully believe he is in the time he wants to time travel to, even though he is already in the right place. So he realises he has to dress to the part, with authentic clothes from at least pre that time, and to make every detail around him of that era, even the coins in his pocket (the film skirts over the fact that all the curtains, carpets etc in his room are from circa 1970s) and then he self-hypnotises himself to believe that he is really in the room on a particular date in 1912. Of course, he succeeds and falls in love with the woman. But when he accidentally pulls a 1979 nickel from his pocket, which breaks his construct that he is really there in a much earlier time, he finds himself tumbling forwards in time again, and that he cannot seem to go back now, much to his despair so, ultimately, (SPOILER ALERT) he decides that death and the chance to reunite with his lost love is preferable to being somewhere he no longer feels like he belongs. You will really have to watch, or read about, the film to fully get what I am taking about (I’ll make it easy for you HERE) but hopefully you get the gist about the need to fully believe you can bypass linearity in order to do it…and that’s whether your intention is to move backwards or forwards; its all the same!

The thing is, what the film is about is quantumly feasible and it’s available to us as a healing modality in every moment; I already know that and have been actioning that approach with the Dr Joe Dispenza modalities I’ve been using lately. Outside of linearity, we can wind forwards or back at will since there is no time…but we have to fully believe we can and there lies the catch, or, the nickel-in-the-pocket pitfall. The disbelief of a questioning mind has to be fully suspended and that, for Richard Collier, is where the authentic clothing and coins came in. For those using Dr Joe’s methods, his processes get beyond the disbelieving mind…which is why he delivers exceptional results that go far beyond conventional medical science.

And if I was to become a part of that hospital culture, I knew straightaway, I would surrender my ability to suspend the paradigm in which I am broken and need fixing. Hell, as soon as I walked though that hospital door, the very feel of it, the smell, the high-back chairs, the san soap at every wash basin, reminded me I was “sick”. It’s why I recoil from hospitals and always have. Maybe its a UK thing…I sense the culture is very different in other places but its such a paternal, heavy energy of feeling small having to do as you’re told over here once you’re through the door, and that’s not about some of the wonderful front line staff. Me seeking validation from a medical “expert” was almost like seeking the approval of a father figure, I realised, and I need to look into that now I’ve identified it (I recognise it in the attitude of my mother who thought doctors could do no wrong, we were all taken there for every slightest thing and yet they missed her cancer diagnosis, telling her she was wrong, even when she was begging for urgent attention). They are falible and they don’t have all the answers, suffice to say. If I ever really need one, and one day I might, then I will deal with that as I have to but, for the meantime, why introduce the mentality into my paradigm when it’s optional? Why (and I recognise this thinking in me) rehearse it for a rainy day by slowly introducing it into my world, before time? I knew it would only nail me down to the floor, seal certain inevitabilities. Not quite as much as taking meds that mess with my mind or scans that add radiation and other toxic load…but pretty much the same, in its way. I suspect, in the future, we will look back to the healing environments, modalities and beliefs of these times and consider them heinously antiquated as the future of healthcare does not feel like something that adds harmful effect to the load of already being unwell or the belief that you are broken in order to get better…but that is then, and we are not there yet (unless we travel through time).

Meanwhile, it is a world that is not for me…I was just visiting…and I have only come out stronger and more determined than I went in, which is as it should be and all I could ask.

Did I gain benefit; well, yes if not in the way you might expect but then that is me all over. While I am alive, I intend to do alI can to preserve this ability for the surprising, the nonlinear, the fluid to occur and there is very little facility or even room for that to occur in the modern paradigm of healthcare. There are others (and I know one such) who can make use of modern allopathic medicine whilst playing with the quantum aspects and gain the best of both worlds and I am in awe of that; but for me, at least for now, a tick of validation was all I required of it and the rest I have well-and-truly covered myself. A stuck part of me needed to know what it felt like to be seen as someone with fibromyalgia by someone in the medical profession, perhaps especially because I received such disparaging treatment in the early days. Well, now I know.

In fact I never felt fonder or more committed to the natural healing modalities and remedies this doctor scanned his eye over with such disinterest after I shunned his prescriptions. My enthusiasm for yoga is so potent today, my yoga teacher husband is getting quite excited and begrudges nothing of the fees we just paid to get me there. I newly realise that its not that I don’t have a plan of action; but that it is me that provides that structure…as well as the quantum spaces in between. It would be nice if allopathic medicine could truly mix them together more than it is currently doing but I now realise the world “holistic” was being used by this medical doctor in a completely different way to what I have come to understand since the hard sciences were still calling out the tune. Am I left with pain and limitation this morning? Yes, I am. But what would be the difference if I went the doctor’s proposed route except I would have turned that pain off with drugs and ceased to listen to my own body. I had always wanted to know what it felt like to sit down with a doctor and be taken seriously, at least for the primary issue, and now I knew and could tick that off my list. However, I also know the rest of the package is not for me…its not my route and, suddenly, I feel so much clearer about what my own route entails. I almost feel excited to get back to it. I know more about healing than I tend to give credit for and its time I honoured that.

How do I know I’m not cutting off my nose to spite my face? That its not fear of the expense or of tacking this the way everyone else tackles it? Because of the feeling I get in my guts today, and the immediate sensation of being lifted and having renewed energy. My husband could sense it as soon as I got back in the car. My sister could feel it across the airwaves; I was back in the building, my old determination restored. Because my route feels like my authentic route, my destined route, the one that delivers unexpected gifts every step of the way…and most of all, because I am fully aware of what is going on, nothing is numbed down, no personality dials turned low and that includes my awareness of nonlinearity and that I can achieve pretty much anything with the power of the mind. Like Richard Collier, I just need to get all the details looking authentic for the time-space (rather than space-time) I choose to land in. Surrounding myself with all the trappings of wellness has always served me very well and got me this far!

And somewhere in time I am already well…I only have to go there! I’m off to do some yoga and then I could use some laughter therapy 🙂

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I am right to be so reluctant to risk the numerous side-effects risked when taking pharma drugs prescribed for fibromyalgia. Well, apart from my own grave misgivings, in a report about a study of two typical drugs used for fibromylagia, two medical experts concluded as follows (extract from this article in HeathCentral):

“This is a very important study,” says Fred Wolfe, M.D. of the National Data Bank for Rheumatic Diseases. “There’s an enormous amount of advertising suggesting that these drugs really help, whereas the research data show that the improvement is really minimal.”

Treatment with drugs alone “should be discouraged,” the reviewers added. Instead, the review authors recommend a multi-faceted treatment approach including medications for those who find them helpful, exercises to improve mobility and psychological counseling to improve coping skills.

“The medical field does poorly with the treatment of fibromyalgia in general,” says Brian Walitt, M.D., M.P.H., a co-author of the review and an expert in pain syndromes at Washington Hospital Center in Washington, D.C. “Chasing [a cure] with medicine doesn’t seem to work.   The people who seem to me to do best sort of figure it out on their own by thinking about things, getting to know themselves, and making changes in their lives to accommodate who they’ve become,” concludes Walitt.

 

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Disclaimer:

This blog, it’s content and any material linked to it are presented for informational purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. The material and opinions shared are anecdotal and should not be considered to be medical advice or diagnosis. This article does not constitute a recommendation for the treatment or choices described and the effects related are my own anecdotes, not a prediction of how anyone else might respond. Please consult with a licensed healthcare professional if you have or suspect you might have a health condition that requires medical attention or before embarking on a new type of exercise or physical activity.