A Worrisome Malady & It’s Not Diabetes.

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

The sunlight dapples the autumn leaves outside the window and whale song gently drifts around me.  I am lying on a massage table, and a track-suit clad man is kneading the soles of my feet, part of my five day “Pamper Package” at a health retreat.  Unfortunately as I should be lapsing into a calm and meditative state I can feel my muscles tensing as I grow increasingly irritated.

As a type 1 diabetic for over forty years, I figure I know the limitations and failings of western medicine better than most I cannot remember a day in my life in which I have not had at least one injection, I draw blood from my fingers up to six times a day and in between I keep a lot of medical appointments during which an assortment of professionals try to help maintain my senses and bodily functions.  This is life as I know it and it IS a good and fortunate life.   I would like a real cure for diabetes rather than the unsatisfactory treatments available at present, but this is unlikely to happen anytime soon so like many other similarly afflicted children and adults I just get on with life.

The therapist, however, is having trouble masking his disapproval of my enthusiastic embrace of what he calls chemicals.  The gist of his patronising banter is that western medicine is good at producing chemicals (the tone in which he says this implies that said chemicals are something akin to dog excrement) but alternative medicine intervenes to prevent the development of the illness in the first place or to produce true healing.  Trying to be open to new ideas I ask what reflexology and traditional Chinese medicine (the two are not connected but just what we were discussing) might be able to do to assist in managing my diabetes.  He says that it would probably not be responsible to suggest he could “get me off insulin completely” given that I had been dependent on it for so long.  Oh how tantalising-the hint that maybe, just maybe there was hope, combined with the disappointment and frustration that it was probably too late.  Not only would it be irresponsible to suggest he could get me off insulin, it is in fact illegal.

This is so not what I had in mind last July when over the second bottle of Shiraz accompanied by a delightfully aged blue vein cheese, lavosh and the appropriate bolus of Humalog of course, my friends and I decided we needed a detox.  Plans were discussed, bookings made and new physiques and unstressed psyches envisaged. Two of the foursome bailed when details became clear, you could take things too far you know-“not going if I can’t have wine” and “no way if there’s no coffee” so that left Sarah and me headed towards the foothills of the blue mountains for 5 days of fresh mountain air, exercise, and healthy food combined with various pampering spa treatments.

I began to wonder about the wisdom of our decision only when we were approaching our destination.  The retreat is marketed as being “at the foothills of the Blue Mountains” sounds lovely, but as we approached our turnoff I had no sense that we had ever left the western suburbs of Sydney.  At the end of a street lined with brick veneer houses and federation-style fences we saw the sign announcing “Australia’s Premier Health Retreat”.  The single-storey white building with a gentle ramp leading to the entrance reminded me of something, then I realised what it was-Leyton Lodge, the nursing home where my Grandmother had lived.   “Maybe it’s nicer inside” I tried to reassure myself as much as Sarah.  Inside, the hushed tones, the slight hint of pine-o-clean in the air and the overheating only served to confirm my worst fears.

We had splashed out for a deluxe, twin share balcony room and were pleased to hear that the balcony rooms were in a newer building, yes these rooms were classic early 70s budget motel, the ensuite was windowless and boasted a bath/shower and the toilet worked on a septic system, a fact which we couldn’t forget as from time to time the pine-o-clean couldn’t quite overcome the odours of the septic tank and this had nothing to do with the high-fibre diet.  

As we investigate our surroundings, the dining room, the gardens, pool, tennis court, gym and lounge we wonder where all the other guests are, it is eerily quiet and nobody seems to be partaking in the activities on offer.  Over our low-fat vegetarian lunch, I learn the reason for this.  Many guests are fasting, a regime lasting up to seven days in which people consume only small amounts of vegetable juice five times a day, some people drink only water for a time.  A couple of the people at lunch have fasted during previous visits; they say that they spent most of the time sleeping and that it is very exhausting.  Those fasting are sensibly forbidden to exercise during their fast and are not even allowed to float in the swimming pool lest they faint and drown.  Naturopaths provide counseling and monitor your health and progress carefully throughout the ordeal. This explains the wan figures that I see shuffling about occasionally, not to mention the clinical looking staff walking about purposefully carrying urine samples.

Later in my stay I talk to Dorothy as she is coming off her fast.  She is sitting in front of a bowl of delicious looking chopped fruit,  it will be her only meal that day as food is reintroduced slowly.  She looks fragile and pasty, but believes that her neck pain which was so severe she couldn’t turn her head has been significantly improved by the detoxifying process and says her range of movement is better.  Maybe it is this sort of result which makes people so devoted to the retreat.  Nearly everyone we meet has stayed at least once before; some have been visiting regularly for more than twenty years.  I expected my fellow guests would mainly be women in their 30s to 50s but am surprised to see all ages represented and a number of men.   The oldest person I spoke to was ninety and the youngest a sixteen-year old schoolgirl who had come with her mother.  Some have come to seek help with particular issues such as giving up smoking or losing weight, mostly though when I talk to people about why they are here though they simply want to feel better.  

I ponder this common pursuit of well being as Nik delivers the “Empowering Health” lecture.   We are encouraged to “Check in, that is to develop the habit of frequently stopping for just a few minutes to ask yourself, how am I feeling now, what’s happening inside of me? Am I totally at peace?…”.  I start to worry about whether I am at peace and what exactly is happening inside of me doesn’t bear thinking about-has my liver finished processing last weeks Chardonnay binge and surely the cholesterol deposits in my arteries couldn’t be too thick yet could they?  This checking in sounds like a road to self-absorbed hypochondria to me!  Just as those who are rich are never rich enough, how can we ever feel well enough and totally at peace?

According to seventeenth century author and moralist Francois de La Rochefoucauld Preserving health by too severe a rule is a worrisome malady.” and this sums up much of the health farm to me.  Starving yourself seems to be willingly making yourself, if not ill, at least too weak to enjoy life and the therapeutic emphasis reminded me of a hospital rather than a spa.  I don’t particularly need to recount my medical history in a clinical setting and discuss what it is that I need healed and be advised on how, or worse why it is too late to be properly healed when all I want is a massage and a pedicure.  There will be plenty of time for enjoying the nursing home ambiance in one’s dotage.

For me each day well lived is a victory over disease and each time I inject the synthetic hormone that sustains my life I am grateful for the time it buys me.  My sojourn at the retreat made me realise I don’t need healing and I certainly don’t want to be made to feel as though I am ill when I’m not.  I want to live life to the full in all its chaotic fury and toxicity, bring me a steak and a good bottle of red!

9 thoughts on “A Worrisome Malady & It’s Not Diabetes.

  1. Oh dang Melinda. I bet you’re kicking yourself for not going to the Health retreat a few years earlier. You may have been able to get off insulin completely. Just a thought, would you still be writing blogs for other T1s or just want to put that part of your life behind you completely and no longer associate with us pancreatically-challenged poor souls? Sorry for my cynicism. Your words bring to mind something that happened to me recently. I have a few facebook ‘friends’ who I have never met and we chat about a type of plant we all collect. Recently, one was visiting my town and suggested we finally meet for a coffee. In the meantime, she had posted a ‘cure’ for T1 on another friend’s page. It involved eating a particular grain and stated that Ds could go off insulin completely if they ate the grain. I was very concerned and messaged her that this information was dangerous and please tell her friend to continue with insulin and get her doctor’s opinion before doing anything like that. Friend got most irrate with me and did not keep our coffee appointment.

  2. Who needs enemies when you’ve got friends like that hey Jen. I know what you mean, the most frustrating thing is, you explain why their “cure” won’t work for type 1 and they respond with “well if you don’t want to get well…..some people need illness for their identity……” or similar rubbish that makes you want to smack them in their smug head.

  3. People who really matter, usually don’t do that stuff. Not always the case, I know. The rest, who are sure they know exactly what you can and can’t eat, and what kind of foul juice you need to drink to get rid of your diabetes, or know for sure how you ‘caught’ it in the first place, are mostly not worth the energy. I’ve learned to say things like, “oh I heard that too”, or “that’d be interesting”. It appeases their egos and it’s not worth my time or energy to do or say anything different unless people ask. Then I’m happy to explain. As soon as the media gets things about right, medical people are taught properly, and alternative medicine stops thinking it can cure everything because it knows everything, people with all kinds of diabetes will then have a much better chance of not encountering so much ignorance. The fasting thing – know lots of people who do it and feel fantastic for it. I’m lucky if I can get through one day on vegetable juice.

  4. Yay Mel
    Ditto – I smiled in appreciation as I read your thoughts on “A worriesome Malady…and it’s not diabetes”… (in fact ALL your blogs ring true with me and are a constant source of reassurance in this T1D misunderstood world), but this one was brilliant, and so true – over my last 40 years with T1D, I too have had many amusing (frustrating) and probably well meaning indiciduals and indeed organisations purport misleading, misconceived, dangerous, and downright ridiculous ideas to me about T1D (mainly just D, unknowing of the difference), and it’s provided a constant source of amusement! Arrrrrgh!
    Love your work!!!

  5. Thanks for the comments Sooz and Gina.

    Sooz, you’re right but it gets under my skin when people think that I and hundreds of 1000s of others would ignore a cure for a disease that is as crappy as type 1 diabetes. We live in hopes the the media, traditional and alternative/complimentary medicine get their acts together 🙂

    Thanks for your kind words about the lbog Gina, sometimes laughter is the best medicine (except for insulin of course), otherwise you would go crazy worrying about all the ignorance out there.

  6. Thanks for your great post Melinda. Your inspirational writing and insights into living with T1D must provide such valuable information to so many.

    Sorry to here about your recent experience at that health retreat in the Blue Mountains. To be ‘treated’ with such condescension – and ignorance – is certainly not what you went there seeking!

    Cabarita Ocean Health Retreat is a complimentary health centre and would have a more sensitive approach to a medical condition that requires a person to take medication to keep them alive and healthy.

    Here, we know that a person with diabetes would be required to keep taking insulin and checking blood glucose levels everyday, as there can be a tendency for the people going to a health retreat to go into hypoglycaemia. They may need to adjust insulin levels and may need a snack to take with them at night such as a Banana or apple. This may be eaten if required for extra blood glucose or on rising before exercise.

    We understand that Type-one diabetes is an auto-immune condition and is normally an illness that requires a lifetime of health management. Wellness, lifestyle & dietary education would be a part of what our retreat can teach a person with diabetes. The menu at Cabarita Ocean Health Retreat would be very complimentary to a person who has diabetes – type I and type II.

    We wish you and your readers good health on your journey.

  7. Thanks for stopping by and commenting COHR. People with type 1 spend their lives juggling insulin doses, food and exercise so we’re unlikely to need support with any of that when attending a health retreat, but yes it’s nice if one is in discussions about complimentary medicine and health then advice and comments are sufficiently informed, so thanks for demonstrating that you guys have some knowledge of type 1 and type 2 diabetes-much appreciated.

    I’ve often pondered the notion of organising a type 1 wellness retreat, loosely focused on thriving with diabetes and on swapping stories and ideas and experiences with other type 1s in a lovely environment with activities and healthy food. If and when I’ll be bearing Cabarita in mind.

  8. Oh Mel, I think you need a proper spa treatment to get over this one. It actually sounds like the place (I won’t name manes) where a friend of my MIL’s used to go regularly to fast and eat only vegetarian foods. We went to a ‘visitor’s day’ once – if it was meant to inspire us to go there, it failed miserably. I always thought Molly was much nicer when we met at barbecues and wine tastings – she wasn’t starving then.

    Most people really have no idea about diabetes, either T1 or T2, although most know more about T2. I’m truly sorry you had to go through this experience – athough it give you something to write about.

    1. LOL Jane, it has given me something to laugh about. You’re right though I DO need a proper spa treatment 🙂 Cabarita Ocean Retreat who commented above sounds nice…as I said in my reply to them-one day I’d like to organise a t1 group spa retreat, a little bit of inspiration, experience sharing and lots of pampering-some wine and lovely food would just top everything off nicely. *sigh*

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