Cure me!

I’ve written variations on this post over the past couple of years, but it’s always worth repeating for new visitors to my blog.

None of us want to be sick.  I’ve lost virtually my entire adult life to illness and it’s not a path I would ever have chosen.  I was bedridden from 26-36 at a time when my healthy friends were marrying, having children and developing careers.  I’m now 48 and I still spend 17 hours of every day in bed.  I still have no career, no partner of any description let alone a husband, live in increasing poverty and the simple tasks of every day living are a constant struggle.  It’s not much fun.

But in many ways I’m one of the lucky ones.  I developed ME in 1996 and it only took me 6 years to realize that:

  • There is no cure for ME and
  • I would be sick, to varying degrees, forever.

So when I was diagnosed with both EDS and MCAD, neither of which are curable or particularly well treatable either, it wasn’t that much of a big deal.

I have friends who, 20 years on, still can’t come to terms with the fact they are chronically ill with a disease (or diseases) for which there is no cure or really effective treatment.  I can’t image how stressful that must be.  To search for decades for something which doesn’t exist.  To not be able to find peace with your situation.  To constantly be longing for a non-existent future and, by the very nature of that, not living in the present.

That’s not to say you should give up trying things which might help.  One of my friends was bedridden with ME for 15 years before discovering that low dose Naltrexone helped her enormously and she now lives on her own with the help of Carers.  But I look at posts on the ME Association’s Facebook page from newly diagnosed people asking if L-glutamine will stop their pain, or if Lymphatic drainage will cure them and I want to scream “OF COURSE IT WON’T YOU NUMPTY.  IF IT DID NONE OF THE REST OF US WOULD BE SICK!”.  I don’t though, cos they need to come to terms with the fact there is no cure or effective treatment in their own time and in their own way.  It’s really tempting though!

In America in particular, where money buys you anything, my sick friends are often taking 2 dozen pills and potions a day and trying really weird and wacky treatments like hyperbaric oxygen and I just watch the crazyness with an aching heart.  I have friends who tried all that shit 20 years ago and, spoiler alert, they’re still sick and financially destitute to boot.  That would be because ME isn’t a curable disease, particularly if it’s complicated by other diseases as it so often seems to be.

I’m now going to get comments from people who know people who were really ill and are now ‘cured’.  This is why an accurate diagnosis is crucial.  There is no diagnostic test for ME and because of that people get diagnosed with it when they actually have a variety of other diseases.  They then try a gluten-free diet and, voila!, they’re all better.  The fact they obviously didn’t have ME in the first place never crosses their mind – they have the cure for ME and are determined to preach it to the world.  They annoy the shit out of me.  And don’t get me started on people who are cured by eating medjool dates or wheelbarrow loads of kale because they annoy me even more.  Complex neuro-immune diseases are not cured by eating an anti-inflammatory diet any more than they would be cured by 3 pints of a lager and a packet of crisps.  The very idea that diet cures disease is so bonkers I have no clue why the myth still perpetuates.  Actually I do know.  It’s born through desperation and I can understand that, if not embrace it.

I know some people with EDS who have been helped tremendously by physiotherapy or prolotherapy and I’m delighted for them.  I’ll be interested to see how that pans out when they’re 50 and menopausal though – I didn’t sublux a joint til I was 45 and my hormones did a runner.

In respect to Mast Call Activation Disorder the one thing reading Dr Afrin’s book showed me is that none of his patients were ‘cured’.  He helped some and didn’t help others no matter how many drugs he threw at them.  When you don’t know what causes a disease it stands to reason you really don’t know how to treat it, let alone beat it.

Nothing I say, however, will stop some people from chasing the dream of a cure.  In their hearts they know it’s futile but it’s become their reason for being.  Every last ounce of their precious energy each and every day will be spent on 2 dozen forums excitedly chatting to other people trying the same wacky, and pointless, treatments as them ignoring the fact there are no ‘cured’ people on the forum, or anywhere else come to that.  Chasing the cure gives them a goal, a purpose for the day when they have lost their sense of identity and reason for existing in the world.  I get it.  Truly I do.

None of us wanted this life.  But it is what it is and it’s still possible to find purpose, meaning and……dare I say it……joy in amongst the chaos and uncertainty.  For me that’s found in nature, my dog, my photography, helping my Church and my community as a volunteer from my bed, looking in on my 86 yr old next door neighbour who’s just lost her husband, blogging and hopefully helping you all wherever in the world you might be.  Focusing too much on our limitations, our pain, our suffering is unhealthy and we’re already sick enough.

We have to find a new way in this world we didn’t want or choose.  Does that mean I spend my days in a happy-clappy-zen-filled haze?  Don’t be stupid.  I get fed up, depressed, angry, frustrated, tearful, resentful, suicidal and spend a large part of every day bored out of my skull.  But then I did all that in my healthy life too – I had heartache, depression, grief, friendships which disintegrated, cheating boyfriends, money worries, time pressures and trust me when I say that doing the filing hardly filled me with job satisfaction.  It wasn’t all rose-tinted and fabulous, no-one’s life is.

“With all its sham, drudgery and broken dreams, it is still a beautiful world.  Be cheerful. Strive to be happy.”
Max Ehrmann, ‘Desiderata’

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14 thoughts on “Cure me!

  1. Elizabeth Milo

    Hey, I’M gonna try hyperbaric oxygen! But, I’m not looking for a cure, just trying treatments that can potentially make me feel better. That’s always been my goal. I ignored hyperthyroid symptoms for years and then I ignored MCAS symptoms for years, but there’s no ignoring ME and anything I can do to help my immune system have the upper hand, I’ll try. I’m with you– I don’t believe there will ever be a cure (and think it’s similarly futile searching for a “cause”) and I know I will struggle with my health and energy for the rest of my life… But I don’t know if I’ll ever stop trying treatment. Just like a low-histamine diet or antihistamines can curb symptoms, I’ll keep dabbling to see what else might give a better quality of life (because sometimes I manage to find something helpful like my immunoglobulin infusions 😁).

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    1. Jak Post author

      Oops re the oxygen treatment, sorry! I hadn’t picked up on it being something you wanted to try.

      I didn’t find anything which helped my ME and, apart from the one friend with the naltrexone, neither have any of my dozens of long-term severe ME friends which is why I’m so jaded about it. But then, I have 19 years of ME on you so maybe you might feel differently in another decade or so 😉 Or you might not – I have friends still trying treatments out and if that helps them through then it helps, psychologically if not physically.

      I’m absolutely thrilled your infusions are helping 🙂 It’s fabulous!
      xxx

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      1. Elizabeth Milo

        Haha, I thought that hyperbaric oxygen comment was totally because I’d mentioned it recently. And you know I would never mind if you DID rant at me for trying loopy things and taking fist-fulls of pills. I think it’s mental myself most of the time. But here’s what I like about my doctor: she doesn’t care what my diagnosis is, she’s chipping away at each thing she finds (low IgG, give me infusions; low hormones, give me hormones; candida, let’s try antifungals…). And if I can get my blood pressure up a tiny bit and it makes me feel better–because of course it would–I’ll try the meds, fluids, salt-loading. Basically I’m saying you can search for a better quality of life within this disease without it being a futile search for a cure. In the end, I don’t care what eases my headaches or helps my sleep–be it treatment or just time–but I can’t sit passively by and wait.

        PS: I’m not feeling defensive (in case that’s how this comes off), I think this is a really interesting discussion and have thought about it a lot.

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        1. Jak Post author

          The whole treatment thing came up in a phone conversation I had with my long-term ME friend last week. We were talking about the fad ‘cures’ which come round every few years and the oxygen thing came up, along with the Perrin osteopathy technique – both seemed to go out of fashion for about 10 years but have now popped up again.

          I’m old enough to remember the “Big” American support list Co-cure back in the 90s which is where all us MEers got our information at a time when the Internet was in its infancy. Ampligen, Oxygen, Bee propolis, l-glutamine, l-carnitine, vitamin C etc etc were all being tried then and as far as I know no-one recovered to any substantial degree. So when I see it all being done again I do kind’ve despair that proper treatments still aren’t available 2 decades on and patients are still left trying all this pointless stuff 😦

          If we had a MS diagnosis, or a Diabetes diagnosis, we wouln’t be trying to cure ourselves. We’d have proper treatments. Wish it were the same for ME and patients didn’t feel so desperate xx

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          1. Elizabeth Milo

            So very true. I have an Irish friend in New York who credits Perrin with giving her substantial improvement, so that was on my research list, too! And, of course, people who say they are only functional because of Ampligen. It is quite depressing/infuriating that it’s the same straw grasping twenty years on. I love being able to hear your perspective with the advantage of hindsight. 💗

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            1. Jak Post author

              Why, when we all supposedly have the same disease, does Ampligen help 1 person but not the 100 others who try it? This is what infuriates me. Why are no proper records being kept, no proper trials being carried out?

              As I said, my one friend has improved 40% on Naltrexone but dozens of our other friends tried it with no success and it made some lots worse!

              Most treatments are at least 75% successful for all patients who have the same disease process. If insulin only helped 1 in 100 diabetics it would never be offered as a treatment for diabetes.

              The fact that, decades on, we are still trying the same ineffective treatments with the outcome a game of Russian Roulette makes me so angry. We have the same disease process – it stands to reason there is a treatment out there to help the majority of patients (if not cure us) so why are we no nearer to finding it?

              As you know, the second I stopped trying all sorts of ‘treatments’ was the time I started to improve. Lord knows what some of that stuff was doing to me.

              As I said in my post, we should all try properly-researched and licenced treatments because there’s always the chance this might help some of our symptoms – I’m not anti that in any way especially in the early years of chronic illness. My point was there is no cure which is the goal many people still aim for. x

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              1. Elizabeth Milo

                Oh, I know and totally agree with you. I guess in that respect I’m happy I got the hope slapped out of me early on. I really never thought I could find a cure once they’d ruled out everything else. I get self-conscious sometimes that I try so much (futile) stuff and then I get self-conscious other times that I don’t try enough! Anyway, as always, love your perspective on these things. X

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  2. frank

    I am sorry for intruding here, I was searching for information on EDS (a friend is experiencing this alongside of other issues). I would like to say that these posts are eye opening for those of us that are ignorant of the impacts of EDS and complex illnesses on the individual. I am already aware via my friend that she is not getting enough attention in her country and feels side lined. Our doctor, specialists and carers should be reading these as well. I personally stand more educated so thankyou Jak and community.

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    1. Jak Post author

      You’re not intruding at all Frank and I’d like to thank you for the comment 🙂 Unfortunately care for complex or “rare” diseases is a post-code lottery. Not only does good care depend which country you live in, it also depends where in that country you live. Care is available in the south of the UK, for example, and not in the north. I receive no help or support for any of my 3 diseases, so I do empathise with your friend’s situation. Your friend is lucky to have someone in his/her life like you who cares enough to look the disease up. Jak x

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  3. Karen, The Walking Allergy

    It’s so tempting to try this, try that. I don’t know how many brands of potassium before I gave up, and got the pure injectable. I’m one of those people on the 12 meds and the 4 supplements. I have a new functional medicine doctor, and one of the things she would like to do is remove one medication at a time, very slowly, then re-introduce it, and see what happens- under Dr Afrin’s guidance. A rather stark difference from the ER doc who said to me “You’re sick because you are on all these meds. We’re going to take you off everything, and see what happens.” (Are you INSANE??? Even if getting off meds would help- stopping them all cold turkey would make me incredibly sick, potentially even do me in.

    First, get my body back in some sort of balance- I’m miles more functional now than I was 6 weeks ago. I’m still just as ridiculously reactive, but I can think again, I can do more than one thing a day, I’m actually regaining some muscle (I still have to rest on the stairs, but I’m not crawling) For me, it’s essential that anything I try is actually relevant for me. (Classic example- ER Doc knows I’m malnourished and anemic. Tells me I have to increase my iron intake. Damn good thing I waited until I’d had a blood test… My iron is actually high. I’m thinking adding an iron supplement is probably not the best plan in the book, especially since trying to find something I can tolerate is a nightmare) The treatments have to make logical sense, too- as if you can ‘channel’ my energy over Skype, and then do muscle testing on yourself…’reading’ my body’s energy to determine what I’m allergic to. 😂 Right. I can’t eat ANYTHING without some level of reaction. I do have allergies, but I have sensitized to everything- giving me a long list of foods to avoid- that will not change a darn thing. Looking at my nutritional deficiencies, and slowly correcting them makes me feel and function better- but that’s no cure, it’s simply good management- informed, logical and indicated. It’s not just meds and supplements though. Meditation, for instance. It makes a ton of logical sense, it doesn’t have ugly side-effects, it’s been studied, and it isn’t new… A practice that shows up in almost all cultures, there’s a reason for that (I know you won’t take offence Jak, but some of your more conservative readers from the US may balk at the suggestion that, yes, Christianity has meditation- the Catholic Rosary? The Lord’s Prayer? Very meditative.)

    As with everything, there is a big difference between ‘OMG, my Mother’s sister’s best friend tried xyz, and she’s cured!’ and ‘I saw this. Looks interesting. You know anything about it?’ And even doctors have trouble confounding symptomatic improvement versus underlying improvement. (Another reason to like my new functional medicine doctor.)

    I don’t know how many times I have smiled at a complete stranger who has just been both terribly rude and endearingly kind, and told me that the key to curing everything was to drink Vinegar. Sigh…

    Karen

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