Have you tried….?

When you’re ill, your loved ones just want you to get better.  Hell, you just want to get better.  For this reason anyone with a chronic illness will hear the following phrase a couple million times throughout the course of their life: “have you tried…….?” (add a range of drugs, supplements, diets or therapies to fill in the dots).

I’ve been ill for 20 years, so the answer to the question is usually always yes.   The novelty of being in my sick bed wore off in the summer of 1994 when I realized all my 26 year old mates were off out on the lash, and probably the pull, and I………well, wasn’t.  I don’t want to be sick and I’ve spent in excess of £25,000 ($39,000) over the years trying to get better.  Spoiler alert: I’m still sick.

When I hear the latest “have you tried…….” I have two choices:
1. Reply “no, I’ve sat on my lardy arse for two decades feeling sorry for myself and not even thought to try manuka honey/meditation/acupuncture” or
2. I have thanks and it made me so ill I ended up in A&E, followed by 3 months in bed.  Upside is I lost 9lbs in weight puking.
They’re not replies which go down well and there’s this awkward silence where neither party knows quite what to say next.

I feel guilty for the fact the lovely person’s suggestion has actually made me worse/hasn’t worked at all.  What I’d really like to say is: “gosh, no, hadn’t thought of ice cold baths I’ll give it a try”  then ring them up a week later to say “eureka, I’m cured!”  But being as though one of my diseases is genetic and currently incurable, and one of the others gives me life threatening anaphylaxis to anything which might alleviate a single one of my symptoms, I’m guessing the Eureka moment is never going to happen.

After all this time I still haven’t found a way of dealing well with the “have you tried……”question, particularly as the other person is only trying to help.

For anyone who’s interested, I thought I’d do a list of the things I have tried.  I can’t remember every single treatment, because in the early days I had no idea I was going to be sick for the rest of my life so didn’t keep notes, but here’s a few off the top of my head:

Drugs

  • Pain relief: Paracetomol, Ibuprofen, Codeine, Co-dydromol
  • Muscle relaxant: Robaxin
  • Sedatives for insomnia: Diazepam, Temazepam, Nitrazepam
  • Hypnotics for insomnia: Welldorm, Stillnoct, Zimovane
  • Antidepressants for insomnia and pain: Amytriptelene, Dothiepin, Surmontil, Prozac, Zispin (and several others – trust me, I’ve tried them all)
  • Tryptans for migraine
  • Propanalol for palpitations
  • Hormones for period pain
  • Mefanemic acid for period pain
  • Eye drops for dry eyes
  • Decongestants for sinusitis
  • Steroid inhalers for bronchitis
  • Oral steroids
  • Laxatives for “constipation”
  • Antibiotics
  • Anti-histamines

Supplements et al

  • GABA
  • Co-enzyme Q10
  • Bee propolis
  • Manuka honey
  • Kambucha tea
  • St John’s wort
  • Fish oils
  • Echinacea
  • L-carnitine
  • Sublingual B12
  • Raw olive oil
  • Magnesium
  • Vitamins C, D, E
  • Garlic
  • Increasing salt
  • Ginkgo biloba
  • Riboos tea
  • Lemon verbena tea
  • Peppermint oil capsules
  • Various Probiotics
  • L-Glutamine
  • Arnica
  • Liquorice root
  • Essential oils (bathing and as massage oils)

Diets

  • Anti-candida (sugar and fungi-free)
  • Gluten-free (three times)
  • Dairy-free (3 times)
  • Gluten-free & dairy-free (twice)
  • High fat
  • Low fat
  • High protein
  • Low carb
  • Low GI
  • Largely Raw
  • Plant based
  • Sprouted seeds and legumes
  • Low histamine

Therapies

  • Acupuncture/acupressure
  • Reflexology
  • Osteopathy
  • Cranial oseteopathy
  • Homeopathy
  • Lymphatic drainage
  • Hands on/faith healing
  • Chiropracty
  • Massage in various forms
  • Ice baths
  • Epsom salt baths
  • Electrical stimulation
  • Graded exercise
  • Yoga
  • Tai chi
  • Meditation
  • Neuro-linguistic programming
  • Mindfulness
  • TENS for pain relief
  • Physiotherapy

You’ll notice I’ve marked some of the items in maroon.  These are the things I’ve had a mast cell reaction to, sometimes so severe it’s required hospitilization or spending months in bed feeling like I was dying.  For the most part everything else has simply had no effect.

There are a handful of things which have helped, however:

  • Acupressure reflexology points: these are found on the feet, and if I do them myself, gently, they can sometimes help with nausea and feeling ‘wired’.
  • Acupuncture: although this eventually set off a mast cell reaction, I did have some needles successful placed in my knees which helped with severe knee pain.
  • Lemon verbena tea is really good for nausea.   Sadly, the company who used to make it here in the UK stopped and I can’t find it any more (I can’t risk a blended tea cos I might react to the other ingredients).
  • I don’t know what I’d do without my TENS machine for back pain.
  • I used to swear by Epsom salt baths for tense and spasmy muscles, but I started reacting to it so had to stop.  Ditto to Arnica massage balm by ‘Weleda’ which I used to love.
  • My low histamine diet has helped reactions after eating (for which I’m eternally grateful) but not much else.
  • H2 antihistamines (which I’m currently reacting to) help enormously with GERD.
  • The thing which has been my best friend throughout my decades of illness, however, is good old heat.  Warm baths, hot water bottles and heat pads.

Note these things have helped my symptoms slightly.  Nothing has had any effect on any of my underlying disease processes.  I have made a significant recovery from M.E. as detailed in this blog post, which involved strict pacing over a number years and a shed load of luck – not a magic pill or restricted diet in sight.  My EDS continues to deteriorate and my MCAD is only barely managed with diet and antihistamines.

It’s incredibly tempting when faced with the suffering of someone we care about to tell them about your husband’s cousin’s daughter’s friend who got better from ME by dancing round a May Pole during a full moon, but my advice would be not to particularly if your loved one has been sick for a long time.  I can guarantee they know more about their illness than you do and will have pursued every avenue to recovery.  If you want to help just tell them “that sucks” and give them a hug – they’ll truly appreciate your empathy and validation of their suffering.

 

 

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7 thoughts on “Have you tried….?

  1. Eustice The Sheep

    I’m posting without evil intention, but I find myself wanting to share information. I take a MAST cell stabilizer, generic name is cromolyn sodium. Perhaps you’re already familiar with it? I had to work up to a full dose. It took me a long time, but even the half dose had great effect. E-mail me if you like 😉

    Liked by 1 person

    Reply
  2. kneillbc

    Your blog made me laugh and cringe at the same time. This is something that I am guilty of, and something that bothers me sometimes too. I think I may have a different ‘bar’ when it comes to accepting suggestions- most likely because I have only been sick for 3 years, and I’m still trying to figure out what works.
    When I am giving people information, I try very hard to do just that- give information rather than advice. I will try to say things like “This worked for me, I’m sure you’ve considered it, but I thought I’d mention it, because you never know.” Because here’s the thing- what is working for me I didn’t learn from my doctor, or from reading a book, it was through family and friends, and reading personal experiences like yours.
    For me, the frustration begins not when people say “Have you tried…”, but when they say “You should do….”. The first I see as genuine concern and thoughtfulness, the latter- nobody had better dare tell me what I should and shouldn’t do. My best friends and my husband are allowed to give me that type of advice- as long as they know that if I say ‘no thanks’, they shut up about it. Of course, when the same information is repeated umpteen times, it starts to feel like an implicit “You should. Why haven’t you yet?”
    And what the hell is Neurologist-Linguistic programming? If I just read the words, it sounds like ‘brainwashing’…
    Cheers,
    Karen

    PS: Eustice the Sheep- where do you live? I’ve been trying to get my doctors to prescribe me Cromolyn for almost a year, and they don’t want to…trying to father as much info as I can. TIA

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  3. bertieandme Post author

    You’ve come to the crux of the issue Karen when you say you’ve only been ill 3 years. In my early days I was like a sponge for information and tried every single suggestion. After about year number 10 though I just wanted to kick anyone who asked “have you tried……” 😀

    Liked by 2 people

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    1. bertieandme Post author

      We’re all the same when we first get sick – we try everything. We know there’s no cure for ME cos if there were none of us would be sick, so the whole thing is futile, but it’s just part of the process. Eventually you reach acceptance and stop trying anything, but it takes a long time x

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