My Body & I: A New Chapter

15 Jan
Purple lotus beauty

ยฉ Jess Bruce 2016

My body and I are in a new relationship. We have started a new chapter. We’re in the early stage of just getting to know each other, learning each other’s ways. I would love to say that it has been all sunshine and roses and love at first sight but that would be a lie. And I don’t want to sugar coat it. I feel it may be a slow burn affair, we’re not quite holding hands yet; rather we are curiously prodding each other with a long stick. We are still quite wary of one another at this early stage but I am confident, my body is the the one for me, and slowly love and admiration will blossom and bloom.

What am I talking about? A good question.

Over the last few months I have gradually weaned myself off all my ME/CFS medication. [Pause for round of applause from adoring fans ๐Ÿ™‚ ]

I will state upfront bold and simply right now that I do not recommend you undertake any changes in medication without seeking medical advice first. ย I reduced my medicationย incrementally and veryย slowly under the strict advice of my doctors. I am not a doctor and do not offer medical advice. I merely share my experience for your interest but if you’re consideringย medication changes, ****speak to your doctor first****.ย 

ยฉ Jess Bruce 2016

ยฉ Jess Bruce 2016

Slightly frenetic medical legal disclaimer jargon aside, returning to the topic at hand, back in September 2015, I was taking 5 medically prescribed drugs to control my ME/CFS symptoms. Having come such a long way in my recovery over the last few years, and with our wedding done and our honeymoon not quite on the horizon, it was a good time to start reducing my dependency on these drugs. I wanted to see how well I actually am now. I feared the medication may be masking symptoms or conversely I hoped that in fact without the medication I would be fine, that I was actually a lot better, meaning that the medication was essentially redundant and I could move into a more natural drug free phase of health and healing.

Although it wasn’t a walk in the park, I am happy to report that the latter turned out to be my new reality. Or at least initially. The months up until Christmas when I gradually weaned myself off the first four medications from my armour went amazingly smoothly. Yes there were some bumps in the road. Yes there were some initial withdrawal side effects but overall the ME/CFS symptoms that I began taking the meds for did not rear their ugly heads. The crippling myalgia did not resurface at all – I am still, touch wood, just about pain free, woohooo! – the head-spinning dizziness did not reappear and there was no discernible prolonged increase in the exhausting fatigue. My erratic digestion and migraines both remained steadily neutral; no better no worse.

So far so good.

And then came the new year and it was time to remove the big one. My sleep remedy, magic melatonin. Ever since I was a child I had struggled with falling asleep. I would lay awake for hours after lights out, tossing and turning, unable to drift off. So when my doctor prescribed me melatonin back in 2012 it literally was a dream come true. Getting to sleep was no longer a chore. I stopped dreading going to bed. The stress I had associated with sleep was removed as I drifted off easily within minutes of my head hitting the pillow and I would wake refreshed and revived.

ยฉ Jess Bruce 2016

ยฉ Jess Bruce 2016

To be honest melatonin was the one medication I was dreading stopping. But I don’t like the idea of my body being dependent on a synthetic chemical, albeit a hormonal supplement. So having gradually reduced my melatonin dose, on the 2nd of January I went to bed alone, without my friend of the last 4 years. And that is where the trouble really started. My dread was realised. I was expecting it to be bad and so it has been, mind over matter or rather mind determining matter so to speak. I’m back to staring at the ceiling for a good couple of hours after lights out, tossing and turning, getting more and more frustrated because I am so so tired, eyes won’t stay open reading a book in bed and yet for some inexplicable reason I can’t actually flipping fall asleep. Once I turn the light off and lay down, PING, my overactive mind is in overdrive and I’m wide WIDE awake in a big messy wired yet exhausted kind of way annoying the hell out of hubby with my sighing and tossing and turning. I fear the spare room is calling me.

And given sleep is so critical to getting through the day, for everyone, but especially ME/CFS recovering bodies, life hasn’t been pretty these last few weeks. Exhausted. Emotional. Anxious. Overwhelmed. Tired. Irritable. Stuck. Yuck. The only plus side, thanks to being so tired and not really able to function, I have watched a lot of reruns of the West Wing which makes me very happy ๐Ÿ™‚

Yep my body and I are in a new relationship. And definitely still wary of one another in our new found landscape. We’re still figuring things out. It’s definitely not a truly madly deeply thing yet. More just truly maddening. We are still learning to trust one another. But it will become everlasting love, I’m sure of it. It will it will IT WILL. I’m going to beat it, squash it, thrash it in to submission to ensure that my body agrees. I will persevere and I will win. Fighting talk hey?

In fact that’s the opposite of what I need to do but I’ll save that for my next post. Until then, sleep well ๐Ÿ™‚

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22 Responses to “My Body & I: A New Chapter”

  1. hannalifecoaching January 15, 2016 at 9:33 am #

    Thanks for your post Jess! That is awesome that you are managing without prescription drugs. I came off the pregabilin I was on for a year, for ME/CFS and mainly the fibro…I was only on a low dose and refused to take in the mornings, so I just took to help me sleep at night with the pain etc It’s been 5 months off for me and I was doing well, as in all honesty not one drug I’ve tried actually ever gave me stability getting sleep so I figured better without any if they aren’t doing much! In the last few weeks however I’ve had to return to taking different drugs to get some bloody sleep! If it’s not a little tampazapam, then it’s some Phenergan or even just the Ibruprofen can help somehow. Don’t beat yourself up about the melatonin, at least it’s natural, and you are real lucky it worked for you, as it hasn’t for me. Sometimes it did but other times, especially like last night, I was awake all night long!! After a long time mapping out my body’s symptoms and cycles, my thinking is mine is largely endocrine related. I simply don’t sleep well in the follicular phase and migraines are chronic. I’ve visited a specialist doc and I’m finally going on some DHEA and Progesterone after some results showed low levels. Like you mentioned, it can be tough to know what our body needs. I’m better at accepting little sleep now but there is always a reason for everything. And if it’s not psychological then there is still physiological imbalances to uncover. Often it’s a bit of both! Good on you for trying new things and goodluck with the natural way. Many thanks, Hanna

    • myjourneythrume January 15, 2016 at 3:04 pm #

      Thanks so much for reading and commenting Hanna. I totally sympathize with your sleep issues and hope that the DHEA and progesterone works for you – keep me posted, I’d be interested to know how you get on ๐Ÿ˜Š mapping out symptoms and watching cycles and basically getting to know our own body is so valuable. Thank you so much for your words of support and encouragement ๐Ÿ˜Š

  2. thehomeschoolingdoctor January 15, 2016 at 2:20 pm #

    Wow! That’s great except for the insomnia. A little last road block and diversion that you will eventually navigate together with your body (as I consider the brain a part of the body) one way or another. Thinking of you.

    Terri

    • myjourneythrume January 15, 2016 at 3:00 pm #

      Thanks Terri! Yes I have to focus on the positive progress I’ve made and not let this last bump get me down. Thank you for your words of encouragement ๐Ÿ˜Š

      • thehomeschoolingdoctor January 16, 2016 at 8:09 pm #

        Oh, man! You can do this. It is a bump. Bumps challenge us to keep going and learning about ourselves. You inspire me to keep trying to feel my best and to keep trying new things and to be open. You’ve got this. I’ve been reading this guy Sarno and thinking of you the whole darn time.

      • myjourneythrume January 18, 2016 at 8:18 pm #

        Oh thank you Terri, that means the world to me. I just read your post about Sarno, I’m going to look him up, thanks for heads up about him. Keep me posted on how you go with it. You inspire me, let’s keep going, we can do this ๐Ÿ˜Š

      • thehomeschoolingdoctor January 18, 2016 at 10:31 pm #

        I’ll keep you posted! I mean, I can’t get visions of your wedding cake out of my mind! Eggs, I’ll beat you yet! ๐Ÿ™‚

      • myjourneythrume January 19, 2016 at 8:26 am #

        Haha! Well if I managed to reintroduce eggs I’m sure you can too ๐Ÿ™‚ Good Luck!

  3. Damon Lifestyle Therapy January 16, 2016 at 6:11 am #

    Wow! You definitely have applause from this adoring fan! You are so brave to want and go through with weaning off your medications. I am glad that you are being very kind and patient with your body and mind. Have you ever considered working with an occupational therapist? They can help you figure out new ways to return to your meaningful occupations (meaningful activities, from basic dressing/grooming/bathing, to work tasks, household tasks, homemaking tasks, etc.). In terms of sleep, are you currently following a bedtime routine? Not just the same sleep/wake time everyday, but activities that help you wind down to get ready for sleep, such as brushing your teeth, taking a hot shower, slowly applying lotion to your body, deep breathing in bed? I can’t wait to read more about your progress, and thank you for sharing!

    • myjourneythrume January 18, 2016 at 8:28 pm #

      Thank you! Your comment and applause made me smile a lot ๐Ÿ˜Š I used an occupational therapist to set me up with a paced routine and it helped me a lot when I was at my most ill a few years ago. Now I can be more flexible with my day and energy use but it’s a good reminder to go back to my basics at times when I’m struggling more such as now, so thank you for taking the time to comment and being a valuable reminder. I have set up a proper bed time routine these last few weeks with bedtime yoga, bath, meditation etc I’ve been planning to write a post on it. Thank you again for reading and taking the time to comment, it helps a lot ๐Ÿ˜Š

      • Damon Lifestyle Therapy January 19, 2016 at 1:39 am #

        Hi, Jess! Woohoo! I’m so happy to hear that! Yes, I would love to see that post. ๐Ÿ™‚ In the meantime, be sure to schedule in some play time to reduce burnout from all the work you are doing for yourself. http://damonlifestyletherapy.com/blogposts/schedule-time-for-play Wishing you all the best!

      • myjourneythrume January 20, 2016 at 10:38 am #

        This is such an important point! And something so easily forgotten. Just been perusing your website, such a lot of helpful info ๐Ÿ™‚

      • Damon Lifestyle Therapy January 21, 2016 at 6:38 pm #

        Thank you for checking it out! Please let me know if there is anything you would like to know more about from a healthcare professional’s perspective, and I’ll be sure to write about it!

  4. babycrow January 16, 2016 at 3:23 pm #

    thanks for sharing this. a really interesting read. I was never given any meds at all for ME, but even so I find I’m needing to create a new relationship with my body as it gets well. I’m learning what exercised muscles feel like compared to ME ones (they both hurt, but differently) and what ‘normal tiredness’ feels like.. Yoga helps me with this relationship. kind of exciting — but only on the good days perhaps! Keep listening to what you need and keep getting well, little by little.

    • myjourneythrume January 16, 2016 at 6:55 pm #

      I know exactly what you mean about ‘normal’ tiredness and normal muscle pain. It’s such a learning curve. I totally agree that yoga helps too, I know my body so much better thanks to my practice. And it makes me more comfortable and tolerant of it. The meds have helped me so much over the last few years but so glad to now be able to go it alone. Thanks so much for reading and commenting. Hope today is a good day for you ๐Ÿ˜Š

  5. Jackie January 16, 2016 at 8:11 pm #

    You are brave! There is no point in someone needlessly suffering, but if you mostly feel the same with and without meds, then I think it is preferable to be without. Good luck as you navigate this last hurdle.

    • myjourneythrume January 18, 2016 at 8:20 pm #

      Thank you Jackie. Brave or stupid…. ๐Ÿ˜Š I hope you are doing okay and enjoying married life too!

  6. Karen January 18, 2016 at 5:02 pm #

    Hi Jess,
    Just stumbled upon your blog whilst searching the web about Tiger Balm.
    Just wondering if you’ve looked into homemade probiotics such as Kefir water, kombucha and fermented vegetables? I’ve had M.E since the mid 80’s and its been a rollercoaster ride of illness and self discovery, I came across homemade probiotics whilst looking into helpping my young sons allergies and chronic stomach problems, the results where amazing and much quicker than I ever expected, he’s off all his meds now and I’m able to reintroduce egg (used to need epi pen for egg) and dairy into his diet. I started adding probiotics into my diet to help my gut flora as well and noticed improvement, my healing has taken a lot longger than my sons but I expect that’s because I’ve been ill for so long. I now feel I have my life back, much better sleep patterns and no more foggy heads, yay! I also practice Tai Chi and Qigong when I can. So there’s definitely light at the end of the dark tunnel of M.E. Good luck on your journey of recovery and I hope the information about probiotics is helpful ๐Ÿ˜Š

    • myjourneythrume January 18, 2016 at 8:35 pm #

      Hi Karen,
      I love tiger balm! It helps me with headaches and muscle pain so much, really recommend it.
      The progress you’ve made with your son sounds amazing.
      I’ve played with basic probiotics in the past but not consistently and not homemade, it’s something I should go back to. Do you have recipes you’d recommend? I would totally agree about the light, I am a lot closer to it now than I was a few years ago, I need to remember that at the moment when things have taken a bit of a backward step. I practice yoga and meditation and find they help loads, Tai Chi and Qigong are on my to try list.
      Thanks so much for reading and commenting
      Jess

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