about me and my focus

Here’s me in my youtube debut. A beautifully edited piece of work from a filmmaker friend, Toby (more of his work can be found here). He managed to cut an hour’s worth of chat into a meaningful collection of… me! I wish he could edit my words every day.

With my first bout of optic neuritis, I was diagnosed with Multiple Sclerosis at the end of 1993  some weeks before my 21st birthday. I have been using a variety of alternative treatments ever since to address some of the symptoms that come with this particular long term health challenge. On this blog I’ve been trying to share some of what I’ve found out on my relatively pharma free journey.

There are some things I’ve been doing for 10 years and more

  • gluten and dairy free
  • my own modified version of Pilates
  • getting good sleep (aim for bed before 10 and blackout material over the curtains)

Things I’ve found worth doing to a greater and lesser extent:

  • Lots of fresh veg including various sprouted seeds (alfalfa, sunflower, pumpkin, hemp and most recently broccoli and beetroot seeds)
  • homemade sauerkraut.
  • Trying to remove all sugar to avoid an inbalance of gut bacteria especially an overgrowth of yeasts (specifically candida in the gut)*
  • Very little red meat,
  • Chicken and fish more often,
  • HCL at most meals to help digestion (for some people correcting stomach acid levels can reduce fatigue as extra energy is no longer spent digesting food and protein in food can get broken down into amino acids and provide more energy).

I’d almost forgotten exercise! Muscle atrophy from inactivity is something we can have some control over even if, with a chronic condition, various actions seem to be going on in our body beyond our control. I’ve tried a variety of alternative treatments, some of which I feel are worth continuing even if they aren’t a cure for MS.

  • A cold blast at the end of showers for over 10 years (this gives a ‘hello!’ to my brain from all my edges). I believe reminding our brains that some of our numb bits still exist justifies this particular shock to the system! At this point we can also mention the autonomic nudge it can bring (autonomic dysfunction could be the reason for a number of common symptoms amongst various conditions)
  • Inclined Bed Therapy IBT for past 6 years which, I’m pretty sure has helped reduce the worst examples of my poor circulation.
  • HBOT/HDOT (hyperbaric/high density oxygen therapy) breathing pure oxygen at pressure addresses slowed bloodflow by saturating the tissues of the body with with a greater concentration of oxygen molecules.
  • LDN (low dose naltrexone) which can in theory, knock the edges off the disease. Like many therapies I notice its absence more than its presence.
  • I got myself treated for CCSVI in NYC, 2012 after a valve on the jugular vein was found to be stuck in a closed position. This meant my blood’s return to the heart was along minor B roads and dirt tracks rather than motorways or freeways. My brain fog and heat intolerance have been hugely reduced.
  • Feldenkrais Method  which for an hour and a half reminds my brain how it can still do the things it stops doing. This adds up and cumulatively keeps me putting one foot in front of the other.
  • Occasional Shiatsu and/or Acupuncture – my body feels calmer and more in balance after treatments (they can both help with pain aswell).
  • Mindfulness Based Stress Reduction MBSR (see above).
  • Exercise bike, Pilates, rebounder, knee lifts (on good days) while holding onto something. Any sort of movement at all can only be a good thing (we were designed to move).

I consider these lifestyle and nutritional adjustments to be coping mechanisms for dealing with the effects of this diagnosis. I think we can be the best of ourselves through contact with and support from other human beings and my husband has encouraged my exploration of all these strategies. I’m glad we seem to make one another happy. I believe caring for ourselves is more possible when we are open to trying lots of options, that ultimately might or might not ‘cure’ us but the trying is beneficial.

I look forward to hearing people’s thoughts on these coping mechanisms and what strategies you may be trying that focus on feeling better. We can all try and make our lives feel a little better!