In My Skin

In My Skin

Colonies of ants are gnawing at my right foot. They spare the arch of the foot but avidly chew on the soft area under the toes and on the heel. My foot is burning. Then nothing along my leg. The ants are gone, so are all sensations. It feels empty, or rather numb like after a local dental anaesthetic. The thigh is the only parts of my body that seems to belong to me. But appearances are deceptive. It reacts but to an invisible force, shaken by spasms, regular, painful, constant… All these distorted feelings have inhabited me for so long. They are my constant reminder that something else has invaded my body. But despite the acute pain of the spasms, what I fear most is the numbness. I never particularly liked the shape of my body but I always enjoyed the sensations it gave me. The muscles that contract in an effort or lengthen and stretch to loosen tension, little by little. The warmth of a hand before it even touches me. The skin that shivers… All these beautiful sensations giving pleasure, establishing me in my own body and guiding me are slowing escaping me. I’m afraid to get lost. So as you slip out of a wetsuit, I unzip and take off my undesirable skin. I’m left alone. The invisible invader is gone, just for the length of a...
Low Energy = Feeling Down

Low Energy = Feeling Down

The equation governs the life of most people with MS. Right now, I know that I am in a great place. I know I am lucky: I have a wonderful partner, amazing friends and relatives, a job I love. But despite this knowledge, I feel down. Why? Because my energy level has run low. I usually pay very close attention, a bit like a stingy accountant: I am only allowed to give out energy if I have good reserves. However, over the last two months I tended to overspend. Flying to Amsterdam to shoot videos, then driving to Portugal for a one week yoga for MS retreat, back to the south of Spain to pack, driving through Spain and France to move to the South of England, unpacking and getting organised here…  I am now in the red! And although I am absolutely amazed at how swiftly everything went and feel blessed by all the opportunities I am given, I cannot fully enjoy it. The lower part of my body is numb. The upper part is aching. The back of my head aches as if someone just hit me with a baseball bat. So what do you do? Do you say “I’m happy” although inside you feel pretty low? Do you say “I’m down” although you know you are not really really down? I think the best is not to say anything but to RESTORE your energy! I only do restorative yoga at the moment. But I also enjoy reading, having a bath (not too hot otherwise it makes me tired) without feeling guilty! Ps: I am not sure...
Speaking of MS

Speaking of MS

I’ve been living with Veronique, my partner for the last two years who has MS and I have learnt so much about this unpredictable disease and what it is like for her. There’s lots of course she can’t share; her actual person experience of having MS for one thing. Veronique is a yoga teacher and dedicates a great deal of her time researching and developing a resource for other people with MS, mainly but not exclusively based on her experience using Yoga to treat the symptoms she experiences. One thing we spend many hours talking about is how to speak about MS and from some of the discussions I’ve seen on the internet, and some pretty forthright responses to Veronique’s work,  both positive and not so positive, my impression is that this is a very delicate area for many with MS. We have been particularly preoccupied with trying to find the right way to describe the potential of various treatment strategies for living with MS.  Do these strategies heal, cure, treat, tame, or overcome MS? Or do they help you recover from, live with, adapt to, accept, or even transcend MS? Just how high can we reasonably aim? Is it OK to say MS can be cured? Is it OK to say you can overcome MS? Or is it more accurate to say it can be tamed or controlled? Or maybe we should be learning to live with it, learning to accept we have MS and finding peace in our acceptance? Are people with MS, MS Survivors, MS Sufferers, MS’ers, MS Patients. Are they sick? Have  sickness, ill, chronically ill, disabled etc....
Get over it, really?

Get over it, really?

When I read this blog entry on Positive Living with MS, I contacted Penelope straight away to ask her if we could share it on our website. I think it gives rise to many interesting questions: How to support others? Where do we learn to support others? Were we supportive before being diagnosed ourselves? What can we do to make things change? What do YOU think? Feel free to comment on this post using the form below. Thanks and thank you to Penelope. Don’t forget to check her blog. It contains lots of interesting entries: http://positivelivingwithms.com/2014/09/17/get-over-it-really/ —————————————————————————————————————————————————————— Have you ever expressed a concern or a new symptom with someone and their response was “get over it”? I’ve always thought that to be a strange response. Get over what? Get over the pain? Get over the fear? Get over a chronic disease? What exactly am I to be getting over? How do you get over something that you live with on a day to day, minute by minute basis. It’s easy for someone to come along who isn’t living in your body and say “get over it” when they aren’t experiencing your challenges. A person doesn’t just get over Multiple Sclerosis…they live with it. I have no control over how my body is going to respond each day and the challenges I am going to face. One day I may feel great and the next day feel as if I’ve been hit by not just one, but two Mac trucks. I can’t control how my body is feeling even in the next hour, so how am I supposed to “get over...