Monday, April 19, 2010

Yes, I am perky despite everything. Why? Because I'm alive.

It was brought to my attention recently that I'm always very chipper and don't talk a lot about having MS. I think it's important to share what it's really like for me living with it.

I am a naturally positive person, but, I also work very hard at being perky. Anyone could look at my life at the moment and feel sorry for me: single mum, small apartment, not much money, incurable disease. I focus my mind on having a good attitude and being in gratitude, because if I didn't, I know what would happen. I would go down a very negative path that would be very hard to come back from. I went down that path when Emily and Elliot were very young and it was horrible. That's another story for another time maybe.

I choose not to talk about my symptoms all the time, cos talking about them gives them power and turns me into a victim. I am not a victim nor will I ever be. Period. I am strong, I'm a Rugby midlands girl (think Trainspotting with an English accent, and ecstasy instead of heroin), we can take care of ourselves. Sure, I'm soft, gentle and very patient, but I will not be controlled by any disease or anyone. You can push and push and push me, but when push comes to shove, I will find my inner fire and will power and I will get what I need to survive with grace and integrity.

Yesterday, at Walk MS, I was reminded of the potential devastation of MS. Before the walk, a man talked about his wife who died last year from MS related complications. She was 52. He said she was the love of his life. We had a moment of silence for everyone who has died from MS related complications this last year.

That made me cry and makes me scared. I know we all die. But I don't want to die young or be disabled. I want to stay strong and healthy and continue to play with my kids.

Just because I don't talk about my symptoms all the time, doesn't mean that there aren't any. My right hand has numbness all the time and especially when I'm tired. Also when I'm tired my vision gets blurry in my right eye. When I go for a hike, after about 20 mins, my legs get wobbly. A couple of times recently I've had to walk back to the car holding onto my friend for support. I'm 36. I've watched that happen this last couple of years. So although I'm in remission, the disease is slowly, slowly progressing.

The NMSS talks about 'Living with MS'. That's just it. You live with it. It doesn't go away like a cold or a bug. Even when it's in remission, it's there all the time, you just get good at ignoring it or making decisions to not let it control you.

For example, last week my kids and I drove to LA to Disney Land. Not only was it a big deal cos it was us on our first vacation together as a family of three, but it was also massive doing that trip as someone with MS. It is vital for someone with MS to get lots of rest and keep the central nervous system calm. I probably 'shouldn't' have done it. (I'm not 'supposed' to do long haul flights, but I don't adhere to that either...jet lag - too shocking for the body and the air pressure causes the lesions in the brain to swell).

Before I went on the rides at Disney, I said a prayer asking God to take care of my spine and central nervous system. I chose to ride every ride even though I probably 'shouldn't' (jarring for spine). I was so grateful for the experience, cos, it did cross my mind that I don't know if I'll be well enough to do it again. (Note: it crossed my mind several times, but I honestly do not believe that will be true, I am strong and I will be running around Disney Land and the whole world for years and years to come. I quickly switched that thought around and thanked God for the experience of being there with my beautiful kids).

A few weeks ago, when I started back to work by day four I had a relapse. My symptoms were in full force - blurred vision, weakness and numbness in limbs, spasticity in right arm and hand, and fatigue. I knew what was going on and why, so I rested, made schedule changes and the following week was ok again.

It doesn't stop at making choices about what to do - like going on rides, flights, to bed late, back to work full-time - it relates to everything I ingest too. Every time I put anything in my body, I ask myself "is this good for me?" and I stop and evaluate how it could affect me - from something as small as an iced water (ice=bad, shocks digestive system) to a potato (too much sugar=bad for CNS). Also what and when to listen to music, watch tv etc - if I'm tired, I consciously decide whether to have music on to stimulate my CNS or to be quiet to let it rest etc.

When you see that I'm perky, know that I am, and know how hard I work to be in this place -constant thought monitoring, replacing negative thoughts with positive ones, prayer, yoga, diet, sleep, salt baths, reiki, vitamins.

When I was first diagnosed, they didn't know if it was an inoperable brain tumor or MS. For two weeks I lived wondering how long I would have with my kids. Now I have lived with MS for nine years and although I'm not looking death in the face, he's at the back of my mind - that's what motivates me to live so consciously. And, sometimes, like being at the walk yesterday and praying for everyone who have died from MS related illnesses, he's right here in front of me.

I have learned so much from living with this disease, mainly about the importance and fragility of life. About being fair and kind, and being the very best I can possibly be to all people at all times, including myself. Also about not worrying about the small stuff, like getting stressed out about breaking a plate or taking a wrong road. I've learned the importance of being happy and free, however that looks - a road trip to LA with my kids, or being alone in my teeny apartment when my kids are at their father's place.

So yes, I am perky despite everything. Why? Simple. Because I'm alive. And what an incredible gift life is. We get one chance at it. And I am making sure that I make the most of every single second.


LIVING IN GRATITUDE: here's what I do, you're welcome to copy it and add your own categories. It's super powerful at switching up your attitude and making you grateful for the small stuff in life. Then the bigger stuff seems less scary.

I also take a bunch of vitamins and supplements that help keep me balanced emotionally and physically. They help me sleep well, thus play well and keep a clear head. I'm not going to list them here cos would hate to get into some kind of trouble, but if you are interested in knowing what they are or seeing my traditional Tibetan physician, let me know.

Every morning I say a prayer asking for help and strength for a safe and positive day. I offer gratitude for my life, for my kids, parents, friends, teachers, career, abundance, nature, safety, strength and health. And, throughout the day, I work at catching myself going into negative thought patterns and consciously turn them into positive thoughts when I notice them.

Throughout the day, as often as I can, I say thank you for anything I can think to thank. The wind in the trees, the cosy sweater I'm wearing, the computer I'm typing on. Then, at the end of the day, when I'm falling asleep, I go through a mental thank you list for the day that's been, my safe travels, the phone call from my friend, the unexpected gift, the great parking spot.



  1. Jane, you continue to amaze and inspire me. I don't know what is to walk in your shoes, I can only imagine, but your daily practice of giving thanks is something that applies to everyone in every walk of life. I am so glad you are in my life because I needed this reminder of the good things in my life. I also need to work harder at being perky, and cheerful. When I do that with the kids, it works wonders.

    We spent a night at West Point Inn and it was unbelievable, you just want to wake up early and meditate in front of the amazing view. That was an incredible reminder of how lucky I am to live in this paradise.

    Can't wait to walk with you on Sunday.

  2. Loved this thoughtful, honest post.

  3. Hey sweetie,
    as long as I've known you, I don't think you've ever complained about what you're going through. Yes, tears have shed, but mostly from a place fear/frustration/process. Never from a place of self pity.
    You truly are inspiring. One that we can all look to as a role model. Personally, I can only pray that I have even a tiny bit of the strength, courage and insight that you have in times of uncertainty. I will always have you to look up to.
    thank you for opening up to the world.
    I love you!