From the thrill of booking the ski trip I never thought would happen again (see my blog B+ isn’t just my blood group …), I went through silent tortures of wondering if I had done the right thing.  Would it be a return to a sport I had loved or would I spend days watching others? And if I had to watch, would I be able to keep to my promise that I would smile even if all I could do was watch the others?  Even worse, was I going to end up hurt and really going backwards…?  So for 8 months I fought my inner demons to keep positive, stick to exercise routines, maintain my energy levels with diet and supplements and above all remind myself the most important factor would be to stay mindful and listen to my body and be honest about my capabilities.  So for anyone who read “B+ ” and awaited the follow up, here it is …..

I am euphoric, amazed and yes, proud of myself!   Not because I hurtled down steep slopes at speed (no, not this time!) but I did ski for 3 hours every day.  I kept control of my speed and direction, didn’t harm myself or others, but most importantly, I listened to myself, mind and body and ignored the little demon that wanted me to get on that chair lift one more time, or come down faster, or take the steeper option.  I skied when I felt good and stopped when I knew I had used up my energy, happy to sit in the winter sunshine of the piste restaurant watching other skiers and enjoy a hot chocolate with a dash of Cointreau thrown in – bliss!

Anyone who doesn’t understand invisible, energy draining illnesses, that can flare up and then almost disappear, can probably not understand how good I feel.  Many who don’t and can’t understand the nature of this condition, look at me and say, “You, how did YOU go skiing?!” it’s back to the disbelief factor, I can feel the unsaid words they think I must be lying, I can’t really feel that bad.  But I have never given in to that and can’t afford to have people like that in my life.  No one should feel they shouldn’t do their hair and make-up in case some (well-meaning?!) person says, “Well, you LOOK well” – hmmm am I not allowed to?  It actually helps me to feel better if I can make myself look better.  Do I have to spiral into deeper depression just so someone else believes me when I don’t feel good?  No, I mean more to me than that.

I may have been out on that glorious mountain, enjoying the thrill of being on the slopes, but there is always the unseen that I do try and hide.  I had an amazing memory making holiday with loved ones, that I feel so incredibly grateful for.  No-one but those loved ones, saw me hobble into our apartment, depleted of all my energy for the day, and crawl into an exhausted sleep, hopeful I would get another great day, but never to expect it.  I live not just day to day, but more hour to hour.  I start each day with my sands of energy time, and some days it is gone in a flash.  But instead of hating my illness (like I did in the beginning and confess it still creeps in when I am down) I try and appreciate all the times I do have.  Maybe I am more appreciative of what I have now, my good hours are a true blessing.

Hidden, invisible, disabilities have difficulties that others cannot comprehend.  You lose friends.  You withdraw from social life when you feel bad, only wanting to be out when you can show your good side.  This increases the view from others that you always seem OK, so why do you cancel, how can you do something one day and not another?  I don’t understand myself and can’t explain, there are no answers, I wish there were.  But I have stopped beating myself up about what I can’t do.  I have to accept my limitations and truly make the most of those lovely energy bursts with pain reduced to bearable.  In those times I am more than happy, I am deliriously happy.  Those who love and care for me share my good times with me. When I can’t do something, I hate letting anyone else down, but I let myself down even more if I push beyond my capabilities as then I will suffer longer.  Those who love and care, they let me do that.  They let me choose how to spend my energy without criticism or reprimand.  Those people who are still in my life, I love them more than ever for believing me.

Maybe that’s why going skiing with those very special people is what made it so wonderful.  I know the temptation for them is to help me, ask if I am OK, am I sure I can do that ….but they didn’t, and I thank them.  I said I would be honest and would not do anything that was too much, would not push too far, and in return they had to treat me as normal.  We didn’t mention my illness the whole holiday.  The fact that I would get up of a morning and take two maybe three hours until I was ready to go out, was never a problem.  Gentle warm up stretches based on my yoga workout, lots of water, healthy breakfast and an energy conserving walk.  Time on the slopes and then creep back to rest.  Never once did I feel a spoil sport for needing an early supper, alcohol free or at altitude it would drain me further.  Then to bed early, but with a smile of my face and happy dreams.  Dreams really can come true if we don’t ask for them to be unrealistic.

I guess healthy avid skiers would see my week as horrendous, but for me it was more than I hoped for.  So much so, that the deposit is paid for next year, and I will continue to be positive.  Disabilities don’t mean we have to give up, we adjust, and getting the balance right is an accomplishment that brings depression busting success.  Not every day can be a good day, is it for anyone?  But when your hard work pays off and you get to enjoy experiences that seemed out of reach, the result is truly euphoric.  Unfortunately that feeling doesn’t last, so I just keep working at being true to me, and I know the next great day is on its way ……