Climbing the steep mountain of recovery is hard work,
But the view from the summit is spectacular,
Rewarding and worth every step.
But don’t forget to rest and reflect along the way,
Every vantage point offers its own wonderful sights
Not just on the horizon but in everything around you.
Keep going, enjoy every step of achievement,
Pain is a message to our body, listen to its limits,
Savour your accomplishment.
You are not alone,
Your family and friends, both in body and spirit, travel with you,
Lovingly holding your hand.
Don’t underestimate the smallest improvements,
Be mindful of the tiniest building blocks, so easily missed.
Look back along the route travelled and the progress becomes clearer.
The body is AMAZING, the brain POWERFUL,
YOU are amazing.
Trust and believe in your power within and ability to heal….
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 ……
In physics, opposites attract and like repel. Does this apply in biology?
I am no scientist, but I remember during my childhood loving to play with magnets and the more powerful the attraction, the more thrilled I was. The “positively” charged ion would draw the “negative” charged ion forcefully, whereas a like “positive” would be pushed powerfully away.
In relationships it is commonly heard; opposites attract. I know I am drawn to those who are different to me. I am intrigued, fascinated, interested to learn more. However, I am comfortable, relaxed, complete when sharing like ideas and conversations with others of a similar nature to myself.
Then there are the opposites in nature that I consider to be cruel or unkind, and I certainly have no attraction to this! In nature, I am positively drawn to what I consider to be positive attributes, leading me to believe we are drawn to positive (another commonly stated fact).
I try and stay positive; the charge is not always at full strength but when I feel the negativity I boost my effort.
I don’t want to repel others by being negative. Thinking on my depressed and low phases however, I seem to have drawn other depressed people to me; but I didn’t want to attract that I needed positivity. However, the positive seemed drained by me and pulled away! I lost friends.
I can now experience such feel good times, they amaze even me! I believe improvement is possible, positive thoughts work. When a friend is down, I want to inspire and share with them a little of my euphoria to say, if I can get over my obstacles so can they. I won’t be the friend that turns away. But this is where sometimes my positivity seems to work against me. I perceive they feel their pain (emotional or physical) must be worse than mine, or I couldn’t possibly be as I am. I back off (a little), at this moment they do feel worse than me, I got through it. They don’t want to hear it, not yet. So can we be too positive for others? Can we seem unreal? Do we make ourselves something enviable instead of inspirational?
So, my final thought is, do we need to acquire an understanding of balance? To be mindful of timing? We need to experience sadness to appreciate happiness. We are an amalgamation of positive and negative emotions and traits. Learning to allow ourselves to be both, have empathy for others in their negative and take pleasure in their positive. Acknowledge we can be attracted to negative, positive and indeed neutral for our own individual reasons.
We, as humans, are not an exact science – we are an “oxymoron” (I love that word)! Enjoy a balanced day …..
Could grief for the loss of one we love be greater (if that is at all possible) than the grief we suffer over our loss from death? Anyone who hasn’t experienced this form of loss, but is suffering from torturous grief, will probably want to scream “No” but let me expand. If someone dies, they had no choice (unless suicide of course but even then there is an argument as to the choice they feel they have).
My dad walked out of the door just before my 8th Christmas. I vaguely recall being told it was nothing to do with me. He had fallen out of love with my mum, not me. I would be OK. Would I? I watched my mum shrink to skeletal proportions, whilst I piled on the pounds. I heard her heartbroken sobs, whilst I hid silent and confused in my bed, feigning sleep. I became a very “good girl” fearing it was my naughtiness that had driven my dad away. My fault my mum was in pain, maybe I could make it better if I was “gooder”! I missed my dad so much, but I missed my mum too. Not only that but I missed Santa; apparently even he didn’t think I was very good as he didn’t leave me many presents anymore! I didn’t know then that mum was financially as well as emotionally struggling. My world had turned upside down and I grieved the loss of everything.
At first, he took me out for a few hours every Saturday. We would walk along the seafront together (but he didn’t hold my hand). He would give me 2p coins to put in the slot machines, or watch me on one of the rides – but he never did these things with me. He would buy me ice-cream, donuts, candyfloss, piling more pounds onto my young body (body image and weight issues ever since). I didn’t want to refuse these things, they were nice and seemed to make dad happy buying them. I had started to want to please others more than myself. When he dropped me back home I would kiss him good-bye and say, “I love you daddy”, where I waited for the usual answer of, “I love you too”. He stopped saying it, and very soon so did I. One day he picked me up and there was a strange woman in the car “Meet my wife” he said.
Rejected. Jealous. Scared. I still saw him every Saturday but now he took me to his new home and his new life. I didn’t fit. I continued to try to please and didn’t complain. As I got older friends started going out Saturdays but I couldn’t go. “I have to see my dad” I said. I was scared to tell dad I had invites elsewhere, I thought it would hurt him. I also feared if I didn’t see him he would forget me. So I, in turn, rejected friends losing that time of building those important peer relationships.
At 18, I left college, got a job, left home – I needed to run and get away from my prison of pleasing others. I was depressed and running but didn’t know that then. My dad didn’t try to contact me or even find where I had moved. I felt I had given him all those Saturdays, and actually when he left mum he had wanted to leave me as well after all. I had been right. He felt duty bound to see me, nothing more.
I grieved over the years for the loss of my dad. He was basically dead to me as I didn’t know him, didn’t see him. I began to wish he was. Immediate tremendous guilt. I really was a horrible person. I made myself stop those thoughts, I feared my thoughts to be so powerful I would make it happen and I didn’t really want that. If he died there was no second chance! Then I tried to forgive him. I admitted to myself I missed him. I loved him, he was my dad, surely he did love me too? So I contacted him.
He acted like there had been no separation over the years, seemed pleased enough to see me. Never one for much conversation, he could avoid and blankly refuse to engage, just listen to others with the odd nod. Without words, I still felt his disapproval. If he didn’t nod, I knew it was a topic he didn’t appreciate and I would change the subject. I also still believed he did love me, I made every excuse for him I could find. Then I met someone and planned to marry. Of course, being the dutiful daughter I asked my dad to give me away. I thought it was an honour, but he hated it. He didn’t have to say it – but I knew. Sadly, my step-dad who loved me so much, understood why I had to ask my paternal dad, and he stepped back and watched.
When I had my daughter, I thought maybe a baby would help us connect again. Maybe I deluded myself, it was what I wanted. He saw her at a week old, then 3 months, then a year. I stopped calling him, waited for him to contact me. Gone again. Rejected again. Grief again. This time not just for me but for my daughter. I strengthened my resolve to not let him hurt her like he hurt me so I stopped calling. I tried not to miss him but I still did. I hurt for the loss of what I craved from my dad. But a stubborn streak developed in me and I would not be the one to contact him first. A negative trait I apparently share with my dad.
Ironically, my daughter turned 8 (the age dad left me) and I was very ill in hospital with pneumonia. My husband warned my daughter I could die (big arguments over that one) and she thought I was so ill because she had been naughty. I didn’t see at the time history repeating itself in her development even if it was for different reasons. Bless her. She felt her “missing grandad” would want to know his daughter was ill, got his address from my address book (all paperwork then) and wrote him a letter. He turned up. He did love me! I would forgive him anything. He was in our life for the next 3 years and it was the best it had ever been. We had holidays. We had fun. We had time. I been right after all. Albeit delayed, but my baby had brought us together and she adored him!
More my father’s daughter than I could know…. I ended MY marriage. My ex knew the emotions I had gone through and we talked and worked hard to keep her life as balanced as we could. But my dad was livid! How could I do that to his grand-daughter? How dare he, he should understand not criticise. When I met someone new, it was the last straw, he didn’t want to know me. I knew it was me he didn’t want to see, but of course my daughter lost a grandad too! More grief, more suffering, more loss.
My daughter, history repeating yet again, did the same as me. When she was old enough and had learnt to drive she turned up on his doorstep. She was angry with me, telling me he was so pleased to see her, so sad to have lost us. He was going to call her and she told me she would see him even if I wouldn’t. He never called. She grieves a living grandad.
So, as awful and as guilty as I feel for saying this, IF he had died when I was 8, I would have cried and grieved. I would still be sad, but maybe I would recall the happy times. Instead I have had years of grief with alternate hope and rejection. When we lose , but they are still somewhere out there, the burden of rejection, guilt, self-doubt and loss can be overwhelming. I am sure it’s the basis of my lifetime’s underlying depression which I have to actively manage every day.
With the development of social media, 2 years ago, I was able to find him on facebook. Did he want to be found? Yep, you guessed it, I couldn’t not try, I sent a message on his birthday, “Dear Dad, I know we are no longer in contact but I want you to know I think of you with fondness. I remember the happy times and I wish you a Happy Birthday” – almost what I would put on his headstone. I grieve. There was no reply. I also know the day he does die, I will grieve yet again.
Be Positive is my life’s mantra. Well it is now that I have turned 50 something and want to make the very utmost of all I can get from this life. Don’t get me wrong, it’s not easy, and no I am not some super woman who has a perfect life and all working out as planned. In fact my life has been full of set backs and there will be more, of that I have no doubt.
I also contradict myself a lot, and this may not make any sense to anyone who doesn’t experience battles within, but to stay positive I daily fight my demons. I can be excited and buoyed up one moment only to find myself depressed and subdued the next, so if I put my rose-tinted glasses on, forgive me, but this seems to be my way of finding my positivity.
So, if you are still reading, I would like to share a rather impulsive trip I have made and why….
One of the most exhilarating holidays I have ever taken was to go skiing. It surprised me to be honest, as I was never one for exercise per se and loved nothing more than my two week holiday in the sun, with a daily swim being plenty enough for me! But, fate being what it is, after many years of my dad not being part of my life, he appeared at my door one day totally out of the blue. To make up for lost years, and in an effort to be reacquainted, he and his new wife wanted to treat my daughter and myself to a holiday – and that was to take us away to the beautiful ski resort of Montgenèvre. The breath-taking beauty of the snow covered mountains together with the nervous-excitement of the sport was addictive. It was also a perfect bonding experience for my dad and I to find we had something in common – we both loved this adrenaline sport. I have been fortunate to have experienced 3 ski holidays but the last time was over 14 years ago now.
Life being what it is, skiing was removed from my agenda.
I met my husband 12 years ago who introduced me to another adrenaline sport – motorbikes! I loved donning the leathers and riding pillion, going to British Superbikes and MotoGP – until that wasn’t enough and I did my CBT, passed my test and got my own R6 – yes, me at age 40 an adrenaline junkie! Even did track days!
Skiing and motorbiking to me felt similar, not just in the nervous-excitement and adrenaline, but the feel of the air against you and the very movement itself. We talked about going skiing but just never booked it. It’s one of my regrets. I would have loved to have shared this experience with him.
Then my whole life seemed to come to a halt as I suffered from unexplained chronic pain. Finally diagnosed 6 years ago with a chronic pain disability I sunk into depression. I grieved for all the activities I was no longer able to do – from a lay in the sun girl I had transformed into loving an active lifestyle, but never a gym bunny or workout person. The pain became so bad I had to give up my job in the City and move from our house to a bungalow as I could barely crawl up the stairs!
Countless hospital appointments, MRI’s, pain management, mindfulness the list goes on, not to be discussed here, but I had a sudden mind change where I did not want to let pain dictate my life. I didn’t want to keep grieving for what I couldn’t do anymore. I always kept a diary, re-read my entries, and didn’t like hearing my pessimistic voice. Researching my options, I finally came out of denial and accepted life had to change. I joined a yoga class, gentle and relaxing and met some wonderful people none of whom had to feel sorry for me.
Amazingly, although I wasn’t looking for yoga to “make me better”, I was just looking for something that I was capable of, as the weeks went by I started to feel better. Not just physically but mentally too. I still have bad days but I appreciate the good days so much more. I know as long as I listen to my body and don’t push it beyond it’s capabilities for any one day, I can do more than I ever thought possible.
So, back to the skiing. Well, my daughter said she and her partner wanted to go skiing for her birthday next year. They caught me on one of my rose-tinted glasses I can do anything kind of days. So no surprise I said to my husband “shall we go too?” I always regretted not sharing this experience with him and I am now so excited to be returning to the ski slopes.
I know I will ache, and I know I mustn’t over exert myself. Maybe just an hour a day for me, maybe I will only manage an hour on the first day and be so creased up I won’t be able to do anymore. Who knows? But I am going to “B+” I will continue with my strengthening exercises, I will have some “snowdome” trips and even if my skiing is only an hour, I will love that hour, as it will be more than nothing. I will love the atmosphere. I will enjoy being with my family. If need be I will smile and watch the others, and maybe just use my time to write in a beautiful inspiring setting. Fool hardy or opportunity grasper, maybe I am a bit of both – as always, but I believe we only regret the chances we don’t take. If you want to know the outcome, my adventure will be titled “Slippery Slopes ….”
Brazanne Muse 