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 ……
It makes me smile. In the UK we are renowned for our capability to strike up a conversation about the weather with anyone and everyone who’s willing (and admittedly unwilling or unsuspectingly caught at times).
In truth it’s not a “real” conversation as we are just stating facts and agreeing with each other. With our tongue in cheek humour, we laugh at ourselves – if you visit our country and you can join in this talk, welcome to our way.
To the untrained ear, it may sound like we are always moaning; I believe the Aussies refer to us as ‘Whinging Poms’ (smile).
Yes, our recent hot weather has been amazing – we love the sun (Let’s face it to be guaranteed hot weather most of us who can will travel abroad.) We express to all and sundry how lovely it is but ‘just a little too hot’…
The sea breeze near the coast freshen the air – we love the breeze, but it prevents us from putting up our sun umbrellas as they get blown away. So we say how lovely it is but ‘just a little too strong’…
The warm summer nights arrive, we love socialising outdoors with friends and family, no need for a jumper, our idea of holiday weather, how lovely it is but ‘a little too warm indoors’…
The rain we have been waiting for comes. (A little aside note here, my husband has just returned from shopping as I am typing, his first words to me on this, our first rain since the heatwave is, “it’s not coming down quite as heavy but still coming down” – he doesn’t know the topic of my blog and rather bemused by my laughter – I have had to take a minute out to explain!). We are so lucky not have to worry about drought, a welcome drenching for our scorched earth, it’s lovely but ‘does it have to rain ALL day’…
In the winter, before Christmas time, we as adults get our kids all excited at the thought of fun in the snow. After a few days, unequipped to cope with snow, we want it to melt, it’s lovely but “it’s too slippery now, can’t go out’…
Do you get the gist? We really are so fortunate to experience such varied weather. It is the very extremes that make it such a talking point.
Our standard homes are not fitted with air-conditioning, but for such a short time do we really need it? Our heating is, in truth, far more necessary. Our carpeted floors are appreciated in the winter, but tiles are so wonderfully cool in the heat. Opting for summer time flooring and adding rugs in winter is maybe the option!
I feel that our ever changing seasons are like our every changing life. We enjoy the good, deal with difficulties and look ahead to repeats of the things we love. How wonderful to not have the chance to get bored. How appreciative we are of what makes us feel good when we can balance it against what isn’t so good.
So, next time someone ‘passes the time of day’ with you by making a comment on the weather, try and see it as complement, you obviously are being seen as person deserving of their time. We Brits are being friendly when we talk about the weather, you will invariably see us smile on parting.
I see it as a metaphor for life, if I say “what a lovely day” I am feeling good and want to share that with you and, if we are darting for cover as the storm arrives, we share the discomfort but know it will be over before tomorrow.
If you have read this far, thank you for giving me your time to read about the weather, and I haven’t been moaning, honest, – have a great 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.
Brazanne Muse 