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 …
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 …..
I have tried so many things in my life, some I have even done well! I was one of those people who aimed for perfection, so I always set myself up for failure as no one is perfect.
Importantly do everything for YOU!
Learn a new subject, if it’s of interest to you
Go on that holiday, if you want to go there
Spend time with people who you love to be with
Cook the food you want to eat.
Everything we do that is OUR choice, we will enjoy whatever the outcome.
I tried dressmaking, unwearable results – but I had fun trying
My paintings won’t sell – but I can lose myself in creative abandon
Dancing, no medals – but wow do I feel good
Singing – who doesn’t think they sound good in the shower!
When we do things for others, our failure is almost guaranteed!
My husband said I needed to lose weight, I put in on!
Joined a gym to keep a friend company – I HATE the gym, wasted the membership!
Took tennis lessons – I have weak wrists – lost every point, inevitable!
Decorated to “help” but I can’t climb ladders – half a wall and pain for a week!
So yes try things, but be ready for inevitable failures. I can now accept my outcomes and I love I have tried. We get one life, don’t let it be “I wonder if I could’ve done x, y or z, find out. If it’s not a perfect result, don’t worry about, no one else will, not really. You can always try something different.
I have a chronic pain illness, brain cyst and co-ordination problems, so things often don’t work out in reality the way I imagine. I used to fret, fear not getting it right. Lacked confidence in myself, worried I wouldn’t be as good as everyone else, it would stop me trying. Life passes by and you lose the opportunities. Grab them, reach out with both hands and just go for it. Don’t leave it too late, I am glad I tried things years ago as now my health wouldn’t let me – my horse riding and motorbike track days are memories – but what memories! I believe we all have at least one thing that will be ideal for us, and maybe something different in each new decade. Now, I have my yoga, it’s perfect for me. In this I can never fail as I acknowledge what is, and “what is” changes constantly.
Some days things go well, others they don’t – that’s life! I have a few successes but probably more failures but, to keep it positive, I have decided I am a “Successful Failure” as I successfully tried didn’t I!
We can so easily go along to the class our friend wants us to go to with them. But it’s their choice and they will enjoy far more and be more motivated.
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.
Controversial Topic Warning! This is me with my lovely nan taken just prior to Christmas 2016 when she had been in a care home for nine months after having a nasty fall in the January and breaking her hip at the age 91. She is an amazing woman who is so very special to me and I am extraordinarily lucky to have had my grandmother for so many years of my life.
Her 94th birthday is approaching in just over a week’s time. I would love to be saying “she will be celebrating her 94th birthday …” but sadly, she will not be, and maybe even sadder, we as a family will not be celebrating either, just left to wonder how on earth she is still hanging in there! Please don’t misunderstand me, I do not want my nan to die, but she began disappearing from her physical body shortly after the photo above was taken. She is now hardly more than a skeleton in a bed she has not been out of at all for 3 birthdays.
Before her fall, she was active and alert. Both she, and my grandad (2 years her senior), lived independently together in their little bungalow, still enjoying trips out for lunch, visits and always ready for a chat over tea and cake, reminiscing and laughing – my inspirational swans! They had been married over 70 years and had never spent a night apart. Amazing. They always said they would “go together” as neither could bare the thought of living without the other. Then came Nan’s fall …..
Spending a whole weekend in hospital before her operation (they don’t like to operate at weekends) she finally had her operation and it was a success. However, what she needed so much at that age was care and assistance to use her hip and not cease up, but this wasn’t given and instead she was returned home by ambulance and left to the care of her 93 year old husband. A care plan should have been in place before the hospital discharged her, the family had to provide as much emergency care as possible and fight to get a care plan in place. Finally it was arranged for carers to come in 3 times a day to give Nan help washing and sort her meals.
But poor Grandad. We would buy him “ready meals” and cook extras so he would have meals in the freezer. But he had started getting forgetful and couldn’t remember how to use the microwave at times. With Nan unable to get out of bed, she would call for him to help her. He tried bless him but it was too much for him. Nan changed suddenly after that. Along with the physical restrictions she was changing, we were told she had dementia and the fall had triggered it. She would ask him to help her out of bed but he was too frail to do this and he was depressed and saddened by the whole situation and his health started to go downhill.
He worried constantly about not only how he could help her, but he feared being in the same situation as her. Even then he tried to comfort me when I visited one day and couldn’t hide the tears, putting his arms around me and saying, “It is sad darling, but we are old, that’s what happens, we have had good lives but you still have yours and need to live it not spend it here”. Eventually, it was considered it would be best for him to have some respite time and for Nan to go into a care home for a short while where hopefully if she got some physio and help she could move again things would get easier.
Sadly, just weeks after Nan went into care Grandad deteriorated quickly, got taken into hospital and passed within hours. The family were stunned. We had been prepared to lose Nan many times over the past months but not Grandad. I feel he just couldn’t cope and he couldn’t bare to see Nan so helpless and forgetful.
Nan had started to not always recognise who we were when we visited. Sometimes she asked where Grandad was and called his name at night. We were in a dilemma as to where she should be told he had passed or not. I felt she should be told, but didn’t know if she would take it in, remember it, or whether it would be so unbearable for her. In the end she asked me directly one day where he was. Tears sprung, I held her hand and shook my head, “he is waiting for you Nan”. There were tears in her eyes I am sure, but she blinked, changed the subject, and offered me a chocolate. She had always found it hard to share her emotions – but I don’t really know if she took it in.
So, my beautiful swans always knew they couldn’t say good-bye to each other and they didn’t. Nan unable to get to the funeral even if she had been aware and able to, and Grandad no longer seeing his wife changed, unknowing him and passed before he feared he would need to go to her funeral.
I miss my grandad and grieve for him so much, but am thankful that he did not have to suffer going into care which was his biggest fear. My nan, I grieve for the loss of the spirit of her, even while her body still continues to function. Nan is existing not living. For myself, I know I do not want to end my life the way my grandmother has to.
I do not fear death but I do fear loss of control, I fear living in a country where we have no choice as to how and when we die. Is this fear, that others must feel too, going to lead to more people taking the option of suicide, and it would need to be an ‘early suicide’ when you are still able to do this? Then the fear of would you succeed, would you have the strength? I don’t think suicide is selfish, I think in some circumstances (and I have others to explore!) it is a selfless act. I just wish we could have choice and control, assistance, when the time is right for us so we don’t have to fear our final years, whenever they may be. Why can’t we be allowed this dignity, we are kinder to animals? After all, those who don’t agree with assisted dying do not have to choose this option. I do not say they are not allowed to suffer if they want to, so why do those against it say we must?
Pain, fear, suffering or any kind, is surely a form of torture? Are those who say you must deal with it happy to see human’s suffer? Would they be able to look into the eyes of any individual who wanted to be relieved from their pain and suffering, and say, “sorry, you need to suffer?” or would you rather allow them to slip painlessly away?