Tag Archives: hope

The Loving Enchantress of Family

‘There where the waves spray
The feet of solitary reefs…
A loving enchantress
Gave me her talisman.
She told me with tenderness:
You must not lose it,
Its power is infallible,
Love gave it to you.’
Alexander Pushkin, ‘The Talisman’

Let’s be fair, to use a quote from a Russian author of great repute is a little bit pompous but even if it is, in this case I think it describes beautifully to me the subject of this week’s blog. I came across this additional quote recently that also made me think about the same subject and it too sums up my feelings nicely.

‘Now and again in these parts, you come across people so remarkable that, no matter how much time has passed since you met them, it is impossible to recall them without your heart trembling.’
Nikolai Leskov, ‘Lady Macbeth of Mtsenski’

Those who know me well, won’t be overly surprised to see me quoting Russian authors. While not a fanatic, I have always been drawn to the power and drama of Russian writers. I love the intrigue and power plays, especially in the pre-Russian revolution era. I am however not about to go down the route of discussing Russian literature. This is a skill that far exceeds my limited talents.

No, these quotes reminded me of something perhaps far mundane than Russian literature although for me something far more real and far more important. These quotes brought to mind the power and love of my extended family; common parlance calls us, ‘The Hogans’.

Alandi Anette 15 May-1-83Reality is that we are far from ‘The Hogans’ that once existed when the last of the modern core Hogan family was born in 1948 (my mother as it happens). We are the Hogan clan yet so many of us are a generation if not even two generations away from the original Hogan title. Some of us may not even share the blood of the Hogans but through upbringing and shared experiences are as very much a Hogan as anybody else. For we are Ironsides, Lydons, McDonalds, McCarthneys, O’Sheas, Donaldsons, Farrellys, Healys, Gallaghers, Scanlons, Bantins, Mathers, Buckleys, Warrens, Carrolls and probably many more that I cannot keep track of. What unites us all though is the strength of identity and indeed the strength of personality of twelve brothers and sisters. For us first cousins, these aunts and uncles; mothers or fathers are the originals – the very heart and soul of the Hogan clan.

The Hogans had always played a key role in my life: my summers were spent with cousins Alice, Brid and Una. Alice was also there for some of my first alcohol experiences as I was there for hers (least said about that the better!). My adolescent years were spent with my Aunty Mai winding me up and my cousin, Kathy (her daughter) happily helping her. My Aunty Ann would take me swimming in the rivers near their house while Uncle Vinny took me out on the family farm and showed me how to herd cattle. I still use the breathing method cousin Clare thought me one summer so I could swim further under water. Uncle Frank and Aunty Marie along with their daughter, Roisin, gave me my first experience of spending time with someone with a disability and seeing how disability makes you no different than you would be different without the disability.

Later, Aunty Robin in England with her husband Brian, provided me with a respite from London when things got very hard. They were my escape, they gave me the ability to call them on a Friday night and say, ‘is it ok if I come on the next train?’ Their daughter Maureen allowed me be her bridesmaid, terrifyingly about 30 years ago. Uncle Don, the history professor, helped me prepare for my final history exams in school. My cousin Carol in England, gave me the chance to spend time her in her school before my teacher training interview so at least I could pretend I knew something about the English education system. I could go on. We are family that supports each other (while of course being busy winding each other up and talking very loudly at each other!).

For many years, I didn’t value the Hogan family. I loved spending time with them but I didn’t recognise just how important having a family identity was. I didn’t see just how lucky I was to have such a powerful strong group behind me who would support me through to the ends of time; through arguments and laughter, this group would always be there for each other.

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my husband, Chris with our nephew and our little cousin.
My husband, also comes from a very strong family, one with an extremely strong family identity. He opened my eyes up to this power. From day one, he made it clear that in his family, family supported each other no matter what. You may have had a major falling out with someone the day before but if they needed you, you dropped everything and went to help them. His policy has always been that family comes first, that you value whatever moments you can spend with family. Living outside of Ireland, striking the balance between family life and simply life is hard. Chris pushed me to go home more often and never questioned whether we would attend family weddings, funerals or parties. If they were happening and we could find the money to pay for it, then we were going.

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Uncle Joe with our cousin, Niamh
Consequently, I found myself at my Uncle Joe’s 80th birthday party in 2013 in a small town in Ireland called Portlaoise. This is the family base, where the family has been for very many generations and where many of the aunts and uncles have returned to in retirement. Joe had lived for many years in New York and in typical Hogan style had been a tower of strength and support for all the cousins who ventured to the states for work or even just for holidays. All who saw him there returned with stories of his kindness and generosity. It was no surprise therefore that his birthday saw a significant turn out of cousins and all the aunts and uncles. Motivation to attend was also Uncle Martin. Martin was sadly ill with cancer at the time.

 

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cousin, Liam. I may or may not have forgiven him for the nightclub.
This was perhaps the first occasion where most of the cousins in attendance were now adults. Now, I have only vague memories from that very dodgy night club my cousin Liam brought me to the night perhaps I need to black them out for my own sanity! It may have reminded me of my teenage years in some of the rural clubs I used to attend but it was so much fun. Surrounded by my cousins, drinking, laughing and dancing. What could be better?

 

For me the night was a turning point in my understanding of the importance of the Hogan clan. A sad reality was suddenly made clear: Joe was now 80 and my oldest uncle, Uncle Liam was now 87. Martin at 82 had cancer. How much longer could the aunties and uncles be the focal point around which the family pivoted? What would happen when that pivot point no longer was there? What would happen to the strong family unit that was created the day the eldest sibling, Uncle Liam, was born in 1926?

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Uncle Martin
Just three months later Uncle Martin died of colon cancer. He was the first of the 12 brothers and sisters to pass. For all of us it was a heartbreaking moment. Even today, writing this I can’t help but shed a tear. Martin was always adored by us cousins and the memory of his funeral mass trying to comfort my cousin, Brid, when I too was in bits will always stay in my mind. His funeral however cemented the need for us cousins to be proactive about sustaining our relationship in the long term. A week earlier Uncle Denis (our Aunty Brid’s husband) had also died further demonstrating the temporary nature of family and in this case the siblings. The family having attend two funerals over the course of 8 days, led Uncle Don (Peggy’s husband) to comment, ‘Right then, see you all next Monday or maybe I won’t.’ Dark comedy not untypical of Don!

 

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The picture is out of focus but still love it as it is 30 cousins together!
Martin’s funeral was the biggest gathering of cousins ever with 30 first and second cousins. That next morning, I went home and befriended every single cousin I could find on Facebook and I have continued to do so ever since. Consequently, I have from the side lines begun to know what my extended family are doing with their lives. We have a much easier way of contacting each other than dependence on our parents.

 

Now we find our aunties and uncles reduced from 12 to just 9 with Uncle Liam passing on in 2014, Aunty Brid and Aunty Ann (Uncle Vinny’s wife) in 2014.

The family continues to age and but also to grow. Aunty Robin likes a party. Any excuse really. So turning 80 needed a party! Despite moving to London in the early 1950s, she has always been the one with contact with all of the siblings and indeed a lot of the cousins. If you need a message passed to the family, get it to Robin and your work can be considered complete! This family centred focus required therefore her party to be in Ireland! When her daughter, Maureen, pushed her to focus on exactly who was going to the party she declared, ‘Everyone!’. Robin had sent out an open invitation to every Hogan relative not matter how distantly related.

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27 out of the 38 cousins

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47 or so of the first and second cousins. Biggest gathering of cousins ever
Consequently, all her remaining brothers and sisters and their spouses; 27 (of the 38) first cousins; and a further 20 second cousins took up the call. Cousins came from Australia, the UK and us from India. Us Hogans aren’t exactly the quietest bunch in the world so you can imagine the chaos that reigned. Tradition continued and at 4 a.m. I went to bed dragging my reluctant 73 year old Uncle Frank with me! Let’s be fair the only reason the cousins and Uncle Frank ended the sing song was the residents bar refused to serve us. Apparently, 4 a.m. was the breaking point for staff that had been dealing with the Hogan madness for two days.

 

These links will probably only work if you are a member of the Hogan Facebook group. Working on a way to upload them to YouTube and will replace these links when I do.

The traditional start to a Hogan sing song – trying to convince Uncle Frank to sing – while he claims – oh no he couldn’t!

Jon’s first solo song at a Hogan Sing Song – he has sung in national choirs for years though.

Cousin Brid – now she is Uncle Frank’s daughter so no surprise she leads a song

Connor on the harmonica!

The New Aglish Hogan’s in full swing

Una leads the sing song

Very English barber shop, totally at home in our very open family environment. These three are professional or near professional musicians

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Aunty Mai – now the eldest sibling.
Once again, I was struck by just how important family is and sadly just how important it is for us, the next generations of Hogans, to take up the mantle of ensuring that when the older generation is no longer there to provide reasons for us to gather, that we gather anyhow. As a start we now have a Facebook group, Hogan Madness with over 47 members, mainly cousins. We hope this will help us to sustain a relationship that does not pivot around the siblings.

On the other hand maybe the next gathering is still in the hands of the older lot. I believe I heard Aunty Mai declare that, ‘wasn’t the party just great, I think I’ll do this for my 90th next year!’ Kathy and Denis, enjoy the preparations!! Put Chris and I on the guest list because nothing would stop us from being there.

 

Feel free to like or share this or any of my posts. I would also love to hear what you think and would love if you could drop a comment below also. 

Not Blue in Blue In Maldives

Moving house and internet being cut off (because our Indian visas expired – despite having new ones) has delayed this blog significantly – please enjoy. 

A certain degree of sympathy is required of you, my dear reader. I need you to empathise with me and feel my pain. I need you to imagine you are with me and to stroke my pain and make it all go away. Not only am I sat in Male Airport (early as always): leaving the heaven that is the Maldives; not only am I sat on a hard uncomfortable seat; not only am I sat in what can only be described as terrible air conditioning; but I am sat on two sunburnt bum cheeks! See! Understand now why I need your sympathy? I sit here with the equivalent of a toaster underneath my bum and it hurts!

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Motorway to / from the airport! Better than the M25 any day!
More about my bum later. Well at least for you, for me we are unfortunately going to have to co-exist for just a little bit longer.

On the plus side, I have just had the most incredible ten days of my life on the stunningly beautiful island of Hembadhu in the Maldives.

Wait though, first the exciting news! No, wait first two exciting pieces of news! Are you ready?

Diving, Breathing and Fatigue!

I have fallen in love! Yes, Chris is still loved, don’t worry about that but I fell head over heels with diving at first breath! Wow! Impulse and nothing more led me to try a PADI Discover Scuba Diving – just two hours. This turned into a Padi Scuba Diver course which turned into a Padi Open Water Scuba Diver course which turned into a Padi Adventure Diver course. Totally unplanned and totally unpredictable!

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So I said I had two pieces of exciting news. Well, perhaps not two individual pieces perhaps it is best described as two conjoined pieces of exciting news! So what is it? Much to my complete surprise and thank god because after that first breath I really hoped there was no going back on diving, I could breathe so much easier underwater and it would seem after 9 dives – no fatigue issues!

For those reading this blog for the first time, you will not be aware that after a rather serious illness I have been left (hopefully not permanently) with reasonably serious breathing and fatigue issues unless both are rather carefully managed. You would never know upon meeting me that this was going on but it is.

Seriously, an hour’s diving burns roughly 350 calories; now the equivalent of that would be say a five mile walk. Let’s be clear there would be no problem in me walking five miles, can do it relatively easily, could even manage a ten mile walk with a break in the middle although by the end I would probably be utterly exhausted.  But could I really manage it day after day while doing lots of theory study in between? Not a chance! It felt miraculous.

Even if I felt a little tired before diving, the fatigue vanished as soon as I went underwater. Not only did it vanish but it didn’t return after. The first few dives, I dismissed it as purely the adrenalin effect and kept in the back of my mind the danger of living in an adrenalin bubble. But no, diving seems to be genuinely therapeutic for both my breathing and my fatigue levels.

The guys from the dive school, I don’t think quite got just how miraculous this felt to me. How incredible that I can do a sport and it didn’t utterly exhaust me, it didn’t cause any muscle pain or leave me struggling to walk or simply keep going. This situation is relatively rare these days, perhaps once every six weeks or so but with the amount of exercise I have gotten over the last ten days, it should have been guaranteed!

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Will and Rusty from Blue In Maldives

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As you can see diving makes me just look like a supermodel!
A perfect example would be when on our holiday, I mismanaged my energy levels by getting up early for a morning dive and then doing a night dive. By the time I sat for dinner at about 9p.m., I was exhausted. On the way back to our villa, I had one of my energy collapses.

 

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The scene of my epic emotional battle: ‘To Dive or Not to Dive. That is the question!’

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Everyone happily getting on with their tasks, while I tried to convince myself I was a fool to dive! I was wrong!
 

 

 

Rising the next morning for another morning dive, I was truly exhausted and in a lot of pain. This was however my last chance to dive before we left the Maldives and my last chance to complete my Adventure Diver certification. Getting on the boat, I was completely out of it. My brain was telling me that I would be a fool to dive, my heart was telling me go for it!! Only teetering on the edge of the boat in my full diving gear, did I finally make the decision to dive.

Within minutes the pain and exhaustion had disappeared and 40 minutes later I came to the surface fully re-energised. I even went on to do a second dive! Even more miraculously, there were no side effects – the pain and fatigue remained gone. I reached the decision that my mistake was not to do two dives in a day but rather to reduce my sleep time by rising early and then going to bed late – this was my mistake.

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Rusty, the crazy South African
What can I say? I truly believe it is the first time in my life where I have tried something and simply adored it from the get go! Helped of course by the amazing guys (and Pip) from Blue In Maldives: the dive school based on the island. What a great bunch of relaxed, laid back but incredible teachers they are. Have to give a big shout out to Rusty, a crazy South African but one so enthusiastic about his sport that even the most stubborn couldn’t help but fall for diving.

My only quibble with recommending Rusty however is his seeming inability to point out turtles – 8 dives it took before I saw one – 8 dives!! Every day, everyone was talking about these amazing turtles, ‘wow, it sat on me!’ etc etc and I am just stood there saying – “no, didn’t see any again!!”

I could spend time trying to explain to you how wow it was – but let’s let these pictures do the talking. Pictures were taken by William Erazo Fernandez: an Costa Rican instructor at Blue In Maldives – the dive centre at the Taj Vivanta.  An amazingly fun guy: passionate about diving but you can also see with a real passion and talent for photography.

You see, I have a problem and they say the first step to solving a problem is admitting it – so here it goes – ‘I adore diving!’ Now that isn’t an obvious problem, is it? Well it is when you are 10 days on an island with nothing more to do than read and snorkel. Still not spotting the problem? Well, let me explain. You see when you find something to do that is addictive, its always best if for example it is something like walking: buy some good boots and a raincoat and off you go. Diving on the other hand is not cheap. It’s definitely value for money but it still takes a lot of money out of your bank account! So, when one course led to another – my bank account became increasingly empty! Was it worth it? Fill my bank account with cash and watch me do it again!!

The last course I completed was an Adventure Diver course. Yes, me – Karen – is an Adventure Diver! Could you have ever guessed?

This course consisted of a Deep Dive – this now allows me to dive to depths of about 30m. To be honest the deep dive didn’t feel any different from the other dives, just well – deeper. The main benefit being that you are able to see things that are not higher up! Like for example the Housereef Wreck – at 18m, I could see a fair bit of it but as a deep diver I could see it all.

My second adventure dive was a Drift Dive! Yip, you hop into current and allow it to pull you along. Definitely, a little unnerving but great fun. Our first attempt at drift diving saw us jump into quite a large swell for a girl who had only boat dived once before. I was really nervous! What would happen if I jumped in and then whoosh the current dragged me away from everyone else and I was left all alone. With my heart thumping, I jumped in and descended immediately – to what? To peaceful, calm waters!

What?? Given the inability to hold a full conversation underwater, I spent the dive just a little disappointed with this drift diving business. I mean it was stunningly beautiful but where was this current threatening to whisk me away? Where? Nowhere, that’s where. Turns out, we had drift dived in a place that had no current that day. Instead we went deep diving.

The next day was attempt two at drift diving. This time, I was super chilled. The sea was like a mill pond, not a ripple in sight. Gathering on the surface, we all descended together to a current! Whoa! Didn’t expect that! A reasonably serious current for a novice drift diver. It was unnerving, the only way to stop moving was to hold onto a rock on the bottom. I failed to stick with Rusty as much as I should have done. I did try but I kept being moved on. His rather greater experience however ensured that he was never far away, although I think he found me a little exasperating on that dive.

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The spectacular coral from our drift dive, no wonder I got distracted and lost Rusty (sort of)!
This of course was the dive that anyone who has heard me talk about my diving experience has heard the story about! There we were, finally checking out this really cool turtle, with me hanging on to a tiny piece of rock, when low and behold he starts swimming towards me. I’m clinging onto this little bit of rock thinking, ‘What do I do? What do I do???’ He gets closer and closer until I’m staring into his eyes and me into his. I’d love to describe this has an underwater ‘pastoral scene, the essence of Victorian writing but no.

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More me doing more of the, ‘What do I do? What do I do???’ Mixed in with a little, ‘Good god, you are beautiful’. So I’m faced with the decision, let go and drift away from the group but by this ensuring that the turtle can move wherever he wishes or hold on and who knows what will happen!

I held on! What did he do? He swam right over my head, hitting my forehead with his back fin as he passed! Seriously, without doubt one of the coolest moments in my entire life. I will never forget this, ever!

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This blog finishes with my having returned to India (where it is super serious hot!). I have not only checked out a local scuba diving group but I’ve even been scuba diving in a local diving pool. Now, it ain’t no Maldives but it will do until I get a chance to dive properly again. Not only that, it doesn’t seem I got typhoid or any serious skin ailments from the pool – so that’s great news. 

 Finkick is a great bunch of people who try and travel a least once every couple of months to diving spots around India but mainly around Asia. I wish I could afford to go all the time but I will definitely be joining them as often as the bank account allows! 

All donations welcome!

Have you ever dived? If so, where and what did you think of it? 

If not, would you like to? Why?

In case you would like to see more underwater pictures – here you go!

 

Soaring on the Thermals of Life

A blog is well overdue and indeed a blog about my recent travels to the Maldives is well underway. Life however (largely revolving around scuba-diving while on holidays and then an immediate return to a full house move) has gotten in the way. 

A blog however is needed so I thought I would share with you something I wrote a few months ago based on WordPress writing stimuli. I’d love to know what your answer to the question would be?

My head is a font of ideas and inspiration. My thoughts fly from idea to idea, from location to location: forever dreaming of a better place; a different place; an intriguing place. The world is full of opportunity: a chance to do something different – to be something different.

I am not unhappy in the world I currently occupy; on the contrary, this world is an exciting and thrilling place. This world fills my ordinary every day with excitement. As I sit in the quiet of my rocking chair with my laptop cosily placed on my lap, I look out upon the city placed below me and I understand that out there there is so much that I do not understand, so much that I probably cannot understand. That makes my current life a good life. A life devoid of ignorance is a life of predictability and dullness.

If sitting in my comfortable chair I was however to feel a certain itchiness that slowly became a tugging feeling that slowly pushed me forward in my chair as wings sprouted from my back and gently lifted me into the air, where would I fly? Where given the sudden ability to go wherever I wanted, whenever I want – would I choose to travel?

Where?

onthewaytoRoopkundlakeLITTLE2.jpgWould I go to the soaring mountain tops of the Himalayas and glide through mountain passes (shivering perhaps just a little now that the summer evenings are easing away and becoming increasingly cold)? Or would I gently glide towards the sea and spend my days wafting along the thermals and resting every now and again on the golden beaches of Goa?

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Or would I go further and, like a cormorant, fold my wings and dive deep into the ocean to marvel at a world unseen by most?

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Yes, that’s me with my friend, Turtle.   Picture credit: William Erazo Fernandez

I think perhaps I would not choose to fly to the cities of India, thick with pollution and noise and over-crowding. Where would I rest amongst the broken roofs of the slums and the harsh edges of modernity?

Or would I fly to a person and not a place? Would I fly to someone who will welcome me with open arms despite the rather odd back appendage I had acquired? Would I fly to where I was welcomed and where I felt safe? Do I even want to feel safe?  Is feeling safe really the joy that all purport it to be or rather is feeling totally safe a good thing at all? Is it not better to live life knowing that it all may come tumbling down around you? Are you more likely to take risks and try something new if you know that your chance to do this may not last forever?

My answer to these question is direct. I have no answer and nor do I really want one. I will plan my time, my travel but I will forever be excited by the thrill, the fear, the anticipation of what I do not yet know will come.

Where would you soar on the thermals of life, given the choice?

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An Ode to India – travelling with disability

For me the decision to travel to somewhere new is usually immediate and always filled with excited anticipation – sometimes perhaps with a hint of nervous anticipation. For me the world is large with so many places to visit and so many experiences to have but the world is also small. Nowhere is any more than a few days travel time away. If the world is so small, why not see as much of it as I possibly can in the 80+ years I will spend on this planet?

Everyone is different etc etc, but seriously I don’t get those people who are happy to stay put and never do anything that is out of their immediate knowledge and comfort zone. Seriously, that would be ridiculously boring. I’m guessing, especially if you are a regular reader of my blog, that you feel somewhat similarly.

Now I get that circumstance, personal or financial, can sometimes make having great adventures more difficult or impossible. Having been in the personal circumstance where any form of travel was physically impossible – I get it. I also get just how frustrated I was. I may not have had the ability to do much more than sit on the couch but I still watched travel documentaries – do it via somebody else if that is all I could do.

For me it was obvious that when I moved to India, many (although by no means all) of my friends would excitedly think, ‘Whoooo, whoooo, just the excuse I need! I’m off to India!’,  expecting my friends just to inform me they were coming rather than even waiting for an invitation or permission! Now Colin visited me in October although only for one night – he was here for work. While amazing to see him, I don’t think that is what I had in mind.

The first friend to visit me however was unexpected – well kind of! She has got a just go for it attitude so perhaps I shouldn’t have been surprised when she informed me she was coming on a visit. Her visit however could never have been a spur of the moment decision for her and for purely personal reasons. There was no way she could have just booked her ticket and then thought about the trip later. I can do that, my friend Sarah who I mentioned in a previous blog can do it – but not Gillian! Her decision required bravery and determination.

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Why? Gillian has Cerebral Palsy and this brings its own challenges – walking, balance and fatigue to name just a few. This blog however is not an ode to Gillian – although her bravery and determination indeed justifies an ode to her! This blog is an ode to India.

India can be so unutterly frustrating! It can bring the very worst out in you. You get so frustrated at short-term thinking, false promises and under-achieving, never mind the ‘it’s not my fault’ lack of responsibility taking. Seriously, why I haven’t been jailed for killing somebody in the year we have been here sometimes astounds me!

India however has done itself extremely proud! It can hold its head up as being one of the best countries in the world. Gillian is from the UK, has a German mum and has travelled around Europe and Australia. Without doubt, she says, India treated her better overall than anywhere else she has ever been. Now she’s not referring to the great access everywhere and the smooth pavements – well now she couldn’t really could she, given they don’t exist. She is talking about the people.

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Datta, our driver, is ready and waiting when Gillian arrived

From arrival to leaving she was met by extreme care from friends and strangers. Nobody but nobody on the streets or in shops / restaurants made her feel uncomfortable or made her life more difficult. On arrival in Mumbai, my driver anxiously helped the very, very tired and stiff Gillian into the car in Mumbai. He then spent too weeks worrying that he had touched her because knowing she prefers to do things herself, I had silently indicated to him to give her space. While Gillian will just remember this (if indeed she can) as somebody seeing somebody struggle and doing what they can to help.

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Maggie making Gillian a yummy traditional South Indian breakfast!

My maid, Maggie, the first morning after she arrived went out of her way to tell Gillian that anything she needed at all to let her know and then made her a gorgeous breakfast.

We went to lunch in Ram Krishna restaurant in Camp, the waiter without saying anything or making any form of fuss pulled the booth table out as far as it would go so that Gillian could walk to the seat and not have to slide around. Now Gillian is more than capable of sliding around but that instinctive / spontaneous act was heart-warming.

She wanted to try a pair of trousers on. When she got into the changing room there was no stool but within micro-seconds one arrived – not a word was said, it was just left in the room. Again no fuss. Just a recognition that there was something they could do to make her life easier so why not!

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Rashid sitting as he explains about a temple so Gillian could also sit

When we did a walking tour of old Pune (Chalo Heritage Walks – my lost blog was about this tour), Rashid Ali, the tour leader, couldn’t have been kinder. He constantly found places for her to sit and rest, when she had to take her shoes off to go into a temple, he got down on his hands and knees to put them back on.

There was a really high step into the temple and initially Gillian struggled to get up it. Seeing her struggle, a lady ran across the temple and offered to help her.

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This was the lady who stopped Deborah so Gillian could get by

Later in this same temple, my friend – Deborah (the photographer from my last blog) said that as she was leaving the temple an old lady stopped her so that Gillian could get by. Again, not really necessary but very sweet.

A few days later with Rashid, we went out to Bhigwan Dam which is a nature sanctuary – amazing, if you live in Pune you need to do this. This required the use of a fishing boat. The boatman without saying anything moved his boat so there was an easier spot for Gillian to climb in. When we were required to get off the boat and walk to where we could spot some flamingoes, the boatman first scouted the flamingoes – just to be sure that Gillian wouldn’t walk all the way and not see anything.

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Our very kind boatman

On return, he moved the boat a little further so that she would have to walk less. Rashid jumped into the mud and got himself filthy so that Gillian could climb off the boat a little easier. When her stick made a small section of the boat dirty where she would have to put her hands, Rashid used his own hands to clean the area – again with little thought just spontaneous action.

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Rashid cleaning mud off the boat so Gillian wouldn’t get dirty

We saw the flamingoes but they were just too far away for my camera to take a good shot and Gillian was struggling to see through binoculars – this requires balance and good use of both hands! Rashid initially tried to help her hold them but on spotting a man with a huge lens on his camera, I asked him if he would take a photo to show Gillian – he did it with enthusiasm and a great smile!

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Big lens! This enabled Gillian to see the flamingoes a little closer up

In Goa, we walked to a restaurant along the road but we wanted to go back along the beach. To get to the beach however we had to go down some steep steps without a handrail. Gillian got a little scared but the waiter ran over and gently took her arm and led her down the steps. Again no big deal, it was just what you do!

I could list and list and list all day and all night the amazing individual things Indians did to help make Gillian’s trip a success but perhaps it is best summarised by Gillian’s own insight. She compared her experience her to her experience in Australia. In both situations she felt she got the same treatment but the difference was the motivation. In India, she genuinely felt it was instinctive when people stepped up to help her. In Australia, she felt it was because people were motivated by the understanding that you should help people – there was little instinct behind it. In India, she felt Indians didn’t feel like she was any trouble while in Australia she felt people thought she was making trouble for them.

The thing that had worried me most about Gillian’s visit and therefore was the greatest surprise was staring. I had warned her and warned her that she would be stared at and photographed – perhaps even more than I am on a regular basis. It is far from unusual for me to suddenly have blank strangers around me and somebody else taking a photo, sometimes with permission but often without. Gillian is used to being stared at in the UK but I was worried that here it would be too much even for her.

I was particularly worried about visiting the Gateway of India in Mumbai. I had been there only a few weeks early with my friend and it was the most intimidated I have ever felt in India. We were simply sat down and then suddenly there were 20 plus men taking pictures of us and they simply wouldn’t go away. We had to get up and walk away ourselves. Wherever we were around the Gateway people stared and stared at us. This was on a Tuesday, we were going on a Sunday when it was busier – I was worried!

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Gillian in front of the Taj Mahal Palace Hotel. Picture taken at the Gateway of India – nobody is staring! Seriously, nobody!

So before going to the Gateway, I warned her again. I really wanted her to be prepared for it – she even suggested that we didn’t go. I wanted her to see it however so we went. I couldn’t believe it, not a single obvious stare and not a single photograph!!! Indeed, that can be said for the whole trip. Her whole trip in India there was no staring or photographs! Honestly, I was stared at less over the two weeks that she was here than I have ever been. Clearly, I need to get my stick back out – it appears to make you invisible!

I lie, there was one occasion where she was stared at and stared at so badly that she felt so bad that she left. I live in a very expensive apartment block (society). The people who live her are 50% expats, 25% NRIs (so people whose parents were born in India but they weren’t) and 25% very well off Indians. People in this society as a whole are well off, highly educated and highly travelled. Yet, it was these very people who stared so hard that Gillian didn’t want to hang around in our garden anymore! I was thoroughly disgusted.

In my ignorance, I expected the poorer, less educated elements of Indian society to be the starers – well they surely haven’t received the same education about disability or perhaps even the same exposure, have they? The people who stared shouldn’t feel proud and these people shouldn’t hold their heads high – in contrast, they should hang their heads in shame. For they were the only people in two weeks who didn’t do everything they could to make India proud of them.

Gillian’s experience of travelling with a disability in India was just an isolated experience, perhaps she was lucky or perhaps that is just the way Indians are. Somebody did tell me that Indians would look at Gillian with lots of respect because despite her disability she was still here! I have no idea if you are disable or your child is and you travel to India will you have such a hugely positive experience but if you are thinking about it, I would say from my experience with Gillian – go for it! India is not an easy place to travel never mind if you are travelling with a disability but I genuinely feel that you don’t need to fear how people will react to you being here.

India is definitely somewhere to book with excited anticipation (but just a little bit of nervous anticipation!).

Finally, India thank you. Thank you for being a major part of my friend’s holiday of a lifetime. Thank you for consistently showing her what an amazing country and an amazing people you are. Thank you.

I Don’t Think I’m Ready But Perhaps I Should Anyhow

This blog was first written about 18 months ago. I was too embarrassed to post it – too embarrassed to admit I wasn’t strong enough to cope. Since then, I regularly come across it, read it and instead of thinking why was I such an idiot about the whole thing? Why was I too embarrassed to post it? I continue to feel embarrassed – its ridiculous! 

So I have decided to be brave and post this blog. It is well out of date but I don’t think it matters. Perhaps somebody who is having a similar psychological fight as I had will read it and feel that they are not alone. Maybe they will see the ridiculousness in not talking about it and actually speak to somebody! 

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I’m doing something that only one person vaguely knows about – at least they are slightly aware of its existence but they don’t actually know I have started to use it. Not even my husband knows about its existence, never mind the fact that I actually have started to use it. This goes against everything that I have tried to maintain since I first got ill. Since I first got ill, I have always said that being open about what was going on, in particular with my husband, was absolutely key. Not being open might lead to distrust and misunderstandings. I have always argued that it was wrong to do anything that might encourage that feeling.

So what am I doing that is so awful I can’t even tell my husband? What is it that I am feeling so unsure of, perhaps even so stupid for doing it that I can’t tell my husband? I do not understand what makes me feel so embarrassed, I do not understand why I don’t want to share what I am doing with anyone. So what am I doing?

While we were on holidays and I had a relapse, one day we walked back from the restaurant and I clung to my husband’s arm, desperate for his support and to help me balance. It dawned on me that day that if I could find something that would help me maintain my energy levels and support me when I was having a bad day, then that surely would be a good thing.

So what have I invested in? I have invested in a walking stick.

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And look just how fun it is! And its my favourite colour!

The fact that it took me three paragraphs to get to the point says it all. I am not sure I am ready to use a walking stick, walking sticks are for old people or invalids – I am not old and I do not feel like an invalid therefore surely that means I do not need one. I am embarrassed at the thought of using it and I am embarrassed at the thought of being seen with it. Does using one mean I have given in – once again – to this illness?

You could, very rightly, argue that if I am using it to walk further on a bad day then it is assisting me in doing more than I should. If I could exercise myself better then yes, using it on a bad day would surely little by little assist me in improving my health. I cannot however exercise myself better so surely anything that enables me to do more is just increasing the intensity of my exercise? I think I am just looking for excuses as to why I shouldn’t use it, rather than looking for justifiable reasons why I should.

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True for so much of my illness, definitely not true in this case. Being too embarrassed to discuss my need for a walking stick preventing me using it. This was not me being strong but me being a coward. 

It has only been used twice, having owned it for more than a week I bought a folding one so I could have it in my bag to use should I be out and suddenly get an unexpected collapse of energy. I have   carried it around for a week every time I went out to use in just those circumstances. On Saturday when we walked across a field to get to a nuclear bunker (don’t ask), I was finding the surface hard going and thought just how much my walking stick might help me. There it was just waiting for me in my bag on my back. We were with friends however and I was embarrassed. Embarrassed because my husband had no idea I had it and embarrassed because then my friends might look at me as sick girl. I seriously overdid it on Saturday and as a consequence paid the price on Sunday.

20140318-080008.jpgIf I had used my walking stick for the entire duration of our outing, would I have overdone it so much? Would it have enabled me to use less energy by providing me with support, balance and indeed a method of propulsion. Perhaps, but I was too scared and embarrassed to try it.

This got me thinking. If I was able to reduce my energy requirements on an everyday basis by use of my walking stick, would this enable me to live more of a life? Walk further, do more? Would this be a good thing? Would this just encourage me to do more than I should? However, if I am using the same amount of energy but using it to do more surely that is a good thing? Again am I just looking for reasons to justify not using it and looking for reasons to prove my justification is ever so wrong. Perhaps the latter but I really do not know.

On Monday, still not quite having recovered from my overdoing it on Saturday, I went for a walk. A walk that included my walking stick. I deliberately kept to the back roads embarrassed by my stick. Ashamed to be seen out with it. At least this was my initial feeling. My walk to my usual churchyard seat took no longer than 6 minutes.  By the time I arrived, I was beginning to get the feeling that it was helping me. I should have been more tired by the walk given my energy levels. My legs should have begun to feel more pain but they were no worse than when I left. Was this the benefit of the walking stick or was it simply that I had under-estimated my energy levels and over-estimated my pain levels?

On my return, I walked back a different route, a route that touched the sides of busy roads, a road where there were pedestrians: people to see me and possibly make comments and wonder why a girl in her mid 30s was using a walking stick. I was very aware of everyone who passed, straining to hear them comment amongst themselves about me. Perhaps I was lucky or perhaps people just didn’t notice or care but I did not hear what I strained for. Silence.

Today Tuesday, the next day, I have tried again. This time walking further than yesterday. Again I didn’t struggle or feel my energy diminishing too quickly. This time I was aware as I crossed rocky ground that it was given me support and helping me balance. With my walking stick it was easier than it would have been without!

20140429-094815.jpgI am still a walking stick virgin however. I still hold it wrong at times and have to adjust it. I dropped it crossing the road until I remember to twist its string around my wrist so it wouldn’t fall. At times I don’t quite get the propulsion right and it lands on the ground at an odd angle. I haven’t learnt how to balance it when I sit down. I also haven’t learnt how to accept that it might be useful to me.

 

How can a walking stick be useful to a girl in her mid 30s who can walk for just over a mile (with a break half way)? How can a walking stick be useful to a girl in her mid 30s who doesn’t walk with a limp or need to balance against things? That is unless I am having a bad day.

For me using a walking stick is still a big experiment. Will I continue to use it? I don’t know – I hope I will if it consistently helps me. Will I tell my husband? I guess I have to. What will he think? I don’t know but I know he will at least wear a mask of support. I think he will think that if I am finding it useful then it is a great thing to do. I wonder whether he will find it embarrassing to be seen with me? Could I blame him if he didn’t? Hardly, I am not exactly embarrassment free at all of this, now am I?

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Gillian above (with her own walking stick) – my inspiration while I was sick and a never-ending source of support. She would have given me a right telling off if she had known I had a stick and wasn’t using it!

My friend, Gillian, was the first and only person I have ever discussed using a walking stick with. She uses one herself and even offered to lend me one of hers to try it out. I was embarrassed by the conversation – I think perhaps by the very need to have it in the first place. She was supportive and encouraging. She too was young and understood what it felt like to start to use one – she had started to use hers at 18! Her encouragement enabled me to at least buy one. I would like to think that one day I will be as brave as her and see only the positive reasons for using a walking stick. The negative reasons are surely just a matter of perception.

So I did eventually tell my husband who completely unsurprisingly was utterly supportive of me! 

I didn’t use it all the time but I always had it on me ready to pull out when things got difficult and I used it all day on a bad day. A walking stick categorically helped me! A month or so after I started to use it, I was re-diagnosed and given treatment that enabled me to make rapid improvement – very quickly after this the walking stick was no longer required. 

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In hindsight, I can only wonder why I made such a big deal about using one! Nobody looked at me funny, nobody laughed and in truth I don’t think any strangers actually cared. I should have used the inspiration of Gillian more – she is a girl who just gets on with things and doesn’t allow fear or worry stop her. Perhaps although I am now living in India and while not healthy, a lot healthier, this blog should act as a reminder that sometimes to be strong you need to accept your weaknesses and not let them hold you back.

The Half-blood Prince

Last week, one of my amazing students guest blogged on this site. Her poem, about her father who she feels does not care and doesn’t want to spend time with her, got an amazing reaction. More people started following my blog in one day than have ever done; more people liked the blog than any other blog. People posted amazing comments here and on other site1_30032010-07-Julia-Bowman-siblings-at-whitman-webs where it was posted. How amazing that a 12 year old was able to sit back and realise how much people appreciated her words!

Well as promised, here is the second instalment. Also about split families but from a very different perspective. This wonderful student just quietly gets on with school and one would never know the deep thoughts that are inside – thoughts he does not often share. 

The lesson I have learnt from this two-part experiment into giving students the freedom to express whatever is in their heads – is that – perhaps I need to do it more often. Perhaps, young people need to be given the chance to just release everything that is inside in them. We have such high expectations of young people: behaviourally, academically, emotionally – perhaps giving young people the time to vent all the worries and concerns that such expectations bring is not only healthy for them but healthy for us. Giving adults the chance to recognise just how capable young people are but also just how fragile and contrastingly strong they can be. 

My Life As  A Sibling

As many people may know I have a brother and a sister but you may have never known that they were half brother and sister.

Wow I kind of feel awkward about talking about this but I feel that this is a subject I feel that I may need to express more (talk more about than keeping in my thoughts all the time.)

I feel a little lonely to know I have a half brother and sister because they have each other but I don’t really have that interaction with them since we live so far apart. Sometimes (leaves the computer to express feelings a bit) just sometimes I feel that they don’t even exist as a half or actually a brother or sister.

I can’t even believe that I’m actually expressing my real emotion towards this and that’s a lot of confusion and a little bit of frustration. The reason for this… wow I’m sorry but this is a lot for me to say because, because, because I feel like I don’t even exist to them half the time because I rarely see them (which means the life to me sometimes) I still feel that I’m the odd one out or the one that’s different to the others.

Wow I can’t believe I haven’t gone away from the computer yet but I kind of feel proud that I can say, I may not have a brother or sister but at least they are related to me (a half brother and sister). So where I get most emotional is when they come up then they go, I feel that it’s like my favourite thing or toy or person hassiblings_logo_by_rusc_14-d3c7acu drifted away from me and all I think about is that I wish they were still with me but alas that will never happen which makes me so distraught.

I hope that one day, one day that we will be reunited as a full blood family (they will be no longer half but a full brother and a full sister.) Anyway, back to what I really wanted to talk about- how it feels to be the youngest of the 3 and also how my life is an only child almost all the time. Being the youngest of 3 is quite cool but it means that I will be the last to finish school which might be good because my sister said when she finishes school she might give me her revision book which I thought was really nice of her. I’ve sometimes looked up to both my siblings to think wow this is what I’m going to be like some day and how cool it is to have such generous family.

Ok, now I think is best to talk about the real thing I wanted to clarify with everyone out there – my life would never be the same without my brother and sister, sure they aren’t around that much but they care about me and I care about them. I think that this is the thing that matters the most in our little trio. So if I never had my brother and sister to be there for me and encourage me, I don’t think that I would get anywhere and I mean anywhere in life

Please like, share and comment on this blog. Give the brave young man who wrote this the chance to also feel that sense of accomplishment that comes from lots of views, lots of likes and lots of comments. Let’s show him that he too is worthy of people’s time and attention. 

Inspiration Where the Daily Mail Says There’s None

In my last blog, I said I would share some inspirational writing from 12 year olds that I teach. 

Under the new English National Curriculum, introduced this year, a new rather vague requirement is that children should be taught to ‘Write for Pleasure’. Now one has to question the concept that it is possible to teach somebody to write for pleasure. Sure, I can teach them grammar and spelling and extend their vocabulary. Sure, I can introduce them to inspiring authors. Sure, I can give them the space (in a curriculum that doesn’t really lend itself to space!?!?) to give them the time to write. Surely however, it is impossible to teach a child to write for pleasure.

In my attempt to investigate whether this was possible, I set as an experiment a writing task for my middle ability Year 8 students (aged 12 – 13). I told them they could write about anything, in any style, in any format and there were no length restrictions (i.e. it couldn’t be too long or short). I was a little dubious as to what I would receive.

Lesson One then for me is to never underestimate my students. They may still be children but they think deeply. They may still be children but they often crave an outlet for their thoughts; a safe environment where they can say what they like and know they won’t be criticised. Of course, some saw it as a great excuse for scribbling down a few hasty, unthought through lines, knowing full well there was nothing I could do or say to them about it. Most, on the other hand, put all they had into it. The results were heart-warming, heart-breaking, thought provoking, intelligent, wise.

Lesson Two therefore – just because somebody is young – part of the ‘barbaric horde’ (if you believe the Daily Mail) – this doesn’t mean they have nothing to say that is worthwhile listening to. Perhaps if we listened more to young people and less to the jaded politicians or the drama queens of tabloid newspapers, we would realise that young people are a stand up bunch of citizens that should not be tarred with the sam20140719-095038-35438347.jpge brush just because some decide to do stupid things. Would you call me a yob just because somebody 200 miles away (of a similar age) broke into a house? No, so why should we do that to young people.

The poem below was written by a lovely young woman about her difficult relationship with her father who she doesn’t see very often. You could question why these would be on my blog but my blog seems to have become a source of inspiration for many and a source of motivation. The piece of work below and of the student I will publish next week – do just that. For me, they put many of my worries and concerns into perspective. They help me to realise that while things can be difficult, I am lucky to have my wonderful supportive family. I am lucky that I never have to question whether I have their trust and love.

What’s Bothering Me?

Last night I got a text from my dad,

Not often does he text so I knew it was bad.

It contained the harshest thing I had ever seen.

I am cancelling when I am supposed to see you.’

See his children, not too keen,

I cried and I cried,

To all the goodbyes.

Never before had I witnessed this.

He is like an evil snake with a charming kiss.

I saw him last a year ago

Since then we have gone from friend to foe.

For some reason I can’t get over the fact

That his family orientated skills have lacked.

Dealing with this is not easy

Sometimes I just want to be free like a bee.

I carry on reading, reading, reading.

If I was bleeding, if I was needing,

I don’t think he would care.

Some of you may think, aw no

But don’t worry, it’s not rare.

I still wonder why.

But till now all I can do is cry, cry and cry.

Lesson Three Her poem is a reminder to me that in my day to day job, I can provide students such as this with a sense of security and continuity. No matter what happens at home, staff in school / rules in school / behaviour in school will be consistent. I can provide the confidence that no matter how difficult a child might make it for me, I will not back down. I will not refuse to give them my support and my care. In reality of course, no matter what it sometimes seems, no child is deliberately difficult – life has been made difficult for them and they react as they have been shown how to best.

Although not a parent, if I was – I hope this poem would remind me that no matter how difficult things get for me; no matter how challenging my relationship with my child or those in their life get – walking away from my child is probably the wrong thing to do. A child needs to feel love – that is really all they want – they just want to be loved unconditionally. Children can survive abandonment and mistreatment but few survive without battle scars that stay with them the rest of their life.

M.E. patients rightly cry out to their friends and family not to abandon them – young people have a need that is no different.

It would be wonderful to know what you thought of this poem. It would be amazing if the author (a 12 year old girl) could know what you think. How does it make you feel? What does it make you reflect on? What might it make you want to change in your life? 

Please also share this blog. Can you imagine how she will feel if she knows people thought her poem was worthy of being shared by others!??

Officially, I Am Back to Work Full-Time!

As of today, I am no longer on sick leave. I am officially 100% back to work!

While it is a relief to know that I can fall of my bike and break a leg and still get sick pay for the few weeks it takes to be able to drive again, it is more a relief to know that surely today signals not the end of my illness but certainly an auspicious moment on my road to recovery.

It is hard to believe that it was only November 2013 when I was struck down by an illness that was initially and perhaps ultimately unexplainable. Suddenly, all that I knew – all that defined me was gone! A little dramatic perhaps but certainly true.

The discovery last August that my greatest problem appeared to be my breathing and not M.E. (as previously thought) was understandably a massive relief. My rapid improvement from that day forward has been exhilarating. To do the things I used to do and to discover new things that I can now do is life fulfilling. I can now say that I can walk 11 miles (with 2 pub stops on route), I can Husky Mush (beginner style), I can do Kinesis and I am learning Yoga; this is fantastic.

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All of life’s experiences are perhaps not worthless but certainly less rewarding if you can’t say that you have learnt from them. So what, pray tell, have I learnt over the last 18 months:

  1. I was extremely lucky: lucky that I didn’t have M.E.; lucky I had a friend who made medical recommendations; lucky I had a specialist who was willing to question the accepted ‘truth’ that I had M.E.; lucky that I won’t be sick for the rest of my life. I am simply lucky.
  2. I am more determined and stronger than I ever imagined I could be.
  3. Being determined to do something, sometimes largely consists of admitting you need help.
  4. If I could deal with this illness, I can deal with anything my future throws me.
  5. Life is for living and not for passing through.
  6. Doing ordinary everyday things should be seen with as much joy and excitement as more unusual things are.
  7. Friendships and family are crucial to my emotional and ultimately my physical health.
  8. I have an incredibly powerful friendship and family support network.
  9. You are not brave when you are ill; you are simply getting on with it because what other choice do you have?
  10. It is very easy to over-estimate what you are capable of on the road to recovery but it is equally easy to allow your fear of doing too much allow you to under-estimate your abilities.
  11. Work is important to my self-worth but it no longer needs to define it.
  12. Work-life balance is too often ignored: it is vital to continuing my renewed health.
  13. There are those out there being wronged by their families and friends and sadly the medical profession. Those who really suffer from M.E. are, more often than not, not given the respect and access to treatment they not only require but also deserve.

I hope I will also remember those M.E. patients who offered me such unconditional support. I hope I will not forget what they continue to suffer day to day. I hope I can continue to inspire those around me to be open to people’s illnesses and not to question people when they say they are suffering: to accept and offer unconditional support in return.

If I can remember half of these lessons, then I will emerge from this illness when I eventually completely recover (hopefully in the next 12 – 18 months) as a better person: a more fulfilled person.

This is not my final blog: I hope far from it. I will however have two guest bloggers over the next few weeks. Two students from school who wrote so personally and so inspiringly I wanted to share their words with my readers. If a 12 year old can inspire us, surely we can all do whatever we want in life, nothing can stop us. 

A Relapse – Look at How Much I Have Achieved!

The inevitable has happened, a combination of factors came into play and consequently my last few days have been quite difficult. It was not unexpected, in fact I knew towards the end that I was definitely facing a relapse.

The one thing that is guaranteed with this illness is that it will fluctuate. You can be assured that your feeling of good health will simply not last. Something will inevitably happen that causes you to go backwards. Acceptance of this makes the inevitable relapse easier to deal with. It sucks but at least you don’t feel shock.

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On Friday night, my husband and myself went out for dinner with some friends. We had some initial confusion when we got there about numbers and after sitting down had to move to another table, then some of our friends were late and we didn’t order until about forty minutes after getting there. Service was also a little slow. All told this meant that it took a much longer time than normal to get to the end of our main course. The end of a main course is always my signal to leave. Staying any longer guarantees a collapse. Unfortunately the end of the main course that night was probably 20 minutes later than I usually stay for.

On Saturday morning, I woke up a little stiffer and sorer than normal and for the first time in weeks, I felt a sense of real fatigue. I can clearly differentiate between a sense of tiredness and exhaustion and a sense of fatigue. Tiredness and exhaustion can be overcome by proper sleep, fatigue can only be dealt with by rest and time. Consequently on Saturday, I rested all day and only went for a very short walk.

Sunday morning I felt like I had bounced back. I felt energised and able to get on with life again. As a result, my husband and myself drove to Worcester. We had a very gentle walk to a coffee shop. It was clear very quickly however that I wasn’t ready for a day out so we finished our coffee and went home. By the time we got home I was exhausted.

Very sadly at that point I heard our very elderly neighbour screaming in the garden. His also elderly partner had already called the paramedics. He had had a very bad fall in the garden and his partner was deeply shocked and upset. Consequently my husband and myself spent several hours with him and the paramedics. My husband helping out the paramedic who was initially alone and I tried to calm down his partner. This was both emotionally and physically exhausting. The paramedic even asked me to go out to his car to get a neck collar for him, that was fine but his car was parked down the road. For a split second I questioned whether it was wise for me to do this but realised that in this situation I didn’t matter so I went.

My husband drove our neighbour to the hospital to see his partner. While they were gone, I collapse on the sofa and slept. On their return however our neighbour joined us for dinner. He is a great guy and was deeply in shock, we didn’t like the idea of him being alone in that state. Unfortunately (and fortunately) he stayed for two hours. By the end he was much calmer and more relaxed – objective achieved. Unfortunately for me however it meant I had to sit for two hours on a chair and went to bed about an hour later than my good day bed time.

Put all my weekend together and the inevitable result was a relapse. I spoke to my M.E. Support Worker yesterday and we both agreed that although the aim is to avoid at all costs doing too much so it leads to a relapse, there will always be a time and a place where trying to avoid doing too much is probably a bad thing. Can you imagine if I had sat in my sofa hearing an elderly gentleman screaming and saying, “No, I’m not going to help him because I have used up all my activity points today”? That would be beyond wrong.

So although yesterday and today I am far more tired than I should be and in far more pain than I have been in for a significant amount of time, I know in my heart that it doesn’t matter. We did the right thing. Anyhow as my husband said, six weeks ago even half as much activity would have lead to a collapse and he would have had to effectively carry me to bed. The next day I would have been barely able to get out of bed. There was no collapse, never got to that point. Yes, yesterday I either lay on the sofa or lay in bed but even in those circumstances I managed to walk 0.45 of a mile. That would have been simply impossible not long ago.

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So perhaps instead of looking at this relapse as something negative and scary, I should look at it as proof that I am making progress, that my body is beginning to heal itself. Yes I will have to continue to be incredibly careful about doing too much and I shall certainly not be extending any of my activities this week but I am not in as bad a state as I could have been. For that I am incredibly grateful.

There are fewer blogs at the moment because I am working on a large writing project and I must be careful with my energy expenditure!

See also my non M.E blog Me Opinionated! Really?

What Drives You?

78 days ago I started my very first ever blog, stating that 132 days earlier I had come down with a horrid cold that lead to M.E. It is now 210 days since all of this began. This will be my first month where I will not receive a full salary and I am very aware of the long road ahead. Radio 4’s Libby Purves this morning asked her guests, “what drives them?” This made me reflect on my own situation and ask the question, “what drives me? In the face of so many difficulties and so many opportunities to give up a sense of positivity and a determination to get better, what drives me to not give up?”

If I am honest, I don’t really know. I’ve never liked to be the sort of person that doesn’t do well in whatever I do. I’m also highly competitive and the idea of failing to achieve something I’ve set out to do seems very unacceptable. I am driven by a determination to get better. I don’t know when I will get better or whether in reality I will ever be truly ‘better’ but I have an internal determination to not give up.

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When I first became ill (post the cold) my doctor and I thought it would only be short-term. Then it was easy to be positive – I was not going to be sick for long and when I got better, life would thoroughly return to normal. It became clear after the first month or so that this would not be the case. I was not making progress, if anything, I was going backwards.

The challenge in those early months was the determination to learn as much as I could about this illness, educate myself to the point where I could begin to direct my own treatment, begin to take control of what was happening to me and what I needed to do to make progress.

Don’t get me wrong, there were long days and weeks where making progress or feeling hope was incredibly difficult. It seemed at times that my health was only going in one direction – down hill. I felt that it was inevitable that I would join the ranks of those where were severely ill with M.E. – housebound and more likely than not bed-bound.

Despite this sense, I still somehow managed to retain the drive to stay hopeful and try and do something about my situation. It was, however, only when I thoroughly accepted that I was seriously chronically ill that my health began to improve. For me it was the acceptance that I was very ill that made each aspect of my treatment (pacing, meditation, medication, exercise) take on a new very important role. To fail to stick rigidly (as much as one can when you have M.E.) to my treatment plan was to quite simply postpone the point when my health returned to something resembling normality. If missing a tablet would be consider medically foolish, then surely continuing to walk when I began to tire was no different.

Over the last few months, I have had a dawning realisation that this illness has given me an opportunity. I can’t exactly describe what this opportunity is, it has yet to become clear. I can’t help however feeling that my life will change utterly when I am ‘better’. I have always firmly believed in the old saying – every cloud has a silver lining. I am excited now to discover what this opportunity may be and this is helping to drive me not to give up, to stay strong and determined.

Now I also have the additional knowledge that I can reduce the impact of my illness on my life. I have had several weeks of feeling ‘well’ (at least in relative terms). So now when I have a bad day or a bad week, I know it is in me to feel better again. I have the means to do it. It helps retain a sense of hopefulness and further reinforces my sense of determination that I will get ‘better’ and I won’t give up.

I am certain that 365 days of being ill will come and I will not be ‘better’. I know that the road in front of me is incredibly long. I know I will have dark days. I will have days where I know I have done too much and will kick myself for not having stopped earlier. More importantly, I know that I will retain my drive to keep progressing and I will not give up.

See also my other non-M.E. blog – Me Opinionated! Really?

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