Tag Archives: disability

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!

 

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.

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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Family

Sometimes with this illness you are faced with challenging decisions that have a direct impact on your health. Those decisions I've noticed usually revolve around having a semblance of a 'normal' life. Sometimes the decision is easy, your health must come over everything, at other times it is more challenging.

I personally feel that having a semblance of a life is crucial to my health. Without it, I believe the slide into isolation and introspection could so easily begin. So every weekend I like to try and meet some friends for a drink at our local pub (bless them, they are happy to go out of there way to meet me somewhere local) or go for a short dinner. This has to be prepared for by a day in bed in advance and often a day in bed the next day. If done properly, there isn't such significant pay back that it no longer becomes worth it.

This weekend however I was shown just how important having a semblance of a life is. I was also shown although this illness forces me to consider it every moment of every day, life continues irrespective. It was my aunt and uncle’s 50th wedding anniversary. They were holding a big party in the New Forest in the south of England. My mum and dad flew over for the occasion. My mum, 50 years ago, had been their bridesmaid.

My aunty, although delighted that I wanted to come, was concerned as to whether it was a good idea. This, however, in my opinion is where having a semblance of a life becomes incredibly important. My husband has taught me in the years since we met just how important family is. He has taught me that being there for your family is one of the most important things you can do. So, I was not going to miss it, I didn't mind if I had to have a week in bed if it meant I could do something for my aunt and uncle that would make them feel happy.

My mum was the youngest of 12 and I have 100s of cousins (only a very slight exaggeration). My identity is greatly influenced by this huge Hogan clan. It was with great sadness therefore that we learnt that my uncle, Liam, the oldest of my mother’s brothers and sisters died unexpectedly on Friday night. My decision to go to the party suddenly became even more important. It was a hard night and day for my mum and aunt and anything I could do to support them mattered. For once, I turned off my need to pace and turned on my need to be there for them.

I don’t know if I singularly made a difference to my aunt's night. I do know her being able to look around and see her children, grandchildren and her niece (who was also bridesmaid to her daughter) will have made her happy. I am pleased that I could be part of that.

Sometimes though we are faced with challenging decisions that challenge us because it is emotionally hard to say no. My uncle will be buried today in Ireland and I couldn't even for a second consider going. It would have involved a flight, a taxi, a train, an overnight with my parents, a drive across Ireland, then the standing at the funeral, a meal with my family and then the reverse of the journey home. I would have collapsed and been a burden on my mum just when she didn't need it. I find it very sad that there was no decision to be made but I will be there for my family albeit at a distance.

So I plan, for as long as I am able, to be there for my family when it counts and when I will be able to plan in advance how I will physically do it. This will mean that I won't always be able to be there for them e.g. a funeral where I would just be a burden. I'm lucky, my extended family are just incredibly grateful for my even expressing a wish to do something, I know they will understand when I say I can't.

I keep returning to a thought that saddens me beyond words. As my husband said yesterday, it is only when you compare yourself to other families that you realise just how supportive and caring your own family is. Yet daily I read stories about M.E. patients abandoned by friends and family because they 'can't come out to play' or because it was felt they should have been there at for example a family wedding irrespective of their health.

A lady wrote yesterday on an M.E. forum that today she won't get a Mothers Day card because her daughter doesn't believe she is really ill, that she is putting M.E. on, her daughter no longer speaks to her. That saddened me so much. For surely, even if her mother was 'putting it on', her daughter no matter how hard it was should still be there for her. As somebody else said, "even mental health patients deserve respect."

So today I am incredibly grateful that despite having to make challenging decisions in relation to my family, I do not have to make them in fear that they will abandon me. This support gives me the chance I need to get back to good health.

30ish of the Hogan clan cousins!

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Mmm, really? That’s weird!

I’ve really struggled to write today. I’ve written something but I hate it so much, I can’t publish it. I don’t know why I’ve struggled so much. Which is amusing in itself, in that what I wrote was all about the weird things that have happened to me through this illness that I just don’t get. Today, however, my words are tripping over themselves and I struggle to type without countless mistakes. I don’t get it though because I woke up feeling good and refreshed for the first time since Sunday. Today, however, I can’t write!

Today, it would appear that my brain won’t establish a coherent series of words to form a sentence. Even when I can form the syntax appropriately, it appears I can’t create a sentence that flows and engages. I don’t get it.

There is so much about this illness that is weird. The one that seems to make fellow M.E. patients quite exercised is our often sudden inability to drink. I’m not talking about an inability to drink without getting embarrassingly drunk but to drink at all! Alcohol as a whole repulses me! Seriously, it’s disgusting stuff. I keep having sips of people’s drinks in the hope that it has passed but oh it is just vile stuff. Yet I can drink a gin and tonic! It appears nothing else but I can drink a gin and tonic! Not a big one and I often have to drink one over two days and certainly can’t have more than one a week but I can drink it! I don’t get that! My husband says it’s because it’s bitter but other bitter drinks slip into the vile and repulsive list so easily, he can’t be right.

I don’t have to drink, I don’t need alcohol to enjoy a night but lord a glass of wine with a friend, a cider on a sunny day how lovely! So alcohol quite easily fits into the weird and wonderful world of M.E.

My mother has laughed about how some people she knows (of course I’m not referring to her many brothers and sisters) as they get older have started to have conversations across each other and she struggles to follow them! That’s me, to have a conversation with more than a few people at a time or if there are loud conversations going on nearby, I lose track of my conversation! I struggle to hear what is being said over the noise.

It’s not like my hearing has gotten worse, oddly it’s almost like it’s improved. It’s almost like other noises become amplified around me, making it more difficult to differentiate the sounds that make up the conversation I’m involved in!

Myself and my husband were driving the other day with the radio on. A song only just started when he changed stations. I quite liked the song so understandably asked why he had been so inconsiderate! He responded with, “high pitched noises really irritate you so you will just turn the sound down!” I’ve always turned up the music in the car so loud that he asks me to turn it down, now it appears I often turn it down so low he can’t hear it. Why? No idea! It’s just another weird symptom in a list of weird symptoms.

Have you ever noticed just how colourful our world is? Have you noticed how bright and cheerful it is? Have you noticed just how attractive shops are? I have. Recently, I can’t but notice how bright and cheerful everything is. How on some days I can cope with it and on other days it makes me feel instantly dizzy, gives me instant headaches and makes me feel thoroughly exhausted. My eyes flick from colour to colour, my eyes become bombarded by lots of messages and I seem to not be able to compute it all into something logical and enjoyable!

Golly, don’t I sound like an old,lady, “oh these modern shops, it’s so hard to work out where to go and what’s in the shop!” Can you imagine what I would say if they let me lose in a nursery school at pick up time – imagine the screaming children, the nattering parents, the bright cheerful educational posters and toys – ohh!

I find I write best in bed, first thing in the morning with the curtains closed. I believe that’s because it reduces the impact on my senses, allowing me to focus all my senses and energy on writing rather than having my energy diluted by other stimulants. It’s an odd one. Why do light and colour affect me so and why does their impact on me fluctuate so much?

There are lots of weird elements to this illness. Not least among them is why do random parts of my body suddenly and for a varying length of time feel sore to the touch. My doctor does have a name for the soreness but I don’t recall it. Some mornings I’ll wake up fine and then suddenly my knee will be so sore to the touch that the duvet is uncomfortable. An hour later it will be gone. On the other hand, the soreness can build up slowly. Yesterday all day my arm was internally getting sorer, by the afternoon it was externally sore to touch, by the evening I could barely hold it up and it was extremely sore to the touch. However, it didn’t keep me awake and today it is fine. I don’t understand why – I’m guessing it’s the neurological elements.

Lambing Live! Now that’s a weird part of my illness. For those not from the UK it is a wonderful programme that does exactly what it says on the tin. It shows lambing live! Why is it a weird part of my illness? It makes me cry! Ahh it’s not just the sweet little lambs, it’s not even the sweet little lambs that die but it’s the unflinching commitment of the farmers, it’s the way they tickle a lamb absentmindedly whilst being interviewed. Apparently easy crying is definitely a neurological element so don’t accuse me of going soft or anything!

So my world is constantly full of weird symptoms, some come and go. Some come and take up residency rights. I think people can get feeling fatigued (we’ve all had an horrendous cold) though perhaps not constant fatigue. I think we can all get pain (we’ve all broken something or some how ended up in pain) though perhaps not constant pain. I don’t think people would so easily realise the other symptoms or indeed perhaps get them.

Once again, I never intend to moan or sound pessimistic. I’ve actually shocked myself about how positive I am overall. I’m not saying I don’t ever find it hard – of course I do, I’m human, however generally it doesn’t get me down. I just want to write so that others understand my illness and my situation better. Rather high-mindedly, I’d love if my words resulted in people getting how somebody they know who suffers from M.E. might be feeling.

So today I shall wait intrigued as to what weirdness my body will throw at me – if indeed anything!

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Unadulterated Relief

As a teacher I have spent my career trying to instil in students a sense of the importance of respect: respect for each other, themselves and the world around them. I try and teach them that respect does not have to be earned. They should assume that everyone deserves respect from the off. If they live this way, then nobody will feel ill treated by them and respect should come back their way.

Since becoming ill, I have had to consider whether reality matches the ideal that I preach daily. Unfortunately, not everyone understands this basic human right of respect. Today’s blog is not meant to be a moan however but a celebration.

Yesterday I cried, I cried and I cried and I cried. The sort of hysterical tears that you can’t control as much as you want to. For once these were not tears of frustration, pain or anger but of sheer unadulterated relief.

Relief that somebody who understood M.E. deeply had shown me some respect. As always with this illness you have to go it alone, you can’t just sit back and assume the medical profession will guide you appropriately. In my search for my right to informed, respectful medical treatment I came across the National M.E. Centre. A charity that offers a free support service to patients suffering from M.E.

Yesterday Sue, a support worker, called. It took a few minutes to lower my defensive guard, a guard being built up by the lack of understanding about what is wrong with me by those in the medical profession. I don’t doubt those I have come across so far mean well (though maybe not idiot consultant) but I always fear that a lack of understanding could led them to suggest inappropriate treatment. Her specific questioning, the time she took to listen to my responses and clarify what I said forced this guard to just fall away.

She was kind, caring, realistic, human. More importantly she understood. I have never doubted that I have M.E. – I can tick off most symptoms on the list. It is only when somebody who truly understands the illness says you have it, that you can be sure. This was a relief in itself.

Not everything she said was good, there are realities to face that I didn’t realise I had to. She made me trust her however and this trust means I don’t have to face these realities alone. She is sending me information and will call again in two weeks to support me further. The knowledge that there is now somebody out there who gets it, who has lots of experience with M.E. gives me hope, hope that with their guidance I can begin to make progress, I can begin to stabilise and find a way through the myriad of symptoms and potential treatments.

Far beyond her practical suggestions, her caring yet professional support is what has filled me with this hope. Little does she realise that she has also brought relief to my husband and my parents. They have been desperately searching for a way forward for me. While I am not foolish enough to think that there is now a guarantee I will get better and get the service I need, there is at least someone there who understands.

Now I feel my fight for access to a pain clinic, a proper M.E. consultant and an occupational therapist is backed up by somebody’s professional opinion. I will still have to fight and there is no guarantee I will get to see any of these but at least I know I am fighting for something worthwhile.

So today my positive thought is – having experienced the deeply emotional impact of being respected yesterday, today I must ensure that I don’t judge people, until I know them. I must respect the fact that I don’t know what makes them the way they are. Equally, I must fight for the rights of others to be respected. It appears just a tiny bit of genuine respect can have a far greater impact than I have ever realised.

The National M.E. Centre

You can also make a donation

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Friends and Family: Learning to be Ill

I have always been a very sociable person. Not in the sense of I have a 100 best friends who I couldn’t live without. Not in the sense of loving to go clubbing until dawn every weekend (in my early twenties definitely but not in the last ten years or so). I am sociable in the sense that I need to interact with people. I need to sit and chat, debate, discuss, laugh with people. I think I would struggle to live in a world where I never saw anyone but myself and my husband.

My world has narrowed considerably over the last number of months. I no longer work so that social interaction has disappeared. I do still try and meet friends at the weekend but usually for no more than 40mins (although I managed 90mins yesterday!). My neighbours are all quite old and don’t really socialise, at least not with me. My closest friends live many hours away from me. My family live in Ireland and my in-laws live many hours away as well. So my world has narrowed considerably although not quite to it just being my husband and myself.

What I have noticed though in myself is an increasing awareness about what others might think of me. Most of the time it is irrelevant. When I’m hanging off a wall because I’m too tired to keep walking, I don’t really care if people think I’m drunk or crazy. I do wish they would ask if I’m okay though, there have been days where I hoped somebody would help me walk the last couple of minutes home. Strangers can think what they like.

The thing that really matters is how your friends and family interact with you. This has been done before but I thought my audience included people with no knowledge of M.E. so I too should include this important information: the dos and don’ts of interacting with me as a friend or family member.*

Let’s start with the Don’ts

1. Don’t tell me just because I look good the day you see me, “you look so much healthier, isn’t it great you’re getting better!” It’s not that I don’t want that to happen but if you don’t know the full story, you don’t know what I’ve had to do to look so good that day – slept all day in preparation, rested repeatedly whilst doing my make-up. It annoys me because it makes me feel you are belittling a genuine biological illness. I know you don’t mean to but it’s how I feel.

2. Don’t make parallels between myself and somebody who has ‘recovered’ unless you genuinely understand my illness and theirs. Unless you know the full picture and tell me it, how can I really be inspired by it?

3. After talking to me about how I’ve had to reduced my activities substantially just to get by, don’t tell me that you know x inspirational person who has M.E. but they have children or a job (which you don’t) and have to push on through and they’re doing well. Pushing on through will delay my remission and you don’t know their full picture, you don’t know what they have to do to appear to ‘push on through’ successfully!

4. Don’t ignore me, I know you sometimes don’t know what to say because you don’t understand what’s wrong. That’s okay, I still don’t thoroughly understand what is going on so how can I expect you to?

5. Don’t remain ignorant of M.E., do a little bit of research. You won’t truly understand my day to day life but at least you’ll get an inkling.

6. Don’t suggest that I’m lazy. Think about it, was I lazy before this began?

7. Don’t be afraid to ask me lots of details about what is wrong. If it helps you to understand and to give me support, why would that be problem?

8. Don’t be upset or annoyed if I cut our meeting short. I really appreciate that you may have gone out of your way to meet me. I really appreciate that you assumed we’d spend more time together. Understand though that if we do, I will become quite ill and pay for it later.

9. Don’t offer me advice unless it is thoroughly researched. I know more about this illness than you do. You don’t recover from this in the same way as other Chronic Fatigue illnesses. I find it upsetting that you think there is an easy answer that would have made me better already.

10. Don’t pressurise me into exercise or try and get me to be more active. Being more active unless very carefully managed can make me very ill. I know you’re used to an increase in exercise levels being crucial to somebody’s improving health. It’s not the case for us.

11. Don’t tell me that you know what it is like to be as tired as I am because you’ve had a long day at work. Be honest, you don’t know what it is like unless you suffer from a chronic debilitating fatigue related illness. I don’t want to undermine your sense of being exhausted and I don’t mind you saying you’re exhausted but don’t say everyday tiredness is the same as my fatigue!

The Dos

1. Do assume I’m telling you the truth about my illness. Think about the type of person I was before I got ill – am I really crazy or lazy?

2. Do assume I need more support than I say. Offer to help around the house or simply offer to make the tea when you visit. It is then my choice to take you up on that. Understand though my sense of dignity makes me hate to accept help. Keep asking though, I’ve noticed that my sense of dignity doesn’t care so much anymore.

3. Watch how I look, if I start to go pale, lose words, seem to lose focus, tell me. Ask if I would like you to go as I look like I’m getting tired. That way you don’t just leave making me feel that I’ve done something wrong also you might be making me aware of my increasing tiredness that I’ve not noticed because I’m really enjoying your company.

4.If you’ve done lots of research into M.E. and have had long conversations with me about how I experience the illness, do share what you’ve learnt. We more or less have to deal with this illness alone without medical support. Why shouldn’t you discover the thing that will help me if you know as much as I do about the illness?

5. Do offer me your non-judgemental comfort through your words, actions or touch.

6. Do try and make arrangements to see me in a way that you think will make it as easy as possible for me. Ask me if these arrangements are okay. I hate to have to ask someone to change what they’ve planned because I can’t cope with it. I’d prefer to tell you we don’t have to do coffee at home, instead we can walk into town together. I will really appreciate you trying to make life easier for me.

7.Do stick by me, I hope to not always be like this even though I might. I may not always be an easy friend to have but I will always try and be your friend.

As a teacher I always try and show children that life is not only about rights but ALSO responsibilities so this is what I need to try and do.

My dos and don’ts

1. Don’t get upset by what people say unless I consider first whether it was meant nastily or just said through ignorance.

2. Do ask for help when needed.

3. Do accept that some people (such as my husband) know me better that I do and I should accept that they often know what I should do before I do.

4. Try not to let every conversation be about my illness. I know it’s the only thing that really matters in my life anymore but it’s easy for other people to get sick of a one track conversation. Equally, it’s not good for me to only think about one thing.

5. Do accept that people’s lives go on without me and their failure to keep in contact with me, although upsetting, may not be because they have forgotten about me but because they have full lives that have to go on in my absence.

6. Don’t always assume that my friends should contact me. I know I worry about being a burden to them and they may not want to speak to me but I won’t know that until I try. Friendship is a two way street after all.

7. Do accept that my friends and families don’t mind if you cry on their shoulders and rant at them about the medical profession. They are my friends and family after all. Also accept that if I never share the negative things then they will worry that I’m hiding the things that worry me. This will worry them!

My best friend, Sarah said the other day that I have to ‘learn to be ill’. Sarah was ill for much of her life and so knows what she’s talking about. Our friends and families need to also learn how to cope with having an ill person in their lives.

When you were in school did you find every subject as easy? Did all the students learn at the same rate? Of course they didn’t, as long as our friends and family are learning how to cope, we have to be patient. Is this not just part of our learning to be ill too?

* this is my viewpoint, others may thoroughly disagree based on their own personal experience, illness or understanding.

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Nobody’s Children Adopted?

If you haven’t read yesterday’s blog, you might want to read it (below) before reading this one.

Yesterday after publishing ‘Nobody’s Children’ I received an amusing (but accurate) email from a family friend, Victor. I’ve always called him my adopted Daddy and I think he is quite upset by the lack of understanding of and treatment for M.E.

His email:
I read about your latest NHS encounter, became emotionally involved, defensively I then switched to analytical mode and came up with this:

That UUP ‘Specialist’ you met deserves almost as much sympathy as you do. Put yourself in his position! There he was, all full of confidence in his knowledge and expertise in his speciality, framed certificate on the wall to prove it all and suddenly, OOOOPS! He is confronted with something he knows absolutely nothing about; your ME.

Like a plumber dispatched on an emergency call-out who finds himself being expected to deal with a house-owner’s heart attack. Any average plumber will have the wisdom and good manners to declare his ignorance of the coronary technology required, decline the job and pass on the responsibility to someone better qualified. That was an attitude regrettably absent during your consultation, although vast, reverberating, dark caverns of slimy ignorance were clearly in evidence.

But the really BIG mistake was not made by the unfortunate ‘Specialist.’ He was clearly Unfit for Purpose in the circumstances, exactly like the plumber who was sent to the wrong address. But that wasn’t the plumber’s fault. BLAME the DISPATCHER or matchmaker or computer operator or whoever else it may have been who arranged for you to meet THE WRONG PERSON who happened to be UUP (UTTERLY UNFIT for PURPOSE).

If the matchmaker/ dispatcher doesn’t know the difference between ME and a JCB, and gleefully clicks selection boxes on a computer screen that ensures a balanced workload for all classes of medic, regardless of suitability, surely that is the area that needs urgent attention in the NHS?

My reply
Oops! I am the UUP!!! Nobody could tell me who to see so I worked out who was closest to me!!!

His response
Rubbish! How can YOU be the UUP? The system failed you, so you tried to DIY. Good on ya!

It made me think, that ultimately until we understand enough about what causes M.E. and importantly this information begins to trickle down to the doctors (though ideally in a well-structured, efficient education program for GPs, physios, occupational health, consultants, nutritionists, psychologists and psychiatrists amongst others) there will remain only a few specialists out there who are FPs (Fit for Purpose).

Stanford, March 19th 2014, may well have seen history made for ME/CFS patients. An international symposium of M.E. experts yesterday presented to a standing room only audience the key findings of a wide range of studies. These finally make it possible, that with just a little further research, an understanding of causes and treatments will be found.

ME/CFS is a multi-system disease, it is far more complex than many diseases out there. This is reflected in the wide range of papers presented yesterday.
1. Daily fluctuations of Cytokines
2. Gene expressions
3. Cardiovascular Aging
4. MRI findings
5. EEG studies
6. Medical care of patients
7. Inflammatory and Autoimmune profile
8. Microbial diagnostics and discovery

A wonderful man, Cort Johnson, a journalist who has set up various high profile M.E. websites (e.g. Phoenix Rising / Health Rising) and an M.E. patient himself for 30 years, spent 5 hours Tweeting the key findings as they were presented.

I am no medical expert and I struggled to follow much of what was said but I do understand people’s reactions to this event and more importantly those of the real experts (the FPs). Through his Tweets the ground breaking nature of this symposium became incredibly clear. Phrases such as, ‘high hopes’, ‘convinced that inflammation is the key’, ‘ME/CFS is the last big disease to make your name in’, ‘it is an inflammatory disorder’, ‘the most amazing MRI presentation I’ve ever seen’, ‘a very strong result’, ‘bingo’, ‘ME/CFS is going to teach us so much about the brain’, ‘landmark study’, ‘staggering results’, ‘ME/CFS is not a psychosomatic disorder’, ‘sense of urgency’.

Various presentations also mentioned how many of their research programmes were ongoing and expected exciting results in the next few months. Many mentioned that they thought that soon there would be a real understanding of its causes and even possible treatments. Many, however, also mentioned how lack of funding made it a struggle to do.

How many out there, if they have heard of ME/CFS would say, “oh, you mean like Yuppie Flu”? The media has spent decades (largely dating from the 1960s-70s) stigmatising M.E. The psychiatrists colonised it for their own end, accusing the patients of being depressed or crazy or the like, based on little or no empirical evidence. If you can’t explain it in empirically, then it must be in your head theory.

The people who knew this stigmatising was wrong were in the weakest of positions to fight back. I currently could probably walk for 10 mins at a push and I am healthier than some so how do we march in protest? How do we force ourselves onto Talk Shows and into government offices until somebody will listen? The answer, most of us can’t, at least not very easily. So we depend upon the healthier amongst us and people who have never had this illness to fight for us. We are not an ‘attractive’ illness however, we are the ugly girl at the party that the other girls won’t play with. We come with a false stigmatism, a deep misunderstanding among many in the medical profession. We are not the go to research area. We are not glamorous and apparently groundbreaking enough. (Seriously is the above not groundbreaking?!)

Which group experiences on average more pain? M.E. patients, spinal cord injury patients, patients with chronic pelvic pain or muscular dystrophy patients? Wrong – an M.E. patient. Would the public be happy to ignore those other ailments, would they allow those patients to be told “it’s in your head” – good god no! They’ve worked out causes for the other illness, they have empirical data. Well so do we – almost.

The latest fad on Facebook is the makeup less selfie for cancer. As my friend put it, that doesn’t do much good, raise money instead. While I am in total agreement with her, how easily could I get thousands of people doing the same thing for M.E.? How many schools would have non-uniform days for M.E.? Like I said, we are the ugly girl at the party.

So what can we do – we from our beds can do little but use our words to fight for our corner. Others, friends, carers etc can do more. Help us to be adopted so that we are no longer Nobody’s Children.

I have listed below organisations you can make donations to, mainly UK based. As this blog is read around the world, if you know of others let me know.

Do something so that M.E. patients no longer cost the US in earning and spending losses alone, $18-51billion (£11-30b) a year and the UK, £102 million ($168m). M.E. patients tend to be the strivers, the driven, the ambitious. Do something so their intellectual wealth can benefit your country.

UK
Invest in M.E.
Walk for Me – raise money by doing a sponsored walk for me
Biobank – researching a cure for M.E. London School of Hygiene and Tropical Medicine

US

Donate to Stanford ME/CFS research

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Nobody’s Children

Many years ago when my husband was in the army and he was yet to be my husband and still only my live in boyfriend, he was instructed to move camp. As part of moving camp they would pay for a moving company to come in, pack up HIS house and move HIM to Dorset. They would move up to one large lorry.

On discovering however that he lived with someone and was unmarried, they refused to move US. This was despite our combined flat contents being significantly under the capacity they were prepared to move for HIM alone.

He spent many hours trawling through the army regulations and discovered that as long as our contents was not over his individual capacity (rather than married couple capacity) then they had to move us! I remember at the time we thought how if you didn’t have the education, the time or confidence to investigate then you would have to pay for the move yourself. We discussed how the system had the power to make an individual’s life excessively difficult.

I always find this upsetting when society limits somebody’s abilities purely because ‘it’s the system!’ I felt this way again yesterday. I consider myself incredibly strong willed, confident and able to defend myself. I cried yesterday however because I felt so abandoned by the NHS system.

Having waited 3 months to see an ‘M.E. consultant’ (notice the inverted commas – he was an Infectious Disease specialist), I finally went to see him yesterday. I wasn’t expecting miracles, just guidance and support. I wanted to make sure that what I was doing was the right thing and guidance on where to go from here. I wanted him to perhaps suggest, based on the severity or not of my symptoms, what my possibly timeline was.

I walked away from the appointment in floods of tears, barely able to stand due to sheer exhaustion and stress. I have never felt this way before and I am strong.

I won’t go into too many details (check out any M.E. forum if you want to know how horrible these appointments can be!). Suffice to say he never asked me about my symptoms, I had to shove them in his face, pointing out my symptoms record (this appeared to be highly bemusing to him).

He seemed to focus on my stress levels (clearly thinking I was depressed or such like!). He informed me I should have gone back to work earlier although I had been trying to tell him some days I could barely get out of bed, I couldn’t drive and I found ‘easy’ socialising for more than a half hour exhausting.

I walked away with no idea whether my system of pacing was any good, no idea how to build up my activity level, no idea how to deal with my pain levels. When I requested this information he spoke in generalities. Speaking to my husband afterwards, we both felt that he didn’t know the answers and was trying to get rid of me.

What upset me most afterwards was what I felt was his total rejection of my right to treatment and support. I pay his salary through my taxes so theoretically he works for me. I have the right to go to an appointment and be treated with respect.

Imagine though that you were not me. Imagine that you had to travel there on your own by public transport for an hour because you had no one to bring you. Imagine you didn’t have the self-confidence to say to yourself, ‘he’s an idiot, you are ill and you need to ignore what he says.’ Imagine if you as a result of your meeting assume that you’re not as bad as you thought so you return to work (driving) and ‘get on with your life as normally as possible’. The consequences of not standing up for yourself have the potential to do serious damage to you not only physically but emotionally.

The lack of specialist M.E. centres in the UK and the lack of a _ist specialism for M.E. means that patients see Infectious Disease specialists, Rheumatologists and Neurologists. There are many of these specialists out there who are great, on the other hand if you read the forums many of them lack the specific knowledge to provide sufficient support.

The lack of empirical evidence of the illness through run of the mill blood tests seem to result in some doctors not knowing what to do. This leaves patients alone, trying to work out how to deal with things themselves without qualified support. Somebody called M.E. patients ‘nobody’s children’. Nobody wants us and nobody can support us.

I have made an appointment with my GP and I will be requesting a referral to one of the M.E. services recommended by other M.E. patients. Would I have done this if I wasn’t able to have such a ‘screw you’ attitude? Is this an example of society favouring the emotionally and indeed financially strong (none of these clinics are local and may even require a hotel stay)? I think so and it upsets me.

I’m in a good situation where I am likely to recover as my support network is so strong. Those without this network daily have to go beyond the energy thresholds just to survive. These are the people who need the support of professionals most and these are the people who may not be able to add a fight for decent service to their energy expenditure. This upsets me.

Update: I have spoken to my GP. She thought my treatment was bad as well. She is going to refer me to a pain clinic and is going to try and refer me to an M.E. Clinic of my choice. Somebody in the NHS is good!

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