Tag Archives: CFS

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!

 

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.

Breathing New Life into an Old Dog

This, I am afraid, is a long one!

It is easy to be tempted to jump at every solution or diagnosis doctors or patients throw at you when you are very ill. However, it is also just as easy to assume that whatever diagnosis or solution thrown at you is wrong.

As those who regularly read my blog know, just under a month ago I received a re-diagnosis from M.E. to Dysfunctional Breathing Syndrome with secondary Fibromyalgia. When I released this information to the world, it was met with a mix of hope without fear of potential disappointment and dire warnings of the dangers of believing a word of what the doctor had told me. Some were absolutely sure that this meant that very shortly I would be 100% well. The other side thoroughly believed that the treatment I would now receive was going to doom me to rapidly worsening ill-health if not permanent disability.

I had to find myself somewhere in the middle. Not willing to accept that this now meant there was hope of 100% recovery but equally not willing to believe that a specialist with many years of experience could be completely wrong. Over the last month, I have wafted from total belief in my recovery to total disbelief. Now, I believe I find myself in the sweet spot: determined to do what I can to improve my health but keeping a wary eye out for danger signs that might lead to the doomsday scenario suggested by some of my readers. Accepting this opens you to both hope and disappointment, often at the same time.

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After my last blog, I was contacted by somebody from Phoenix Rising – a respected M.E. forum and advocator for M.E. patients’ rights. They asked me if I would continue to blog my experiences, as patients needed to know whether there were other potential treatment options out there and what might happen if they too traversed my current road. There is no question in my mind of the importance of doing this.

When I was very ill, the very lack of positive stories: the stories of those that had made significant steps towards recovery or even complete recovery, made it very hard to keep a grasp on hope. Those who blog or post on forums tend to be those who are still very ill, many of whom will have been ill for decades.

Those who recover understandably tend to move on and do not leave behind the story of how they got there. While my story may not be a story of total recovery (yet), at the very least it is now a story about how improved health can happen quickly under the right circumstances. I plan to continue blogging into what I now hope will be full health and indeed beyond. I hope I can find a way to provide just a little bit of hope to those that might need it.

My health has improved significantly over the last number of weeks. It has improved at a rate that has surprised and shocked me. The changes have been incredible.

My parents, husband and many others have told me how my voice has changed, that I’m beginning to sound like the old bubbly Karen they once knew. I can hear that in myself. I can feel that less energy is needed simply for the process of conversing with somebody.

A day tires me out but rarely does it fatigue me. Until I became ill, I would never have been able to define the difference between fatigue and tiredness. The difference is stark. Tiredness can be dealt with by sleep, fatigue remains largely unaffected by sleep, no matter how many hours you lie there.

I have discovered a new problem – although I must still pace and rest regularly, my day is now so filled with walking, yoga, swimming, driving and socialising that I struggle to find time to do the things that filled my day when I was just too ill to leave the house. Things I learnt to enjoy – writing being a primary example. While previously I would spend at least 2 hours a day writing, now I struggle to fit in more than that a week. It is regularly planned into my day but just as regularly is planned out by an unexpected request from a friend to meet for lunch or the fact that it is a sunny day and I want to do a little gardening. My life is now fuller, while not yet normal certainly on the road to normality.

So how has all this come about? In reality, I am not 100% sure. Perhaps, this would have happened anyhow without re-diagnosis. Perhaps, re-diagnosis has given me the freedom to allow myself to get better. Perhaps, it is that I actually do have a breathing issue and dealing with it is helping. I do not know. Although knowing me, I think I can be certain that it is not that I now feel free to get better.

As soon as I returned home from the Rheumatologist I started to research a) what Dysfunctional Breathing Syndrome was and b) how did I start to do something about it. Becoming aware of how a normal person breathes and how many rough breaths per minute they should take, made me more aware of how I was not breathing correctly and how I was breathing far too often a minute.

Since then I regularly stop myself, assess how I am breathing and if I am not doing it correctly – correct it. Practice again breathing properly for a minute or two then get back to my life. Even prior to my first appointment with a physio about ten days after re-diagnosis, I began to feel more energetic, more clear headed. Again, was that purely psychosomatic? Possibly, but I am beginning to reach the conclusion that it was not.

I am not a doctor or even somebody with a medical background, please forgive therefore the very layman understanding of what is going on with my health. Some of the precise details below may be somewhat inaccurate but the overall meaning should be right. 

Not as often as previously but still at times, I find myself upper chest breathing. These are very shallow breaths that don’t involve the use of your intercostal-diaphramatic muscles.

Click on the link to see how I should be breathing!

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This means that my lungs were rarely if ever filled correctly. In order therefore to get enough oxygen, I had to breathe more often to compensate for the low level of air I inhaled each time.

This however still meant that my body didn’t have enough time to utilise the carbon dioxide in my breath in order to transfer oxygen to my haemoglobin. This therefore carried the problem around my body in my bloodstream: messing up the chemical levels in my body and causing too little of one chemical and too much (such as lactic acid) of another. All told therefore some if not all of my symptoms may to a greater or lesser degree be affected by my shallow upper chest breathing.

The instant benefit of a re-diagnosis was that Dysfunctional Breathing Syndrome is covered by our private medical insurance while M.E. (because it is chronic) is not. This meant that referrals came fast. Where my first NHS physiotherapy appointment is scheduled for October 15th, I have already had 5 physio appointments privately. Additionally, I have also seen a chest specialist – who also diagnosed Dysfunctional Breathing Syndrome although he refused to rule out the possibility that M.E. may also be playing its own role in my ill-health. Interestingly, he used to be an M.E. specialist.

The first thing I have had to learn to do is count my breathing. Try saying Bombay Sapphire Gin (my favourite type of gin for those looking for presents for me). Inhale for Bom-bay, exhale for Sapph-i-re, rest for Gin. i.e. count two seconds for inhalation, three seconds for exhalation and briefly relax my stomach before inhaling again. I was told when I was actively practicing this technique, to lie down flat with my head supported and place one hand on my upper chest (above the breast bone) and the other just below the breast bone. I need to practice feeling my lower hand raise as my chest expands on inhalation and while there will still be movement, the upper hand should not move as much. If it moves more, than I am upper chest inhaling.

Initially, practicing this made me realise that instinctively I was moving my stomach in for inhalation and out for exhalation. Clearly, ridiculous. How can I expand my lungs if I was actively reducing their space for expansion? Equally, how could I expel enough air from my lungs if I was actively expanding my stomach and therefore not using my diaphragm? The diaphragm being the balloon like muscle under your stomach that pushes the air out of your lungs during exhalation by reducing the space your lungs can occupy.

Diaphragm:

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Also, I wasn’t using my intercostal muscles (the muscles that help your chest to expand and contract. This therefore made it even harder to get enough air into my lungs and further to expel the air properly.

By concentrating on trying, in simple terms, to use the whole of my chest (especially the lower chest) to breath allowed me to inhale more air and importantly give the oxygen and carbon dioxide enough time to do what they needed to do before I expel the waste carbon dioxide.

So now, I find myself during as many TV adverts as I can, practicing my breathing. If you could hear my mind as I walk down the street, you would hear, ‘Bom-bay Sapph-i-re Gin, Bom-bay Sapph-i-re Gin’ on constant repeat.

Numerically, the consequence of being so very aware of my breathing has slowed my breathing down. As soon as you try, of course, to count how many breaths per minute you take you subconsciously breathe either faster or slower. However, bearing this in mind, the day I was diagnosed with Dysfunctional Breathing Syndrome I tested myself and found my rate about 25 breathes per minute – today 13. Pretty much normal. This is perhaps not the most accurate way of testing my breathing rate but for a home method it will have to do.

There is no question therefore in my mind, whether or not I really have this Dysfunctional Breathing Syndrome, that actively trying to breathe in a better and slower way must have improved my health. Whether it will provide a long-term cure is yet to be seen.

A friend of mine who is a long-time recovered alcoholic made this analogy for me. Stopping drinking does not solve the problems that caused you to drink in the first place. It does however provide you with the opportunity once the symptoms caused by drinking are reduced, to try and deal with the initial reasons that caused you to drink in the first place.

You won’t be able to deal with these causes all at once but step by step you can deal with the most important ones. That doesn’t mean you will ever deal with all your issues completely but it does at least alleviate the worst of them. Continuing not to drink however is one of the only ways you can stop yourself from exacerbating these symptoms again.

I see the same with me. Breathing badly whether it is an illness by itself or just a symptom was making my health worse. If breathing correctly allows me to reduce if not eliminate some of my symptoms, then it simply makes it easier to deal with the remaining now more isolated symptoms. If, however, I forget to breathe properly again, then this will inevitably bring back some if not all of my symptoms. awkward-breathing-funny-moment-Favim.com-1741341

There may be several reasons why I experience fatigue and several reasons why I feel pain and stiffness but if breathing properly reduces or eliminates some or all of these, then that allows me to get more out of life. To do more without risking damaging my health. To begin to start to get fit and recognise that there is a difference between the ‘M.E.’ lactic acid ache of muscles and the ‘I’m using muscles I haven’t used for a long time’ lactic acid ache.

So today, I look at my achievements of the week and I’m very grateful for and proud of all I have achieved. I have learnt to know my body over the last year and I know that I have not damaged my body further by becoming more active. This week I have: swam 30 lengths of a 50 metre pool; I have driven for 1 hour and 40 minutes; I have walked 9.2 miles; I have done full body stretches everyday holding each stretch for 19 seconds; and I have done 90 minutes of yoga. In March (6 months ago) an average week consisted of walking only 2.25 miles with no yoga, no swimming, no driving and no stretching. Out of the last seven days I have socialised with friends 6 times, each time for at least 2 hours. The days back in March where I had to rest all day and go to bed immediately on return just so I could spend 40 minutes with friends seem a long time ago.

It is clear therefore that over the last month I have seen my activity and my health improve by at least 20% if not 30%. If it is coincidental then so be it; if it is psychosomatic so be it; if it is because my breathing is better so be it. I’m not sure what has caused this improvement in my health but I will continue to do what I currently am because something is working and to use the old saying, ‘if it ain’t broke, don’t fix it.’

 

Thank you to everyone who has read my blog. Today’s blog sees What Will Happen to M.E.? reach 10,000 views from almost 80 different countries. Amazing. 

I’ve Got to Get Out of This Place: Holidaying with M.E.

Having M.E., you live in a self-imposed bubble. A self-imposed bubble but equally a bubble over which you have no control of its size. For some its radius is a mere few metres, for others it is several miles. This is however always an almost completely translucent bubble, few from the outside can see it and although you are always aware of it, from the inside you too can only sometimes see it and you can easily allow the very existence of the bubble to slip your mind.

You can considerable expand your bubble by using the power of adrenalin. Adrenalin pumps up the bubble considerably, enabling you to walk further or stay more active longer. Adrenalin however fundamentally weakens the structure of the bubble. Adrenalin does not add extra material to your bubble, your bubble just becomes thinner and thinner and thinner. While it will for a long time remain intact, prolonged expansion using only adrenalin means that its walls become weaker. It may seem like you are coping with the expansion from outside of the bubble but in the inside, you are feeling weaker and weaker as everyday goes by. Ultimately adrenalin can be a destructive force. Allow it to keep expanding your bubble synthetically and one day it will suddenly burst. Without the safety of your bubble, you absolutely collapse, unable to complete even vaguely what you could have completed prior to your bubble expansion.

There are things you can do to try and strengthen the structure of your bubble: you can rest a lot more, you can go to a spa but ultimately these are just sticking plasters. If you continue to do more than your bubble makes it safe to do, your bubble will burst.

This was my experience of holidaying for the first time with M.E. For 10 days I did so much – I walked 2 or 3 times further than I should have, I sat for dinner for two hours every night and socialised, I lay on a sun bed ‘resting’ surrounded by the chatter of other guests. I knew I was taking a massive risk by doing this so tried to counter it by ensuring that I rested in our room during the day, I went to the spa every day, I went to bed about 8 every night. My bubble still burst and it burst in quite a dramatic way. I went from one minute feeling fine to the next minute barely being able to walk across a room and desperately nauseous at the sight of food.

What was the catalyst that lead to this collapse? I simply wrote for just a little bit longer than I should have. The catalyst wasn’t that I walked too much around town or went out dancing at night. You could argue that there wasn’t really one catalyst to that collapse but actually very many – what about the walking too far every day for 10 days and the socialising over dinner for two hours every evening? You would of course be right. When you are having a lovely time, it is very easy to allow yourself to believe that just because you feel okay at that very moment or even that you feel okay the next day, that prolonged over-exertion won’t lead ultimately to a collapse.

This is the power of adrenalin. Adrenalin masks how your body is feeling; it tricks you into thinking that your body can do more than it actually can. Adrenalin takes no prisoners however – when it decides it is time to disappear, it will disappear and what’s more it will take your energy with it.

Am I then advising against holidaying if you have M.E.? No, not at all. I am however advising that if you are to do it, you don’t forget that adrenalin may well cause you to do far more than you really know inside your little bubble, you should do.

I reached the point after about 5 months of being ill where I was desperate to get out of the house, out of Stratford upon Avon and go somewhere new. I wanted to see new people, new places. I wanted to eat new food. I wanted to wake up in a new bed. I just wanted everything to be different. Throughout my illness I never suffered from cabin fever. Normally during half-terms and summer holidays I would come down with cabin fever within a week or so. I knew I was very ill because I never felt that way. Yet I was still desperate to get away and to be in a different environment. I never felt bored just sick of being in the same place all the time.

It is very depressing to hear your husband and friends and family tell you all about their great holiday or where they have been for work. We normally went on holidays three or four times a year so the concept of having months stretching ahead of me with no plans did get me down.

We hummed and ahhed about how we should go on holidays. Initially, I thought an all-inclusive resort somewhere would be perfect. I wouldn’t ever have to leave the hotel unless I wanted to and was able to. We had, however, never been on such a holiday. We always liked to travel independently. The adventure of searching out where to stay and where to eat was all part of the holiday. This time however we knew that that was not going to be possible.

The other draw back of course to going on holidays to some hotel somewhere was simply the process of getting there. We knew that Chris would have to carry all of our luggage as I was no longer able to do this. We knew that just getting to the gate in an airport might be enough to cause Post-Exertional Malaise, never mind adding in a flight and then transfers after that. It seemed therefore that a hotel someplace warm was probably out of the question. We had also learnt that a hotel in the middle of a city was also out of the question, having experienced the repercussions of this after our trip to Cardiff.

What then was the solution? A year earlier, in desperate need of a holiday, we had gone on a very last minute six day cruise from Barcelona to Dover. It had been perfect for what we needed – a few days away where we had to think about absolutely nothing. We decided that while cruise ships tend to be inhabited by residents significantly older than ourselves, it provided the perfect compromise that we so desperately needed. 8 months after I got ill, we sailed from Southampton to Norway, Iceland, the Faroe Islands, the Orkney Islands and back to Southampton. In many ways it was the perfect holiday although if I was to do it again there would certainly be things I would bare in mind.

I hadn’t read much about other people’s experiences of holidaying with M.E. and indeed in hindsight perhaps I should have. Do I regret going on holiday? No, but I really wish I had known to consider certain things before we left. Would I do things differently if we were to go again? Of course.

As always, it seems that holidaying with M.E. is all about trying to balance the practical management of this illness and the emotional desire to ‘be on holiday’. Without a doubt this was a balance that 80% of the time I got wrong. Except for one day, I got it wrong on every port day. Sea days were slightly easier to balance. The question was always, ‘is this activity worth the potential pay back?’, ‘is the payback going to worsen my illness or is it just going to be temporary?’ There were a million decisions to make every day that had a direct impact on my health. Of course what I didn’t consider at the time (and I don’t understand why) was that even a seemingly temporary impact on my health actually contributed to the overall state of my health.

Being ill at home is so much easier. You learn what the particular parameters of your illness are – you understand what your bubble really is. You know just how far you can push things. You know just how far away something is when you set out for a walk. While after a week of my holiday, at least when it came to the ship, I could answer some of those questions, it was the added peripheral stresses that were often unpredictable. You may be able to walk to the coffee shop fine but it seemed there was no real pattern to how busy or noisy it would be. So one day you would walk there and there would be plenty of seats, even seats away from the rest of the cafe. The next day, at the same time, it would be filled to capacity but there would be one little seat in the centre of all the noise. The next day, at the same time, there would be no seats so you would have to walk further than you intended so you could sit in a different seating area. All of these things were an unexpected drain on me.

In addition, we never really considered the location of our cabin, except that I requested it was close to a lift so I wouldn’t have to walk far. It was and that was great, except what about the 800 steps that were needed to walk to the restaurant every night and the 800 steps back? Luckily, the spa was almost directly over our cabin so I didn’t have to walk far to there. What about the library that was my quiet escape often during our holiday – well that was probably another 500 steps there and back. In relative terms, nothing practical that I wanted to do was close to my cabin. When I left, every second day I would take 4000 steps, on holiday I took anything from 6000 – 10000 a day. An amount that was absolutely unsustainable.

Consequently throughout our holiday, I was very fatigued and spent much longer lying in bed than I normally would – but it was the only place on the ship I could lie in silence. Equally, as I said above, I don’t think I really understood the extent to which my body ran on adrenalin, day after day. In your little safe bubble at home, you get used to understanding whether today should be a gentle day or not because your body tells you so. At home however your body rarely runs on pure adrenalin. Your body once you tune in to it and can hear it, will more often than not tell you straight up what it needs to do or not do today. Adrenalin however masks this.

So, if you are the sensible one and feel you should research holidaying with M.E. before you do so yourself, here is my list of pros and cons about holidaying but in particular cruising.

Pros

1. Embarkation and disembarkation in Southampton meant no flights or transfers.

2. Luggage was collected straight from the car and placed in our staterooms – no dragging of bags everywhere.

3. Having arranged Priority Embarkation, there were no long airport queues. The whole process from car to being in my stateroom took about 15 minutes. Although my dignity didn’t allow me to use it – I could have been wheel-chaired on and off the ship – this I regret not doing – it would have at least reduced my energy requirements on two occasions.

4. One of the most important pros was the onboard spa. I may not have been able to use any of their treatments but the combination of their hydrotherapy pool and heated stone lounge chairs rescued me from collapse on many, many occasions. It also gave me somewhere very tranquil to lie still and meditate all day if that is what I wanted or needed.

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5. I registered myself as disabled. Among the staff that needed to know there was an awareness of my illness and people were extremely kind to me.

6. On days where I couldn’t go to the dining room to eat, staff would arrange for my meal to be sent directly to our stateroom. I spoke to the Head Waiter about this on our first night.

7. I told the Maitre-d about my illness and how having somewhere in the restaurant a little away from the crowds would help. We were given a table that backed up to a window – I could sit with my back to the window – therefore reduced somewhat the noise around me.

8. Room service was included in the price so if my health dictated it, I would never have had to leave my stateroom. I had breakfast there almost every morning and had dinner there 5 times.

9. Every day the ship was on the move, so everyday my view changed. I didn’t have to sit bored by the same pool every day.

10. There were very few children on board so I never had to deal with screaming kids and tantrums. The atmosphere was continuously tranquil!

11. On sea days there was a multitude of activities on – while I wasn’t able to partake in most of these, it did give something for my husband to do while I rested.

12. We either docked or tendered in the centre of most of the towns we stopped at. This reduced walking distances and allowed some very limited investigations of where we stopped.

13. The ship provided excursions that were ‘low activity’ – most of these however were still quite long – 2 – 4 hours.

Cons

1. Although I requested a cabin close to the lifts, I hadn’t really considered just how far I would have to walk to go from one end of the ship to the other. This meant that from leaving my stateroom to going to the dining room and back, I would have to walk about 0.25 mile. This had to be done several times a day. Consequently, I went seriously over my step and distance allowance everyday. It was only because I rested as often as I could, used room service and used the spa that I had only one very serious collapse. In hindsight, I should have asked for a room midship – this at least would have reduced my walking distance slightly.

2. We had chosen a cruise that mainly went to small towns quite deliberately – this enabled me to be able at least to see the town from the ship. The reality was however that I was doing so much walking around the ship, I wasn’t really able to do much walking around the town. This was a real shame as some of the places we visited were just so beautiful.

3. Excursions provided by the ship were often very long and often quite expensive. While you could choose excursions with a limited amount of walking, there weren’t many that were very short! We only chose two excursions and both were over 4 hours long. By the time we got back from the first, I was in a very bad state, very very close to collapse. I still consider it worthwhile however as I wouldn’t have been able to experience the stunning scenery of Norway without it.

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Our second excursion was on a Super 4×4 Jeep in Iceland. Oddly, although it was very long, my body didn’t react against it – that could of course have been down to adrenalin.

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Excursions therefore were all about trying to balance the advantages and disadvantages.

4. We booked an inside cabin because it was cheaper. In hindsight, we absolutely should have booked a balcony. This would have enabled me to sit somewhere quiet and private and watch the world go by. It would have made eating in the stateroom very comfortable and therefore not something I did just because I didn’t feel well. Eating more in the cabin would have enabled me to walk less.

So will I go on holiday with M.E. again – you betcha! In fact, we have already arranged a weekend away in Wales at the end of August. This time however I think I will be a little more cautious about what I do. I think I will listen to my body more but also listen to it with a touch of suspicion. I will be keeping a firm eye out for adrenalin telling me all is okay. Allowing my bubble to be slightly expanded by adrenalin every now and again is no bad thing, I will just need to ensure it thoroughly deflates to its normal size before I try expanding it again.

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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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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

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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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