sickandtired

Thankful Thursday 12

2012-02-02T11:42:00.000Z

This week I have been thankful for a wonderful weekend visit to my native Scotland (although I am of course now suffering double as a result of the trip), where my daughter met her big cousins and the rest of her Scottish side of the family.

Also, I continue to be grateful for and appreciative of the help, support and understanding of "The FB Spoonies Group", which allows me to rant in the dark.

What have you been thankful for this week?

It's Xmas!

2011-12-24T10:34:00.000Z

Wishing everyone who reads and comments on this blog a very Merry Xmas and a happy, healthy New Year. I hope that 2012 will be the year when those of us who suffer from ME begin to see an improvement in our health.

All the best,

Chris. x

Thankful Thursday 11

2011-12-15T10:42:00.000Z

This week I have been thankful for lots of lovely birthday presents, a visit from my twin brother, continued support and understanding from my wonderful wife and, last but certainly by no means least, the good health of my darling daughter.

What have you been thankful for this week?

What is it worth to you?

2011-12-13T14:04:00.000Z

I want you to think of the current state of your finances. Hopefully you are able to form a picture of them in your head: The balance of your current account; the amount you have available to spend on your credit cards; debts that you have; bills that need to be paid; whether or not the car needs petrol; the food in your fridge; and the next time a sum of money will be credited to you. Think of all of those things together, and more, in order to get a clear idea of where you stand financially at this very moment.

Now I want you to think of tomorrow morning. Allow yourself to imagine what it would be like to wake up feeling perfectly well in yourself, feeling healthy and energised and completely symptom-free.

If, like me, the effects of ME are with you every day and if, like me, you are slowly but surely beginning to forget how it feels to be "normal" and healthy, then, like me, a day free from all symptoms is probably something that you literally dream about.

Take a minute to think about how wonderful that would be: A healthy day; one without fatigue, without pain, without the wide variety of fluctuating and disabling symptoms that blight your life. A day where you could do whatever you wanted without first having to ponder the likelihood of it being physically possible and/or the consequences.

What would you do on such a day? Would you take up a lost hobby, as I would, like going out for a run or riding a bike? Would you arrange a party with friends and family, knowing that you wouldn't have to worry about finding a seat, or refusing alcohol, or making your excuses at 8pm before things have really started?

Now, and finally, I want you to put the two things together: Your money and your health. Think about your finances and then think aboout the pleasure of the symptom-free day that you have just been imagining.

What is it worth to you? What would it mean to you? How badly, how desperately,do you want it? If it were possible to buy such a healthy day, how much would you be willing to pay for it? I say often to my wife: "I would give anything for just one day off from ME!" This isn't strictly true - it wouldn't be worth anything and everything - but, as things stand at the moment, I would happily hand over £300 in hard cash if it could guarantee that I would wake up tomorrow morning feeling like my old self.

What is it worth to you? What is your number?

How tired are you?

2011-12-12T12:09:00.000Z

"How tired are you?" A good friend of mine asked me this question very recently, in a nice sort of way and obviously wanting to be able to form an idea of the level of tiredness (or, more accurately, bone-crippling fatigue) that I have to deal with on an average daily basis.

Tiredness is a difficult thing to describe, quantify or compare, therefore I gave the following answer: "I don't care how strong and resilient you are, nor how committed you are to your job. If you were to wake up tomorrow morning and, completely out of the blue, experience the absolute lowest levels of fatigue, pain, dizziness, sensory sensitivity, disorientation and general fuzziness etc that I have had to contend with every day for more than fourteen months then you would automatically classify yourself as being very sick indeed and therefore call in sick to work before taking to your bed for the entire day. I am convinced of this.... Now think of each of those symptoms being cranked up to the maximum for every minute of every day for almost two years. That is my life. That is how I feel. That is the closest I can come to describing how tired I am."

I hope that my friend, and others who have read this, now have a better understanding of, and respect for, the fact that people with ME cope with such severe symptoms without respite and yet get up and out of bed every day and do as much as they can and, in many cases, including mine, probably a lot more than they should. What choice do we have?

My GP or not my GP?

2011-12-03T12:05:00.000Z

Does anyone know of a good, "ME-friendly" GP in or near to Kent or elsewhere in the South-East of England? I live in Greenhithe, round the corner from Bluewater and near to the Dartford Bridge. My postcode is DA9 9TR. I am willing to drive about in hour in any direction.

By "ME-friendly" I mean someone who is willing and able to offer more than the unholy trinity of useless treatments; namely SSRIs, GET and CBT. My own GP, who is a nice guy who has done his best, I believe, readily admits that he has exhausted the possible treatments that he is familiar with and doesn't know what to do next, other than wait for me to get an appointment with the ME clinic. Which won't be before August 2012, at the earliest. And I'm not excited about seeing them anyway because, you've guessed it, their literature tells me that they, too, have nothing more to offer than the usual three, hopeless and hopelessly misguided "treatments."

So, I'm looking for a GP or any other medical practioner who may be able to help me. I need help from somewhere. I'm desperate. If you are able to help me, please get in touch. Thank you.

Thankful Thursday 10

2011-11-10T14:15:00.000Z

This week I am thankful that my daughter, who is ten days old, continues to be healthy and happy (and gorgeous!). I am also thankful and extremely grateful for the overwhelming thougtfulness, kindness, generosity and support of family and friends. It is greatly appreciated and will never be forgotten.

What have you been thankful for this week?

Thankful Thursday 9

2011-11-04T12:16:00.000Z

This week I am thankful that my beautiful daughter, C, arrived safely and in perfect health. I have never been so relieved. She was born at 5:54am on Monday 31st October, weighing seven pounds seven ounces, and has spent her first week at home eating, sleeping and pooing. She is gorgeous and perfect and I have never been so happy.

What have you been thankful for this week?

Thankful Thursday 8

2011-10-20T20:36:00.000+01:00

This week I have been thankful for the thoughtfulness and generosity of family and friends. Without them, the grass would not be cut, the carpet would not be hoovered, the kitchen would not be clean, heavy boxes would still be in my way, furniture would not be assembled, shelves would not be up and pictures/paintings would not be on the walls. In spite of being terribly ill, I know that in many, many ways I am also very lucky.

What have you been thankful for this week?

Thankful Thursday 7

2011-10-13T14:51:00.002+01:00

Today I am thankful that the online ME/CFS community, in its various forms and through its various mediums, is extremely generous with its time and with its emotions when it comes to rallying round fellow sufferers, especially when they are experiencing moments of acute hardship.

I benefitted from this empathy almost immediately after posting “A cry for help?” on here on Friday of last week. The response was overwhelming, humbling, and is something that I will always be grateful for.

I would like everyone who took the time to read this blog, to comment on the post and/or to email me to know that your support, encouragement and advice did not go unnoticed. It did, and it always will, mean a great deal to me. I would like to offer a special thank you to Cusp and her FB comrades, ME/CFS sufferers all, for their tremendous support and their honesty. Cusp, someone whom I have never met and am probably never likely to, was one of the very first people to offer me advice after I was diagnosed with this illness. It seems to me that Cusp and others like her, in spite of their own health problems, are always willing to spend time in helping others. This is a wonderful trait that ought not to be ignored nor undervalued.

There are many others – particularly Tweeters and Bloggers – who are deserving of a special mention but.... unfortunately I don’t have the energy to write a list. You know who you are and I know that you will understand!

Most of all, I would like to thank my darling wife, L, for always being there for me and for making me happy and excited, even in the most dreadful of circumstances. Friday wasn’t the first time she had done this for me and I know for certain that it won’t be the last.

L is my guiding light and my reason. She is the better part of me and without her I would be lost because she refuses to give up and remains convinced that I will make a full recovery. I am chided when I admit that I no longer believe a return to my former self is possible. She does all of this with a wonderful smile on her beautiful face. It is impossible for me to resist her. I don’t try to.

The people in my life who know me well will have been surprised by Friday’s post. Partly because I have never before expressed the true extent of my symptoms and largely because I am never willing to give of myself so completely. Yes, I blog and I tweet and of course I talk openly with family and friends but I am aware of almost always holding something back due to a fear of revealing too much. This is particularly true of, and I am more cautious when using, the internet because it is basically an open forum that can be accessed readily and easily by anyone, anywhere, at any time. However, I wrote what I did on Friday because I want people to see how awful, how dangerous and how utterly disabling this illness can be. Its crippling effects are too often underestimated. I would not have believed that a person could be so weak, so sick, so disorientated and in so much pain and yet still be alive. Even now, I cannot believe that I managed to endure it.

Although every day since Friday has been comparatively better, unfortunately none of them have been particularly good. There has been lots of fatigue, lots of pain and lots of, well, fuzziness. I have felt a persistent detachment from reality, as if the severity of my symptoms has caused my world to be knocked off its axis. This is an unnerving sensation and one that I am keen to be rid of.

Yesterday was probably the first day in a while that I have felt a certain sense of lucidity, with increased energy to match. Sadly and predictably, my optimism has already been curtailed because today, after finally managing to drag myself out of my pit in the early afternoon after a fitful sleep, I am back to feeling rubbish again.

I am getting used to it. Slowly but surely, I am learning how to manage my symptoms. Slowly but surely, I am becoming increasingly aware of what I can and cannot do and, crucially, the inevitable consequences of any and all physical and mental efforts.

This is the life we lead. This is the rollercoaster of ME/CFS.

A cry for help?

2011-10-07T18:05:00.002+01:00

I went to bed at 9:30pm last night, Thursday, after spending most of the afternoon and all of the evening on the couch, barely able to move. I was suffering from particularly bad fatigue and was in lots of pain and wanted the day to be over because every new day is a chance to feel better.

As I closed my eyes to sleep, tossing and turning in the inky blackness and sweating profusely in spite of the chill, I was genuinely fearful that I may not wake up.

My body and mind are clinging on desperately to the remaining, fragile remnants of what life I have left. Death is very near. I can feel it. That is perhaps the best way of describing how sick I have been in recent days.

                                                           *

I woke up several times during the night. There is nothing unusual in that, unfortunately, except that it wasn’t because I needed to pee nor because I couldn’t sleep but was due to the horrible night terrors that forced me to wake. They were repetitive, violent, very realistic and genuinely terrifying. My wife told me that I shouted and screamed several times in my sleep.

Death is everywhere. Fear is all around me now. Impending doom looms large. Even sleep cannot help me to escape the horrors of this illness.

                                                                              *

In terms of my physical health, today, Friday, has without doubt been the absolute worst day of my life. I have never before felt so awful. I have never known such lethargy, such pain, such discomfort. It is difficult to tolerate and impossible to describe.

Every single part of my body, every horrible millimetre of it, is throbbing with a stubborn pain that will not go away. I am so tired and weak that standing up is almost impossible. Holding my head up requires a substantial physical and mental effort. Having written these words, I can already feel that it is about to become even more extreme. This is the harsh reality of how I feel. This is the reality of what it is like to live with ME/CFS, a largely misunderstood and badly underestimated illness that needs to be the subject of substantially-funded biomedical research in order to give sufferers a glimmer of hope that their lives can be good again.

                                                                              *

This is my lowest point. I have never felt worse.

I feel confused, disorientated, emotional, fearful, overwhelmed, helpless and pathetic. I am dizzy, unsteady and hazy. The world is blurry. Everything is out of reach. Nothing is within my control.

I am a wretched creature. I am worthless. I am nothing. ME/CFS has reduced me to this. It is relentless, merciless. It has no sympathy, it shows no remorse. It does not discriminate. It never takes a day off.

                                                                            *

I have cried and sobbed on many occasions today. I do not know why. This is one more thing that I don’t understand. This is something else that I can’t control.

I am eager for this day to be behind me but I know that even then my torment will not be over. Even then, as I give myself over to sleep, I am afraid that the growing tentacles of ME/CFS will haunt me still. It seems to be limitless, all-powerful and never-ending. I want it to stop; for all of this cruel madness to be over. I just want to feel better, if only for one day. I just want my life back. Please. I don't deserve this.

Thankful Thursday 6

2011-10-06T08:55:00.001+01:00

This week I am thankful that my symptoms, which can be very severe, are not as extreme as those endured by other sufferers.

I am also thankful (yet again!) for my beautiful wife, who continues to play the role of Fifth Business in my life. She is my partner, my lover, my friend, my confidante, my conscience, my rock, my reason and my motivation and without her my life would be empty and meaningless. She isn't perfect but she's close to it.

What have you been thankful for this week? Who can't you live without?

Thankful Thursday 5

2011-09-29T11:43:00.000+01:00

This week I am thankful that our baby wasn't born eight weeks early- although we had quite a scare in the very early hours of Monday morning....

What have you been thankful for this week?

Thankful Thursday 4

2011-09-22T18:53:00.002+01:00

I am thankful that this week is nearly over.

Insomniac?

2011-09-20T12:35:00.001+01:00

I had used up my (Zoplicone) sleeping tablets so last night I took a (5mg time-release) Melatonin tablet for the first time; twenty minutes before going to bed, as directed.

It didn’t work. At all.

I lay awake from 10:30pm until 5:30am, too tired to get up out of bed but apparently not tired enough to go to sleep.

It was nightmarish. The boredom and the frustration were excruciating. Although I managed to sleep fitfully for approximately three hours between 5:30am and 10:30am, the damage was already done. I woke up this morning feeling dazed, nauseous, in pain, crushed with exhaustion and broken.

This day will be a long one. I hope that the night brings some relief.

Thankful Thursday 3

2011-09-15T11:48:00.001+01:00

This week I have been thankful for pistachio nuts; home delivery services; being able to read without a headache; advice from other people; Brian, one of my best mates for more than twenty years, who has taken a weight off my mind by being incredibly understanding .... and Kelly Rowland and (naked) Scarlett Johansson.

What have you been thankful for this week?

Thankful Thursday 2

2011-09-08T10:33:00.000+01:00

This week I have been thankful for an amazingly detailed hospital scan that allowed me to see my unborn daughter's lips move; my wife; the fact that my dad is always at the other end of the 'phone; fruit; Sky Plus (again!).... and Emilia Fox.

What have you been thankful for this week?

Thankful Thursday 1

2011-09-01T12:22:00.000+01:00

I used to be a relaxed person. I used to take things in my stride and always looked for positives. This is no longer the case. I realised recently that, since my diagnosis, I have become more of a negative person. I worry and moan more often than not. It isn't a good thing and I hate myself for it.

So, in order to spread some cheer instead of misery, I have decided to introduce a new element to my blog titled "Thankful Thursday." Every week I will look for the good things in my life, of which there are many. I invite you to do the same.

Here we go.... This week I have been thankful for my beautiful wife's soft skin; a visit from my twin brother; the fact that my eldest nephew, H, has been doing well during his first two weeks at school (even though "there isn't much playing"); coffee; granola; strawberries; DVDs; Sky Sports News; the internet; my couch; winning ten quid on the lottery; the kindness of others.... and Kirsty Gallacher.

What have you been thankful for this week?

Drug of Choice

2011-08-23T06:59:00.000+01:00

Has anyone used Low-Dose Naltrexone (LDN)? Was it (un)successful?

Fuck Chronic Fatigue

2011-08-17T09:23:00.003+01:00

fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue fuckchronicfatigue

Double Dose

2011-08-12T10:35:00.001+01:00

With regards my health and physical wellbeing, yesterday was surely one of the worst and longest days of my life. I was crashed out on the couch from morning until night, crushed with debilitating exhaustion and burdened with a near intolerable pain in every inch of my fat body. My head was pounding. My gut was doing excruciating somersaults. The feeling of nausea was constant.

All things considered, a very difficult day.

And perhaps the worst thing about it is that today is already shaping up to be more of the same. Fuck. Shit. Fuck.

I am hoping that it is due to the recent change in my medication and is therefore relatively temporary, but.... I have been here before. There have already been many false dawns and dashed plans and ruined days. The reality is that, almost eighteen months after the official diagnosis, I am not getting better and it is becoming increasingly difficult to believe that my life will ever be the same again.

How we are treated

2011-08-11T10:35:00.001+01:00

With the exception of CBT (nonsense!), GET (dangerous!), and SSRIs and serotonin inhibitors, such as Mirtazapine and Venlaflaxine, have any patients diagnosed with ME/CFS been prescribed other medicines or treatments, either by their GPs or by specialists? Does anyone know of anything that has successfully alleviated symptoms, even if only for a short period of time? As things stand at the moment, I feel desperate for even some temporary relief.

And the loser is....

2011-08-09T12:35:00.001+01:00

I feel like an unwitting pawn who has been forced to take part in a cruel, rigged game of health-by-chance, not by design.

And I am not very happy about it. Because I don’t want to play. I want to take my ball and go home.

Every day indoors is a day wasted; a day of peering through the glass as the world passes me by, leaving me frustrated and unnoticed and terribly misunderstood. Every moment spent motionless on the purple couch is like a dagger through my still-beating heart, as my slowing mind rails against the prison bars but then stops, defeated and confused and helpless, because my body is no longer able to follow.

It is maddening. It is unfair. It is still here. As I said, I don’t want to have to do it anymore.

Who benefits?

2011-07-27T11:34:00.000+01:00

Further to yesterday's post regarding my recently acquired unemployment status, are there any fellow sufferers out there (UK) who are able to advise me on any benefits that I may or may not be entitled to? And if there are any legitimate, viable work-from-home jobs that are suited to my skills set? I would be very grateful for any and all help- THANKS.

School's out forever?

2011-07-26T14:24:00.000+01:00

ME/CFS continues to dominate, plague and ultimately ruin every aspect of my so-called Life; so much so that I recently took the heart-breaking and gut-wrenching decision to resign from my job as a full-time, permanent teacher of high-school modern foreign languages. I feel that I fought a good fight but, in the end, didn't have the energy to sustain it. At thirty-two years old, I am unemployed for the first time in more than sixteen years and it does not feel good. In addition to robbing me of my health, my ambitions and my ability to make plans for the future, a medical condition that I used to know absolutely nothing about but am now, unfortunately, intimately familiar with, has also cost me my job. I am devastated. I am also angry, bitter, upset, ashamed and very, very afraid.

Although my employers - as well as many of my colleagues and students - had been reasonably supportive and patient since February 2010, my erratic attendance was unsustainable. They knew that and, eventually, I knew that, too. So, when I accepted the cold, hard fact that I would be unable to commit to a return to a full-time teaching timetable, inclusive of all requisite duties, from September of this year, I gave the matter a lot of thought and, in consultation with my wife and my union representative, took the decision to resign from my job with immediate effect. It will allow my former colleagues and students the opportunity to resume a normal routine of teaching and learning, unhindered by my frequent absences and declining job performance. In my opinion, I did the decent thing.

This may seem strange, but the decision has brought with it a sense of relief. I am relieved that I will not have to spend the remaining weeks of the summer fretting over my lack of progress; that I will not have to further damage my already extremely fragile health by dragging myself in to work in six weeks time, nor have to further damage my crumbling, perhaps permanently dented, professional reputation by taking more and more time off on the inevitable days when even dragging myself in will prove to be too much.

The relief is tinged heavily with regret, though. Regret over the career that I had worked so hard to build over a period of eight years. And, more immediately, regret over the concrete and unavoidable and disheartening fact that, although I did make some progress earlier in the year and I certainly do not feel as awful now as I did last summer, my recovery has definitely stalled. I am not getting better. This condition is not going away. Everything is on hold. My life is still not my own. I hate having ME/CFS. I hate ME/CFS. I really fucking hate it.

My new target, albeit a more relaxed and, hopefully, a more realistic one, is a return to work in January 2012. To date, I have followed all of the advice given to me by my GP and my Occupational Health doctor; namely to rest when possible whilst maintaining some level of activity, including working. No more, I say, no more! From now on I am going to do it my way. I am going to do what I should have done from the very beginning. I intend to rest my body as often as possible during the next five months, whilst making an effort to maintain an active mind. That is my plan. It is a simple one, no doubt, but I have my fingers crossed that it will prove to be effective in igniting some much-needed and long-overdue progress in my quest for a healthy me. As before, only time will tell....

Healthy New Year?

2011-01-01T17:55:00.000Z

2011. At last! 2010 was a fucking horrible year and I am glad that it is now behind me, behind us. We will never be able to forget those twelve months. They will always be remembered as being almost entirely negative, with few reasons for cheer.

That is because, due to ME/CFS, 2010 was a year when our lives were on hold, at the mercy and cruel whim of my bad health.

My wife and I went to a friend's house for dinner last night. I had a good time, punctuated as it was by a forty-five minute nap, and we did not go to bed until two o'clock this morning. That was far too late for me, of course, but I was determined to begin this new year on my own terms.

We are hopeful that today marks the beginning of a fresh start in the form of a steady recovery, an opportunity for us to get our lives back on track. I need to believe that it is possible because twelve more months of the same would surely be unbearable.

I am looking forward to a happy and healthy year.

Bada Bing!

2010-12-15T22:16:00.001Z

You know that you are on an unwanted and unpredictable emotional rollercoaster when an episode of "The Sopranos" brings you close to tears.

Man At Work

2010-11-18T13:42:00.001Z

I struggled to sleep last night and this morning. When I did doze off, I endured dreams about a serial killer (I was his intended next victim); a 'plane crash (I had a window seat); and some sort of multi-coloured, industrial-sized crocodile (I was dinner).

I threw up yesterday. The day before I had a prolonged dizzy spell and thought I was going to pass out. The day before that I almost crashed my beloved 1971 VW Beetle because my concentration levels are shot to pieces. Four days ago I swallowed more than the recommended dose of pain killers because I could no longer bear the indescribable pain in my legs. Also, I seem to have developed a cough to rival the one that I had during my smoking days.

This list is by no means exhaustive, of course.

However, and this is a potentially big moment, these symptoms are no more than minor complaints. They are things that I can and do put up with.

The huge positive to outweigh all of these negatives is that the debilitating fatigue that has plagued me incessantly since February of this year has eased recently. I have had more good days than bad during the past three weeks. In addition to going out for a couple of short walks on weak legs, I went to work for a few hours on Tuesday and Wednesday of this week. I did not teach any classes; I was simply there, keeping order and helping with problems.

I was tired each afternoon but I was not out on my feet. The effort took its toll but it did not render me helpless on the couch; it did not defeat me. It felt really good to be out of the house, to be at work again in a suit and tie.

At the risk of getting carried away with false hope, which I have done in the past, my improved condition in recent weeks could be a genuine sign of recovery. I need to believe that it is possible. I am still very, very far from my old self of approximately ten months ago but for the first time I have a glimpse of being able to turn a corner. Long may it continue.

I fucking hate ME/CFS

2010-09-30T11:26:00.001+01:00

I do not feel good. Things are not as awful as they have been in the recent past but my physical and mental health could certainly be better. Headaches and fatigue greet me at every dawn. The frequent changes in weather mean that these standard symptoms have recently been joined by a heavy cold.

My mood and my capabilities are redefined on a daily basis by a semi-permanent malady, an unwanted malaise quotidienne, that continues to take its toll on who I am. I worry now that this burden will never leave me, that the enforced changes to my life will not go away.

My previous well-meaning determination to not become a slave to this affliction is rapidly dwindling because there seems to be no viable alternative. I rarely forget to take my medication. I do not drink, do not smoke and my diet is mostly healthy. What else can I do? It is difficult to manage a condition that I still do not fully understand.

More than seven months have passed since the initial diagnosis. Seven months! At the risk of indulging in futile whining, I cannot help thinking that it is terribly unfair. At the risk of embracing the negativity of it all, I cannot help thinking that it is permanent. Fuck. I fucking hate ME/CFS.

This. Is. Shit.

2010-09-16T12:21:00.000+01:00

I did very little while on holiday from work during the summer months, hoping that a period of prolonged rest would serve to further aid my recovery. This seemed to have worked because the good days were starting to outnumber the bad and I had even agreed with my employers that I would get back to teaching classes for three days per week.

However.... This past week has been horrendous. Rather than making progress, my condition seems to be regressing to how I felt around the time of my diagnosis. The pain in my arms, legs and even my hands is back. My head is thumping and feels foggy. Nausea is becoming more common, although I have yet to actually vomit. Breathlessness and a pounding heartbeat quickly follow any level of physical effort. It is taking me longer to fall asleep at night and although, thankfully, I am still sleeping reasonably well, I cannot seem to get enough and always wake up feeling shaky and exhausted. In short, things are shit at the moment. I have had enough of this and want my old self back so that I can regain my old life.

My monthly appointment with the GP is tomorrow afternoon. I need help. I need answers. I need things to improve before I go out of my fucking mind with loneliness, boredom, impatience, anger and frustration.

UPDATE

2010-08-02T13:24:00.001+01:00

After a four month absence from this blog, it is difficult to know how and where to start. My last proper post, "Ouch", from 31st March seems like it was a long while ago but I am very pleased to say that the extreme fatigue and unbelievable pain that I was experiencing at that time are now, for the most part, less intense. They are still very much part of my day, of course, but I have more energetic moments and my bones are not aching to the same extent. This is good news and I am heartened and encouraged by what could be described as some level of progress.

Having said that, I may look good from far but my health is still far from good. The general feeling of lethargy is close to permanent, my legs trouble me the morning after even a short walk the night before, and it is increasingly difficult to make concrete plans as life seems to be passing me by while the relentless calendar rolls on, forever forward. Also, I have noted with some concern that I am becoming inreasingly clumsy and forgetful. Is this typical?

As a high school teacher, I am now on holiday for the summer, up until the end of August. I have rarely managed to get to work since the beginning of April and I made the decision to demote myself from a well-earned position of responsibility in order to lighten the load. A tough choice after considerable effort in recent years but I have no doubt that it was the most sensible thing to do. I did manage to get in for several half and full days just prior to the break, which has given me some encouragement and a little bit of much-needed confidence.

The main positive is that I have been sleeping better in recent weeks, without resorting to the wildly powerful Zoplicone tablets. Sometimes I am so tired tired that I can fall asleep naturally without as much difficulty as before. This is a welcome relief from staring at the dark ceiling for hours on end.
I am still taking 30mg of Citalopram SSRIs every evening. I have never been fully convinced that they are beneficial, until recently when I neglected to renew my prescription on time and therefore was without tablets for a few days. To my surprise, I noticed that I began to feel worse and then picked up again once I started back on them. Interesting.

I suppose the short version of this update is that I am feeling better than I was a few months ago but, unfortunately, I am still far from the halcyon, not-yet-forgotten days of being my usual self. I miss being me and admit to being desperate to feel good enough to go out for a run. Not now, not yet. Hopefully I will find myself back on the start line again, one day. In order for that to happen, I must continue to be careful, sensible and even selfish when necessary. Oh, and no more curries.

"I'll be back"

2010-07-27T07:44:00.002+01:00

I hope to post again very soon. Watch this space....

Ouch

2010-03-31T12:28:00.001+01:00

What the fuck is wrong with me? I didn't manage to get any sleep at all last night. Not too unusual, except that instead of staring at the walls and ceilings for hours on end I spent the time writhing around the bed in constant agony. My head has been pounding almost non-stop for the past three days. My arms and legs are sore and seem to be increasingly thin and fragile. My throat is rough, my ears feel blocked, parts of my spine are causing me hassle, the bags under my eyes have taken on a life of their own. Even my toes and teeth are hurting me. I feel very weak and very, very tired. Everything is painful.

To make things worse, this was supposed to be the day I left on a 500 mile charity cycle ride (http://www.justgiving.com/ROWLAND-WOOD) from London to Donegal in order to raise funds for the fight against Motor Neurone Disease. I pulled out several weeks ago when the fatigue became constant and overwhelming and, now that the start day is here, it has hit home to me that I am gutted at being forced to miss out. Here I sit, in agony and with barely enough energy to get up and down the stairs of my house never mind get on a bike. I couldn't even get to Donegal in a car at this stage. It might as well be a city on the moon.

School daze

2010-03-26T15:51:00.002Z

I went to work again on Tuesday, my first time there since the disaster of last week. Although I didn't feel as bad at the end of the day as I did last Wednesday, getting through the lessons was unnaturally exhausting. Mentally and physically, it was once again a real struggle. Something is still wrong.

This preceded my appointment with GP 1 on Wednesday evening, the first time I had seen him since my initial visit almost three weeks ago when he suggested that the cause of my symptoms could be ME/CFS. We discussed how I am feeling and I explained to him that, in addition to increasingly frequent and severe headaches, I have been physically able to do less and less with every passing day without it taking a toll on me. He assured me that feeling bad at work but feeling comparatively better when at home is not a coincidence. It is, he said, due to rest and that prolonged rest is exactly what my body needs at this time. He has signed me off work up to and including the week ending Friday 16th April, which will mark the end of the forthcoming Easter holiday. There is no guarantee that I will be able to return at the very beginning of next term. I am far from happy about this prolonged absence from my job - it goes against every instinct that I have - but am beginning to accept that it is absolutely necessary to effect a possible recovery. Anything other than rest could realistically result in long-term health problems. In my mind, this is not an option. I must put aside the feelings of guilt and shame and the doubts that being off sick always stir in me and put my students' learning and my own career progression to one side until I feel better. Getting back on my feet must be my priority. Running again and getting back on the bike are never far from my mind. Perhaps I am stubborn to a fault but I have still not written off cycling from one end of Britain to the other this summer. I could still do it, however unlikely it may seem at this point in time. It is not impossible.

As for the appointment, it went as expected. I was insistent that I am neither depressed nor stressed. I was insistent that my mental state is fine, other than the understandable frustation caused by the fact that I continue to be limited in what I can do. Being stuck at home for most of the day, most days, with exercise and work and everything else on hold indefinitely with a shaky diagnosis and an even more uncertain prognosis is not good for me and would not be good for most people. I refused his offers of putting me on the staggeringly long waiting lists (six months!) for both graded exercise and cognitive behaviour therapy. Who are on these lists? This is where my extensive reading and research and note-taking over the past three weeks served me well. I do not need GET. I am not always tired because I am unfit. The opposite is true, namely that I am becoming increasingly unfit because I am always tired. My previous decent level of fitness is waning because I have not been physically active for several weeks. I want to exercise but physically can't. As for the CBT, it is of no use to me because I have physical symptoms. My current physical state is not due to patterns of behaviour or thoughts. Something else is the root cause of my symptoms. In my opinion, identifying the cause and thereafter treating it effectively is the key to my recovery. This will need to be discussed in detail during my next visit.

I did agree to try a course of well-known SSRIs, mostly because this was his only other suggestion. He stated that taking them over the course of several weeks may increase my physical tolerance limits. I hope that he is right but, quite frankly, am unconvinved. I am more inclined to agree with Dr Myhill in that they will increase my desire to exercise but add nothing to my physical ability to do so. Once again, this is not dealing with the root cause and the subsequent symptoms. As I have said, I am on them now because no other suggestions were forthcoming and I believe that trying them will put me in a stronger position to discuss other possibilities during my next appointment.

Lastly, the long list of potential side-effects is frightening. If this turns out to be my last post, it will be because I have done myself in or am out on the street trying to score more pills.

Happy

2010-03-24T12:00:00.001Z

Shelli over at Living The CFS Life has very kindly nominated me for a Happiness Award. Thank you very much.

The rules:
- When you have received this award you must thank the person that awarded you this in the new post.

- Name 10 things that make you happy.

- Pass this award onto other bloggers and inform the winners.

Here are my ten things, in no particular order:

1. Lounging on the couch with my wife's legs draped over me, watching rubbish telly and maybe doing some kissing during the adverts.

2. Running in a race, with hundreds and sometimes thousands of other people all heading towards the same finishing line who have different reasons for being there and different targets in mind.

3. Spending time with family and friends, including playing hide-and-seek with my eldest nephew and getting a cuddle from his little brother. Wonderful.

4. Watching my beloved Glasgow Celtic playing football at Celtic Park, especially an Old Firm match or a European night. I have missed it since I moved from Scotland to England more than three years ago.

5. A really, really good coffee.

6. Eating out at a resaurant.

7. Seeing a brilliant film at the cinema.

8. Cycling. I love the endurance it requires as well as the speed and sense of freedom it delivers.

9. Travel. I get excited by visiting other countries and seeing different people, cultures, etc.

10. Being in the middle of a good book, to the extent that I am thinking about it during a busy day and looking forward to getting back to it.

I would like to nominate Sue, Forgetful Girl, Cusp, Richard, Jo, Toni, and Lee because they have given me lots of help and advice since I started this blog. I really appreciate it.

The Rolling Stones

2010-03-22T15:51:00.000Z

I have always been a massive fan of The Rolling Stones. I love their music and going to two of their Glasgow concerts with my twin brother are two of my best ever nights out. My recent inactivity means that I am showing increasing signs of gathering moss and, as a result, some of the songs of my favourite band have taken on new meaning:

I Can't Get No (Satisfaction)

You Can't Always Get What You Want

Not Fade Away

It's All Over Now

Start Me Up

Miss You

Beast Of Burden

Shattered

Mixed Emotions

Tumbling Dice

Emotional Rescue

Losing My Touch

Little By Little

Good Times, Bad Times

Time Is On My Side

The Last Time

Long Long While

Standing In The Shadow

No Expectations

Surprise Surprise

Try A Little Harder

Out Of Time

Sway

I Got The Blues

The Worst

Any additional suggestions of Stones' songs or appropriate titles by other singers/bands?

Back to school

2010-03-18T12:16:00.002Z

After the recent confusion and uncertainty surrounding what exactly it is that is that is wong with me, and after a weekend where I semed to have perked up a bit, I decided to go back to work for at least a couple of days this week. I have been a working as a high-school teacher for about eight years. It is my career, the only post-study job I have ever had. It can be very enjoyable but, contrary to oft-published public misconceptions, it can also be very difficult and very challenging. My work days are never six hours long. They are always challenging and therefore mentally and physically taxing.

I made the decision to go back for a few reasons: I have exhausted my sky plus planner and my DVD collection; I am concerned about the (lack of) progress being made by my students in my absence, particularly my exam classes; and, crucially, I felt a need to clarify exactly what two days up and about would do to my body.

Well, now I know. I am more convinced than ever that the suggstion made by GP 1 - that I may have ME/CFS - is a very real possibility. Fuck. I went to work on Tuesday and Wednesday and I struggled immensely to get through the days. The effort wiped me out and left me physiacally exhausted. At the end of each day, particularly Wednesday, I was completely done in and had a really bad headache. My movements were slow and laboured. Also, it was obvious that, after struggling with several weeks of extreme, almost constant fatigue, some of my colleagues were shocked by how terrible I look. The bags under my eyes seem to have developed a life of their own and new grey hairs are breaking through on a daily basis. My natural charisma, effortless charm and winning smile seem to have faded away! In short, I look like shit.

The people at the top of the school tree have been good about things, so far. I am someone who is rarely off work and they realise that my current absence is due to genuine, potentially serious, reasons. I have agreed to work on Tuesday and Thursday of next week and just take it from there. There is little or nothing that I can do from home - in spite of the fact that the paperwork is piling up! - because I rarely have the energy to do anything worthwhile. The toll that a couple of days at work have taken on me has, obviously, raised several questions that will need to be addressed sooner rather than later: How long will they put up with a member of staff who is, at best, able to do only two days per week? What are the long-term inplications of not being fit enough to hold down a regular job? Have my forthcoming promotion prospects been cruelly snatched away from me? Will this ever end? When will I get a concrete diagnosis? This last question continues to gnaw away at me. I am usually quite pro-active and am prepared to do whatever it takes to get better but, at the moment, I am still in a state of limbo and am therefore beginning to feel increasingly frustrated and helpless. I need to know what is wrong so that I can fix it.

In the meantime, the school and the rest of the world around me carry on regardless, of course. I ache to be a part of it all again. I miss my old energy end enthusiasm. I miss going out for a run. I miss my bike. I even miss the routine of geting up and going to work. As the uncertainty mounts, Wednesday's appointment with GP1 - the first time I will have seen him since his "diagnosis" - becomes increasingly important.

Patient

2010-03-15T17:20:00.000Z

My appointment with the doctor, GP 2, did not go as well as I had hoped. He disagreed with GP 1, who suggested that my symptoms were consistent with ME/CFS, but stopped short at making a suggestion of his own. He did, however, give me a list of questions to fill in that seemed to focus more on my mental state rather than my physical wellbeing. I repeat: I am neither stressed nor depressed! Yes, I am frustrated at my current inabilty to live my life as I want to but this frustration is borne out of physical restrcitions due to physical symptoms.

One of the GPs must be correct but of course I have absolutely no idea as to which one. This means that I am stuck, stuck without a diagnosis and therefore stuck without any treatment or medicine except for prescribed sleeping tablets and over-the-counter pain killers.

My symptoms have been up and down over the past few days. Sometimes I feel much better and allow myself to think that it has all passed and I am better, yet at other times I am completely done in and have barely got the energy to get up from the couch. The headaches and nausea are less frequent but have not disappeared completely. I was back for another blood test this morning and have another appointment, with GP 1, next Wednesday evening. In the meantime, my feelings of boredom, frustration and guilt have led me to decide to return to work tomorrow. Also, I want to know for sure if a couple of days back at school really will wipe me out. There is only one way to find out for sure.

The headaches and the nausea are not imaginary. Neither is the constant fatigue. It is a genuine cause for concern that I could be fit and healthy enough to run in a ten mile race and then, four weeks later, be physically incapable of doing any exercise. These facts are undeniable and they are pushing me to find out what is wrong so that I can take steps to fix it. For this reason, as slow and frustrating as the process of being properly diagnosed is turning out to be, I intend to be patient and to see it through.

What's up, doc?

2010-03-11T18:58:00.001Z

When I saw the GP on Friday of last week, he made the tentative suggestion that I may have ME/CFS by handing me a piece of paper with a list of symptoms on it and advising me to see if it seemed to fit in with how I have been feeling. Due to the confusion and uncertainty that surrounds this illness, I can fully understand why he did that. He gave me some sleeping tablets and said that he would see me again in just over a fortnight, when he gets back from holiday. At the time, I had no reason to think that waiting two weeks could possibly have any effect on my health. However, six days later, things are very different. My symptoms - mainly constant fatigue, increasingly frequent headaches, a possible heightened aversion to sensory input, and occasional nausea - have not gone away. These symptoms have not been alleviated by rest and I am becoming convinced that his cautious diagnosis may have been correct. I am basing this, of course, on what I have discovered about the illness since I was last in his office. That's my point. During the first appointment my main reaction was one of surprise. I had no idea what I was dealing with at that point and therefore did not have the foresight to seek further advice and clarification. As I have said, things have changed since then. When not watching DVDs or working my way through the sky plus planner, I have spent a considerable amount of my time during the past six days finding out exactly what my enemy is and now, naturally, I have more questions than answers. These need to be properly addressed sooner rather than later. In short, I cannot run the risk of waiting any longer to start the process of putting myself and my health on the road to recovery. Therefore, I have made an appointment to see the doctor - any doctor, the one who is available - tomorrow morning. I am pleased at my atypical decisiveness and have my fingers crossed that it will be rewarded.

I made the appointment because, in my opinion, it is imperative that I have a proper diagnosis as soon as possible, one way or the other. If it is not ME/CFS, then what the hell is wrong with me? I am still ill so it must be something. He needs to rule out lots of other, viable possibilities: Chronic Lyme disease; Immune Dysfunction Syndrome; anemia; sleep apnia; allergies; HHV-6 virus; Postural Orthostatic Tachycardia Syndrome (POTS) or some other form of dysautonomia; Addison's disease; diabetes; Epstein-Barr; B-cell immunodeficiency; glandular fever/mononucleosis; lupus; hypothyroidism; Orthostatic Intolerance (OI). I have symptoms that partially or wholly match each of these.

If these can be discarded and ME/CFS is indeed confirmed, then I need to know immediately. Consequently, what are the best ways to deal with what I have? He mentioned graded exercise, anti-depressants and cognitive behavioural therapy as the primary treatments. If these are legitimate ways to help me fight this illness, then I need to discuss these in greater detail and decide on the most appropriate course of action. It is clear from what I have read that people with ME/CFS who have been ill for less than two years have a high likelihood of recovery within two-three years of their initial diagnosis. This fills me with hope and helps to fuel my determination. I admit to already being concerned that graded exercise - or any strenuous activity - at this early stage could potentially cause long-term damage to my health and even irreparable damage to my chances of making a full recovery. I require medical advice before making such a huge decision. As for the the anti-depressants, I am very uncomfortable with this suggestion. I am pissed-off about being stuck in the house with no energy but I am neither stressed nor depressed and it seems to me that taking a substance that will artificially alter my mood can have no physical benefits and simply encourages the notion that ME/CFS is primarily a neurological condition. I have physical symptoms- physical pain and physical weakness. My brain wants me to be active and to exercise but my body can't. Lastly, maybe I am feeling the onset of a foggy brain that seems to go hand-in-hand with ME/CFS but I cannot figure out what cognitive behavioural therapy is!

Also, perhaps he could help me to identify what triggered the ME/CFS? If this is possible, it is also possible that my recovery could be augmented by immediately treating the source with aggressive anti-virals.

My other pressing concern at the moment is that I am coming to the end of my second consecutive week away from work. I can honestly say that ten days' absence is probably more than I have taken off in total, up to this point, since I started teaching almost eight years ago. I work hard at being a decent teacher and as a result am in the running for a good promotion within the next few weeks. I have always taken my job very seriously- it's my career - and believe that I have earned my stripes by working with some difficult kids and equally challenging staff over the years. This job prospect, at my current school, would make it all worthwhile. It would also mean more money in my pocket. Unfortunately, not being in the classroom and not being involved in the middle-management side of things at this time could justifiably hinder my chances. Having said that, I am keenly aware that it would be unwise of me to ignore the wise advice from the voices within the ME/CFS community who are urging me to take it easy and to rest as much as possible at the moment. It is confusing to me, however, that rest seems to be vital yet the doctor who hinted at ME/CFS as being the cause of my symptoms gave me a sick note for one week only. Quite frankly, I am unsure as to what the best next step is and my uncertainty over returning to work is one of the main reasons behind my decision to make the appointment. I want to go back to work, I really do, but there is a part of my mind that is cautioning me against it because, as obvious as it may sound, I know that health and mobility cannot be replaced by wages and a better job title. I must avoid permanent damage. Conversely, what if I decide against applying for the promotion and then, a couple of weeks later, I start to feel better and it turns out that ME/CFS was a misdiagnosis? In both instances, there would be no turning back the clock.

I don't know what to do next other than make the most of my time with the doctor tomorrow by getting as much solid information and advice as he has to give.

The not-so-super information highway

2010-03-09T16:34:00.001Z

As a self-styled, regionally-recognised intellectual who prides myself on having a massive brain, my first reaction on hearing that I may have ME/CFS was to research it and to gather as much information as possible. (Actually, truth be told, my first reaction was: "What the hell is ME and what the hell does it have to do with me, mister?!"). So, I did what anyone who has a computer but who does not have a library card does: I turned on my laptop (normally our roles are reversed), waited about ten minutes for it to whirr into action, checked my e-mails and then spent too much time reading pages and pages of stuff written by and about people who know loads more about this thing than I do. I am really smart, as I have said, so I immediately noticed that finding out about ME/CFS is not as easy as I had hoped. As it turns out, a couple of glossy leaflets and a quick call to NHS 24 (the government's solution to the swine flu crisis) won't quite do the trick with this one. It seems to be a highly controversial, debatable and ultimately misunderstood illness - can I even call it that? - that the world at large is oblivious to.

I have looked at literally dozens of internet sites, forums and blogs over the past few days. Lots of what I read is greatly encouraging, in terms of prognosis and even potential recovery. Crucially, there seems to be a huge network of good samaritans out there who are willing to use their own situations in order to advise people like me, people who have no real clue as to what to do next. As you will see from the comments section of my first post, I was almost immediately contacted by several fellow sufferers with, unfortunately, a considerable amount of collective experience and knowledge of what it means to live with the diagnosis. I am overwhelmed by and grateful for such a quick, supportive response. Although nobody wants to have to deal with this, the fact that there are other people out there in the world who are have gone through what I am going through at the moment is, in many ways, a comforting thought. There are untold numbers of sites that are filled with good advice and I am sure that I will learn a lot from them as things progress.

Having said that, however, the unfortunate and perhaps inevitable flip-side is that there is also a lot of shit out there too. In addition to what I can only describe as obvious misinformation in terms of prevention, diagnosis and suggested treatment, etc, some people are openly cynical about whether or not ME/CFS even exists. I may be wrong but all of this is further complicated, in my humble opinion, by two important factors: There isn't currently a test or a series of tests that is capable of delivering a 100% concrete diagnosis and, crucially, the symptoms, sufferings and general experiences of those who are acknowledged as having ME/CFS tend to differ greatly in such things as severity, longevity and prognosis. No wonder there are so many people who complain about having a foggy brain.

On top of contradictory and confusing info, some of the things I read were, quite simply, scary as hell. Stories about people who have had to completely abandon their jobs, some who rarely have the energy to get out of bed, and others who are living their lives in almost constant pain, with or without smoking copious amounts of hash. Scarier still, I read a few quotes - which may or may not be accurate - from people in the medical profession who compared the agony of severe ME/CFS with the dying months of an HIV/AIDS patient. One piece of information that jumped out at me more than all of the rest - and again, there is no way for me to confirm the credibility of it - is that approxmately 20% of ME/CFS patients choose to commit suicide. Fucking hell! As my legs went weak and I had a dizzy spell in the shower yesterday, I had a fleeting thought: Where did they find the energy from?

I am very aware that I am absolutely brand new to what one person called Planet M.E. I have yet to endure any real physical hardships and, admittedly, the emotional side of things has not quite hit home, for the moment. I am very far from being in a position to comment with any authority on ME/CFS and any related illnesses and currently I am writing this blog for my own benefit, as a way of dealing with my GPs initial suggested diagnosis and thereafter as a way of coping with and perhaps analysing whatever may happen next, both physically and mentally. My intention is not to offend anyone but simply to use this blog, at least initially, as a way of processing my own thoughts on the issue. Therefore, I make my next observation with the utmost respect for the people who have endured this illness over a prolonged period of time: In addition to accurate and inaccurate information and a plethora of supportive and resilient people, it struck me during my "research" that there are lots of people - perhaps understandably, perhaps not - who opt to lie down to it, to give in, to live a life of restrictions. The easy response to this observation - other than "fuck you" - would be "that's easy for you to say, new guy." I understand this, of course. However, as someone who has stubborness and blunt resilience running through me, I could never envisage a future where I am wholly at the mercy of someone or something else. It has already occurred to me that, as things progress, I may have to re-evaluate certain physical and mental limits that I have taken for granted up to this point in time but I cannot and will not accept that this should be anything more than a temporary adjustment, a mere set-back on the road to ultimately achieving long-held life targets and physical goals, none more so than completing a marathon and cycling unaided from Lands End to John O'Groats. These are ambitions that I will achieve.

A diagnosis, sort of

2010-03-07T14:07:00.002Z

Exactly three weeks ago, I took part in a 10 mile running race over at Sidcup and was reasonably pleased with my time of 79 minutes 17 seconds. Slightly slower than last year but overall a decent effort. That was the last time I felt able to do any form of exercise. In fact, that was the last time I had the physical energy to do much of anything. On Thursday afternoon of last week I walked to and from the local shop to get the papers, a total distance of about three quarters of a mile on very familiar streets that I have ran along countless times, and I was knackered by the time I got home. I rarely drink alcohol, I quit smoking at least seven years ago, I eat healthily with very few exceptions and I exercise regularly yet a short walk left me feeling completely done in. This confirmed what I had become inreasingly aware of: Something is wrong with me.

As a Scotsman with an unrivalled talent for stubborness and an equally sound ability for wide-of-the-mark self-diagnoses, it is extremely uncommon for me to even think about making an appointment to go to the GP. I consider it to be a waste of time, an admittance of defeat and a sign of weakness.

"It will be ok." "Leave me in peace, I'll be fine." "Whatever this is, it will go away on it's own."
"Of course I'm still going out for a run. Why wouldn't I?"

You get the idea. About six years ago I had been feeling pretty rough, a technical term, on and off for a few weeks. People were saying to me: "Are you ok mate? You're a helluva colour." All I could think to say was that I felt really bloody tired. Beyond that, I couldn't describe it. Anyway, my better half (who is now my wife, the lucky thing) finally nagged me into submission and convinced me to see the doctor round the corner from my parents' house, where I was still living at the time. He gave me some blood tests and said that things were bang on so I had probably been suffering from nothing more than a viral infection. I had long since suspected that the word "virus" is used as a standard definition when the docs haven't got a clue what is wrong with the unfortunate sod sat in front of them and, because I was feeling more like my old self by the time the results came back, shrugged my shoulders and looked at my watch. I did pay a little bit more attention, however, when he went on to say that it may turn out to be the case that this virus would stay in my system and could resurface at any point in the future. Although I was in my early twenties at the time and hadn't given much thought to "the future", for some reason this sentence struck me and stayed with me. It sounded vague but ominous and I never forgot it.

Since then, the feeling of tiredness has indeed returned on a few occasions. Looking back now, probably more times than I realised. I always blamed it on the mystery virus.

I started to exercise more during the past couple of years, running and cycling quite regularly and getting right into it by buying all the proper gear and training and preparing properly for races. Things had been going well and I was starting to feel fitter and stronger and faster with every passing week. I confidently signed up to take part in the Edinburgh marathon in May of this year - it was to be my first ever crack at any distance over thirteen miles -and I made plans to join a group of friends in cycling the 500 miles from London to Donegal over seven days this Easter. These were to be the starters before the main course of cycling the length of mainland Britian from Lands End to John O'Groats this coming summer in order to raise money for Cancer Research UK, a long-held dream and the ultimate focus of my efforts. These intentions now seem to be nightmarishly difficult, perhaps impossible, and this was brought home to me yesterday when I took the heartbreaking decision to pull out of the Donegal trip. To say that I am devastated would be to misrepresent and woefully understate my bitter disappointment.

Although I am obviously writing this in hindsight, I can clearly remember that I have been tired and lethargic much more often in recent months, forcing me to reluctanlty take the odd day off work and to miss some races that I had trained hard for. Neither of these are things I do lightly and without just cause. Again, I blamed it all on "that bloody virus." My normal energy levels usually returned within no more than a couple of days. This time, however, things are clearly very different. In addition to increasing, persistent levels of what I can describe only as debilitating fatigue, I have struggled to sleep at night, my legs ache now and again and I wish these headaches would go away and not come back another day. As I have said, I have been feeling this way for three weeks with little respite.

Last weekend I had had enough and, with minimal nagging from the missus and uncharacteristic pleas from me, we abandoned a night out and headed to the urgent care centre at the local hospital. The silly cow on the reception could not have been less helpful, neither could the GP whom I waited ninety minues to see for about ninety seconds. They both looked at me with indifference when they asked what was wrong and all I could manage to say was: "I have been exhausted for weeks and my head has been hurting for the past couple of days." The GP suggested that I should get a blood test but, as I rolled up my sleeve, she looked at me as though I had just hit her on the head with a bleeding child and went on to hurriedly explain in a patronising tone that she is too much of a special princess to carry out such a low-level task and that I would have to see my own doctor whenever possible. Charming and helpful she was not.

My wife managed to get me in to see the nurse at our local practice for the following day (Monday of last week), a very helpful lady who immediately put me at ease and who had no problem doing her job by jabbing me with a needle and draining some of my blood. The follow-up appointment was on Friday evening, when I discovered, once again, that my blood results are fine and show no indicaion of anything sinister. I felt a familiar sense of frustration but, because I had resolved that on this occasion I would be insistent and persevere in my search for an accurate diagnosis, I bit my tongue and we pushed ahead. The GP, a new fella, then listened intently to my symptoms and went on to make what I would describe as a tentative suggestion rather than a concrete diagnosis: "I cannot be sure but I think that you may have Chronic Fatigue Syndrome, also known as ME." I had, and still have, no real clue as to what that is and, quite frankly, he didn't seem too sure himself. However, he showed me a piece of paper with a list of ME/CFS-related symptoms on it and it was like a light going on in my head (ouch) because it described almost exactly how I am feeling.

Finally, a breakthrough of sorts. It seems to be much more serious than I had anticipated but I feel very relieved that I don't have a brain tumour and, after all of this time, there is a name for what I have, albeit one I can spell but can't pronounce. He gave me sleeping tablets, a sick-line for work, a little bit of hope and instructions to see him again in two weeks. I intend to use this time to read all the available literature on this condition and be armed with a list of questions for when I am next in his office. Even at this very early stage, it is obvious to me that information is vital.

This diagnosis means that I can make strides towards making myself feel better and re-establishing my own routine. Assuming, of course, that I can muster the energy to get my tired arse off this comfy couch.