Post Ten. What’s My Future?

*Warning – This post touches on a very sensitive issue in the last two paragraphs, maybe especially so for someone currently experiencing bereavement. My intention is not to upset or shock. I am simply being honest about how my illness affects me, and what my future may hold, should a cure or treatment for ME never be found.

I read an article recently that had me bawling my eyes out for most of that day. What I read was nothing I didn’t know already, but every now and then I am reminded of the bleakness of my situation, and I become overwhelmed by grief, hopelessness and uncertainty. The article is about NLP (Neuro-linguistic programming) which I have no interest in, so I’m not really sure why I read it, but these two paragraphs were what really got to me…

“The most important, and possibly the most difficult task for a person who has ME/CFS, is to reframe exercise as harmful, something to avoid in the same way one would avoid anything which was known to make an illness worse. We do not think it is a sign of weakness for people to avoid smoking, alcohol consumption or sugary foods, let alone dangerous drugs. In fact we may admire the willpower of people who can do this. We do not think it is silly for people who have allergies, especially life-threatening allergies, to avoid the things which are a danger to them. Physical exertion is a danger to people who have ME/CFS; if doing something can make an illness worse for a short time, and doing more of it can result in permanent and severe disability, it makes sense to avoid it. But our culture’s worship of ‘exercise’ doesn’t make it easy for anyone to take on board that it can be actually harmful.”

“We need to be committed, determined, in our battle to get the rest our body needs to fight this illness. We need to fight against our natural impulse to be active, to go the extra mile, to be the first to offer help, to sacrifice our own interests – we need to fight against our natural impulse to pretend we are just fine when we aren’t – in fact we need to be really strong in the face of disbelief, criticism, people who ‘don’t believe in ME/CFS’. You know why we must? Because all of that is the kind of person we are, and the only way we are ever going to be able to be that person again is, right now, to give that up. The more we demand our right to act like an invalid right now, the sooner we may begin to regain, little by little, the ability to be that person. And unless we are very strong and very determined to act like invalids right now, we may find that we drive ourselves into permanent invalidity, permanent severe disability.”

“We need to fight against our natural instinct to be active.” This might be the most depressing sentence I’ve ever read. Because I know, when it comes to ME, that it’s true, and I hate it, I hate that it’s true. I’m trapped in a world where over-exertion (physical and mental) will cause my symptoms to worsen and possibly cause permanent severe disability. But if I never over-exert myself and stop myself from doing all that comes naturally to me, then my mental health will deteriorate. I already take steps to avoid over-exertion. For example… Sainsbury’s deliver the bulk of my groceries and my mum tops me up between deliveries. I pay someone to clean my home. My mum puts my bins out, changes my bedding and waters my plants. After a bath or shower instead of using precious energy to dry myself with a towel I put on a dressing gown made of towelling material and lie down in bed until I’m dry. I use a shower stool. I wear noise cancelling headphones on car journeys. But despite the many steps I have taken to decrease the use of my limited energy I know I still do too much. What else can I give up? Visits from friends and family? Phone conversations? Preparing and cooking my meals? Baking? Writing this blog? Writing emails? Texting? Social media? Brushing my teeth? Washing? Getting dressed? Putting face cream on? Filling my kettle? All these things can cause my symptoms to worsen, but they are also essential for my emotional well being, not to mention my personal hygiene. So what on earth am I meant to do?

This current wave of fear and confusion comes at the same time that I’ve started taking the use of my heart rate (HR) monitor more seriously. Many people with ME use a HR monitor to help with pacing, in order to avoid over-exertion, and the post-exertional symptoms that go along with that. The aim is to stay within our anaerobic threshold. The anaerobic threshold is the heart rate beyond which we draw on energy reserves we don’t have. The threshold is around about 60% of a person’s maximum heart rate. So I should aim to stay below a heart rate of 110 beats per minute. I wear a heart rate monitor and it beeps at me when I go over 110. Saturday was a bad day, I was in day three of a migraine and I was feeling very low in mood. On a bad day I can’t manage as much as on a normal, or better day. This was reflected in my heart rate. Every time I picked something up, like the kettle, my phone, a mug of coffee, I would hover between 130 and 140 beats per minutes. I reached 136 when I put my face cream on, and I reached 167 when I made my breakfast. I started writing a facebook message to a friend and within the first sentence I reached 135. I reached 154 when I started writing this. I started to think of my HR monitor as the enemy, and was worried it was only going to become a source of anxiety. I felt like I was going to have to become a slave to my HR and ‘behave’ by staying below 110, and to do that I would have to give up, well everything really. And that made me feel even more depressed.

After I read that article and after my first day of monitoring my HR I started to wonder if I should cancel all my upcoming plans. Should I cancel coffee with my mum on my birthday this week? Should I cancel my sisters, niece and nephew visiting the Saturday after my birthday. Should I cancel the plans I have for friends to visit me over the next few months? Would cancelling these things mean I was ‘behaving’, and doing what I should be doing to get better? Or, by attempting to enjoy what little I can of this wretched life am I destroying my only chance of recovery? If, in ten years time, and I’m no better, will I look back and blame myself for doing ‘too much’? Or will I understand that I needed to do those things in order to maintain my mental health? This has been going round and round in circles in my head. There’s no answer.

I personally value the quality of my life over how many years I live. If I could be guaranteed a healthy five years, with the same quality of life I had pre-ME, knowing I would die suddenly after the five years were up, I would choose those quality five years over what I have now. What I have now is possibly decades of simply existing in a sort of non-life, just monitoring my heart rate while waiting for the day I magically get better, or the day I die. A life in which I am mainly housebound, a life starved of human interaction, a life in pain with no relief, a life without hobbies, a life without being able to explore my interests, a life without the chance of ever finding a partner, a life without travel, a life without work, a life without spontaneity. Every now and then I become crippled by the fear, the confusion, the uncertainty, the just not knowing what to do for the best. The reason I don’t know is because no one knows, not even doctors know. When you have ME you are alone, alone without having a clue about what to do to get better, and this terrifies me. I can’t bear the thought of living to a grand old age no better than I am now.

There is however something I can do to regain control of my future. There is a way I can put my future in my hands. And it begins with completing my membership with Dignitas. I’m not saying I will seek their help with assisted suicide this year, or the next, or in the next ten years, but it comforts me that this is an option. I don’t want to live out the rest of my possibly long life as incapacitated as I am now. I value my freedom and my independence far too much. My life as it is now is simply not enough for me.

A ‘Swiss death’ is not a knee jerk reaction on my part. I do suffer from depression, a common side-effect of chronic illness, but my membership request to Dignitas pre-dated my depression. I have known since 2002, during my final year at university that assisted suicide was a possible option for me. That was when my dad was diagnosed with early-onset Alzheimer’s Disease. It was then that I started thinking about my own mortality, and how I would want to die if I ever got diagnosed with an incurable or terminal illness. I never thought I’d get that illness twelve years later. The Ron Davis quote that I shared in Post Nine seems appropriate here… “The good news is, these patients don’t die. The bad news is, these patients don’t die.”. Many people think the severity of an illness is based on if it can kill you or not. Yes, a premature death is devastating. But so is a long life, where the only promise is one of pain, suffering and isolation.

By the way, just in case it doesn’t go without saying. Obviously my preference is that that I regain my health (sooner rather than later) and I go back to living and enjoying my life. That is what I want more than anything.

Post Nine. Why I Write This Blog.

I came across a blog post from The Mighty this morning and I urge you to please read it. It explains so well why someone living with chronic illness might share so much about their illness on social media. I’m aware I might have Facebook friends who think I’m oversharing, or attention seeking. I’d like to think that anyone who knows me well enough would know that this is not the case. I wonder if people think that I’m too ‘negative’. All I can say is, I’m realistic, I’m honest, I don’t exaggerate and to be frank, if anything, I probably downplay the reality of my illness. I don’t share everything. I possibly use humour too much, to make you feel less uncomfortable. And so begins why I share so much about my illness…

ME is a serious and debilitating illness, I want you to understand that.

It is unfortunate that the reality of living with ME is really very shitty, and that’s putting it mildly. So when I’m being honest about my illness, it’s going to come across, as guess what, really very shitty. ME is an incredibly debilitating illness. For moderate to severe patients (I’m on the severe end of moderate), living with ME is said (by many experts) to be “like living with late-stage cancer, advanced stage AIDS, or congestive heart failure, for decades”. ME is unfortunately such a massively misunderstood illness though that those comparisons may have shocked you, or even offended you. I am absolutely not downplaying the horrendousness of AIDS, or cancer, or congestive heart failure or any other serious and life-threatening illness. I am not looking for sympathy. I am trying to make you see ME more clearly for what it is. If being honest about my really very shitty illness is ‘negative’, then so be it. (Why is negativity such a bad thing anyway? Emotions and feelings can come in both positive and negative varieties. I personally don’t feel it’s healthy to repress what I’m feeling, I let it out, I ‘feel’ it, good or bad, and if it’s negative, I work through it, and eventually move on, and this will sound really clichéd, but maybe I’ll have learnt something from it.).

Not convinced that ME is that debilitating?*

I split my clinical time between the two illnesses (ME/CFS and HIV), and I can tell you if I had to choose between the two illnesses I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”—Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

“They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, CFS researcher and clinician, University of Miami (2006 Press Conference)

“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr. Daniel Peterson (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

“We’ve documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.”– Dr. William Reeves, former CDC Chief of Viral Diseases Branch

“[ME/CFS patients] are more sick and have greater disability than patients with chronic obstructive lung or cardiac disease, and … psychological factors played no role.”—Dr. William Reeves, Chief of the ME/CFS research programme at the US Centres for Disease Control (CDC) (Press Release AACFS, October 7th, 2004).

“[ME/CFS patients] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

The good news is, these patients don’t die. The bad news is, these patients don’t die.” – Ron Davis, California-based geneticist whose son has ME/CFS

To spread awareness.

My blog started because I wanted to raise awareness of ME. I know that there are many people in the world, including health professionals who do not take this illness seriously. I also know there are people in my life who do not take this illness seriously. Mainly due to being uninformed. But also, my friends and family (apart from my mum) only see me when I’m feeling well enough to see people. So of course you may see me and think, ‘ME doesn’t seem that bad’. Unless you are my mum, you have never seen me on my worse days, or possibly even my ‘normal’ days. You have only ever seen me on the ‘better’days, the days that I can scrounge up a bit of excess energy to have a conversation (I had no idea before ME how much energy was required to hold a conversation). You also see me putting on an act, I often pretend to feel better than I am. But also, when I am with people, I don’t want to go on and on about ME, I’m already living it, I don’t want to be always talking about it! It’s also an invisible illness, you can’t see my pain, my exhaustion, my weakness, my dizziness, my brain fog etc. You also don’t see me in the hours or days after your visit, when I am suffering for it, when every inch of me is in pain, when I don’t have the strength to hold my phone, when I’m crawling because my legs are too weak. So I am probably partly to blame for the people in my life not knowing the reality of my life with ME. The problem is, when I am feeling too unwell for visitors, I simply cannot have visitors. And the majority of my days are spent being too unwell for visitors. I recently had someone ask me how I was doing. I told them ‘really weak, achy and slowed down, like there’s an elephant sitting on my shoulders’. In reply they asked if I had a bug, or if it was an extra bad ME day. But no, it was a very normal, nothing out of the ordinary, run of the mill ME day for me. After two and a half years of this illness, people still struggle to understand. I hope this blog will help with that. Also, and most importantly, no one is going to fund research for an illness they aren’t aware of.

It gives me a sense of purpose that I don’t get elsewhere.

It gives me purpose and a sense of accomplishment. My purpose before I became ill was to help people. I worked, alongside an army of incredible volunteers, for a homeless charity redistributing surplus food from the food industry to those who needed it the most. I supported people with all manner of obstacles and difficulties in their lives, people excluded from their families and their communities, on their life journey. I could see how I was contributing to the world, to my community, to people’s lives. I could see the difference I was doing. That is what I did for a living. It was a privilege, and I was working with some of the most inspiring people I have ever met. In that job I had found my vocation in life. A friend of mine at the time told me I was her hero, that she was so proud of me. I now haven’t been to work for over two years. I no longer contribute. I’m not helping anyone. I have no purpose. I don’t feel that I have anything to offer anyone. I’m not making anyone proud. That was until I started receiving some really wonderful feedback about my blog. Then I got my first message from a stranger. A stranger who was newly diagnosed with ME, and my blog had helped them feel less alone. For the first time since I had been off work I felt I had accomplished something, something that had helped another person, and that makes my blog all the more worthwhile.

I have something that is mine, that I am in control of. It makes me feel a bit more ‘normal’.

My life is ruled by my illness. ME affects every single aspect of my life, there is not one thing that it hasn’t had an impact on. Daily tasks that were once so easy, so natural, are now mammoth tasks of endurance. All of my decisions these days revolve around my illness, I no longer have the freedom and independence that I valued so much. I’m not in charge, ME is. But my blog is all mine, I control the content, I control when I publish a post. Of course ME dictates when I can write and for how long, and it always punishes me afterwards. But I can bitch about it all I want in my blog. Mwa ha ha ha. 😉

It helps with the isolation and loneliness.

Back when I had a life (pre-ME) I would occasionally cherish having a few quiet days to myself, knowing I wouldn’t see another human until I was back at work on Monday. However, having two (plus) years to yourself when it is not through choice, when it is forced upon you through illness is horrible, and boring, so mind-numbingly boring. It is frustrating. It is upsetting. It is depressing. It is lonely, very very lonely. The isolation, I have found, can feel as bad as, if not worse, than the illness that brought upon the isolation. This illness prevents me from keeping in touch with people with the frequency and regularity I used to (I need both the required energy and a certain level of cognitive function to do that). And that results in people not contacting me as much as they used to. To go from being surrounded by people every day at work, the gym, the pub, the supermarket, the bus, or a restaurant, a cinema, Leith Walk, etc, to being almost housebound so very suddenly has been heartbreaking for me. It is incredibly difficult to cope with. Like in the post I shared from The Mighty, my world has become smaller and smaller, and I am alone most of the time. We need human contact, and my social media accounts, and my blog, have become my main source of interaction with other humans. I’m so grateful to at least have been struck down with a long term illness during the age of social media. When I share something about my illness on Facebook, whether an article, or one of my blog posts, I hope for ‘likes’ or comments. Not to feed my ego, but because it shows me that I am being heard. At least one person, for a short time, was thinking about me, and I feel a little less lonely, a little less forgotten and a little less invisible. And when, like me, you are so starved of human company, that one ‘like’ can keep me going for the rest of the day.

*Sources…

www.meaction.net

Dr Nancy Klimas. Readers Ask: New York Times Interview

Dr Nancy Klimas, Dr Daniel Peterson, Dr William Reeves and Prof Mark Loveless quotes

Ron Davis quote

Post Seven. Symptoms.

This is purely an informational post. I sometimes share articles about ME on Facebook and Twitter, but I can’t be sure anyone reads them, very few people at least let me know that they’ve read them. So occasionally I’m going to write a blog post highlighting a particular article that I want to share, in the hope it will reach more people.

So, for anyone who thinks ME is nothing more than ‘being tired’, this is for you! Below are the symptoms a person must have in order to be diagnosed with ME. I have taken this information from the ME International Consensus Criteria, published in the Journal of Internal Medicine 2011. (The ME International Consensus Criteria is an update of the Canadian Consensus Criteria, the proposed clinical criteria for ME published in 2003.)

I will highlight with a tick if I have one or more symptom from each category. I also experience symptoms not listed here. For example, for women, ME can affect the menstrual cycle. I won’t go into each and every way this affects me, but it’s only since I’ve had ME that I experience painful ovulation. I can tell exactly when I ovulate, and from which ovary, which, if it wasn’t so painful, would be pretty cool!

Click here to view the original article. Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, first published 22 August 2011.

Myalgic Encephalomyelitis: International Consensus Criteria

Introduction

Myalgic encephalomyelitis (ME), also referred to in literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.

Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion and with reduced ability to undertake the same activity within the same or several days.

Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

A patient will meet the criteria for postexertional neuroimmune exhaustion (A).

At least one symptom from three neurological impairment categories (B).

At least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C).

At least one symptom from energy metabolism/transport impairments (D).

A. Postexertional neuroimmune exhaustion: compulsory

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:

1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. ✔

2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms. ✔

3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days. ✔

4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer. ✔

5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level. ✔

Operational notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden) or very severe (totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.

B. Neurological impairments: At least one symptom from three of the following four symptom categories

1. Neurocognitive impairments

a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia ✔

b. Short-term memory loss:e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory ✔

2. Pain

a. Headaches:e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches ✔

b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain ✔

3. Sleep disturbance

a. Disturbed sleep patterns:e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares ✔

b. Unrefreshed sleep:e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness ✔

4. Neurosensory, perceptual and motor disturbances

a. Neurosensory and perceptual:e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception ✔

b. Motor:e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia ✔

Notes: Neurocognitive impairments, reported or observed, become more pronounced with fatigue. Overload phenomena may be evident when two tasks are performed simultaneously. Abnormal accommodation responses of the pupils are common.Sleep disturbances are typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage.Motor disturbances may not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.

C. Immune, gastro-intestinal and genitourinary Impairments: At least one symptom from three of the following five symptom categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation ✔

2. Susceptibility to viral infections with prolonged recovery periods ✔ (a new symptom for me, my prolonged tonsillitis, 7 weeks and counting…)

3. Gastro-intestinal tract:e.g. nausea, abdominal pain, bloating, irritable bowel syndrome ✔

4. Genitourinary: e.g. urinary urgency or frequency, nocturia ✔

5. Sensitivities to food, medications, odours or chemicals ✔

Notes: Sore throat, tender lymph nodes, and flu-like symptoms obviously are not specific to ME but their activation in reaction to exertion is abnormal. The throat may feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immune activation.

D. Energy production/transportation impairments: At least one symptom

1. Cardiovascular:e.g. inability to tolerate an upright position – orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness ✔

2. Respiratory:e.g. air hunger, laboured breathing, fatigue of chest wall muscles ✔

3. Loss of thermostatic stability:e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities ✔

4. Intolerance of extremes of temperature ✔

Notes: Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynaud’s Phenomenon. In the chronic phase, moons of finger nails may recede.

~~~

So, does this help you non-believers?