Tag Archives: CFS

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I won’t suffer for this day.

I wake up and get straight out of bed without spending two hours “gathering my strength”. I lift my shower chair into position, lower the shower head and wash, condition and rinse my hair. This is something I manage to do about once a week on a day with no other obligations, but today I got a last minute appointment with my nutritionist. I don’t rest after my shower as I normally do- I towel off, pull on my compression stockings, put on jeans, boots and a sweater. I wash my face, brush my teeth and sit on the toilet to dry my hair, resting my elbows on my knees and hanging my head low. My husband usually helps me with this, but he is at work. I clip on my pedometer, strap on my heart rate monitor, drink a glass of salt water and make tea in a to-go cup. I move deliberately, like a sloth, conserving energy in every moment. I lock the back door, make sure I have my blood sugar tester and glucose tablets, scoop up my binder of test results and go out the front door, pulling it and locking it behind me, while juggling the folder, my bag and tea. I make a point not to say goodbye to my dogs, which I normally do. I am tallying every exertion — stiff door, weighty purse — since I don’t have my husband’s help and don’t want to needlessly lean, reach or speak.

I walk slowly to my car, get carefully in and raise the seat at a snail’s pace with the manual pump handle that always cranks up my pulse. And I drive to the clinic — the first time I have driven in about 6 months. I breathe rhythmically, hold the steering wheel lightly, casually turn the corners as if this is no big deal.

I remember myself as I used to be, hopping in and out of my car all the time, driving with confidence and speed all over the city. Multitasking, running errands, getting things done without a thought. Being housebound does strange things to your brain. The first thing I thought when I got into my car was, Will I be living in here one day? Could we trade it for something bigger? I turn off the radio so no extra energy goes to processing auditory signals than is absolutely necessary. The world going by is foreign and in stark relief. I notice everything; things that meant nothing now mean something. That fence is beautiful. Those people can afford a boat. I used to run with Bowie down that path. That person is strong enough to lift their kid. Their smiles are radiant.

I drive past the cemetery and first wonder if that’s where I’ll be buried and then see the cherry blossoms and want to pull over to drink them in a little longer. I drive past the hospital and make a mental note about how long it took to get there and feel confident that I could drive myself, if needed. I look at the people in the cars beside me and can’t believe that they are probably not thinking about how miraculous it is to have freedom and independence. Everything seems to represent our precarious position in this glorious life: nothing is important, but, also, nothing can be taken for granted.

I get to the clinic early so I can wait for the closest disabled parking spot to vacate. The last spot, six cars down, is open but I can’t fathom walking that far. I think about my rushed morning, my shower, the drive… I think about my appointment, the drive home, having to get undressed… six car lengths is a million miles. I wait for the first one to open up.

There are five stairs up to the clinic and I have to go through two sets of doors. Neither of them automatically open with a disabled button. They’re heavy doors. I hold the first one open for a man with a cane, he zooms by me quicker than I could ever move. Inside, I put all my things down on a chair before checking in at the reception desk — standing while holding that weight is not an option. My nutritionist’s office is in the furthest northwest corner of the building; we stroll slowly, she asks me if she can carry anything and I answer, “it would be more energy for me to raise my arm and hand you my purse or binder than to just keep them down at my side.”

We talk for over an hour. At one stage, I get very dizzy and my vision blurs out, I think I’ll have to abort our meeting, lie on her floor, call my husband … but adrenalin kicks in and I push through it. The shuffle back to the exit doesn’t feel as long — I’m not winded from stairs this time. As I walk by the front desk, the receptionist asks if I need to make another appointment and I wish she hadn’t noticed me so I don’t have to speak again. I stop and say, “I’ll call from home so I can look at my…” I can’t find the word for calendar. As I stand there, scouring my mind, an elderly woman with a 3-wheeled walking frame motors by me and flings open the door, thrusting out a hip to keep it open while she exits. I get distracted thinking about how I would give anything to trade this illness for another. Hobble me, but give me the ability to throw open a door. I want to barter my body: I’ll give you an arm if you’ll give me energy. I’ll give an arm, both legs and my hearing, in return I just want my body to be able to recharge. Take half my remaining years away, just give me ATP while I’m still here.

I give up trying to find the word for calendar, shrug, smile and leave. Back in my car, I leave the disabled spot and pull around the bend and park. I recline my seat all the way back and do a mini-meditation, tell myself that the world is not spinning, my throat is not sore, my ears aren’t ringing, my head doesn’t hurt, and I can do this. I breathe and talk to my cells, encouraging them to rebuild, refuel, recover. When I get home, I’ll have to find the energy to cook myself food before I get into bed. We have some frozen broth and frozen turkey, it’ll be easy. I’ll need to write down everything that my nutritionist said so I don’t forget; I want to share it with my low-histamine Facebook group. I envision exactly what I’ll do, watch myself standing in the kitchen with a low heart rate, eyes focused and clear head. You are strong, you won’t suffer for this day. The universe will carry you through and there won’t be retribution. You deserve a victory.

I sit up, push in the tough clutch and drive home.

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“If a dog will not come to you after having looked you in the face, you should go home and examine your conscience. ” — Woodrow Wilson.

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What She Said…

Sarah over at Dead Men Don’t Snore wrote the following excellent post. I thought I’d share:

The Importance of Names

The illness I have is known by many names: Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Low Natural Killer Cell Disease and Post Viral Fatigue Syndrome (PVFS) to name but a few. In the UK, the terms ME and CFS are widely considered synonymous while in the United States the term ME is rarely used at all.

It is often said that a rose by any other name would smell as sweet, so when I first heard of a campaign to abolish the term CFS I assumed this was simply dislike of the word ‘fatigue’ which is by no means the predominant symptom of ME. Although I disliked the name CFS as much as anyone I couldn’t help but wonder if it really mattered; surely my symptoms would remain the same regardless what name they were given. The more I learn about the issue however, the more convinced I become that names really are important.

In 1969, Myalgic Encephalomyelitis was formally recognised by the World Health Organisation (WHO) as a neurological disease. The diagnostic criteria required certain neurological features and specifically excluded psychiatric explanations for a patients symptoms. At the time, research carried out by prominent physicians in the field was highly regarded.

In 1970, McEvedy and Beard published articles in the British Medical Journal dismissing outbreaks of ME as mass hysteria due to the predominance of female patients; the same argument once used to dismiss Multiple Sclerosis. Ignoring physical abnormalities found in more than two hundred patients at the Royal Free Hospital, they planted the first seed of doubt in the minds of some clinicians.

The name ME was used throughout the commonwealth, but the illness remained unnamed in the States until 1988 when a cluster of outbreaks and subsequent insurance claims prompted the Centers for Disease Control to introduce the name Chronic Fatigue Syndrome. Three ME specialists present at the meeting refused to sign the new working case definition with its focus on fatigue as it bore so little resemblance to neurological ME. The new name was a gift to medical-insurance companies as it implied the illness was nothing more than perpetual tiredness, a symptom so vague that insurance claims could be easily denied.

Since the 1990s the name CFS has gradually superseded ME in the UK. Many doctors reject the term Encephalomyelitis (meaning inflammation of the brain/spinal cord) even though evidence of such inflammation has been found in patients with ME.

In 2001 it was discovered that CFS/ME had been wrongly reclassified as psychiatric in a UK adaptation of a WHO publication regarding mental health disorders. Despite confirmation from the WHO that this was a mistake, the NICE guidelines continue to offer an almost entirely psychiatric approach to treating the disease.

The psychiatric lobby in the UK ignore well-documented evidence of brain lesions, reduced blood volume and cellular, immunological and cardiovascular abnormalities to insist that ME is simply deconditioning, exercise avoidance and false illness beliefs. Specialist testing (SPECT scans, mitochondrial analysis and tilt-table testing) to confirm physical abnormalities is rarely available on the NHS as doctors cannot justify the expense of tests that don’t lead to any subsequent treatment.

Prominent psychiatrist, Sir Simon Wessely, claims that ME can be successfully treated with Graded Exercise and Cognitive Behavioural therapies (GET/CBT). The government, while failing to fund biomedical research, has spent millions of pounds funding the PACE trials to test this theory. Full data from these trials remains unpublished despite widespread calls for its release.

The selection criteria for PACE excluded the severely affected and those with neurological symptoms but included patients with other conditions such as fibromyalgia or psychiatric disorders. This means few if any of the participants met the criteria for ME, yet the results are being treated as universally applicable. Claims of Wessely’s ‘cure’ for CFS have flooded the media when his trials at best show only moderate improvement in a small number of patients.

Measurable deterioration after even minimal exertion is one of the defining characteristics of ME, making graded exercise potentially harmful. Like many ME patients, CBT made no difference to my symptoms while graded exercise made me substantially worse. Every book or article I have read of CFS patients being cured by GET or CBT described a set of symptoms and a disease process so different to my own that it was hard to reconcile them as the same disease. Put simply, CBT and GET can be very helpful for patients suffering from general fatigue states such as mental health disorders or post-illness deconditioning but if these are the cause of a patient’s fatigue they do not have ME.

Unlike ME, CFS has no internationally agreed definition. The catch-all term encompasses everything from fatal neurological disease to any persistent fatigue of undetermined origin. Definitions of CFS rarely require (and often preclude) physical or neurological abnormalities but may allow for psychiatric causes, making the terms CFS and ME mutually exclusive in such cases.

Chronic fatigue can be a symptom of almost any illness but a single normal blood test is often all that is required for a diagnosis of CFS. It is estimated that only 40-60% of CFS patients meet the criteria for ME. Following diagnosis it is rare for further tests to be carried out and patients receive little support or intervention. This is akin to diagnosing frequent headaches as Chronic Headache Syndrome with no further tests to determine if they are caused by stress, depression, migraines or a brain tumour. It is common for conditions like MS, LYMES Disease and even cancer to be misdiagnosed as CFS, often with irreversable or fatal consequences.

So long as no distinction is made between the many different causes of chronic fatigue, patients around the world will be denied the proper recognition and treatments that their illnesses deserve.

So long as the ill-defined category of Chronic Fatigue Syndrome exists, patients with severe neurological disease, post-viral fatigue states and psychiatric disorders will remain grouped under the same broad umbrella and subjected to one-size-fits-all policies that are useless to some and harmful to others.

So do names really matter?

When patients with serious neurological symptoms are treated as having psychosomatic disorders and end up dying through medical neglect, forced into inappropriate treatments that make them worse, or taken from their families and placed into locked psychiatric wards, than yes, it really does matter.

So I’ll continue to refer to my illness as ME and not CFS in the hope that one day the different pathologies grouped under one vague name will finally be recognised as the disparate conditions many patients and specialists already know them to be.

Over to you:

If you have a diagnosis of ME or CFS (or know someone who does) which name do you prefer to use, and do you think it matters?
What are your own experiences of GET and CBT?
What tests were done to diagnose your condition and have you been offered further tests or treatment since diagnosis?

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Mind The Abyss

I highly recommend you watch this. It brought me close to tears. His symptoms are nearly identical to mine… The vertigo, night sweats, crushing headaches… Only he had no pre existing conditions. This evil strikes anyone, it seems, at any time and, if I can recognise this constellation of symptoms, why can’t doctors even talk about it? Why is it such a dirty secret?

http://m.youtube.com/#/watch?v=GyxUVkfZ1Hk&desktop_uri=%2Fwatch%3Fv%3DGyxUVkfZ1Hk

If that link won’t let you open it, you can view it on the Phoenix Rising website ~ it’s the second video down.

PS: Thank you, Curiosity, for posting this video on your blog. xo