(This is one of several posts i have written for ME Awareness Day – click here to see my main page and link to the other things i have written, and click here to see what everyone else is blogging about!)
I have been mulling over what to write about for ME Awareness Day 2009 for the last few weeks… there are so many issues that i could talk about, personal, political, medical – but in the end i thought i would keep it simple (that was before i started to actually list my symptoms!) and share with people all the symptoms i have experienced in the last few years (I have been ill for over ten years but will focus on the last three years since i left my part-time job when things got worse again. Apart from the initial period of illness, the past three years have been the most consistently severe).
I want to convey the very important message that Chronic Fatigue Syndrome (my official diagnosis) IS NOT JUST FATIGUE!!
(I should mention here that i also have another (additional) diagnosis of “POTS” (Postural Orthostatic Tachycardia Syndrome) which is a collection of symptoms relating to my Autonomic Nervous System not working properly. Apart from the tachycardia and nearly passing out, I cannot really separate the two illnesses or sets of symptoms as they are interrelated and i have no idea which causes what much of the time, never mind if they are actually part of the same condition/illness. Quite a lot of people with CFS/ME also have POTS and most others will have symptoms of autonomic dysfunction to some extent; particularly those who are moderately to severely affected. These can include: Dizziness and lightheadedness, digestive problems, problems with standing and being upright (feeling much better lying down), lack of temperature control, circulation problems and blood pooling in lower limbs, and many more).
I do not like the name Chronic Fatigue Syndrome (CFS); i think it does minimise the complexity of the illness and lead to many people claiming to have it, or being diagnosed with CFS, who actually do not have it. People can be tired out and run down for many reasons and this can drag on and affect their lives very negatively, and i have every sympathy for them, but it does not mean they have the same illness that i have. Maybe we can all get appropriate treatment once this is sorted out. I won’t get into all the ins and outs of this issue here (the variety of diagnostic criteria used to diagnose and the implications this has on credible research into the condition/or conditions) but i feel it is really worth emphasising the full range of symptoms and bodily systems affected by CFS/ME, many of which perhaps do not get mentioned.
It particularly frustrates me when doctors and other medical professionals (who should know better) say to me, when i am feeling particularly bad at an appointment, and have lost the ability to speak clearly and express myself:
“Yes, I know, you are feeling very tired today”
I suppose they are attempting empathy and trying to make me feel understood, but i just scream inside that they know nothing if they still think of CFS/ME in this way. I do NOT feel tired: i feel physically and severely ILL. I feel that essential bodily functions/systems are shutting down one by one and it is truly frightening to experience my body in this state of crisis.
I often feel i am moaning on too long for people to tolerate if i talk about my symptoms in detail, in fact i often do not focus in on them myself unless they are severe as it is just easier to get through the day by distracting myself from them/ignoring them as much as possible… but here they are in all their glory…
This is just a personal picture,of course, and other people will have a different set of symptoms and will experience my more minor symptoms as major and vice versa. I have found that the symptoms seem to evolve and change over time, some improve, but often others move in and take their place, so it feels that quality of life does not change much overall.
The implications of these symptoms obviously affect every single minute of my life, and everything i (attempt to) do. Everything i do manage to do comes at a high “price” in terms of having chosen it over other things (this often means choosing between things that others would deem as all “essential” tasks to do in a day) as well as in terms of what is officially called “post exertional malaise” or otherwise known as “payback” (if i do something that uses too much energy/exertion i will then have a period of hours/days/weeks where i am operating at a much lower level of functioning and experience many more symptoms, and more severely, than usual) so every little thing needs to be considered as to it’s importance in relation to how strong i am feeling at the time, a wearying decision-making process in itself, and always a gamble…
I have made two more pictures like this, about other aspects of ME: the impact of these symptoms on my ability to function, and the things that people (mostly medical professionals) have said to me about my illness. Click here to read that post too!
Please do not use my image/artwork without asking!
This work is licenced under a Creative Commons Licence.
Symptoms: Vertigo, noise sensitivity, tightness of scalp, sensitivity to light, lack of stamina, nosebleeds, dizziness when standing, sitting, moving, speaking or concentrating, tinnitus, TMJ (Jaw joint) dysfunction, breathlessness, light-headedness, eye muscles slow to react to light/focus, tension headaches, clicking of back, neck and other joints, facial paralysis, dry eyes, constant thirst, aching eyes, blurred vision, mental fatigue, tri-geminal neuralgia, neck, shoulder and upper back pain and tension, painful points on scalp and upper back, hormonal issues, reactive depression, swollen and painful lymph nodes, shivering/goose bumps/spasms when not cold, sensitivity to movement in visual field, tachycardia (POTS), memory and concentration problems, difficulty speaking, pallor, weak bladder, almost fainting, pins and needles/severe itching of legs, shaking, muscular weakness and fatigue, ticks/twitches in muscles, lacking in energy, paralysis on waling, defecation syncopy, IBS, freezing cold feet when body hot, lack of stress tolerance, movements slowed, need to be horizontal and have bed-rest in day, weight gain/loss, post-exertional malaise/payback, disturbed/prolonged sleep, generalised weakness, lack of body temperature regulation, excessive sweating, hot flushes, trembling leg muscles, walking difficulties, sensitive skin – easily irritated and painful to touch, heavy aching thighs.