Thank you for helping me get a part for my sleep apnoea machine, medications and food.
I keep saying it's like the start but you don't know what that means... so I will dig up a piece I wrote. It articulates what the first 10minutes of the day feels like (excluding my now constant chemical allergies, POTS and neurological symptoms; seizures, tics, tourette's, convulsions, dystonia, paralysis, apnoea while awake, language issues, motor skill dysfunction etc).
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Imagine that you are in your bed. You are under the blankets and they feel very heavy, pinning you down, weighing on your aching body. You are so uncomfortable, but even readjusting, turning or moving your limbs is really hard. It’s too much and you are so exhausted. You’re in that horrible place between asleep and awake where people go when they’ve slept too much, but you can’t open your eyes. Your eyelids feel weighed down. When you finally manage to force them open, you are confused and can’t work out where you are, even though it’s always the same, you don’t recognise your room. Fighting with the blanket in an awkward struggle you become aware of the sensation of what feels like tiny bugs running all over your arms, and the muscle just below your left eye twitches incessantly; the combination of sensations make you feel like you’re on the verge of madness. You summon the strength to get off the bed; you stand and immediately plonk back down, the dizziness overcomes you. You sit for who knows how long, to still your head, you have no concept of time and the loud silence that used to bother you, feels nice, comforting. When you work your way into an upright position again you can’t remember if you were going to get a drink or go to the toilet; you are so thirsty all the time and your throat aches. In fact you drink over ten litres of water a day, and it makes you need the bathroom so frequently it feels like an exercise routine. The fog lifts slightly and you realise that the need for the bath room is the more insistent one so you start to walk in that direction, only to run into the wall because you can no longer sense where you are in relation to things. You can no longer take anything for granted, especially talking, walking, and functioning as the useful human being you are accustomed to. Everything is a struggle that requires intense concentration, which you of course cannot muster.
I’ve just taken you through what ten minutes of one of my day is like. Hopefully it has given you a bit of an insight into what sufferers of Myalgic Encephalomyelitis experience in their daily struggle. I’m going to talk further about my onset, the damage ME has done to my life, the general misconceptions about this illness, and lastly and more hopefully, what you can do to help.
I contracted viral and bacterial infections simultaneously Easter weekend 2001, having been sick at work for months before but I kept pushing through. But, that was it. I was hospitalised and then spent the next 2 years sleeping eighteen hours a day. When I was awake I was not really awake. You know how it feels if you are a drinker and you have imbibed way too much, and then somebody tries to wake you up from a deep sleep. That is how I felt for the six hours I was awake. I can honestly say I don’t remember anything from that time except the impact of September 11.
This illness has turned my life on its head. Aside from losing six (now eighteen) years of my life, I lost my job and had to move home with my parents, who were struggling themselves. A lot of people I worked with thought I was a hypochondriac. When it was suggested I might have Diabetes Insipidus, people were kind and understanding. Then Diabetes was ruled out and a colleague whose brother had Chronic Fatigue Syndrome (an incorrect term for the diagnosis but the only one available to doctors in Australia then) suggested perhaps that was what I had. Indeed it was, and the change in some people’s behaviour towards me, upon hearing that diagnosis, was upsetting. Some friends, work colleagues and even a member of my family treated me quite harshly and with a lot of scepticism. Even though I was clearly very weak, and often fell asleep mid-conversation, they were unable to recognise or understand the gravity of the situation that I was facing. The fact that some days I looked okay, normal even, compounded the problem. Those of us with ME/CFS have very little social contact; so on the odd occasion when we do venture out, we use all our energy to seem okay. Therein lies the problem.
In 2003 a working party in the US pushed for a name change because it argued the term chronic fatigue focused on a single, poorly defined symptom (fatigue) and this promoted a profound misunderstanding. ME/CFS is diagnosed, after the exclusion of other possible illnesses, by the main symptom of Post Exertionsl Malaise- severe, unrelenting exhaustion that is common in all sufferers. But there are so many other debilitating symptoms, and the chronic fatigue tag really doesn’t cover the range of symptoms or the severity of the illness. We all suffer differently, every one of the estimated two hundred and fifty thousand Australians who live with this illness. I have so many strange and varied symptoms and yet my combination of symptoms is unique to me. I suffer with insomnia, aching joints, dizziness, loss of vocabulary, cognitive problems, loss of spatial perception, muscle twitching, incessant unquenchable thirst, sensitivity to light and sound, and the list goes on, there are many more. The severity and combination of symptoms I suffer with and those that the next person suffers with are very different. At its worst, Dr Mark Loveless, Head of the AIDS and CFS clinic at Oregon Health Sciences University has likened ME/CFS to feeling effectively the same every day as an AIDS patient feels two months before death. But the variance of symptoms from one sufferer to the next is why treatment is so difficult. What works for me, may not work for the next sufferer. So we each have to seek out our own solution and through a combination of trial and error, find the treatment that works best for us.
As the now sadly deceased Alison Hunter said, ‘The fatigue is not every day tiredness, experienced after an energetic day’s gardening. It is an exhaustion of the body and mind, so profound that it becomes a concerted effort to think, walk and sometimes even move, sit, eat or breathe.’ She is one of the many who have died from complications of this illness. Before there are more, we need to get people to take this illness seriously and then we may have some chance of getting more funding to find a solution.
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This was hard to read. Not much has changed. And I am so much more acutely ill. It's time for a revolution. Please find Unrest the documentary and watch it knowing these patients have the good fortune of access to treatment, a huge support network and money to access care. Or look up ME Action for your country on all social media platforms.
As always your help is greatly appreciated.
Masses of love, light, blessings and gratitude
Marz x
"Our hope now is to help her have a life. If you want to help Marzi to ensure she keeps her head above water and keeps up bill payments and can afford medications please support go to:
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or
PayPal aid4amara@gmail.com
or
Bank Westpac A Campbell
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Please share widely and donate as much or as little as you can. We thank you for following her journey and supporting us and The Amara Campbell Foundation 😊
💛 Aid 4 Amara team 💛"
