What is ‘Yuppie Flu’?
Here is a web search answer:
“There is no virus called Yuppie Flu. It is a name given usually to a disorder called Chronic Fatigue Syndrome. Conditions usually are called a “Syndrome” when the underlying cause of a cluster of symptoms seen similarly in multiple patients has not been identified yet. This is the case with Chronic Fatigue Syndrome. If you don’t know what is causing it, you don’t know what would prevent it. So, there is currently no prevention.”
Many don’t much like the condition being called Chronic Fatigue Syndrome either because it implies that ‘tiredness, albeit severe, is the only symptom and, it isn’t.
Let me break that down for you because most can barely say it and even if they can, it just doesn’t shout out what it is. It is the proper given name to Chronic Fatigue Syndrome. It is broken down into:
Myalgic is used for muscle pain and/or tenderness. The word encephalomyelitis means inflammation of the central nervous system, which is made up of the brain and the nerves of the spinal cord.
I bet you are glad you had that explained to you so, let us begin.
Let me get one thing very clear here, it affects each person unique to them so it is not right or fair to make a grouping of type for the condition. The range will be somewhere between mild discomfort and feeling rather sleepy to severe and/or changing pain which can be anywhere and everywhere of the body and change daily if not hourly. That coupled with debilitating tiredness.
To my shame I can say that back in the 80’s I was known to refer to Yuppie Flu as poor middle classed buggers looking for an excuse not to work.
How things can come back to bite us!
Sleep is not helpful. By this I mean, it matters not whether or how much I sleep I never feel better. Let me clarify that. Let me use a metaphor…
Imagine your phone battery being on 20% when you go to bed and not putting it on charge, it remains, if you are lucky, at 20% but might actually be 10%. When it gets to 5% or less shutting down is imminent.
That is a hopefully useful way to describe how I feel after sleeping. Every moment of every day I have a desperate need to sleep … running on 10% battery. Occasionally, on some days, I might find my energy at 20% briefly and get all excited and think that this is a really good time to catch up on all those things my tiredness stops me doing except, like with the phone, that 20% is only going to remain for a short while even if you don’t use it … if you actually do use it you’ll kill the battery in no time and when it’s gone, it really has gone.
How does that feel I might hear you ask if you remain interested at all?
Its panic mode, I shake, I struggle to think, to absorb information. Physically moving becomes very difficult or impossible. The only safe space is in a bed. Imagine you’re having a really important Skype chat then you see the battery is about to die, what do you do? You have 10 minutes of things left to talk about yet only seconds to get your phone to a charger!
Trouble with the analogy is it suggests there is something which gets the battery to 100% again, there isn’t at all.
It might be presumed that the energy level only rapidly depletes when I am physically doing something, sadly not the case. Even concentration can drain my energy to zero.
Then there are the random nonsensical pains. We like to think if we are in pain we can think of a time where we overdid it a bit so that’s the cause and it will inevitably get better over time. With M.E. this might be the case but, most times there is no cause and likely no real cause of the pain, it is my nerves telling me I have pain in a part of my body which is not actually injured. For several days now I have got a very random shoulder/chest pain. Most of the time I feel nothing and then I feel like I just got stabbed with swear level excruciating pain.
When I move so many muscles hurt I cannot really narrow it down. I go to get up and it’s like my brain is sending the signals and my body is ignoring them. I eventually fight through that but I am not stable, I can and do fall or, most likely, keep staggering until I harshly bash into something solid. That’s regular, I mean many times every day.
My physical confidence levels are at an all-time low. Holding a cup I always feel like I am potentially going to lose my grip.
Mentally, what is it like?
I sometimes wonder if I am going totally loopy the things I do. Put this in context. You already know I am crazy tired all the time so, think how you act when you are overtired. Would you say you are firing on all cylinders or you are in autopilot mode?
It is very common for me to forget to take the medication I have in my hand. Just one small distraction and the moment has gone, the tablets are back on the work surface and I am elsewhere. Making a tea for more than one person is horrible. I have to really concentrate on every stage of it, nothing it automatic. I look at the containers and read the word ‘tea’ and ‘sugar’. I have to choose cups carefully to represent the person I am making for so I don’t get muddled up. I have been known to forget someone, often me. In my mind I am making this drink for 3 other people and I make 4 except, somewhere during the process I just remember the 3. To make matters worse, I may not even notice until ages later when I realise I am really thirsty.
I was trying to maintain ‘normal’ sleep patterns, bed before midnight, up by 9am … doesn’t work. One of the symptoms I also get is insomnia, I either sleep or I don’t. How I feel has nothing to do with it. Even if I sleep right away I am awake again maybe 2am and am hurting too much to sleep again so need to take some medication for the pain. It’s often then 5am before I return to bed able to try again. I sleep then (probably) … until gone midday! Sometimes, I just randomly wake up at 8am or that sort of time, it isn’t consistent. Forcing myself to get up doesn’t work. Back to our phone analogy, the battery is still dead. I am not going to function. I can go through the motions and often do but I am not really in charge of my mind and body. Often I will wake up again an hour or so later with my legs dangling out the bed having gone to sleep again during my attempt to get up. I really won’t risk driving feeling like that. Sometimes I have done, it has been unavoidable and it is just one of the scariest things ever. I will avoid that situation whenever I can. My plan is to switch much of the driving onto Dennis once he has a licence.
With careful pacing I can rest for some days doing near nothing then be able to drive a distance. I will always plan into that a sleep the other end as a precaution. After making that effort I then get stabbed in my back as I become incapable of anything for a couple days afterwards.
If I go to a social event it is so difficult to remain awake no matter how much I am enjoying it. Even going to the cinema I have often slept through some really good films. I don’t even realise it is happening. My eyes hurt with the strain of keeping them open and then they are closed and I sleep.
Right now is around 1am, I am mega tired. I got up today at 11:30 I think it was and forced myself to stay awake. I forgot to have lunch. I had a friend over and was just struggling so much not to let him see how very tired I was … I even got him to make drinks so I could at least shut my eyes for a while.
Body temperature fluctuations … I imagine many women going through or who have been through the menopause understand how horrible it is. I assume it is what I am experiencing except that there is no male equivalent to the menopause. At 5°C I can still go out in shorts and t-shirt. That or I am freezing with my jumper and coat on. At normal house temperature of around 20°C I’m sweating, physically getting Prince Andrew soaked sweating (that might be too topical for you). There is nothing consistent about this either. I am sitting here, the room is 21°C and I’m sweating from the waist upward and my legs and feet are feeling a chill whilst simultaneously feeling hot!
That’s an overview of the M.E. so, call my a Yuppie!
As if this was not bad enough I have Urticaria, a skin condition. It means any pressure on my skin will likely become a hive which is a raised and very itchy experience. Alternatively, whole areas of skin become inflamed. I have learned not to touch it because it makes it worse. My head, if I don’t get my hair cut really short like I need to do now, has spots all over it which makes me feel like I have fleas! (I don’t). This is caused by the pressure of my hair sitting on my head, how crazy is that?!
On top of this I have Allergic Rhinitis which is a more internal respiratory problem. Symptoms can vary loads. I may just randomly sneeze a few times, feel like I have a bad cold, struggle to breath or have flu like symptoms or any combination. Thankfully it isn’t triggered by nature so flowers and pollen are fine; it is just about most other chemicals with perfume being way near the top of the list. I went through loads of tests and sure enough, the cough I have had (which also keeps me awake) for over a year is rhinitis related, I am coughing because of, most likely, perfume within the home. I am not going to tell the household to stop doing what makes them happy, some consideration would be nice such as not in the same room but everyone is entitled to their own way of living and if that means I have this cough then that is how it is. Cheap paint fumes are way up there which is why it looks like I am a lazy bastard who always leaves anyone else to do the decorating. I want the change; I don’t want the associated illness and have been known to move out for the duration of the decorating.
Invisible illnesses like this are so easy to dismiss, so easy to say, yeah, I feel like that sometimes and belittle the condition … people say “so, you just feel a bit tired then?”
They give well-meaning advice like getting plenty of exercise not realising that moving about makes these things so much worse. Doctors blame it on anxiety or depression because I admit I feel those things. Even though I tell them that it is my health problems causing the anxiety and depression they still smugly insist I am just muddled because I am depressed! Honestly, if you had what I have, you’d eventually have some really shit feeling down days too!
Why do even experts know so little?
Because there is so little research done on it. Because of the Yuppie Flu label it has for years been dismissed as laziness and excuses. There is no known proven cause and certainly no cure as yet. It is just easier to treat symptoms. Indeed, what else can be done? If doctors still believe it is ‘all in the head’ (which in many ways, it is), they treat it like a mental illness and recommend Cognitive Behavioural Therapy [CBT] (effectively acknowledging with help how I am living my life all wrong) and graduated exercise [GE] which, as I mentioned before, actually makes it considerably worse, there are no remedial benefits for me in that albeit there is a clear health benefit which seems totally pointless if I cannot get out of bed for long enough!
Most counties in the UK do not have a specialist in this at all. The closest one to me is around 50 miles away and they specialise in CBT and GE! Even they are apparently not updated enough to recognise that this is no longer recognised nationally as an effective treatment so, what damn hope do we have?
It is very debilitating but … because it is so little understood and has so much associated prejudice it is nigh on impossible in the UK to get disability benefits for it. I am already on a hiding to nothing when I cannot supply any corroborating evidence to support my claim other than my GP who still insists on calling it CFS, at least one step up to Yuppie Flu. She says that is all she is obliged to do, confirm my diagnosis.
I used to have a consultant for my skin; he left the county and was not replaced. I get no treatment for my rhinitis from a specialist; it was diagnosed when I was 20.
Did I mention, it also affects my already crap hearing. It is like I cannot focus on what is being said. Everyone else follows it but I am just baffled. I can hear it; I just cannot focus on it. Imagine you can hear it is Bohemian Rhapsody but you can’t make out the words or even whether or not it is Queen or Panic at the Disco! Trust me, I feel pretty stupid!
I know I have written about this before but, I just think it helps to explain why I don’t get out much these days, why I am not apparently making an effort to visit some really amazing friends that I have. It is because I really am not sure I am comfortable with arriving, having a tea then asking to borrow a bed for a few hours with everyone I know, just a tiny select few. It also hopefully explains why the notion of paid employment it not a viable option. Interaction with people is one of the most energy zapping things I can do and when I get to the end of that 10% battery life I can and often do sound like an idiot. In many ways I can see the funny side but … it isn’t funny, not really.