RE: Mental health being strong in severely affected/housebound ME.
This is just my
opinion as 30+ years sick (slow onset) and 23+ years severely affected never getting out the house since. (Experiences may be opposite of mine, identical, or similar). So this is just my experience, and not in anyway a statement of how others feel, as well all feel different. We can, however, share or at least recognize mindsets that utilize the ability to cope in very bad situations by using various methods to stay positive, or stay motivated not to give up hoping.
With nothing, you can't miss what you never had
if you get sick as a child, you don't know what it means
to be an adult, in society. So I don't.
I can dream of it, but can't lament over no longer being a teacher, or a parent, or a violinist who was popular and in demand and etc etc. As I was never anything, I remain, nothing. Maybe this isn't common but of the people I've talk to (who also got sick, e.g. age 12-18), they
all seem to have this same psychological profile of acceptance of not yet having an adult life, and this makes them (
now they are middle aged) crave it
more and by wanting it more, they (and I) don't suffer from depression nb: I am not suggesting depression is a choice (I have anxiety and don't chose that either), but in people fortunate enough not to be depressed, this is how I
personally cope and others like me....the desire for wanting better and holding on for that day, free from depression, I can do this, no matter what.
Holding on for decades, requires quite a lot of willpower and determination, but this is almost handed to you, because there is nothing out there, so you have to cope. You have one choice with severe ME. Take your own life, or don't. Sure it's not as easy as that, and so many factors come into play and people I'm sure swing between thinking one way or the other and I do to at times (depending on what life events happen), but still, if you're alive and breathing, this is a good, this means there is always a chance you will survive and live to see the day you get treatment. This 'belief', I feel keeps you going. I think this, now things have gotten so bad, each day I can't breathe without a horrible insidious muscle weakness. I'll just grunt away and breathe in a horrible way as if my diaphragm muscles are worn out and I've run out of life force. It might kill me, it might not. You just have to pray it won't, and you don't need to be religious to pray, you can just have inner faith, inner belief. Am I scared? Yes, no one will refer me for respiratory tests or admit me to Hospital, but this fear is something I have each day of my life now, I've grown accustomed to it. Each day you wake up alive then (always have breathing emergencies in my sleep), is a day to celebrate, even if you can't stand up you are not deceased. Keep going them, don't stop believing one day you will be free from this, that's what I do, with all symptoms.
There are no support services for ME in the UK, and as for severely affected, many can't even see a doctor!
(Refuse to do home visits and patients can't usually get to appointments even if granted one). There are no specialist nurses (unlike MS) and no clinics to contact who are designed for people with ME. There are (or were) CFS/ME clinics, but these do not cater for ME at all. Treatment in the UK is CBT, GET, Antidepressants, and being told to pace yourself guided by an Occupational Therapist, or even a Physiotherapist!. These aren't rational treatments for people in wheelchairs or in bed who can't even prepare their own food or answer the phone, they also aren't evidence based. They are instead a promotional exercise, an advert left on waiting for the film of 'life' to restart after the commercial break of the psych lobby..it never starts though and we're ALL still waiting for LIFE be it mild, moderately, or severely affected and that feeling of loss is unquantifiable. So we don't dwell on it daily, totally pointless and only makes us feel more helpless. So we do the opposite, we grow tougher with each wasted year and cope with things we never thought we could, that other people would be quivering mental wrecks begging for help, conversely, we dust it off, regroup and accept it, this is what uncontrolled chronic disease does to the human body if you don't research and treat it.
In my view, humans with crippling physical diseases cope mentally the more they get sick because of inbuilt reactions to suffering we have to make us survive mental and physical torture (e.g. pain, e.g. chronic infections not allowed treatment, e.g a myriad of disturbing neurological symptoms that have no diagnosis as
no post diagnosis assessment of NEW symptoms/signs of other conditions has been permitted or arranged).
This perhaps stems from 3 factors that combine in a cohesive 'label' to make you targeted by the medical professional as a 'loser', doctors who could care but choses not to (the real losers!).
Due to this...
1) You inwardly accept as an ME patient, no evidence based treatment exists and so don't seek treatment. If it does exist for others (almost exclusively Americans who can get health insurance or buy into health care plans) you can't work to earn money, so you have no money. With no money, you can't buy it anyway, even if other people can have it. It's therefore pointless to lust after it and think 'if only'. You adapt to being a 2nd class patients, when 1st class patients can get Ampligen, Antivirals, Rituximab. These are the Elite 0.1% of tens of millions of people, only a few of these patients exist in each state. No point being envious, you aren't one of them, but a lower grade. Fate has decided this, just as fate gave you ME and your sister or brother is healthy and has a job, friends, their own children and a life. So we have to deal with it, and we do. Not easy, but we do.
2)Disbelief from doctors that may offer you some help (experimentally), but won't. They mostly think that the severely affected really are, and are simply malingering more than the moderately affected. Mistakingly, they tell you that their 'other patients' recover and you can too, just try harder and learn to cope better the say (ironically).
3) Psychiatry who tell doctors in the UK: Do not refer the CFS patient into hospital, as tests prove nothing, and it costs the tax payer money. GP's read this and act upon it. In the UK, newer incentives now are given to GP's (for all patients) that if they don't refer patients to hospital (costs money), the GP surgery is rewarded financially. Naturally, if they can, the doctor then doesn't refer the patient. This is for average patients, never mind PWME who then have to deal with the consequence of the MRC (PACE trial) Psych Lobby historically coming together behind the scenes to deliver a cost effective positive message about 'Chronic Fatigue' to government, ME,never gets a look in, other than being said to be a story of Myth. So ME became a Myth. Neuroinflammation need not be present, and hey presto, the PACE trial was duly described as ''a thing of beauty''.
As a cumulative consequence, the multiple secondary conditions PWME (severe) develop are rarely detected in society (accept in ER visits), and the ME patient incorrectly may mistake all their symptoms are down to 'ME' - the brain. Some patients (of any severity) can pay with their lives for this error, when they discover they have Cancer or an infection that could have been treated, or their polyuria and insatiable thirst was actually Diabetes.
Myself and others severely affected don't go to the hospital or call a doctor, largely because of
humiliation by medical professionals on arrival, and the disgusting way people in the UK are treated: both verbally in medical records, and face to face. So when we struggle to breathe (for example), I just do that, at home and never report it. Same with chest pain, same with partial seizures when I don't really know where I am, or what I am, such as after eating, passing urine or standing (episodic of course). So
many patients LEARN not to report symptoms, as a coping mechanism. We do it, because when we tell people how we feel. This is dangerous to patients, but.....
1) The cause cannot be found (often because no tests are run) and the doctor becomes tired of failing to help you
2) The cause cannot be found and (in socialised medical health care) the patient is blocked from re-attending medical appointments, by these appointments no longer being offered. So now way back in
unless you move house.
*In America this is different as if you have money,you have private health care, and can pay to see a doctor. In the UK, with no money, In tax payer funded health care it's up to the discretion of the doctor, if you are 'allowed' to have an appointment or not - including being seen in ER. (Nurse decides if you go through the door and wait or hours to see a doctor). 5hrs + sometimes. People with severe ME or POTS + ME can't possibly sit upright that long and there's no where to lay on the floor, or you can't lay on the floor as you're too weak chested and must sit up!!! (Catch 22). So a result, patients learn to cope with much more severe symptoms, and levels of pain, that would put healthy people in hospital, no question. Long term this is counterproductive, but this is how we are brainwashed by a system that deems us malingerers and fakes,
Unlike the Canadian system, the UK will not let a patient go straight to a specialist in a Hospital outpatient appointment (e.g a neurologist or cardiologist), they are first pre-screened by a desk doctor, a GP (out of the Hospital), with no specialist knowledge!. Naturally, they don't believe ME exists, so usually they won't refer you. The patient thus doesn't get seen, or cannot get to the hospital in the first place (too sick) and the hospital consultants won't do home visits. T
he psych lobby benefit from this, as Hospital doctors, rarely see what severe ME does to patients and the common neurological conditions they develop alongside other neurological conditions that are accepted.
So, in my view:
These are explanations why severe grade patients, globally, cope so well, at least as well as mild or moderately affected as they have NO OPTION.not to. When you're not as sick, you have
more options. You can get mom/dad/husband to drive you down the freeway to the Hospital to have tests, you might be sick on the way and turn white as a sheet, but you get there, somehow, you get there and you kiss the ground. As time passes, and your hormones fail, and you develop other conditions on top, so now instead of travel sickness, you are now so dizzy you get sick in your own house just moving your head, or intermittently pass out when you pee, never mind being driven in vehicle with all the movement and noise, then chronic vertigo and neurosensory overload will prevent you going out the door, never mind the panic attacks and the photo-phobia, or the profound weakness, cardiac issues and mental confusion that in summary, make you feel terrible to the point of simply laughing how ridiculous the idea is of going down the road to see a doctor. So the more sick you get, the more trapped you get. The more trapped you get the more you adjust to being in an open jail, at home. From this you become institutionalized and naturally over time develop agoraphobia or get incredibly over loaded over being with other people (even just being in an ambulance), because you never see them. When you get into a Hospital lobby, you're amazed at the mass of people, the light ,the noise, the smells, the movement, the scale of the place.This is all incredibly overwhelming and your nerves that are always on tenterhooks at home (if you have autonomic dysfunction badly), then put you in panic mode, calmly waiting for a hospital appointment you may have waited a year for.
But....you know this. You know this your disease. You don't burst out crying, you might have to have Valium to bring your BP down, but the hellish experience, you did it. You might not come back again, but you can look back and say I had the ovaries or balls to do that, albeit with a paramedic or someone else helping you. You also cope with the rejection, you predict the neurologist will be useless or rude, and they are, so it was all a waste, all a stress over nothing, will relapse you, but you dust yourself off and within a day, any negativity is gone and you're back to your old self. Rejection, accepted, as rejection is what you're used to from the medical profession. Giving up is not an option, impossible.
The more sick you get, the less people believe you, and the harder skin you develop knowing people look down on you as a patient in your own family even, never mind friends (ex friends). I also think, although disturbing, the betrayal by family members, makes or breaks you. It makes me. I await the day to calmly say, ''I told you so'' and leave it there.
You become mentally tougher from this, you won't let skeptics (of any form) beat you, as in your current state, you must not lose, you're in far too a feeble state to succumb to mental health issues now. Later, fine, but not now.
So your mental health levels rise to cope with physical disabilities -
the exact opposite the psychiatrists claim happens in ME. You accept loss, there is nothing appealing about yourself now you've lost everything, but what is appealing is the
future, you place significance on hope, and you hope that you will be released from your torturous existence, not from suicide, but by medical research deducing how this all happened, and then getting in the queue like everyone else, for the magic 'pills'. Even if this only works 20%, this was worth waiting a life time, as with 20% better function you can experience more life, and achieve more. So compromise of future treatments not working particularly well for severely affected long term patients, is inevitable and sensible. You plan for this now, years in advance, you train yourself for setbacks in treatment failure, as this is all you've ever known!
Everything in my life is ruined, but I cope, and don't suffer from depression, as if I became depressed, they win. They being who
purposefully did this to us, pretending they were 'just trying to help', by lobbying behind the scenes to gov't health agencies that we didn't have a neurolgoical disease, and we were simply mentally dysfunctional, and wanted welfare handouts for secondary gain. (Sick minded disturbed people, convincing government health agencies, we are sick minded disturbed people!). What could possibly go wrong?!
If I give up, I am lost and won't be able to battle them in court to sue them in the future, what I stay alive for, justice for me, and just for all the other patients who have died along the way, people who never made it. Their deaths must not be in vain, so I adopt their tragic life end as my responsibility to get them justice on their behalf.
When I was less sick, I wasn't treated as badly. The more disabled I got, the more I irritated doctors that I didn't get better. Only recently have they too realized CBT/GET was based on a fabricated idea, they got even more hostile as there was literally nothing they could offer me. These more approachable 'modern day' doctors didn't set me up, they just vanished, because they know the situation is futile, depressing and hopeless. So the 'good guys' ignore you, and that's the best it gets - no health care monitoring, diagnosis, treatment = more disability.
That's why ME patients cope so well I feel. Universal Neglect = No way out, especially if you have slow onset ME and have
time to adapt, and in a way, adapting gets you used to losing your freedom. (Unlike sudden onset). So again, you say, well ,it could be worse, at least I can do X,Y,Z and when that's reduced to well at least I'm not in ER today on a drip, or not being wired up to an ECG with cardiac vasospasm feels like a good day, because you know it can be worse, even if a good day, is achieving nothing, speaking to no one, and being fed on a tray like a hospital patient having them take your urine away, by your elderly parents who in a few years will pass away from old age.
I think the mental health issues (if any) in ME will come for some, AFTER the 'Breaking News' medical treatment is offered and it's
successful, once you can get out the house, down the road, see other humans, talk to people, drive the car, walk the dog and think OMG have I missed out on this for 40 years and now I'm 60/70? Then I think people will flip, and the rage will come and effectively you'll look back and see you did a life sentence for a crime you never committed, and who put you there to begin with was criminal theorists, basically xenophobic, sexist, racist idea makers who first promoted in the 1990's (via the press) that ME was White Women Middle Class Over Thinkers, who get 'ME', the kind of nutjobs who blamed AIDS on Gays lifestyle and God was punishing them and not the heterosexual - the press infamously called AIDS, Gay Flu and kept running this insult. Yuppie Flu, came next for ME.
Then I think when you can't have it back, when you're wrinkled and using a walking stick (from old age not weakness), then it'll all come crashing down for all of us patients (50+) who got sick as teenagers and go left as spoiled goods down a cul-de-sac somewhere.
Currently, with no treatment,the more disabled you get, the more grateful you get for being alive. It's very bizarre
why this happens, it must be a process of denial, things could be a lot better? Because the second you think negatively, and recognize this, even fleetingly, then you feel upset and full of anger you can't have your freedom. So you learn not to think like this, and develop a defensive moat for your castle that is rarely breeched, no matter what happens to you.
I've found, with no way out, there is no point seeking help if all doors are closed firmly in your face. You adapt to being in a 'crash' (what moderate CFS have after over doing it) every second of your life what some patients called PEM, but in severe ME it's not exertion related anymore - you always have it. You adapt to going to the bathroom in your bed, not washing (to save energy) and sleeping in your socks and pants and not washing them either.
You adapt (because you never wash) of getting spots like a teenager in hard to reach places, but you can cheat and cut your hair off at least. But then you may struggle to do that eventually, due to developing cranial neuropathy (As in Lyme and MS). Even putting a drop of water on your skull, can feel like your head is burning as if someone slapped your with the palm of their hand, but this burns so greatly you're desperate to take
nerve pain killing drugs,but you cannot due to the vertigo and breathing weakness getting worse. I just pretend I have a hat on, or a helmet. A tight one, pretend I'm on a motorcycle. That's just how my skull feels. If it goes insane, then I do take the meds, and wish I hadn't and curse everything in my beastly life once the old eye balls are bobbing up and down.
Who do I tell? No doctor, because when you do, they pretend not to know, or say you're an enigma, or a mysterious case. What they really think, is you're a somatizer, and only people with a 'real' condition like MS would have your symptoms and as you don't have MS, then you can't have it. (Knowing this, what do you do, if you can't get out the house to find a new doctor?). You don't get any medical care, zero.
You simply adapt. I think it's human nature and
not unique to this disease. The fight for survival and the yearning
that one day, justice will be served against the people who did this to tens of people around the world, for personal gain. I bet it's also seen out of illness, such as in people who have to get through a war, or are falsely imprisoned.
That's what keeps patients going I feel. Hope, that one day, this will all end, and we will get treatment. If the patients get treatment, they have the energy to take legal action, with legal action comes closure, and with closure comes a washing away of the deadness that blighted your soul for so long. That chapter over, a new chapter starts. That's the fantasy, escaping the day you got the worse infection ever, stuck on repeat.
Until that day happens, we must not give in as unwanted garbage disposed humans society deems worthless. We must never give up, and must fight on, regardless of how awful we feel and how awful our quality of life is knowing how utterly alone we are.
All this drives me
forward and you guys too I'm sure.
We await the sunshine, and we await friendships and love - basic human right stolen from us by government sympathizers who sided with the deranged concept, CFS and ME is a
choice, and can be 'untaught' by CBT GET.
(Exactly the same idea used to be give to Gays, that people chose to be gay). That ignorance, eventually left us.
The same will happen to us, one-day, someone will say NO. You can't do this to these people, you MUST accept them, and treat them like we treat others.
Give it 10 years and we should be there that society accept us, 5 years for the first preliminary changes of patients trying different drugs perhaps in some sub-groups. A long time to wait, but it
will come.
ME as a choice of lifestyle, due to alleged 'stress' and mal-adapative coping strategies leading to de-conditioning is the most wicked, but impressively perfected lie told about a minority group since the last holocaust.
Knowing this gargantuan injustice, you have to live every part of your life you can, even if it's living in hell, it is at living and life is better than death no matter how hard the corrupt system whips you, eventually the ideological birch rod will snap and a healing rational based system of disease management will be granted in it's place All of this motivates me to see the day of
genuine evidence based treatment being funded and given to people desperate for treatment.