The Truth Behind The Invisibility of C.F.S.

Although... this is one of the most misinterpreted conditions of this era... sufferers should not be disregarded as just merely being lazy... as not only is this condition debilitating.. but we as sufferers have to put up with this disbelief of others.... don't people understand what we have to put up with on a daily basis!!!

Probably not!!!

We have to put up with the case scenario.. well depending on what level of severity.. but for now... I will use the concept of being 60% - 80% affected...

Most of us in this case scenario... have worked every day of our life's... and what for??? to be shunned by society as being lazy... and using this condition as an excuse to live on benefits... if we had wanted to live of benefits to start with... we would have done from from the start... after all... why go out there and work our backsides off... and pay our taxes... to subsidize those that would rather sit on there backsides all day... and do nothing!!! yes... you who you are!!! At the end of the day... we as C.F.S sufferers... should be looked upon as martyrs... after all we got ourselves into this state by working our backsides off... and what for? It is a fight now to get any financial help from the government... and even to the extent of claiming disability living allowance... most people are being turned down... for this benefit... due to the ignorance factor of the reality that C.F.S imposes on a sufferers life... but we need help!!!

Many of us are struggling to even get out of bed in the morning... some of us are bedridden, and having to rely on wheelchairs... to get out and about... at times... we are mentally and cognitively dysfunctional... point being is... that and this is a fact that there are people out there using the system... to the point that they are getting disability for conditions... that are not debilitating in any way... because they lie there ass off...

FACT...

Chap has arthritis... applies for disability living allowance on the grounds that he has arthritis... he claims that he walks with a stick... and the rest of the poor wee me jargon... he manages fine... got a high rate of mobility... and when he is out and about... leaves the stick at home...

Another chap was diagnosed with an over active thyroid after his eyes started to protrude... he has been given the highest level of disability living allowance... on care/mobility... and he is working... he is employed as a security guard and works every night... I have only one thing to say... after all... if his eyesight has diminished to the extent of only partial sight... well he will not make a very good security guard will he???

Point made!!!!

We have lost everything... our quality of life... our pride... most of us struggle to partake/keep a relationship with a partner... our family suffer... our independence is being questioned... yes, we need the help... but due to the controversy of the condition itself... we tend not to admit that help is needed... and struggle in silence!!!

I was looking through the usual websites... on C.F.S./M.E. lately... and came across this story...


I was very disturbed and saddened to learn of the death of and the circumstances Sophia Mirza, in which she died. Such a story is all too familiar to me and my own experience. I have for 20 years been a severe M.E. sufferer. For a whole two and a half years between 1989 and 1992 I was completely, totally and utterly bedridden. I could not do any weight bearing at all and was cared for at home by my mother, and was washed by District Nurses. Most expected me to die.

During that time I was taken captive by psychiatrists and taken to The xxxxxxxx Psychiatric Unit, xxxxxxxx Hospital, xxxxxx. For six months I was subjected to severe and terrible psychological abuses in what I term their `interrogation chambers'. I was subjected to a regime of the threat of physical torture, bullying, intimidation, scorn, derision, lies, deception, malice, and above all hatred. The stress and emotional torment induced in my mind was extreme beyond description. At the end of their `treatment' the psychiatrists claimed to have done wonders for me, and to have transformed me into a wonderful whole new person who'd progressed greatly in mental health and well-being. But the truth was that the psychological damage inflicted into my vulnerable mind was colossal, and has so far lasted the rest of my lifetime.

For the past 14 years I have been trying emotionally to recover and rebuild myself out of their efforts and achievements in destroying my mind and destroying me as a person, according to their ambitions. One of the greatest and most long lasting of the many adverse psychological effects was my "cursing",-my inability to prevent waves of `curses' rising up in my emotions from my subconscious, the very first moment of my waking from sleep each morning, and then on throughout the day. I have battled with this `cursing the psychiatrists' ever since then, as I battle the inward struggle to forgive them. (I am a believer in complete forgiving, but find it hard and not easy to do). Really, at least two of my abusers should have been jailed.

A few years ago while in a period of remission, I became involved with a well attended Pentecostal church. One in the congregation was a man who told me that his wife had been a severe M.E. sufferer, but that she had tragically committed suicide. I learned that he wasn't much of a believer in the physicality of the illness, and she had gone into a psychiatric unit in which both he and the staff had behaved coercively towards her. It wasn't hard to piece together what the rest of the story was. I thought to myself, "Uh no, not another sufferer murdered by them". (I call them the `psychiatric secret police', or the `psychiatric Gestapo', knowing for myself from all my personal inside experience of how they operate). I considered `stirring up a hornet's nest' in the fellowship by telling the elders and leaders of the church that I believed he'd taken part in the `murdering of his wife'. But due to my always fatiguing mentally, and needing to get home to rest after services, I never did start that row.

After I myself had been captive to psychiatrists, both my parents sided with them, and they dismissed and rejected whatever I tried to explain to them about myself. Their doing so detrimentally affected my relationships with both of them. For a number of reasons (but of which this has been a major part) I haven't been in contact with my mother for years, even at Christmas or birthdays. But my relationship with my Dad has survived, just about, at a struggle over the years. It just goes to show that psychiatrists don't just destroy individuals, but families too!

Currently I am acutely affected by M.E. I am completely housebound and live alone in extreme social isolation, being incapable of more than just a few minutes of conversation with anybody each day. I can stand just a little but can scarcely walk at all. Most of my existence takes place on my bed. I don't have Home care but my food shopping comes in from Tesco online.

I live with a constant fear that `they', the psychiatrists, may one day come for me again - that they may come and break down my door and "Section" me and take me. (In other words, an `arrest'). I know that they would do anything to gain power over me a second time. And then I too would be forced to my death. The inducement of relapse and physical symptoms which would occur in me would be beyond what I believe I would be capable of surviving. For this reason I always have a supply of sedative medication tablets, a `stash' hidden in my bedroom drawer, which if they came for me I would grab quickly and hide in my socks or underwear to `smuggle' with me into the psychiatric unit. And then I would look for an opportunity to end my life by suicide. I do so hope that my life will not ever end in such a way, and yet, I am constantly aware that it is a very real possibility that it may at any time in the future come to pass, that I will be forced to my death, another hidden murder statistic.

Perhaps it is time for us to stop politely calling such deaths `tragic accidents' or `awful misunderstandings', and call them what they really are - murders!

Please feel free to use this letter in whatever way(s) that you wish. I am perfectly happy for it to be quoted, printed, reproduced or circulated in whatever way.

Kindest Regards,

Jonathan


It makes you think... doesn't it... but to be honest... society itself is to blame for what happened to Jonathan...

Isn't it about time... that society and our supposed health care providers... got up of there backside and help for a change instead of being judgmental and forcing sufferers... to hide from society... to be honest... I feel that we are basically being treated as lepers... and due to lack of funds... to send us to an island... away from society... we are being stripped of self confidence... and imprisoning ourselves within our own jail... our home!!!!! but hey... I will let you into a little secret... a fellow suffer had to reassured a fellow work mate a while ago... after being questioned... and being treated like an idiot... she assured this girl... that she would not get M.E as lazy people didn't get it!!!! sorted!!!!!! good for her....

I am myself... have come up with the concept of disbelief... so many times... but do you know what pisses me off?? when I try to explain to others... I get too tired... between the factor of the thought process and the explanation itself... so, instead... I just tend to let others think what they like... bugger them....

My biggest concern to be honest... is the N.H.S... I have no confidence in them at all... and to be honest... they are the worst offenders in the factor of ignorance... after all are they not supposed to equipped with people skills???? not to my knowledge... well unless the condition itself... is recognised... and they can look it up in there medical books...

Nearly two years ago... I struggled to get out of bed... I felt quite ill al day, I was shivering with the cold... my legs ached... headache... and then all of a sudden... I was being subjected to shaking episodes... I made an emergency appointment with the doctor... don't even ask me how I got there... fear I think... as I thought that there was something seriously wrong... but when I got there my speech... was affected... and the doctor could not hear me... he treated me like an idiot... and all he could do... was to tell me to speak up... I was dismissed... in my complaints... so I walked out the room and got home... as the day progressed... I got worse... I took myself upstairs for a bath... bad idea... as I struggled to get out... and when I did... I got stuck at the top of the stair.. I was shaking too badly to get back down... my balance had completely gone... I was scared... thankfully I had my mobile phone upstairs with me... so I called for help... my friend called the doctor... when he arrived... I was shaking violently... and my speech was gone... he took my hand... and held it... and then told me never to phone them ever again... for an emergency appointment.... and walked out of my house... I was so upset... scared and confused...

All I could think... again and again... was why???

The next morning... after talking to my mum... I was going to phone the health board... and report Dr Watts... for misconduct... but I didn't... now I wish that I had... because... to be honest... even now, I blame that situation for causing me so much anxiety... that I can no longer stay upstairs for a prolonged period of time... and as a result... my personal hygiene is at times questionable... as my bath is upstairs... and this leads to another scenario of disbelief... as I am fighting to get a shower installed... and the occupational therapist... from social work... is questioning my health factor... with disbelief... she announced the fact that if a shower was to be installed... then it would only mask the problem of anxiety attacks... as she puts it... maybe so... but what happens when I can't get upstairs... to have an anxiety attack... I still need washed... she announced that she would let herself out after the visit.... what was the point in coming???

Psychiatrists.... their role in M.E./C.F.S. is management of the illness itself... but if they truly understood why would they hand out leaflets... knowing fine well... that those affected have problems... in reading literature... and conserving information... maybe they should see a psychiatrist who suffers from M.E... and realisation will set in... at the end of the day... what psychiatrist... asks a sufferer... how long have they had M.E./C.F.S. and then after the question has been answered... comments on the factor of... why haven't you learned to deal with it by now!!!! I was gob smacked.... she took no heed of anything I had to say... until one time... I woke one morning... and for some bizarre reason... I was hyperactive... I could not stop... I cleaned the house from top to bottom... my carer was in that day.. and she told me to sit down... but I couldn't I mentioned this to my psychologist... Dr Ranni Sinnack... and she asked me... if I was taking any illegal substances..... no worries... we have mutually agreed that I be discharged from her care... and she has the insight that her graded exercise program has worked.... whatever!!!

The truth behind the invisibility of C.F.S is that we are still being subjected to a life in a "glass cage" we are on display... for emotional torment... in whatever capacity... through negligence from our healthcare providers... and being shunned from society... through ignorance... after all... it was the ignorance of others... that originally portrayed this illness as "yuppie flu" whereas the high flyers couldn't be bothered going to work....

Yipp mud sticks!!! and due to that.... to date we are being labeled... as just being depressed....

I have lost everything... my hopes... my future and my dreams... and they have been replaced by an existence... of exhaustion... confusion... lack of concentration... constant pain... agitation... shaking episodes... blackouts... social isolation... debt, due to not being fit to work... inability to carry out even the slightest activity without suffering the aftermath...

I suppose... it is my fault entirely... silly me... I should have just admitted the fact... that I am just depressed... and took the anti-depressants that have been offered to me on many an occasion....

But then again... would that not just be a classic case of masking the situation???

No way... I will fight it to the bitter end... I am not a statistic...

I AM A PERSON....


MIST

within the horizon
there is a mist...
which slowly condescends
on the beauty of the horizon...
this itself creates a mask
and subsequently
hides the beauty of the sunset

the concept of M.E. is
pretty much the same..
this within masques the
concept of reality

but unlike the mist
that masks the horizon
it may take a while
longer to lift

but never give up hope
as in the beauty of the
horizon..
the concept of reality
will shine through
once again....