My Inward Fears...

To date, my Room 101 has become one of hidden pain, hurt, misconceptions... and that of the negativity and disbelief that surrounds many others, including myself... that have through no fault of there own contracted an "Invisible Illness" such as that of C.F.S./M.E.....

As in the invisibility behind the illness itself... well to be honest, we as sufferers, may as well be.... as not only is our illness rejected, we are labeled, to add salt to the wounds, as being either lazy or depressed.

To date, whereas, no other cause can be found, we as sufferers are being given a diagnose of exclusion... as in C.F.S./M.E..... then being either... labeled as being mere depressives from the Primary Trust sector.... or being labeled as being lazy from society itself.....

This is one sufferers story..... amongst the many thousand that want to be heard.....

Sleepyhead from our support forum...

Since my diagnosis, I've gone through such a range of emotions it's sometimes hard to pinpoint exactly what, or how it is I am feeling on any given day.

Some days, I may look fine and dandy, appear jovial and on top of things, but if you take the time to look properly, or know me well enough, you'll know that it's just a front, it's like I put on a mask of what people want to see, something that hides how I'm really feeling, incase they don't like what they see and turn away from me. I guess this stems from my fear from childhood of being alone, of not having someone there who cares for me.

There is so much baggage that comes with this illness, frustrations at the number of pills we must take to function "normally" then more pills to counteract the previous lot's side effects...... My current RANT ALERT tablet is frusemide.......why, oh why? Climbing the stairs is hard enough normally, but when I have to pee every 20 minutes it's nothing but bloody torture! Other such baggage that we all have to deal with at some time or another is the loss of our independence, our dignity, our confidence, and the feeling that although we have friends who also suffer from C.F.S./M.E., seeing as every case is unique, no-one completely understands you sometimes.

I'm terrible...... I thought I could cope with my life the way it is, but being alone through the week seems to be getting harder rather than easier with each week that passes. Maybe it's because I don't have many friends here anymore (I can count them on three fingers of one hand) or that I have no contact with my "family" (my choice.....they were causing me more harm than good, and as a self harmer, I was able to make the connection and then break all contact). This is essential for my survival, but at the same time, you have no idea how difficult it is when my Mother walks past me in the street, when she won't take my phone calls nor answer my texts or emails...... so I decided enough was enough and to stop making the effort to contact her. My condition has left me feeling almost totally isolated; I'm not able to plan things in advance because I don't know how I'm going to be any given day, I can't commit to things as "normal" people do anymore, because I'm fed up of being seen as "the girl who never shows up". Going to bed alone every night is hard, until my sleeping tablets kick in, I'm lying there worrying about every noise I hear, wondering if I've remembered to switch things off, if I've locked the doors, set the alarm. I'm sure some of you must know how it is, the panic and anxiety creep in, and I've found that I now have a checklist at night, and that I MUST work my way down the list three times before I'm satisfied that everything is in order and I can go to bed.

I'm sick to the back teeth of struggling financially too, I wish that I was able to get and hold down a full time, office based job, that I could be in a position to utilise the brain that I have (according to my degree and all the certificates in our study), that I would be able to contribute more financially to our home. Thanks to people's misconceptions, prejudices and ignorance that just isn't possible. I only got the job I'm in just now because they were desperate and I didn't tell them about having M.E. until after my probationary period was over.

I'm fed up of never being able to remember the word for something, or feeling like the word I'm looking for is on the tip of my tongue, but I just can't get it out.... That happened the other day when I was talking to an electrician.....I couldn't get the word "Immerser" out and was describing it as "the boost button for the hot water tank"; I think the poor chap must've thought I was insane!

Aside from all of the above, I have pretty normal fears..... spiders (well obviously, I'm a girl!), clowns (ever since I watched It), daleks (although I'm trying hard to get over this seeing as I love Dr Who) and very, VERY oddly, polystyrene...... its the noise, feel and smell of it..... it makes the hairs on the back of my neck sit up.....eurgh *shivers*

I wish there was a way to make people realise, that just because I don't use my walking stick every day, doesn't mean there's nothing wrong with me.....It means that I haven't yet fully accepted my condition, nor given in to it. I'm sorely tempted to show people the Tupperware container full of medication that I have to carry with me at all times, just to show that if you shook me, I'd probably rattle. I'm fed up of being judged, it's just not fair.

 

As sufferers.... we seem to dwell within our own world of deceit.... as we are well.... and tend to suffer in silence.. as to be fair.... and I will quote from Sleepyheads story.... "I'm fed up of being judged, it's just not fair."

Why should we as sufferers be judged???

What are our convictions????

I hear whispers of laziness... and we just can't be bothered to work....

How dare you!!!!

It is a well known fact that lazy people do not, and never will contract C.F.S./M.E. and many sufferers to date have had to leave high profile jobs due to ill health.... suffer financially... and have been let down by the N.H.S and there Primary Trust Sector.....

To date my room 101 is acceptance.... as when acceptance is apparent.... judgment will follow....

No one has the right to judge another...

As to date... we all have our room 101's.... most of us will never enter, some, come close to the entrance... and a few will face there fears...

But this I ask, if you were to face up to your utmost fears, and were still to be judged, would you dare enter the room???

Me thinks not...

Ahead I see a flickering light.... which portrays an exit symbol.... which I have leered to in the past... not as such taken that route.... although it is inviting....

I have realised that this is not only, just an invitation only exit, as it with in itself displays terms and conditions... as to the why's and where's and how's I first contracted this so called "Invisible Illness" and the small print within the invitation.... states that I and many other sufferers that dare to enter there Room 101 of acceptance, will be subjected to public denial..... and healthcare misdiagnose... as in being depressed...

To date, my determination will suffice... and as a sufferer I will never go towards the flickering light..... I will win this battle... and so will all C.F.S./M.E. sufferers....

To date, yes, after thinking... our Room 101 is not one that will create fears.... its others acceptance that we are "Real people suffering form a Real Illness"... and yes, you are temporarily excused for misbelieving us....

I only ask this... please go towards the flickering light.... enter and accept that your inward fears of labeling others has been unjustified as a level of understanding has now became apparent..... and therefore no further questions will be asked..

Please help us as sufferers, to help ourselves, as once belief sets in... we has sufferers do not have to try and continue in a disruptive route of trying to be normal... as society portrays as the norm...

The so called "Terminology" of the "Norm".... is retrospect... of one's pre-expectancies.... as sufferers, we should always deter the actions from others... as in ignorance and labeling.... but what troubles me the the mere factor that we as sufferers have been pushed "underground" so to speak... as in online forums, websites etc... that factor is not acceptable.. as within society itself... everything in varied areas are always geared towards the community.... but as sufferers we have been forced to build our own community and support network....

 

This is my story...

Yes, I have normal fears like everyone else.... I have a "death phobia" to the extent that I can't eat, wear nor touch any animal that has died nor has been slaughtered for food or clothing....

This fear also consists of loved one's that have died... as I can't although I really want to give them a final hug... and having to ban friends from my house temporarily as I knew that they have touched a dead person....

I am scared of Daleks... heights, and at times the unknown... but these are things that like everyone else who has a fear of something can avoid....

What can't be avoided nor changed is the fact that I, through no fault of my own have contracted an "Invisible Illness" but in saying that, if only others would change the way they think and try to understand what we as sufferers go through on a day to day basis...

I am not lazy... nor depressed, but my downfall is trying to be consistent... I try to keep my head above water by going from one job to another... but always failing, but I always have a plan b up my sleeve.... my determination should be applauded... as not only do I struggle, I put up a good act in front of employers... friends etc.... but yet, within my own 4 walls I am struggling...

I will never give in to this... quite the opposite in fact... as not only do I still try to maintain a job... I have set up this website and forum to help fellow sufferers.... but if the truth were to be told, I only live an existence.... not a life... as I have lost the purpose of well being and will continually seek sanctuary in every outlet of the so called normality that I can...

The outlets that I speak of have suffocated the ill me, as I have no time to think about being ill.. but then again, even at home I shut out reality also... I just don't want to be there, as it is a reminder of how ill I am....

I am peeved of with the comments of "You Look Tired" if that were the case then I would sleep... but when I look "Tired" I am ill... struggling to deal with "Invisible Symptoms" which there is no point in trying to explain....

I have placed myself on a pedestal of success... and to be fair, this is what created my illness.. as I put my body under so much strain that it gave up... it needed to rest but I ignored it.. now, it is trying to pay me back for asking to much from it... but still I try... apart from when it "Shuts Down" entirely....

Within my head, I am a highly motivated, intelligent individual.... but my body refuses to be compliant....

I worked for Tesco for 7 years till 2005... then took very ill... was pensioned of due to ill health in June 2007 got 6 weeks monies, in lieu of notice (which I did not have to work) and the money was due to run out in August and by August 28th had secured another route of employment in a call center.... but by December... I was to ill to continue... but after speaking to H.R they made adjustments for me to help me to continue to work.... but was off work due to ill health more than I was there....

I resigned from that job in August 2008, as I had found a new job.... working in a card shop...

At the interview... I sold myself 3 times over... to the extent that the initial 16 hour a week vacancy that I had applied for turned out to be a position for a trainee manageress.... and for several months I carried the position through... at my own loss... as my illness is having a field day with my health but still I always had an excuse to why I looked dreadful at work... i.e.: I had my friends round last night and had a drink... or I just didn't sleep to well... etc... but still I try.... and I refuse to give up.... even if there are complications.... as determination is my biggest ego booster.... and without that... I will be a voice in a corner... whispering please help me... but if the truth be told no one will hear nor understand my cries of help.... as I am deemed as being "Invisible" or even transparent.... as if I even mention the fact that I do not feel to great.... people tend to look right through me.... and carry on with there daily rituals regardless....

 

As in the reality of my real fears... I will enter my Room 101 and face them... as in the disbelief, ignorance etc... from others, I suggest that they enter there Room 101 and face the fact that we are Real People Suffering From A Real Illness.... and perhaps then, they will learn the concept of compassion.... after all... does my story or Sleepyheads story portray that of just being tired or lazy..... me thinks not....

I work to get money.... get ill whilst working.... have a drink to try and feel better, whilst in my spare time.... I concentrate on the needs of other sufferers as in the forum and main website to not only to build a community... but also to provide a "Safe Haven" whereas other sufferers can relate to the sufferings of others, provide help, friendship and practical advice for fellow sufferers..... and I also have a family to take care of....

Question... What do you do when you are ill?????

Answer... take a day or three of work... until you feel better.... then return....

Me thinks that it is you that is lazy... not myself nor other C.F.S./M.E. sufferers.... as we try to work regardless... bearing in mind we are not only ill for a few days... try being ill for a few years..... battling to keep your job... and trying to look after your family....

How would you cope????

I just hope and pray that you will never be subjected to the existence which we as sufferers have been forced into... through no fault of our own....

But a note on the positive side.... you will cope eventually.... we have had to!!!!

And you will too!!!!!!