ME WITH M.E

Chronic Fatigue Syndrome

2009-01-24T16:07:00.000Z

M.E. / Chronic Fatigue Syndrome

2009-01-24T16:02:00.000Z

What is Depression?

2009-01-24T15:06:00.002Z

What is Depression?

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Still going

2008-09-30T07:33:00.003+01:00

Its been a while now, i got bored of posting to a blog no one bothers with,but hey who cares its more for my own self esteem if i got any left.
There are times when this illness gets me down, like now, I'm still at work and i hate it every day i struggle more and more to do a normal job, i find it harder to get up in the mornings lately.

I went back on the dreaded amytriptoline a couple of months back, sad thing is it helps me sleep a bit better but also makes me feel like crap. But it does help I'm slightly less agitated than usual but the aches and pains are still bad, every day its like every muscle has been badly bruised.
That i can cope with the depressed paranoid shit that i cant deal with and i get very little help from the doctors. That's the reason for this blog was to find others talk it through etc. but it doesn't seem to work really. we will see but i may end this blog soon.

Esther Rantzen

2008-06-11T07:41:00.001+01:00

Esther Rantzen has long been a campaigner and advocate for the "underdog". From her early days in radio to her rise in the world of television, she has never been afraid to question authority.

She has always shown great empathy when tackling sensitive issues such as organ donation, stillbirth, drug abuse and more recently, her very important and public campaign on child abuse. This led to the setting up of ChildLine which has been instrumental in helping thousands of children and has been used as a model for similar organizations in other countries.

Back again

2008-06-11T07:23:00.003+01:00

Hi all its been a while since i posted on here. Two reasons one i thought id give it chance to settle. see what reactions i got.
Two Ive not felt so good and iv had to struggle with work.

I am the big 40 this coming Saturday ( yip he ) suppose I'm going through a mid life as well because i have felt quit low. I thought about growing my hair, buying a motor bike etc . lol .

Health wise i still have not decided on taking these new pills the doctor wants me to have, there called Duloxetine. trouble is as i said in my other post ...Doctors drugs...
I am very paranoid to try new pills, especially when you read articles like this one.

Duloxetine (brand names Cymbalta, Yentreve) is a serotonin-norepinephrine reuptake inhibitor (SNRI) used for major depressive disorder (MDD), generalized anxiety disorder (GAD), pain related to diabetic neuropathy and in some countries for stress urinary incontinence (SUI). It is manufactured and marketed by Eli Lilly. Large number of side effects occurring during duloxetine treatment and lack of clear advantage over existing medications prompted critical reviews concluding that duloxetine "should not be used" for stress urinary incontinence^[1] and "currently has no place in the treatment of depression or diabetic neuropathy" as well
READ MORE...
It kind of puts you off.
The biggest thing i have found lately is my concentration levels have gone, I'm not sleeping well ether.
I have terrible pain in my wrist joins what that is i don't know. But after my experience with doctors what do i do.

GUILTY

2008-05-24T07:43:00.002+01:00

So i woke up yesterday morning, had to drag myself from my bed as i stood up the pains were worse
than normal. My legs felt like jelly my back could of snapped & my wrists are so sore it feels like the bone wants to push out from the inside, like a bad sprain but amplified.
I felt dizzy (not good) as the past tells me to much its one of them days, the kind you wish you were dead.
So i headed to the bathroom had my morning scrub. Then from no where as i stood up from cleaning my teeth
my head became foggy almost like the devil had taken over me.That sudden adrenaline rush making me angry.
That was is it another fked up day.
So i go down stares with good intentions the kids are playing the wife's making breakfast & everything is normal
except inside me.
Ever sound the kids made the kettle made the radio was like a ten ton train racing through my mind, on top of the biggest thunder cloud going, With this i couldn't hold back i stood up said fk breakfast I'm going to work.
I stormed out in a rage a rage i just don't understand, possibly its caused by me overdoing things. after all i had had a couple of good days up until this. So what did i do, i tried to be normal and done to much i had a late night Wednesday & a work out because i felt good i went overboard.
I was in a bubble my Head was caving in all because i don't know how to cope with this. i push myself to far & i no longer care for me. Its how this affects my family. They say they understand but do they, even so why should they suffer too.
I m riddled with guilt cause of this but i cant cure it please tell me I'm not alone. i need hope.

ABOUT ME

2008-05-23T10:37:00.000+01:00

Hi my name is Scott I am nearly 40 yrs old & i suffer from M.E.
I am married to a beautiful woman who without her i would have given up, I had nothing but a pair of crutches when we met, I think she deserves better than me, how she copes I don't know.
I can be difficult at times. I don't understand my illness so I cant expect her to.
I have suffered from M.E for the past 12yrs "officially" but it probably started way back when I was younger. (Living with it is hell)
I was on the sick for about 6yrs in the beginning i could not walk without support, But I started to slowly work out lifting small weights, this did help, I was determined to get stronger at least, even though for every 20 Min's of weight lifting i had 5 hours bloody sleep. Doctors never wanted me to work again & to be honest I struggle to hold down a job as basically I am unemployable.
But having said that I have 5 kids from two marriages. ages from 3 to 22. I love my kids & I really wanted to have a job so when asked what dad does for a living they had something to say.
I grew up with both my parents being ill & unable to work, my mother had bad thyroid trouble & my father went totally blind for some unexplained reason & also caught meningitis which left him crippled for life. Also my brother who is three years younger than me is half paraplegic from a motor bike accident he had when he was 17. So as ill as I am both mentally & physically I try to be normal for there sakes as much as mine.
This resulted in going against docs orders & struggling & I mean struggling to work. So I decided to start my own PC business, repairing PCs & selling accessories, "Dumb me i thought i could work at my own pace" it was hard but I struggled on for about 5yrs. If I felt really rough id take a day off, only thing being I took to many & the business failed leaving me in rather a large amount of debt.
I now struggle with my new job, but I am kind of Lucky my boss is great he kind of understands, I repair garden machinery & I work at my own pace the boss seams happy, & I am kind of, "its just bloody hard" my hours are only 830am to 5pm with 1 hour for lunch thank god cause by lunch I have to sit & get rid of the aches & pains then mentally prep my self for the last 3 hours, that's really hard.
So buy the time I finish work I have to sit in my car for a few Min's to gain some strength to drive home, I find that I get quiet dizzy by the end of the day almost as if I have not eaten for days you know that sick queasy passing out drained feel.
Once I'm home I have my tea & sit with the kids for a bit, maybe shove some pain killers down my neck cause I hurt so much.
For years i was on amytryiptoline an anti depressant which did give me some energy & I was more relaxed but it had a lot of side affects I did not like it I couldn't cope with the paranoia it caused.
If I feel like it I will struggle to have a work out with my small weight selection. Docs say its good to keep me stimulated but lately I just cant do it I find I feel really drained & depressed to the point of suicidal thoughts in the mornings. not good! but then I am struggling again at the mo. Buy the end of my working week I crash, so weekends can be good they can be bad. Its my family I feel for.
So that's me, for now I'm working but don't know how long I can cope I feel like shit but I must try even if it kills me & its probably gonna. In my other posts over time helpfully it will be come clear to me & my readers whats happening to me because I feel like I'm a fast car doing 1000 mph into a wall that I ain't hit yet. I'm running on false power, how long do I kid my self. what to do is my big question?

About Me ~ Jane

2008-05-22T04:15:00.000+01:00

Hi, I'm Jane, I'm a 35 year old mother of two from Australia and I've had CFS for twenty years this year.

I was 15 and on a school camp when everyone came down with a mysterious 'bug'. ~Not every school trip includes barf bags, but ours did.

After 2 weeks off school, I returned, but found it hard to keep up. I would come home from school and sleep on the lounge. My school work suffered and I received the worst marks I had ever seen in the end~of~year exams, our School Certificate.

My mother took me to several doctors (more on them another time), but it took over a year to find a GP who believed that I was ill but was unable to work out what. He referred me to a diagnostician who re~ran many, many tests.

Finally, a repeat test for Glandular Fever (Mono, Epstein~Barr) came back positive and I was diagnosed with CFS. That was what the mystery virus had been a year before!

It was such a relief to have a name for my illness, that it took a while to sink in that there was (literally) no treatment available at that time. My situation really hadn't changed much.

I struggled through another year of school before I realised that it wasn't achieving anything. I was harming myself more.

Over the past 18 years I've been through a lot of ups and downs. Spent money on all sorts of 'treatments'.

Now, my life is not what most would call 'normal', but it's getting there. I have good days and bad, like everyone on this planet.

I also am extremely lucky to have a loving, understanding, supportive husband of 9yrs, two beautiful children, and life is good.

I'm looking forward to helping others by sharing my own experiences and knowledge here, along with Scott, Kelleigh and many other wonderful people.

Jane also writes her own craft blog ~ Kidzarama ~ filled with humour and fun projects.

Doctors drugs

2008-05-21T07:38:00.003+01:00

Over the years i have tried several drugs to combat my illnesses and quiet frankly i have had a gut full.
from the age 18 when i tried to kill myself and ended up having a breakdown .spending some time in hospital. they put me on largactil, i mean that would be unheard of now.
Ive also had nardil, prozac, loads of pain killers, temazepam, and diazepam.
The only real one that worked for me was amitriptyline but that was only in capsual form, they stooped doing it and changed to pills which upset my guts caused headaches made me real groggy and paranoid.

So for the past 4yrs Ive took nothing but pain killers co proxamol and now they have banned them in the uk.
Oh i forgot a few years back i tried a drug called lustral this sent me round the bend i had funny ears i was dizzy ended up passing out on side of the rd,woke up in hospital.
My point being i am very paranoid of all drugs now to the point I'm scared to try them even thought they might make me feel better,trouble is i read the side affects and that's it i shan't take em, god I'm ill as it is let a lown be messed up with more pills.
So i went to the docs recently and as usual you could see the look on his face "oh its him again"
I should of just said give me pills and ill f off. cause that's how most doc s make me feel, they try to get rid of you cause they don't understand M.E try living with it.
So he wanted me to take a new one called duloxetine, its an ssri. I declined as Ive said I'm in a mental block where i see all drugs as bad I'm to paranoid to take em.Yet i long to feel better you know i have good days where i don't feel so bad and liefs great I'm happy with the wife and kids we all have fun i love to laugh , play and i have a lot of love. But when I'm in a bad way I'm almost like a monster i shout I'm grumpy I'm in pain, So where do i turn I'm confused. I just want to feel better ill never be 100% because of me, But there must be something.

Love and hate

2008-05-21T06:56:00.003+01:00

I love the sun as it shines upon my face
glowing like an angel warming my hart

I hate the rain that soaks me through
chilling the darkest parts of my soul

I love the sounds of the sea
that drown my head from the doom within

I hate the thunder that clouds over me
forbidding an angel from warming my hart

For my father

2008-05-20T18:31:00.004+01:00

This poem is dedicated to my dad, Although there was never a lot of love between us i know what he went through must of been hard.At 30yrs old he went blind & caught meningitis when I was just 13 & my brother was only 10. Hes a hard man and has struggled through, to this day he still suffers. As his son i cant help admiring him for that.
I wrote this poem through his eyes.

MY FATHER

Cold is the night that creeps on me
Through broken eyes i can not see

Tiny little voices are all i hear
As the memory of faces just disappear

Thirty years young life taken from me
Its so hard to see how it used to be

My babies have grown into big strong men
I would give my soul just to see them again

No one knows the darkness I'm behind
Lost with no views now that i am blind

Trust

2008-05-20T18:03:00.001+01:00

Trust in me is what you said
but you keep on messing with my head
Never asked to be born i wish i was dead
Trust in me is what you said

Anxiety: The True “Disorder”

2008-05-20T17:46:00.001+01:00

by KC Kelly, Ph.D., LMHC

http://DOCintheBiz.com

“Anxiety: The True “Disorder”. Never a pessimist, always an optimist, I hope that there will one day be a cure to eliminate anxiety disorders. We will always deal with the everyday anxieties of life, but when we talk about having an anxiety disorder, we are talking about a whole other ball of wax.

Until the day comes, however, when a cure is found, there will be many people who suffer on a daily basis with the terrifying symptoms of a disorder which holds little evidence of a forthcoming “cure.” I will always hope and contribute (as a clinician) to finding a cure, but for now, we must learn that there is treatment to help those with this disorder.

With the combination of medication paired with therapy, nutrition and exercise, we can help to minimize and cope with the physical and mental symptoms that plague a person who lives with an anxiety disorder.

There is a real difference between normal everyday anxiety and when anxiety is brought upon by a true chemical imbalance. Mind over matter can help to minimize symptoms of an attack, but it’s important to realize that once the neurotransmitters in the brain are released, misfired or have not fired at all (which causes the “attacks”), that the effects are out of our control and in the hands of our faith and our ability to cope with symptoms until they go away.

I wish it were as easy as talking oneself out of an anxiety or panic attack, for instance, but we do realize these are real disorders with real repercussions and loss of quality of life.

With the help of medication (for true disorders) AND therapy paired together (including faith or anything that helps), we can TREAT the symptoms of the anxiety disorder and live a happy and fulfilled life.

Living with an anxiety disorder is no picnic, but again the good news is that there are ways to help decrease the fears and minimize the fight!

Please visit us at http://DOCintheBiz.com for our mental health self help links and the opportunity to email Dr. KC for professional and confidential help with any concerns you may have regarding anxiety or any other issues you may be facing! We are here. You are never alone!

Primary Symptoms of CFS

2008-05-19T20:11:00.002+01:00

As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it's not the kind of fatigue we experience after a particularly busy day or week, after a sleepless night or after a single stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that may be worsened by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.

People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational (work-related), personal, social or educational activities.

The fatigue of CFS is accompanied by characteristic symptoms lasting at least six months. These symptoms include:

difficulties with memory and concentration
problems with sleep
persistent muscle pain
joint pain (without redness or swelling)
headaches
tender lymph nodes
increased malaise (fatigue and sickness) following exertion
sore throat

One of the keys to CFS-ME - "Pacing Yourself"

2008-05-18T15:32:00.005+01:00

Before I got sick with the fevers, pain in the neck and delirium that laid me up for three months, I was a completely normal and very active mother of three. I loved to run a six mile course. I took the kids to a local three mile walking trail where we would walk, run, skate or bike.
The rest of the time I love to work in my garden, both vegetables and flowers…it was beautiful! Indoors I had my own quilting business, crocheted, cross stitched, cooked , and took care of two dogs and a cat.

All of that was before CFS-ME. Things have changed. Running is an impossibility, I only see that walking trail or park when we drive by it. The skates and bike sit in the basement gathering dust. Weeds and stubble have encroached and taken over the garden, and the flower beds are bare. My quilting projects are in the closet with the other crafts. And my dogs have to wait until my husband to come home to get to have some playtime outside.

I'm sure by now you have noticed the contrast. Besides all that is the terrible fatigue which sometimes makes me loose a whole string of days in a week. But worst of all is feeling like my life is slipping by without being able to spend the quality time I used to with my loved ones.

Trying to adjust to all the changes has been, and still is, a difficult process. A lot of the battle is acceptance and pacing. I have to keep accepting the fact that I have a debilitating disease, which in itself isn't easy. And secondly I have to pace how I spend my limited energy.

As any other woman, I used to love going to the Mall, now the thought of that fills me with dread. One thing I refuse to give up is Barnes and Nobles. (and no, ordering online is just not the same!) You see, it's an hour just to get there from where we live, and then we like to spend a lot of time there since we can't go all the time. You know, perusing books, checking out the music dept., drinking fancy coffee etc. ,

But for me the ticker is running…tick..tick..tick.. You only have so much time, so much strength. I use a wheelchair to conserve as much energy as I can. But I know the inevitable with happen. First I move very slowly. I can't think clearly, or form sentences correctly in communicating with my husband. I now have entered what I call "The Fog". I become slightly dizzy, especially when turning my head quickly. The surrounding area becomes to much, overwhelming, for me to take in visually and so I try to keep my head down or focus on singular things. I feel anxiety mounting, become more irritable and I now the last tick has sounded…..time to go home. I lay down in the car, practically passed out, and it takes me three days to recover. But….I do come home with a great stack of new books and a couple CD's!!

What we have to do now is plan these days. We know in advance that the above is exactly how the day will transpire. So I rest for two days before, and I mean rest. Doing things in bed and sleeping as much as I can. The day of the trip I sleep in and my husband brings me a nice breakfast, (by the way he does everything around the house now anyway, thank goodness the children are grown) Then we are on our way. Wheel chair in the trunk, wheel chair out of the trunk…God bless my husband!

My husband is very loving and extremely protective of me, he's watched me go through so much he feels determined to make things as easy for me as possible. But many times he'll say…"Are you sure you should do that? You now how you will be afterward." and my response is always "Yes, I know. But I can't stop living."

And so pacing is the key. Today my husband will help me to plant bright purple impatients, pink petunias, and red flames. Yes, I will get tired, yes I will have to recover for a time.
But today……there will be flowers in the flower bed.

Leeanne

Please visit Leeannes blog....COVERED WITH LOVE

BROKEN HEART

2008-05-17T10:24:00.005+01:00

A whisper in the dark a voice from within the shadows of my cold empty space
Calling me calling me,
come my love come.

Thoughts of no hope surround me like a mist swallowing the hollow shadows
That were once me.
Angels voices beckon me to enter the place I long left behind entwining my
Heart in stone.

In the depth of despair the last breath of my inner love a voice calls
Calling me calling me
come my love come.

Scott

Who am i

2008-05-15T19:24:00.004+01:00

As the tittle says "who I am" this i often wonder.
Lucky me i live a lavish life of aches pains flu like symptoms and one f....d up mind.
All this because I'm gifted with the torment of M.E.
What is me
Myalgic Encephalopathy or "ME"
Chronic Fatigue Syndrome or "CFS"
Post-Viral Fatigue Syndrome or "PVFS"
Chronic Fatigue Immune Dysfunction Syndrome or "CFIDS"
M.E. (myalgic encephalomyelitis) is a chronic illness that affects many body systems and their functions. The formal term used currently by the medical profession is Chronic Fatigue Syndrome (CFS). The changes seem particularly to affect the nervous system and immune system, but they also affect other body systems. The illness can cause profound exhaustion, muscle pain, problems with mental function such as memory loss and poor concentration, malaise and other symptoms.
Now i could go on here but I'm not going to, you will get the picture as time goes by.
this is just a small rundown of it i will be posting my life story in several parts and hopefully others will post there stories too.
I never asked to be born, i never asked to suffer this pain. I'm not the only one who suffers my wife and kids suffer with me to witch i feel such heavy guilt. i owe them everything but feel sometimes i can give nothing.