Welcome to my blog here i will share with you my thoughts,feelings,information about ME/CFS and also Fibromyalgia hopefully will be of some help to you eventually can use this as a forum once it is established.Basically you will encounter the problems ive hit by having this illness,the hurdles i have overcome ,and my life adapted to living with this illness.I will post information about the illness helpful links and any questions you may feel will be useful.Thanks for taking time out to pop by please leave a message.

Wednesday, 29 April 2009

There are so many descriptions of this disease from patient to patient.These effect each individual differently.Here i explain my symptoms;

Easily Confused.
Brain fog...forgetfulness.
Attention Deficit.
Muscle Weakness.
Loss of balance ....Leading to falls.
Hypersenseitivity Light & Sound.
Shooting Pains.
Recacurrent sore Throat.
Hypersensitivities ...(Such as increased allergies to Medications)
Frequent Waking.
Limb Moving Disorder (Jerking/Twitching during sleep)
Generalized muscle pain
IBS ..(irritable bowel syndrome)
Problems with Blood Pressure.
Functions in Controlling Body Temperature .. Fluctuates between Hot & Cold.
Worsening of Symptoms Under Increased Stress.
Loss Appetite.
There are so many symptoms these are just a few i have mentioned above. I have had the pleasure of experiencing,can't stress that each individual suffering from ME will experience the same ,less or more than i have .
What i have to stress that "Normal "healthy People take for granted in life such everyday tasks as taking rubbish out doing the dishes.This to me is like walking mount eversest!sounds silly doesnt it ,well it would if you dont suffer this illness ,but me i feel an overwhelming feeling to lie down and rest basically your knackered!
I can only describe it like having proper flu permanently.Flu like symptoms ,following minimal physical or mental exertion.
Exhaustion never goes away doesn't matter how much you rest.The simpilist things in life we all take for granted can result in servere exhaustion, this might not show straight away few mins,hours or even the next day.I know myself that if i have hospital ,or drs opd,ME Clinic to go to ,it wont effect me then although i feel knackered all the time ,it effects me the next day im just good for nothing.I cant stress enough people experience this in different ways these are my examples.
ME ...is often described as an on going "Hangover"that doesnt go away but varies in intensity from day to day hour to hour.I always describe mine as "serve flu"The real flu not man flu...lol,not even a cold.The flu where every part of the body ,joint aches ,along with the feeling of your nerve endings are raw example of this is when you cant find your body a comfortable place to rest.You cant stand anyone to touch you ,even have your children sit on your knee as your nerves are raw.Thats the only way i describe myself.Of course with the girls wanting cuddle off mum who can't stand them near her,takes alot of explaining,and the biggest thing i feel is "GUILT"for not being able to do this to be a mum.I will go more into guilt later on this was just an example of the things i have and am experiencing over past few years since diagnosis .Hopefully many of you will relate to this and leave comments.
The Main Cause of my ME
In 2006 i had to go into hospital for abdominal surgey ,little did i know my life would never be the same again,and it would change my life completely.After surgery i came home and think i slept for a month i can't recall much,people would come and visit me id be chatting in middle conversation and fall asleep id wake up some minutes later and carry on talking.Hubby and girls found this funny in away.This kept happening id start to eat my meal fall asleep in it,drink drop it,the cups and glasses ive dropped whilst holding and falling alseep untrue.The seriousness started to dawn on us all 5 weeks had past they could no longer blame my situation on the Anasesthetic or infection i had post off.So we discussed this and went to Gp ,this is when it all really started ,tests for thyroid,bloods for various other ailments that have similar side effects .
Eventually when we went back to see the GP my husband told him nothing had changed .The Doctor was lovely he said he didnt think it would.He continued to listen to my husband as he had told the doctor that he is having to take another month off work to look after me as he was worried about the safety side.As one day Andy had to pop into work for a meeting i put a pan on to boil went back in lounge bingo i was out for the count until the smoke alarm started.We or Should i say i have had a few near misses with the fire alarms !!!Andy had already been off 3months taken all his annual leave that he could and now on unpaid leave.If he had appointments hed make sure someone was here to sit with me,as couldnt leave me alone.
What he was worried about hes out the house form 7.30 until 5.30-6pm and his main priority was the safety of me and his concern for my children,then they were small.
This is where the gp came to are help he was fantastic arranged for social worker to pop in that afternoon to help him so he could go back to work as no money was coming in to pay bills or keep roof over our heads.
This is where i had problems big problems Guilt,Depression go together.I was guilty that i couldnt look after myfamily ,walk my children to school i had done in the past the thought of it scared me ,to me something simple like that felt like walking mount eversest or similar.Of course depression came to visit as id get depressed that i couldnt enjoy being a mother to my children when i should be.Instead sleeping 21hrs aday in horiffic joint pain ,having the heating on when the temp was 82 summer ,as couldnt control my temperature.All these things build up and eventually get you down.
It was then explained to me that i had gotten ME one of 2 ways either the trauma of having the operation or the post op infection that occurred 2 days after discharge from hospital.There are many other ways that people can unfortunately be diagnosed with this illness but today my Gp has put this down to one of those or even both.
post operative infection
infection after travelling abroad
allergic reaction
these are just afew of many .
My days as i recall very similar now the only difference my children have grown up the last 3 years living with a mum who suffers with Me .They are the kindest caring children i could ever wish to have ,there understanding now is so much better they are older but still hard sometimes to accept .But they care for me ,love me and will do anything to help me .
My next post will be about the help i received from the Gp and the stigma that goes with ME from others both adults and children towards me and my family.


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  2. Sory Jude
    Will repost later as it was mixed up with my keyboard and never checked before submitting Sorry

    I will repost at a later date as my nephew has just been diagnosed

    liz xx

  3. Hi sweetie pop over to my blog I have something for you. Just scroll about half way down and you will see love cheryl xxxxx