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.

Thursday, 28 May 2009

Morning all

Well this certainly been an upside down week for me ,but i always find it harder to cope when it's holidays .Roll on tuesday when normality sets in and pacing begins again.It is so hard to pace myself like i normaly do when the girls are at home and sometimes you just cant do it.
So i know for a fact im in for some catch up and usually it will start the weekend before they go back,although must admit havent over done it so no boom to bust as they say at the Me clinic.
I have asked a few people who i have found out have this illness and suffer like we all do to be a guest on the blog to see and read their stories .There's never one sufferer the same ,but thought this would also be very interesting to get a insight into how they where,were they disgnosed and what may have caused it. How this has changed their lives
Which i think will be an interesting read for all of us.
Well i shalle hopefully be back soon take care ,have stress & pain free day and don't over pace.
love n hugs judex

Thursday, 14 May 2009

Morning...where has my life gone

Well it has been a few weeks since i posted im sorry for that but thats where ME/CFS & Fibromyalgia take over your life.Thats one thing i do miss my life!Where has my life gone?the "Normality of your everyday life"The getting up in the mornings with out feeling tired ,without having headaches ,forgetting things ,being able to get out of bed in my case these past few weeks has been more than a struggle believe you me!Then the guilt returns as you havent the energy to do anything,not even the simpliest of tasks like getting dressed.To me that would be like doing the london marathon ,thats how it has been since i last posted.
Which brings me onto a more hurtful i surpose topic of living with ME/Fibro.That is when i was first diagnosed .My husband needed someone to take the children to school at this point they were only small.Something hit us in the face.The fact that who you thought where friends turned out not to be !Not everyone but most of my friends i met through taking the girls to school and the pfsa just didnt bother.
The hardest part came when the girls used to come home from school saying"mum so and so asked me why doesnt your mum bring you to school anymore ,so i explained you where not well and had ME.Her friend replied my mum says your mum is just bloody lazy and your mum doesnt even get dressed just slobs about!!Parents just talked in front of their children not thinking being ignorant as usual.But This just showed me through ignorance what people thought.I surpose as yes before when i was healthy or had more energy about 6 of us used to go to the gym every morning on monday wed,&friday straight after dropping the children off at school.It Soon became apparent that these where no longer so called friends.
Not one of those so called friends ever ask me or came and visit me to see for them selves how or what i was like,just presumed i was swinging the lead as they say.If only i was ,little did they know or for that matter want to find out if i was .
To this day they don't come near and have no contact,but living in a village people talk and soon word got out and it was the girls i felt for some of the heartless things said by parents infront of their children and back to me through their children to my girls.It was the girls i felt for but they stood up and told them boy did they tell them.But it shouldnt have to be like this more awareness of this terrible decapitating illness should be made aware to the public.Hopefully now as time goes by, millions of us being diagnosed who suffer from this illness awareness & knowledge will start to be discussed more .I have noticed more and more articles in papers and tv programmes coming out ,but this needs to grow and become well like the awareness towards "Cancer & Aids"know body doubts you when you say you have one of those illnesses as they know what it's all about.Well it should be the same for all us sufferes and carers.
I came to the conclusion it still is ignorance on there part and not enough awareness in the public eye as there should be and believe you me that should be with some of the Drs i have come across who totaly dont believe in such an illness.So how can the public be educated if the proffesional people arent or dont believe in such an illness not being made aware of this disabilitating illness.Thats why so many sufferes are not being diagnosed early enough with this iillness.But having to go back and forth before the gp takes you serious.
Thank goodness that my doctor wasnt one of those people and was a believer and educator in this field i dont realise how lucky i was having a GP like him thanks to DrHicks i was treated early after everything that could have been done was .He said to me i need to get these tests done to rule out all possiblities but have fairly good idea what you have but want to be 100%.I remember going back with Andy to get the results.He sat in his chair said im glad to say your as fit as a fiddle and all tests have come back normal ,There's me thinking why do i feel like ive been run over by a bus!.So he said as he was laughing at my comment my thoughts where right you have ME,and from that day on he never stopped helping me the refferals to the ME Clinic,Sleep Clinic in Papworth hospital,the help,he got me a social worker.Told Andy we shall have things sorted so you will be able to return to work not worrying about your wifes safety during the day.
I am still a strong believer of you have to be educated made aware more of this illness before you can educate others.
Well i hope you all have a good weekend pain free even if only for a while.I have added some articles top rt on sidebar that maybe of interest to you,or your carers