Sorry i haven't posted for while ,been having trouble with my right thumb ,hand still.But at least i can see a light at the emnd of the tunnel .My opd for hand specialist finaly arrived.So i go in a couple of weeks.Due to a fall in feb as you do i put hand out.But this time didint break it i damaged my UCL Ligament whioch runs down thumb to elbow ,and with being rt handed this is big loss.As when i use it it pings just as if im dislocating it all the time the pain i get in hand and elbow id tremendous.They have told me that i will have to have it repaired.If it wasnt my rt hand id think twice as last time i went in i ended up being diagnosed withME/cfs and eventually fibromyalgia.My youngest has a valid point bless her this time they may take the Mw back!!!and you be yourself i though such cute thing to say let alone think.WE CAN ONLY LIVE IN HOPE..
Soon i have a fellow suffer going to tell you how she was diagnosed with Cfs &Me her story will be coming soon
Hope you all have restful painfree day.
gentle hugs judex
Monday, 8 June 2009
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
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
judex
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
judex
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.
Clumsiness.
Hypersenseitivity Light & Sound.
Dizziness.
Numbness.
Nausea.
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.
Headaches.
Diarrohea/Constipation.
Functions in Controlling Body Temperature .. Fluctuates between Hot & Cold.
Worsening of Symptoms Under Increased Stress.
Anxiety
Loss Appetite.
Depression.
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.
OTHERS ARE ....
Trauma,
post operative infection
infection after travelling abroad
allergic reaction
Stress
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.
ME/CFS if you are unfamiliar with the condition and its history. ME is the common name for Myalgic Encephalopathy, sometimes also known as Myalgic Encephalomyelitis. CFS is the common name for Chronic Fatigue Syndrome.
Despite the fact that the Department of Health now accepts ME/CFS as a genuine medical condition, diagnosis can still pose a problem because ME/CFS symptoms are similar to those present in a number of other medical conditions.
Also alot depends on your GP,i was fortunate that he was great ,but i know some Gp's just don't recognise this as an illness.My GP i have to say hats off to him ,he was sending me for every test under the sun ,but give him his due said im sure i know what it is but want to rule out anything else first!All my tests came back normal , the result was diagnosed as ME,that was in Feb 2006
Before i start let me just say that ME effects everyone differently There are so many descriptionsof the disease from patient to patient,effects each individual differently.
Despite the fact that the Department of Health now accepts ME/CFS as a genuine medical condition, diagnosis can still pose a problem because ME/CFS symptoms are similar to those present in a number of other medical conditions.
Also alot depends on your GP,i was fortunate that he was great ,but i know some Gp's just don't recognise this as an illness.My GP i have to say hats off to him ,he was sending me for every test under the sun ,but give him his due said im sure i know what it is but want to rule out anything else first!All my tests came back normal , the result was diagnosed as ME,that was in Feb 2006
Before i start let me just say that ME effects everyone differently There are so many descriptionsof the disease from patient to patient,effects each individual differently.
Welcome To My Blog
Welcome to my blog here i will share with you my thoughts,feelings,experience & information about ME/CFS and also Fibromyalgia hopefully will be of some help to you .Eventually I 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 had to 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.thanks judex
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