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, 10 September 2009

Brain fog again

Just checked my post blow me i had already posted about papworth ...lol

Pain pian and more PAIN

This week i have suffered with my joint pains terrible to the point where ive ended up in bed yet again!!The good news well i hope it is about 18months ago i was given a drug or should says perscribed sounds bit better ...lol to help with my CFS.Anyway after 3 months it was fantastic my quality of life from where i am had improved 65% not a cure but a bonus .Until for week i suffered pins and needles in my left thumb first then hand then the whole of my arm was effected .I went to Gp who stopped the drug finito,i rang papworth and told them she said leave it with me .Anyway cut long story short said shed speak to consultant and let him know .
well few weeks ago had my regular 6month check up and the consultant done some research and never heard of this happening with this drug .
So im pleased to say they are going to give me another try yipeeeeeeeeeeeeee,as want to see how i get on this time and will monitor me closely .Bet GP not too happy as he wasnt all that last time as it is very expensive one of these post code lotary drugs i feel as we had to get ok from PCT.You watch same thing will have to happen this time.
Well i have at the weekend managed some crafting for my Alzehimers fund raising so pleased about that i do find crafting very theraputic if only i can do little at a time it helps .
Anyway do hope you all have good painfree weekend
Take care gentle hugs

Tuesday, 8 September 2009

Im still here.....

Well the school holidays are over and hopefully some sort of normality sets in....whats normality sleeping, daily pain,aches headaches i could go on but won't....I must say big hugs and thanks to my 2 daughters who are still young but have been a god send to me this past 7 weeks and let me rest when i required whihc basically all timesome hours every day .So thanks girls!!!!!
Well i have been over to Papworth to see my consultant and due to my sleeping pattern i have the new regime which i will start today and get back on track with pacing.I also yesterday had phone call from papworth telling me that consultant wants me to re start with the modafanil which i took last year after 3 months had terrible side effect of numbness in left arm and fingers and gp took off straight away due to the side effects of the drug are nasty ,and this obviously had a reaction with my nervous system.
So next week i restart it until i go back in late November to see him. We shall see what happens and if same effects reoccurr .He believes this is not a side effect that 's why i have to re take if by chance happens again he will think of another drug for me to take.
This medication did work for me although it is very expensive and yes you guessed had to get ok from local pct,so see what happens this time.
Basically it helps me stay awake during the day unfortunately doesnt take the rest of the Me/CFS ailments that i have away but whilst taking this my life was half decent and managed to get along with my pacing even on bad days .No longer sleeping between 17-22 hours like i do now,even then wouldnt care if i woke up feeling refreshed but wake up totaly knackered and thats being honest!!!Will keep you updated as i go along.
So we shall have to wait .
I am getting abit fed up as i have but on over 2 stone since having the steriods and now just cant shift it ,eating healthly when i can face food little and often due to the nausea .My trouble is excercise nil...takes me all my time to walk the stairs to bed at night that feels like im walking Everset...this is really peeing me off as everytime go to consultant you must loose weight !!!hey not for want of trying i can tell you.From someone who was fit went to gym 3 times aweek to just about having energy to get to bed at night comes abig blow!!!So what else do i do!!!just no way situation and this is also now getting me down on top of every thing else going on at the moment .
They do say the more stress you encounter the more it takes it out on your condition as doesnt help ,but it does pee me off when medical staff turn round say must a loose a little weight ...aaaarrrrgggghhhh,
All i have to say put your feet in my shoes for a month then you may realise what im trying to get through to these people.That yes healthy diet no appetite but hey no exercise either!!!!!
Sorry to havbe amoan but im so down stressed out and trying to take aday at a time at the moment .Worried about my daughter going back to school today who is and has been bullied to point she's been threated by another girl that shes dead meat!!!lovely girls these days a spiteful and worse than boys when bullying comes along.Hopefully anew term year and things may start to look up for her and either bullies have grown up!if i didnt worry or care then i wouldnt be human don't you think?.....im only human at the end of the day and it's my daughter thats having to go throught this .Iwas bullied at school for couple weeks but nothing like what she has had to encounter this all has an effect on my ME/CFs.
Anyway on a happier note im using some of my pacing time to fund raise for "Alzehimers"as you maybe aware im a crafter find this so relaxing and im helping raise funds for the Alzheimers home that we had to put mum in a year ago.So im keeping occupied with something i enjoy and at the same time helping them and helping with my pacing.
I do hope you all have a pain free day and sending love and big hugs to all fellow ME/CFS friends in blog land and beyond.
Gentle hugs

Wednesday, 19 August 2009

So sorry

It has been a couple of months since i last posted im so sorry.but thats how things go im afraid had bad few weeks .I attended Papworth on Monday for my sleep clinic as im so tired at the present have got my sleep down to 18-20hrs aday after having to come off the medication.
i have now got anew sleep planner to work around with my pacing planner .But dont these medical people realise that sometimes it isnt flexible todo what they want .dont get me wrong i want to get better or even improve alittle so can have some quality time with my family and a life as such!At the moment with school holidays it is hard ,and the gulity pangs come flooding back as not spending as much time with the girls as a mum would like .
so back to my sleep regime this is what they want me to start from now on; This is daily....

go to bed at 9.30pm wake at 7pm

go back to bed at 9am until 2pm

go back to bed at 4.30pm until 6pm

This will be great to try when the girls are back to school but right now find it hard with them being at home .Luckily i have 2 girls who have had to grow up with my me for past 3yrs and now being 11 and 12 yrs they are very understanding but still odesnt help with the gulity panks i encounter.Hubby is very supportive but hes out the house from 5.15am until 6pm at night 5 days aweek.What we are trying to over come by going on this regime /sleep pattern is not sleeping early evening which i have been doing sort by 7pm im away with fairies find hubby shouting cuppa there and being m 10pm at night,i then retire to bed to find myself exhausted but wide awake from 3 am for the day just cant sleep and i stay in bed no longer than half an hour trying to get some sleep if it doesnt work then they advise to get up.
this is the strange thing im wide awake but so fatigiued and exhausted why cant i sleep i ask myself .
i shall try my best at this regime see how it goes but have few problems going on and youngest daughter going in for op on her ears soon 17th sept im awaiting to go and have my ligament repaired in rt thumb after a result of a fall at beginning of this year ,and with opther personnel problems im sure stress is one thing that doesant help anyone at any time not just ME/cfs suffers.
i was reading ablog this morning http://meandmeagainsttheworld.blogspot.com/ and she suffers from ME/CFS and i read that someone had called in benefits office fraud squad ,this totaly annoys me as this happened to me when first diagnosed and it is hurtfull and angry that someone should even pry into your life and make a decision that doesnt even concern them,when prob dont even know what ME entails .Iknow when shortly before it happened to me rumours went around and got back to me that it was obvious mothers at school were discussing the fact i dont walk my girls to school anymore in front of the children as my girls came home after hearing it from there friends that there mums think that i was just lazy .But how dare these people invade your life not knowing the circunstances just presuming i was too f....lazy to get out bed to walk my girls to school to me this is just ignorance on there part.
But when i read this on her blog page i know exactly what she went through ,not being funny theres far more people who get these benefits and work and get away with it,i just wish people would mind there own buisness and stop gossiping unless they know the facts.It does make me sooooo .....angry. i wish her luck in the future and you may never find out who did it ,i have good idea but again with me i will never really know.
I promise to be updating this regulary as i can but sometime the illness has a big impact on your life and fnd your self unable to get outta bed let alone jump on the laptop.
I would however be interested in any diet regimes that may help with the ME and that sufferers have found helpful i know not always what works for one doesnt work so good for another trial and error realy just like life!
Today i am so physically and mentally exhausted ,my brain is full of thick fog my body doesnt know what it's doing yesterday i had such horrible weepy/crying day where i found bursting into tears was just "normal"i have alot of stress ,personnel probs that does take it's toll on any human being not just people with ME
I just live day to day hour to hour ,lately havent even got the mojo to do my beloved crafting i have so much going on in my head.Never know maybe my mojo has gone on it's annual holiday will return soon when im feeling alittle better.
Who knows???then i see the news and see theres people worse than i am although sometimes doesnt feel like that to me and im the only one going through this alone as really your family dont know what you go through and feel you can explain it but ist not like suffering first hand as they say.Well i shall close with this
"Treat people how you would want to be treated "
take care love n hugs judexxx

Monday, 8 June 2009


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

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

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.
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.

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