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, 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


  1. My Jude, its like reading my own blog! Thank you for the mention about my blog. I'm sorry you also got caught up in the busy bodies!!

    I will email you re the diet I am on.

  2. What is your email address? It doesnt like the one I got from your profile!

    Mine is hlaurence@btinternet.com
    helen x