It's been a while...ME/CFS Awareness Week 9-15th May

Morning all well it has been awhile since i posted but life has been hectic the past 3 months .Whihc has had a knock on effect on my ME.I will go into more details later post.The worst news is that ive had to come of the medication given to me by papworth hospital this was due to a servere reaction yet again to the medication i had to keep me a wake.As a result with everything else going on im so fatigued and tired some days back to sleeping 20 hrs aday.that was the reason i went on the medication whihc i must say did work kept me awake .But theres so many side effects always the way you find something that makes abig difference to everyday livivng but with it comes the chance of the effects.Both times ive tried it ive had different servere medical effects.The GP has taken me of it .so now im back struggling to pace myself so's i dont sleep the days away.Mind lately theres not much chance of thatas my body just aches ,my joints ,my nerve endings you name .Some days just sleep ,lie on the sofa unable to get comfy position.

I promise i will be back soon with an update as all sufferes know you just take a day at a time.

Hope your all pacing well

love n hugs judex

Hello all,

Im so sorry ive not been on for while things have been so hectic.With my health mum being rushed into hospital,my daughter having her operation the start of the year is certainly a hospital one...lol.
I have recently had to come off my Modafinil medication papworth put me on some time ago.After having 3 month trial and getting severe side effects my gp took me off.I went back on them in November and now again have had to come off due to the side effects.I cant beleive im saying this but sleeping all day is far better than the side effects.
I was so interested to see the article lately about the poor girl who had ME for 17yrs,finaly with her nmums help died.It has certainly brought ME into the news once again whihc is good more understanding of this crippling life changing illness needs to be made aware & not classed as yupiee flu or god damn laziness.May she rest in peace ,i thank the l;ord i am no longer in that state although im much improved i still suffer daily some days not having the energy to get out my pjs just about come down stairs.
Thanks Heather for the interesting article about Norfolk/Suffolk ME Support and how they are now improving the services about time i will keep you updated if i hear anything .
hope your all keeping well as can be expected and promise to pop by more often and update you all
love n hugs judex

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
judex

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
judex

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

Morning

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