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