I was unable to post on the 12th as i had drs opd and then little beknown to me i was rushed to hospital to see consultant at the eye treatment center.I have been suffering from eye pain for about 7 days didnt do anything about it,if everyday i went to see gp due to pain id be there daily!!Anyway explained my symptoms and explained it had got worse felt like pain and pressure.Well un be known to me when she examined the eye then did the normal optical reading chart.Left eye zoomed through like dream.Rt eye to which im having the pain well OMG covered good eye up i was gobsmacked i could only read frist 3 letters they being the large the rest being a blurr!!!So off i ended up at hospital after several tests and eye drops .as my girls said coming home with eyes like a Vampire ...lol such away with words my girls bless em.Im now on 2 lots eye drops 4 times aday,they dont know what it is thats caused this but know it's not infection still blurr in rt eye i was just amazed i hadnt noticed obviously my left eye is doing all the work.Anyway i have to return mon/tuesday for more tests one being feild test.Hopefully find out what it is ,is it related to my ME who knows.Anyway i have done a wee bit bloggin not much as shouldnt reaslly be on here but copied this from a blog i follow thought maybe interesting for my readers with and without suffering from ME.I will update about my eye,but for now thats all for cuple days.
hugs judexx
Happy ME/CFS awareness day!!!!
I have copy & pasted this post from Laurel's blog because I think it is well presented & perfect for people to learn more. Today is International ME/CFS Awareness Day. Unless you have or know someone with ME/CFS, you probably wouldn't know that. And even if you did know, you probably won't read about it in any newspaper, nor hear about it on any media outlet. Like many ME/CFS patients themselves, this day tends to go by unmentioned, unnoticed, unheard.So, in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:1. Chronic Fatigue Syndrome (CFS) is a serious disease with a ridiculous name. CFS is also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E). It is often abbreviated ME/CFS.2. ME/CFS is a complex, multi-systemic illness, effecting the immune, endocrine, cardiovascular, autonomic, and central nervous systems. It is classified by the World Health Organization (WHO) as a neurological disease.3. In order to be diagnosed with ME/CFS, you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50%, as well as at least four of the following symptoms: post exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory loss or difficulty concentrating. These symptoms must be present for at least 6 months or longer. ME/CFS patients often also suffer from neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, flu-like symptoms, shortness of breath, chest pain, and other symptoms.4. According to the CDC, ME/CFS can be as or more debilitating than multiple sclerosis, lupus, COPD, HIV/AIDs, and end stage renal failure.Dr. Nancy Klimas, an immunologist who splits her time between ME/CFS and HIV/AIDS patients, was recently quoted in The New York Times as saying:
"I can tell you, if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."5. ME/CFS afflicts both genders of all classes and all ages, including young children. Approximately 1 to 4 million Americans have ME/CFS. That's more than breast cancer, AIDS, or lung cancer combined.6. It has been estimated that about 25% of ME/CFS patients are fully disabled, and many of those are homebound or completely bedridden.7. ME/CFS often has a viral and sudden onset. Many viruses have been linked to CFS, including EBV (mononucleosis), CMV and HHV-6. Bacterial infections have also been associated with ME/CFS, including mycoplasma and Lyme Disease.8. In October of 2009, Science Magazine published a study showing a link between a newly discovered human retrovirus (XMRV) and ME/CFS. This study was conducted by the Whittemore Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic.9. There are over 4,000 published studies showing a clear, biophysical pathogenesis in ME/CFS. Some abnormalities found in ME/CFS include: low natural killer cell count and activity, activated T cells, increased levels of cytokines, abnormalities in brain metabolism, mitochondrial damage, orthostatic intolerance, low blood volume, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, glutathione depletion, oxygen toxicity/cellular hypoxia, diastolic cardiomyopathies, left ventricular dysfunction in the heart, and delayed VO2 max (maximal oxygen utilization) following exercise or exertion.10. ME/CFS is thought to cost the U.S. economy about $25 billion a year, and perhaps more. The average cost per family of a ME/CFS patient is approximately $25,000 per year (including unemployment).11. Despite its prevalence and seriousness, ME/CFS is still one of the least funded of all illnesses in the United States (in the bottom 12). More money is spent each year studying hay fever than ME/CFS.12. Currently, there are no FDA approved treatments for ME/CFS, and there is no known cure.Sources:Phoenix Rising: About ME/CFSWhittemore Peterson Institute The CFIDS Association of AmericaSome things you can do to help:1. Help spread the word that ME/CFS is a serious and multi-systemic disease. If someone has false misconceptions about the illness, speak up and correct them.2. Don't call CFS "chronic fatigue." CFS is a complex illness effecting many different organ systems; it is not a single symptom. Referring to it merely as "chronic fatigue" (rather than CFS or ME/CFS) is not only incorrect, it can actually feel disrespectful.3. If you know someone with CFS, let them know you care. Drop them a line from time to time (without expecting a response). Listen to what they have to say, and ask if there's anything you can do to help.4. Become educated and involved. Read up on ME/CFS from legitimate sources and stay informed. Join advocacy groups such as the ones linked on this page, sign petitions, watch online webinars, and/or write to Congress to request more funding and awareness.5. Take a moment to ask the Secretary of Health to implement the recommendations of the CFS Advisory Committee. The CFIDS Association makes this easy for you. The letter is already written, so that all you have to do is add your name and address. There is room for further comment should you choose to add any additional thoughts.6. Wear a blue ribbon to show your support. If you are on Facebook, consider putting a twibbon on your profile picture to help raise awareness.7. As noted above, ME/CFS is one of the least funded of all illnesses. If you can afford to, make a donation to one of the many ME/CFS charities, such as the Whittemore Peterson Institute, The CFIDS Association of America, or PANDORA. If you are unable to donate, you can instead write to your local senators and representatives and ask that they allocate more funds toward ME/CFS research.
Friday, 14 May 2010
ME Awareness WEEk
Why is it important to raise awareness about Myalgic Encephalomyelitis (ME)? by Nicola Karen Reiss
Why am I making such a fuss about this disease and why should you listen to me? The first reason is that this is an illness, most likely caused by either by an enterovirus (like polio) or possibly by a retrovirus (like HIV), which anybody can get – you, your child, your partner, your friend, your lover. From research and experience we know that exercise of any kind makes the illness worse. Your doctor doesn’t know this. Doctors around the world are trained neither to recognize the symptoms of ME, nor how to treat it. There is no cure. Your government is spending no money on bio-medical research into prevention or treatment of this devastating neurological illness that affects more people than MS. The suicide rate for people with ME is unacceptably high; people have died of ME in epidemics, but most deaths from ME go unrecorded as they are (like deaths from AIDS) due to related conditions such as cancer and heart disease. The second reason to listen is to protect children and young people with ME from dangerous treatment, from an unnecessary worsening of their condition, and from possible forced removal from their families (yes, it happens). Children are particularly vulnerable with this illness, and children as young as five have been known to get it. Because there are as yet no easy tools for diagnosis, such as a simple blood test, children are frequently not believed when they complain of feeling unwell. In both the UK and the USA there are cases of social services forcibly removing children from their families and placing them in psychiatric units, as if they were mentally ill. Having just given away kittens I am living with an upset and bereaved mother cat – I cannot begin to imagine the anguish of caring parents whose sick child has been forcibly removed from their care; yet this is happening in our societies, to children sick with Myalgic Encephalomyelitis. ME is (like MS) a neurological illness, identified and classified as such by the World Health Organization (WHO ICD- 10 G93.3), yet misinformation and obstruction by psychiatrists and insurance companies has blocked bio-medical research into the condition, and has ensured that medical doctors remain in ignorance, or are unable to treat ME patients appropriately. If you are in any doubt about these statements I encourage you to read the Professor Malcolm Hooper report (http://www.meactionuk.org.uk/magical-medicine.pdf) or the book Osler’s Web by Hillary Johnson (available from Amazon). Look up the names of Sophie Mirza and Lynn Gilderdale, young women both dead from ME, both mistreated by the health authorities in the UK. Read about Alison Hunter who died of ME aged 19 in Australia, or read about teenager Ryan Baldwin, forcibly removed from his family by social services in North Carolina on 1/23/2009 (now back home and doing well). ME may not kill you straight away; it is not as scary as ebola or malaria or dengue fever; but it will take away your life as you know it. Although some people only suffer from mild symptoms and are able to continue working and enjoy some kind of (usually restricted) social life, approximately 25% of people with ME are completely bedridden, living in darkened rooms, unable to feed or clean themselves, totally dependent on family members. These are the people with ME whom you don’t see. Others, like myself, are visible in the street once in a while (I have the energy, on average, to leave my flat twice a week), but we have no social life – we can no longer visit cafés or restaurants, we cannot enjoy a walk on the beach or a day out shopping or a family meal. These simple activities are too painful. What can you do?Learn to recognize the symptoms of ME – early diagnosis may prevent the illness from becoming severe. Understand that exercise makes the illness significantly worse. If you suspect that you, or someone you know, might have ME, stop all exercise and do whatever it takes to get a correct diagnosis. Symptoms of ME include (but are not limited to): dizziness, brain fog (a fuzzy feeling in your head to varying degrees), orthostatic intolerance (you find it uncomfortable to remain standing for more than a few minutes), difficulties with concentration and memory, lack of energy, a heavy feeling or pain in muscles, post-exertional malaise (i.e. exercise makes you feel worse, not better), a general feeling of being unwell (similar to flu or a bad hangover), headaches, extreme fatigue that is not relieved by sleep, difficulties sleeping, digestive problems, extreme sensitivity to light and noise.Push for government funding into bio-medical causes of, and treatment for, ME. Contact your MP, your senator, your congressman or woman and ask them to ensure that government funds go into the right kind of research. In the UK vast sums of money have been wasted on research into trials of counseling and exercise for people with ME. Would you expect counseling and exercise to help people with MS, lupus or AIDS? No! Nor will they make any difference to people with Myalgic Encephalomyelitis. Government funds should be spent on research into ME in the same proportion as they are spent on MS, lupus, AIDS, or similar diseases. All we ask for is equal treatment – in provision of research funds, medical care, and social services. One last word – what on earth is “chronic fatigue syndrome”? “CFS” is an idea constructed by psychiatrists and insurance companies to belittle the serious illness Myalgic Encephalomyelitis in order to avoid expensive insurance payments or disability support payments. The correct name for the disease, as listed by the WHO, is Myalgic Encephalomyelitis. Fatigue is a common symptom of many illnesses – cancer, MS, AIDS, lupus, flu, and so on. It is no more a defining feature of ME than it is of MS. Unfortunately many people have been misdiagnosed with “CFS” by badly informed doctors when in reality they have other illnesses that are difficult to diagnose, such as cancer, lupus, MS, etc. For this reason it is urgent that doctors learn how to correctly diagnose ME. For more information the work by Dr Byron Hyde is particularly useful (see: http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf)ME is not limited to Europe, Australasia and North America. I became ill while working in East Africa; cases have been reported in India, and there are support groups for people with ME (PWME) on Chinese social networking sites.If you would like to learn more, I recommend these websites: Nightingale Research Foundation (Dr Byron Hyde) http://www.nightingale.ca/index.php?target=homeThe Hummingbirds’ Foundation for M.E. http://www.hfme.org/ME Action UKhttp://www.meactionuk.org.uk/Invest in MEhttp://www.investinme.org/index.htmWhittemore Peterson Institute for Neuro-Immune Diseasehttp://www.wpinstitute.org/National Alliance for Myalgic Encephalomyelitishttp://www.name-us.org/The Young ME Sufferers Trust http://www.tymestrust.org/The Grace Charity for M.E.http://www.thegracecharityforme.org/index.aspPlease repost freely (without changes) and pass this message on to friends and family!
Why am I making such a fuss about this disease and why should you listen to me? The first reason is that this is an illness, most likely caused by either by an enterovirus (like polio) or possibly by a retrovirus (like HIV), which anybody can get – you, your child, your partner, your friend, your lover. From research and experience we know that exercise of any kind makes the illness worse. Your doctor doesn’t know this. Doctors around the world are trained neither to recognize the symptoms of ME, nor how to treat it. There is no cure. Your government is spending no money on bio-medical research into prevention or treatment of this devastating neurological illness that affects more people than MS. The suicide rate for people with ME is unacceptably high; people have died of ME in epidemics, but most deaths from ME go unrecorded as they are (like deaths from AIDS) due to related conditions such as cancer and heart disease. The second reason to listen is to protect children and young people with ME from dangerous treatment, from an unnecessary worsening of their condition, and from possible forced removal from their families (yes, it happens). Children are particularly vulnerable with this illness, and children as young as five have been known to get it. Because there are as yet no easy tools for diagnosis, such as a simple blood test, children are frequently not believed when they complain of feeling unwell. In both the UK and the USA there are cases of social services forcibly removing children from their families and placing them in psychiatric units, as if they were mentally ill. Having just given away kittens I am living with an upset and bereaved mother cat – I cannot begin to imagine the anguish of caring parents whose sick child has been forcibly removed from their care; yet this is happening in our societies, to children sick with Myalgic Encephalomyelitis. ME is (like MS) a neurological illness, identified and classified as such by the World Health Organization (WHO ICD- 10 G93.3), yet misinformation and obstruction by psychiatrists and insurance companies has blocked bio-medical research into the condition, and has ensured that medical doctors remain in ignorance, or are unable to treat ME patients appropriately. If you are in any doubt about these statements I encourage you to read the Professor Malcolm Hooper report (http://www.meactionuk.org.uk/magical-medicine.pdf) or the book Osler’s Web by Hillary Johnson (available from Amazon). Look up the names of Sophie Mirza and Lynn Gilderdale, young women both dead from ME, both mistreated by the health authorities in the UK. Read about Alison Hunter who died of ME aged 19 in Australia, or read about teenager Ryan Baldwin, forcibly removed from his family by social services in North Carolina on 1/23/2009 (now back home and doing well). ME may not kill you straight away; it is not as scary as ebola or malaria or dengue fever; but it will take away your life as you know it. Although some people only suffer from mild symptoms and are able to continue working and enjoy some kind of (usually restricted) social life, approximately 25% of people with ME are completely bedridden, living in darkened rooms, unable to feed or clean themselves, totally dependent on family members. These are the people with ME whom you don’t see. Others, like myself, are visible in the street once in a while (I have the energy, on average, to leave my flat twice a week), but we have no social life – we can no longer visit cafés or restaurants, we cannot enjoy a walk on the beach or a day out shopping or a family meal. These simple activities are too painful. What can you do?Learn to recognize the symptoms of ME – early diagnosis may prevent the illness from becoming severe. Understand that exercise makes the illness significantly worse. If you suspect that you, or someone you know, might have ME, stop all exercise and do whatever it takes to get a correct diagnosis. Symptoms of ME include (but are not limited to): dizziness, brain fog (a fuzzy feeling in your head to varying degrees), orthostatic intolerance (you find it uncomfortable to remain standing for more than a few minutes), difficulties with concentration and memory, lack of energy, a heavy feeling or pain in muscles, post-exertional malaise (i.e. exercise makes you feel worse, not better), a general feeling of being unwell (similar to flu or a bad hangover), headaches, extreme fatigue that is not relieved by sleep, difficulties sleeping, digestive problems, extreme sensitivity to light and noise.Push for government funding into bio-medical causes of, and treatment for, ME. Contact your MP, your senator, your congressman or woman and ask them to ensure that government funds go into the right kind of research. In the UK vast sums of money have been wasted on research into trials of counseling and exercise for people with ME. Would you expect counseling and exercise to help people with MS, lupus or AIDS? No! Nor will they make any difference to people with Myalgic Encephalomyelitis. Government funds should be spent on research into ME in the same proportion as they are spent on MS, lupus, AIDS, or similar diseases. All we ask for is equal treatment – in provision of research funds, medical care, and social services. One last word – what on earth is “chronic fatigue syndrome”? “CFS” is an idea constructed by psychiatrists and insurance companies to belittle the serious illness Myalgic Encephalomyelitis in order to avoid expensive insurance payments or disability support payments. The correct name for the disease, as listed by the WHO, is Myalgic Encephalomyelitis. Fatigue is a common symptom of many illnesses – cancer, MS, AIDS, lupus, flu, and so on. It is no more a defining feature of ME than it is of MS. Unfortunately many people have been misdiagnosed with “CFS” by badly informed doctors when in reality they have other illnesses that are difficult to diagnose, such as cancer, lupus, MS, etc. For this reason it is urgent that doctors learn how to correctly diagnose ME. For more information the work by Dr Byron Hyde is particularly useful (see: http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf)ME is not limited to Europe, Australasia and North America. I became ill while working in East Africa; cases have been reported in India, and there are support groups for people with ME (PWME) on Chinese social networking sites.If you would like to learn more, I recommend these websites: Nightingale Research Foundation (Dr Byron Hyde) http://www.nightingale.ca/index.php?target=homeThe Hummingbirds’ Foundation for M.E. http://www.hfme.org/ME Action UKhttp://www.meactionuk.org.uk/Invest in MEhttp://www.investinme.org/index.htmWhittemore Peterson Institute for Neuro-Immune Diseasehttp://www.wpinstitute.org/National Alliance for Myalgic Encephalomyelitishttp://www.name-us.org/The Young ME Sufferers Trust http://www.tymestrust.org/The Grace Charity for M.E.http://www.thegracecharityforme.org/index.aspPlease repost freely (without changes) and pass this message on to friends and family!
Saturday, 8 May 2010
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
Thursday, 4 February 2010
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
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
Thursday, 10 September 2009
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
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
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
judex
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
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