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.

Saturday, 15 January 2011

News Update...Been few Months...im still Here!

I am sorry ive not been around to update you but since September everything seems to have gone bellies up.I suffered with a pain around my eye for 5days on the 6th it got so bad a trip to the drs my hubby informed me.Well i went and saw regular gp who is fab!chatted explained what id experienced ,then she asked me to read the eye sight board well left eye sailed through.To my horror my rt eye i couldnt see a thing except a blurr.Well that was it all go from then on.How did i not realise ?well obviously my left eye was compensating for my rt eye.Asked if this has anyhting to do with my ME/CFS.Fibro or even side effect from medication i am on.Well i only no within 2 hrs from going to the drs i was sat in the emergency eye clinic.
Had various tests then and there ,and they told me then they were sending me for MRI AT THIS HOSP,and some Neuro tests but they would have to be done at the university hosp in Norwich.
I asked why they explained that one cause and my symptoms fit that is MS.Omg i sank and then i thought as you do on i wonder if in 2006 maybe i was miss diagnosed.but know was the answer this can be the first stage and the test they do look at the optic nerve in the eye.
Anyways it is now January and i still have no sight i went last week and they told me im going blind ....going feels like ive already gone!they now want me to under take a Flueroscide Angiograph...English ..die injected into hand series of xrays taken of the eye.Then i have to have another MRI scan but this time more indepth!then once had these have opd to go see them.My eye has no sight it is not reacting properly to most of the tests but WHY?they dont know have no clue.So i am battling on with this ontop of my ME/CFs and Fibromyaligia im getting there staying strong and not trying to think well what if?
Try not to think of it i hadnt noticed my sight loss before i went to doctors and some times forget now as my left eye is doing all the work except im told it is feeling the strain.It's the headaches and eye pain that drags you down daily .I should be used to headaches by now suffering fromCFS/ME.Well my joints aare my joints go to physio at the moment once aweek as my knee is not good since my last fall,and yep been told cant have knee op even though i have a knee of a 70 yr old!!!!(nice guy) Why ?because the knee will die before i do ......they must be psychic...lol..in ohter words im too young and they will only do one knee replacement .My argument surely i want my quality of life now not later on in life!
So the bqatlle goes on and i wish all my readers and followers some new some old a very Happy ,HEALTHY ,New Year!May long it continue.This year as i do make cards and crafts to raise money for Alzheimers by the way thanks for all donations greatly received but im now doing it for ME/CFS and Fibro!...Keep me out of mischeif when im able anyway.Well ive gotta go as had to cut my time on the old computer due to my eye.
Take care Love n hugs
Take one day at atime and cross each bridge when you come to it!
Judex

Friday, 14 May 2010

ME Awareness WEEK....Why im a wee late

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.

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 caf├ęs 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

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
judex