tag:blogger.com,1999:blog-15766651727322097672024-03-14T00:19:57.881-07:00Living With ME / CFSjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-1576665172732209767.post-15400896292140343372011-01-15T22:31:00.000-08:002011-01-15T22:56:43.416-08:00News 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.<br />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.<br />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.<br />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?<br />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!<br />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.<br />Take care Love n hugs<br />Take one day at atime and cross each bridge when you come to it!<br />Judexjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com7tag:blogger.com,1999:blog-1576665172732209767.post-84679364041970230602010-05-14T19:47:00.000-07:002010-05-14T19:57:50.407-07:00ME Awareness WEEK....Why im a wee lateI 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.<br />hugs judexx<br /><a href="http://memyselfandcfsme.blogspot.com/2010/05/happy-mecfs-awareness-day.html">Happy ME/CFS awareness day!!!!</a><br />I have copy & pasted this post from <a href="http://dreamsatstake.blogspot.com/">Laurel's blog</a> 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:<br />"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 <a href="http://www.25megroup.org/">25% of ME/CFS patients</a> 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 href="http://www.sciencemag.org/cgi/content/abstract/sci;326/5952/585"> a study</a> 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:<a href="http://www.aboutmecfs.org/">Phoenix Rising: About ME/CFS</a><a href="http://www.wpinstitute.org/">Whittemore Peterson Institute </a><a href="http://www.cfids.org/">The CFIDS Association of America</a>Some 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, <a href="http://apps.facebook.com/causes/petitions/409?m=dbf75e69">sign petitions</a>, watch online webinars, and/or <a href="http://www.capwiz.com/cfids/home/">write</a> to Congress to request more funding and awareness.5. Take a moment to <a href="http://capwiz.com/cfids/issues/alert/?alertid=15016826&type=AN">ask the Secretary of Health</a> to implement the recommendations of the <a href="http://www.hhs.gov/advcomcfs/">CFS Advisory Committee.</a> 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 <a href="http://blueribboncampaignforme.org/Mission_DUPS.html">blue ribbon</a> to show your support. If you are on Facebook, consider putting a<a href="http://twibbon.com/cause/PANDORA-Advocate-Extraordina/facebook"> twibbon </a>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 <a href="http://www.wpinstitute.org/">Whittemore Peterson Institute</a>, <a href="http://www.cfids.org/">The CFIDS Association of America</a>, or <a href="http://www.pandoranet.info/">PANDORA</a>. If you are unable to donate, you can instead <a href="http://capwiz.com/cfids/home/">write</a> to your local senators and representatives and ask that they allocate more funds toward ME/CFS research.judehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com1tag:blogger.com,1999:blog-1576665172732209767.post-77051246066321832912010-05-14T19:37:00.000-07:002010-05-14T19:38:04.445-07:00ME Awareness WEEkWhy is it important to raise awareness about Myalgic Encephalomyelitis (ME)? by Nicola Karen Reiss<br /><br />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 (<a href="http://www.meactionuk.org.uk/magical-medicine.pdf" rel="nofollow" target="_blank">http://www.meactionuk.org.uk/magical-medicine.pdf</a>) 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: <a href="http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf" rel="nofollow" target="_blank">http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf</a>)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) <a href="http://www.nightingale.ca/index.php?target=home" rel="nofollow" target="_blank">http://www.nightingale.ca/index.php?target=home</a>The Hummingbirds’ Foundation for M.E. <a href="http://www.hfme.org/" rel="nofollow" target="_blank">http://www.hfme.org/</a>ME Action UK<a href="http://www.meactionuk.org.uk/" rel="nofollow" target="_blank">http://www.meactionuk.org.uk/</a>Invest in ME<a href="http://www.investinme.org/index.htm" rel="nofollow" target="_blank">http://www.investinme.org/index.htm</a>Whittemore Peterson Institute for Neuro-Immune Disease<a href="http://www.wpinstitute.org/" rel="nofollow" target="_blank">http://www.wpinstitute.org/</a>National Alliance for Myalgic Encephalomyelitis<a href="http://www.name-us.org/" rel="nofollow" target="_blank">http://www.name-us.org/</a>The Young ME Sufferers Trust <a href="http://www.tymestrust.org/" rel="nofollow" target="_blank">http://www.tymestrust.org/</a>The Grace Charity for M.E.<a href="http://www.thegracecharityforme.org/index.asp" rel="nofollow" target="_blank">http://www.thegracecharityforme.org/index.asp</a>Please repost freely (without changes) and pass this message on to friends and family!judehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com0tag:blogger.com,1999:blog-1576665172732209767.post-28181981476903709652010-05-08T22:49:00.000-07:002010-05-08T22:57:42.748-07:00It's been a while...ME/CFS Awareness Week 9-15th May<div align="center">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.</div><div align="center">I promise i will be back soon with an update as all sufferes know you just take a day at a time.</div><div align="center">Hope your all pacing well</div><div align="center">love n hugs judex</div>judehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com1tag:blogger.com,1999:blog-1576665172732209767.post-35526516684865607892010-02-04T08:08:00.000-08:002010-02-04T08:17:27.440-08:00Hello 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.<br />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.<br />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.<br />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 .<br />hope your all keeping well as can be expected and promise to pop by more often and update you all<br />love n hugs judexjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com5tag:blogger.com,1999:blog-1576665172732209767.post-76594000675007619532009-09-10T21:56:00.001-07:002009-09-10T21:56:57.648-07:00Brain fog againJust checked my post blow me i had already posted about papworth ...loljudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com1tag:blogger.com,1999:blog-1576665172732209767.post-76487577244415154872009-09-10T21:46:00.000-07:002009-09-10T21:56:09.397-07:00Pain pian and more PAINThis 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 .<br />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 .<br />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.<br />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 .<br />Anyway do hope you all have good painfree weekend<br />Take care gentle hugs<br />judexjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com1tag:blogger.com,1999:blog-1576665172732209767.post-31774346218547610952009-09-08T00:30:00.000-07:002009-09-08T00:58:48.664-07:00Im 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!!!!!<br />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.<br />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.<br />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.<br />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.<br />So we shall have to wait .<br />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 .<br />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,<br />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!!!!!<br />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.<br />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.<br />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.<br />Gentle hugs<br />judexjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com2tag:blogger.com,1999:blog-1576665172732209767.post-81943091775441874562009-08-19T21:17:00.000-07:002009-08-19T22:00:00.553-07:00So sorryIt 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.<br />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 .<br />so back to my sleep regime this is what they want me to start from now on; This is daily....<br /><br />go to bed at 9.30pm wake at 7pm<br /><br />go back to bed at 9am until 2pm<br /><br />go back to bed at 4.30pm until 6pm<br /><br />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.<br />this is the strange thing im wide awake but so fatigiued and exhausted why cant i sleep i ask myself .<br />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.<br />i was reading ablog this morning <a href="http://meandmeagainsttheworld.blogspot.com/">http://meandmeagainsttheworld.blogspot.com/</a> 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.<br />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.<br />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.<br />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!<br />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<br /> 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.<br />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<br />"Treat people how you would want to be treated "<br />take care love n hugs judexxxjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com2tag:blogger.com,1999:blog-1576665172732209767.post-52470431779781355452009-06-08T20:15:00.000-07:002009-06-08T20:22:51.280-07:00MorningSorry 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..<br />Soon i have a fellow suffer going to tell you how she was diagnosed with Cfs &Me her story will be coming soon<br />Hope you all have restful painfree day.<br />gentle hugs judexjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com2tag:blogger.com,1999:blog-1576665172732209767.post-65668280086675493052009-05-28T21:55:00.000-07:002009-05-28T22:05:47.662-07:00Morning allWell this certainly been an upside down week for me ,but i always find it harder to cope when it's holidays .Roll on tuesday when normality sets in and pacing begins again.It is so hard to pace myself like i normaly do when the girls are at home and sometimes you just cant do it.<br />So i know for a fact im in for some catch up and usually it will start the weekend before they go back,although must admit havent over done it so no boom to bust as they say at the Me clinic.<br />I have asked a few people who i have found out have this illness and suffer like we all do to be a guest on the blog to see and read their stories .There's never one sufferer the same ,but thought this would also be very interesting to get a insight into how they where,were they disgnosed and what may have caused it. How this has changed their lives<br />Which i think will be an interesting read for all of us.<br />Well i shalle hopefully be back soon take care ,have stress & pain free day and don't over pace.<br />love n hugs judexjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com1tag:blogger.com,1999:blog-1576665172732209767.post-6985809455393099032009-05-14T20:12:00.000-07:002009-05-14T21:02:23.585-07:00Morning...where has my life goneWell it has been a few weeks since i posted im sorry for that but thats where ME/CFS & Fibromyalgia take over your life.Thats one thing i do miss my life!Where has my life gone?the "Normality of your everyday life"The getting up in the mornings with out feeling tired ,without having headaches ,forgetting things ,being able to get out of bed in my case these past few weeks has been more than a struggle believe you me!Then the guilt returns as you havent the energy to do anything,not even the simpliest of tasks like getting dressed.To me that would be like doing the london marathon ,thats how it has been since i last posted.<br />Which brings me onto a more hurtful i surpose topic of living with ME/Fibro.That is when i was first diagnosed .My husband needed someone to take the children to school at this point they were only small.Something hit us in the face.The fact that who you thought where friends turned out not to be !Not everyone but most of my friends i met through taking the girls to school and the pfsa just didnt bother.<br />The hardest part came when the girls used to come home from school saying"mum so and so asked me why doesnt your mum bring you to school anymore ,so i explained you where not well and had ME.Her friend replied my mum says your mum is just bloody lazy and your mum doesnt even get dressed just slobs about!!Parents just talked in front of their children not thinking being ignorant as usual.But This just showed me through ignorance what people thought.I surpose as yes before when i was healthy or had more energy about 6 of us used to go to the gym every morning on monday wed,&friday straight after dropping the children off at school.It Soon became apparent that these where no longer so called friends.<br />Not one of those so called friends ever ask me or came and visit me to see for them selves how or what i was like,just presumed i was swinging the lead as they say.If only i was ,little did they know or for that matter want to find out if i was .<br />To this day they don't come near and have no contact,but living in a village people talk and soon word got out and it was the girls i felt for some of the heartless things said by parents infront of their children and back to me through their children to my girls.It was the girls i felt for but they stood up and told them boy did they tell them.But it shouldnt have to be like this more awareness of this terrible decapitating illness should be made aware to the public.Hopefully now as time goes by, millions of us being diagnosed who suffer from this illness awareness & knowledge will start to be discussed more .I have noticed more and more articles in papers and tv programmes coming out ,but this needs to grow and become well like the awareness towards "Cancer & Aids"know body doubts you when you say you have one of those illnesses as they know what it's all about.Well it should be the same for all us sufferes and carers.<br />I came to the conclusion it still is ignorance on there part and not enough awareness in the public eye as there should be and believe you me that should be with some of the Drs i have come across who totaly dont believe in such an illness.So how can the public be educated if the proffesional people arent or dont believe in such an illness not being made aware of this disabilitating illness.Thats why so many sufferes are not being diagnosed early enough with this iillness.But having to go back and forth before the gp takes you serious.<br />Thank goodness that my doctor wasnt one of those people and was a believer and educator in this field i dont realise how lucky i was having a GP like him thanks to DrHicks i was treated early after everything that could have been done was .He said to me i need to get these tests done to rule out all possiblities but have fairly good idea what you have but want to be 100%.I remember going back with Andy to get the results.He sat in his chair said im glad to say your as fit as a fiddle and all tests have come back normal ,There's me thinking why do i feel like ive been run over by a bus!.So he said as he was laughing at my comment my thoughts where right you have ME,and from that day on he never stopped helping me the refferals to the ME Clinic,Sleep Clinic in Papworth hospital,the help,he got me a social worker.Told Andy we shall have things sorted so you will be able to return to work not worrying about your wifes safety during the day.<br />I am still a strong believer of you have to be educated made aware more of this illness before you can educate others.<br />Well i hope you all have a good weekend pain free even if only for a while.I have added some articles top rt on sidebar that maybe of interest to you,or your carers<br />judexjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com0tag:blogger.com,1999:blog-1576665172732209767.post-41535667607255908892009-04-29T21:48:00.000-07:002009-05-03T22:28:29.982-07:00<span class="blsp-spelling-error" id="SPELLING_ERROR_0">There</span> are so many descriptions of this disease from patient to patient.These effect each individual differently.Here i explain my symptoms;<br /><br /><div align="center">Easily Confused.</div><div align="center">Brain fog...forgetfulness.</div><div align="center">Attention Deficit.</div><div align="center">Muscle Weakness.</div><div align="center">Loss of balance ....Leading to falls.</div><div align="center">Clumsiness.</div><div align="center">Hypersenseitivity Light & Sound.</div><div align="center">Dizziness.</div><div align="center">Numbness.</div><div align="center">Nausea.</div><div align="center">Shooting Pains.</div><div align="center">Recacurrent sore Throat.</div><div align="center">Hypersensitivities ...(Such as increased allergies to Medications)</div><div align="center">Frequent Waking.</div><div align="center">Limb Moving Disorder (Jerking/Twitching during sleep)</div><div align="center">Generalized muscle pain</div><div align="center">IBS ..(irritable bowel syndrome)</div><div align="center">Problems with Blood Pressure.</div><div align="center">Headaches.</div><div align="center">Diarrohea/Constipation.</div><div align="center">Functions in Controlling Body Temperature .. Fluctuates between Hot & Cold.</div><div align="center">Worsening of Symptoms Under Increased Stress.</div><div align="center">Anxiety</div><div align="center">Loss Appetite.</div><div align="center">Depression.</div><div align="justify">There are so many symptoms these are just a few i have mentioned above. I have had the pleasure of experiencing,can't stress that each individual suffering from ME will experience the same ,less or more than i have .</div><div align="justify">What i have to stress that "Normal "healthy People take for granted in life such everyday tasks as taking rubbish out doing the dishes.This to me is like walking mount eversest!sounds silly doesnt it ,well it would if you dont suffer this illness ,but me i feel an overwhelming feeling to lie down and rest basically your knackered!</div><div align="justify">I can only describe it like having proper flu permanently.Flu like symptoms ,following minimal physical or mental exertion.</div><div align="justify">Exhaustion never goes away doesn't matter how much you rest.The simpilist things in life we all take for granted can result in servere exhaustion, this might not show straight away few mins,hours or even the next day.I know myself that if i have hospital ,or drs opd,ME Clinic to go to ,it wont effect me then although i feel knackered all the time ,it effects me the next day im just good for nothing.I cant stress enough people experience this in different ways these are my examples.</div><div align="justify">ME ...is often described as an on going "Hangover"that doesnt go away but varies in intensity from day to day hour to hour.I always describe mine as "serve flu"The real flu not man flu...lol,not even a cold.The flu where every part of the body ,joint aches ,along with the feeling of your nerve endings are raw example of this is when you cant find your body a comfortable place to rest.You cant stand anyone to touch you ,even have your children sit on your knee as your nerves are raw.Thats the only way i describe myself.Of course with the girls wanting cuddle off mum who can't stand them near her,takes alot of explaining,and the biggest thing i feel is "GUILT"for not being able to do this to be a mum.I will go more into guilt later on this was just an example of the things i have and am experiencing over past few years since diagnosis .Hopefully many of you will relate to this and leave comments.</div><div align="center">The Main Cause of my ME</div><div align="justify">In 2006 i had to go into hospital for abdominal surgey ,little did i know my life would never be the same again,and it would change my life completely.After surgery i came home and think i slept for a month i can't recall much,people would come and visit me id be chatting in middle conversation and fall asleep id wake up some minutes later and carry on talking.Hubby and girls found this funny in away.This kept happening id start to eat my meal fall asleep in it,drink drop it,the cups and glasses ive dropped whilst holding and falling alseep untrue.The seriousness started to dawn on us all 5 weeks had past they could no longer blame my situation on the Anasesthetic or infection i had post off.So we discussed this and went to Gp ,this is when it all really started ,tests for thyroid,bloods for various other ailments that have similar side effects .</div><div align="justify">Eventually when we went back to see the GP my husband told him nothing had changed .The Doctor was lovely he said he didnt think it would.He continued to listen to my husband as he had told the doctor that he is having to take another month off work to look after me as he was worried about the safety side.As one day Andy had to pop into work for a meeting i put a pan on to boil went back in lounge bingo i was out for the count until the smoke alarm started.We or Should i say i have had a few near misses with the fire alarms !!!Andy had already been off 3months taken all his annual leave that he could and now on unpaid leave.If he had appointments hed make sure someone was here to sit with me,as couldnt leave me alone.</div><div align="justify">What he was worried about hes out the house form 7.30 until 5.30-6pm and his main priority was the safety of me and his concern for my children,then they were small.</div><div align="justify">This is where the gp came to are help he was fantastic arranged for social worker to pop in that afternoon to help him so he could go back to work as no money was coming in to pay bills or keep roof over our heads.</div><div align="justify">This is where i had problems big problems Guilt,Depression go together.I was guilty that i couldnt look after myfamily ,walk my children to school i had done in the past the thought of it scared me ,to me something simple like that felt like walking mount eversest or similar.Of course depression came to visit as id get depressed that i couldnt enjoy being a mother to my children when i should be.Instead sleeping 21hrs aday in horiffic joint pain ,having the heating on when the temp was 82 summer ,as couldnt control my temperature.All these things build up and eventually get you down.</div><div align="justify">It was then explained to me that i had gotten ME one of 2 ways either the trauma of having the operation or the post op infection that occurred 2 days after discharge from hospital.There are many other ways that people can unfortunately be diagnosed with this illness but today my Gp has put this down to one of those or even both.</div><div align="justify">OTHERS ARE ....</div><div align="justify">Trauma,</div><div align="justify">post operative infection </div><div align="justify">infection after travelling abroad</div><div align="justify">allergic reaction </div><div align="justify">Stress</div><div align="justify">these are just afew of many .</div><div align="justify">My days as i recall very similar now the only difference my children have grown up the last 3 years living with a mum who suffers with Me .They are the kindest caring children i could ever wish to have ,there understanding now is so much better they are older but still hard sometimes to accept .But they care for me ,love me and will do anything to help me .</div><div align="justify">My next post will be about the help i received from the Gp and the stigma that goes with ME from others both adults and children towards me and my family.</div><div align="justify"></div><div align="justify"></div><div align="justify"></div>judehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com3tag:blogger.com,1999:blog-1576665172732209767.post-26456011669140931212009-04-29T20:58:00.000-07:002009-04-29T21:44:04.638-07:00ME/<span class="blsp-spelling-error" id="SPELLING_ERROR_0">CFS</span> if you are unfamiliar with the condition and its history. ME is the common name for <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Myalgic</span> Encephalopathy, sometimes also known as <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Myalgic</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Encephalomyelitis</span>. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">CFS</span> is the common name for Chronic Fatigue Syndrome.<br />Despite the fact that the Department of Health now accepts ME/<span class="blsp-spelling-error" id="SPELLING_ERROR_5">CFS</span> as a genuine medical condition, diagnosis can still pose a problem because ME/<span class="blsp-spelling-error" id="SPELLING_ERROR_6">CFS</span> symptoms are similar to those present in a number of other medical conditions.<br />Also alot depends on your GP,i was fortunate that he was great ,but i know some <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Gp's</span> just don't <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">recognise this as an illness.My GP i have to say hats off to him ,he was sending me for every test under the sun ,but give him his due said im sure i know what it is but want to rule out anything else first!All my tests came back normal , the result was diagnosed as ME,that was in Feb 2006</span><br /><span class="blsp-spelling-corrected">Before i start let me just say that ME effects everyone differently There are so many descriptionsof the disease from patient to patient,effects each individual differently.</span>judehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com0tag:blogger.com,1999:blog-1576665172732209767.post-50669165736378880082009-04-29T04:22:00.000-07:002009-04-29T05:05:16.185-07:00Welcome To My BlogWelcome to my blog here i will share with you my thoughts,feelings,experience & information about ME/CFS and also Fibromyalgia hopefully will be of some help to you .Eventually I 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 had to 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.thanks judexjudehttp://www.blogger.com/profile/15915860473376913535noreply@blogger.com6