Wednesday, 12 May 2010

Hospital Appointment

I went to see the head ache clinic Nurse for the first time today. She was very nice, chatty & friendly. She was happy with what I have been doing so far e.g I don't drink tea or coffe, smoke, drink alcohol I'm trying ti eat healthy & I only really drink water. The only thing I need to remember is to keep a little diary & drink more water than I am.
I am back again end September to see how I am getting on. I am now taking 50mg of Amitriptyline & she said she may put me up to 75mg depending how I am in Sept. Its a month by month thing she said.
Ironically I have had the best day I have had in weeks (other than the constant pains!!)
I have been putting links all over facebook & emailed everyone to try & help with awareness.
Tomorrow I am going to my friends house for a massage appointment which I hope will help with my neck & back. I will also hear & get all the info re my fundraising fingers crossed I should be able to order some tickets tomorrow. I am just not sure how many to buy!!
Thank you to everyone who wished me luck with the appointment.

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.

Phoenix Rising: About ME/CFS
Whittemore Peterson Institute

The CFIDS Association of America

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, 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/CFS awareness day!

My hospital appointment has been moved forwards so I will be back to post later!

Monday, 10 May 2010

Lets Blog,......dooby , dooby ,,,,lets blog!!

Actually it should be lets get warm. I am totally frozen this morning, feel rubbish & on my period (which was a week late again)

Today I am going to give you 10 symptoms I have other than "feeling tired" which is the only one anyone ever knows!
  1. Severe pains in my neck which can cause me to pass out, just from holding my arms up at shoulder height.
  2. Bruises & not always small ones ALL over my legs. I look like I've been beaten up!
  3. Pains - in my elbows, knees, ankles, down my legs, fingers, wrists, back - all very randomly or if I stay in same position too long or walk too far etc... & we're not talking discomfort I'm talking PAINS!
  4. Loss of voice &/or sore throat
  5. Brain - foggy head, lack of concentration. Total memory erased moments. Can't even form a sentence or think what my name is....& I'm not is VERY scary.
  6. Not being able to move when I want to eg - when you think move your leg you dont actually have to think "move my leg" your brain automatically sends the signal. I have to actually think - move legs now please, please move now, oh come on this is just getting stupid, MOVE! - again can be quite scary, it feels like my muscles are just wasting away.
  7. Really bad muscle twitches - my legs fly off in all sorts of directions when they feel like it!!
  8. Depression -feeling  pissed off at being ill, the pains, the disturbed sleep, the nightmares, feeling of being alone, no one really understanding, feeling like it would be easier on everyone if you weren't here anymore, generally feeling so fed up I could quite happily jump under a bus - if  I could manage to walk to somewhere with a bus & manage to jump that is!! 
  9. Feeling cold even when everyone else is in a T-shirt - I have a vest, long sleeved top & a cardy or jumper over the top & will feel just right.
  10. FEAR - you may wonder how fear can be a symptom? Well due to all the other symptoms Fear of many things is a huge symptom for me & now more than ever. Fear of depending on happy pills & pain pills etc, Fear of going out - making plans & then not being able to do them. Fear of being ill like Jan 09 with the pharyngitis - ending up bed ridden for months, in a wheel chair or hospitalised. You may think that sounds stupid but it could very easily happen & does to many people.
 There are so many other random & small symptoms , the list is pretty much endless, but all the small things added together along with the main CFS/ME symptoms are what make CFS/ME so debilitating. You have no quality of life & when you do have a few good minutes, hours or days you treasure them.

Please take a minute to imagine how your day would go if you had all these symptoms. Even the silly little things like brushing my teeth can make me pass out when my neck is bad or be so tiring to do I need to go back to bed. That's if I've managed to put toothpaste on the brush & not soap!!

CFS/ME awareness week - Please be aware!!

Friday, 7 May 2010

Blogging for CFS/ME week....

.....well over the weekend I thought I had food poisoning & was quite ill with my belly. Poor hubby had to hold me up on the toilet while I was in & out of consciousness!! I've now found out my mum has been badly too, so don't think mine was food poisoning.

Not been sleeping very well again. Hubby has been full of cold & has taken snoring to a hole new level!! Last night I tried my new dose of Amitriptyline, but today I just want to sleep. 
I found it really difficult to get out of bed this morning. I just couldn't wake up. When I was pretty much awake & then couldn't get my body to move. Its like I think "Move" but my body isn't getting the messages from my brain.

My head is foggy & I don't quite have a headache but my head feels crap & all I want to do is go back to sleep!
Crappy day :-(

Saturday, 1 May 2010

Blogging for CFS/ME ...awareness in May

Well its May1st & the beginning of blogging for CFS/ME awareness.
Today I have received some prizes for my raffle from channel FIVE to raise money & awareness. I am just waiting to hear from AFME to make sure everything is ok for me to sort the tickets out. I can't wait!
I've also received my first stock order today for when I relaunch my online shop.
Onto the ME!
Slept better last night because hubby slept on the sofa because he has man flu & would be snoring all night!!
Had crap dreams most of the nigth about being in pain & my legs not working. When I woke up my legs were hurting & numb....probably why I was dreaming the same thing!
Made a couple of new friends through Facebook CFS/ME pages. I would recommend joining them as I now feel much less alone having people talking about their ME everyday.
Its that time of day for me when I get really tired & need a power 2 hour (sleep) Hubby is snoozing now on sofa with the occasional snorty snore!!
Got ton the scales yesterday & found I've put weight on. Got a really bloated belly at the moment, think I need to sot my eating out again. Not heard from DLA yet but hoping to soon as they will have had & read my GP report by now. Gonna go now because my fingers are starting to hurt :-(
Hope everyone has a good start to the month...maybe not weather wise though hey!!
See ya x