Me, Myself and CFS/ME

Being encouraged to enjoy myself & share this with others

2012-02-09T15:36:00.000Z

Wow it has been a long time!

I won't go into what's being going on as it will make a very long read lol!

This post is actually for a specific reason. Its about encouraging CFS/ME sufferers.....mainly myself!... to get out, socialise, have a little fun & not be scared to share this with others.

I know all too well this is not an easy task. Believe me I know. If I've not got headache, I'm stuck in bed. If I'm not stuck in bed I'm wrapped up on the sofa feeling like I have been run over by a bus. However I have found if I apply a little time for myself doing something I enjoy or find fun I often find my symptoms are less & my recovery time from said activity is a lot quicker.

I have not found this out by chance. A friend of mine introduced me to Reverse Therapy. I'm not going to go into details about it I'll leave that up to you but I will say this "Reverse Therapy is NOT about mind over matter." (as many people including some professionals believe the key to CFS/ME recovery is.)
I will also say it has NOT cured me....(yet!!) ..... but I have found it very beneficial.
http://www.reverse-therapy.com/

If you have read my other posts you will know about my visits from the benefits office....twice in one year!!
That situation is really the key to this post.
I believe it was a "friend" who rang on both counts. I also believe this "friend" was just so ill informed of CFS/ME they didn't understand that wearing jeans, driving a car, walking the dog & going to Salsa, the first time round & crafting the second time round we're actually not benefit fraud!!!
On both visits the benefits people we're very friendly & said they encourage hobbies & some activities as these are a crucial part of the healing process with CFS/ME.

Even though nothing came of the visits as I was doing nothing wrong I have felt imprisoned, scared to leave the house, feeling like I am being watched & unable to do anything I might enjoy. I've been scared to share times of enjoyment with friends & family for fear of a "friend" mis-understanding this & making another phone call.

I have learnt from Reverse Therapy that addressing things like my fears above help alleviate symptoms. So I'm hoping this post & later a post on Facebook will help put aside some of my fear & educate my friends & family so there won't be a repeat situation! I want to be able to share with my friends & family the things I am doing not have to watch every word I say or type.

A friend of mine made a phone call to ME North East & ESA Benefits recently, who both encourage activities, social events, fun & enjoyment to aid CFS/ME recovery. It is because of this encouragement I am doing this post & intend on doing some things this year I have not tried before, things I enjoy & find fun, also I intend to share these happy times with my friends & family.
I truly believe if I don't try to start living a little how I want & without fear I have no hope of ever having any type of recovery.

Here's to having the courage from the encouragement of others to live a life of joy, fulfilment & without fear.

Helen Laurence

Come & join the Monk E !!!!!!!!

2011-05-27T16:41:00.000+01:00

CFS Monk E is an organisation dedicated to campaigning for and helping CFS / ME sufferers in North Yorkshire

I am part of CFS Monk E. I designed & illustrated Monk E. Please join us on

Facebook

Twitter

Short post from me today.....

2011-05-11T10:05:00.000+01:00

.....well its ME awareness day tomorrow & today it is all to real for me...not having a good day :0(

After doing a bit too much yesterday to do with our article going in the Press I have crashed. Was in bed by 7:45 last night. Feel ruddy awful today. Got out of bed this morning for the loo, got to the door (at the end of my bed) had a really bad head rush & then my legs paralysed.....never happened before it was freaky. Hubby had to get out of bed to support me so I could try move!......also not good when you're busting for a pee LOL !!!

Lets hope some rest today sorts me out.....also I'm stopping the tablets again because I've decided the side effects out way the good they do....back to the docs for alternatives!!

Hope you all are feeling as well as possible xx

CFS/ME awarness week Please help me raise awareness ~ Post #2

2011-05-09T21:59:00.002+01:00

As I have just recently joined twitter & have tweeted to JLC to ask to help raise awareness I thought I'd re share with you the pic of my knitted JLC with the real one!!!

CFS/ME is a devastating & debilitating invisible illness.

I have been suffering now for ....oh many years, too many to count!

There are 250,000 people in the UK alone with CFS/ME

It causes among other symptoms:

chronic fatigue

muscle, joint & nerve pain

concentration problems ~ brain fog

disturbed sleep & sleep patterns

Due to government 'cut backs' CFS/ME services all over Britain are being stopped.

Help us campaign for York by following CFS / ME York on Face book & twitter

simply add the badge below to your blog for at least this week.

You can link it to Action For ME

http://www.afme.org.uk/

My ME blog

http://memyselfandcfsme.blogspot.com/

or our Face book page

https://www.facebook.com/pages/CFS-ME-York/154657551264062

It CFS/ME awareness week!

2011-05-09T12:17:00.000+01:00

Hello folks :0)

Yep it is that time of year again!!

CFS/ME/FM awareness week

CFS/ME/FM awareness DAY 12th May

On Saturday I did a Craft open day to help raise funds & awareness. Wasn't a very good turnout but i still managed to raise £32.00 so not a bad day :0)

I am at this moment not feeling all there (brain fog!) but thought I would make an effort to at least post something.

I am back on amitriptyline & I think they are starting to give me the weirdo side effects. I can not decided which is worse the symptoms WITH the tablets or the symptoms WITHOUT!!!

Ok I really can't think now so thats it from me today!

CFS/ME awareness day/week is coming up...help support!

2011-05-03T15:22:00.002+01:00

you can help support by donating money to

Action for ME

I'm back again!!!!

2011-03-13T20:44:00.000Z

Hi, no you're not imagining it I am here again!

Had a rubbish weekend health wise. Spent all of Saturday with a migraine & most of this afternoon too. On the plus side my throat seems to be better so hopefully this dip I have been having is finally coming to an end??!!

I'm feeling a bit down tonight. Had one of those hubby doesn't understand moments earlier & I got a bit upset.
Ok...ok so I have a bit of a belly at the moment, but as I said to him I would love to do some exercise & keep fit but I can't. If I did some exercise I would then need to allow time to recover & rest from doing it as I learnt in the group last year. If I do that then I won't be able to do something else .g make tea.
I want to be able to do everything but as I have just proved to myself over the last few weeks. Trying to do everything lands me in bed & really ill for 3 weeks & counting!!!

I really need to get back to what we did in the group last year scoring myself, resting, relaxation time, structured days & pacing. I know it works but it is sooo hard to keep at it.

On the scoring system 0 being REALLY bad & 10 being really good I have been a 3 this morning & a 1-2 this afternoon which equals not a great day & fluctuating between 3 numbers in one day.

Note to self -GET STRICT & GET YOURSELF BETTER!!!

its been a while!!

2011-03-11T22:46:00.000Z

Hi there! Yep I am still here & yes it has been a while!! Too long in fact.

Thank you to all the lovely people who have read my blog & emailed me. I apologise that I do not keep in touch very well, but it is always great to hear from you all & I try to reply & keep in touch as best as I can.

I am struggling at the moment with my energy levels & my throat is coming up & down depending how tired I am. Over the past 3 weeks I have spent a great deal of time stuck in bed or on the sofa.

Everything seemed to come to a head after my last appointment at Leeds. We went for a follow up appointment after our first go at IVF which failed :-(
I needed to release the emotions by cleaning etc & did far too much, followed by more too much etc & now I am paying the price for the energy & the emotional energy the IVF took plus the energy & I have stupidly spent trying to ignore I have ME.....yes I I'm afraid I have fallen back into the 'I don't have ME, if I just do this I'll be fine!!' ....next day stuck in bed feeling as awful as possible!!

Sleep has been a problem too but is getting better again. Trying not to go back onto the tablets but now & then I have a couple just so I get at least one nights sleep!!

Ok well I've rambled enough for tonight so I'll go see how my ebay is doing & then try going to bed.
Night night x

Update...

2010-11-18T10:04:00.001Z

...just a quick update. I have had a busy few days & trying to recover, but now I think I have a bug too :0(
Hubby & I will be starting IVF treatment so been going back & forth to Leeds for tests etc before it starts.
I will eventually get back to updating this blog more & apologise for lack of presence!!

Don't jump off the roof dad....

2010-10-10T11:35:00.001+01:00

.......you'll make a hole in the yard!
If you must end it all dad, then why don't you give us a break.
You can go down to the park dad & then you can jump in the lake!

....Don't ask!! One of my mum's oldie but goodie poems that my nieces now sing!!

Yes I know I am a useless ME blogger....must make more time to blog - I have been keeping a kinda diary though so hard to do both!

I will at some point come back with a full update but until then I'll leave you with

Don't jump off the roof dad.......!!!!!

Helloooooooooooo!!!! I am still here!!!!!

2010-08-13T18:06:00.000+01:00

Hello! Yes I am still here. I know I am a very bad blogger sometimes especially when it comes to this blog. I keep telling myself I will blog or even keep a diary but I never seem to keep to it for more than a week (if that lol!)

First what do you think to my fabby background??? I made it myself!! Its my cutie pie Roger to make us all smile!

Ok lets get down to business! - Update.... well its been a weird few weeks. I have been busy with my crafts & bits, well when I say busy I mean I have a lot of things to do but they are actually spread out over days or weeks. I am either sleeping or resting in between. . . Hang on, that makes it sound like I'm being a good girl & resting at the right time!! Nope not me I do too much & then rest instead of resting & then doing a little bit....whoops!!

Hubby is now self employed so only round the corner working. Its been great because he's been helping me out a lot more (he's cooking my tea as I type!!) I've started going to another group for CFS/ME. Some of you may remember I went to a group in Leeds when I was first diagnosed in 2007.

My main blogging from now (if I stick to it lol!) is going to be about my group, how its helping me & also progress with the group & the forever living Aloe Vera I am taking every morning.

I will need to catch you up first though because I started the aloe a month ago & I've just been to session 3 of the group this morning.

I will start with the aloe. Back in June, 26th to be precise it was my mum & dad's ruby anniversary/60th birthday party & I went round selling my raffle tickets. Whilst doing the rounds I stopped to talk to a few people & got talking to a family friend called Chris. We'd not seen her in years. She use to come & do Studio Dee parties!! ...anyways Chris asked me what the raffle tickets were for & told her it was because I have ME blah blah blah....she said she thought she might be able to help me with & arranged to come see me on 1st July.

We had a lovely long chat & catch up & she told me all about forever living & their products & how Kevin (the boss man) was bedridden with ME for 7 years & swears by the aloe vera juice. Chris asked me if I'd give it a go & if I didn't feel any better in 3 months they would give me my money back. You know me I'll give anything a go!!! Some of you may remember the really strict diet I did last year, which worked to a point but caused more problems than it solved so I had to give it up.

Well, I've been taking the aloe now for just over a month & I can honestly say it has calmed my belly down making it easier for me to eat things (without having to do a diet) & - shut your eyes, ears, brain if you don't like too much information!!!! ........it has cleared up my constant thrush & making sex more enjoyable!!!! Lets just say the baby making is most definitely back on!!!

Chris keeps in contact with me & has given me a few more bits to try. The aloe jelly (which can be used for thrush to soothe the sore/itching) is fantastic for nettle rash. I got really bad nettle stings all over my right knee & up my leg after accidentally leaning on one whilst sorting my rabbits out. The aloe jelly was instantly soothing & stopped the stinging. I did have to re apply a couple of times but the following day there was nothing to see.

I am going to keep on with the aloe every day because even though it tastes a bit rank it is worth it. We think it will take at least a year before I notice any improvement in my ME symptoms. So I'll keep you posted with that.

I think I will stop here as its getting a bit lengthy this post & I should be good & have a rest from the 'puter.
Back soon to catch you up on the group.

Siging off - Helen x

Cold & tired ....yawn...brrrr!

2010-07-12T11:45:00.000+01:00

Well I don't know about you but I am bloody cold today. My body cannot cope with all this change in temperature!! ......anyways apologies for lack of blogging-ness. I have been a busy bee & when I'm not busy I'm too tired to do anything but curl up & snooze!
I've been suffering with really bad heads again all last week & really bad pains in my feet & ankles. Could hardly walk over the weekend.

I feel totally shattered today & would much rather be snuggled up in bed, but we are off to view a house today & its too noisey next door for me to rest in bed!

Anyone know much about forever living products? I am trying their aloe vera juice. I have it first thing every morning. Been taking it just over a week now. Not much difference yet but I am still hopefull it will at least help some of my symtoms, if only my belly (which it seems to be)

Just filled in the 'any changes' inc benefit form & posted it. I hope I don't have to mess around with that. I really dont have the strength. I know some people must think I am doing really well or I am better as I seem to the outside world very busy & ok, but you should see behind the scenes!! I have to try & do stuff in between all my crappy times & it is great that I have something to focus on but don't be disalusioned. Focus does not make you better it just helps you to pull through the shit times!

I know it is all very difficult for none ME.CFS or FM sufferers to understand, but if you at least believe what we are saying that is one step closer to understanding.
Right I'm off now because my eyes are shutting & my heads starting to hurt again. At least I can kinda walk today & not look like John Wayne!!

Saturday 3rd July 2010 Ellephantastic open day & Raffle Draw!!!

2010-07-06T16:38:00.000+01:00

Here are some pictures from Saturday.
Picture 1 is of all my handmade items for sale or order.
Picture 2 is some of my craft products for sale which I now stock in my shop.
Picture 3 is of the raffle prizes all out for people to see & ready for the draw.
Picture 4 is my tombola (which the kids loved) Money from the tombola I donated to AFME.
Picture 5 is my sister & her bump (Eva) my niece's drawing & Kirsty who helped me sell tickets & baked some yummy Whoopie buns for the day.
Picture 6 is me getting ready to do the draw!
Pictures 7,8 &9 are the first prize ticket being drawn!

1st White England Shirt - G Wroe
2nd Red England shirt - Hazel (Didos) Christison
3rd Justin Lee Collins signed book - R U Brown
4th Gadget Show signed t-shirt - Yvonne Baker
5th 2nd Gadget show signed t-shirt - Sue Brown
6th Gadget Show signed postacrds - Ann Currie
7th Bracelet & Watch set - Yvonne Baker
8th £15 knitted toy voucher - Kate Thomas
9th £5 voucher for my shop - Ali Dowling
10th Time for Tea set - Rachel Taylor
11th Avon set with deodrant - Chris Daker
12th Next smellies set - Sandra Simpson
13th Avon set & scrunchie - Kristina Jackson
14th Jewellery donated by Angie - Sally Trousdale
15th Shoe jewellery holder - Clare Rowsby
16th Free file & polish with Joanne - Nadine Stotten

Raffle 3rd July 2010 @ 2:50pm
witnessed by
Myself - Helen Laurence
Julia King
Kirtsy Brunton
Dawn Doherty
Yvonne Baker

it was a lovely day & so far I have raised £243.00. I still have a couple of wrist bands & trolley keyrings to sell which will take me to my target amount of £250.00.
Thank you to everyone who has helped &/or supported in anyway no matter how small, it is all much appreciated.
I have announced the winners, informed the winners & most prizes are now either with the winner or on their way!! I hope you all enjoy x

Thank you x

2010-07-06T09:15:00.001+01:00

I would like to thank all the peopl who bought raffle tickets or supported me in anyway with the raffle & my open day. I am shattered but it was lovely. I will be posting all the details & some photos soon.

Ellephantastic Draw in aid of Action for M.E.

2010-07-03T09:00:00.009+01:00

***This post will remain at the top till 3rd July***

Ellephantastic Draw in aid of Action for M.E.

Draw date: 3rd July 2010

Deadline to return/buy tickets: 3rd July 2010 2pm

(Any tickets which do NOT make the draw will be treated as a donation to Action for M.E.)

1st Prize: Red England T-shirt signed by Ian Wright

2nd Prize: White England T-shirt signed by Ian Wright

3rd Prize: Justin Lee Collins book "Good Times" signed by Justin Lee Collins

Plus other prizes including T-shirts (2) signed by The Gadget Show presenters & a set of signed pictures from The Gadget Show presenters

(All prizes have been donated by Channel Five)

Tickets cost just £1.00 each

How to buy tickets:

Cash - Directly from me or friends/family selling tickets

You will be given your tickets straight away

Cheque - Made payable to

Mrs H M Laurence & post to 24 Stuart Road, Acomb, York, YO24 3AU

Please state how you would like to receive your tickets - e.g post or email

(please provide appropriate information with your cheque)

Tickets will be forwarded to you by post/email once cheque has cleared

Paypal - To send by paypal please do the following (so no fees are taken!!)

Sign into your paypal account,

click the send money tab at the top,

type my email address ellephantasticshop@googlemail.com,

enter the amount to be paid e.g £1.00 for 1 ticket or £5.00 for 5 tickets etc

click on the personal tab,

either leave as gift or click other,

click continue,
Please put your name, address, email address & telephone number in message box

click send money

Your ticket/s will be sent to you by email for you to save &/or print

or

(Tickets are books of 5)

If you would like to sell tickets for me or you have any questions etc please contact me

All tickets to be returned to Mrs H M Laurence by 3rd July 2010

Cheques & address details as above

No tickets to be sold to persons under 16 years of age

Action for M.E.

PO Box 2778, Bristol, BS1 9DJ

www.afme.org.uk

0845 123 2380

Registered Charity number 1036419

Scottish reg number SCO40452

Company no. 2906840 Limited by guarantee

Promoter: Nicola Fickling c/o Action for M.E. PO Box 2778, Bristol, BS1 9DJ

Registered under the Gambling Act 2005 with Bristol City Council

Permit no. 08/06524/GALOT

Hospital Appointment

2010-05-12T20:46:00.000+01:00

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 raffle...so 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!!!!

2010-05-12T14:49:00.000+01:00

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/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!

2010-05-12T09:57:00.001+01:00

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

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

2010-05-10T09:26:00.000+01:00

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!

Severe pains in my neck which can cause me to pass out, just from holding my arms up at shoulder height.
Bruises & not always small ones ALL over my legs. I look like I've been beaten up!
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!
Loss of voice &/or sore throat
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 joking...it is VERY scary.
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.
Really bad muscle twitches - my legs fly off in all sorts of directions when they feel like it!!
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!!
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.
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!!

Blogging for CFS/ME week....

2010-05-07T15:33:00.000+01:00

.....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 :-(

Blogging for CFS/ME ...awareness in May

2010-05-01T15:12:00.000+01:00

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

awesome news!!

2010-04-27T18:57:00.000+01:00

Channel FIVE are offering some FABBY prizes for my online charity auction/raffle etc to help promote CFS/ME awareness week & day which is 12th May....wohoo!!

Make sure you keep an eye out on more news because there is more to come & find out how you can get involved & maybe the a lucky winner!!!

What a busy couple of days...

2010-04-24T11:30:00.000+01:00

.....busy mentally more than physically. Poor bun Ebony was poorly & had to go to the vets so I've been worried sick which gave me headache & I felt ill myself. Luckily she seems to have picked up now & is home dancing about her cage with her carrot in her mouth again so...phew...glad thats over!

Wow really had to think what day it is!!!!

2010-04-22T11:10:00.000+01:00

Not feeling all together there today. Bit stressed out because one of my 4 rabbits had a rather large pool of blood in her cage this morning so I'm taking her to the vets later. Not very good timing as we're a bit skint & I don't know if I'm on my arse or my elbow today....foggy brain alert...hence the title....took me at least 5 mins to work out what day I'm on. ....Doh! Just realised I could have checked the calendar on my laptop....oh dear...very foggy!!

Pleased with myseld yesterday as I got some knitting done. Not getting alot else done though. Small steps.

Well thats it for now as I can't even think straight or form words in my head to type!

Very moving, clever & true song/video

2010-04-20T18:26:00.003+01:00

I watched this on Laurel's blog Dreams at stake this morning & was almost blubbering when my friend came to see me...probably a good thing because if I'd started crying I probably wouldnt have stopped!!

Hurdle 1 & 2 ...done ...check!

2010-04-20T16:47:00.003+01:00

Hurdle 1 - start this blog

Hurdle 2 - get the go ahead from Action for ME for my fundraising ideas!!

Hurdle 3 - yet to complete!!

Last year I started blogging about my ME & the diet I was trying. Then at the beginning of this year I did a big whoopsie & deleted all my blogs.....doh! I then started a page on my craft blog as I um'd & ar'd about doing another blog just for my ME. I have debated long enough! I have decided to try & be a more active ME supporter, listener, & fund raiser. Starting with the blogging for ME/CFS awareness week. I am hopefully organinsing some fund raising things to coincide so watch this space!