Tuesday, December 27, 2011

Thanks!



Back in November I asked if anyone would be able to help me with some research for my insurance claim. I was exposed to chemicals in my job and this is the reason I believe that I came down with ME/CFS. Anyway, I was overwhelmed with the response ... many people went to great lengths to help me and as a result I now have a good foundation of information and reports to support my claim. I have also managed to secure a lawyer who is willing to just do the basics and charge me an hourly fee, so I don't need to sign any scary binding agreements with them. I have also been lucky enough to enlist the help of some of the most well respected specialists in the field of ME/CFS to write expert testimony for me. So .. now I just need to pull all these pieces together in a coherent way and I can lodge my claim. Yippee!!

Thanks a zillion to anyone who has helped me along the way .. I do appreciate just how much time and effort it takes to extend yourselves in such as way.

Saturday, December 17, 2011

One desperately ill woman ...


Maria is a friend of mine from facebook. She suffers from an illness called Lyme Disease which largely overlaps with my illness. She and I share many of the same symptoms and lack of quality of life ... only things are MUCH worse for Maria.

Here is an excerpt from a recent post of hers:
I desperately need safe housing where I can continue my fight against late stage neurological Lyme disease. I am 99 percent bedridden and I live in a very old trailer that is filled with mold and mildew. The bathroom wall is turning to mulch and the floor rotted through to the hall closet. I cannot afford to use the central heat as the unit is antiquated and costs half of my monthly income to run. I have no insulation and I can see the wind blow in the kitchen behind the stove with the doors shut. I get birds inside with the doors closed as well. The electric sockets on one side of the trailer get hot enough to burn when you use them or run the washing machine. I am in a wheelchair and can not fit it in the the bedrooms or the bathroom and I have no wheelchair ramp so I have to scoot on the floor to get out the front door and down the steps.
I have been dreaming of what it would be like to be in a clean house or apartment but I live solely on disability which is less than $700 dollars a month. My hope is that someone will be able and willing to help me with this dream so that I can get well and pay it forward to others in hazardous situations.


I have just made a donation to help Maria. I know it's so close to Christmas and most of you have already spent up big, but please stop for a moment to think about what kind of Christmas Maria is going to have. If you are in a position where you can give a few $$$ then PLEASE do so, you can donate anonymously if you wish. If you are unable to donate then you can still help by spreading the word ...

The link to Maria's donation page is here - http://www.giveforward.com/healthyhandicapaccessiblehousing

Thanks, and Merry Christmas to all :)

Thursday, December 8, 2011

Another year goes by


Today is the eleven year anniversary of my partner Robert's death. I just read back over what I posted last year about this event and nothing has really changed, I feel the same today as I did a year ago .... so rather than repeat the same dribble .. please ready what I wrote last year, I think it says it all, and probably better than I could today ...

The post is here - http://cfsngay.blogspot.com/2010/12/feeling-truely-blessed.html

Oh, and the photo above is me and Robert in Nepal the year before he died.

Monday, November 21, 2011

A Helping Hand


I am REALLY sick at the moment and I need some help with something important so I have decided to be brave and just ask. Like many of you I hate asking for help, it’s humiliating .. but I have no choice really.

A while ago I discovered that my ME/CFS was caused by a chronic exposure to solvents in my old job. I am entitled to lodge a compensation claim though ‘Workcover’ but I have to solidly prove my case. My exposure to the chemicals or the fact that I now have very high levels in my blood is not in question, the issue is actually proving that this is what caused my ME/CFS. What I need to do is find some good evidence by way of research reports, preferably peer reviewed and published that show a link between ME/CFS and solvents or chemicals in some cases. Also I am hoping to find some ‘experts’ who can write a report for me stating their professional opinions about a link between solvents and ME/CFS. This could be people like Dr’s, researchers or scientists.

So what I am asking is that anyone who has the energy and time and is up to the challenge please do some googling for me and see what you can find. Like I said research papers or email addresses of suitable Dr’s, scientists etc who I can write to.

I would just prefer to do this myself but I am too sick to be spending more than a few minutes online at a time and I have a deadline of about January to have my whole case ready …

I appreciate any help offered but totally understand if no one is in a position to help at this stage. I hope you are all doing ok.

Cheers!!

Monday, November 7, 2011

Art 4 Who?


Quite some time ago I set up the ‘Art 4 XMRV’ project. The idea was that artists and crafty people could contribute their images and I would post them on our Redbubble site for sale as gift cards, prints, shirts etc. All the money raised would be donated to support ME/CFS research. The project has been quite successful in both giving our creative community an outlet for their work and also helping to raise some much needed funds.

Due to the recent developments with XMRV and the Whittemore Peterson Institute I have decided to re-brand Art 4 XMRV to Art 4 ME. It’s more general and inclusive and seems to please more people. We were donating all profits to the WPI but because the community is now very divided I feel the best thing to do is to just simply ask where you all think the money should go?

So, please leave a comment with your suggestion for who we should now donate out profits too. We don’t make a lot of money so unfortunately we will have to just choose one organization to support rather than splitting the money between several.

Due to annoying restrictions on facebook, the only way I could change the name there was to delete a whole bunch of people (you can only change the name of a page if it has less than 100 members). So, PLEASE go back to our facebook page and see if you are still a member or not and ‘like’ the page if need be. It’s a good way to see when new work is added or when we have specials or other info to tell you. The facebook page is here - https://www.facebook.com/art4xmrv (yes the url still says art4xmrv but the page itself is now Art 4 ME).

Coming up to Christmas we are trying to encourage all artists to contribute images suitable for Christmas cards, so if you have something then please get in touch. We will also be adding a few Calendars for sale in time for the New Year.

Finally, you can find the new Art 4 ME site here - http://www.redbubble.com/people/art4xmrv

P.S. don’t forget to leave your message with suggestions for who we should donate our money to!

Saturday, October 8, 2011

Friends



This post is mostly for my old friends but others will chronic illness will probably relate ...

People who do not respond to messages are just plain rude as far as I am concerned. I am sick of being made to feel invisible. I AM NOT INVISIBLE, I am the same person I was before I got ill, if you no longer want to be a part of my life then delete me, don't keep me on your friends list and then ignore me when I message you ...

A couple of days ago I posted the above text on Facebook. I feel that I need to explain my motives because several people have been offended. For those who responded, thinking they had done something wrong, please accept my apologies. The person that this post was directed towards has not responded. Under normal circumstances I most likely would not have posted this kind rant and rave, however it's been a very difficult week, with the death of a friend and some other very unsettling things occurring in the ME/CFS community. I guess I've been feeling more alone and isolated than usual, and yes INVISIBLE. Since getting ill two years ago I have hardly had any contact with my previous healthy circle of friends. While I understand that people are busy and time just seems to pass by it's difficult being the one who gets left behind and forgotten about.

I don't want friends to go out of their way, and I don't need people to check in with me constantly or make a huge effort to see me frequently. What I would appreciate is just to be included in friends lives in a small way, a message on Facebook asking how I am or telling you what you've been up to recently, a text message to say you are in the area can you drop in and say hello for 5 minutes. Being isolated and alone for 2 years has made me feel as though I no longer have any value or worse or anything to offer anyone. But the truth of the matter is that I am still the same person I was before I became ill. My general interests have not changed, my sense of humour is still sharp as it ever was, yes my sense of style may have slipped somewhat but I blame that on age rather than illness, ha ha ha.

It recently came to my attention that the reason many people have not been in touch, other than the fact that they are just busy people, is that they feel uncomfortable, don't know what to say or how to act etc. I totally understand this, I haven't changed but I can't deny that things about me have changed, and I know that people have difficulty knowing how to react to change. I am at the stage now with my health where and able to communicate a little more and occasionally have short visits, maybe half an hour at a time. I’d like to invite anyone that’s been absent in recent times to reconnect with me. I'm happy to explain exactly what's going on with my health, or to not talk about it, whichever makes you more comfortable. I do hope some of you will take me up on my offer, please imagine for just a second how you would feel if your job, your social life, your ability to care for yourself and all your friends were to be taken away. IT SUCKS!! Many of those things I no longer have control over, but I can still be a friend!!

What a pathetic, sad and sorry sounding post that was! Hahaha. Oh well, better to get it out than keep it in. Anyway, so the gist of the thing is please get in touch, I'd like to pick up where we left off. I may not be able to come to your gatherings or events but I’d still love to hear about them!! Listening to what my friends are up to has got to be way more interesting than what complete strangers on Dr Phil are up to !!!

Sunday, August 28, 2011

Floppy Clocks


A week ago I went and had an ultrasound done on my stomach. As most of you will know I have had ongoing stomach issues that contribute largely to my illness. The scan was to check that I don’t have an aortic aneurysm or tumor etc. The trip out to go and get the scan was more terrifying to me than the possibility of them actually finding something scary. In the end a 15 minutes scan took 5 hours because in order to leave the house I needed assistance from an ambulance (they physically had to carry me back up the stairs to my apartment, four of them, one on each limb). Because I wasn’t an emergency I basically had to take the ambulance whenever they had one free … so they picked me up 2 hours before my appointment initially and then came to get me 3 hours after my scan was done. It was a very very long and exhausting day, but I am proud of myself for getting through it. My Dad came along and acted as my voice which was a huge help. Anyway … the only thing the scan showed was some cysts and vascular calcification on both kidneys. I have a phone appointment with my Dr next week to find out if there are any implications of this. From what I have read online it’s no big deal really. So the mystery of what is causing all the stomach pain continues unfortunately, but at least I don’t have something that is going to kill me!

The week following my appointment I have been pretty badly crashed although not as badly as I had expected. I hate times like this when all you can do is nothing at all … rest rest and more rest. Five days without a shower (again), no reading, very little watching TV or being on the computer.
The last 2 days I have finally bounced back so have been trying to play catch up on everything ….
I realized this morning that even on my better days it’s still all about playing catch up because if I shower today then I will need total rest for a few hours afterwards and then will only be able to do small essential things like eat and probably watch TV … so the other stuff I’d like to do today such as put my clean laundry away will have to wait till tomorrow … and then it’s the same scenario all over again … so everyday is catch up!! It’s like we have to operate on a Dali floppy clock … we should start a ME/CFS time system, one hour for us equals 24 hours for ‘normals’. Hahahaha

On a parting note I just want to say that I am excited because I have now receieved all my supplements to start on the Simplified Methylation Protocol. I will most likely post about this next time and explain what it is and how I am going. It’s good to have something to feel excited about !!

Thursday, August 11, 2011

Busy busy busy


It’s been an outrageously busy time for me. Some good and some not so good. A good bit was my birthday! I had been dreading the day as it approached because it felt like it marked a year wasted, a year of being totally housebound and lonely etc, but when the day finally arrived I was pleasantly surprised by long missed feelings of genuine joy and contentment. I received numerous cards, gifts and well wishes and it made the day feel like a birthday should. It inspired me to stop moping around and get on with whatever I could. So … busy busy busy.

I have been planning on moving house since last year because my current home is up 3 flights of stairs and it’s impossible for me to navigate them, so I am trapped. Before I can even start to plan for this I have some things to take care of … and now they are all nearly done!! I had to do my tax so I know exactly how much money I have to play with, I had to do a few minor fix it jobs such as touch up paint and replace a skirting board and a light fixture and I had to get some wooden shelves ripped out of my garage because they had been attacked by white ants. The jobs are now 95% done. Yah for me!!! My Dad helped with most of work and getting it all sorted was a far bigger task in my mind than it reality. It was a good lesson.

During all this I finally had a visit from a podiatrist to look at my poor feet. The good news is that I am not in any immediate danger of losing toes. She said that the lack or circulation is temporary and intermittent so as along as I make an effort to keep the blood flowing then everything will be ok. She suggested some simple exercises I can do whilst sitting and the added benefit is that by doing these my balance should also improve. The not so good part was that she said the burning pain is neuro and not foot related as such so there was nothing she could do.

The bad stuff is made up mostly of frustrating situations. Since getting the test results for Solvents toxicity I have been trying to find a Doctor who has some experience in this area who will consult with me. It has proven to be an impossible task because I am housebound. Legally a Doctor can only do phone consultations if the patient has first been into the Doctors office for an initial evaluation. The only other option is a Doctor who does housecalls and it seems no one with any experience in anything of value will do this. So I am stuck … The toxic exposure occurred in my old work place so I need to lodge a Workcover claim but I cannot do this without a Doctor providing an official diagnosis and I also wont be guided/treated by someone with adequate knowledge in this field. Really frustrating.
The other bad thing looming is that I need to go and have a scan done. My stomach issues still have not resolved and I am now concerned that perhaps I have an aortic aneurysm. Leaving the house pretty much guarantees me a major crash but I simply have no choice. I will be speaking to my regular Doctor this afternoon about this so I will post more when I know more …

Busy busy busy!

Sunday, July 24, 2011

Thursday, July 14, 2011

Raynauds?. Yucky


This is just a quick post. I think I mentioned some time ago about about having burning/numb feet and hands. This has stayed the same in my hands but is getting worse in my feet. I also still have fungus under my toe nails which is icky. From what I have read Peripheral Neuropathy is the reason that diabetics sometimes have to get limbs amputated. Clearly I have a circulation problem. Wondering if anyone has any advice? My fingers stay wrinkly like this all day everyday and my toes are really red and sore and are blistering too .... sad state of affairs I'm afraid. They do seem to be a little better if I can keep them warm but it's an impossible task most of the time. Anyway sorry for the gross photo but really thought people should see this!

It's a few days since I posted this about my feet and fingers and I have now talked with my Dr and he says the red swollen toes are RAYNAUDS as suggested by Kirsten in the comments. My Dr is arranging for a podiatrist to come and see me and hopefully find a way to help the situation

Friday, July 8, 2011

Volatile Solvents, my needle in a haystack!




Wow, what a day! Today I think I found the needle in a haystack ... the cause of my ME/CFS!!!
Since getting ill 18 months ago I have spent what little energy I have on searching for answers. I have spent thousands of dollars on every test my Doctor recommended as well as any others that seemed plausible. Every time I would get a new test I would eagerly await the results hoping I would test positive for something, but they always would come back negative ... Until now!

I have tested positive for Volatile Solvents!!

Before getting ill I had been working as a graphic designer for a signage company. I sat in a small office with poster printer which ran solvent inks. The machine stank and everyone in the building frequently moaned about it. In terms of health and safety regulations the machine should have been in its own space with extractor fans etc but instead it was just plonked near my desk. Several years of this situation has obviously caused some serious exposure issues.
The little reading I have done so far confirms that this type of exposure causes neurological damage and results in many symptoms I currently have such as, muscle atrophy, dysautonomia, mitochondrial failure, heart problems, brain fog, memory loss, brain damage of various kinds, fatigue, headache, dizziness, impaired vision, muscle weakness, loss of sensation, balance problems, all the typical ME/CFS stuff …
I believe it is possible to detox to a degree with the help of glycine and sulphates – amino acids but I need to look into that further. I have read that a lot of the damage is most likely permanent unfortunately.
Anyway, lots more reading to do now. Anyone who knows anything about this PLEASE leave me a comment. It‘s great to have a diagnosis, shame is a crappy one!

Oh and if you are interested to read more yourself then have a look at the lab that did my test - http://www.metametrix.com/test-menu/profiles/toxicants-and-detoxification/volatile-solvents

And here are my test results, if you click the image you will see a large version.

Saturday, June 11, 2011

Someone needs a SMACK IN THE MOUTH!


This whole XMRV debate has me wanting to smack someone in the mouth!! Aaaahhhh!!!!
I’m not a Doctor or a Scientist but I do have common sense, and even blind Freddie could see that the big wigs are just playing silly buggers with us. Regardless of whether XMRV is THE major player or not I am 100% convinced that it does exist in people with ME/CFS. The thing that makes no sense to me is why anyone would spend hundreds of thousands of dollars doing ill thought out worthless studies.

If Dr Judy can find it and the likes of CDC etc cannot, then why don’t they just invite her to supervise a study in THEIR lab? Dr Judy could show the idiots step by step how to do the replication AND if it were in their lab it would be hard for them to argue contamination.

As far as I am aware no one is saying it doesn’t exist in prostate cancer patients, so why don’t they stop faffing around trying to find it in our blood and start using tissue biopsies in their studies?

If XMRV doesn’t exist in ME/CFS patients then how can it be explained that some people who are trialing antiretrovirals like Dr Deckoff-Jones are getting well?

Seriously people, stop fucking around with our lives and try using your pea sized brains to actually do something useful !!!!

Sunday, May 29, 2011

New Goals


The last few months I have been feeling quite directionless in terms of what to do. Looking back over the 18 months since I got sick I have researched my bum off and I have tried quite a few things, 99% of which have ether made me worse or have done nothing other than cost money. I had arrived at that place where you think ‘what’s the point in trying’, but something in my nature just wont let me accept that I have to just be patient and wait for someone else to find the answer. So, once again I have decided that it’s up to me to find a way to feel better, even if it’s a tiny bit better, I need to feel like I am moving forwards not backwards.

I have been considering my symptoms and how my body actually feels and it’s led me investigate the Simplified Yasko Protocol, which works on the Methylation cycle and also possibly anti-viral medications. I have also been thinking more about what my life was like during the year or so before my illness really set in and that has led me to want to investigate toxins such as heavy metals and solvents. I had been working as a graphic designer in a small room next to a solvent poster printer for about 5 years. The printer was supposed to be in it’s own isolated room with extractor fans … but it wasn’t so I consider this to be a very real source of exposure for me.

I spoke to my Dr last Friday and he agreed to order me appropriate tests which would indicate if the Yasko protocol was likely to work for me or not. He also agreed to try and get me proper titre tests for EBV, HV-6 and CMV … something that is near impossible to get in Australia. There is only one lab which does it and they are at the Infectious diseases unit in Victoria. They usually wont agree to run the tests for ME/CFS patients but my Dr said he would try his best!
I am also looking at tests for heavy metals and solvents which are dead expensive but I do feel I need to know for sure. No knowing makes it impossible to move forward so I may as well hand over the money and find out.

Aside from that, my Gastro Dr came and saw me at home this morning which was excellent. He usually doesn’t do home visits so I feel really lucky! He suggested a few blood and urine tests and then possible a CT scan. He said he will organize an ambulance to take me to the hospital just around the corner (I can see it out my window right now) for the scan to try and minimize any ME/CFS crash that the ordeal might cause me. I also asked him about an odd lump I have been able to feel in my stomach, I had thought maybe it was a cyst or tumor. He said it’s my aortic valve and the reason I can feel it is that the muscle around it has wasted …. I am super-model thin these days. Anyway, good news, it’s not a tumor!!!

So, fingers crossed that something in one of these tests will give me some guidance as to which treatment I should try.

Thursday, May 19, 2011

Stop procrastinating and VOTE!


THIS IS A RE-POST FROM MY FRIEND BARRY'S BLOG. His site is here. I am re-posting his blog post because he said exactly what i was thinking ... so, here it is:

Something is bothering me and I want to share it.

As those with chronic illnesses who read this will no doubt be aware, the Whittemore Petersen Institute (WPI) is shortlisted for a Chase Community Giving charity award. That award will be based on how many votes the WPI secures via Facebook and the amount can be up to HALF A MILLION DOLLARS.

Let's go back a step though. In becoming part of the online community of people with ME or CFS or whatever we define it as, I see active communities running into the thousands in terms of numbers of members. One desire seems to unite us - a desire for robust biomedical research to determine why we are sick and how we can be effectively treated/cured.

I'm sure you know where I'm headed with this post. Along comes a financial institution who is prepared to give up to HALF A MILLION DOLLARS to fund this research. And all we have to do is click a few buttons on Facebook and vote.

So here's what bothers me. The first round saw the WPI collect a decent enough number of votes but a tiny amount when you consider how many people are active on Facebook and have a vested interest in ME/CFS and in helping find a cure. The second round started today and we are struggling to stay in the Top 10. We are being beaten by a marching band!

It's all well and good us trying to gain votes from our friends etc but, really, votes purely from that online community I keep mentioning should see us storm this contest and bank HALF A MILLION DOLLARS.

I know I'm preaching and I know we are all sick but really there can be no second chance for something like this. We will regret it for years if we do not squeeze every cent out of this charity award. HALF A MILLION DOLLARS (last time, promise).

Anyone who reads this, the message is simple. Vote. Please. This isn't X Factor or American Idol and this isn't some lame popularity contest. This is the potential for people to get their lives back.

Full instructions below. Oh, and please don't let the 'unsecure connection' warning put you off. Nobody is going to steal your identity during the 2 minutes you use a Facebook app to vote.

Thank you.

STEP-BY-STEP Instructions:

1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving.

2. "Like" Chase Community Giving by clicking on the "Like" button.

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.

4. Cast your vote for WPI by clicking the "Vote Now!" button.

CHASE COMMUNITY GIVING: BIG IDEA

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of their innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of their 10,000 sq. ft. medical facility. Here they will engage in revealing clinical trials and provide onsite care to those who are unable to afford care. The WPI require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these underserved populations

Wednesday, May 4, 2011

HELP !!!!!!


12th May is International Awareness day for ME/CFS.

I have been severely ill with Chronic Fatigue Syndrome since October 2009 and to be blunt about it, I HAVE HAD ABOUT ALL I CAN TAKE !!!!!! There are an estimated 17 million people worldwide suffering with this illness, some are still able to continue with life to a lesser degree and others like me are totally housebound or even totally bedridden. I have lost my job, my friends, any remnants of a social life, my independence, self respect and I will even have to move house shortly. Astonishing as it sounds I am one of the lucky ones because I have a government who will allow me disability support and I have only been ill a short time, others I know have been suffering for 30 years or more. This suffering needs to stop and thankfully progress is finally being made by a private research facility in Reno Nevada. The Whittemore Peterson Institute have made real breakthroughs in the science behind the illness but being a private lab they need community support to continue their research. My life and 17 millions other lives are relying on their continued efforts. We cannot wait forever, our life expectancy is 25 years less than an average healthy persons. For the month of May we are all banding together in an attempt to raise more money for the WPI. I know many of you are struggling financially yourselves and if this is the case for you then please don’t feel obligated to reach into your pocket, however, if you are in a position to spare a few $$$ then there are two ways you can help me and others like me.

Firstly you can purchase a gift card or print from the ‘Art 4 XMRV’ project I have set up. All of the artwork has been created by talented people who are suffering with ME/CFS and 100% of the profits will be forwarded onto the Whittemore Peterson Institute. If this interests you then please visit the shop here - http://www.redbubble.com/people/art4xmrv

If you aren’t really interested in making a purchase but you’d still like to help you can make a donation directly to the WPI by going to their website here - http://www.wpinstitute.org/help/help_donation.html (please mention in the comments box that you came via 'Art 4 XMRV' so they know how you found them)

A few $$$ really can make a difference, please don’t be complacent, if you are in a position to help then PLEASE step up to the plate and do so. Any donation will be GREATLY appreciated !!

Thanks for reading :-)

Lee Lee

Saturday, April 16, 2011

One Small Step .....


Finally after being in a really bad place for many many months I feel like I have turned a corner! I think this is a good opportunity to do a review of my current symptoms and medications …. So … no emotions in this post hahaha!

I recently started taking Propanolol for my POTS/OI problem. This had become one of my most disabling symptoms and after trying several things with no success I was beginning to feel doomed. My POTS got really bad last August and has pretty much stayed that way, not being able to stand for more than about one minute due to the tachycardia and low blood pressure. I tried increasing my salt which did help initially but then the extra salt caused the Helicobactor Pylori (which I didn’t know I had) to multiply bigtime and within weeks I had a stomach ulcer. I had to stop the salt and then get treated for the Helicobacter. This made me sicker in everyway possible and even now the ulcer problem has not gone away. More recently I tried Florinef, which did also help but after a few weeks it flared my stomach issue up badly and again I had to stop treatment. Propanolol is a beta blocker and it does work for many people. I had been reluctant to try it because last year when the POTS first got bad I tried a different beta blocker called Atenolol and it made things much worse! Anyway after hearing good reports from others that I know I decided to try this one out and …. YAAAHHHH!!! It’s working for me! I can now stand for as long as my legs will hold me which is currently about 3 or 4 minutes. I can also now sit on a stool which I was unable to de before. So, I can make a sandwich in one hit or make a cup of herbal tea. I am sure that over a bit of time I will regain more strength in my legs and will become more functional. I think deconditioning has been a big problem because I haven’t been able to do anything other than lay down all day. My muscles are week and my stamina is very very low. A walk to the kitchen (about 10 steps) puts me out of breath.

On a slightly more negative note …. My gut problems are not resolving. My Doctor and I really just have to guess what is going on because the only way to know for sure would be to have an endoscopy and colonoscopy … and I am still not able to leave the house so it’s impossible. We know for sure I had bacterial overgrowth last year which antibiotics cleared up. It’s highly likely that it’s returned. I also know I have Candida/Yeast problems, the clearest evidence of this is my toe nails which are all infected (not quite as gross as it sounds, just discoloured and weird). We also know from symptoms and some success with medication that I did and maybe still do have an ulcer. I take Nexium which reduces the amount of stomach acid your body produces but I still have constant pain/discomfort. I have just finished a short course of antibiotics hoping it would help a bacterial problem and it certainly stirred things up, but has not made things better. I now have Diflucan to try which kills Candida. I am trying to be brave but I know that if I do have Candida in the gut then the Diflucan will cause die off symptoms and I will be sick as a dog … but I guess ‘no pain no gain’. Aside from that I am currently taking Slippery elm which sooths the digestive tract and I take a good probiotic. What else … um … oh I take a digestive enzyme because my Pancreas is buggered. Other than that it’s just supplements etc.

A quick list of my other symptoms: Insomnia, constant fatigue, muscle weakness, some paralysis in my legs (varies day to day), random pain – (ligament, joint, bone, muscle), random fluey and ‘poison’ symptoms, low body temperature, random eye sight problems, constant back ache, headache, need to pee every 10 bloody minutes, blood sugar levels all over the place, night sweats, food intolerance, burning feet and hands, restless legs, numbness in right arm, tremors … um, I think I will stop there … I thought it was going to be a short list because I feel better than I did some months ago … but until you think about it you don’t really realise just how much is going on. I guess when it’s constant you do actually get used to some of it.

One last thing. Thanks to everyone who has bought cards or prints from the Art 4 XMRV project and to the artists who contribute. We are continuing to raise much needed money for CFS/ME research. If you’d like to have a look then please go here - http://www.redbubble.com/people/art4xmrv

Also the Count ME in project is going great guns and has raised thousands of $$$. Please check them out here - http://countmeincampaign.blogspot.com/

Friday, March 4, 2011

And then there were none!


Thanks to everyone who shared their comments on my previous post, it was something I had wanted to talk about was not sure how it would be received. This post is similar in that regard. For those of you who are also suffering with a debilitating illness I am sure you will relate but for friends and family it may be something that just hadn’t even occurred to you.

Since getting ill my circle of friends has gotten smaller and smaller. Initially I had felt abandoned by everyone. Some people eventually got in touch and some people never did. I do understand that as the friend of someone who is ill you may feel like you have no idea what you can offer or even just what to say, or possible frighten of catching whatever it is … so some of you find it easier to just stay away. I also appreciate that life is busy and although you mean well time just gets away …. I have never been angry about this but for some time it saddened me.

As my illness progresses I am finding that it’s me who is cutting ties with people. As much as I hate spending all day everyday alone I more often than not feel like it’s the only way. I just can’t handle social visits anymore. When someone I know comes to visit it’s exciting for me and I want to be attentive but 5 minutes of that and my concentration is gone and my body just starts to say it’s time to lay down in a quiet room. It’s so hard to say to someone who has gone to the trouble of driving over to see me that they have to leave already … it’s heart breaking in fact. The other thing I struggle with is actually having the situation feel ‘normal’. Usually when you visit friends you ask ‘how are you’ and ‘what have you been up to’ … but if someone asks me those questions I have no answer … ‘how am I’ – really CRAP, ‘what have I been up to’ – laying on the couch all day everyday. No one wants to hear that and quite frankly I don’t want to say it. If I ask the same questions of the visitor they often feel guilty that they are well and have been doing something … doing anything!! So the whole experience is hardly like two friends catching up.

So, my circle has become tiny now and while it’s what I need it is defiantly not what I want. As time passes I am watching my life morph into one that in no way resembles who I was …. So who am I becoming??

Monday, February 21, 2011

Choose Life


Sounds simple enough, I choose life! At this stage of the game I do but in all honesty I am starting to wonder how long I am going to be able to continue to make that choice. The last few weeks I have found myself spending a lot of time considering just what life is to me and what rights I feel I have over it. I know that I have been fortunate enough to have lived a life that has brought me great happiness and I have done extraordinary things, but … I have also suffered unbelievable losses and sadness. At this age of 42 I feel like I have experienced significantly more than most my age. I have already ticked off everything on my bucket list. With this in mind I have been asking myself if it would be wrong of me to terminate my life if I found myself in a position where I no longer felt happiness or sense of purpose. It’s a difficult question but the only answer I can come up with is no, it wouldn’t be wrong. The sticking point for me is the pain it would cause Mum and Dad and Michael. I have felt that pain myself first hand I don’t think I could give that to them in good conscience. It’s such a dilemma. When a family pet suffers we consider that the kind and loving thing to do is to euthanize the animal. Why do we not offer our loved ones the same respect? It’s not fair.

I have chosen to write this post not because I am currently contemplating suicide but because I am sure that most of us who are severely effected must at some stage address the issue. It’s such a taboo subject and we really need to talk about it. I am really interested to hear other peoples perspectives, so please leave your comments.

On a more cheery note … the Art 4 XMRV project has had great interest. Thanks to all the artists who have contributed work and to all the people who have already purchased cards. Please keep it in mind and pass it along when you can … the more cards we sell the more money we can raise for the WPI’s research. If you have no idea what I am rambling on about then please read my previous post. Cheers!

Saturday, January 22, 2011

Art 4 XMRV


Several weeks ago I started work on a project to help raise money for the Whittemore Peterson Institutes research into XMRV. By now most of you will know all about XMRV. If you don’t then have a look at the WPI website http://www.wpinstitute.org/

My project is called ‘Art 4 XMRV’. The idea is that creative people who live with CFS/ME can contribute artwork which will then be placed on our website for sale as cards and prints. 100% of the profits will then be donated to the Whittemore Peterson Institute. It’s a bit of fun and an easy way for many of us to feel like we are actually doing something positive.

If you fancy yourself as an artist or photographer then please email me at art4xmrv@zoho.com You are initially welcome to contribute up to 5 images, please also include titles for these and a short paragraph about your life with CFS/ME. The project will be ongoing so you will be welcome to submit more work down the track.

If you are not the artsy type but would still like to help then you can do this by helping promote us. There are 2 ways to do this. You can post links to our facebook community page - http://www.facebook.com/pages/Art-4-XMRV/183873631637894 and suggest that people ‘like’ us and you can also post links to the actual site where the artwork is for sale - http://www.redbubble.com/people/art4xmrv

We already have a good number of artists involved and some great artwork for sale … all we need now is to start promoting and start making some sales!!!

It’s pretty clear at this stage that the Whittemore Peterson Institute is the best chance we have of finding a cure or real treatment for CFS/ME so let’s do what we can to help keep them afloat.