Thursday, December 13, 2012

Keep it clean




Never underestimate the importance of domestic cleanliness. Two weeks ago I started to decline into yet another pit of misery. Same old story of waking up feeling like I have been hit by a truck, poisoned and unplugged.  About a year ago I started to see a distinct pattern with this. Every 2 weeks my cleaner would come and vacuum, do my laundry and change the sheets on my bed. The following day I would always awake with one of these flares and they would last usually 3 – 5 days. After some time I discovered that the ‘clean’ sheets that were going on my bed were actually poison to me. My cleaner would wash my dirty sheets and then hang them in my garage to dry. They would stay there until he returned 2 weeks later. The garage is dark, damp with no ventilation. During the time the sheets hung there they were growing mold. The clean/moldy sheets would then go on my bed and after sleeping on them I’d be toxic again the next day. I bought myself a clothes dryer and the problem was fixed, clean sheets would equal no crash for me. It was great.

During the last 3 years I have had similar type episodes but they would last weeks and would be much worse much more debilitating. Similarly it turned out that these episodes were also due to a build up of mycotoxins. What kind I am not entirely sure, there is no visible mold in my home but it is water damaged from a water pipe that leaked severely and went undetected for a year. What I have found is that if my cleaner doesn't come on one occasion then the month long wait is too long. Whatever ‘it’ is it starts building up and I get sick. This last flare was a perfect example. My cleaner didn't come and I started to spiral down after a week until I couldn't move from bed, couldn't use laptop or have TV on. Horribly ill. My parents came and cleaned like only your loving parents would do. They vacuumed, scrubbed, mopped … and within hours I started to feel better. I went to bed that night and realized that they had vacuumed my bedroom carpets and dust and whatever else was disturbed. The room smelled musty and when I woke in the morning I was even sicker!  I opened all the windows and left the fan on to air out the dust and within a day I was hugely improved. Within two days I was almost back to my version of normal. Fantastic!

Never underestimate how sick dirt/dust.mold.micotoxins or whatever can make you. Learning this lesson has been a big help to me. Of course keeping my place clean doesn’t change the fact that I have ME and will always be ill, but it’s great to know that this is a big trigger for me. So if you haven’t seriously made an effort in this department it’s worth a go.

A quick sidenote before I go …..
My friend Vicki who is a quadriplegic is about to have her government funding cut and wont be able to pay for everything she needs to live, including her carers. Me and some other friends have been trying to raise some money to help Vicki and we found a great opportunity to win her $5000. If you are an Australian resident then PLEASE vote for Vicki and help her win! The link to vote is here - http://sunsuperdreams.com.au/dream/view/vicki-can-no-longer-afford-to-care-for-herself

Also if you are on facbook you can show your support by liking the page I set up for her https://www.facebook.com/HelpingVicki

And the page to donate if you have a few spare $$$ (don’t be afraid to donate a tiny amount, it ALL adds up and will help Vicki) - http://www.helpingvicki.com/

Thank YOU !!

Friday, September 21, 2012

Fear and other fun stuff



This disease is fucked. I am tired of feeling angry at the world and tired of being terrified to wake up each morning.

How would you feel if your entire life vanished before your eyes and the only thing you could see in the future was a big scary void. The world that you used to participate in is still happily spinning around while for you all it now consists of is 4 very familiar walls day in and day out. Being in solitary confinement in prison would be easier to deal with. The only difference is that in prison you don’t feel devastatingly unwell every second of every day and you know that come tomorrow you will still have a roof over your head and someone will arrive with food for you.

The last few weeks I have been in a scary relapse. I am back to not being able to shower or bathe or prepare any meals. Standing is very difficult, moving is painful and sitting up makes me feel dizzy and nauseas. Most people have a fear of death. I no longer have any fear of dying but my fear of living is enormous. Every night I go to bed and wonder if tomorrow will be the day that I can no longer stand at all, or if my reflex to swallow will be gone and I will need to be tube fed, or if I wont have the strength to lift a glass of water to my mouth.

Imagine if this was your life and when you talked to Doctors about it all they could say is they have no idea what is happening and that you should get some rest.

You’d probably be a little pissed off and more than a little terrified.

Monday, July 30, 2012

Oxygen update



Since my last post about oxygen therapy I have had many people asking for an update. So here goes …

My initial goal was to follow Dr Jamie’s suggested protocol of 30 minutes a day at a flow rate of 10 litres per minute using a non rebreather mask. This is supposed to be the closest you can get to using a hyperbaric chamber. When I tried this method I knew instantly that it was way to much for me and so I only did 5 minutes. Within a few minutes of stopping I found that I was having trouble breathing. There seemed to be lots of theories about why this occurred floating around, such as the lack of CO2 that using a non rebreather mask causes can interfere with the bodies natural breathing mechanism, or that it was an allergic reaction to the plastic in the mask, or that it was some kind of asthma induced by the oxygen. I haven’t been able to work out the reason so instead I have spent the last 2 months experimenting and trying to find a method that works for me.

A more common problem which I also encountered was one of overdoing it. It’s a fine line between not enough oxygen to do anything and too much which causes a typical PENE (post exertional neuroimmune exhaustion) type crash. For the last 3 weeks I have been settled on doing just 5 minutes per day at 10L/min without a mask. Instead of the mask I just hold the tube right in front of my mouth so I wouldn’t be getting just pure oxygen but this seems to work for me.

In terms of benefits I am finding that if I schedule the oxygen for after I do something each day then it stops the PENE that I would usually get. For example, having a shower will usually cause me to feel crashed the following day, but if I do my 5 minutes oxygen immediately after the shower then I don’t get the crash. So it is definitely worth the effort for me. Using oxygen the way Dr Jamie suggests should in theory help the body repair over the long term. Because I am using such small amounts I am not sure that will occur, but I must say that I am optimistic about it and over time I may be able to slowly increase the amount that I use.

So the oxygen therapy gets a thumbs up from me. I have tried many many things and most have either done nothing or made me worse, so this one is a keeper. I think the downside for a lot of people would be the cost. Oxygen concentrators are expensive to hire and to buy. I was really lucky to get one dirt cheap on ebay. 

PS, the fab elephant oxygen mask was created by Tom Banwell and you can visit his website here - http://tombanwell.blogspot.com.au/2011/01/why-i-make-steampunk-gas-masks.html

Tuesday, June 5, 2012

Oxygen

Its been quite a while since I posted. I have been taking stock and deciding where to go from here … again! After returning home from hospital in March my health improved quite significantly. I am still housebound but am now making many of my own meals, showering every two days, spending time on my laptop and just feeling more comfortable. Having said that, I have reached a plateau at this point. Why did I improve? I wont know for sure but what I can tell you is that while in hospital it was discovered that I had a pre-cancerous nodule on my thyroid. Despite my being adamant that I was suffering thyroid type symptoms the Endocrinologist said that all my thyroid test results were normal and the nodule would NOT have been causing any symptoms at all. Even though he said my test results were normal they weren’t really, my T3 was at the very top of the normal range and my Reverse T3 was sky high. He told me that Reverese T3 is meaningless and in 30 years of practice he has never once ordered that test for a patient. (I had ordered it prior to going in to hospital via my regular GP). Anyway, so half my thyroid was removed and that is the only real reason I can come up with for my improvement.

 So, now …. I am still consulting with my regular GP but have decided to get another perspective and so have begun consulting via skype with Dr Jamie in Hawaii. She has a fresh set of ideas and has already put me on a trial of Oxygen therapy. I should clarify that, Jamie is not in a position to prescribe anything unless you are in the state and country where she is licensed to practice. Jamie is giving her suggestions to my GP here in Australia and if he has no objection then he will write me the prescription. I have been on oxygen for 2 weeks, with mixed results. Jamie has recommended half hour at a flow rate of 10 litres per min with a non rebreather mask. This type of mask has a bag attached and a one way valve so it prevents you breathing anything other than oxygen. This in theory is the closest thing you can get to using hyperbaric at home. I have so far not been able to tolerate oxygen at such a high flow rate and will be talking to Dr Jamie in a couple of days more about this. I find that it makes me very very spacey and I have difficulty breathing afterwards, even if I only use the oxygen for 5 minutes rather than half an hour.

 What has been successful for me is using it for 20 minutes at only 2 litres per minutes flow rate and with a nasal cannula. I find if I use it this way straight after an activity (such as a shower), then the Post Exertional Malaise I would normally get is lessened quite noticeably. Also if I use it before bed I sleep better and am generally a little brighter in the morning. But .. if I use it this way 2 days in a row then I tend to crash. Perhaps it’s a reaction to the plastic mask/cannula or something in the oxygen itself? I do hope I can work this out because the oxygen is the first thing I have tried in a long time that I can see gives me instant results. I know Dr Jamie has a few other tricks in her bag so I am hoping that this year will be a better one for me.

 I’d be keen to hear from anyone else about their experiences with oxygen.

Saturday, April 7, 2012

More shit I'm afraid


Firstly HAPPY EASTER everyone, I hope you are all enjoying time with your families or friends.

Now, on to business …. As sick as I am and as sick as I have been there is someone in my life who is sicker. My friend Amara also has ME/CFS and despite her cheery online presence she is in a very bad way right now. Amara has been sick for a long time and has nearly died on more than one occasion. Her latest symptom from hell is called dystonia. It’s a neurological symptom which has devastating effects on the central nervous system. Having been ill for so long Amara’s financial situation is also pretty dire which is devastating in it’s own way because she desperately need a whole bunch of new tests which will run into the thousands. She cannot afford to wait the many months that it will take to save the money required. Some of her friends and family have set up a facebook group called Aid for Amara to try and raise some dollars for her. Its going great guns but more money is needed.

ANY kind of donation will be a help so if you have a couple of dollars left after Easter then PLEASE pass them on to Amara. You can donate directly here - http://www.giveforward.com/aid4amara

If you are wondering why am I making such a fuss the please watch this short video of Amara, and make sure you watch it until the end.



If I can afford to help Amara then you can afford to give something too … Please don’t be a scrooge, show some compassion and lend a hand.

Thursday, March 29, 2012

Holiday!


It’s been quite a while since I posted and that’s because I have been holidaying down a big dark hole. Actually I have been in hospital. Since the beginning of this year I have just been going downhill in all sorts of ways with no idea why. I was experiencing a new kind of abdominal pain which to me resembled gall or pancreas problems and I was also having weird fevers, chills, weight loss, extra low body temperature and some other stuff which looked like thyroid issues. My GP ran some blood tests which showed some liver inflammation and high T4 and reverse T3 (thyroid levels). I felt so ill that I asked him if he could try to find a way to get me admitted to hospital for some proper tests. He contacted my old gastroenterologist who agreed to admit me to a private hospital. I was so relieved that I was getting access to proper investigation, but once the holiday began my enthusiasm quickly evaporated.

I had more tests and scans than I had hoped for and for that I am very grateful, however it was all conducted in what seemed like a whirlwind which left me feeling increasingly ill. Hospital is NOT a place to get rest. Your supposed rest is constantly interrupted by a steady stream of nurses checking obs, Dr’s consulting, cleaners cleaning and caterers bringing meals. By the end of my stay I was under the care of 6 different Dr’s who each would visit me daily for a chat … that is a LOT of conversation for someone who is so ill. At home I would usually only speak for a couple of minutes each day but in hospital it would have been a couple of hours each day. Exhausting … and of course all the tests and various sedations required etc were a massive assault on their own.

The outcome was no clue for the abdominal pain which sucks because now I am home it’s even worse and I still don’t know what it is, but, on a positive note they discovered a pre-cancerous nodule on my thyroid. This never would have been picked up if I hadn’t been in hospital and you can only imagine what would have happened if it had been left unchecked. The treatment was simply to remove half of my thyroid which was a quick and easy minimally invasive operation, however the general aesthetic totally knocked me for a six. I didn’t get the usual kind of crash I that I had expected but instead felt extremely weak and tired, not ‘fatigued’ in the usual way but tired. It’s been a few weeks since surgery and I am still really struggling … recovery is going to take some time. The downside to the thyroid nodule is that the Dr’s were adamant that it would have been causing NO symptoms at all and so what ever had been making me feel so rotten had nothing to do with my thyroid. I am not convinced that they were right because although I am still really ill the symptoms which I thought were thyroid have largely disappeared since surgery. Coincidence? I don’t know. Time will tell I guess.

It’s so nice to be home and be able to just lay in bed all day if I need to without being forced to engage with others … holidays are often over rated !

Wednesday, January 18, 2012

Shit


WARNING! This post is going to be nothing other than a BIG whinge.

December was a great month for me, the best I had had in a long time. I had begun eliminating toxins as I mentioned in my last post and I had also started on the ‘Wahls’ diet with great success. I had more energy, clarity, better sleep, less inflammation and even my POTS was significantly improved … and then ….. the same thing happened that ALWAYS happens when ever I try anything new … I had a massive crash again.

I am so ANGRY ANGRY ANGRY that I can’t even put it into words. I did nothing wrong at all … haven’t been overdoing it in anyway … just woke up one morning feeling so ill that I spent the day in bed wondering if I were going to die. I know this feeling is familiar to many of you. It sucks! So, for the last two weeks I have been badly crashed and have been trying to work out what went wrong? I thought maybe the diet had caused too many toxins to mobilize and I had poisoned myself, which is highly likely. I also thought the liver inflammation/hepatitis that I had a few months ago might be back, also quite likely. And, maybe it’s just total coincidence and the stupid disease has just decided to have another dig at me!

I feel like I have really tried my hardest to stay positive and be proactive in trying to find ways forward, but everything I try ends in disaster, and I am just so tired now. I’m tired of trying, I am tired of staying positive and putting on a happy face. I feel like shit, the whole situation is shit. I’m severely ill, I’m alone, I am middle aged and relying on my parents (who have been incredible) and friend Michael to take care of my basic needs. It’s like being in solitary confinement in jail for years on end and every few days a prison guard come in and gives you a beating. But I did nothing wrong, I don’t deserve to be here. To top it off, the only people that care in any way are my immediate family and others who are in the same boat …. No one else gives a toss about any of us, not government or doctors or even those who used to be our friends before we became ill.

ANGRY!!!!!!!!!!!!!!!!!!!!!!!!!

For the first time I have no plan and no idea how to move forward and to be honest for the moment I don’t want to … I just want to tread water for a while and have a break. Wouldn’t it be nice to be able to have break??!!

Monday, January 2, 2012

Reducing toxic load


I have been doing a lot of thinking about what things are possibly affecting me in a negative way and what kind of positive changes I can make. It‘s become clear to me that I am overloaded with all sorts of toxins and the number one step is to avoid the offending substances where possible, the number two step is to detox whatever I can. So here is what I have come up with:

I know I have a really heavy toxic load from Solvents. I have done lots of reading about this and it seems the only real thing I can do is to slowly detox through diet. For someone not as sick as me saunas or FIR saunas and exercise would also help. There are some supplements such as Glycene, Taurine and Cysteine which help but I’d prefer to try and get as much as I can with food because at this point in time I tend to react to any new medications including supplements.

I have amalgam fillings in my mouth, which means mercury. Nothing I can do about this now but maybe in the future if I am well enough to get to a dentist I could have them replaced.

Food allergy/intolerances. I have been gluten free, dairy free and low sugar for quite some time but I still have gut issues. I have managed to clear up helicobactor pylori, bacterial overgrowth and candida .. but still something odd is going on. I believe that it’s actually part of the autonomic dysfunction that goes along with ME/CFS. So if I can improve my overall health then maybe this will also improve.

I drink water out of the tap which has fluoride, chlorine and other nasties in it. So, I have just ordered a good quality water filter. I never really thought much about this one but I recently heard someone say that because we are made up mostly of water it’s important that the quality of water we put in our bodies is clear from nasties … makes perfect sense!

Pesticides. I don’t eat organic meat, fruit and veggies because they are sooo expensive, but I am going to try and stuffle my budget a little so I can start to do this where possible. Also I bought some seeds for veggies that are easy to grow in pots, so maybe I can produce some safe veggies at home.

Chemicals at home. I have already taken care of this as much as I can. No chemical cleaning products or paints etc sitting around anywhere. My cleaner just uses vinegar and bicard soda. I assume there are chemicals in my toothpaste that I could eliminate, but one thing at a time …

I don’t think I have any mould anywhere at home, so that is taken care of.

Aside from taking these steps to clean myself up I have been looking REALLY closely at diet so I can start to eat in a way that will promote elimination of free radicals and will support mitochondrial, brain and CNS function I have been reading Terry Wahls book ‘Minding My Mitochondria’. It’s a very interesting and insightful read and I will talk about this in my next post.