Wednesday, December 8, 2010

Feeling truely blessed.


This is a hard post to write, I don’t really know where to begin. Today is the 10 year anniversary of my partner Roberts’s death. I can’t believe 10 years have passed, we were together for 10 years and yet the two spans of time in no way feel equal. Those years with Robert were undeniably the best years of my life and the memories bring me such joy.

When we first met I was 22, singing in a band and wearing pink fur hotpants. He was 32, working as a senior consultant in a town planning firm and wearing a suit and tie. We were worlds apart in pretty much all aspects of our lives and yet there was an instant connection and attraction that lead us into the most wonderful relationship. It was the huge differences that really made it work for us. Robert was stable and smart, down to earth and full of honesty and compassion whereas I was spontaneous and a risk taker. The window we provided each other into different world was fascinating for both of us and over the years we both learnt a great deal about life and love. We were the sort of couple that were joined at the hip. We usually did everything together, sleeping in on Sundays, travelling the world, working out at the gym, community work and of course the mundane stuff like grocery shopping and cleaning the house. In 10 years we had only one argument …. I really couldn’t dream of a more perfect partner and relationship.

It’s 10 years down the track now and I am the age Robert was when he died, and I am sick. The last year has been extremely difficult healthwise but there is something about my past with Robert that has really given me the strength to get through each day. He may no longer be here on this planet but he is still influencing the way I think and the way I respond to everything around me. I cannot imagine how I would be coping with my illness had he not been a part of my life for all those years. It’s odd, I can’t even explain all of this to myself but in some way Robert is making this a much easier road for me to travel.

I feel truly blessed for the time I had with him and for his memory which is with me everyday.

The photo was the last picture I ever took of him. It was taken the day before he died and it sums up his cheeky personality perfectly. This is how I remember him.

Thursday, November 18, 2010

Loss & Re-Inventing


I was gonna talk about my recent crash and treatment again today but there is something more pressing.
I read a post that Cusp wrote this morning (check it out here) and it really resonated with me. This illness is so isolating for everyone. If you live alone then you rarely see other people and if you don’t live alone you spend a lot of your time watching your housemates leave and go off and do things in the real world while you get left behind. Over time many of us slowly lose everything that had been important to us in our former life. This week I gave my car away. I have not been able to drive since January and having a car rotting in your garage doesn’t make much sense. My brothers car died last week and so I did the sensible thing and offered him mine. If it was the sensible thing then why did it hurt so much when I watched it disappear out of my driveway? It’s a bit like catching a glimpse of yourself in the mirror and for a second you think ‘who the fuck was that’, ‘,oh, it’s me’. That undeniable reality smacks you upside the head. It is possible that I will be able to drive again one day, but it’s also possible that I will take a trip into space with Richard Branson …. possible, yes, but better not make that assumption.

I was thinking about what giving the car away meant and I realised that I have actually given a lot of stuff away recently, clothes, CD’s, just stuff in general and I had a lightbulb moment. I did the same thing years ago after my partner died. At that time I got rid virtually everything I owned, furniture, clothes, photos, everything and it was a devastating experience. I understand now that it’s part of the process of re-inventing yourself in order to survive. The person you were just doesn’t exist in the same form anymore and so you must shed some layers in order to get to your authentic self and start again within your new parameters. Knowing that this is what’s happening does make it easier. It’s so easy to just feel totally out of control when you are faced with loss of any kind, it’s nice to understand what is happening.

The crappy thing is that just because you understand the process of loss doesn’t mean that you can stop it. For us it runs deep and it’s ongoing. We lose our health, our jobs, our homes, our friends, sometimes family, our future, our dreams, sense of purpose …. The list is endless.

The good news is that if you are able to stop fighting against it then you can actually learn and gain some very cool stuff. Barry talks about this on his blog – here. So that is my goal at the moment, I’m looking around at my environment and taking a good look at myself and seeing what new and exciting possibilities exist.

Saturday, November 6, 2010

Alien



Sorry to say but its back to the whiney complaining version of me today. About two weeks ago I finished the treatment I was taking to get rid of the Helicobacter Pylori that I had recently discovered. Helicobacter causes stomach ulcers and is known also to be implicated in chronic illness of many types. The treatment is a week long triple cocktail and by the last couple of days my gut problems were fading away and I was feeling pretty great. But … within a few days my symptoms of diarrhea, burning pain and all over ‘hit by a truck’ feeling were back. During this time I had also had a parasite – Blastocystis. Anyway, after another week of suffering I got re-tested to see if the parasite was still there. I didn’t get re-tested to see if the Helicobacter was gone because you have to wait four weeks before you re-tested for that. So,the parasite was gone but I was still feeling TERRIBLE.
I emailed my Dr and explained how I was feeling and said that I figured the Helicobacter must still be there. My Dr emailed me back saying he will write me a script for Nexium which is a drug that inhibits stomach acid. The theory is that just because the Helicobacter is gone doesn’t mean that the damage it did is gone. It may have caused an ulcer or at the very least inflammation. Stomach acid would certainly be irritating that so the Nexium should reduce the acid so that the damaged tissue can heal. Sounds great in theory but HOW BLOODY LONG is that gonna take. I have been taking the Nexium for 5 days and I am still in lots of pain and just feel shit really. The diarrhea had stopped but I wouldn’t say things are normal in that department. I do think that fixing my gut is not going to be a quick and easy process. I am certain that there are other things going on there that also need to be addressed. I still have the chronic pancreatitis issue and in the last 6 – 8 weeks I have noticed a large lump in what I think would be my ascending colon. This could be a number of things … tumour – possible but unlikely because the lump comes and goes each day, it could be a spot where icky bacteria builds up each day – quite possible, it could just be a stretched bit where stuff getting digested collects – also possible, or lastly it’s a hideous ALIEN waiting to burst out of my stomach and run a muck aaaaaaaahhhhhhhh!!! Hahahaha.
I have an appointment with my Dr in a couple of days and I really want to know that this is either working or not working because he is going on holidays shortly, so I am gonna be on my own for a bit.

Now for the good news !!! Um ….. I won $4 on a scratchy ticket last week, whoohoo!!!!

Tuesday, November 2, 2010

Unexpected visitor


A couple of nights ago I heard the sounds of things being knocked over outside my front door. I live in an apartment on the top floor. There are 3 flights of stairs in an enclosed stairwell up to my door. When I heard these noises I thought someone was out there getting up to some sort of mischief. I dragged myself off the couch and over to the door, looked through the peephole but couldn't see anything. I could still hear something going on out there so I opened the door to find an 8 foot diamond python fossicking through the random junk that I have sitting out there. Eeek! not what I was expecting.
It was 10.30 at night and it was far from being one of my better days so I was not in any fit state to deal with this sort of thing. I had to do something though! I had a look online to try and find an after hours snake handler. A couple were listed in my area but none answered their phones. By this time I was feeling really exhausted and ill. I called my Dad and he called a snake handler he had used before and she agreed to come and remove the snake. In the meantime, without my knowledge the snake made its way down the stairs and sat in front of my downstairs neighbours door just as she was about to leave for work. I heard an almighty scream followed by lots of hysterical swearing!
About half an hour later the snake lady came and rescued us hahaha.
Not a pleasant story but a welcome distraction from my current state of dreadful health. I am still not much better but wont ruin this fun post with that nonsense!!

Thursday, October 21, 2010

Unhappy Tummy


If you have read my recent previous posts you’d know that I have been having some real gut problems over the last couple of months. This all came to a head a week ago. I had my regular appointment with my Dr and while I was there I had some kind of attack or something. I suddenly felt like I was going to faint, pins and needles, sweating etc … it was yucky. My blood pressure was fine and so was my blood sugar, so don’t really know what exactly happened. My Dr did order some more gut related tests for me though. When I got home I felt totally drained and nauseous and went to bed. That was a week ago and I have been virtually bed ridden since, I didn’t even manage a shower until today.

The tests I had were for Helicobacter, pancreatic function and parasites. When the test results came back I was positive for all of them. The inflamed pancreas was no surprise because this has been a chronic issue for me for the last 3 years. I have seen several gastroenterologists and had scans, xrays, colonoscopy, endoscopy and although the results always show an inflamed pancreas all the Dr’s are at a loss to explain why and they all have said go away for 6 months and see if it settles down. Clearly it hasn’t.

The parasite is Blastocystis. I had it once about 2 years ago before I had CFS and it made me feel like death even then so it must be having a big influence on my current level of functionality.

Helicobacter is something that I really knew nothing about other than that it was what causes stomach ulcers. Apparently it is known for causing extreme fatigue and muscle weakness in some people. It has also been linked to migraines, food intolerance and of lots of other chronic illnesses. So, I am extremely pleased that we discovered I had this. While I am not getting my hopes up it is possible that once I get rid of this I may improve significantly and maybe not have to spend 24hrs a day in my apartment. How exciting would that be!!!!

I have today started treatment for the Helicobacter, it’s a combination of antibiotics and acid lowering medication that you take for 7 days. Once this s sorted then I can treat the Blastocystis parasite. The pancreas issue I think I will just have to live with. I have noticed that it usually only gives me trouble when I have other gut stuff going on, I guess it gets irritated or something. So maybe it will just settle anyway once I clear up these other problems.

I still feel really really unwell, totally crashed, in fact I am sleeping around 20 hours a day!!! I know, unbelievable. Hopefully in a few weeks my gut will be happier and the rest of my body will perk up. Just the thought of that is really making me grin :P

If anyone else has had any experience with any of these things please leave me a comment and let me know your experience.

Saturday, October 9, 2010

Grow your own Mushrooms


I am still right at the beginning of my treatment for Candida. I have been banging on about this for weeks and week so sorry for yet another post about it. I am having some issues. As time goes on I am seeing just how bad this Candida/yeast problem is for me. To recap quickly I started taking Nystatin which is an antifungal medication probably 2 months ago, It made me soooo sick because of the die off that I had to stop taking it within days. It was just way to harsh for my poor little body to deal with. So after consulting with my Doctor I decided the best course of action was to go on a strict anti Candida diet for a few weeks so that it could start to die off naturally in it’s own time.
I have been on that diet now for maybe a month and I have noticed 2 main things. My energy levels have been running at close to zero, my guess is that with no sugar in my diet my fuel reserves are just not getting replenished. The other thing is that I can visibly see and feel Candida die off happening. It’s like the dying yeast is trying to escape my body anyway it can, and it is now evident that it is spread throughout my body not just in the gut. I have a sinus infection that will not settle, I have fungus leaching out through my toe nails (gross) and I have dozens of huge pimples appearing all over my body, oh and lots of itching, especially on my back.
I saw my Doctor again last week and we decided it was time to try the Nystatin again and start with a low dose. A week ago I took one 500 000 unit capsule and the next day I felt fluey and upset bloated stomach but not too bad. I waited one more day and then took one more capsule and have just felt like death ever since. The die off is so extreme I cannot possibly continue with the Nystatin but it has highlighted to me just how important it is that I get this Candida out of my body.
I am trying to stay positive but when I feel so sick and have such overwhelming fatigue I can’t help but slide into that dark place. I am usually pretty good at letting myself feel it for a short time and then pulling myself out of it. I am having trouble this time because if feels like it has been literally months now since I have had an ok day.
I think the answer is to ditch the Nystatin and try one of the natural alternatives that work slower and should be more gentle on the body. The problem with that is that it will most likely take a lot longer to get rid of the Candida so I will be feeling like crap for longer …. But there is no way I can tolerate the extreme die off symptoms.

I am sick of complaining …. One of these days I will post something cheerful and uplifting, I promise :)

Friday, September 24, 2010

Tax return & Testing


I got my tax return this week. Because I worked only 5 months last year before I got really sick I was able to get most f the tax I had paid back - $3000. I have decide to spend all or as much as needed on getting more tests done. There are zillions of things to test for and so this week I am trying to work out what tests I think are important for me to have and which ones are actually possible to get. I was keen to get tested for XMRV, I know it’s early days in terms of the available testing protocols etc but it might at least let me stop thinking about if XMRV is relevant to me. The problem is I can’t find a way to get tested from Australia. I emailed VIP Dx and they said that they are not able to offer testing to people in Australia. I did see on a forum somewhere though that a person in New Zealand had been tested through VIP Dx, so …..? If anyone has any info on how to get tested then please let me know.

I am also thinking I’d like to get a SPECT scan done which tests for blood flow to and around the brain. I know Dr Hyde believes that if one of the arteries that carries blood to your brain (I think you have 3?) is blocked this alone can be responsible for CFS in some people.

I know I have some gut problems and I personally believe that whatever those issues are they contribute largely to my symptoms. If I have a day where I feel constipated for example then my malaise and muscle pain and flue like symptoms are through the roof, so that is something that really needs further exploration. I am currently on a Candida diet and I can see that something’s happening due to that. I have come out in big pimple type things all over my body, not very pretty at the moment but it shows that toxins are escaping through my skin which is a gooood thing! Anyway, so I am thinking I also should get some extensive food allergy testing done which is really really expensive but at least I can then tick that off the list. I know I have food allergy stuff, I have had Celiacs for a long time and am lactose intolerant. My stomach feels uncomfortable or weird or painful every single day in varying degrees so I wouldn’t be surprised if it’s food related.

I have just had some general tests done for bacterial stuff and I was positive for chlamydia pneumoniae. I also was tested for Lyme and Ricketsia but I wont get those results till this week. I would like to get further testing in this area done.

I did try to get an MRI of my brain done a few months ago but the EMR made me so dizzy and sick we had to stop. I am not sure if there is much point in getting it done anyway? I guess it would rule out a tumour?

Is there anything else that anyone can think of that’s important?? It’s such a minefield I know!

In the meantime my plan is to continue with the anti Candida stuff and sit tight. I don’t want to make any real treatment plans until I have all these tests sorted. I don’t want to go down the wrong path. Oh and I meant to say that I got myself some waste high compression stockings for my POTS and they actually do help. I was able to stand for 45 minutes in the kitchen the other day and cook. My legs gave out at that point and I was starting to feel dizzy but previously I could only stand for about 5 minutes maximum. The problem with standing for 45 minutes was I got 2 days of payback because of the stress on my muscles, hahaha you can’t win!

If after all this testing if I have any money left from my tax return I might get either some botox or a boob job, what do you think? Hahahaha!

Thursday, September 16, 2010

Be your own detective


This is my mantra, ‘be your own detective’. Even if you have a fantastic Dr like I do you have to recognize how limiting a trip o he Dr can be. Usually they give standard 10-15 minute appointments and they see dozens of patients in a day. Just because you are really sick and have been seeing the same Dr for years doesn’t mean you can expect them to remember that a month ago you started taking CoQ10 and you stopped talking the sleeping medication. Of course all this info is right there on the screen in front of them but if you want them to help you then you have to help them!

This illness is a puzzle and chances are you spend way more time thinking about what is wrong with you than your Dr does. I think that if you help them with information then they have the tools to help sort things out, but if you want them to do all the work you will be sick forever. Your choice!

I see my Dr every 2 weeks. I always take a list of questions which are based on research I have done that I think could apply to me. This week it was about coming to the conclusion that I really do have a bad candida problem. I laid out why I thought this was the case and what I though the best approach for me would be. My Dr asked a few questions and agreed with me, he asked more questions and then slightly re-directed my approach. Fantastic result. If I had just gone in and said I feel bloated and blah blah blah he probably wouldn’t have been able to diagnose candida in a 15 minute appointment, but I had had 2 weeks to think about it and try to work it out.

The other thing I always do when I first go in is to quickly refresh his memory about where we are at. This week I said, I had been taking the antibiotics you prescribed 3 weeks ago and this is what happened, blah blah blah. It seems to save a lot of time as opposed to him trying to read back over my chart while I am yapping away at him.

The thing I am planning on doing this week is to lay out all my test results from the last year onto a spread sheet so I can easily see what I have been tested for, what was positive or negative or abnormal. Then I can perhaps see more clearly what other tests I need to get done and also maybe see a pattern of what is going on.

Seems like common sense but for some reason we just tend to leave this stuff in the Dr’s hands and I think it’s a huge mistake … they don’t have the time to put it all together and there is no reason we cant do it ourselves. The internet can give you all the answers if you just bother to have a look.

I have noticed from talking to lots of you and also people on facebook that most people don’t often see a Dr. No wonder most of us never get better!!!

I Know that the big picture is incredibly complex and so getting totally well is unlikely but I also know most of us have multiple infections and sensitivities to things. Surely we can work out why some of these are occurring and fix those specific bits and pieces? That has got to improve things!!

One last thing quickly. Going back to a previous post. My Holter tape results show my heart rate varied between 55 and 200 beats per minutes as a result of POTS. My echocardiogram showed a tiny whole in the mitral valve but nothing to be concerned about. So, regarding the POTS I have a choice of medications I can try but …. I have found something else useful instead. I googled all the medications I was on to see if any of those could be making the POTS worse and what do you know .. one of them was shown to cause a drop in blood pressure when standing. I mentioned this to my Dr and he knew that was the case but had forgotten I was even on that medication because he prescribed it long before I had any POTS issues … See, be your own detective. I have now stopped that medication and the POTS isn’t gone but is significantly improved. YAH!!!!!!!

Monday, September 13, 2010

Feeling like a doll that's been stepped on


Oops!

It seems I have really stuffed up badly and paid the price. I have learnt just how important it is to have all the bits of the puzzle before you set off on a journey. When I decided to go back on the antibiotics my Dr said that I would need to also go on probiotics and antifungal medication because the antibiotics would be killing off all the bacteria in my guy and there would be nothing to fight of Candida. At the time I was worried about herx from antibiotics so I decided I would postpone the antifungal medication for a few weeks until my body was ready. BIG mistake! I am such a good researcher and yet I stupidly overlooked the seriousness of Candida within the equation. I hadn’t realised just how damaging Candida can be in it’s own right. It can in fact cause many of the usual CFS/ME symptoms because it can overtime grow all through your body. Icky stuff.

So, I started the antibiotics about a month ago and had a few fluey yucky days and then started to feel significantly better. Big smile  I waited 2 weeks and started the antifungal and once again felt like I was going to die. Several days totally bedbound and a few more days feeling like I had severe food poisoning. Wow, this was a major herx. It made me think that perhaps I already had a Candida problem big time. I stopped taking the antifungals because I felt it was at that point dangerous but the symptoms continued for another 5 days. I then managed to do some research and came to the conclusion that I needed to also stop the antibiotics because they were now feeding the Candida. The day after I stopped the antibiotics I felt hugely better and continued to improve over the following couple of days.

So what now? Um …… I do think I was on the right track but stuffed up because I didn’t have all the info I needed first. I did things the wrong way round. My new plan is to address the Candida issue first and then go back to antibiotics. Because of the severity of his recent herx I need to start slowly so I have adjusted my diet so the Candida starts to die of naturally. I have cut out as much sugar as possible and bad carbs and anything yeasty or fungal. I have also started eating lots of garlic, ginger, chilli and coconut which are all things shown to kill Candida. I plan on doing this for a week or two and then go back onto a very low dose of the antifungal medication and increase that as I can tolerate. Once I have done all of this for a while I can get back to the antibiotics.

I will be seeing my Dr in a couple of days so will discuss all of this with him just in case he has a better idea etc.

Oh boy life can be exciting!

Oh, I did get the results from my Holter test and Echocardiogram, I will do a post about that shortly .... nothing exciting to tell ...

Thursday, September 2, 2010

Plug me in baby!


I have a few things to mention on this post. My brain is a bit frazzled again today so sorry if this is incoherent.

Firstly, I am having some heart related tests done to gain some more insight into my POTS issue so we can work out the best way to try and treat it. Last week I did a 24 hour holter test. This is where they attach electrode type things all over you which read heart rate and blood pressure over a 24 hour period. The point of this is to see how high and low my readings are within a day. There is no point prescribing mediation to raise my blood pressure if in fact it is already high at certain times of day so it’s important to get this info. It may sound like I am being overly cautious but I have already had one really bad medication experience using beta blockers to try and help the POTS. Next week I am going for an echocardiogram just to make sure there is nothing else going on which could be an influence. When I saw the POTS specialist for my initial consultation he said it sounded like I had a mitral heart valve defect, so it will be good to know for sure.

Secondly, I am advancing in my trial of antibiotics. I have been on them a few weeks and I do believe there is positive change occurring. I seem to have a couple days where I feel really good by my standards and then a couple of days of the flu like stuff, so this would suggest a herxing of bacteria. Two days ago I started taking Nystatin which is an antifungal medication. If you are taking antibiotics long term it’s a good idea to also take the antifungal because the antibiotics kill all the bacteria in your gut and without thriving good bacteria candida/yeast will flourish and that’s a bad thing. Of course I am also taking a good probiotic to help replenish the good bacteria.

Regarding candida I do think I probably had a problem with this anyway which needed addressing. There is a good questionnaire on Dr Greg Emersons site which will help you work out if you have this problem. He also has other useful questionnaires too. There is also a article explaining just what candida can do to you if you have CFS or FM, check that out here, it’s well worth a read.

Lastly I have another link to share if you are interested in probiotics. Melinda on facebook passed this onto me. Here and more here.

Thursday, August 19, 2010

Antibiotics


At the beginning of this year I was on anti biotics for 2 months. I had been suffering with an ongoing pancreatitis issue and further investigation found a gut bacterial overgrowth issue. This on top of my Celiacs could have been part of the reason that I crashed into full blown CFS. Anyway, while on antibiotics I experienced gradual but significant improvement of all my CFS symptoms as well as the gut bacteria problem. Since stopping the antibiotics I have slowly worsened and experienced new dramas with the onset of POTS and OI.

After talking to my Dr and doing my own research I figured that perhaps I did infact have other bacterial issues that were either causing or impacting upon the CFS. My Dad showed me some articles about the Marshal Protocol which was really interesting. This protocol suggests that for some people their CFS is bacterial based and it addresses how to deal with it. This protocol specifically looks at Mycoplasma type bacteria. I was quite convinced; however I tested negative for Mycoplasma so this particular protocol would hypothetically be of no use to me. My Dr did however email this link for the CPN protocol which is similar in theory but works on a different type of bacteria. I haven’t been tested for this type because there is only one lab in Australia which do the test and when I enquired some time ago they said they were currently not doing it but probably would be again in the future. So ….. it is a possibility. My Dr also said he has had several patients follow the CPN protocol and seen significant improvement. The downside is that most of the people using the protocol are people with MS not CFS and they seem to have lots of trouble with herx or detox etc. Apparently most CFS patients using it have less trouble.

My current plan is to go back on the same antibiotics which I used at the beginning of the year for a few weeks as an experiment and see what happens. I actually started them a week ago and already I have improved. The POTS and OI is just the same but all my other CFS symptoms have been better and I am thankful for that. If I continue to improve over the next 2 weeks then my Dr and I will consider looking more closely that these protocols and similar ones.

Has anyone had experience with these or with antibiotics in general??

Thursday, August 5, 2010

These 4 Walls


My thoughts are a bit scattered today, most days in fact hahaha!
Firstly I went and saw the POTS specialist a few days ago. He didn’t really have a lot to ad to what I already knew and what my regular Dr had said. He did confirm the diagnosis without making me do the icky tilt table test which is good, I was dreading the thought of having to do that. For anyone who doesn’t know about it they basically strap you to a table and tilt it upright as though you are standing. They leave you there until either you pass out or you reach 45 minutes. Either outcome sounds awful for someone with CFS. Anyway back to the point ….. the specialist basically said I should continue with the Saline infusions if that is helping (it is helping), I could also try FlorineF with salt and water which would also work well with the Saline infusions. If that doesn’t help then I could try drugs like Mitodrine, which helps some people but is expensive here in Australia. At this point in time I have decided to just stick with the Saline for a few more weeks and then re-evaluate. I am feeling significantly better than I did in my previous post.

Something else I am noticing is a real increase in weakness in my legs. I am not sure if it’s just because of the CFS or if it is genuine muscle weakness because I am spending so much time laying down that my muscles are wasting. I am tempted to try doing some kind of minor leg exercise to strengthen the muscles but I am really scared of causing another crash.
What does everyone else think about this??

In the same vein as the leg situation I think my brain and general zest for life seem to be diminishing. Again I wonder if it is because of lack of stimulation or if it is directly due to the illness? I do feel like I need to find a way to get out of my 4 walls more often. It’s difficult because many days I am just to ill and on the days when I think I might be able to manage it I am either just to scared in case the POTS stuff happens and I get dizzy or it just seems to difficult. To get out I need help from someone else and that means asking someone to be my babysitter. Mmmmmm ….. what to do, what to do??

I am also feeling very frustrated at the moment. I have a huge list of projects that I want to work on but I can’t seem to gather myself to start anything. By the time I have a shower and get breakfast I am pretty much done until lunchtime and then standing to make lunch exhausts me and so the day goes on ….. AAAAAHHHHHH ……. Frustrating, hahahahah!

Wednesday, July 28, 2010

Beta Blocker crash and BURN!!!


Ouch!!
Well after my last post over viewing my symptoms at this stage I have entered a new zone!! NOT a good one. I decided to give beta blockers a go for my orthostaic intolerance problem. Great idea, helps some people, nearly killed me hahaha.
I took a tiny tiny dose 4 nights in a row and by the fifth day I thought I was going to die. I had a severe reaction and they worked in reverse. My blood pressure got much lower and heart rate much higher, terrible headache, nausea, stomach cramps. It also made my body crash in a general sense, all my other CFS symptoms ramped it up.
Obviously I did not take the little pill on the fifth night and I saw my Dr on the 6the 6th day. My Dad had to virtually carry my into the clinic. It was awful.
My Dr (who I think is fantastic) said it was a reaction blah blah blah and I needed to stay horizontal for a few days and start the lots of water and salt thing. This was now officially a full on POTS episode. He also suggested we keep clear of any medications that my body wasn't already familiar with (sounds like a good idea to me). My friend Michael came and spent the next few days with me, feeding me although I felt so rotten I could barely eat. My Dr also suggested I come back in a few days and we try a Saline drip. He said the problem is low blood volume. If you don't have enough blood your blood pressure will be low and your heart beats twice as fast to try and pump it round sufficiently. Made sense to me. So in theory, putting Saline into me would increase the volume of blood and should alleviate the symptoms temporarily. I went and did this a 2 days ago and it was like magic! I instantly felt better and it lasted for almost a full day and although the symptoms came back they are not so severe. I am going today to have another go. Apparently if you do this say twice a week your body starts to recognise that new volume as being normal and will correct the problem itself over time. I think it's worth a go.
Also my Dr has set me up with a POTS specialist to go see in a few days time which is fantastic. It usually take months to get appointments with these people. The POTS guy may or may not have anything to add but it's better I go see him. If he wants to experiment on me them I am going to insist he admit me to hospital to do it. I don't want to be home alone ever again and have a crash like I did last week. It was totally terrifying and has left me with all my symptoms worse than they were previously. I just hope that after a few weeks I come back to baseline and that I get the POTS under control. It's crap not being able to sit up to eat and worse to fall off the toilet because your dizzy!!!!

Oh, and again, thanks everyone who commented on my previous post, it's very much appreciated and fab to know that others have experienced the same issues etc.
Mark, I'd be really keen to talk to you about Stem Cell stuff. Please drop me an email so I can get in touch - longlee@gmx.com Cheers!

Monday, July 12, 2010

This is better, but that is worse ....


It’s kind of the middle of the year so I thought I would just review how I am going in a general way. Firstly I can say that in the last 6 months my symptoms have been constantly changing. The thing that was initially my biggest problem was malaise, I’d wake up with it and go to bed with it. Every muscle in my body was just sore and icky. Now the malaise is really only present the day after I have done something. It doesn’t take much to trigger it off, if I do some laundry, wash up dishes and walk to the mail box all on the same day then I will usually have malaise the next day. I have seen a gradual but steady decrease in brain fog. I used to seem to just have it at a moderate level all day whereas now I only get it when my senses are assaulted, such as if I have a visitor who bombards me with questions etc. My level of muscle weakness I don’t think has really altered, I am pretty weak most of the time. Dizzyness/Orthostatic Intolerance has become my biggest issue. Initially I had random dizziness but I didn’t think it was major but now every time I stand up I feel very dizzy until I sit back down. I also get dizzy if I sit upright for more than 10-15 minutes, so I need to lounge with my feet up as much as possible. This issue makes it really hard to leave the house because being in a car means I can’t really get my feet up and being in a wheel chair is the same. Flu like symptoms were also something major for me 6 months ago but I only seem to have this on occasional days now. My sleep has generally improved but I do still get the odd night of scary night terrors, night sweats etc. My sensitivity to noise, light and movement is much much worse now. I am even finding that watching TV can be a problem. Sometime if the image on the TV moves suddenly I get instant motion sickness, it’s really bizarre! My body temperature seems to be regulating itself a little better now. It is still low but it’s consistent, previously it went from being very low to very high each day … it was just all over the place. My mood is still generally good, I have down days just like everyone else but it doesn’t happen all that often.

The things that have become worse I am assuming are just following the path of the disease and the things that are better I believe are mostly due to the medications I am using. I saw my Dr today and he has given me a prescription to get some Atenolol which is a beta blocker and when used in low dose it is supposed to help with the Orthostatic Intolerance. So fingers crossed. If I can get that under control I will be much more functional I think.

So I guess all in all I am doing OK. The big picture says I have not become worse over the last 6 months, but not significantly better either, just different. Different is OK! I think I am happy to just see changes occurring.

I’d be interested to know if other peoples symptoms wax and wane like mine have??

Saturday, July 3, 2010

Progress?

I know I only posted yesterday but I just came accross this documentary from the 90's and I thought some of you may be interested. It's an hour long but worth watching. It's a real reminder of how little has changed over the years ...

DVD Video Recording from Barborka on Vimeo.

Friday, July 2, 2010

Cars, medications and XMRV


I have made a small decision this week, but it’s one that feels like a huge deal. I have taken steps to de-register my car and cancel the insurance on it. I haven’t been able to drive in 6 months and clearly I wont be able to do so anytime in the foreseeable future. It’s just common sense really. Why pay for car registration and insurance on a car that will never leave my garage, in fact why not sell the car?? The thing is, even though I have come to a place of acceptance with this illness I guess there are still little bits of me lurking in the shadows that are saying ‘you’re not really ill, you’ll be up and about again in no time’. I know rationally this is not true but I guess it’s tied into that emotion of hope. De-registering and un-insuring my car is going to save me $1200 a year but it’s also snatches away another symbol that represents my old life and the hope attached to that. I have to do it because the money thing is a BIG thing ….My bank balance is currently going backwards at a rate of about $200 a week, so I need to find ways to trim that down! I’m not ready to sell the car, but maybe that will happen in due course.

On a brighter note (big happy smile goes here). I have settled on some medications/supplements that I believe are helping with many of the day to day symptoms. I am taking Endep at night to help with sleep (I know this is working because I forgot to take it the other night I had a terrible night of cold sweats, nightmares and endless tossing and turning). I am taking Vitamin D capsules which help with muscle dysfunction and pain, PreDop which helps with heart dysfunction (POTS etc), I am also wearing compression stockings to help with this (and they look very fetching). I am taking L-Carnitine which help with brain fog and nerve function and Creon which is a digestive enzyme because my pancreas is in a state of constant inflammation and isn’t working properly. Oh, and I am still getting a Vitamin B injection every 2 weeks which helps with fatigue and malaise (this definatly helps me). As I said, this combination does seem to be helping with each of the day to day symptoms. I’m miles away from being symptom free and I still cannot stand or sit upright for more than 20 minutes without the POTS getting me but it’s real progress and I am happy with that!!!

OK, next on the list ….. XMVR. I don’t know why I allowed myself to get sucked in by all of this. This kind of thing never goes smoothly, obviously there will be no resolution anytime soon …. I’m sure this will eventually be proven to have some significance but until then I reckon we should just go about our business as usual …. and when something is proven and is legitimately published then we can evaluate it.

Lastly, if you haven’t already signed the Justice for CFS/ME sufferers
Petition then please have a look - http://www.gopetition.co.uk/petitions/justice-for-cfs-me-sufferers.html even if you are not in the UK it is still worth signing!!!

Friday, June 25, 2010

What about ME?

I'm sure most, if not all of you have already seen this .... but we should keep spreading this around. The film by Susan Douglas:

By Double D Productions: "We would like you to know about our up coming film about ME/CFS titled, WHAT ABOUT ME?

For full info of the film please visit our official website http://www.whataboutme.biz


What About Me? Trailer - UK from Double D Productions on Vimeo.



What About Me? Trailer - USA from Double D Productions on Vimeo.

Friday, June 18, 2010

the Miracle Cure


I recently asked my friend David what he knew about Ampligen. David is someone I have known on and off for 20 years and he has been living with CFS/ME for most of that time. We live in the same city but because he and now me are both to sick we haven’t actually seen each other in about 6 or 7 years. We do email each other daily though and he has been my sounding board and my mentor. I wish he hadn’t ever become ill and I wish he wasn’t still living with this but I suspect that I would be in a total state of madness if it weren’t for his wisdom, experience and guidance ….. anyway …. He and I had a brief email conversation about Ampligen and I hadn’t realized when I had asked about it just what a loaded subject it was. David pointed me in the right direction and left me to do some reading and I finally understood some of what he had expressed to me over the past 6 months about the negative roll of politics, big business and arseholes who just want to make money off of sick people. Things like Ampligen and more recently XMRV come to light and there is a big buzz about them and so we get our hopes up …. But then either no one is interested in funding the appropriate studies, or the facts get mixed with crap and lies and we are deceived or else ‘the latest miracle cure’ turns out to be false ….

I am starting to see the ramifications of so many broken promises and hidden agendas by governments and big industry including medical related ones. It really does suck. I find that as a newby to all of this I am still hunting around for something that will possibly help me get well even though I am beginning to really understand that maybe it’s just best to live each day best I can and if something genuinely helpful becomes available then I will hear about it. I think I haven’t yet let go of all the things I planned on doing over the next decade of my life. I had plans and I keep thinking that if I just manage to get a little better then some of those things are still in reach ….. I’m not sure if it’s better to hang onto that hope or if it’s better to let it go and just be more accepting of reality???

I asked David what he thought about hope verses reality and this was his response:
It’s not a bad thing to hold onto that hope probably. And to continue the search for as long as you can and/or need to.

Even just for some things to help with symptoms. Because heaps of people have had heaps of help with symptoms. Though still mostly it's a matter of finding the best lifestyle to optimise your own life. There's a good chance you'll be in for the long haul and IMHO we've got to get on with the day by day as comfortably as possible... or we just won't make it -- because, let's face it, it IS a killer illness for too too many. Because this is so fucking soul-destroying.

I've got to remember to get a chair for my soapbox... so it doesn't wear me out so much when I climb up on it.


I’d be really interested in hearing other peoples thoughts on all of this??

Friday, June 11, 2010

HELP !!! haha, did that get your attention?


The first part of my post is a call for help on behalf of Dawn who writes a blog called Daily Life with "Hidden" Chronic Illnesses, please visit her blog here -
http://dawncfsandic.blogspot.com

Dawn needs some advice from readers in USA. Here is an excerpt from her recent post:
For anyone reading in the US, do you have any experience or advice for proving a claim for CFS under private disability coverage for short term disability coverage (at least for the moment)? Specifically, unfortunately we are covered under the famous company u*n*u*m.

My doctor is very willing to assist with all paperwork and forms, I do have swollen lymph nodes (especially right now), but don't really have any other "markers" - at least that I'm aware of (which granted is limited knowledge).


If anyone has any helpful info then please either visit her blog or post a comment here. Thanks!

Now … what’s up with ME (haha, no pun intended)
My feelings are all over the place this week. One minute I feel hopeful and the next totally hopeless. My sleep has also been total crap this week and that doesn’t help. I find that mornings are generally ok but by evening the nasties that live in my body start to show themselves! By bedtime I am usually really tired but I just don’t want to go to bed because I know it’s going to be hours of not sleeping and I seem to get lots of other yucky things during the night. I can’t really even explain what I mean, I feel freezing but at the same time think I may be too hot and my vision goes all weird and distorted and it’s SCARY!!! Nothing like a bit of FEAR to keep you awake!! Hahaha I’d probably get less spooked if I weren’t here alone, but I am, so bad bloody luck really!

On the upside I have started taking PreDop which seems to be making a difference with brain function and also my general stuff, POTS like symptoms especially. So that is all good news!! I have been this week for more tests to check on HerpesVirus6. I had somehow failed to tell my Dr that I have had Shingles 3 times in the last 18 months, so if my blood shows high levels I may be a candidate for anti virals?? We shall see….

Well that’s about it at the moment I think. Thanks everyone who has been leaving comments … I read them all with joy even if I don’t always get back to you (sorry ) LOL.

Wednesday, June 2, 2010

Ron Mueck on wheels


Well, I did it!
Yesterday my friend Keiryn came and got me and my new wheelchair and took me to the art gallery. It was my first real outing in the wheelchair and in fact my first real outing since getting sick last November. I have to say that I was dead scared! The art gallery is a 10 minute drive which on a bad day is enough to knock me down, and then we'd have to park somewhere and get from there to the art gallery and find the entrance and pay for tickets .... all simple stuff but all tasks that require thought and energy. I was so worried that I'd be wiped out by the time we actually got inside. It was all fine though, for at least 20 minutes. Keiryn pushed me round the exhibits and it was nice. Unfortunately there were lots of people and I found that the combination of lighting and all the movement made me feel really dizzy. I was also having some weird kind of trouble with my vision. I can't really explain it, but it was weird.

Aside from the scary stuff and feeling dizzy and odd, it was totally fab to be out somewhere nice and the exhibition was FANTASTIC. The photo is one that I took (the artist - Ron Mueck encourages people to take photos). Ron Mueck does these unbelievably lifelike sculptures of people but they are either huge or tiny. Very talented man. Oh, the other thing that happened which I hadn't been prepared for was bumping into someone that I used to know before I got sick. He came up and gave me this look of disbelief and said 'so what's with this', meaning the wheelchair. I didn't know what to say .... I just kind of said 'um, nothing really' ... It was a strange encounter and reminded me very much of what it had been like bumping in to people after my partner died. Neither of you know what to say and it's just awkward.

Anyway, I was expecting to have huge payback with flare up today, but so far nothing major .... so fingers crossed that it doesn't arrive tomorrow instead hahaha.

Thursday, May 27, 2010

Riding the Roller Coaster


Up down up down round and round … I can’t seem to keep up with how I feel, one day it’s pretty good, the next is total crap. The unpredictability is starting to really annoy me!
I do have a few new things to report and I am not even sure which are the good bits and which the bad?? Hahaha

Firstly, I did go for a quick spin in my wheelchair. My friend Michael took me out for a ‘test run’. I didn’t want to do anything major until I was sure I wasn’t going to get massive payback! We went to ‘the Green Bridge’, which is a new pedestrian bridge that goes across the Brisbane river. It’s about a 10 minute drive from home and Michael simply wheeled me across a back again, which was about a ½ hour ride in the chair. I felt ok afterwards and was really pleased so I suggested we do a detour on the way home and stop at the RSPCA (animal refuge). Michael is after a new budgie and I thought we could stop and have a look. Bit of a mistake I think! There was a big line up and lots of kids running around and screaming and it was just way to much for my poor little head.
I think it made me crash over the following few days.

Secondly, I have started taking D-Ribose which is a kind of sugar that your body needs to generate energy. I wont go into the technical blurb but do google it if you are interested. I am hoping it will give me a boost but in a way I am also hoping it doesn’t, because, it is unbelievable expensive. 200grams for $85 …. OUCH!! I worked out 200grams is about a 10 day supply. So I don’t know how long I could afford to be taking it. Anyway, I will give it a go and see what happens!

Thirdly, I have been having real trouble with my body temperature. I check it all the time and it mostly sits between 35.5 (96) and 36 (96.8), it is supposed to be 37 (98.6°F). Last night I woke up feeling HOT, my temperature was 39 (102.2). I just can’t seem to be able to regulate body temperature. Today I feel like I have been repeatedly run over by a bus.

But …. The good news ….. um …… thinking, thinking …… nope, can’t think of anything just yet! Hahahaha.
My mood is still fine and dandy which is the greatest news!!!

Monday, May 17, 2010

Doing Wheelies!


I am sooooo excited!I just bought myself a wheelchair online! Whoo hoo, I will be out and about doing wheelies in no time LOL. I have been thinking about it for a while and as I said in my previous post, I have been having some pretty good days (by my standards). I really feel like I'd like to try and go out to the art gallery or something. I can still only walk a very short distance without crashing so a wheelchair might just be the way to do it. Of course I'd need someone to push me and drive me to the gallery etc. The only thing I am unsure about is all the other sensory stimulation, lights, sound, people, movement and the likes. It may still be enough to make me crash but I wont know unless I give it a go .... so I am going to do just that!!! and .... I am soooo excited hahahaha!!!

It will be a few days till I get the chair but I will certainly write a post as soon as I have given it a spin.

Saturday, May 15, 2010

Electromagnetic what?


has anyone given a second thought to the possibility of electromagnetic fields making us sick? It's not the sort of thing I'd usually pay any attention to ..... seems like one of those 'grasping at straws' theories, but ....
While I have been without Internet at home my computer has been off most of the day and coincidentally I have felt much better. It came to mind because after 2 weeks with no Internet I got BORED and as a way of passing the time I had started to scan old photos and i was noticing that after 20 minutes at the computer I felt dreadful and has to retreat to the couch again. This in itself is nothing new, 20 minutes is about my limit in general but because I had had the 2 weeks sans computer it seemed more obvious that something was going on. I thought initially that it was just the fact that sitting in an upright chair for that long was the problem, but I have tested that out now. I can sit in the same chair at a desk with no computer to read my book for MUCH longer without crashing. It really seems like being near a computer that is turned on is doing something to me.

has anyone else had any experience with this sort of thing??

Monday, May 10, 2010

Alone (aaawww, so sad)


I'm back online (thank God). I have been offline for a over week because I was changing ISP's. I still only have a temporary connection with minimal downloads but all should be back to normal in another week. I really do feel like I am back from the dead hahaha!

It's been a really odd week for me. I have felt extremely isolated. Aside from no internet my friend Michael who along with Mum and Dad is my major support was away on holiday. I went most of the week without seeing, talking to or even texting another human being, and it wasn't nice. I realized just how dependant I now am on others. If I run out of bread or milk I can't even get some without phoning for help. I also realized that I have been getting through this just be keeping my mind to busy to notice how shitty it really is. Without internet and people to communicate with I struggled to keep busy. Some days I am just too sick to read for hours or even watch TV. I spent a lot of time just sitting or laying around thinkng ... really BAD idea!! All I could think about was what will become of me. Like I said my main support is really Michael and Mum and Dad, and all 3 have health issue etc of their own. All my other friends except one haven't made any attempt since Xmas to see me. I feel disappointed and let down but sadly not surprised. I do understand how busy life is for people but I also know that in the past when someone has really needed a hand I have made time to be a friend.

So .... what will become of me? I do feel envious of those of you who have partners and families, it must be nice to feel safe. I even thing about how nice it would be to just have a little cuddle once in a while.

OMG .... what a sad and pathetic post this is hahaha. I should say that now that my internet is back on I CAN distract myself and I do feel less alone!!! YIPPEEE!! hahaha

Oh on a serious note, what are everyones views on things like stem cell treatment??

Sunday, April 25, 2010

Off the air

Just a quick note to anyone who is interested .... I may be offline for a few weeks. I am changing ISP's and the new company I have signed up with said it may take up to 20 days to get back online ... why so long I have no idea. Anyway if you are thinking maybe I am dead because I have not been posting, you are hopefully wrong LOL.

Oh, and one quick bit of excitement to share .... I got a new TV! Yippee!!

My old one blew up and my Dad was kind enough to buy me a new one! How lucky am I :-)

See you all soon .....

Tuesday, April 20, 2010

Going for a ride in an ambulance.


Oh boy it’s been a yucky few days. The other night I went to bed feeling just as I usually do but during the middle of the night I was awoken suddenly because my body was crashing big time! I came too gasping for air and jumped up realizing that I was extremely dizzy and clammy and my heart was pounding. I felt like I was seconds away from passing out. My first thought was I had to open my front door so that if I died someone would find me. I staggered in a terrible panic to the door and opened it, then lost my balance and ended up on the floor. I crawled across to the phone and called for an ambulance. If you have ever called an ambulance you’d know that they ask you a heap of questions that at that moment seem stupid and irrelevant, I just wanted help!!

When the ambo’s arrived I was still on the floor and they proceeded to ask more dumb questions like ‘what kind of work do you do’ … HELLO I CANNOT BREATHE!!!!!

After getting the niceties out of the way they final did their job and realized that I needed to get to hospital straight away. I was tachycardia and drifting in and out of consciousness. SCARY!

By the time I got to hospital I was shivering uncontrollably, I felt truly awful and really thought I was going to die. After what I thought was about an hour (was actually 4 hours) I was feeling more normal. They did a bunch of tests and concluded that I had a pancreatitis attack. I have had an ongoing pancreas issue. My lipase levels are always elevated. I didn’t have any pain this time but the Dr’s reckon that because of the CFS my body just went into shock and my systems all freaked out. My blood pressure when sky high, my oxygen levels dipped … etc etc …

Today I am at home an feeling exhausted, sorry for myself and my sinuses are screaming!! Which may or may not be a coincidence?? Sometime I think that it’s good I live alone because having people around zaps what little energy I have but when stuff like that happens I realize that living alone could well and truly be the reason people like us sometime die or suffer unnecessarily. It’s a real catch 22.

Oh and to top it all off …. My TV blew up the other day!!! Hahaha.

Saturday, April 17, 2010

XMRV

I know I only just posted something but I just stumbled upon an article that I thought was fascinating and I wanted to share it. Click HERE.

I also found this video which is somewhat good but also somewhat annoying, typical media hype stuff ... what do you think??

Friday, April 16, 2010

Night terrors, dreams and things


Since I first got really sick last year I have been having odd dreams and nightmares pretty much every night. I have spoken to a few other people who have had the same experience. Perhaps there is a link for us?? Mostly the dreams are just unsettling situations that I am unable to resolve so I often wake feeling on edge or upset etc.

Last night I had a dream that I think was of real significance which is why I am bothering to mention it. In my dream I had CFS and that was the first time I have dreamt of myself that way. Up till now when I appear in my dreams I am still well and able to do everything that I used to. This morning I feel like it must signify a true acceptance of ‘the new me’. I had been thinking about my life the other day and I came to the conclusion that I was still in denial to some extent …. Well maybe now I am not!! I think it’s a good sign. I really believe that in order to be happy you have to accept yourself as you are, whatever that may be. So, yep, it’s a good thing!!

The other thing I will mention but I don’t want to dwell on is that I think I am have a relapse. I had started feeling somewhat better with doing the graded exercise and my little art projects but in the last week I have really gone down hill again and I can’t see any obvious reason for it. Each day I have just felt worse than the day before. So I will sit back and rest and see where it goes…..

Friday, April 9, 2010

Comparing XMRV to HIV is a mistake




This kind of media attention is going to cause hysteria. I have already had one friend say that she cannot visit me because 'it' is apparently like HIV and she doesn't want to risk catching 'it' ..... fanbloodytastic! This media stuff is just gonna cause more isolation and condemnation for those of us who are unfortunately ill ....

I am just old enough to remember the hysteria that occurred in the very early days of HIV. This was largely due to the fact that no one initially knew how it was transmitted. All the media could say at that time was that it was a 'gay' disease, which we now know was totally wrong. The media labeling HIV a gay disease condemned all gay people and it was just awful. I remember walking to work past a factory and having 40 or so workers scream 'AIDS victim' at me, and this happened everyday. I was also spat on, had things thrown out of vehicles at me and beaten up twice and all because the media had hyped the situation up so much that everyone was terrified of gay people in general. For the record I do not have HIV.

We who have CFS DO NOT want to suffer that kind of trauma! I wish the media could be a little more responsible. Yes, there are similarities between XMRV and HIV but not in the way the general public might assume. After all these years if you say HIV some people still automatically think 'filthy dirty unnatural sex acts'. If it turns out that many of us do have XMRV we don't want to be tarred with that misinformed brush. The media need to mention exactly what the common factors between HIV and XMRV are and also talk about how one contracts the virus. As I said, I have already had one friend voice to me that she is scared to visit me in case she catches it .... This is no way to live and I do not want to feel more isolated than I already do!

I do agree that banning blood donation until ore is known is a smart thing to do, my issue is with media coverage that’s all.

What does everyone else think??

Sunday, April 4, 2010

Feeling GREAT (for an hour or two)


Hmmm … something seems to be changing. Over the last two weeks I have noticed that I have felt somewhat ‘better’. Actually I’m not even sure it’s better, just different. I seem to have a period every afternoon when I feel really rotten but mid morning to mid afternoon is pretty damn good. Early morning and night time are just average crappiness. But there does seem to be this pattern now, which wasn’t there before. The only thing that I am doing differently is that I started my graded exercise program. It’s very minimal, basically I walk for 3 minutes a day blah blah blah, so I doubt that it’s what has caused the change. Other than that it could be that I am mostly sleeping better. I am taking a small dose of Endep each night and it has started working for me, I am now sleeping much much better most nights. Oh the other thing I have noticed is I now get a headache everyday, which is also new (but not exciting hahaha). The other thing I am wondering about it the influence my mood may be having on my physical symptoms. I find that because I get bored easily and because I have a creative mind, I am starting to make myself work on some new projects. Writing and recording new music, experimenting with some photowork inside my flat and also working on a small video project. Anyway, these things have me excited and I wonder if those happy hormones are making a difference to the physical nasties?? Hmmmm, maybe the excitement is what makes the morning/early afternoon so good, but then I crash in the later afternoon, which sucks because there is nothing worse than not feeling well enough to watch The Bold and the Beautiful (on at 4.30pm daily). Say what you will about trashy daytime TV but tuning in to see if Donna gets locked in the steamroom by Pam and is left to die is what keeps me going!! I don’t think there is much more I can say after that ... LOL

Oh, P.S. yes that is a VERY scary pic of me .... but don't my new teeth look FAAABULOUS!

Tuesday, March 30, 2010

Easter excitement


Firstly, happy Easter everyone! I hope that you all get to spend time with your families or get to do something FUN for a day or two. I don’t plan on doing anything special, but I don’t really celebrate Easter or Christmas. I might just go through old photos or something, that’s always a nice thing for me to do :)

Secondly, Yah!!!!! My application for disability support from the government was approved today!!! They have agreed to pay me $255 per week which I certainly wont be grumbling about. I think the maximum they will pay is about $320 per week but it depends on your assets and cash on hand etc. It really is GREAT news for me and a real victory for anyone who has one of these illusive illnesses. In recent weeks I had felt the worry and stress starting to rise over my financial downfall so I can now ‘relax’ for a while. Aaaaahhhhh :) hehehe

Regarding my previous post, thanks to everyone who commented, it’s great to hear stories of people who have recovered. Some people were asking why and how these people had recovered. If anyone knows what treatments worked then PLEASE leave a comment with any info you have … any positive info is always welcome.

I can’t wait to tell my friends and family that I am officially disabled haha (they have been calling me a retard for years LOL).

Saturday, March 27, 2010

Feel like Sisyphus? Well guess what, some people do recover!


I had my first meeting with a psychologist the other day. She has been appointed as part of my ‘care team’. I didn’t really get all that much out of it and I’m not sure that I will given the fact that psychologically I am doing pretty good. The interesting thing though was that she herself had suffered from CFS for 6 years and had recovered. I am mentioning this because it struck me that I had never spoken to anyone who had ever recovered. There is all this talk that some people do get better, but where are they??

All the people who blog etc are still unwell and some have been unwell for many many years. Being in touch with the chronically unwell made me forget that people do in fact get better. I guess the thing is that people who do recover no longer have a reason to blog and so they disappear from our view. The concept of recovery almost seemed like a myth to me but my new psychologist was living proof. Oddly enough, I instantly had my guard up and assumed either she had never had CFS severely or else she had been misdiagnosed. I quizzed her and it seems she was very ill, bed ridden for years, unable to even read. So there you go, we shouldn’t lose sight of the fact that we can recover … it really does happen for some people!!!!

Does anyone else know of people who have recovered? It would be cool to share some of that hope :)

P.S. Thats was Sisyphus, not Syphilis .... hahahaha

Monday, March 22, 2010

Happiness


Thank you, Shelli at living-the-cfs-life, for nominating me for this prestigious and mood lifting award!

The rules:
1.)When you have received this award you must thank the person that awarded you this in the new post.
2.) Name 10 things that make you happy
3.) Pass this award onto other bloggers and inform the winners

So, without further ado, here are ten things, in no particular order, that make me happy.


1. Sitting down and just having a normal chat with my Mum or Dad about nothing important.
I seem to spend so much time with Mum and Dad that is about damage control for me or someone else, so to just be with them for pleasure rather than pain is awesome. I look forward to more times like these.

2. Getting a good nights sleep.
If I wake up in the morning and real refreshed and like I have slept well then I know it’s going to be a better day

3. Having a plan.
Being directionless stresses me out, so knowing that I have a plan makes me feel in control and the stress melts away.

4. Talking to old friends about old times.
I’m not into living in the past however many years ago my life was far closer to perfect than it is now and it’s nice to remember how that used to feel.

5. Feeling the sun on my skin.
I love that feeling of early morning sun warming your skin.

6. A good laugh by yourself.
I love it when something totally unexpected happens and you have a genuine laugh to yourself about it. It pulls you up and reminds you that you only ever really live in THIS moment and you can forget what happened yesterday and the worry of tomorrow.

7. A naughty treat.
Fries from McDonalds or chocolate!!!! Mmmmmmmmm, enough said, right?!

8. Completing a task.
Regardless of what the task is, the satisfaction you get when you successfully complete it always motivates you to set a new task!

9. Recognizing that I’m not alone.
CFS has been really isolating so far for me and having people around both in the real world and the internet world is a huge comfort. When Doctors and some friends etc really don’t understand it’s totally fab when you get real validation from people that do ‘get it’

10. Creativity.
Setting myself little or sometimes big arts projects has always been the way I externalize my personality. I am now learning that creativity is so much more important than that. Each day I find creative ways to live within my current confines. I think it’s a gift to be a lateral thinker!

I'd like to nominate Terri at cfswarrior for being an inspiration!

Thursday, March 18, 2010

Frustration, listen to me or PISS OFF!!


I’m trying really hard to stay positive and be realistic. I have made an effort to educate myself best I can and be proactive in daily living and also for a longer term plan. I know that this is not just going to go away and it is more than likely that it will remain in varying degrees for a looooong time!!! I can feel my frustration now rising with people around me. Everyone means well but it feels like they either are not listening or aren’t taking this seriously, or they are just plain not interested. People that should know better by now will drop in unannounced and talk and talk and talk …. Do I really have to remind people constantly that just because I look ok please don’t assume I am. The other thing that pisses me off is remarks like ‘in a few months when you are well again’ or ‘you’ll be fine before you know it’. I know that those comments come from a good place but THEY ARE NOT HELPFUL, it makes me feel like YOU ARE NOT LISTENING …aaaaahhhhhhhh!!!!!! Either listen to me or mind your own business please!

When will they ‘get it’???

To me it seems like the sensible thing to do is to start making plans and finding ways to live successfully with this rather than trying to deny its existence or to just sit and wait for a few months and see what happens. I know from past shitty experiences that I am an adaptable person and I can always find ways to feel productive. I have endured many challenges and I have always made the most of things rather than just giving in to them and allowing them to take life away from me. I have tried to express this to people around me and they all seem to think that I am being negative, I shouldn’t assume that it’s not going to get better soon and it’s to early to be changing things to accommodate this. I totally disagree, I see my willingness to embrace it as a positive move rather than a negative one ….

What do you think???

Monday, March 15, 2010

Decisions decisions


Hmmm … How do you decide what treatment path to go down?? By all accounts there is a better recovery rate if you start treatment early, but what treatment. I’d like to be one of those people who is really content to just go along with whatever their Dr suggested. I am convinced that My Dr knows his stuff and that he is an expert in CFS in my area but …. I’m more inquisitive than to just go with the flow.

I have spoken to quite a few other CFS’s now and they have all had varying degrees of success with different things. Florine F, Valtrex – Valacyclovir, D-Robose, LDN, Amino acids, Vitamin B, Vitamin C, Adderall, Ritalin, NLP CBT Gupta, eating no red meat or sugar etc, graded exercise, OMG!!!!!! How do you know???

People have had success with all of these things but some people do nothing and still have recovery. All I know for sure is that I want some kind of functionality to return.

After having a really low few days I was lucky enough to have been re-motivated by people around me including some of the visitors to this blog (thanks for the artist links Cusp) ….. I am going to spend a few days thinking and I am going to plan a project that I can work on in little bits (as suggested by Jo) and I am going to pick my sorry arse up!!! And DO SOMETHING!!! Hahaha

If anyone has anything to say about treatments I’d love to hear it …..

Friday, March 12, 2010

Such a bore ....


I’m bored with being bored. There are only so many different ways you can look at the same 4 walls and I have already found all of them! I’m not a huge TV fan and it’s the weekend which means TV is even worse than usual, so that’s not an option. I’d really like to be outside. It’s windy but it looks beautifully sunny. I have two balconies which is a blessing however, same story … there are only so many things you can see from that single viewpoint. My apartment is up 3 flights of stairs, and while I have managed to work out a way I can manage to get down them getting back up is not always so easy, so it’s really safer to just stay inside 

Before I got sick I used to amuse myself with work. My day job was doing graphic design but apart from that I also worked on photographic projects and also music projects. I still have the passion for these but logistically it’s difficult now. The photographic work requires physical movement which is just not gonna happen and the music stuff I can manage in small increments. Working in small increments is really frustration and requires more patience.

If you are interested in hearing some of the music that I have been working on while being housebound you can go here http://www.reverbnation.com/leeleetheprettytanicos Oh and I should ad that this is stuff that I am working on with producer Peter Tanico who is in NYC.

I think a big issue with boredom is that even if you have stuff to do you really want to be doing something else. There are things I could be doing like sorting out paperwork and looking at my finances, I do need to find ways to minimize spending, but that is really an unappealing task so it’s not gonna help with boredom. I could start working on cooking some meals for the week. I try to cook in batches so I don’t have to waste energy everyday dealing with that. Cooking is boring too though when it is out of necessity rather than for pleasure. Aaaaahhh yes, that is the key ‘pleasure’. Gotta find something new to do that is fun 

Any suggestions? I’d love to hear what everyone else does to amuse themselves???
My only restrictions are that I live alone, I live up 3 flights of stairs, I cannot walk more than say 20 meters without it causing problems later, I can’t focus on anything mentally for more than about 20 minutes before the brain fog sets in …. Hahahaha … so … any suggestions????

Thursday, March 11, 2010

ANGRY!!!!!! aaaaaaaaaahhhhhhhhhhhhhhhh


I’m really really really ANGRY!!!!!!!!!!!!

No matter how shitty life has been or how bad I feel I always remind myself that at least I am able to care for the people that matter to me. Well even that has just slipped away. Someone really important to me had something dreadful happen today and there was nothing I could do. In the past I would have hopped in my car and driven over to ‘be there’ but all I could do was sit on the end of the phone and say how sorry I was …. which was totally useless. I’m so angy, this stupid fucking illness has not only ruined my life but it’s now ruining my ability to be of use to others. I’m so worried about my friend and I don’t even have the strength to pace up and down. How do you convince yourself that there is any hope when you are forced to miss THE most important moments in life.

Another friend of mine has CFS and he missed my partners funeral and his daughters wedding because if it. I now know how he must have felt …. How can you expect someone to forgive you for being absent when it really counts when your excuse is an invisible illness ….. IT”S ALL JUST SHIT ……..

Tuesday, March 9, 2010

Money money money


January 27th I initiated the process of applying for disability support pension with Centrelink (social services). They sent me out a huge pile of forms including one for my Dr to fill out. I went through the process of gathering all the info and documents required and filled in the forms and returned them. I noticed at the time that they did not ask for a separation certificate from my ex employer and they did not ask for a copy of the loan agreement for my mortgage. I did supply a mortgage statement which indicated how much I owe on the loan and what the interest rate is and fortnightly payments etc.

A few days later Centrelink called and ask me to come in for an interview and also to be assessed by their Dr to make sure I wasn’t faking etc. I went in and met with the Dr, he just basically asked the same question over and over – ‘when will you be able to go back to work’. My answer was, I have no idea, but it wont be anytime soon. The interview was just to go over the forms I had submitted to make sure nothing had been left out. Everything seemed to be in order and I was told that I’d be notified sometime in the next 6 weeks as to if my application had been successful.

Yesterday I received a letter from them and I thought ‘oh goody, lets see if I was successful’. Unfortunately the letter was just to notify me that I had failed to supply a separation certificate and mortgage loan agreement. The letter also stated that I had 14 days from the date stamped on the top of the letter to return the required paperwork or else my application would be cancelled. The date stamped on the top of the letter was the 4th of March and I received the letter on the 8th of March, so I was already down to 10 days. I called my ex boss and asked for the separation certificate, no problem there, which was great. I then called my mortgage lender to get a copy of the loan agreement and they told me it’s a charge of $50 and will take 4 weeks!!!! Aaaaaaaaaaaahhhhhhhhh!!!! I explained to them that I need it in 10 days and they said blah blah blah blah, we will try but it might take 4 weeks!

So now I am a little more stressed than I was a few days ago …… but I will just have to sit and wait and see what happens.

I haven’t worked since November 2009. It’s not until you have no income that you realize just how much it costs to live and having to buy gluten free groceries increases the shopping bill substantially. With recent medical expenses and time in hospital etc I have gone through a shit load of $$$ since last November. I really do hope that I manage to get some positive results with Centrelink, otherwise I am going to be totally fucked!!

Sunday, March 7, 2010

Would you like fries with that?


Yesterday something truly fantastic happened!!! I went out !!! I wasn’t going to hospital or to see a Dr, but I WENT OUT !!!

The night before I started taking Endep which is an old school type of anti depressant. I am not suffering from depression but my Dr reckons that taken in very low dosage it helps us CFS people with sleep. So I gave it a go and WOW, I slept deeply all night. It was heaven  So yesterday when I got out of bed I felt better than I had in months. I phoned my good friend Michael and he came and got me and took me to the park. OK, so it wasn’t out to the movies or for dinner or a night club or theme park ….. but I was out of my house doing something nice for the first time since November 2009. I even had a short walk, maybe 100 meters. I sat on a bench and lapped up the fresh air and watch people … mmmmm it was really nice.

On the way home we did the drive through at McDonalds and I GOT FRIES …. Yippeeee. Hahaha. Sounds like small stuff to be exited about but honestly I have been craving fries for ages and it’s not something I can organize easily.

So a walk in the park and fries. Yesterday was a fab day 

I have to say that I was expecting some payback today though. You always expect to have that icky malaise the day after to ‘do something’. But so far so good …. I don’t feel as god as yesterday but I’m doing ok.

I think I had a little glimpse of what it’s like to feel normal again and it’s given me new hope ……

Thursday, March 4, 2010

Treatment


I went back to see my Dr yesterday and I am pleased to say we are starting to make progress in terms of a plan. We haven’t been able to do much up until this point because during all the testing I had to actually get a proper diagnosis we discovered that I had a nasty malabsorption issue. My pancreas does not make the enzymes that it should and this has lead to various gut problems. Obviously there were symptoms but I had just been dismissing them because I have Coeliacs and I had just assumed it was that causing the problem. So … I am on a MEGA dose of anti biotics for a month (which I actually started 2 weeks ago) and these have made my CFS symptoms worse, uuurrrrrhhhgggg …
Once I finish the anti biotics I can start taking Creon which is just an enzyme supplement and that should help with the malabsorption thing.

In terms of CFS I have started on vitamin B injections and that’s it so far. The plan is to wait till my guy is sorted and then start trying treatments and see what I do and don’t have success with. I will most likely be trying things like Amino acids which aren’t overly invasive. I also now have a ‘Care Team’ which incorporates my Dr, an exercise physiologist and psychologist (who both specialize in CFS) and I also have a social worker to sort out any general care issues at home etc. So all I really need now is for Centrelink (social services) to come to the party and give me some sort of pension and I will be able to relax and hopefully make some kind of recovery …..

I am expecting to see the exercise physiologist in 2 weeks and start some kind of graded exercise. I have to admit I’m dead scared to try this because up to this date any movement that raises my heart rate even slightly lands me in bed for a few days …. If anyone has any personal experience, good or bad with graded exercise I’d love to hear it 

On a positive note, I actually managed to bake some damper yesterday!!!! Unfortunately the effort involved wiped me out so much that I was unable to eat any, hahaha but maybe I can try it today!!