Kangastu's WTF is it guide to Fibromyalgia

Lyrica

2011-11-14T21:08:00.001-08:00

I saw a new rheumatologist about three weeks ago. He asked me why I was there, so I told him that I had been diagnosed with fibromyalgia, He said, very emphatically, that 'there is no such thing as fibromyalgia. It does not exist as a disease.'. So, after about half an hour of going through my symptoms, I asked him, if I don't have fibro, what have I got? He told me that there are about 200 illnesses that can cause the symptoms that are diagnosed as fibro. I told him that yes, I knew that, but they have all been ruled out by the first 40 doctors that I saw. He then said that he'd need to see all my results and scans.

I then asked him if he would prescribe me Lyrica. The outpatient clinics at the hospitals in Perth and Fremantle are the only places that I know of in Australia that will supply Lyrica at the PBS (government subsidised) rate of $5.20, instead if the normal pharmacy rate of $225.00. He said OK, and wrote me a script for three months supply.

So I walked out with three months worth of Lyrica at the grand total of $15.60.

I have just reached the full dose of 300mg a day and am struggling through all the side effects that are supposed to wain after a month or so. I hope that I get a big benefit from it. I have already noticed a bit of a reduction in pain levels. Still wake up feeling like I have the worst hangover in history every day though.

I'll let you know how I go. :-)

Imagine...

2011-10-15T02:06:00.000-07:00

Imagine how you'd feel if you stayed up until 5am drinking and smoking, going to bed and then getting up again at 7am. That's how I feel every morning, even if I went to bed sober at 8pm. Imagine how you'd feel by 2 in the afternoon. That's how I feel by 11am every day.

Imagine how you'd feel if you had a really bad cold ALL the time, and then you got another cold on top of that. That's how I feel all the time. I hope I don't get a cold as well.

Imagine how you'd feel the day after you ran up 10 flights of steep stairs. Then you walked up another ten flights on you hands. That's how I feel after walking from my car to the lift.

Imaging how you'd feel if you ate some really bad chilli. Your stomach churning and all the visits to the bathroom. That's how I feel whether I eat or not.

Imaging how you'd feel after a really loud rock concert. Your ears ringing so loud you can hardly hear anything else. That's how I feel all the time.

Imagine how you'd feel sitting on the sidelines at your child's sports event. Watching all the other parents helping or joining in, while you just sat there, because it hurt to much to even stand there and watch.

Imagine how you'd feel if you jumped off the roof, holding onto a rope, that jarred you to a stop just before you hit the ground. Imagine how your arms would feel. That's how mine feel after typing this.

Now, imagine how you'd feel if no-one believed that you felt all those things and told you it was all in your head. Imaging if, even if they believed you, there was no treatment or cure, and in all likelihood it was going to get worse. Imagine if you still had 30, 40, or even 60 years to live. How depressed would you be?

Friends and Supporters

2011-08-04T04:40:00.000-07:00

G'day all...

I was just chatting with a new 'Fibro Friend' and thought that I'd post.

We were talking about being part of a support group. The friend has a circle of close friends who are quite supportive and doesn't feel the need to join the support group. I don't. I am curious if that is a trend. People needing to go outside their normal circle to get help and support.

I like going to the fibro group. It's good to talk to people who understand. You can talk or vent, and nobody gets upset or frustrated. they just not and sympathise. I like helping the newbies to fibro. Everyone is just so desperate at the start. They talk about the grief process with illness. I reckon it applies very strongly with fibro. There is the fear and worry when you are first sick and don't know what's wrong. Then the relief when you get the diagnosis. Then some hope that something can be done. Then disappointment, desperation and resignation, and sometimes despondency. There is also the determination to do something about it for oneself. Exercise or something. When you are very sick and in so much pain it's hard though.

Helping others by sharing my experiences gives me some purpose.

Life's little (and big) dramas (a bit of a rant)

2011-06-11T23:19:00.000-07:00

I'm sure that my family must think that I have engineered my life in some way to attract as much attention and sympathy as possible. I know it must seem that way. How could anyone fit this much crap into such a short amount of time. I think that most of it can be attributed to bad decisions or choices that I made, which put me in awful situations.

Marriages. The first one was a complete fucking nightmare. She turned out to be a psychopath. The real deal, not just a label I put on her. And of course I was the co-dependent type, which made it incredibly hard to extricate myself. I ended up having to leave the country to get away from her. She was a true 'bunnie boiler'. I was going to write about my life with her, but it was heading in the direction of a Stephen King novel and I had to stop. It was because of that relationship that a career I had spent 20 years building was ruined.

My second wife, who I thought was brilliant (she is in a lot of ways) turned out to be an ice queen. Totally incapable of a loving relationship. As soon as our son was old enough to leave at home alone, she kicked me out. Never mind that at the same time, I was being forced to stop work because of fibromyalgia and would be homeless.

Illnesses. I have always been the depressive (and depressing I'm sure) type. I have tried to end things a couple of times. Seen various therapists and psychs. It has always been a sufferer of what I call 'situational depression'. I have never been satisfied with my lot. Which in a lot of cases was fair enough. But in others was due to my poor decision making and where I put myself. All my life people have had to come to my rescue.

I will never forget how my dad was out in the bush in the middle of the night looking for me when the police had stopped for the day. I had lost the plot and taken off. Then there was the time he had to drive 600km to get me and take me to hospital because I didn't have insurance and couldn't be flown.

Look... I could go on and on here. I'm sure that you get the idea. Life has just been one big drama as far back as I can remember. I have been held hostage at knife point, ended up in hospital over and over, never had any money, been sick or injured in one way or another, it feels. almost continuously.

I'm 45 years old and on a disability pension. Stuck living with my parents. Over 3000km from my only child. I spend most of my life hiding in my room from my crazy mother. I have to modify every thing that I do so as not to upset her. I go to college to study for a job which I have doubts I will ever be able to do. I have very few friends. I'm too sick with fibro and chronic fatigue to go out and meet people.

Now, to top it all off, I have diabetes. Much to the delight of my mother. It's just one more thing to torture me about. Offering me sugar and fat laden food all the time, pinching my healthy food that I buy for myself. It's ridiculous.

There... I feel much better now that I have written that... I should probably delete it. Not post it. But what the hell.

Medical Stuff

2011-05-30T01:29:00.000-07:00

Hmmmm..... funny that I wrote here yesterday....

Just been to the docs and he told me that I have Diabetes now, on top of everything else. It's the hereditary kind. My cholesterol is also through the roof. I have to take pills, but am going to have to do some radical changes to my diet.

All those yummy foods that I was using to comfort myself over having fibro and chronic fatigue now have to go. I was making myself not feel guilty about them before by saying to myself that I can't do anything fun, but at least I am going to get some enjoyment out of the food I eat. lol. Now no more Tim Tams, salami, cheese, chips, cream based curry or Italian. Got to cut down on carbs, wheat, dairy. All the yummy stuff.

Got to exercise too. Have to lose about 25kg. That will be a challenge with fibro and CFS. Going to have to 'just do it', and ignore the fatigue and pain.

So... this is it then... the last of my naughty enjoyments in life bites the dust.

I'll start next week! ;-)

SLEEEEEEEEEEP

2011-05-29T03:53:00.000-07:00

I couldn't take it any more. I had completely forgotten what it was like to sleep more than a couple of hours at a time. I got into that cycle of not sleeping at night, then falling asleep during the day. I was leaving college early every day, going home and falling straight asleep, then waking up after two hours. After that I would be up until two, three, even five in the morning. It was hell.

I am now taking sleeping pills. I have always hated them because they make me feel like absolute crap in the mornings, but it got so bad I felt that I didn't have a choice. So, now I am getting some sleep. I take a pill at abou eight at night, then am usually asleep by ten. I feel absolutely fucking awful when I first wake up, but after taking all my other meds and wake-up pills and having a shower I feel at least 17.8% alive, and ready to tackle the day.

I still get incredibly tired mid afternoon but I am able to force my way through to normal sleep time. I don't really feel that much better yet. Hopefully after a few weeks or months of sleeping most of the night some of my symptoms will improve. In the mean time I am having some wicked dreams.

Not sure what's going on

2011-04-11T18:08:00.000-07:00

I have had some very strange days lately. Since January I have had a big flare-up. Symptoms through the roof. Lots of pain, cramps and exhaustion. Insomnia has been driving me nuts. Fibro fog is a real pea souper.

Before fibro, if I had woken up felling like I now do now every day, I think I would have gone to the hospital. I would have at least stayed in bed. Now it's all just one big blur. I'm not complaining (much), just telling it like it is.

What is freaking me out though, is feeling like I am drunk and out of control. The other day I behaved like a real idiot at college. Couldn't stop talking, stupid jokes etc. I kind of knew I was doing it, but just couldn't stop myself. It was like I was really drunk. I upset some people, and the rest just think I'm an f'n idiot.

I am soooo pissed off with myself. I have worked really hard to fit in at college. I am older than most of my fellow students parents, so it's quite hard work. The speak a different language.

Anyway... I am not sure what happened. My meds? Not enough sleep? A virus? Whatever. I am now keeping a very low profile now. :-(

I feel a bit....

2011-03-28T04:33:00.000-07:00

What's the go... with fibe ro?? Progressive?? YEP!

2011-03-27T03:39:00.000-07:00

Just got back from a great lunch with a friend who also has fibro. We talked about all sorts of stuff. A lot about fibro of course. Comparing notes etc. We both talk to quite a few other fibro sufferers.

We agree, based on our experiences and those of our friends, that fibro is definitely progressive. We are all MUCH sicker than we were three years ago, even one year ago. A year ago I was at the beach on my boogie board or fishing nearly every day. A 5 kilometer walk was tiring, but quite manageable. I was pretty active. Now, the idea of going to the beach make me feel ill. Walking more than a few hundred meters sends me straight to bed. Everything is more tiring and makes me hurt more.

I'd love to know what you think.

An entry when I'm not a mess for a change

2011-03-24T21:25:00.000-07:00

Well this makes a change.... I am doing comparatively well at the moment. My symptoms are still awful. Incredibly tired, not sleeping, pain that makes me wince all the time... but I am still quite happy.

I think that I've mentioned that I am studying full time. It's a huge challenge with fibro. But I am really enjoying it. I am learning a lot and practicing my art again. I am getting back into it very quickly. Mind you... I am spending about 16 hours a day at my computer with the graphics tablet out painting, working on 3D graphics, or doing animation.

I am putting in the effort because I just can't bare the thought of being alive for another 30 years with nothing to do. Sitting in poverty on the pension somewhere feeling suicidal all the time. I HAVE to do something. I am luck to have something that I love. Art, whether it's with brushes, pens or airbrushes (none of which I can physically do because of fibro pain), or on the computer, where I can rest my arms on my desk while I work, is perfect. I can zone out, and for a lot of it it doesn't matter how foggy or tired I am, I can keep going.

I am working very hard at it in the hope that I can work again. For real money. Maybe enough to pay rent and bills. On $400 a week I don't know how anyone can survive. I am lucky to have the opportunity to study. Also that my parents are letting me stay with them. I am pretty freaked out about what will happen to me when they are gone, so I am trying to make plans.

Here are a few samples of the art that I have done in the last 6 weeks. I hope that you like it.

Lyrica - 3 weeks in

2011-03-12T02:06:00.000-08:00

I've been taking Lyrica for 3 weeks now. I haven't really noticed much change in the way I feel during the day, but on about half the nights I am sleeping better. The insomnia is a lot better, but I am having huge problems with cramps. I have to sleep with my legs completely straight. When I bend them the cramps start. A few times I have woken up yelling out. Almost screaming in pain. Then my legs hurt terribly all day from the after effects.

I am not sure what I am supposed to do. My GP is at a loss. Gotta just keep going I suppose.

On the flip side, I am really enjoying my new course at college. I am doing Multimedia. 3D and 2D graphics and animation, Art and Design, Game Design and Project Management. I am determined to keep going with it. I want to stay full time. Normally the work would be a breeze. With Fibro and CFS it's a huge challenge. Mind... everything is a challenge with fibro and CFS.

Here's a sample of my latest work...

Lyrica

2011-02-21T20:29:00.000-08:00

My symptoms have been getting worse and worse over the past few months. I have not been sleeping, which makes the symptoms worse, meaning that I get even less sleep. And on and on in a vicious spiral.

My normal thing was to be completely exhauster all day. Mid afternoon I'd be so tired that I couldn't speek or stay up. I would lay down most days and maybe have a sleep. At night I would lay in bed for ages trying to get to sleep. Finally i would get to sleep, but 11/2 to 2 hours later I would wake up and that would be it. Some times until dawn. I would be very tired, but not sleepy.

I have been tossing and turning over paying out for the drug Lyrica. It's not on the Pharmaceutical Benefits Scheme so you have to pay full price. For four weeks supply it's $80 for 150mg/day up to $135 for 300mg/day. A lot of money when on sickness benefits or a pension.

My symptoms have been so bad that my quality of life was fast becoming non-existent. I couldn't do anything. I have finally bit the bullet and forked out the money.

I have been taking Lyrica for a week now and already I have noticed big changes.

The last two nights I have woken up from very disturbing dreams that really freaked me out. Then I realised that to dream, I must actually be sleeping well enough to get into a dream state. This cheered me up immensely. I couldn't remember the last time that I had had a dream.

So... The Lyrica is starting to work. I can't say that I feel much better during the day yet. Maybe I do but just haven't noticed the change. The pain and cramps still come at night. I am a lot more sleepy at normal bed time, and if I do wake up from cramps or a dream, I can get back to sleep, which I never could before. I haven't noticed any side effects either.

I'll keep you posted...

Things are still progressing....

2011-02-09T22:19:00.000-08:00

So much for f'n fibro not being a progressive illness. My symptoms have been getting progressively worse and worse for years now. Every time it seems to settle down, I get new symptoms. I never know if it's from fibro, the meds, or that I have something else now.

I just wrote the following in an email to a good friend. Thought that I may feel better if I put it here too....

"I’m really struggling with my health just now. Sounds awful, but some of my symptoms are the same as you’d get with cancer and I can’t help myself thinking that at least if it was cancer at least I’d have less time to put up with all this. If it wasn’t for how much suicide would upset and effect so many people, especially Tennyson, I’d have done it long ago. Not an option though. I look at other sick people and get really upset with my lot. Gary is really sick, but he can go on holidays and do lots of stuff. I knew a guy in Bendigo who was in the SAS and got blown up so now he’s a tetraplegic in a motorised wheel chair, and he can do more than me. He goes mountain climbing and all sorts of shit. I just moved a bit of furniture around in the lounge and then collapsed (literally) in bed for four hours, and now my body feels like its been drawn and quartered. Whew. I’m not depressed... really!!!! lol. I’ll get over it."

I'm not trying to get anyone else feeling down, but fuck it's hard sometimes. I don't know anyone who struggles with fibro as much as I do. Maybe it's just that I'm the complaining type. I have insomnia now. I thought that I had it before. But it's kinda like when you have bad colds and think you have the flu, then you get the real flu and realise you really had no idea what you were talking about before. I go to bed, after an hour or so (if I'm lucky) I get to sleep. Two hours later I am wide awake. I often see the sun come up after that. I get so tired that I can't speak, but I am just not sleepy. Most annoying!

Ahhhh fuckit!

Things are going comparatively well thank you very much!

2010-07-23T09:16:00.000-07:00

My life has finally got a bit of direction going on. I have found some meds that seem to be helping a bit (Moclobemide), I am hoping to have my finances a bit sorted soon, I have appealed my knockback for the disability pension and am waiting to hear about that, and I am planning my future.

So... all in all... a hell of a lot going on.

I have decided that I don't like having to live on $30 a week for the rest of my life so am going to retrain. I have enrolled at college. Full time to start with, but I am prepared to go part time if I have to.

I have been seeing a fantastic psychologist who has helped me a LOT! He has helped me sort out a lot of stuff in my life that has been troubling me to enable me to have more energy to deal with the fibro.

Don't get me wrong... Physically I still feel like absolute shit all the time. Everything hurts soooo much. More than 6 months ago. I have more symptoms now. But mentally, I feel able to move forward. In spite of the fibro. A lot of people have given me a lot of encouragement and support. My family and friends are being fantastic. I couldn't have done it without them.

So... THANKS!!

Moving in a direction that's not down or backwards!

2010-07-06T19:19:00.000-07:00

It's taken me a while to get the hang of all this 'fibro' business. I think that I've got it now. I have established a bit of a routine with pacing, resting up so I can actually do stuff.

I exercise. I try to walk about 5km two or thee times a week. I have stopped gaining weight lol and am going to actually loose some now I reckon. I am trying very hard not to get depressed and bored and eat crap food. It's hard because living with my folks I have to eat more or less what they do and they eat a lot of fatty starchy food. Very high carbs.

I have been seeing a psychologist too. He has been brilliant. He's one of those psychs that stops you and tells you stuff. Just what I need. We have talked about a lot of stuff that I was having problems with and I am much better able to cope with the fibro now. I have much better structure in my life and a better understanding of why I have behaved as I have in situations that I have found myself in.

My GP is great also, but hasn't been able to help me much with the fibro. I have tried quite a few different meds. None of them have helped much. Most of them made me much worse. All of the SSRI's that I tried made me very sick. Lyrica looked promising but I can't afford the $132 a month to take it. Just have to bumble on I suppose.

BUT!

I have come to the conclusion (with the help of my psych) that there is no point wondering what the point of being alive is. There are plenty of other things that I can think about. Like just getting on with it. I have decided to go back to college and have enrolled in an Info Tech Diploma course. I am going to do computer animation, graphics, games programming and maybe mobile applications programming. I am not sure how my fibro addled brain will cope, but I have to give it a try.

I could live for another thirty or forty years and the thought of just sitting here feeding my Facebook fish for all that time is pretty nauseating lol. I have to do something and I need to get a job so that I have money and a life!

Trying all the meds out...

2010-06-23T22:00:00.000-07:00

I heard that there are about 250 different medications used in the treatment of fibromyalgia. That's a lot of drugs! There are ones that try to deal with the fibro fog, cognitive side of things and the depression. There are others that try to help with the pain.

It takes weeks and months every time you switch meds. Weeks to get off one and more weeks to phase in the new one, and then weeks for the full effects to happen. I know I haven't got much else to do at the moment... but for fucks sake! This is doing my head in. Especially when we all know that there is no magic bullet out there, and fibro sufferers all seem to react differently to the meds on the market. What helps one person puts another on their back.

So you spend weeks getting off, weeks getting on, weeks waiting for it to kick in, and most of the time nothing happens. Then you spend months buggering about trying to get the dose right.

Every time you try a new med you have to first ween yourself off the one that you are already on. You have all the effects of that. I have found that even when I think a med is doing nothing to help me, when I stop taking it I feel worse for quite a while. Sometimes the side effects of a med just aren't worth the minuscule benefits you get by taking it.

Then you have to start taking the new med. A lot you have to start taking in small doses and build up because the effects on your body are too much if you start on the full dose. It can take weeks to get any effect from a lot of meds.

I have tried some (cymbalta for instance) that had such terrible side effects that I had to cold turkey off them after two weeks. I was house bound for three weeks. Others just did nothing.

Whenever I get a new one I look it up before I start taking it. They all have such scary side effects. What am I supposed to do? have had to decide to trust my GP. To try what he asks me to try. What else can I do?

I am about to try a new one called Amira (Moclobemide (sold as Aurorix, Manerix)). It's another one I have never heard of. I looked it up in Wiki. My Doc has given me a script for it because I am having a really hard time with the messed up cognitive side of fibro. I had a lot of bad reactions to SSRI's. A lot of anti-depressants just made me fat and more depressed. Hopefully this one will help me think a bit better and be able to do a bit more.

I'll let you know how I get on.

June 22, 2010 Press Release from Netherlands: FDA and NIH confirm XMRV findings

2010-06-22T17:43:00.000-07:00

Feb 2011: Turns out this report was a load of crap! They had contamination in the lab from a previous experiment. IDIOTS!

I usually leave it to others to republish these reports, but I have a feeling this one is important.... It's pretty full on. The basic gist is that they have found the XMRV retrovirus in 67% of Chronic Fatigue patients that they tested and now recommend against CFS patients giving blood.

A lot of people will be quite excited about this finding and the decision as it gives a lot of weight to the chronic fatigue diagnosis. I understand that but also find it a bit scary after the way people with the HIV virus were (and still are) treated.

I am publishing it because I think, after reading thousands of pages about fibro, that there is a relationship between fibro and CFS. Happy reading .....

Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'
E-mail | Print | PDF
Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.
In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.

On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).

The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.

The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."

ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.

ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements. ORTHO has been publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 + 31 (0) 315 695211 / + 49 (0) 170 808 9484 + 49 (0) 170 808 9484. E-mail: ortho@orthoeurope.com.

Money doesn't make you happy!

2010-06-17T02:21:00.000-07:00

I have been watching quite a lot of movies lately. All sorts. War. Action. Horror. Thriller. Romantic Comedy. Hundreds of them.

I'll often look up an actor on Wiki to see what other films that they have made and to find out a bit about them.

Funnily enough, I have been spending quite a bit of time in doctor's surgeries lately. I see at least one doctor each week. So... I have been reading all of the trashy magazines that are laying about. Reading mostly about rich, gorgeous, famous people and their lives.

It amazes me how many of them are unhappy. Often to the point of suicide. I know that money doesn't necessarily make you happy. That just cos you are beautiful doesn't make you an expert in relationships. That being super famous can be a bit annoying at times. All those pesky paparazzi and their cameras.

But for fucks sake people!!!!

All those gorgeous actresses. Having so many relationship problems. They should meet me! I would make them happy. I can't work so I'd be happy just following them all over the world. I have actually worked in their industry so understand it. With my fibro mush brain and time not meaning anything any more I'd never get bored. I wouldn't care that they were making more money than me. I am quite amusing. Can cook. Like movies.

Come on then!!! One of you should snap me up immediately!

The Psychologist...

2010-06-13T00:52:00.000-07:00

As is usually the case with fibro victims, I suffer from depression. Pretty deep and dark at times. I will not kill myself! I couldn't do that to my son, or the rest of my family.

So... I am seeing a psychologist. He seems pretty good. Actually has a doctorate in it. He is going to help me structure my days. I have lost all track of time with my fibro fog, so that will be a big help.

I also need relationship help. All sorts of relationships. Although I don't know what I can do there. I am still trying to stop myself from trying to figure out the meaning of life. You know.... 'What's the point of it all?'/ Especially when it all hurts so much and I don't remember it anyway. He, the psych, says that it's pointless to try to figure that out. I can see his point in a way, but it also seems like an important question too.

One thing that he said at the start was that he wanted to separate the fibro and the depression, and that he would help me with the depression. That that would hopefully help with the fibro anyway. That sounded good to me at first, but then...

I was up all night last night with insomnia, thinking too much a lot of the time. I ended up getting up and writing some stuff down to talk to him about. How the hell am I supposed to separate the fibro from the depression when they seem to be part of the same thing. This last week I have had a shit of a time. I can't even remember most of it, including my homework. I have been in so much pain, am so stressed trying to get my shit together, am so tired and feel so sick all the time, I am just getting more depressed about it all.

I hope that it's not too long before fibro is better acknowledged as an illness and someone figures out something that will help.

Doctors, Doctors and More Doctors

2010-06-10T01:38:00.000-07:00

I'm just giving you a chance to read the other posts before I do this one!

Doing Battle With Social Security

2010-06-10T01:08:00.000-07:00

I have applied to get on to the Disability Pension twice now. Been rejected both times. This time I am going to appeal!

The main criteria to get onto the pension are that your illness must be severe enough, it must be fully managed and stabilised, and it must be likely to keep you out of the workforce of at least two years

When you apply for disability here you have to have an assessment by someone appointed by Centrelink (what they call Social Security in Aus.). Both times I have been assessed it was by psychologists. This time was ridiculous.

The way it works is that they have what they call 'disability scales' and you have to get enough points on the scale that your illness comes under. To qualify you must get 20 points, and be able to work less than 12 hours a week. You can get points for each or your illnesses.

I have mild asthma for which I have never had time off work. They gave me 15 points for that. I have severe depression and severe fibromyalgia. The fibro is what is stopping me working. They wouldn't even take them into account because I told them that I was waiting to try lyrica, and was about to see a psychologist. Therefore the illnesses were deemed 'not fully managed and stabalised'.

I tried to explain to the twenty something year old psychologist that fibro is not psychosomatic. That my asthma and depression aren't stopping me working. But it was a waste of time. She was a non-believer. She reported that my fibro and depression were not fully treated and managed so they don't fit the criteria.

(From 1 July 2010 the rules change. From then, your assessor must know enough about your illness or disability to make an informed assessment.)

It's funny (not). You go into the part of Centrelink that handles sickness benefits (which I have been on for seven months) and they all say they can't understand why I am not on the pension. You talk to the pension people and they won't help. They work for the same department for fucks sake!! The sickness people even give me pointers on what to say to the disability people. So bloody frustrating!

I am going to appeal on the grounds that I can't try the lyrica because I don't have $135 every four weeks to pay for it. I have tried heaps of other meds and they just made me sicker. Therefore my fibro is as managed as it can be at the moment. I'll make them ring my GP too and talk to him. He's a bit of a specialist with fibro.

People have even told me that I should stop taking my meds for a couple of days, not shower or shave, wear old crappy clothes, and other things, like ring up and say I am not well enough to drive and make them come to me. Anything to look sicker.

I am not suggesting that you lie. I am not going to. Just be really careful what you say. I know that I am sick enough. Even with any treatments that are available my symptoms are severe enough to stop me working more than 12 hours a week. Keep in mind how the system works and work with it.

My aged parents are having to subsidise me. I don't know why Disability Services think that I would be making any of this up. Why would anyone choose, at the age of 44, to quit their $1000 a week job, end their marriage, move out of their home, 3200km from their only son, to live in poverty with their parents?

I don't know!

Hi! I'm back again....

2010-06-10T00:01:00.000-07:00

Well.... It's been six months since my most recent major fork in the road, and I'm still alive!

Well woo hoo woopdy doo!

My life is really no different to what it was at the start of the year. I have done plenty though. Battling Centrelink (Aussie Social Security) trying to get onto the disability pension (Click here to read about that). Doctor hunting and research and trying new things , medically (click here for that).

I have been having some fun (sort of) too. I am learning how to catch fish. Had a bit of success too. I've watched hundreds of movies. Some of them were pretty good too. I liked 500 Days of Summer, Julie and Julia, Forgetting Sarah Marshal, An Education. Some boy movies too... Shutter Island, The Cleaner. Thanks to fibro fog I can watch some of them a few times and still enjoy them lol. I can also easily forget the bad ones! I've also watched every episode of Weeds, NCIS, Lie To Me, Bones, Gossip Girl, and several other shows.

I have been getting right into music too. I have been adding to my music library. Discovered some great music that is new to me. Everything from folk to hip hop to classic rock. Lots of alternative music too. Regina Spektor, Downsyde, She & Him, The Pixies, Carla Bruni. Been playing my guitar quite a bit too. There's a great site called 911tabs.com that anyone can submit the music to any song to. I find a song I like and then check out the chords to see if I can manage it. Then I play along and make singing like noises. Very cathartic!

Facebook has been taking up way too much of my time. Twitter too. I am sooooo bored with both. Am having a bit of a break from Facebook now (I'll feed my fish and check in tho!)and will say hello on Twitter for a bit I think.

I have been doing a bit of art. Trying to carve rocks into jewelry. Drawing. Computer Art. I like Manga. Been designing logos and clothing for my mum to make for my son. He's into all the skate stuff that is way to expensive to buy.

You've gotta keep going don't you?!?!?!?

2010-03-26T01:03:00.000-07:00

I've just changed my blog template so have a bit of tidying up to do.

Count your blessings!

2010-03-19T01:57:00.000-07:00

I am going to try really hard not to make jokes or flippant comments in this post. This is life or death stuff in a way, and should be treated with the respect it deserves. OK... here goes....

I know it's hard, but you really do have to try and count your blessings. You can joke about it... all the funny things about having fibro fog... make light of your symptoms... but when it all comes down to it, you just HAVE TO count your blessings, or you WILL NOT survive. Even when you can't think of a single one, find something about your illness that is negetive, and turn it around somehow into a positive thing.

Something like... ahhhhmmmm... my wife left me and now I only see my son every three months... goes to... I can concentrate on other things without the distraction and stress of a mortgage. Or ... I am soo f'n tired I can't move ... goes to ... someone else will do the dishes today.

I have written exhaustive lists on the pros and cons of everything. I had lists for the advantages of not working, which had things like 'I can go to the beach or go fishing whenever I want'. On the advantages of moving to Perth (3500km from my home and son) I had that I will be able to see more of my family. These sound like pretty mundane things, I know, but when you are really down, these can save your life.

I have been in deep depression before fibro. Suicidal even. I have felt like that since fibro too. I have wished for cancer, a brain tumor, anything but fibro. I meant it too. And even now, when I am lucid and able to gather the strength and inclination to write in my blog, I am conscious that it is only because I have counted my blessings, and thought about the effects that my no longer being here would have on other people, particularly my son, that I am still here.

If you get so miserable that you just don't want to do it any more, remember that all your unhappiness will be transfered to others if you end it all. Your family (no matter how much you think you hate them, how much you think they don't care) even the people who have to clean up your mess, or sort out your stuff, will all be made sadder. Will all wonder what they could have done. Will never understand.You've seen it in life or on telly... 'I had no idea they were so depressed'... 'Why didn't they ask for help?'

Don't be ashamed to need help. Don't feel useless for not being able to cope by yourself. You are sick for god's sake! If you really need it, for fucks sake ask for help. Keep asking till you get it, and don't be too proud about where it comes from! If you had cancer you know people wouldn't leave you to do it on your own, and I often feel that fibro is worse!

Symptoms Survey

2010-03-17T06:26:00.000-07:00

On Facebook, Fibroduck asked which single symptom people would lose if they could choose one. It was almost half and half between pain related symptoms, and fatigue related symptoms. The main pain symptom mentioned was back and hip pain. Insomnia was mentioned by a lot of people.

Symptom : I can feel the chemicals streaming through my veins!

2010-03-17T05:00:00.000-07:00

Now here's weird thing...

Have you ever had a large injection? One where you can feel the liquid or the medication actually spreading through your body? You can feel the effects of the meds increase as they spread?

That's what happens to me now. Today I had an incredibly stressful situation. I could actually feel the chemicals that my brain released spread through my body. I could feel them effect me. My fibro fog thickened. My pain increased. The ringing in my ears got louder.

I felt it start in my head, spread down my neck, chest, and into my arms and legs.

Then the exhaustion started to set in!

Symptom : Exhaustion! and I MEAN EXHAUSTION!!

2010-03-17T04:20:00.000-07:00

I had never been so tired that I couldn't move before.

It is kinda scary. Like when you can't breath from asthma (which I have). With fibro, I get soooo exhausted that I cannot move... cannot speak... cannot do anything... and it kind of feeds on itself. I get stressed because It takes soooo much effort to move or do anything, which makes it so I cannot go to sleep, so I get more tired and then more stressed.

I have to lay on my bed and, well, just lay there. It can last for an hour, or 3 hours, or longer. Everything hurts like when you have the flue, and there is not a damn thing that you can do about it!

This is at its worst when caused by a stressful situation, like an argument.

see post on 'chemicals streaming through my veins'

Sorry... But this was too funny not to share....

2010-03-14T18:46:00.000-07:00

In 1986, Peter Davies was on holiday in Kenya after

graduating from Northwestern University

On a hike through the bush, he came across a
young bull elephant standing with one leg raised in the air.

The elephant seemed distressed, so Peter
approached it very carefully.

He got down on one knee, inspected the
elephants foot, and found a large piece of wood deeply embedded in it.

As carefully and as gently as he could, Peter worked the wood out with his knife,
after which the elephant gingerly put down its foot.

The elephant turned to face the man, and with
a rather curious look on its face, stared at him for several tense moments.

Peter stood frozen, thinking of nothing else
but being trampled.

Eventually the elephant trumpeted loudly,
turned, and walked away.

Peter never forgot that elephant or the events of that day.

Twenty years later, Peter was walking through
the Chicago Zoo with his teenage son.

As they approached the elephant enclosure, one
of the creatures turned and
walked over to near where Peter and his son
Cameron were standing.

The large bull elephant stared at Peter,
lifted its front foot off the ground, then put it down.

The elephant did that several times then
trumpeted loudly, all the while staring at the man.

Remembering the encounter in 1986, Peter could
not help wondering if this was the same elephant.

Peter summoned up his courage, climbed over
the railing, and made his way into the enclosure.

He walked right up to the elephant and stared
back in wonder.

The elephant trumpeted again, wrapped its
trunk around one of Peter legs
and slammed him against the railing,
killing him instantly.

Probably wasn't the same fucking elephant.

This is for everyone who sends
me those heart-warming
bullshit stories;-)

Hmmm What to do now?!?!?!?

2010-03-09T19:10:00.000-08:00

I am struggling at the moment. My meds aren't working and I don't really know what to do about it. I am seeing my doctor in a week or so. I'll have to research it all myself because the doctors don't seem to know what on earth to do with us do they!?!? The people on twitter are not very patient with my questions and it's hard when you are trying to follow conversations with six people at once. Especially through thick fibro fog! I did get some good links and info from FibroAction

It's hard not to seem like you're complaining when talking about your illness. Especially when you are typing it, not actually talking about it. People can easily misinterpret what you have written. Smileys only convey so much! :s

I am having a big discussion with myself about what to do now. I must be at another phase in the grief process lol. If you'd like to join in, feel free. I need to get my meds sorted. Try and do more exercise. Figure out a job I can do and keep doing. I am going to have a look at some software. Maybe web design.

I think that first though, I will go to the beach. It lifts my spirits tremendously and helps me focus a bit. I am feeling much better today. I accidentally took my night time sleep meds in the morning yesterday lol. Dick head! That's fibro fog for ya huh?!?!?lol

Ok then.... I'm off! Catch you later!

... and then some days...

2010-03-04T19:07:00.000-08:00

...it all just seems way too hard. I sit here, thinking about all the things that need doing, and just can't bring myself to get up and do anything at all. Just to think takes a huge effort.

I promised myself that I would get out of the house every day no matter what. I didn't go out yesterday.

I think about all the things that I could be doing now that I am not stuck in that fucking awful factory, now that I don't have a family to support and a home to pay for(I am still not happy about that. Even though the fibro fog deadens everything it is still like someone is twisting a knife through my guts and heart every time I think about it). I could be out doing whatever I want. Working wherever I want, just because it's what I want to do, or for lots of money.

I could be travelling the world. Visiting friends in Africa, Canada, Europe, Asia. But today it all just seems that little bit too hard even to get up and go to the beach.

I guess I am feeling a bit down!

Ahhhhh fuck it! I am getting up now... that's a start I suppose!

I LOVE MY MUM! revisited

2010-03-03T02:06:00.000-08:00

I am sorry... but I have just got to speak up.

You will have all sorts of experiences with people that you tell you have fibro. Some will just stare at you blankly. Some will stop being your friend because they don't know how to deal with it or are scared that they'll catch it from you. Some will offer you all sorts of advice on what you should be eating, what supplements you should be taking, which doctor you should be seeing, what exercises you should do, what you should avoid eating or doing. Every aspect of your life will be advised on.

You will find that most people quickly become bored with hearing about something that they can't see, don't understand, and in many cases, simply don't believe is real.

I had one of those experiences today!

My stepdad started talking about this 'poor young woman' who has some 'terrible illness' which has basically 'left her bed ridden for years'. 'All the doctors are throwing their hands up in the air cos they just don't know what to do'. Half the doctors 'don't even believe that she has a real illness' and 'how terrible is that! She is obviously sick!''Who would make that up?'

He and my Mother were quite indignant about it all. They showed me the 1/2 page article in the newspaper. I read through it. She has ME/CFS. I kept reading.... hang on a minute I thought... ME... that's familiar... 'Oh fuck!' I said... 'that's what I've got!'.

Their reaction when I pointed this out?!?!?! 'Oh' and they switched off!

Fibro Fog and the meaning of Time!

2010-03-01T18:53:00.000-08:00

Doing The Time Warp!

After the absolute exhaustion, my least favorite symptom is the way ‘time’ has change. It doesn’t mean the same thing at all any more. There doesn’t seem to be any real difference between an hour and 4 hours, or a day and a week. You’ll be cruising along with your life, and all of a sudden 3 months have gone by and you could swear it was only a week.

It’s all part of the Fibro Fog thing. The way it messes with your memories, perceptions and awareness.

In some ways it’s good. When I am stuck in my room, too fucked to move, hours go flying by. The time between Social Security payments seems like hours, not two weeks!

But the hours still fly by at times when I want them to last forever, like when my son comes to stay.

Fibro My Jailer

2010-02-28T19:01:00.001-08:00

Fibro My Jailer

I was inside for two years before they even told me the reason. I’d consulted thirty eight professionals before I found one willing to give it to me straight. He said I was in for a life sentence, but there may be a chance of parole, providing I exhibit good behavior. ‘At least it’s not a death sentence’ he said, but there have even been questions regarding that now.

I’m still not sure what crime that I have committed. Was it something that I did? Was something done to me? Did I behave in the wrong way or hang out with the wrong people? I will probably never know. There are people looking into it though.

When I first came in I went through a lot. They jabbed me with needles, stuck things down my throat, up my nose, and other places. They put me inside big machines and bombarded me with loud noises. They even put electrodes on me feet and legs and shocked me with 300 volts. All the while, they took hundreds of pictures. ‘Evidence’ they said.

My conditions in here now aren’t as bad as some have it. At least I am allowed to get about quite a bit. They even let me do a bit of work some days. It’s incredibly tiring though. Some inmates are confined to their cells pretty much twenty four hours a day. Unable to move without having great pain inflicted on them.

Luckily, in a way, the days mostly go by in a foggy blur. I don’t remember most of them. Maybe just bits and pieces anyway. Some days are better, some worse than others. The cries in the night are getting to me though. I toss and turn. Wake up sweating and cursing. It feels like the cockroaches are crawling up and down my legs. Sometimes it gets so hot in my cell I think that I am going to pass out.

I have started having some kind of panic attacks. Maybe it’s the solitary confinement? I get so confused that I don’t know what to do or where to go. I see things and hear things that aren’t there. Like whispered messages running around my head. I have very black days, more and more.

They offered me counseling. Therapy too. I went to a group session but they were all to wrapped up in their own problems and didn’t want to know about mine. I don’t see the point in discussing my sentence with them. They live outside and couldn’t possibly understand what it’s like being stuck in here. I am sick of trying to convince everyone that I’m not mad, not making it up, that it’s all real and not my fault… not of my own making. I didn’t have a choice. I especially don’t want them to know how vulnerable I feel.

They have given me drugs. I don’t mind them. The days go by very quickly, and I don’t care so much about being stuck in here. Luckily the pills squash my anger. I know I’d be in big trouble if that got out. Sometimes I almost forget where I am and laugh along with the non-inmates and their jokes about my sentence. Other times I just like to stay in my cell and listen to my music. Completely switched off from it all.

I worry about my relationships with my family and friends outside. They don’t understand why I am here either. They feel guilty too. Somehow responsible, but unable to help me get out of here. I see the way my son looks at me. Accusing, angry and sad. That I can’t join in with all his things now I’m in here. With me being in here, I wonder if I’ll ever get to sleep with my wife again.

I have been shunned by many. They don’t want to know what I have done or why I am in here. They don’t really care and I don’t really blame them. They have their own problems. I get less visitors as my sentence goes on. I mind less and less. I am tired of trying to explain why I am in here. What may have caused it all to happen, and with there seeming to be so little hope of me ever getting out.

When I do get to go outside, it’s kind of strange. People who don’t know who I am treat me just like a ‘normal’ person. I don’t have a uniform or sign saying ‘lifer’ on it. I don’t look any different. They can’t know. I try not to let them find out.

There are many more professionals working on my case. I have several appeals yet to make. You never know, I may get out of here one day.

Or will they find me hanging in my cell one day??

Hmmm I was just thinking.... and some stupid shit people say!

2010-02-27T04:28:00.000-08:00

People ask questions all the time that they don't really want to hear the answers to. Like: How are you? Are you in pain? Do your meds work? Are you really sick? Have you seen a psychiatrist?

Want a t-shirt like this? CLICK HERE

And they say things that give me the absolute shits too! I expect that they annoy a lot of fibro sufferers too. Like : You don't look sick! You look fine. And they say it as if it's a challenge!!!! My mum told me that her naturopath said that I should come see her... that she would cure my fibro. My reaction was (with fingers crossed to ward off evil) that she must be a charlatan if she's making that claim and that there was no fucking way I was going to her! Mum is also always trying to get me to see psychologists, with the inference that it's always in my mind.

I was chatting with an 82 year old the other day and all of a sudden I realised that I could have as much of my life in front of me as I have already had... The thought of having to spend the next 40 years doing what I am doing now (which with fibro isn't much) struck me like a sledge hammer! Fuck That!!! It's time to get moving!!!

No matter how little you care for life, you really really fight for the surface when drowning. (Well I do anyway lol)

Fibromyalgia has 'no physiological medical consequences'. LMAO What wanker said that!?!?! Oh... and it's not progressive either! LMFAO Wankers!!!

Those people on Twitter whose only tweets are about how much it hurts today or how hard life is with fibro do not cheer me up at all!!

Health is merely the slowest possible rate at which one can die.

Some days it all seems just a bit too fucking hard… Then I meet someone with so many more challenges than me that seems to be surviving it all….

Health nuts are going to feel stupid someday, lying in hospitals dying of nothing.

So Many Questions, So Few Answers....and some terminology too

2010-02-27T04:12:00.000-08:00

I'll add to this list as I get more...

What is a 'Flare'? A fibro flare is when all your symptoms suddenly get much worse. It can last for any period of time. A day, a week, or years. All sorts of things can trigger it. Another illness, stress, overexertion, whatever. Everything is dramatically worse. You are waayyy more tired. I get so tired that I literally cannot move. I just lay on the bed. I often can't sleep though. Everything hurts so much more too. I can't bear to be touched. Just the thought of it upsets me. Noises! Ticking, rattling, bouncing balls, tapping fingers or nails all drive me mad. I get incredibly angry at them. My fibro fog gets too thick to see through. I daren't drive a car or anything.

What causes Fibromyalgia? They (meaning the boffins) don't know. So many people have different things going on when they get fibro. The most common ideas are: Accident or trauma, virus, stress, infection, hormone imbalance, brain chemical malfunction, or that it may be genetic. Personally, I think mine came from stress or a virus that I had in my head. I was under a lot of stress at work, had a series of work injuries, then had this weird thing go wrong with my tongue, that the neurologists say may have been a virus.

Is It Catching? Not as far as they know! But then I recently read that chronic fatigue syndrome (which some say is related to fibro) may be caused by a retrovirus (click for article) so you never know?!?!?

Does it kill you? Fibro is deemed NOT to be fatal. It's not supposed to be progressive or to damage actual body parts. In my experience it is progressive. Meaning that it does get worse with time. In the UK they have started attributing deaths to Fibro. Suicide is the biggest thing. I nearly did it, but luckily came to my senses and thought how it would effect my son. I asked for help and got it! I read that in the UK cases of suicide have been documented by the Coroner to be directly related to fibro. BUT DO NOT KILL YOURSELF OVER FIBRO!!! or any thing else. You will always be missed and others will be upset by your actions no matter what you think! Thinking that is pretty much all that's keeping me alive a lot of the time!

Are people with higher IQ (ie more intelligent ) more likely to get fibro? This is something that I have heard questioned recently, but haven't seen any data on. I think the idea is... if you use your brain a lot more than the average Joe, are you at higher risk?(I am extremely intelligent and have fibro, so the figures for people sitting at my computer are 100%). We'll just have to wait and see.

Do pain killers help the pain? From my own experience, not at all, but it varies. Most people seem to have other illnesses with fibro. I don't. So when they take pain meds there are things wrong with their body that can be helped by pain meds. All of my pain comes from the fibro, so there is nothing actually wrong with the muscles, joints etc, my brain just thinks there is, so there is nothing for the pain killers to work on. I will ask more questions about this though.

Things Are Really Different Now! (Fibro Fog)

2010-02-25T18:16:00.000-08:00

Things really are very different now. That's a bit of an understatement! It feels like I have been chewed up and spat out.... into a gale force wind... and then picked up by a tornado... dropped in the ocean... caught by a tsunami...and washed up on a very sharp coral reef... a long long way from home! (several times over to boot lol)

One of the things that I consider has saved me is Fibro Fog! I love it and hate it. Mostly hate it, but am thankful for it's effect sometimes.

Wikipedia says of fibro fog: "Many [fibromyalgia] patients experience cognitive dysfunction (known as "brain fog" or "fibrofog"), which may be characterized by impaired concentration, problems with short and long-term memory, short-term memory consolidation, impaired speed of performance, inability to multi-task, cognitive overload, and diminished attention span. Fibromyalgia is often associated with anxiety, and depressive symptoms."

Basically, your brain turns to mush. Figuratively of course. You can't think straight any more. You can be doing something , and doing it well, and then someone will say something or something will happen to distract you, and it's all gone. You can have no idea what you were saying or doing.You have no idea how many times I have had to go back to the top and reread this, to that I can continue on down the page.

I spoke to one woman who had worked in IT for years. She went into work one day and sat down. She went to turn her computer on and couldn't remember how to. She nearly had a nervous breakdown.

I have had similar things. I was running machinery. Had been doing it for years. Same machine every day in the same way. I started having panic attacks all the time because I would think that I had forgotten something when I hadn't, like a date change on a label. Other times I would forget and wouldn't realise for ages and have to re-date thousands of products. You get to the point where you just don't trust your own mind any more. It's a pretty freaky thing! I would have to ask my co-workers to double check me all the time.

Time has no meaning any more either. I'll try to explain how it feels to me...

Imagine....you are going along in a car, things gradually come towards you, like a big tree on the side of the road. It comes slowly, but as you get closer it appears to get faster, then zzzzip... it's past in a flash. It recedes into the distance really fast and then its just a dim memory. That's how my days are. I am aware of things I am going to do. I do them, but once done the memories recede quickly. So that memories of things I did this morning don't seem any more fresh and recent than the memories of things I did ten years ago.

I continuously forget what I am talking about, why I am at the shops, what I have walked to the kitchen to get, whether I have taken my meds. But I can remember the actors from a movie, their names, faces and voices, from a film I saw 20 years ago.

I get confused too. Sometimes not even realising it. I took my night time sleep meds in the morning the other day. They are in colour coded pill containers (with all the days of the week on them and little compartments so I don't accidentally OD) and I picked up the dark one, knew it was the dark one, and took the pills anyway. I don't know why. I didn't even realise until an hour later when I looked at my pill container to see what day it was (I can never remember, but if the lids are open up to that day, I know) and the night one had Thursday open and the morning one friday.

I have had to mark all my relatives houses in the road atlas and have to look them up and follow the map all the way there, even if it's just a few kilometers, because I get confused about where I am and where I am going.

I feel emotionally drained too. Like when you have been crying about something for hours, and then when you have stopped, everything seems weird in your head. Your face and body feel 'funny'. It's hard to describe.

So... why do I credit Fibro Fog with saving my life? Because it deadens my emotions like being on powerful drugs. Nothing much seems to effect me any more. So whilst all those terrible things were happening... my marriage over... too sick to work...moving away from my son... everything feels a bit like it was in a movie or a dream. The pain is deadened a lot and even though it was only four months ago, it already feels like ten years has gone by.

Some say it's like when you are very sick, bordering on delirium. Flu like symptoms. Others like being drunk or drugged all the time. Whatever, it can be disconcerting at the least, or downright scary.

More on Fibro Fog and it's effects on time HERE

So how many people gotta say you're an Artist before you are one??

2010-02-25T03:18:00.000-08:00

Don't you hate it when fibro causes...

2010-02-23T21:58:00.000-08:00

... you to have panic attack because you have thought of something clever to write in your blog, but you don't have a piece of paper to write it down on, or worse still, you do have a piece of paper, but no pen, or even more worser still, you are driving on the freeway and there is nowhere to stop and write on the piece of paper with the pen that actually works for a change! Bugger!!

... you to walk around for three days with a large letter 'P' written on the back of your hand to remind you to do something... and you end up giving up with a migraine because for the life of you, you can't remember WTF the 'P' was there for. Then later, you think that you may have done the thing that the 'P' was there for, but just can't remember that! Bugger!!

... you to get home from shopping with bag loads of stuff... you get cooking dinner... and then you realise that you went to the shop to get the most important ingredient... which you had written down in case you forgot... and you realise that you forgot to look at your list... so have to go back to the shop again! Bugger!!

... you to forget someone's name that you really really need to email. You have their email address in your contacts, but you just don't know which person it is you want! Bugger!!

... you to get seasick... when you are just on a boogie board at the beach! Bugger!!

... you to have yet another symptom... you go to the doctor, then the specialist.. then the hospital or pathologist... have even more tests and scans or whatever... and it turns out to be yet another symptom of fibro... not DVT or brain cancer or arthritis! Bugger!!

... you to need a brain transplant cos yours has turned to mush.... and then you find that you can't get one as big! Bugger!!

... you to have soooo much time on your hands that you become really anal about your music collection and you give every song a rating out of five, genre, decade, whether it's loud, mid or quiet, and ten other things. Half way through the project you wonder why you ever collected the 18 000 songs you have in the first place because most of them don't even rate higher than 3 starts anyway, and you only listen to the same playlist of 1000 songs over and over anyway! Bugger!!

Stuff that happened....(2) (Fave Medical Tests)

2010-02-23T18:42:00.000-08:00

I just fucking love medical tests!. You know... I added up the cost of all the blood tests, scans, doctor's visits, x-rays, MRI's, lumbar punctures..... and it came to over $200 000. Thank God (with a capital G) for medicare hey?!?!?

It was doctor number 40 (a neurologist) who finally gave me a diagnosis of Fibromyalgia. It took me two and a half years to get to see him. The only reason that it was so quick was because I had a very good GP who just kept sending me to everyone that she could think of until I got my diagnosis. It was funny, cos she is a 'non-believer' in fibro.

To get to doctor number 40 I went through some serious testing. I had several MRI's of my head, then a full body one. I had CAT scans, x-rays, bone scans and ultrasound scans. I had soooooo many blood tests. At one hospital visit the pathologist came to my bed with my own special trolley and she laughed saying that she had never taken so many samples from one person in one go before. I wasn't laughing at the time.

I had a lumbar puncture in a casualty room with everyone walking by and people watching on. It took three doctors because two of them had only ever done it on dead bodies in the lab for practice, not on a real live person. Of course, doctors being like they are, this was all discussed in my hearing. Just to make me feel comfortable I reckon!.

Now I have seen lumbar punctures on TV. Where great big burly football types break down and cry at the pain. So you could say that I was a little apprehensive. It's funny though, when someone sticks a fucking great needle in your spine, you tend not to move around much. lol. Needless to say... It really really hurt! And all over too. No fun.

I had to lay still for four hours and then they put me in an ambulance and sent me 150km to the city, to the Neuro hospital. That was funny too. I had been in hospital before. You know that if you arrive after 6 pm all you will get to eat is a crappy sandwich. So I asked the ambo's to stop at McDonalds so I could get a feed. So there's me, in hospital PJ's, out the back of the ambulance, into the cue for my Big Mac. I did cop a few looks. LOL.

Now.. the lumbar punctures were pretty fucking awful.. but have you ever had a 'Nerve Conductivity Test'?? If you have... You poor bastard!... if not... death is the preferable option.

They put electrodes on you. I had one taped to my ankle, and the other one they moved all over my foot, up my leg, around my knee and up to my thigh. At first it wasn't too bad. The display said about 80 volts. Almost felt kinda nice. Zap.. Zap...Zap.. every couple of seconds for about 5 minutes.

Then the Tech said 'OK.. all set to go! I'm going to up the voltage a bit now'. Well holy Fuck!! He put it up to 300 volts. It was like someone hitting me on the bones with a fucking huge hammer. Every couple of seconds for nearly 30 minutes. I would have cried if I could. There were tears streaming down my face. I think that I wet myself a bit too. Whack! Whack! Whack! I couldn't even speak to complain. Every time I took a breath to say something... Whack! again! By far the worst test I have ever had!

I have met other people who went in for this test, but not anyone who has let them finish. I am so dopey that it never even occurred to me to pull my leg away and say STOP!

TBC...

Always Look On The Bright Side of Life! Whee hoo Whee hoo he hoo he hoo!

2010-02-23T05:39:00.000-08:00

To every aspect of Fibro there has to be an upside.

I have already talked about the benefits of Fibro Fog (CLICK HERE to see). Here are some other symptoms of Fibro and their benefits...

Appearance - I have just thought of the number one benefit of having Fibromyalgia! No matter how sick and tired that you feel, you always look great. Also, It's not like those other crappy diseases like cancer, you don't lose weight and look all gaunt and half dead! You will look all nice and healthy and plump.. unless you wipe yourself out every day trying to keep the weight off!

Insomnia - Things are much quieter at night so it's easier to concentrate through the fibro fog. It's less busy on the roads so you can shop at the 24 hour supermarket and always get a parking spot close to the door. Saves on the leg pain! You don't have to look after the kids cos they're asleep! There are often great retro movies and re-runs of shows that you missed late at night. It's cooler at night so you don't sweat as much.

Restless Legs - When you get on the bus , tram or train and there are no seats, it's OK, cos you can't sit still anyway. When you drive a long distance you are safer because it forces you to stop and get out to move your legs around every hour or so. When you are in bed with your other half and they complain about you hogging the bed, you can blame it on your restless legs.Or better still, when you have had enough of your other half and don't want to sleep in the same bed with them any more, you can move into the spare room and blame it on your restless legs (and insomnia).

Fibro Fog - Even If you remembered their birthday you can pretend that the fibro fog made you forget. You are not as afraid of stuff, like sharks and falling off buildings, because the fibro fog has fixed all that kind of thing. You could never remember people's names before, but now you have a legitimate excuse. Just when you were about to say something really embarrassing and you managed to stop yourself, you can say ' what was I going to say?' and feign memory loss when they hassle you about 'what were you going to say....??'.

Medications - You get to try out all the good drugs! Opiates, uppers, downers, in betweeners... and different ones every month because none of them really work anyway, but you have to go through the motions. Also I have found that meds and other chemicals effect me quite differently now. I couldn't use patches to give up smoking because within minutes of putting one on I was in unbearable agony and had to rip it off again. So I had to get the special pills, which turned out to be a lot cheaper, thanks to Government subsidy, and they worked a lot better.Some anti-inflammatories make me itch violently from head to toe so badly that I try to rip my skin off, but at least they don't make me throw up now, and it takes my mind of having fibro! Tramadol, which I now take every morning, used to stop pain in my body, but put me to sleep. Now they don't make any difference to the pain, but it's like I have taken speed and extasy at the same time. Which I don't alltogether mind!!

I'll add more as I think of them. Please add your own suggestions below...

Natural Therapy (I can't afford retail therapy on sickness benefits!)

2010-02-22T22:58:00.000-08:00

I am lucky that I have fibro!

When my wife decided a couple of months ago that after twelve years together we were splitting (for no good reason that she could tell me), and I had to give up work because my fibro was so bad, I had no job, no home and no money.

I was forced to leave my home and son (which was 200 kilometers from the beach) and travel 3500 kilometers and move in with my mother, who lives only 10 minutes from the beach.

At first it was just a way to get out of the house and away from my mother. Then she started coming with me. Then I found a beach where it was too far for her to walk to the water, that she couldn't swim in anyway, cos the waves are too big most of the time.

Now I go for the NUTURAL THERAPY of it and the exercise too. I take my boogie board and go for an hour of trying not to drown nearly every day. Some days I am the only person on the whole long stretch of white sand. Some days it is packed.

When I'm there at the beach, in the water with my boogie board... and the waves are piling in... I feel like I have soooooo much strength that I could almost hold them back...

This is my actual beach!

Then a big wave rolls over me and I am face first in the sand, struggling not to drown, fighting for the surface, hanging on to my boogie board for grim death, gasping and coughing when I make it up. It's kind of like the rest of my life really!

Thank God (with a big G) that I have Fibromyalgia!!

The Advantages of Fibro Fog

2010-02-21T22:24:00.000-08:00

I have fibro fog really badly. It feels like I am kind of drunk or stoned. Time has no meaning any more. If I did it this morning, or ten years ago, the time line gets all mixed up and all the memories seem years old. Also, things just don't seem to effect me as much any more. So....

When your wife kicks you out unexpectedly just cos she wants to be on her own, the upset and depression wears off after a couple of days, cos it feels like it all happened years ago.

When you have to move 3500 kilometers from your ten year old son and he only flies over for the school holidays, the time in between visits flies by and it only feels like he just left, even if ten weeks have gone by. Also, the 3500 km drive goes by in a complete blur!

When you have to work in a shitty bread factory slicing up to 5000 loaves of bread an hour, put them into bags with tags and then make sure they get into crates, a ten hour shift feels like no time at all. (you do have to watch out for sharp slicer blades and stuff though)

When you only get paid $450 a fortnight and you have to pay out $350 in bills, all the time that you have to sit in your room at your Mother's house (cos you can't afford to live anywhere else) avoiding her doesn't matter, cos it flies by and you don't remember it anyway. The fact the you only have $50 a week for everything including petrol doesn't really matter any more either.

Basically, you have no 'time-line' any more so you can't get bored. You don't remember anything enough to get bored with it. lol

(For a more serious post on fibro fog click here)

What fibromyalgia feels like to me - The gory details !! lol

2010-02-21T05:30:00.000-08:00

Now, fibro is different for every person. Most also have other illnesses like ME, Chronic Fatigue Sindrome, arthritis, lupus, and a big book full of others. As far as I know, I have fibro on it's own. I used to say 'just fibro', but there is no 'just fibro'!

Some fibro sufferers have more pain. Some have more 'fibro fog'. I am with the latter group. I do have a lot of pain, but it's the fibro gog and tiredness that I am not coping with.

I'll try to remember how my illness progressed. It started in August 2007 and is quite long....

Woke up one Friday with the left side of my tongue completely slack. Went to the doc's on Monday. The wrong doctor, because he sent me home with 'If it doesn't get better or you are worried come back in a couple of days'.

(This was the same doctor who diagnosed me with 'beer drinker's elbow' after I had been bitten by a spider and ended up with golden staph)

My tongue got about 75% better over a few months, but in the mean time the fibro symptoms started. The first was a feeling of swelling that started at the left corner of my mouth and over a few days spread to the whole left side of my head. The more tired I am the worse it feels. STILL!! It effects my vision as if it really is swollen. Very off putting.

This is what it feels like I look like, but not what I actually look like! lol

Next was a 'hot patch' on my right shin. Very hot. Then a numb patch on my left leg above the knee. Then feelings like burning followed by iced water down my legs. I also started to get really effected by heat, which was pretty inconvenient as I worked in a bakery with an oven bigger than my house.

(I have to refer to my list here... I'll just type it out to give you an idea...)

I have constant flu-like symptoms. My face and upper body feel sun burned even though they are not. My jaw aches a lot of the time. I get blood noses (which I have never had before). Migraines, sometimes every day for a week. My mucous membranes are all dried out, no matter how much water I drink. Tinnitus is much louder. Vision gets weird and blurry. I am a very moody bastard and get logarithmically worse for each hour I am awake.

I get very depressed, because I am so tired and in so much pain. Then I get more tired and more depressed and then I can't sleep so I get more tired and more angry and more depressed and and and...

I get very dizzy if I move my head a bit too quickly. Which can actually be quite good fun when bored. lol. It's very hard to concentrate and I get distracted at the slightest thing. I am always forgetting what I was talking about or forgetting to listen etc. Can be very dangerous when driving. There is absolutely no multitasking any more.

My neck and shoulders get very stiff and sore. A bit like stress tightness, but more burning like. I spend a while here typing and feel like I have just dug a ditch.

One thing that really freaked me was the loss of sensation internally. I can't feel breath going in and out of my lungs or through my airways. I can't feel it when I pee.

Other things hurt a lot more or differently. I had never considered an orgasm painful before, but it must have a kind of pain component cos they really fucking hurt now!!! That's if I am not too tired and depressed to have the slightest interest in anything sexual.

I get very annoyed by certain types of sound. Not necessarily loud ones. I love loud music. Things like tapping feet, bouncing balls, rain on a tin roof. It kind of hurts and I snap very quickly at who's making the sounds.

I have incredibly sore muscles, ligaments etc. Really really bad pain like muscle burn from over exertion. Except I haven't exerted myself. With the dehydration, my skin peels off my hands and feet. My feet get very tender. Especially if I am standing for a while.

I get pains in my calves like deep vain thrombosis. Cramps in my legs and feet all the time too. Sometimes there is the pain of a really bad cramp, but no actual cramping of the muscle. My feet and legs feel swollen. The joints feel like they are actually broken at times.

This is getting boring... I'll just give you the worst of the rest. I'm not even half way though my list...

Muscle spasms, restless legs, heat effected, insomnia, irritable bowel and bladder syndromes, palpitations, back pain, front pain, erectile dysfunction, memory loss, lack of libido, lack of appetite, frozen joints, exhaustion, depression, odd effects from medications, pain pain and more pain...

Fuck it! You get the idea. I can't even throw a ball or ride a bike.

You know, the pain is pretty bloody awful, but after all the scans, x-rays, ultrasounds cat scans, MRI's and other tests and examinations showed that there is nothing actually wrong with any of my muscles, ligaments, bones, joints etc, I could put up with it. Even with the fact that pain killers don't do anything to stop the pain because there is nothing actually wrong with those things. It's all to do with nerves and brain responses being screwed up.

I could put up with it and keep working or whatever. If only I wasn't so fucking tired all the time. Even if I sleep 12 hours every day I am still exhausted. Even with 12 hours and a nanna nap I am still exhausted! It is completely debilitating!

I have typed way too much and my arms are killing me.

You may have some or all of these symptoms. You may have many more. I hope not though! lol

The end!

F#@& the 'Spoon Theory'! It's sooo 20th Century!!

2010-02-20T22:26:00.000-08:00

I have a better one, for men...

I was trying to explain my exhaustion from fibro to my 10 year old son. Then it came to me...

The Video Game Theory!!

You know when you are playing a game like Halo or Half Life, you get health points, life points and stamina points?!?!? Usually 100 to start you off?!?! Well, now I only get 10 to 20 points to start my day, and if I'm not careful I can use them all up in the first half an hour. Then I am wrecked for the rest of the day. If I keep on going, I can use up the next day's too, and even the day's after that.

Same as in the game, I don't die when I run out of points, but I can't move until I have rested and they have come back again.

He understood that completely!! He thought for a while... looked at me... and said....

'Shame we can't google you and get some cheat codes for you hey Dad!?!?!'

Kids!!!

Stuff that happened....(1)

2010-02-20T05:32:00.000-08:00

After my wife decided that we were separating, I had to decide wtf I was going to do. I was already having to give up work because of the fibromyalgia. It was just getting worse and worse.

So I was going to have no money and nowhere to live. The only option seemed to be to move back with my folks in Perth, three and a half thousand kilometers away.

Now you have to know my Mum to truly appreciate her. When I told my sisters and brothers that I was going to live with her they all looked at me as if I was mad. I guess I was. I really didn't have a choice though. Where can you live on $220 a week when you already have $150 a week in debts??. It's not like they were offering me their spare rooms!

My mother can be a challenge to be around! I will leave it at that. I am living under her roof after all. Now don't get me wrong.. I love my mum. Everybody loves their mum right?!?!? Suffice to say, I spend a lot of time in my room with my computer, the TV or my music on.

We have had some huge arguments. I have said some things that I should not have said. Note that I don't say weren't true! Mother just puts it all down to my mental sickness, Fibromyalgia.

I am very lucky in that I don't have to cook, pay bills, or run a household. Mum makes me some very nice clothes too. Fibro fog deadens everything anyway.

2010-02-20T00:08:00.001-08:00

Anyway... enough said about the loving wife. lol.

So... I didn't write yesterday. Don't want to wear myself out all at once.

I went to a coffee morning with the local fibro support group on the river foreshore on the other side of the city. Beautiful spot. I was early so had a wander around.

I noticed a film crew working and went over for a chat. I used to be a lighting director, floor manager, production manager etc in a past life, so was curious. They are making a TV mini-series of one of Tim Winton's books. I have wanted to get back into the entertainment industry for years but haven't been able to. Oh well.

Had a great time with the mob from the fibro group. ;-). We chatted about all sorts for hours. They are a great bunch. Some are new to fibro and others have suffered for years. They are great for morale. I highly recommend joining a support group if there is one in your area. Don't be shy. It is always good! Nothing like crying with someone who understands! Actually, we just laughed.

I kept thinking back to the film crew. If you have fibro you will understand... if you don't... I can only do stuff for short time each day. I have worked in film before. It's a short period of setting up. Then you sit around for a while whilst the talent do stuff, then you shoot for a bit, then move to the next spot. Perfect for a fibro-ite!!

So I went back over to see them. I managed to get to see the production boss. He was great. I told him my story... No work, no marriage, no house, nothing, ... with nothing to do. Asked for a job. He seemed pretty interested. Took my details and copied them to give to other departments too. Maybe I will be able to work!

Then today...

I actually painted a picture. I did a watercolour and ink pen painting for my niece who has a birthday this week. My arms and shoulders feel like I have just dug a huge ditch, but I have a finished piece. Feels great. I haven't been able to do any art since last October.

My Big Fork In The Road...

2010-02-19T06:58:00.000-08:00

Things haven't been particularly easy for the last few months. And as you will know if you have fibro, stress makes everything worse. Here's what's happened...

I've hit a bit of a fork in the road... I had been diagnosed with fibro about 9 months before, and it was getting worse all the time.

I was starting to plan on giving up work. I was already not coping at all. I'd get up, my son would get himself ready for school because I couldn't stand up. He'd go, then I would get ready and stagger off to work at the factory. I'm sure that I shouldn't have been driving. I didn't have an accident, but I'd get to where I was going with very little recollection of the trip.

I would finish the day in a blur and then drive back home, with very little memory of the day. I'd lay on the couch and fall asleep. Too tired to eat. Then the next day would do it all over again.

This had been going on for a few months. Other things were going haywire too. I knew that things were not 'right' with my wife. I was stressing about our marriage all the time. I kept asking if everything was OK and she would say yes, and have very good explanations for the things I was worried about. I would put it down to the fibro and me just stressing and being paranoid from the fibro.

This went on for a while. But in the end I couldn't cope. I lost it one day. Yelled and threatened and smashed stuff. Then walked out with all my meds and a bottle of vodka. Luckily I went to the hospital and asked for help and didn't do what I had planned. The thing that stopped me was knowing how it would effect my son. I couldn't do that to him.

Anyway, my wife grabbed hold of what I had done and used it as a catylist to end our marriage. I reckon she had been planning it for ages. All that time I was worried and asking questions, she was lieing to me and planning her new life without me. One night I really pushed her. Told her that I had to know what was going on. She just said 'It's over. I don't love you any more and I want to be by myself.'

I know I was worried, but that wasn't what I expected. I tried for two weeks to change her mind. She wouldn't have a bar of it. Within 12 hours of telling me, she had organised for a boarder to move in so she could keep the house. Within a week she had closed the joint savings account and given me my half. Withing three weeks all the custody and separation documents were lodged with the court. Four weeks and I was gone. That was it!

I was way too sick to deal with any of it and way too sick to work anyway, so I gave notice and left. I just couldn't keep it up. The only reason that I had stuck it out for so long was because I was doing everything I could to pay the bills and keep a roof over my family's heads. Now I had no family and no roof.

I still am very angry about it all. I said some stuff that maybe I shouldn't have. I wrote a lot on here that I have now deleted. I feel like a complete mug. Used and abused. I am not the sort to be overly mean though (except in my thoughts and dreams lol), so lets just leave it at that. You can use your imagination.

So... my wife finished with me, I had to stop work, and because I have no money, I have had to move back in with my parents for a while. That has it's good and bad points. The main bad one is being 3369.1km from my son. He comes over every holidays though and we have a good time.

It's taken me four months to get to where I can write about it calmly. Luckily the fibro fog bluntens everything a lot. I have had some good support from my family and got in touch with some great fibro support groups. I reckon the 'Men With Fibro' guys (and gals) literally saved my life.

So I lived through it all and am surviving. Just!

(Part 2...The serious side...)

Well... here goes!

2010-02-19T06:48:00.000-08:00

Well there I was.... everything just cruising along... just dandy like... when WHAM!!! Now I can go fishing whenever I want.

Don't really feel much like it though, and blimey it hurts if I do go!

I don't even know if I can be bothered doing this blog. I'll just have to see how I go.