Dreams

As the years pass, my childhood dreams pass me by, one by one.

Whether incomplete, unsuccessful, untried or made impossible, they fade and leave a hole no new dreams can fill.

Lying here in full body pain, constant dizziness, nausea, headaches and chronically fatigued, I have no dreams but to see tomorrow. To hope for a less painful day, to get outside and sense the world again.

Don’t grow up to be me.

I am grateful for what I accomplished prior to my illnesses. Memories are all I have, and I have many to last.

Remaining positive is my toughest test.

Boredom, the new disease

So I have ME/CF (I refuse to put the ‘S’ at the end for it is NOT a syndrome) and Fibromyalgia and am taking all sorts of medication, but the worst (after the symptoms, and the symptoms the drugs cause) is the boredom.

I, like most others with a chronic illness, still think and feel the same now as I did before my diagnosis. Yet I have zero (mostly negative) energy to do anything. Which leaves me with thoughts and feelings I cannot act upon for lack of energy.

Meaning I’m bedbound yet crave to do all the things I have always done, but even going to the local cafe by myself is impossible as I have no way to get there. No car (can’t afford a second one) and I can’t walk that far.

So what to do all day? Reading sometimes brings on a dizziness attack, walking to the living room leaves me breathless so the rest of the house is pretty much out of bounds.

And I hate daytime TV.

Last year I wrote a book on my phone, one hundred thousand words by thumbpressing, but do I have the energy to go to my computer, turn it into an ebook and upload it to Amazon after finding out how to do that? Nope.

I have no money so I can’t online shop and get excited about a delivery. The only mail I receive are bills.

So what to do? Damn good question.

Boredom – the real kind

I wrote a short post not long ago titled “What to do all day?”, a veiled reference to my complete and utter boredom.

I did my best to sugarcoat it, to look at it from other points of view and consider the fortunate aspects. But not today.

Today I am just well enough to stay in bed (as per every other bloody day) and watch TV. I hate watching TV.

I do not even have enough energy to continue the final drafting (my seventh or eighth, or maybe the twentieth, I think) of my book. The book I started writing over a year ago to help keep the boredom away. I’ve managed two hundred words or less a day, about ten minutes. The excitement is almost too much for my medication.

Damn, everything is so circular when you are chronically ill. I could easily cure my boredom by walking to the computer room, turning it on and playing a game, yet my illness has left me with not enough energy to get there. For weeks now.

So I sit here and wonder what the hell to do. I honestly have serious thoughts such as, I wonder what it would be like if I cut off my big toe? I mean, would I really miss it? It certainly would keep me occupied for a while!

I could also go to the living room where my poor suffering wife helped me to acquire a games machine. I also have a DVD player and a couple of hundred movies.

But I have no energy to leave the bedroom, and the chronic pain of my Fibromyalgia forbids it. Circular, you see?

Boredom is insidious. I used to never be bored, I always could rely on my brain to keep me occupied. Right now my brain is spinning slightly and too tired to produce any thoughts worthy of consideration. I mean, just take a look at this post!

So there you are. Completely bored out of my brain and no energy to even think my way out of it.

The specialists didn’t tell me about this part of the process, only that it would probably last for the rest of my days.

Great, at least I have something to look forward to!

No more than 500 steps for 2.5 years

For myself, and many of my fellow chronic illness sufferers, not being able to walk more than five hundred steps in a day is normal.

For me I have not done so, without serious repercussions, for the last two and a half years now.

Think about that for a moment.

How many steps is it from your bed to the bathroom and back? To the kitchen? How many trips a day does this allow you?

Yes a shower counts as well, as does walking to the living room to watch television or (if we’re extremely lucky) going outside to sit in the sun.

It is like permanently wearing a restrictive bracelet. If we walk more than 500 steps our pain from the Fibromyalgia expands exponentially. Our dizziness, skin sensitivity, headaches, body pain etc etc etc from ME/CFS increase as well.

It is like being in jail, except an inmate is allowed to walk further in a day.

So, very little exercise. In fact no exercise at all or our symptoms explode, no matter what some old fashioned idiot ‘professionals’ might think. We lump them together with those that say everything we suffer is ‘all in our mind’.

How we wish they could experience our lives for just a week, even a day!

So the next time you think it is a long walk to the shops, or around your garden, think of us who would give anything to do what you are doing, without our pain.

“Dizzy” – by Tommy Roe

A great song, I used to love it.

Used to.

That is until the inside of my head has impersonated a spinning top for the last nine weeks or so, without stopping for one microsecond.

I’ve had dizziness before with my illnesses (Fibromyalgia, ME and CFS) but it has always just come and gone, sometimes violently. This time it’s a constant whirring, with someone controlling the speed remotely. One moment it is a reasonable one or two out of ten (on the dizziness scale) then suddenly it’s up to seven or eight, with accompanying nausea and a feeling of having absolutely no control, over anything.

It’s a bit like being in a spinning, plummeting airplane. Or at least that is how it feels and how my imagination pictures it to be.

I’ve given up all drugs except my painkillers, which I have also reduced by two thirds in the hope of the dizziness stopping. I thought it was a side effect, as it started when I began a new drug. Now I just have more pain…and dizziness.

Maybe it’s not though, and that scares me more than anything. What if it is here to stay? I’ve barely maintained my sanity for nine weeks, I have no idea how I would survive nine months!! Oh please god no!

So now I hate this song, yet cannot get it out of my head. Much like my dizziness.

What is so damn difficult??

“Pain specialist Dr Marc Russo said his clinic in Newcastle treats about 2,000 new patients with chronic pain every year.

“And I’m very worried, and as many of us in the faculty of pain medicine are very worried, that ultimately it will lead to the prescription of more opioids as a sort of back-stop measure and we know that this carries significant risk and often very little benefit,” he said.”

So opioids continue to get a bad name, and cause more deaths by overdose than car accidents per year in the US because people take so many to try to stop their pain.

And yet CBD oil, which would earn the Government tax dollars instead of costing them by subsidising prescriptions and paying for opioid patients using hospital beds.

It is such a simple, straight forward decision with SO many benefits, why are we not following 40 other countries and giving chronically ill people the ability to buy it??

As usual in our society in the last ten years, in many areas, it makes no damn sense.

Reference here.

Internal dizziness driving me crazy!

For about seven weeks now my brain has felt as though it is a spinning top.

Some days it is bearable, others are filled with headaches, migraines, nausea and very little sleep as it worsens when I lie down. To be honest it is incredibly difficult to live with and I wish someone would put me in a coma until it was over. It is that bad.

It began when I was taking yet another approved drug for my condition and lasted several weeks, so I stopped taking that drug. My doctor, a wonderful woman, during my last visit said it could take a while to wear off. That was a month ago.

Since then I started another drug to help my chronic illness symptoms of complete body pain, incredibly sensitive and painful skin (every square millimetre), horrendous headaches, zero energy, the dizziness (I have had it off and on for nearly three years now) and general complete lack of quality of life.

It is, by my count, the eighth or ninth drug I have tried, perhaps more. Each time you have to build the dose slowly over time, then if it doesn’t work or you suffer a side effect (I’m good at those, there are dozens to choose from) you have to slowly reduce the dose to get off it. So months are spent doing this just to feel worse.

Why? Because they are all so incredibly dangerous. Eaxh one is highly addictive, has extensive withdrawal symptoms and can cause other significant damage if used too quickly, or just too much. All very dangerous to those who get fed up with feeling ill and so just keep increasing the dose, until they die. Opioid based drug (which the vast majority are) overdoses kill more people in the US now than car crashes.

Cannabis oil doesn’t kill anyone.

Placed on the skin and without any THC there is no high, are no side effects and no awful reactions if you increase or decrease the dose.

But it is illegal here in Australia without paperwork a mile high and a ‘luck of the draw’ response to your application. Less than a few hundred have been successful in over a year. You then need to resubmit more paperwork after six months.

You also need a letter of recommendation from a specialist, most of whom somehow choose not to believe over thirty years of pure and incredibly extensive scientific research into the positive effects of CBD (cannabis) oil.

Why? Perhaps because it is not backed by a big pharmaceutical company so it doesn’t come with trips to Hawaii for ‘education purposes’ or first class tickets to highly desired travel spots (‘conferences’) if you prescribe a set amount.

The only people who can make money out of it are governments, in 40 countries, who have legalised it and tax it. Some States in the US have completely paid off their debt and still have money left over for housing homeless people because the allow and tax this huge industry.

In Australia we do nothing. There is no financially backed lobby group that can take you to a conference at an exotic location to educate people of its benefits, just several hundred thousand sufferers (probably many more) who know it works yet are criminals if they use it.

Yet who are the criminals here? Those who choose to use a naturally occurring herb to take away their immense pain and suffering, or those who prevent the hundreds of thousands of others from doing the same because there is no patent and therefore no money to be made, no ‘promotions’ to offer.

The big pharmaceutical companies would make nothing from CBD oil and it is banned. Coincidence?

When will our governments, State and Federal, realise the amount of tax dollars they can make, the hundreds and hundreds of jobs that can be created, and most importantly the people whose suffering they can ease just by legalising a herb? It has more scientific research behind it than most of all the other drugs I have taken, combined, that cause emergency trips to hospitals and help overload our stretched system. Cannabis oil doesn’t.

It is such a clear decision, yet has not been made, that money must be the answer. Whose pockets would be lighter if people started to take something with no side effects or addictive properties instead of extensively promoted prescription drugs?

Pharmaceutical companies.

Wonderful to know what their main motivation for being is. In fact just read the Executive Summary of the recent interim report into our financial industry here in Australia and the same applies. Greed.

In the meantime I’ll just keep spinning. If you thought your last hangover was bad, try one that has lasted six weeks and counting.

I know what can help me, CBD oil, but greed and institutions with their aged heads in the sand prevent me from accessing it.

Aren’t we meant to be a humane society, where the sick are allowed to be treated with what makes them better, no matter who benefits?

Exactly like the flu virus, only completely different

The flu virus changes every year, making it difficult to treat and meaning a different vaccine is needed yearly.

With ME/CFS and Fibromyalgia the treatment changes almost for every person, so different treatments and drugs have to be tried for every person to find one that helps.

And you get better from the flu, you don’t get better from what we have.

So in fact it’s completely different from the flu virus – my bad.

So how do you find a cure for something that affects those who suffer it so differently? There are so many stories of different drugs that ‘gave me my life back’ that it is impossible to engineer one cure for us all.

Of course I hope I am completely wrong.

There is of course one supplement that actually works for over ninety percent of us – cannabis oil. No THC so no high and therefore no possibility of addiction, but because of the word ‘cannabis’ it has more opposition than an Australian Prime Minister.

There is more than thirty years of science that proves it works, has no side affects and is not addictive. Had it been developed by a large pharmaceutical company it would already be on the shelf.

Unfortunately for the pharmaceutical companies they have no money invested in cannabis (to my knowledge) so they help form the ‘against’ argument – no profit, no health.

If I won the lottery I would start a business here in Australia producing cannabis oil and I would pay taxes, making the government a fortune and a few hundred thousand people feel human again.

Why is it so difficult?

If we have trouble describing our illness how can we expect others to understand it?

For my fellow sufferers of Fibromyalgia, ME and CFS we have a unique issue.

To all outward appearances we appear perfectly healthy, and yet, as I have explained in many previous posts, we are anything but.

I will spare regular readers the long list of ailments we suffer from. The main ones for us all are pain all over our body that never quits, dizziness, brain fog and devastating exhaustion.

I think this is enough for people to realise that we cannot be judged by how we appear. And yet many do.

Unfortunately if someone asks what we suffer from we cannot say ME or CFS (at least in my experience). Firstly they have no idea what ME is (say the full name and watch their eyes glaze over) and secondly mention CFS and you risk receiving “oh you’re one of those” looks. Everyone is tired in today’s world, and if you call it exhaustion people have difficulty making the distinction.

Fatigue, exhaustion, aren’t they the same? Well no actually. Fatigue means you are very tired whereas exhaustion for us is not being able to get out of bed, sometimes for days at a time.

Still, it doesn’t quite get through to them.

Fibromyalgia though, well that’s a lovely long and confusing word so it must be important, plus didn’t one of those pop stars cancel a tour because of it? But she’s alright now though isn’t she, so when are you getting better?

Hmmmmm….give us patience.

Telling people there is no cure still doesn’t seem to sink in, because the next time you see them you are usually greeted with, “Hey how are you feeling, any better yet?”

So, what part of ‘no cure’ did you not understand?

Actually, I believe it is our fault that we receive these reactions. If people do not understand them it is the message and the messenger that are failing, in my opinion. Harsh that might be, but I believe we need a simple, easy to understand explanation of our illness or we will never be understood.

Suggestions? Mine is rather simple and to the point.

“I have Fibromyalgia. Basically it means every nerve in my body has decided to tell my brain I am in excruciating pain 24/7, without any reason, and there is no break from this as no-one knows why it happens or how to fix it.”

I know this leaves out many of our symptoms, but I find it gets the message across. If they want more information then go for it, but in the interests of raising awareness for our condition I find it is a great place to start.

If we try to tell them everything they will remember nothing, so baby steps are required.

If you have a better response please, tell me so I can use it!

By the way, as a conversation starter and to add to the credibility of our condition, please visit The Awareness Store and get yourself a Fibromyalgia bracelet or necklace or, if you’re daring enough, a t-shirt! No, I receive no commission or benefits whatsoever, I just think they are a great idea and my wife and I wear their purple bracelet.

It’s a great conversation/awareness starter, and they can be found here.

No, were are not antisocial. Just chronically ill.

One of the biggest issues I encounter with family and friends is, “why don’t we see you much anymore? You have withdrawn yourself away from us?”

My standard response is, “I’m home 98% of the time so you know where I’ll be, just let me know before you pop in so I can try to look respectable or, worst case, ask you to please visit on another day.”

We are not withdrawing, in fact we crave contact with others. It is just that we often have no energy to hold up a conversation and it can take us days to recover from one.

Nothing personal. In fact we love you dearly and appreciate enormously your support and concern for us. You have no idea what that means in our daily struggles and we simply cannot tell you how grateful we are!!

So please understand we really want to see you, our lives are utterly boring without you, just let us know before you pop in.

Unfortunately many will still see this as you withdrawing and some will take it personally, but we need to put ourselves first or our condition will never improve.

We love seeing people, it makes us feel normal and is often the highlight of our day, we just have to be careful as to which day we choose.

Forgive us our daily absences, they are not an intentional barrier. We prefer human contact (as do we all), just don’t expect a tidy house or me in anything other than my PJs.

Most days we are silently screaming for a break in our boredom, so come on in, you know where we are, we’re not going anywhere!