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.

Noise – some I can handle more than others

If my wife takes me to a cafe, for my one outing a week (two if I’m lucky), I find I can handle noise far better than I can from a large family gathering…?

I finally worked out why this is. At a family gathering I feel obligated to join in conversations, smile, be animated to a certain extent and be aware all the time of what is around me. I also need to answer the question “How are you? Any better?” which although well meaning and asked out of genuine concern, requires a response every time. Basically my condition has remained unchanged for two and a half years and I wish they would actually read this blog to keep up on how I feel. Far easier for all concerned.

At a family gathering, of all the most important people in the world to me and whom I love dearly, I feel the need to be polite, to appear well, to put on an act for them. This drains me so much it takes days to recover from.

At a cafe it’s just my wife I need to listen to and converse with. Far less concentration required and if I start to slouch she knows my energy is gone, hurries up and gets me out of there. So if it is noisy it is extraneous noise and doesn’t apply to me and can therefore be immediately ignored. With family I feel I have to be aware of what is going on around me or I will appear rude. My problem I know but it is the way I feel.

Also at a family gathering you cannot, or at least I can’t, leave mid-sentence or without saying goodbye to everyone. I would feel incredibly rude and yet for my well-being this is exactly what I should do.

All this boils down to me not being able to be as I need to with family because I love them so much and know they love me in return. They would understand, I am certain, if I suddenly got up and left or just shut down and retreated from all conversations, but I cannot bring myself to do this, so suffer in silence.

My own fault, but there it is and I cannot change it.

So when I say no to going to a large family get together yet enter a noisy coffee shop do not judge me. You know not what I am suffering, or more accurately making myself suffer.

But then who doesn’t put on a face for family and want to show them how much they mean to you, that their support is everything to you and keeps you going through the dark days?

And so I can stand noise in a coffee shop for maybe twenty to thirty minutes but not go to see a large family group as it immediately drains me for days.

Thanks illness, another fine mess you have gotten me into!

At least my guilt is happy, as it is very well fed.

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?

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!

Hallucinations…and definitely NOT the good kind!

I have been waiting (and suffering) for two years in chronic full body pain, so have tried many, many different painkillers.

Unfortunately most of them (perhaps all) have been opioid based, meaning they are incredibly addictive. And they all come with potentially wicked side effects. In fact overdosing on opioids is in the top five killers in the US, so you would think it would be a method of last resort.

Nope.

But hey, I didn’t care as long as they worked! I much prefer to be addicted on a low dose than live the rest of my life in full body pain, every waking moment. It gets to you after a while.

Then finally I was introduced to Endep. Not only did it help with the pain but it gave me a bit more energy as well. Bonus!

One of the (many) side effects of Endep is liver damage, so I had mine tested after three months. I went to my doctor to find out the results, very anxious because these drugs had made an actual difference to my life.

Good news! No signs of liver damage!

Then we discussed a few more symptoms I had been having, and my doctor started to look concerned. Never a good sign.

Apparently the minor hallucinations and forgetfulness I was experiencing was a direct result of the Endep. Some hallucinations can be fun, but I can assure you these were not.

Apparently I could keep taking these wonderful drugs but I would have dementia within ten years. I had a choice of course; simply stop taking them, which meant all my pain would return plus my bit of energy would disappear.

After crying like a baby on my way home I realised I really only had one choice. So, back to pain and no energy for me.

Each time I reduce the dose, more of the pain returns. I have now cut back to half of what I was taking and the energy it had given me has completely gone.

Apparently cannabis oil is very effective for people like me and it is impossible to become addicted.

Yes please! Sign me up!

Not that easy, as government red tape never is.

Not only do I have to find a specialist doctor who treats patients with pain and who is happy to write a letter endorsing me for a trial of CBD oil (and most doctors admit they don’t know enough about canabis oil to prescribe it, or are totally against it because they think it is addictive. It’s not, because it contains no THC which is the bit that gives you a high), then my regular doctor has to fill in forms and wait.

In the meantime I suffer in pain.

If I am fortunate enough for someone in the health beaurocracy to agree with my doctors, I am allowed to get a massive two months worth. Wow. Considering it takes medication a while to show any benefit this is cutting it fine to say the least.

Of course I can extend my trial beyond two months but that requires a whole stack of forms to be submitted and is not as likely to pass inspection.

So, yes the oil is available as per Federal government announcements, but only if I jump through twisted hoops and am lucky enough to pass.

This would mean being on the CBD oil for two months, then off it to see if my extension is approved, then go back on it and hope.

I might get used to the pain, but I will never get used to governments pretending they know what is best for me, and certainly better than my doctor whom I have been seeing for nearly two years now. It seems there are rules, regulations and red tape around anything that might be good for us. At least that is the impression we are given and unfortunately most of the facts confirm it.

How lucky I am that my Federal government is looking after me, otherwise I might actually get better.

An invisible illness never sleeps

I lie here, afraid to return to sleep and its nightmares, anxious how I will feel when the alarm for my next dose of medication wakes me at 6am.

For the past several weeks, on yet another drug I am trialling, I have at least been able to function in the guise of a human being. Albeit one without the ability to walk properly without a stick, or drive, or get out of bed by noon, or have enough energy to eat food I have to chew.

Or without #pain, my new permanent companion.

Then two days ago I woke as my ‘normal’ self. The dark excruciating #illness that lurks behind an extremely thin veneer of medication, that only provides symptomatic relief, had returned. Extreme #pain over every square millimetre of my body, my skin on fire and so sensitive I could not move. My wife was there to assist me, thank god, but crying and yelling ‘don’t touch me!’ was not how I had envisaged starting the day.

Yesterday I had a #migraine around five in the afternoon and it stayed with me until six the next morning. Probably the worst one I have sufferred from and I have many, many to choose from. I was only able to finally rid myself of this black burning beast through several ice packs (lovingly delivered by my wife of course…I owe her everything), much moaning and groaning and writhing around and taking more painkillers than I should have. What has that done to my system?

In a few hours time, if I am lucky enough to sleep that long, how will I feel when I wake? It could be anything, and that is what I fear.

It is not enough that sleep comes sparingly, now I am too afraid to sleep at all. In my slumber I might miss the signs of another downward spiral, whereas if I remain #awake I can catch it in time and medicate accordingly, so the day that follows is not a disaster like the previous two.

I should be more factual. It has actually been the last two years that I have been afraid to sleep, since my illness began.

Never a good sleeper at the best of times, always waking #exhausted for many decades and now, for two years, with my companion, pain, as well.

Will tomorrow be a ‘good’ day, so I can walk a bit further than to the living room and back? Maybe even walk to the car so my wife can take me to our local coffee place a few hundred metres away?

As I write this my wife sleeps beside me. A heavy sleep, richly deserved. She is my carer, my cook, cleaner, waiter, medication reminder, advisor and watchful observer for my monthly GP appointments. In addition she works hard three days a week, a mostly manual job that leaves her with little energy to care for me. Her efforts are Herculean and she does it all with a loving smile and sense of humour.

I have lost count of the times she has told me I must not feel guilty, but I do. This illness has taken away any downtime she used to have. She says it doesn’t matter, that love gives her energy. I believe her as our mutual love for each other has always been without limit, and she knows I would do the same for her. But I do not know for certain, as she drew the short straw.

The #guilt remains, as I am only human. A human who is afraid to go to sleep for what the morrow might hold.

If I were to fall sleep again now, how will I feel when I wake?

Uncertainty is my new enemy. The past couple of weeks on a new medication made me hopeful that I can at least cope, as long as I stay within my limits (the main being no more than five hundred steps in a day). Then two days ago I woke to incredible pain, completely destroying the tiny amount of confidence I had built upon.

No more expectations of being able to exist within my carefully choreographed existence. No expectations at all, except for pain.

Pain and I have grown used to each other, our daily contest having become a mutual ritual, until recently. Suddenly pain has the upper hand and I have almost drowned in its unforgiving embrace.

Sometimes I wake with a migraine and full body pain. Those days my complete quota of energy is expended trying to convince my wife that I will be “normal’ again soon. Neither of us believe it but we hope, and smile to reassure each other that neither of us believes me.

Will it be a ‘good’ day? A day where the medication works as it should and provides me with enough #energy to walk a little further, read a few more pages of a book or, more importantly, make my wife smile and perhaps even laugh? Will we be able to talk of ‘when they find a cure’ without all the doubt and uncertainty that usually accompanies this subject?

Will I be able to wake up when I want to? That simple process I used to accomplish, besides my exhaustion, achieved because pain had not yet made me it’s guinea pig? Now I wake and have no control over staying awake. The best description is jet lag where your eyes sting and the effort of keeping them open is beyond you. Sometimes I wake at seven and think I feel good enough to stay awake, until I wake again an hour or so later wondering what happened. Did I dream or was it real? This question is becoming more difficult to answer each day. This waking then sleeping cycle repeats until I have the energy to get out of bed and stay out, lest sleep overpower me once again.

A ‘good’ day means I can control my body before noon. I can extricate myself from the determined tentacles of sleep and actually walk from my bedroom to the living room, book in one hand and walking stick in the other.

A shower? Yes I still find them to be a source of healing, the hot water soothing my body. I stay as long as I dare, or as long as I can cope with the pain as the water hits my painfully sensitive skin. The stool I sit on helps, and also reminds me that I used to enjoy this much more standing under the hot water, exhausted but pain free.

So what will today bring? My condition is so unpredictable and the #medication for the symptoms more hit and miss than providing definite relief. I can only hope that today I can have coffee with my superhuman wife whom I love without limit.

For better or worse. Yes, she did say that on our wedding day, but probably gave it as much thought as I did.

It always happens to someone else, not me, not us, and certainly not this illness that provides the same pain and discomfort as a terminally ill cancer patient. Without the luxury of a known cause and therefore no proven prescribed treatment, I worry about what this day will bring.

My main goal each day is to make my wife smile. That is the only comfort I can rely on that will temporarily reduce my pain. Right now she is the only (temporary) cure I have. That it lasts but minutes and yet takes the effort of a decathlete is not my concern. I would do anything for her.

Making this illness easier on my wife is, and always will be, my primary goal.

Now I must sleep, as my body needs enough rest to make up for the previous 30+ years that I kept pushing myself through, not knowing why I was always so exhausted or that I was making this condition worse.

Hindsight is a loathsome creature.

So I must sleep, #anxiety over what the day will bring must be ignored. The alternative is not sleeping at all, and from bitter experience that only makes the day worse.

Please wish me well, for as I approach my bed each night I may wake having unleashed a monster. Please, let tomorrow be without such pain and effort, may I be able to get out of bed in the morning to spend more time with my beautiful, angelic wife.

May tomorrow provide me with hope, and the nightmares remain in my dreams.

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