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.

P.S. If you enjoyed this post at all please follow me, it actually helps knowing I have an audience!

How Do We Get Through This??

To my fellow invisible sufferers of ME/CFS and Fibromyalgia, there is always pain but there is also always hope.

I wish I could say everything was fine but you know that is a lie. We all have our own stories, some far sadder than others, but all with that common bond – we constantly suffer excruciating pain and exhaustion but we look healthy.

Now I am not saying I would rather look ill, I’m not that good looking to start with! Perhaps something simple that others could see and recognise, and no I do not want that sign to be my wheelchair.

A sign, yes that might work! Maybe something small and tasteful, a neon sign above my head with a pain meter flashing brightly. I think red would be a nice colour. Oh, and in bold…and maybe underlined as well.

Seriously though, how do we get through this incredibly debilitating illness that can last anything from five to fifty years, when everyone we meet tells us we look fine and wonders what we are on about. Sick? Hey you didn’t see me last week, I had the flu so badly!

Every one of us would gladly swap our condition for the flu any day! Even if we were told that the flu would last a year I am certain we would all sign up!

There is a serious disconnect between how we look and how we feel, and it is wider than the Grand Canyon. It is also impossible to explain to people in a dozen words or less, which is the average attention span these days after they have said; “Hi. How are you?”.

It would make our lives so much easier if we could tell people what we are going through in a nice, short, simple sentence. A sentence that would achieve complete and immediate understanding.

“I have ME/CFS and Fibromyalgia. Never heard of it? Well I feel exhausted all the time..” That is about as far we get sometimes before they jump in and say something like; “Tired? Mate I’m tired all the time! I work fifty hours a week, have to look after the kids and I don’t get to sleep in on weekends because I have to take my oldest to their footy game.” And the attention is now on them, not you, and you feel like you now have to justify how you feel, convince him your illness is real and terrible and awful and some days you feel like you are dying and your partner left you because they couldn’t cope and didn’t believe you were actually ill because you look so well….

Take a breath. Breeeeeathe.

Now ask yourself a simple question. Apart from doctors and Centrelink, do you actually have to justify how you feel to anyone? Is it critical that people know exactly what you are going through? It would certainly make your life more bearable but since it is so crappy now, will it make that much difference if he/she knew the intimate details of your chronic illness?

Obviously with close family and friends the answer is a resounding yes, but they will (should!) give you time to explain exactly what you are going through. It also lets you know who really cares, because the ones that care actually listen, ask questions and try to understand. The ones that don’t you are better off without, as excruciatingly painful it might be at the time.

Time might not heal all wounds, but it does dull the pain. So hang in there, it does get better!

So what do we tell people, to make it easier for them to understand? Yes they should allow you the courtesy of listening and trying to comprehend it all, but we also have a duty to make it as easy for them to understand as we can.

To put it flippantly, and to improve the mood of this article by giving us all hope for a more sympathetic tomorrow – we need a catchphrase.

“I have………?” What can we say that covers a dozen symptoms (or more) for an illness that many people (including the medical profession and, of course, good old Centrelink) do not believe exists?

Correction. We need a label, not a catchphrase. People love labels. It makes everything easy, fast and quickly understood. They have busy lives you know (as they will tell you at the first opportunity, alluding to what you said about spending 90% of your life in bed). The most important aspect is that it needs to be quickly understood so we do not spend unnecessary energy trying to explain everything.

Now if you think that I am about to tell you what that wonderful, easy, stress-reducing label is, I apologise because I have no idea.

But maybe, together, we can achieve this? Think of all the times you have tried to explain to someone how you are feeling, then think about how wonderfully easy it would be to tell them in eight words. They sympathise or grunt and you move on. No more asking yourself; “Where do I start? Do I say I’m bedbound for almost my entire life, will they believe me or laugh and say they wished they could just lie in bed all day? Do I have the energy to try to explain everything to this person? Is it worth it because it will be exhausting and I need every drop of energy just to exist? Do I just say that I’m fine and move on? Do I owe it to fellow sufferers to make the effort and explain it all so one more person understands? Do I push on and try to spread the message about this largely unknown illness? If they don’t believe me will it crush me and take a week or two to recover?

In my case I ask myself if I have the energy to answer with – “Actually I had to stop working in April last year due to my chronic illness. We lost our dream home which was devastating and incredibly stressful, but we were lucky to find a beautiful home we downsized into a bit further out from the city. I can’t plan my days because I don’t know when my next crash will be, so you’ve caught me at a good time. I’m actually out of the house! I’m bedbound for about 90% of my life so these outings are very special to me. I take incredibly strong painkillers that I have to be careful to not get addicted to, but if I don’t take them I’m quickly in as much pain as a cancer patient in the last three months of their lives. It is documented, studies have been done. I regularly have a blood test to keep an eye on my liver and other stuff, and see my GP every month. Last week I had a migraine for three days and I really don’t know how I got through it, hardly slept. Just two mornings ago I woke up in horrific pain all over my body, I have no idea why but I changed my medications a bit and the pain has reduced, touch wood. Now I go to bed at night really scared that I’ll wake up in that same pain, the worst pain I have ever experienced. The dizziness is crazy. I walk around at home – when I’m out of bed that is, I can only do 500 steps per day or I have several bad days afterwards – and even with my walking stick I keep crashing into things. My skin is incredibly sensitive and sometimes when I put clothes on or just turn over in bed it feels like someone is peeling my skin off with a very sharp knife. I really cannot do more than one outing a week, or two very short ones, as I crash badly. It is nice to get out and feel human, but I have to be careful because my senses are so fragile that if there is noise and people talking loudly around me it also triggers a crash. I’m trying to keep positive, luckily my partner is very supportive, you wouldn’t believe what some incredibly thoughtless and horrible things some other partners do. Some leave their spouse because they don’t believe we’re ill or just can’t cope with having to do everything around the house. I feel so sorry for them because the illness itself is horrible enough without your personal life imploding as well. Anyway as I said I’m trying to stay positive, so I’m writing a blog to support other people with the same chronic illness, by letting them know they are not alone. I write some other stuff as well, mostly at night because I often can’t get to sleep even though I am completely exhausted. Have you seen a marathon runner at the finish line? I feel like that if I just walk down my street. I’m also reading a bit, in between the dizziness, to try to keep my brain going. I never thought I’d say this but I really miss working, you’re very lucky, so next time you have a bad day think of me because I’d trade with you in a microsecond! They haven’t found a cause or cure yet. I’m still waiting for Centrelink to approve my application for the Disability Support Pension, it has been in their system for over a year and it’s an incredibly stressful process, exactly what I don’t need. It’s the Federal Government trying to save money and most people with my illness get refused and have to appeal. For some stupid reason the assessors at Centrelink believe they know better than four doctors! Absolute disgrace especially in our country, no compassion for people like me at all. And how are you?”

Yes, I think we need a label.

Any ideas??

Why can’t we (ME/CFS sufferers) sleep???

The chronic illnesses we suffer from are usually the result of stress, anxiety or some nasty virus we had earlier in our lives. This results in us not being functional human beings during the day due to complete exhaustion and pain.

So you would think that our bodies would be eternally grateful to us each time we lie down at night, turn out the light and finally close our eyes for some much needed rest. The rest that our body has been craving all day.

But no.

As soon as it is time to go to bed we get all wired up (wired-tired) and are lucky to get just a few hours each night.

I personally have gone a whole night feeling so wired I was still awake when my wife went to work at 6.15am the following morning.

What the???

Our bodies demand rest, our doctors (the ones that understand us and actually believe we suffer from a real condition/s) tell us our chronic illness was probably caused by too much stress and we should sleep as much as possible. Yet at night time our bodies change their mind.

“Sleep? You don’t need sleep! Read a book for hours, just lie there with your eyes open (or shut, I don’t really care) but whatever you do DON’T FALL ASLEEP!!”

Am I exaggerating this? My own experience and, apparently, the experience of dozens of other people’s comments on social media, says the answer is a definite “No!”.

So our own bodies are filling us with false hope every day. It is exhausted it tells us, it needs a rest desperately it says, if only it was bedtime it moans.

Then we finally go to bed…and our bodies make us feel like we could run around the block and do 50 pushups afterwards! Well not really, it’s just the wired-tired feeling, I know there is no way I could run just one step let alone around the block. Anyway it’s dark out there, shouldn’t I be sleeping?

Either there is something seriously wrong with our internal wiring, or our bodies are playing cruel jokes on us.

What do you think? I would really like to know!

P.S. Please follow this blog. It is something that provides me with just a little sanity in my screwed up world. So it would be nice to know that more than ten people will read it. Your choice of course.

To fellow CFS sufferers

One of the crazy, stupid symptoms of this part of my illness (CFS – Chronic Fatigue Syndrome) has to be sleeping.

Well, not the actual sleeping per se but how it behaves.

For example, it is currently 4am. I have been awake off and on since 2am, but right now I am so awake that I want the day to start now.

It is called wired-tired, and normally occurs around 9-10pm when it is time to go to bed and sleep and all you want to do is party (although you can’t, of course, because if you tried you would last about two seconds before you collapsed with total exhaustion).

The other side of this insidious illness is that I know for a fact that when I finally go to sleep and wake up around 8.30am, it will be physically impossible for me to stop myself from falling asleep again.

What the?

An example is yesterday. Being a Saturday I was determined…no, determined…to stay awake so I could spend the day with my precious wife.

I finally got out of bed at one-thirty in the afternoon (??).

This is the stupid part I mentioned earlier.

I sat up in bed at 8.30am rubbing my eyes until they were sore, drinking iced coffee, reading, doing anything and everything to stay awake. However, and I would be interested to hear from other CFS sufferers about their experiences, it felt as though someone had each of my eyelids between their finger and thumb and were forcing my eyes shut.

The first I knew that I had gone to sleep again is when I woke up, head down, book in my lap and a very stiff neck. Angry, I redoubled my determination to STAY AWAKE!!

Crap, I’ve woken up again and my neck is very sore this time. Alright, I am getting out of bed and getting dressed (it is around 10.30am now) because I do not want to waste a Saturday!! Here we go!!

What the?? Head down again, and hell does my neck hurt! Bastard, I went to sleep again!

Alright, it is now about 11.30am and I WILL KEEP MY EYES OPEN AND STAY AWAKE!

Owwwww!! What?? No, could not have happened again, I control my body and I was staying awake damn it! Just after noon??? And I am still so tired that if I closed my eyes for more than a second I would be asleep again…wait, no you don’t, this time it is out of bed and WOAH my legs are collapsing and I am trying to walk and I am bumping into everything but at least I am awake! Take that you stupid CFS…what? It’s half past one??

And that, dear reader, is the stupidity of CFS. I could easily get up now, at just after 4.30am. Yes I would still be exhausted – I only remember waking up feeling refreshed and actually, really awake once in the past thirty years – but I could at least stay awake.

When I go back to sleep, in half an hour or an hour from now, I know that I will wake up around 8.30am and have absolutely no control over my staying awake or not. Some days, when my wife is working, I just give in and wake up when she gets home around 3.30pm or so, still feeling like I could sleep another ten hours and knowing that if I do not get up I probably will.

Which is why I am writing this at…4.42am. Because I know I will have no control over my body until much later today, sometime in the afternoon. Maybe.

I hate it, despise it, if CFS was a small creature I would rip it to pieces and then stomp on those pieces until nothing remained. I am angry, furious, and yet I have no control over it.

Many people, on reading this or hearing stories of people with CFS react with “Wow, wish I could spend all day in bed sleeping.” Well my dear fellow human being you are completely missing the point and have zero understanding!

Yes, if I had full control over my body and was actually in charge of my life, a day in bed would be glorious. The point, however, is that I feel incredibly exhausted all the time and have absolutely no control over when I sleep or for how long.

Try having a life around that! You might get to work at three in the afternoon, then fall asleep at your desk half an hour later. How long would you keep your job for?

Or you make plans to meet friends for lunch and then completely sleep through it. Yes, even with setting an alarm. Alarms for me are now just a reminder of past years when I could force myself to get up, when I was still in control. Today they are simply a temporary annoyance that my body ignores completely.

Even worse, every second of every day you know that if you closed your eyes for around three seconds you will fall asleep. (You can relax, I gave up driving months ago – another effect I hate about this part of my chronic illnesses (oh yes, there is more!) is losing my independence. Thank you CFS, I now feel like a ninety-year-old who cannot drive anymore because they cannot be trusted to remain alert at the wheel).

Three seconds until I fall asleep? Except between the hours of three and five in the morning, of course, when you just lie there wired so tight that even though you are exhausted you cannot sleep.

So you write a blog instead, that will be read by, maybe, three people.

Yeah, that is what I call a glorious life, bet you are jealous!

Bloody Migraines!!

Well, 3.35am and my latest migraine is now ‘just’ a bad headache.

I had one last night too. In fact they are so regular, I do not think I have gone a whole week without one since my illness started around June 2016.

It nearly always starts the same way. I am asleep, I wake up and need to pee (please excuse my crude language but I do have a very bad headache) and at this stage I feel alright, in that I do not have a headache. Then I get out of bed and it hits me, hard, usually on one side of my head.

This causes me to stumble and crash into the walls, furniture, basically everything, when I am trying very hard not to wake my wife (fail!). She gets up at 3.30am for work so she needs her sleep. This makes me feel guilty and my headache responds by pounding the side of my head even harder. It is the right side today (just in case the suspense of not knowing was too much for you).

So, I go and get the ‘beans’. We always have two packets of beans in the freezer, wrapped in tea towels so I can rest my head on them. Yes, two packets, as some of my migraines last for quite a while.

So now I am at the point (this point arises, at some time, with every migraine) of deciding whether to take a Maxalt, which is a tablet specifically for migraines. I place one tablet on my tongue and let it dissolve. The reason I hesitate is because they used to cost just over $6 a tablet, which quickly adds up when you have several migraines in a week.

Fortunately now I have qualified for the Disability Support Pension and with that comes cheap medication. So, now they cost me just over $2 each.

So why am I waiting, you ask?

Just take the tablet and get rid of the pain? Well, you see, if I took a tablet for every headache (as all my headaches can turn into a migraine within seconds, literally) then I’d be taking around 4-6 tablets a week, or between $468 and $624 a year.

My illness already costs me enough in Doctor and Specialist visits and all the other medication I have to take.

So I hold off on taking them until the pain is so great, and has been with me so long that I cannot stand it anymore.

I know that many people with ME/CFS and Fibromyalgia experience these same headaches, which I take some weird comfort in. So thank you, but I hope your headaches leave you for good.

And now the time has come. I cannot stand this any longer so I am going to crack open the piggy bank and take some drugs.

I really hope they work! They do most of the time, but sometimes…well, I better not think about that.

My fellow sufferers of broken sleep and agonising pain, may your headaches be mild and your painkillers cheap!

Amen.

I was King of the world… temporarily

So, I’ve been on a new drug for several weeks and yesterday (it’s just after midnight) morning I woke up feeling a bit better.

Sure, my hands and feet were still in a lot of pain (7/10) and when I tried to read I kept falling asleep and hallucinating while reading. Oh, plus my terrible itching from just below the knees down and a headache that was trying hard to become a migraine, and my skin (yes everywhere, all over my body) was still very sensitive and in some pain and all my joints are incredibly sore… but apart from that not bad at all.

Possibly the best I’d felt in a couple of years.

So what did I do? I overdid it of course, as we all do.

Hey look I can walk 30m with just a stick and don’t need my wheelchair!

So I ended up walking just over 700 steps when I’ve been under my 500 limit for ages.

Oh, and it felt good!

Until I woke up just before midnight (twenty minutes ago) with excruciating pain in my knees. And yes the itching, hand and foot pain are all still there and have been joined by neck and back pain.

And insomnia.

Why do we do this to ourselves? Because for two years I had pain all over my body, head to toe, and today (well, technically yesterday) my middle felt reasonable. Not in a ‘let’s go dancing’ reasonable but in a ‘hey, my pain is not as bad in places’ type reasonable.

And now I am paying for it. Just 200 steps over my self-imposed limit (try walking just 700 steps in a day and you will realise how pathetic my 500 steps are) and my knees are on fire.

So did I learn my lesson and will I take it easy next time I have a ‘good’ day??

Of course not!

Wired-Tired, the joys of ME/CFS

Last night my wife wanted to go to bed early as she’d had a very busy week, and since she takes care of me, wouldn’t survive without her and love her with all my heart I agreed.

One of the benefits of #CFS is that you can sleep anywhere at anytime, and yes that is part of the curse as well!

So 8.30pm and I get to sleep reasonably quickly (about an hour instead of the several hours it normally takes). Then I wake up, check my watch and I think it says 12.30am. Wow! Four hours straight for me is excellent!….yes, another side affect of this lovely illness is I don’t sleep well. I also have #Fibromyalgia and the pain keeps me awake most nights, fighting against my Chronic Fatigue and winning.

Then I check the time again, with my glasses on, and it’s only 10.30pm.

Bugger!

And now I’m wired-tired. This is the symptom where my brain is screaming at me to jump up and run around the block a few times (the wired part), and yet I know for a fact that after I jump out of bed I will collapse on the floor and have to do nothing for days, maybe weeks, to recover.

So, I’m dead tired yet my brain wants to run around the block. So I lie there and try to rest, concentrate on my breathing, and in the silence I am now more aware of my pain, dizziness, tinitis and have no energy to even turn over in bed. And yet I want to run a marathon. My body must really hate me!

Time ticks by, very slowly, not much I can do about that. So I compose this post in my mind to distract myself from those symptoms and, eventually, get back to sleep.

And wake up again every hour, to go through the same process again.

I hate nighttime!

It is now 5.40am and I can’t cope with this sleeplessness any longer, hence I’m writing this post. Then, like every other day, I will fall asleep suddenly only to wake up with my head in a very awkward position and an accompanying neck ache.

To try to stay awake I’ll play a movie on TV, and have to rewind it four or five times as I keep falling asleep. I also have no energy to get out of bed to get the breakfast my wonderful wife has made for me.

This goes on until early afternoon when I drag myself out of bed, get my breakfast and lunch (so I don’t need to get up again, it’s too hard) and take them back to bed.

At about 4pm I get up to join my wife in the living room and collapse into my reclining chair, fighting off sleep and the need to, still, run a marathon.

Then I eat dinner, maybe stay up another hour if I can, then it’s back to bed.

Repeat. Ad nauseum.

Welcome to my illness (well, part of it anyway…oh yes there is more, but I don’t want to give it all away at once!).

The final insult is my brain fog, so sometimes I’ll struggle out of bed to get my breakfast and lunch, yet when I get to the kitchen I can’t remember why I went there. Cursing I’ll go back to bed, hunched over my stick like a 90 year old man, until I remember what it was I’d got up for.

Cursing, I’ll go back to the kitchen saying to myself; “breakfast and lunch, breakfast and lunch” so I don’t forget this time.

The joys of ME/CFS and Fibromyalgia. And yet the majority of doctors still don’t believe it’s an illness. Thank goodness more research is being done in this area now.

…..I’m sorry, what was I talking about?