Fatigued Hope

Hope has been important to me for a while now.  Finding my own, and then holding onto it has been a break through for me in terms of my mood and my mental health.  But once I’ve got it, I admit that it’s not always that easy to hang onto.  This time it’s not my mood which is directly affected, although it’s clear to me that if I don’t get a grip on it soon, my mood could easily start to falter.

Right now I am so tired.  Fatigued seems a more appropriate word to use because tired just doesn’t quite capture the extent of it.  You know that feeling when you’ve taken sleeping medication, and your eyes are getting heavy, and you can’t concentrate any more?  I feel like I’ve been taking sleeping medication three times a day regularly, and am still trying to function as a normal, awake adult – without sleep.  It’s really not working.

I know that this is just standard for fibromyalgia, but right now my fatigue is worse than my pain (but don’t be fooled because that is still substantial).  All I want to do is sleep.  Give me a few spare minutes and you’ll find me drift toward my bed.  “Just a few minutes“, I tell myself.  But it will never be enough, and so usually I just keep going.  Actually right now I would have said I was sleeping better than usual.  But I wake up exhausted, and that is simply the way of fibro.  Apparently we don’t get any deep sleep, and so I find myself like this often.

My eye lids have been twitching (I’m sure there is a proper word but you’ll hopefully get the idea) for about five days now.  Initially I was worried, and wondered what was wrong with my eyes, but now it seems like it’s becoming normal.

I sat in therapy today struggling to comprehend what my therapist was saying.  I don’t have brain fog as I usually know it but it was just too tiring to follow one end of his sentence to the other.  And when I tried to explain it?  I didn’t get the message across.  He had been surprised that I was sitting there in pain (I’ve only had fibro for a year and been seeing him throughout that time).  Seemingly I should have had a sign around my neck.  While he heard that I was exhausted (and I appreciate that he did) it was difficult to get the full extent of my struggle across.

I’m getting the clear impression that if I look fine to others, then apparently I must be fine.  And isn’t that the difficulty of an invisible illness?  Fibro is one of many illnesses where a sign around the neck is important.  Of course I can tell people how I really am, but the repetition would drive anyone to sleep (including me).

Instead of driving people to sleep I keep it too myself largely. “I don’t want to complain”  “It doesn’t matter.”  There are lots of things I can tell myself but the reality is that largely it’s just easier to keep it to myself.  The thing is that quietly my hope is fading.  And I hate that because I just don’t want to go back there.

So what is hope in respect of an illness like fibro?  I don’t know.  This is a chronic illness.  There is no cure.  At the moment I can’t get medication to treat either the symptoms or the pain.  Oh, and I can’t afford alternative treatments right now either.  So how does hope fit into this scenario?

I have this sense that somewhere inside myself I need to come to a point of accepting the illness.  But how?  I don’t want this pain and fatigue for the rest of my life.  So how do I accept it without resigning myself?

My symptoms have got significantly worse in the year since I was diagnosed.  How do I have hope for my future with that in mind?  Right now my symptoms are dictating how I live my life.  I want to choose how I live my life, not have an illness do it for me.  How?  How do I be the one in control?

If you’ve had any flash of inspiration I’d love to hear it.  But don’t just tell me it will look better tomorrow, because I doubt that.  Tomorrow might be different levels of pain and fatigue but they will still be here.  That’s just the way it works.

“I want to explain how exhausted I am. Even in my dreams. How I wake up tired. How I’m being drowned by some kind of black wave.” 

―    Elizabeth Wurtzel

This Is Getting On My Nerves

Or an alternative title which I could turn into a song?

‘There’s Coke In My Veins’

How does that sound for a song title?  Lyrics have never really been my thing, but I had this brainwave so decided to share it with you.  Let me be clear though, that I am not talking cocaine here,  I mean coke, as in coca-cola.

Image credit: Mike Gonzalez (TheCoffee) Wikipedia.com

Right now my fibromyalgia is getting on my nerves, both literally and figuratively.  This past week I have started tingling (according to the texts) but I prefer fizzing.  I feel like someone came along in the middle of the night (Sunday night, I think) and switched my blood for coke.  It’s not just my hands and feet either.  It’s every where.  And I have this weird, what seems like a permanent state of feeling like all my hairs are standing up on end.  I am in a permanent state of shock.

I know using the word permanent is probably exaggerating, but on day five it feels like it has turned permanent, and I don’t like it.  Actually it’s very… uncomfortable and weird.

I learnt quickly that fibro is one of those conditions that is different for each person.  For me, it seems that nerve pain, fatigue and brain fog are perhaps the worst of the following list of symptoms.  Don’t be mistaken though, and think this is the complete list.  I’m sure most fibro sufferers could identify other symptoms that exist for them.

Here’s some of the symptoms of fibro:

  • Chronic muscle pain, muscle spasms or tightness
  • Moderate or severe fatigue and decreased energy
  • Insomnia or waking up feeling just as tired as when you went to sleep
  • Stiffness upon waking or after staying in one position for too long
  • Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”)
  • Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
  • Tension or migraine headaches
  • Jaw and facial tenderness
  • Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
  • Feeling anxious or depressed
  • Numbness or tingling in the face, arms, hands, legs, or feet
  • Increase in urinary urgency or frequency (irritable bladder)
  • Reduced tolerance for exercise and muscle pain after exercise
  • A feeling of swelling (without actual swelling) in the hands and feet (actually I get this in my knees)

Fibromyalgia Health Center, Web, MD

As you can probably tell, it’s not fun.  As I said, one of the biggest struggles for me is nerve pain, which doesn’t even really show up on this list.  Regularly I feel like I have electricity pulsing through my body, some times burning as it goes, now tingling as it goes.  (My brother, who is lucky I love him dearly, kindly suggested I remove my fingers from the light socket).  The weird thing about nerve pain for me is that it doesn’t physically prevent me from movement, and actually sometimes movement is best because it masks the pain.  But then fatigue means that constant movement isn’t such a good idea, let alone a possibility.  I’ve learnt that the hard way.

This week has been a write-off as a result.  The fatigue and brain fog, added to feeling like a bottle of coke, leave writing too much for me.  My brain just won’t work how I want it to, and without the aid of spell-check you’d be unable to read this.  Reading other bloggers posts has also been pretty much out of the question because I just can’t focus.  I try, and find myself either distracted, or simply going back and forth over the same line.

So if you’ve missed my posts this week, this is my excuse. And if you think I’ve missed that special post you wrote and thought was a major contender for ‘fresh pressed’?  I haven’t missed it.  I will get there.  I have an enormous pile of posts to read.  It seems to be growing by the hour, and probably serves me right for developing an addiction to the word ‘follow’.  Meanwhile, fibro wins.  Damn it!

PS.  No sympathy required.  We all have our trials and battles, This one is simply one of mine.  Just send dark chocolate.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”   

―    Haruki Murakami