Lost For Words

It’s been a while… well, it has been a while for me since I wrote.  In my last post, I commented that I thought I had turned a corner, and I firmly believe that in that I have gained a whole lot of peace that has been missing from my life for months.  It doesn’t mean all the hurts are healed by any means, but it does mean that I can start to move forward.

That said, I stopped writing because I have simply been lost for words.  I still am, but I’m trying to pull a few words together because for some people I owe them an explanation for my silence and absence.  I know that I’m not doing a good job as a friend right now, because I guess I have cut myself off and withdrawn into my own world.  There are a number of reasons for that, some of which I have a better understanding of than others.

Firstly, fibromyalgia.  One of the symptoms of my fibro is my inability to recall the words I want to use in conversation.  It applies to writing too but it simply takes longer, but for a conversation I am constantly struggling to come up with the words I want.  There is a technical name for that, but I admit I can’t for the life of me remember.  Ironic, isn’t it?  But it’s just a label.  It’s also something that is common for fibro sufferers although everyone’s symptoms are different, and so not everyone will struggle with it.

It is good when I have someone with me who knows me well.  They can help me find the words I want, but usually I just look, and sound like I’m old before my time and my memory has gone, or just completely dumb.  My memory hasn’t gone, and I’m not dumb.  It’s simply about the brain processing information.

I admit that I get frustrated with it when it is particularly bad, and so I withdraw.  Any form of communication becomes frustrating.  It’s easier just to not go there.

But there’s another reason for my withdrawal, one which I don’t fully understand but that I’ve seen myself go through before.  This past year has seen a lot of hurt for me.  I haven’t been treated as well as I would like at times, and because of it, I have struggled to trust.  The more I got hurt, the more I withdrew because I simply didn’t want to be hurt again.

It gets out of control when I don’t know who to trust, even my close friends.  When the scared part of me shuts them out, as I have done, I know that I’m in problems.  It’s just that acknowledging the problem is one thing, but changing the behaviour is another.  It’s not that I don’t trust my friends, but it’s more that I don’t trust the world as a whole, and my friends get caught in the way.  I’m sorry.

I have written in the past about Ted (see Real), and in this situation he becomes all that I trust.  He becomes my world because I know he won’t hurt me.  I said to myself a few months back that I wasn’t ever going to write about Ted again because the risk I took in my honesty about a very vulnerable part of my life was abused.  But if you don’t get anything to do with Ted, then you won’t get me.  Ted is, in part imaginary, as well as in part real.  It’s confusing, I know.  Over a long period of time he has been my way of coping with the world.  When the world gets too much, I withdraw back to him.

Withdrawn is not a place I want to stay but if you haven’t heard from me, if I haven’t replied to messages, if I haven’t commented on your posts… this is why.  I’m trying to learn to be a part of the world, a human, a trusting human again.  I have got some peace, but now I need trust.  Please bear with me in the meantime.

♦

“If ever there is tomorrow when we’re not together… there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart… I’ll always be with you.” 

― A.A. Milne

Related articles

• Real (infinitesadnessorhope.wordpress.com)
  

Something Better Than Today

Every few months I get a little bit desperate.

The pain and fatigue of fibromyalgia gets too much, and even more so, does my inability to access adequate medication to treat it.

I know I should just stay away from Google and search engines.  They are often up to no good.

But as I said, I’m a little bit desperate…

…and so anything will do (almost).

Don’t worry though, as I am still a little bit careful about what I read on the internet about fibro (and anything else).

As I say though, I’m a little bit desperate… again.

Sometimes things we already know, come off the screen at us and we feel the shock of reality all over again.  This time I was reading about the use of medicinal marijuana to treat pain, something I have had recommended to me many times, from many different places.

This is what I read (first paragraph on the page):

“Fibromyalgia, a chronic pain syndrome, is hard to treat and impossible to cure. With pain so debilitating, patients may wonder about trying medical marijuana to ease their discomfort.”(1.)

I knew everything contained in those two sentences but that “impossible to cure” hit me hard.  I had heard “there is no cure” at the time I was diagnosed, but I guess I hadn’t really heard it.  I knew it, but I hadn’t really taken it on board.  This time I did.  Ouch!  It hurt.

Why?  Because my options look slim, and while fibro is not going to kill me, it does kill my ambitions and dreams for the rest of my life, when I can’t find some form of treatment that will enable me to manage my symptoms.

I want to be working again.  I want to use the skills I’ve have, and have purposeful employment that can give me a sense of achievement.  I’d even like to earn some money doing it.  Being flat broke isn’t easy.  I don’t actually want to be reliant on welfare handouts for my existence.

It’s not my mental illness that is stopping this from happening, but the fibro, and my inability to get relief from the ongoing symptoms.  I can’t even say “well, I’ll work two days a week” because I have no idea which two days in a week I would be able to do the job.  I don’t know from one day to the next, how I will be, and whether I will be able to work.  No employer in their right mind would take me on.

There are lots of possibilities for alternate ways to treat fibro, but that’s not what this post is about, except to say that most alternatives are expensive and beyond my budget, or interfere with my current prescribed medicine regime (for my mental illness).

This post is about something that I’ve been struggling with for a while, and was part of the reason I chose last week to stop blogging for a while.  It is that lack of hope.  It is realising that this isn’t something for six months, or even a few years. This is impossible to cure (and it’s not just WebMD who say this).

Regardless of whether we’re talking physical or mental illness, who of us doesn’t want to be able to have a realistic hope for the future?  No matter what it is.  Just something that is better than where we are today?  Maybe it’s being able to get out of the house without panic, or maybe working part-time?  Maybe pursuing an interest beyond ourselves?  Maybe achieving some long held goals?

Maybe all of that is too hard right now, and that’s ok.  I spent many years not being able to see beyond each day.  But is it fair to say that we want something better than today?

That’s all I want  Something better than today.  For the past week I have had a rough run with fibro symptoms.  I’ve spent most of my time in bed, with sleep (if I could get it) the only escape from pain.  I don’t want that for the rest of my life, and that doesn’t seem unreasonable.

Unfortunately that seems to be exactly what my doctor is happy with for me for the rest of my life.  Easy for him to say.  He’s not the one living this life.  I know that means I need to get serious about finding another doctor, because I want hope.  A doctor who shared my hope for something better than today would be great.  I simply don’t want to spend the rest of my life mostly in bed, and in pain.

I know that particularly with any type of mental illness it is really hard to look ahead.  I get that.  But I also get that when I enrolled at university, I did it because I finally hoped there would be something more than hospital admissions and ER visits.  And there was more, much more.  I eventually got my degree and then got a job (albeit part-time) doing something I loved.  Even if you don’t believe that there is more, just know that someone (that’s me!) can see there is more for you.  Something better than today.

And right now I need to see more for me than ‘impossible to cure‘.  Like my mental illness (BPD), a cure might be more than I can hope for, but I can manage my fibro with the right treatments.  I can live a functional life in spite of it.   And that’s simply all I want to be able to do with fibro too.

To be fair, I know that there are some alternative theorists who say that a cure to fibro is possible, but I have yet to see how.  It seems more to me that there is so much controversy about even the existence of fibro, that a lasting cure seems unlikely right now.  There is still way to much argument of whether it is ‘real‘ or ‘all in the head‘ (which for the record, I believe it is both.  See my post It’s All In Your Head!).

PS. Please don’t give me sympathy.  I don’t need it, and it will only make me cry.  Many of us bear burdens of pain (just different types of pain). I am no different than you, just bearing a, perhaps, different load. What I need right now is practical hope that this can be different.  WIthout that, I’m struggling.  Without that, I admit that I can’t see the point.

And yes, a few days ago I did say I was taking a break.  Maybe I still am, but this just needed to be said.  Why?  I don’t know. I’m just going with it.

♦

“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.

When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.” 

― Alison Lurie, The Last Resort

Related articles

• It’s All In Your Head! (infinitesadnessorhope.wordpress.com)
• Fibromyalgia and Medical Marijuana webmd.com)

Beating Myself Over The Head With a Hammer

Why do I do this to myself?  I just do it all the time.  Make myself suffer.  Make me feel sorry for myself.  If it’s not one thing, it’s another and I really wonder why we keep doing the things that we know hurt?

Let me explain.  I can’t work at the moment largely because I can’t get medication to treat my fibromyalgia.  If I could, I would love to work.  Maybe not full-time but at least enough to have me feel like a contributing member of society.  Some income would be nice too, not to mention to make use of that degree I slaved to get to my name.

But I can’t get the medication and so I don’t have much control over my symptoms.  Today my pain is pretty bad and I couldn’t think of standing or walking for hours through a day (or half day) of work.  So I know I can’t work, but I just can’t stop myself looking for jobs.  In other words, beating myself over the  head with a hammer.

This morning there was a job vacancy in my email in-box.  I looked at thought, I’d love that job.  Better yet, I’ve got the skills, experience and personality for it.  I get excited.  Suddenly I’m picturing myself back in the workforce, and of all this thinking about where I would park my car (while at work).  Yes, I had already given myself the job.  Oh, and the starting salary looks good.

That is, until my knees and ankles ever so impolitely reminded me that just sitting today is agony.  And the job would require me to be on my feet most of the time.  My heart sinks, as my knees remind me that actually looking at job vacancies like this is just… dumb.  Not to mention depressing, disheartening, and… shall I go on?

But then I can’t quite bring myself to close the site and delete the email.  What if this is meant to be?  What if I’m just fooling myself over my incapacitation.  There are some people in my life who think I am just a drain on the taxpayer and need to get off my butt and find a job.  Their voices are in my head now, and again I’m thinking, what if they’re right?  The perfect opportunity to doubt my reality.

I fall into this trap so often, and so easily.  It’s never a pretty outcome because I end up frustrated again that I can’t work at the moment, and angry at the pain and fatigue that prevents that.  If you know fibro at all, you will know that this little exercise in knocking myself will only end in… more pain and fatigue.

Would someone please take that hammer out of my hand?  Perhaps cancelling the subscription to all the perfect jobs for me would help too.  I don’t deserve this.  Only a few days I wrote about Being Compassionate To Myself.  It was on a different issue but the basis is the same.  It’s time to be gentle with myself.  It’s time to put down the hammer.

♦

“But this revolutionary act of treating ourselves tenderly can begin to undo the aversive messages of a lifetime.” 

― Tara Brach, Radical Acceptance: Embracing Your Life With the Heart of a Buddha

Namby-Pamby Flares

‘1970’s flares’                      Image credit: Wikipedia.com

If you were thinking that I was off doing the Christmas shopping… you’d be wrong.  If you thought I was preparing Christmas menus…. that would be the biggest joke.  No, I haven’t been doing anything Christmassy, and no doubt I’ll pay for it.  This week I’ve been struck with a fibromyalgia flare.

I’ve had plenty of time for thinking, although the quality of those thoughts is probably dubious.  Brain function tends to go with a fibro flare.  One of those moments when I was lying there hoping for death as a relief from pain, I started thinking, why do we call it a flare?  My bet is that it was named by a doctor who had no personal knowledge of what it’s like to live through a ‘flare’. Hmm.

This is what I know about flares.  Flares were trousers in the 1970’s.  I had a purple pair which I was very proud of.  There was no such thing as skinny jeans, instead everything was flares.

The other flares I know are the flares you take with you on a boat.  Not that I have a boat but I know they are required in this part of the world.  They’re like a manual emergency locator beacon way before the days of Global Positioning Systems (GPS).  You boat breaks down, so you fire a flare into the sky and hope like anything that someone back on land sees your flare, and has the ability to come and rescue you.

Neither type of flare has anything remotely similar to a fibro flare.  Certainly a fibro flare lights up the sky (in some ways) for the sufferer but to call it a flare seems more to me like talking about 19th century swooning women.  Let me assure you there has been no swooning here.  I might feel like I want to die, and I might be frequently dizzy but

I do not swoon … ever.

Where my thoughts are going is that to call this a flare is way too gentle.  It just doesn’t describe the magnitude of pain, fatigue and brain deterioration.  It’s time for a better word if we’re going to get noticed by anyone.  And not be thought of as a bunch of over-achieving, over-complaining women (remember there’s plenty fo men too).

We don’t call it heart attack a heart flare, do we?  Or an asthma attack, an asthma flare?  I admit I’ve never had a heart attack, although as a side issue, right now my doctor tells me my heart is surging.  As yet he has no idea why.  Every so often it just speeds up to tachycardia levels.  That’s why I had to hit the smoking on the head once and for all.  It’s not pleasant, so with that knowledge and the experience of watching my father having a heart attack a number of years back, I know it’s not at all a nice experience and to call it a flare would simply be an under-statement and ridiculous.

I did once have an asthma attack.  It’s not the sort of thing that you usually have only one of, but I’m quite glad I only had one.  It was awful, I ended up in hospital for a few days and I wouldn’t even joke about calling it a flare.

What I want to suggest to my fibro friends, and everyone else who is still reading wondering where I’m going to with this, is that we change the name.  No more fibro flares.  Let’s call it a fibro attack.

Say the word ‘attack’ and you can feel the force of the word coming out of your mouth.  Say ‘flare’ and it’s just some namby-pamby nothing word.

We talk of wanting people to understand the viciousness of fibromyalgia, and for that matter other chronic pain illnesses, but we use a nothing word like ‘flare’ to describe it.  ‘Flare’ doesn’t describe the pain I’ve been in over the last three days.  It’s an ‘attack’ when on one side of me the bedding hurts my skin just because the two are touching, and the other side of me the mattress is too much pressure.  I can’t bear for anything to be touching me.  [More to come on this.]

I can’t sleep because the pain is too much.  My skin feels like it is on fire, I have electrical currents running the length of my spine, my ankles and wrists feel like they are bone rubbing against bone, and my muscles weigh a million tonnes and ache terribly.  I am exhausted, and my brain won’t function.  I can’t bear the light in the room even though the curtains are pulled, and any noises make me jump in my skin.  This is not a flare.  This is a vicious attack, and all I can very much hope is that tomorrow when I wake it will have eased.

So if I talk of a fibro attack from here on in, you’ll know what I mean.  I suggest you change too.  It’s just one of the ways we can get this terrible illness taken seriously.

♦

To finish, I’m wondering about this.  Where am I going wrong?

“The  aim of the wise is not to secure pleasure, but to avoid pain.”

– Aristotle

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

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The Sunshine Pill

The ‘Sunshine’ Pill – just what I need
Image(s): FreeDigitalPhotos.net 

It was Sunday that my right foot started hurting (more than usual) and over the next 24 hours the pain gradually crept up my body.  Fibromyalgia was rearing its head and there is no medication for me, so I just have to ride it out.  The electric blanket on the bed is good but I really need another one on top, and then of course there is the slight problem that eventually I begin to cook.

I wasn’t surprised that my fibro flared again.  I was upset and not quite myself all weekend.  My friend’s death on Friday had hit me more than I expected.  Sometimes it really doesn’t do us any good to know it’s going to happen, because we never know how we’re going to react.  For me, as I wrote in He Was One Of The Good Guys there were good memories of someone who had been a very good friend but overwhelming me were bad memories and hurt generated by someone who we both knew.  That seemed to take over from the grief for lost friend, and to compound it I felt guilty for being stuck in my own memories and hurts rather than taking the time to honour my friend with our good memories.

This time I couldn’t seem to pick myself up, dust myself off and carry on.  And that’s okay.  What I find not okay is that I have learnt that when I get upset and down, then my body fights back with pain and exhaustion.  To the point where I actually have forgotten my emotional pain, because I am now overwhelmed by physical pain.  I’m sorry, I may sound down on myself but that it is so not fair.

So for three days now I have been backwards and forwards from my bed, to the couch, to the bathroom (although taking a shower is completely beyond me) and occasionally to the kitchen for more coffee and food supplies to keep me going (not that I have any desire to eat).  It’s quite a life I lead.  I have hardly even ventured far enough to the computer, and that leaves me feeling like there is something very definitely missing in my life.  My ‘virtual’ friends.

Today I ran out of milk (a necessity for the coffee) and I had a birthday present for my (to be) nine year old nephew that needed to be in the post yesterday.  I called for help.  I find it hard to ask for help at the best of times.  The only person I felt comfortable asking was my Dad, but trips to the supermarket from the after-life are, as far as I know, impossible… so that’s not an option anymore.

I got my milk, and J’s birthday present was dispatched (hopefully it won’t be too late) but I got some advice too.  The person who came bearing milk knows about fibro and knows that it is fibro that is causing my pain right now.  But I got told that when the sun comes out tomorrow (gosh, doesn’t that sound like a song?) I will feel much better.  True, not a word of exaggeration.

A while ago I reblogged Robert Kalman’s LETTER TO PEOPLE WITHOUT CHRONIC PAIN  and only recently I came across a similar letter, Open Letter to Normals.  They are both pleas to people without any sort of chronic pain to not assume they know best and bestow upon us what they consider their wisdom.  Lord save us!  (BTW I have to say I actually don’t like the title of the second letter because I consider myself as ‘normal’ as the next person, but for now I’ll leave that matter and not get side-tracked.)

It’s simply miraculous how someone with no medical training, not even taking the time to ask me how I am or even what my symptoms might be, can conclude that when the sun shines my pain will be magically gone.  My doctor doesn’t even know what to do to relieve me of this, but the assumption that the weather will fix this was too much.  She left shortly after (thankfully because if I had any energy I would have got off the couch and throttled her).

I’m not sure what the weather forecast is for tomorrow but it is winter here in New Zealand and so I suspect it will be another grey, cold, damp day.  That’s okay with me because I’m not holding out hope that the weather will fix this.  But it does remind me that we need to be so careful in how we speak to other people.  Regardless of whether that person has a chronic illness, any other sort of pain, or even if they are simply ‘normal’ we (me included) need to remember to put brain into action before putting mouth into gear.

My pain won’t be gone tomorrow, regardless of the weather.  I am always in pain now.  Maybe it will be less, maybe it will be more.  No one understands fibro that well to be able to predict.  What is interesting is that after the statement was made I was quickly aware again of the emotional pain I was feeling earlier in the week.  Perhaps because I was not understood.  And I was not heard.

And with that I’m going back to bed.

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” 

 ―    Henri J.M. Nouwen,    The Road to Daybreak: A Spiritual Journey

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• LETTER TO PEOPLE WITHOUT CHRONIC PAIN (kalmanrobert.wordpress.com)
• Open Letter to Normals (fms.community.org)
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Fibro Fear?!?

Okay I admit it.  I’m a wimp.  I’m probably many other things too but right now I’m very afraid and struggling to take that ‘one day at a time’ approach.  In New Zealand we’re on a steady decline into winter.  There’s only one month to go but already it feels like that air is coming straight off Antarctica.   It is, based on where we are in the world, but I don’t want to know about it.   I’m suffering already and am completely scared of what winter is going to be like for me.

Firstly some facts:

1. It doesn’t get that cold here in NZ.  This week the daytime temperature has dropped to around 13 celsius (55F), maybe down to four  celsius (39F) overnight.    In Christchurch last year our coldest day time temperature was one celsius (33F), although night-time was rather a bit colder.  It’s not the night temperatures that worry me so much.
2. I live in what I euphemistically describe as an ‘air-conditioned’ house.  Not usually, but thanks to 2010/11 earthquakes there are quite a few gaps where the wind blows straight through.  And while I am on the very long waiting list, it will be a while (like years!) before my gaps are repaired.
3. Regular readers will know that I recently was diagnosed with Fibromyalgia (fibro or FM).
4. Heat seems the only way so far, that actually helps ease those symptoms.
5. Pre-fibro, I struggled with cold.  Actually I prefer cooler temperatures to hot but if I get too cold, I just can’t get myself warm again and that doesn’t do anything for my mental health.  I easily get depressed.

I haven’t done a fibro winter before so any advice is greatly received.  But I know only too well that the temperature drop this week has not been that big, except I have been freezing.  The heating is turned up higher, I’ve had extra layers of clothes on, sitting at my computer with a big, thick dressing gown on top of those clothes, oh and don’t forget the hot water bottle.  What is wrong with me?  And how on earth will I survive winter?

To add to that the pain this week has been worse, but I’m not experienced enough to know whether that can be put down to the cold or a bit of extra stress this week.  Whatever it is, I’m not having much fun.

Aftermath of September 4th Earthquake in Christchurch, NZ. (Photo credit: Wikipedia)

Because of the damage to our homes and the infrastructure (BTW this pic is taken just around the corner from my home) of Christchurch, NZ Red Cross has grants available to assist with winter heating for ‘disadvantaged residences who have badly damaged homes’.  I fit into this, and thought an extra $100 per month over winter would very much help in my battle to fight the cold and the pain.  Unfortunately those with medical conditions have to have a pre-existing condition at the date of the earthquakes.  Never mind that my doctor and rheumatologist are fairly sure that the extreme stress and trauma caused to me by the earthquakes caused my fibro.  It doesn’t count.  There are other grants available to those injured in the earthquakes but again, I don’t qualify.  Don’t get me wrong, I think Red Cross has been wonderful, and of course all the donations from around the world have been a great help, but why do I always seem to be one that slips through the cracks?

Image via CartoonStock

So yes, I’m scared.  I’m cold, I’m in pain and I fear the approach of winter.  PurpleLawLady from Fibromodem gave me some good advice (thank you) regarding heat pads recently and I am checking these out.  But I have visions of needing about 10 and having to be wrapped in pads with 10 different electrical wires coming out of me.  Perhaps I could become ‘Heat Pad Woman’.  If I was any sort of artist I’d give you an idea of what I see.  As it is, I won’t scare you with my art, or my imaginings.

And the power bills?  Last year my power bills were about 50 percent higher than the year before and I have to put that down to the ‘air-conditioned’ earthquake damage letting all that heat seep out.  Enough to make me cry!  So I fear what I am going to face this year when I seem to be feeling the cold more and trying to ease the pain.

Any thoughts and ideas would be extremely welcome.  And tell me, is this just what winter is like now?  Break it to me gently, but I can take it.  Whether I can by tomorrow, when I wake up to see how much pain I have, will be another thing, but do I need to know what I’m up for.

PS.  May 12th is Fibromyalgia Awareness Day, so wear purple in support of those who suffer.  And if you want to learn more check out this excellent video (by PurpleLawLady again), and was part of the Fibromyalgia Awareness Video Competition.  Congratulations to the winning entry by  Jennifer Geyer-Forbes.

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Fibro Backlash

It has been a rough week, and in my thinking of what this week involves I’ve still got Sunday to come (although I admit I am one of those that thinks the new week starts on Sunday!).  The week has been steadily going down hill for a number of reasons, some of which I have previously mentioned in earlier posts.  I’m not willing to go down any further this week, so tomorrow will just have to take me as it finds me.  There have been a number of things stressing me out this week.  That has included family issues, money constraints, helping friends who were having a hard time, dealing with a reawakened grief I feel over my father’s death last year, frustration over my limited ability to get things done… just to name a few.  In the back of my head was the thought that if I wasn’t careful this would all come back to smack me in the head.  It has.

Thursday was particularly stressful in dealing with all the things I’ve mentioned and by the end of the day I could feel my chest had tightened up and there was a slight, but nagging pain.  I learnt over the last 18 months that this is an indicator to me that I need to slow down (even further) and take it easy.  Don’t panic, I did have it checked out and an ECG was done about a year ago confirming to my doctor that my heart really is okay and that this is an indicator of stress for me now.  That said, the reason I went to the doctor was that my father died from heart disease and I was scared I was going the same way.  My doctor reckons I’m not, I’m holding out on my decision and just being careful.

Anyway back to the week.  Thursday night, as well as the chest discomfort (the word pain seems alarming!), my body was aching and I had the familiar fibro ache at the base of my skull.  It feels like someone has whacked me around the back of the head with a ‘four by two’.  Apparently most of us fibro fighters share this symptom at times.  I went to bed with some dread of how the next morning would be.

Sure enough Friday morning I felt worse than ever (in my admittedly short experience of fibromyalgia).  Everything ached, I was dizzy and my head, while sore felt stuffed with wool.  Sensibly I took what I considered an easy route including a long sleep in the afternoon.  When I woke up things were worse again.  More pain (but I’m getting used to that) but this feeling like every nerve in my body was standing on end and receiving an electrical current through them.  If I remained perfectly still it was bearable but every tiny movement was a shock through my body.  I’ve had this before but strangely only on waking.  Consequently I don’t like waking anymore.  Can you blame me?

Image via Your Reason to Laugh

Friday night and I was back in bed at 6.30pm.  What a life I have!  I had a restless sleep, waking regularly.  I finally got up at 3.00am and watched the television (a previously recorded movie).  Again, scared to go back to sleep, I went because I was exhausted.  BTW that’s one weird thing with my fibro (and I say mine because everyone’s experience of this condition is different) is that I think I will feel better if I go to sleep but waking up is just such torture that I’m really not sure why I do it.  I have yet to work that one out, but sometimes I just hold off the sleep because I can’t face the waking torture.

And today?  I have been a complete write-off.  I have spent most of the day in bed dozing.  I was meant to be at some family activities (and I’m meant to be there now) but it is quite beyond me.  Everything (and I mean everything) aches and that ‘four by two’ has been at my head again.  I’m dizzy as anything and I know I wouldn’t be safe to drive.  I am sitting here telling you about it not because I need sympathy (but I do like flowers! :-)) but because:

1. I can’t lie in my bed any longer.  I needed a break in another room;

2. You might think I’d disappeared; and

3. More importantly I just need to tell you that this illness is a shocker.  I know who can compare one illness from another, but I had no idea that when my body decided to malfunction and turn stress into physical pain, that the result would be quite like this.

Like I said earlier I am simply not prepared to get even worse tomorrow.  I have things to do and a very special man to remember.  So it’s nearly 6.30pm on a Saturday night and I’m off to bed again.

And this is for my Dad who died one year ago... and would have still made me laugh.

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Limitations

Image via boulderpainrelief.com

I’m learning that I don’t like having limitations placed on me.  If I am told I can’t do something, I want to do it even more.  I have limitations placed on me now thanks to fibromyalgia, which has left me with chronic pain, fatigue and it being seemingly impossible to get enough sleep.  I hate it.  I used to love the occasional excuse for an afternoon nap but everyday?  It loses its attraction.

In the past couple of years I have been slack in the physical exercise domain.  There are reasons for that:  I couldn’t afford a gym membership, my knees were too damaged by running and well, I just find it hard to leave the house and even walk down the road.  It’s illogical because I know that no one is really going to care what I might be doing as I walk/run down the road but it’s like home is my safe haven and it’s just hard to breach its boundaries.  I have good reasons for not feeling safe although I admit that perhaps it is time to let go.  Mostly I have learnt to overcome my issues, but leaving the house is still one I struggle with.  Another difficulty is that my history is such that I get into a regular routine of exercise and I can’t stop.  I over-do it.  I have done this so many times that sometimes it just feels easier to not go there at all.

But now I have this thing called fibromyalgia and I’m told to exercise.  So I walk one and a half kilometres, and later get told that was too much.  Too much?  Are you kidding?  Sadly not.  And here is my problem: I suddenly find I want to run marathons.  Even walking one would do.  I’ve been told I can’t and that just triggers me off to want to climb mountains.  Put limitations on me and I will achieve amazing results, although not necessarily the desired results.  Except this time I can’t do much.  I know there are forms of exercise I could try but that’s not the problem.  The problem is I hate being told I can’t do something.

Next is a pattern that I have got to know so well,  a downward slide into depression.  It happens out of frustration.  I can’t do what I think I want to do so I decide that this is my fate… and I hate that too.  I start to withdraw and it becomes harder and harder to put myself out there amongst my friends and family.  I expect that they will be thinking I should be able to do more too, so withdrawing avoids having to listen to their criticism of me.  Let me be clear though that on the whole it is not their criticisms I have to fear, but my own.  I am vicious – on myself.

Image via grant_margison.com

Somehow I feel like I’m at the top of a very tall cliff.  Those on the west coast of New Zealand, like seen the movie ‘The Piano‘ with Sam Neill and Holly Hunter, spring to mind.  The land drops away to the beach very quickly and there’s no forgiveness for mistakes.  I am at the top and stand near the edge on damp, long grass.  Damp perhaps due to the night dew or maybe the sea mist that is rising from below. One false move and I slip.  I slide feet first down.  Because it’s dark I can’t see where I’m sliding until something allows me to come to a sudden halt.  The weather has closed in and I can no longer see how far it is to the bottom of the cliff, if in fact I might have already got there.  I rest… safe in the knowledge that I’m no longer falling.  But I can’t completely rest because maybe I am just on a ledge that might give way any minute.  And then I will plunge further into darkness and despair.

That’s depression to me.  I’ve been down that cliff face many times before so I know how it feels.  My biggest task for now is to step away from the edge.  Sometimes it’s possible to actually stop the fall before I slide, sometimes it isn’t.  Let’s hope this time it is.

And to lighten my mood, as well as yours, I’ll finish with this.  Why not aim for something better, flying through the air rather than wallowing in the pond scum?

Image source unknown

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Pain… 24/7

#Fibro – Awareness Day (Photo credit: sand625)

Today my rheumotolgist confirmed for me that I have fibromyalgia (fibro).  Just another label to add to my collection.  It was over six months ago when I actually laughed at a GP (General practitioner) doctor who said she thought I had fibro.  I knew enough to know it wasn’t an illness I wanted to have and while I was in pain, I struggled to accept what she said.  Several doctors on, and I’m not laughing.  Fibro is now my reality and at least I have some explanation for the pain and tiredness that is completely unrelenting.

Fibromyalgia is:

“a chronic condition that causes pain, stiffness, and tenderness of the muscles, tendons, and joints. Fibromyalgia is also characterized by restless sleep, awakening feeling tired, chronic fatigue, anxiety, depression, and disturbances in bowel function.”.

In reality what that means for me is lots of pain in my muscles, my joints, my everything.  And I am completely exhausted regardless of how much sleep I get. At times my muscles are weak and I struggle to lift my 15 month old niece.  Our cuddles last as long as I can hold her.  This is actually one of the most heart breaking parts of it.  My feet and my legs are the most painful but somedays are better than others.  Of course that means some days are worse and just moving is a struggle.

What causes fibromyalgia?  Apparently the cause is not known but affects predominately women, with onset most common between aged 35 to 55 years.  I am 46 years old.  The onset of it is said to be : “associated with psychological distress, trauma, and infection“.  Like usual most of the information I have gained has been from people I know who have fibro, or people I know who know people with fibro.  Yes that is a little crazy but it’s hard to get sufficient information from busy doctors and when it’s affecting your life this much you just take what you can get.

So why do I have fibro?  No doctor has even begun to explain that one but here is what I know.  Last year was my most stressful year ever.  In addition to some 10,000 earthquakes (no, I’m not joking!), my parents lost their home in the worst quake, they then moved in with me (we hadn’t tried to live together since I was 18), my own home was severely damaged (and still is), my father then died suddenly and I found myself pounding his chest trying to resuscitate him without success.   You can probably guess the stress that followed.  Yes, I think “psychological distress and trauma” could cover me.  Toward the end of 2010 I was diagnosed with hyperthyrodism, caused by an auto-immune disease called Graves’ Disease.  Apparently auto-immune dieases and Glandular Fever, which I had at the age of 28, both are contributing factors for fibro.  Basically it seems I was a sitting duck.

The problem in front of me now is that because of the medications I take for my mental illness, there is apparently no drug that I can be given to treat this.  For some months I have been using anti-inflammatories and codeine.  These have done next to nothing and I thought that once I got the diagnosis today I would be able to be prescribed the appropriate drugs to treat the nerve problems that exist.  These are generally anti-depressants and my doctor has told me today that because I already take (mood stabiliser) lithium carbonate and (anti-depressant) clomipramine, that there is nothing she can give me.  I feel like the wind has been sucked out of my sails.

My mental illness drugs have been a problem for sometime, and now they cause a problem again.  I have been on this combination of drugs for nearly 10 years and in that time, with the help of a very good psychotherapist, I have stayed out of hospital, had no suicide attempts, and I have dramatically reduced the incidents of self harm.  This is a huge improvement on the previous years so I am inclined to think these drugs work for me.  But my auto-immune disease is caused by the lithium.  I will always have it, and am still awaiting long term treatment for the thyroid problems it has caused.  Last year I had the nasty (to say the least) experience of lithium toxicity because there are many drugs you can’t take with lithium, and a doctor forgot I was on it when she prescribed something that clashed.  I changed my doctor but I am left with a certain level of paranoia about medications and particularly lithium.

From what I know so far my alternatives for treating the fibro are stress reduction and exercise.  My doctor has recommended some form of cognitive behavioural physiotherapy.  Tomorrow I will find out what I can and see if I can get insurance coverage for this.  Without it, it will be out of the question.  I have yet to understand how exercise fits too as right now any exercise wipes me out for at least the rest of the day.

Obviously I am new to all this and I have much more to learn.  But for now, my head is spinning.  The thoughts have been racing almost out of control since talking to my doctor about five hours ago.  I assume the worst and jump to somewhat crazy solutions of self harm, to have me regain some control, and even to the point of thinking life is over and I may as well kill myself now.  I need to say this is normal for me.  I struggle to gain control of what I am feeling and I leap to dramatic end results.  Thankfully I am in control enough to stop myself acting on these thoughts.  I am used to this.  It doesn’t make it any easier, and I feel extremely frustrated with myself.  It just adds to the problem.  If I had no mental illness and was diagnosed with fibro today, perhaps I would be concerned at how I am to manage this chronic illness.  But having mental illness, it just makes everything so much more complex, frustrating and it is even vital that I seek the best advice and make my decisions carefully.  My life depends on it.  Fibro will not kill me although I now have it for life, but getting my brain to work appropriately and safely is a whole other ball game.

I’m off to see my pharmacist for advice in the morning.  As someone I trust he is a good place to start this journey.

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