♩♫ Lyric(a) Writing is an Interesting Process ♫♩

So Week 3 started today…my body aches just a little more each day, the fog is not lifting (which I really thought it would), and my face hurts beyond words.

doses

It doesn’t help that I had to go to the dentist for a Crown preparation so last night was spent with some frozen vegetables attached to my cheek.

And I’ve hit exhaustion – I think I have over-loaded myself with the Thunderclap campaigning (nagging), blogging every day, reminding contributors for the next issue of LIVING WELL with FIBROMYALGIA, tweeting, my shop and my FB page – it’ll all quiet down after May 12th but right now, I keep getting anxious that I’ve forgotten something to do. spireI’m also trying to get ‘them’ to light a spire (that we have in Melbourne) in PURPLE for May 12th (looking forward to a night-time picnic with Thais (did I tell you she’s back?) under the spire – anyone else coming? You can help by emailing the appropriate people)

I’m also trying for Sydney Harbour Bridge and the Opera House but I think I’ve left that one too late! (If you want to help with this one: tweet to @VividLive  Niagara Falls will B PURPLE from 10:15-10:30PM EST on May 12 for #Fibromyalgia Awareness: can we light up the Bridge & Opera House?

sydney opera house Sydney_Harbour_Bridge01

So I haven’t had a chance to FEEL anything. I just want to rest BUT I don’t feel I can as this is the lead-up to Awareness Day (I can rest afterwards, right?).

I try not to nap during the day (no matter how bad it gets) but today, I fell asleep for 4 hours.

My body just wants to stop – but, as you can see, I have no idea if it’s medication related or just life!

Feeling Debilitated? Me, too!

Yesterday, I went to the Melbourne Garden and Flower Show – it was fabulous…but a hell of a lot of walking for a VERY long time. So, of course, my body is avenging itself.

Back in April, we ran a poll to decide the best word to describe the ‘more-than-fatigue’ we feel:

Overwhelmingly, the answer was DEBILITATION!

So, it was very timely that I read this post by The New Normal:

So Very Tired

I am so tired.

I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes.  But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.

I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.

Chronic Comic 155It’s not the same now, and I wish there were a better word for this kind of fatigue.  When I say I am tired now it means that I wake up exhausted.  I can sleep for eight hours straight and wake up and feel like I haven’t slept at all.  It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended.  It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.

I am tired to my core.  And I don’t know what to do to get through this.

I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold.  The cold passed, but here I am, swollen and tired and in pain.  About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do.  She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses – crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.

I called to make a follow-up appointment on day 7 because I still felt awful.  Pain and fatigue hadn’t really improved, despite the extra prednisone.  I went to see her yesterday, and she said, yes it looks like something is going on.  She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.

Hearing all that just made me more tired.  It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage.  It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen.  We were talking about progress.

But no. Here we are again. Going the opposite direction.  And I am so very tired, so very discouraged.  And I know that I need to say to my work, to my family, to everyone – I need a break. I need to rest.  But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.

In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs.  I know all of that, but today, and all the days lately, I feel defeated by this disease.

And I’m just tired.

Myth-Understood

I read this blog post from The Invisible F and was really impressed by the way the information was presented. I just HAD to re-blog:

nessie2Six Common Fibromyalgia Myths

WHICH OF THE FOLLOWING IS TRUE?

(A) NESSIE IS REAL

(B) FIBROMYALGIA IS REAL

*

Alarming doesn’t quite sum up some of the myths  people have about fibromyalgia – a condition that affects possibly 3-6 % of the world’s population.

I assure you, it is real. The pain is real. The debilitating chronic exhaustion is real. The insomnia is real. So is every other symptom that makes it a dreaded illness to contend with.

What is also real is the ignorance that people show towards it and us – the sufferers. Here are some of the common myths that people have about FMS.

Myth 1: It’s all in your mind.

Truth: Really? When people perpetuate these misconceptions they add to the stigma of  fibromyalgia as a figment of our imagination. We are not hypochondriacs. 20 years from now when science and medicine expose more about this baffling condition,  you’ll have to bite your tongue. Don’t be part of the problem, please.

Myth 2: You can cure yourself with…wait…don’t tell me, the acai berry! No wait! what was the  latest quick fix being advertised online?

Truth: There is no such thing as a quick fix. Most sufferers will tell you they’ve tried any and  everything, desperate for a solution, as well as spending years to and from specialist doctors, doing all manner of medical tests.

Myth 3: Some good ole exercise will fix yuh up!

Truth: This is one of those times when I have to once again go ‘really?’ I’m not saying  exercise doesn’t help but the notion that some doctors and people have that regular exercise will sort our problems is wrong. Most sufferers, including myself, CANNOT  manage proper exercise.

On a very good day, if I push myself I can manage 9  minutes of graded exercise with a break in between. Then I pay for it afterwards. Sometimes we can be in bed, sore and aching for says after exercise. Every sufferer is different of course. What I will say is routine stretching and physical movement (i.e. walking the dog or rushing to work) sometimes helps in decreasing the severity of  muscle pains. It doesn’t in any way affect my debilitating exhaustion as the doctor promised.

Myth 4: It’s another excuse for laziness

Truth: Firstly, let me say shame to all those who beguile the social welfare system by abusing the invisibility of fibromyalgia and other chronic pain illnesses. Such actions   are ignominious and hurt the REAL sufferers.

Secondly, to the sceptics, we are NOT lazy. Just because we look well it doesn’t mean we are not in pain or badly exhausted or dizzy or hurting from one of our myriad of symptoms. We might look normal but our bodies are functioning with defects and abnormalities in our  central nervous system. Take it for granted that the simplest of activities tire us immensely and can encourage flare ups. For me sometimes it is having a shower,  combing my hair or walking up a flight of stairs. Many of us fix steely facades on and we brave the day. We take care of families, we force our bodies to work…because we have to.  Our friends who cannot manage this and depend on social welfare, are no less courageous than we are. So judge us only if you can walk a mile in our shoes  damn it.

Myth 5: You just need to lose weight

Truth: If I got one pence for every time a fibromyalgia sufferer has complained about being  told this, I’d be well on my way. Certainly, as with any condition, having a healthy  weight contributes to the overall well-being of the individual. But to suggest to any    sufferer that their muscle pains and slew of other symptoms like migraines, irritable  bowel syndrome, insomnia and exhaustion would be remedied solely by weight loss, well… it is ludicrous.

Myth 6: You can live a normal life like everyone else

Truth: I wouldn’t call it a normal life, whatever normal is anyway. We TRY to live but with great difficulty. TRYING to live with chronic pain and unbearable exhaustion,  migraines, cognitive impairments etc makes it incredibly hard to focus on THE NOW.  And what is living if one cannot live in the present? And enjoy the beauty of now? Have you tried to think clearly or creatively when you have a bad migraine or pain? Well multiply that and imagine having to live with it everyday. We contend with something like this and I cannot call this normal. Also, please note comparing  other’s ailments to ours doesn’t reduce our suffering in any way. It serves no purpose.

What other myths have you heard or had to debunk? Tell us so we can clear it up for them.

Gentle hugs :)

My Life has the Tendency to Fall Apart When I’m Awake

Do you think Ernest Hemingway (author of the quote in the title) had FM?

As we all know, even if we are lucky enough to sleep 10 hours a night, we are still fatigued and exhausted.

Research shows that with FM, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles may not heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with FM wake up feeling tired and fatigued.

The result: The body can’t recuperate from the day’s stresses – all of which overwhelms the system, creating a greater sensitivity to pain. Widespread pain, sleep problems, anxiety, depression, fatigue, and memory difficulties are all symptoms of FM (just in case you hadn’t noticed!).

Insomnia takes many forms — trouble falling asleep, waking up often during the night, having trouble going back to sleep, and waking up too early in the morning. Research shows that smoothing out those sleep problems – and helping people get the deep sleep their bodies need – helps fibromyalgia pain improve significantly.

But how?

Medications can help enhance sleep and relieve pain. But doctors also advocate lifestyle changes to help sleep come naturally:

  • Enjoy a soothing (warm) bath in the evening.
  • Brush your body with a loofah or long-handled brush in the bath.
  • Ease painful tender points with a self-massage device (like a tennis ball).
  • Do yoga and stretching exercises to relax.
  • Listen to calming music.
  • Meditate to tame intrusive thoughts and tension.
  • Sleep in a darkened room. Try an eye mask if necessary.
  • Keep the room as quiet as possible (or use a white-noise machine).
  • Make sure the room temperature is comfortable.
  • Avoid foods that contain caffeine, including teas, colas, and chocolate.

Therapies to Treat Insomnia When You Have Fibromyalgia

If you’re still having sleep problems, several therapies can help, including biofeedback, relaxation training, stress reduction, and cognitive therapy. A psychologist who specializes in sleep disorders can discuss these therapies with you. The therapies help people handle stress better, which helps control FM episodes, When you’re stressed out, FM tends to flare and you feel worse – that’s when you’re most likely to have insomnia, too.

Medications can also help ease FM pain at night, or directly treat insomnia. Medications to ease pain and improve sleep include certain types of antidepressants, anticonvulsants, prescription pain relievers, and sleep aids.

BUT, as we kept getting told (a lot!), no one therapy will control FM pain 100 per cent. So start to mix it up and use all the tools that are beginning to come to light.

After All…Tomorrow is Another Day.

 

So, it’s finally hit me…I’m home from Bali. Duh! you say, but I was able to stay in my little fantasy land for a whole week.

Despite coming home to: two telephone bills (home and mobile), a car registration notice, an invoice for three quarters of body corporate fees, an impending hospitalisation to withdraw from codeine, the spectre of a gallbladder operation (then disappearance of aforementioned operation), the new threat of a lesion on my liver, and an unexpectedly high bill from my handy-man; I was somehow able to hold onto my dream of returning to Bali for a year. Forget Eat, Pray, Love – it was just going to be Love, Love, Love!

WHO AM I KIDDING? For some unknown reason, today it hit me full force that I’m home and, most probably, staying here. I don’t know why it was today – nothing huge happened; but it slammed into me (kind of like those trucks that hit us during the night so we wake up in so much pain) – I’m on a disability pension. Yes, it is cheaper to live in Bali. Yes, I could rent out my unit. But I would still need to return every 3 months to continue receiving my pension, and airfares are not cheap.

This ‘little’ dose of reality brought back all the other stuff (above) that comes with being at home and, all of a sudden, I am overwhelmed. Too much, too quickly!

My reaction is a quick visit to the darkness of depression…

STOP! Wipe those idiot tears. You need some control!

I can’t control any of the bills or medical hassles so my antidote is to get some control over my surroundings – 8 shelves of books going to friends or the Op shop, 2 suitcases of clothes I don’t wear (but I might one day) going to be stored in Mommy’s garage and 4 bags of trash. There is stuff everywhere (I can’t do it all in one hit – I have Fibro, remember?) and I’m unhappy about going to bed, knowing that all this stuff will be waiting for me in the morning; but my exhaustion (and gravity) is dragging me down. So, now, not only is my head a mess but, so is the house (more so than before!)

But, as Scarlett said: I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow.

 

P.S. The clean basket of laundry is still sitting on the floor of my bedroom.

P.P.S. And, maybe, I can still work out a way to Bali…

 

What Happened?

 

I don’t know what happened today…I got up at 9.30 so I could be functioning by 11.30 when my Mommy picked me up to go the rheumatologist. He was running 40 minutes late (I hate that! Do doctors really think that their time is SO much more important than ours?) I said to Mommy, prior to going in, that I had no idea why we were actually there.

So, finally, we were granted an audience.

He said: So, what’s been going on since I last saw you? Quick medication and treatment update.

He said: Well, I see my job as ensuring that we haven’t missed anything and we’ve tested you for everything so we haven’t missed anything. You should keep doing exactly what you’re doing. I know of sufferers who have started off as badly as you but, within 5 years, have their pain and fatigue under control enough to return to work part-time. So, I don’t think I need to see you again unless something drastic happens.

Like I said earlier, no idea why I was there.

Then, Mommy had a nail appointment so I went for a walk – for about an hour…uh-oh, too long!

When I returned to the salon, I crawled into the pedicure massage chair, while I waited. The Mommy dropped me at home for a rest.

Now it’s 9pm and I’m exhausted; and I didn’t really do anything (except for the walk) but I’m ready to take my night meds and go to bed. So, what exactly happened today?

 

A Stable, Changeless State

Prior to my wonderful boobie experience yesterday, the Centrelink (Social Security department) appeals lady phoned me for more information. We discussed why ‘they’ decided that my condition was not fully stabilised.

Because Mommy and I begged my third rheumatologist (her almost in tears, me with tears dripping down my face) to refer me to rehab (which is costing me a small fortune) and to experiment a little with my medication (I was started on Lyrica back in November and nobody wanted to try anything different before giving up on me and any improvement), my condition is not considered to be fully stabilised.

Supposedly, it doesn’t help that the doctor’s report (from the first rheumatologist) states that he believes that there will be significant improvement within 3 to 12 months (despite telling Mommy and I that there was nothing else he could do for me – how was this improvement supposed to come about, then?)

Then there was the second rheumatologist who decided that all I needed to do was tidy up my ‘sleep hygiene.’

So, I’m up to my third rheumatologist who also thinks he cannot do anything for me, so Mommy and I decided we had to do it ourselves but we still need him (or my GP) for referrals and their prescription pads.

But it appears that for Centrelink to decide that my condition is fully stabilised, I need to give up. I need to remain on my current medication. I need to continue to feel my current pain. I need to lose my train of thought on a regular basis. I need to feel exhausted every day. I need to recoil from daylight. I need to shy away from bright lights at night (and during the day). I need to endure my restless nights. (You get the idea.)

But this is what it seems Centrelink requires from me. The lady told me it wasn’t quite over yet – but don’t get my hopes up.

Lucky me – after that fabulous conversation, I got to have a needle in my boobie (actually three)!

Oh! The Excitement!

I have had such an excitement-filled day – I have just spent most of the night at Mommy’s house as I lost all electricity and, much as candles are beautiful and relaxing, no heating in the middle of winter is definitely not nice.

Why did we lose electricity? After hearing a giant bang, I ran outside (in my socks) to find a hooker van (yes! a van that belongs to a group of hookers!) had hit the power pole outside my house. There were no strippers, just a little Greek man in shock. I ran inside and grabbed a blanket and coat for the man (do you think I remembered to put on shoes or a coat for myself?) and then had to direct traffic around fallen power lines while we waited for the emergency services to arrive. See? Exciting!

So what other stuff happened today? I had my first real rehab session. I spent an hour with the physio as she taught me ways to self-treat – where to massage, how hard to do it and for how long. Very useful session. She also introduced me to a new apparatus – a Backnobber. Has anyone used this thing? Talk about a fabulous way to reach those trigger points that you can’t normally reach!

Results from my blood tests came in so I was off to be stabbed with a needle full of B12 – the good thing about that is maybe I’ll lose some of the absolute exhaustion that has been stalking me recently (as opposed to the normal exhaustion!)

Now some not-so-great news, but not necessarily horrible news: After freezing to death at the really cold radiology department while having a mammogram and ultrasound, I have to go to the boobie doctor because my lumpy boobies have two new lumps as compared to the previous ultrasound. I believe I have the BEST boobie doctor in Australia as she is Kylie’s breast cancer doctor (ie: Kylie Minogue). I also figure that these two new lumps will end being the same as the last ones – yes, they look dodgy on the ultrasound but they’ll poke me with a really big needle and suck out some of each one and it’ll all turn out to be cysts again. No problem! The main problem is the big needle – it hurts! And after it’s all done, they give you a tiny icepack to put in your bra – that was alright the last time as it was the middle of summer and 40 degrees (Celsius); this time it’s the middle of winter! Chilly Boobies!

See? Definitely a non-stop day!

No Word for It!

I am exhausted (I know most of you are, too – but I’m going to tell you about it anyway), so exhausted that there is no word for it (no matter how much we discuss it).

Today, I organised myself some time so I could sleep in – it didn’t work. I woke up at about 7am and tossed and turned for a couple of hours, just trying to make myself go back to sleep. I finally gave up and moved to my couch, where I immediately felt like I could go to bed forever.

So, sitting on my couch with my tummy grumbling, I don’t even have the energy to think about, let alone making, something for breakfast. Hopefully a row of chocolate will boost my sugar levels enough to even consider food.

Just as I have heated up the last of special lactose-free milk for a hot chocolate (oops! more chocolate!), the delivery men arrive with my new washing machine, dryer and microwave. Yippee! Excitement plus! Beautiful, sparkling white appliances! So, out into the rain to open the garage so the guys could reach the laundry the easiest way possible. Out goes the old washing machine – leaking water then entire way back to their truck, so, whether I feel like it or not, it’s time to clean the laundry floor. OK, so I just sort of moved the mess into the kitchen to clean up later. No problems with dryer and microwave installation.

Taking a seat back on the couch, I hear Mommy’s car horn honk. Grab my bag, look around the house for anything I may have forgotten (does everyone else do that?) because I have always forgotten something, whether I can work out what it is or not. Now, it’s off to the supermarket – all the essentials and now I need to buy special front loader washing powder. And then, home, thank God. I feel like I’m about to die. Gravity is pulling my body to the ground, my head has stopped thinking even the most basic thoughts and my whole house is a mess!

My shopping has been dumped in the kitchen. There is a huge pile of paperwork and folders (to do with establishing a charity) to collate in the middle of my lounge-room floor. Bags of unwanted stuff litter the floor, to go to the Op shop (which closed early – I walked up there – Bummer!) There’s a couple of bags of returned stuff (no idea what) from Mommy. The point being that I have to clean all of that up before bringing out a broom and vacuum cleaner.

So, once again, I am sitting on the couch, trying to work out where to even start. I also know there’s a tonne of clean washing in my bedroom waiting to be put away (but I can’t actually see that from the couch, so I don’t need to deal with it right now).

Now I know, as tired as I am, I can only do a couple of these things. The most important is the floor and vacuuming – but, of course, I can’t get to it through all the other stuff. So, here I remain, trying to decide if it’s worth doing the other stuff, while I’m so tired, when it’s not going to make a big difference (compared to the floor, anyway).

I can’t even make that decision – and now it’s dinnertime. What am I going to eat?

Things I Have Lost (1)

Sleeping In

I remember, a long time ago, sleeping in, especially on a Sunday morning.

Sleeping in didn’t necessarily mean sleeping – it meant waking up, dozing on and off for a while, reading, napping, just lying cuddled up under the covers. Essentially, it was a wonderful way to spend the morning/afternoon/day.

That’s all gone now. No matter how tired I am – there is no sleeping in now.

I wake up exhausted. I can turn over and try to go back to sleep but everything starts to hurt. My muscles are extremely tight – I must have completed a decathlon in my sleep! Squeeze your bum really tight – feel those muscles at the bottom of your bottom? Those muscles are crammed together so forcefully, I can’t even massage out the cramps. My triceps (those muscles that were so difficult to work when you used to go the gym, that is: pre-Fibro) feel like they have been shredded. Moving my arms is a new lesson in pain – not only my triceps, I move my arms and the piercing agony begins to permeate the whole area that makes up my shoulders (I have no idea what all the bits are called).

So I drag myself upright, with only a half-hearted effort and my eyes half-shut. It doesn’t matter what the time is – it’s too early! I grab my fluffy bed socks, which are incredibly comforting; at least, until you stand up! then it’s onto my poor, broken feet to make my creaking, decrepit hips move my heavy, stiff legs. Quick (Ha! for a fibroMAGICian) visit to the bathroom, then collapse onto the couch.

A lot of effort to find a comfortable place to rest. Needless to say, no tai-chi for me today.

 

 

***Can you tell that it’s four days without Zoloft (sertraline) and only my first day on Cymbalta?