Somedays by Lisa Fulham

Image

Somedays it’s easier

To believe the bad stuff

The cruel words

The harsh tones

 

Somedays the darkness is all I see

Light is but a distant memory

Hope only comes

In the form of hopelessness

 

Somedays my loudest screams

Are torn from me in silence

Words loose meaning

So I crawl into myself

 

Somedays my only option is to hide

Hide all the hurt I’m feeling inside

How can I expect others to understand

When I don’t understand myself

 

Somedays my inner turmoil

Brings me to my edge

The gravity of depression

Pulls me into a downward spiral

 

But somedays

The pain feels lessened

The voice of sorrow seems quieter

The darkness isn’t such a void

And my words begin to have meaning once more

 

Somedays I see a glimmer

Of who I used to be

I hear the echo of laughter

From times gone by

My smile tries to curl

The edge of my mouth

 

Somedays I know I need to talk

Find the root

Of where the darkness came from

Find the path

That leads to the light

 

Somedays I hold out my hand

And say the word that fears me most

Help

 

Those days I feel i’m at my weakest

 

These days I feel I’m the strongest I have ever been

FIGHT HARD vs FIGHT SMART

We Fibro-Fighters face an uphill battle in our fight against FM so when I read this blog post, by Terry Springer of FibroTrack, I wanted to share. I found it to be very ‘Rocky’-like and motivating…

determinationMany sceptics and members of the “Fibro Ignorant” feel that individuals with fibromyalgia could recover if they would only try harder. They observe that many with fibro do not exercise, are significantly overweight, have terrible diets, live a fundamentally unhealthy lifestyle and appear to be doing very little on their own to get better. They conclude that laziness and apathy are the root cause.  Many believe that individuals with fibromyalgia have brought the condition on themselves and they suffer simply because they refuse to do whatever is required to get in shape and get healthy.

It’s easy to understand why the fibro ignorant come to this type of conclusion. Our society and culture view hard work as naturally leading to positive results. Individuals who put forth massive effort and leverage extreme tenacity are rewarded with big success. This is true in sports, business and many aspects of life in general. Determination and fighting to our utmost ability for things we desire are core values to our culture.

The observation by many that people they know with fibromyalgia do not appear to be fighting hard is both correct and in error. There is no denying that a percentage of individuals with fibromyalgia do not exercise, are obese, eat a horribly unhealthy diet and in fact do little on their own to try to get better. But why is this? There is no one answer. For some, it boils down to the effects of chronic pain and depression plus a lack of education and understanding about what is going on in their bodies and actions they can take to try to correct it.

images (1)For most however, the reality of fibromyalgia is that just living day-to-day with fibro is a monumental effort. Fibromyalgia leaves its victims with a very limited amount of normal “go juice” to distribute on a daily basis. Exceeding the limited amount of energy and focus that patients have available often results in a giant fibro flare-up. Pushing harder and trying to use tenacity frequently backfires bringing on the opposite result from what is desired!

Yet, not fighting hard to do all of the things that make up an effective self-management effort means that the odds of a patient recovering are minimal. Getting better is up to you.

This is a terrible Catch-22! Fighting too hard will make you worse but not fighting hard enough will prevent progress. How do you deal with the reality of not having enough energy and focus to accomplish daily everything you need to be doing? Is it impossible to fight hard enough without pushing too far?

The title of this blog posting is a trick. Fighting hard and fighting smart are not an either/or proposition! With fibromyalgia, the two tactics should be simultaneous and symbiotic. imagesEffectively fighting smart will increase your ability to gain results from your limited capacity to fight hard by ensuring that your hard fighting is targeted in the best direction. You must get everything possible out of your limited ability to fight hard!

Well-structured systems and defined processes form the core operating principles for all successful organisations. They are required to achieve the best results when dealing with any complex ongoing effort. Corporations, government and high-achieving individuals all rely on quality systems to help them best direct their focus and efforts. If you are fighting fibro and you want to recover – you must do the same!

fibrotrack-logoI hope you will check out the ultimate tool and system for fighting smart – FibroTrack.

But regardless, if you wish to make the most of the fighting hard you can do, you need systems and well-defined processes to guide you in fighting smart!

See what I mean? Don’t you just want to start fighting (again/more)?

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.

Where, oh Where…?

So, I’ve spent most of the day looking at current research and trying to find something to write about; BUT it’s all so BLAH!

203. acupunctureYes, acupuncture has been found to help those suffering from FM – where’s the new information in that?

Yes, marijuana has been shown to help those suffering from FM – where’s the new information in that?

Yes, dysmenorrhea is especially common in FM – where’s the new information in that?

Obesity, tai-chi, hydrotherapy,  shiatsu, reflexology, yoga – it’s all the same…there is nothing new!

I’ve kept reading, checking Facebook, watching tweets and I can’t find anything! And, obviously, I have done nothing else to tell you about. So, I’m setting you a mission: can you find (somewhere, anywhere) something new about FM?

images

Related Articles:

ENOUGH! (Just for Now…)

This week, I have been filling out forms for the insurance company, calling doctors to get full medical records, and making too many phone-calls. I redecorated my study so my nephew, Z, would have more space – he didn’t like it so I had to move everything back…and I dropped a book-case through the wall! picture wallI had a gorgeous picture wall but, for some reason, after 6 months, all the frames have been falling off. (Command want proof of purchase to replace all the broken frames – who keeps their receipts THAT long, especially if they’re not a tax deduction!) The two giant canvasses above my bed also fell down – at least, they couldn’t break. My Mommy has been bed-ridden for 5 weeks with a bulging disc sitting on a nerve. I forgot what day it was yesterday and missed my hydrotherapy class. And I can’t get rid of this blasted headache!

So, for now, I don’t give a rat’s arse (an Australian colloquialism) about trying new treatments, seeing new doctors, hearing anybody’s suggestions for what I should (or should not) do or reading new research…sometimes, enough is enough! lay-like-broccoliI just want to veg out…Be still like vegetables. Lay like broccoli. (Ok, I watched Pretty Woman tonight).

Just not do anything!

veg-out

 

A Busy Day

Phew! That was one very busy day!

Not only did we have the very early, very loud, children’s birthday party; but, a group of very lovely women from the Facebook page Fibromyalgia MELBOURNE, Australia met up for lunch at the Burvale Hotel – a little out of my way but well worth it; and I really hope we can do it on a more regular basis.

FM Melbourne

Once again, I will repeat that personal contact (as opposed to cyber contact) is really important for all of us – no matter how okay we think we are doing by ourselves.

The Pain of Family vs the Pain of Fibromyalgia

Bet you thought the saga with my father was over, huh? Wrong!

So, first, we had the letter I sent, followed by the thoughtful text he sent…and then silence on the western front.

When we had the family event for my brother’s birthday, I asked my brother if he wanted to invite his father (even Mommy thought it was a good idea). My father decided he would do his own thing with Mitch.

A couple of days before my operation, my father called to wish me luck. It was a very abrupt phone call with no other discussion permitted.

I decided to send some of the photos of my brother and his son (at the birthday party) to my father, as my brother would never do it and I thought he would like them. I didn’t attach a message – they just were.

So, a couple of days ago, I receive an email from my father:

When I was in rehab, you had a letter delivered, which everyone in the room read, attacking both Yvonne and myself over things you know nothing about. We are very upset about this, and therefore if you want any sort of relationship with me or Yvonne, you will write and have delivered both a letter of apology to Yvonne and myself. Dad.

I waited a day (as suggested by my Mommy) so I wouldn’t overreact then replied:

Yes, Dad, I sent a letter marked PERSONAL to you; and you chose to share it.

The letter was not meant as an attack on either you or Yvonne – it was a missive to you (and you only) describing my feelings; the letter was an explanation of how I feel. And I will not apologise for my feelings.

After much thought, I believed that this was the only way for me to communicate to you my point of view. I spent a lot of time and emotion writing that letter so that you could understand me. It upset me to write the letter but I thought it was necessary as it was becoming impossible to approach you alone, and in a non-emotional state (every phone call with you ended with me in tears).

I had hoped that the letter would encourage you to acknowledge my feelings; and allow us to talk about them and your reciprocal feelings. But I guess not.

P.S. I sent the photos because I thought you might want some photos of your son and grandson. Don’t worry – I won’t do it again.

Today, I received a reply. My first thought when I saw the email was ‘leave me alone!’

The whole reason I wrote the letter was so I would no longer be stressed by the situation and here it is, encroaching on every day. And, in my recuperating state, I just don’t give a damn. I hurt so just go away!

Anyway, his email:

Firstly, Yvonne has been my partner for over 20 years, and we do not have any secrets.

Secondly, I do know the difference between writing about feelings and unsubstantiated rhetoric. Writing that Yvonne is alienating me from my friends and that I am only staying with her because I have nowhere else to go is uninformed bull and just plain nasty. This is what I want the written apologies for, after which we are willing to sit down and discuss your feelings and anything else you might want. Dad.

I just want this to end – I had already come to terms with the fact that I would be upset to not have a relationship with my father; but that was more because he is my father, not because of the wonderful, supportive person he is in my life. I have had the time to think about it all logically and unemotionally and decided that I really wasn’t going to be missing anything. But it seemed that this was never going to be over and I would have to deal with the stress of it forever.

So, my reply,after thinking about it for a day, just in case I am being overemotional or overreacting or just plain over it:

As I said in my original letter, concerning the two statements for which you request an apology, ‘…that’s just my psycho-babble – I could have it very wrong…’ and, obviously, you think I have; so, yes, I apologise (you can have that in a written letter).

Nonetheless, I wanted to talk, about the topics in the letter, with you alone (hence the personal letter). It has nothing to do with having secrets from Yvonne. It has to do with how you and I relate to each other.

You have made it clear that you are not interested in ever ‘choosing me…’ so, I guess, following receipt of my written apologies, we will endeavour to preserve some sort of relationship.

And I have two pretty, little pink envelopes with two pretty, little pink cards inside that say:

I am sorry that some of the comments in my letter offended you. It was not my intention.

As I said in my original letter, the comments, which you have described as unsubstantiated rhetoric, were ‘just my psycho-babble’ and that ‘I could have it very wrong.’ Obviously, I did; and I apologise for that.

Can it all be over now? Please?

P.S. For those who were worried, my shoes are all lined up like soldiers along the wall now thanks to my Mommy and Henry (her other half).

To Thais

 

My friend, Thais, in her own words, is OCD – total neat freak!

Today, after doing some shopping and while I was splayed across the couch trying to recover, we had a discussion. We were talking about how there was too much to do – how bags of different types of shopping are accumulating on the floor of my kitchen or bedroom, after being dumped there at the end of a trip out.

She said to me that, originally, she couldn’t understand how I could handle it. But now, after seeing how I can go out with her all excited and eager, then suddenly watching the life sucked out of me as our day goes on – she gets it (or, in her words, gets it as much as anyone without FM can!)

Thais is going away at the end of the month, for at least 6 months. What ever shall I do without a (non-cyberspace) friend to understand me?

I will miss you so much, Thais. Thank you for all that you do with me (and for me); and for bothering to maintain our friendship – it means more than I can find words for…

 

Hope(less) Springs Eternal

Feeling quite hopeless right now.

Crisis occurs when our theories about ourselves in relation to the outside world go fundamentally wrong.

Carol Osborne, The Art of Resilience: 100 Paths to Wisdom and Strength in an Uncertain World

I’ve just spent about 6 hours sending out personalised emails, looking for some advertisers for LIVING WELL with FIBROMYALGIA; after spending a couple of hours doing the same yesterday. I haven’t heard anything back yet – you all know me now: I need everything to happen NOW!

So I’ve decided to stop, not least because my head and shoulders REALLY hurt, but, when I stop I feel hopeless and helpless. I don’t like just stopping. It means I am just waiting. I don’t like waiting, especially when I don’t know what I’m waiting for. I don’t have anything planned for tomorrow…or the next day…or the day after that. In fact, I don’t have anything planned until next Tuesday.

It’s not like I don’t have things I need to do (empty dishwasher, laundry, put the shopping away, clean my bathroom), it’s just that I can’t get motivated to do those things. and tomorrow is supposed to be a beautiful day – and I want to do something, but not really. I am lacking in motivation. What do you do to maintain motivation?

I even submitted ‘maintaining motivation,’ ‘disability,’ and ‘illness.’ Mostly, this search led to sites dealing with depression; although I did find some helpful tips for increasing motivation:

  1. Test out the assumption that you can’t do something. Break it into small parts and try a piece of it. Self-efficacy, the belief that you can have impact on or change your world, leads to greater accomplishment than a negative “can’t” attitude, which stops you before you have begun. Many “can’ts” are actually “won’t try’s.”
  2. Focus on what can be gained from effort rather than on total victory. Not everyone succeeds one hundred percent of the time, and valuable lessons can be learned even if the objective is not totally achieved. Human nature seems to dictate that as a project’s chances for success appear to decrease, effort also decreases. Often this decision is based on extreme thinking: if you are not going to be totally successful, why try? Looking at the world as all black or all white will prevent a lot of positive growth by promoting fear of failure and restricting those activities you will be willing to engage in. History is replete with famous “failures.” Columbus failed to discover a new route to India; Edison failed hundreds of times before creating a filament for the light bulb. It is almost impossible to think of anyone who has succeeded quickly or totally at what he or she set out to do. Life is not a winner-take-all contest. Motivation can be increased by focusing on growth and effort instead of winners and losers.
  3. Shorten feedback loops. When you feel unmotivated, tackle a few projects that can bring pleasure and satisfaction quickly, such as writing a letter, exercising, or helping someone else with a small project. This establishes a connection between action and positive results, thereby increasing motivation.
  4. Remember that variety is the spice of life and a boon to motivation. Sometimes shuttling between projects that require different skills provides a needed break. For example, employees whose jobs allow greater diversity report higher job satisfaction and are more productive than are workers whose jobs are more monotonous. Organize your time to provide diversity when possible.
  5. Keep a “have done” list. It is common for us to say, “I haven’t done anything all day.” This type of extreme thinking can be corrected by making a brief list of things to do and using it to organize time and reinforce what is accomplished. At the end of the day it becomes a “have done” list and helps provide solid, positive feedback. Collecting this evidence over a period of a week is even more convincing. If you tend to get carried away with lists, start with only five things to do and don’t add anything else until you have finished one of them. The number of items remains constant at five, thus offering variety and a chance for you to set priorities without becoming overwhelmed.
  6. Avoid the workaholic syndrome. Some people who worry about flagging motivation are actually workaholics. Sooner or later, their bodies cry out for a rest, and pushing even harder only makes matters worse. All of us need vacations from working from time to time. The workaholic is annoyed by these interruptions or becomes anxious that he will never have the energy to return to the work. What could be a recreational respite turns into a downward spiral of negative and self-condemning thoughts. Try taking a few days out for a real rest. Resolve to use one hundred percent of the time enjoying the feelings of relaxation. Like a good night’s rest, a vacation can restore your ability to concentrate and increase your energy.
  7. Use positive mental imagery to increase motivation. This is done by creating a mental picture of what you would feel like if you accomplished your goal. The power of imagery seems to increase as the mental image is elaborated upon and anticipated.  
  8. Make a balance sheet for the task you’re procrastinating. Listing the advantages and disadvantages of inaction can help clarify the reasons you may be avoiding something and offer a more positive perspective. Putting the ideas on paper often makes it more feasible to contend with them rationally, too.

Helping anyone?

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?