Things I Miss Most Because of Fibromyalgia

Inspired by Toni Bernhard, J.D. in Turning Straw Into Gold…What do you miss most because of FM problems?

As Toni said: I’m trying to keep a non-complaining tone as I write.

Complaining does no good, so this is how I see my life in a realistic and factual manner.

1. Spontaneity

chronic comic 175Just like Toni, it is my guess is that this is #1 on most of your lists.  But this works both ways: sometimes you have to painstakingly plan everything so you don’t over-do it (yes, pacing!). And even then, you might be having a bad day and all that planning goes down the drain.

But, if you’re lucky, you may wake up feeling horrible (what? you say) so you ditch all the plans for the day…then, suddenly, in the afternoon, you begin to feel better so you go for a walk and get a chance to slowly window shop and appreciate your local area – something you just haven’t had time to do before.

2. Variety

As you know, I live alone. Most of my days are pretty much the same, all the time; unless some-one I know cares to visit or take me somewhere outside the 10km area zone that I am restricted to because it hurts to drive further. I tend to see the same people every day: there’s the hairdresser who calls me in for a coffee each time I pass her shop, there’s the guy who works in the bottle shop (near the supermarket) who takes a cigarette break with me each time I go shopping, there’s the florist who waves to me as I pass her store and gives me great discounts, there are all the ladies in the post office who always ask if it’s a good or bad day…and care.

Hey! Hold on…those aren’t such bad things; in fact, it makes my city living feel like a little village, and I would never have met these people if I hadn’t have gotten sick.

3. Being actively involved in the life of my family

I'd really like a girl!

I’d really like a girl!

My family now has 5 children under 7 (and another one on the way) and it hurts being in the same room with all of them sometimes.

But, if I was well/cured and working, I wouldn’t get to see them anywhere near as much. I wouldn’t be able to baby-sit or have one of them sleep over during the week, or do creative activities during school holidays.

4. Socialising

When I think about it, I didn’t really do much socialising when I was studying or working – I was too busy. I had some invitations (not too many) and yes, they have dried up now…but, really, not much has changed in that department.

5. The ability to pursue my former interests

I can no longer play squash with my father (but my father and I are no longer on speaking terms anymore, so that may have happened anyway!)

I used to love to read…and I still love to read, except that, by the time I have read 4 pages, I fall asleep.

I used to love spending a whole day shopping with my Mommy…mainly just looking – now I can only last 2 hours at most. Buy Mommy is not so well, either so outrageously long shopping trips would have been out of the question anyway.

6. Health not being the topic of conversation

64. More to meEven when (or maybe especially when) I’m not in the room, the conversation turns to my health. Am I looking good? Am I getting better? Why can’t I go back to work? Isn’t there something I can do?

I don’t want to be the centre of attention – at least, not for this ‘achievement.’

So, really, I don’t miss any of these things – what I really miss is the CHOICE: the choice to be spontaneous, the choice to re-introduce variety into my life, the choice to spend more time with my family, the choice to go to the local pub and meet new people, the choice to find new interests, the choice to stand out for something other than my weird condition; and the choice to be anybody I want.

What do you miss?

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversBottom of Form
Her new book, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrowis available for pre-order and will be released in September.

Just Pacing Back and Forth

Yes, it’s another pacing post! Basically, because we all need reminding.

Pacing is the key to living (not just surviving) with FM. That’s easier said than done when we can still remember what it is we used to be able to do, and we still try to do it all! But with some (okay, lots) of effort (and perhaps, some reminding), we can learn to pace ourselves.

Why is Pacing Important with FM?

FM really saps your energy. When your energy is low, each activity takes a longer time. As you’ve probably already learned, when you overdo it, you pay a steep price.

When I have a good day, I push myself – trying to do all the things I really want to do. When my symptoms begin to unmask themselves, I push myself harder, feeling like I have to get it all done before I start to feel really bad.

The problem with this is that it only causes setbacks: one productive day leads to three on the couch.

The ONLY way to avoid this one step forward, two (or four) steps backward is pacing. It takes a whole lot of practice, but after a while, it is supposed to be second nature.

How Do I Pace Myself?

A lot of pacing strategies can help you live better with your condition. They include:

  • Knowing your body

You need to pay attention to your body and know your limits. You should aim to be able to answer these questions:

    1. How much physical activity can I handle in a day or at a time?
    2. How much mental exertion can I handle in a day or at a time?
    3. What activities impact me most?
    4. At what time of day do I have the most energy?
    5. What symptoms are “early warning signs” that I’ve neared my limit?

Once you know these answers, you’re ready to apply pacing techniques to your life.

  • Short activity periods

If you have a big job, don’t try working at it for hours. Work for a short time, rest for a while, then work for another short period.

The amount of time you work and rest depends on your capacity for activity. Start with shorter periods than you think you can handle, and rest for at least 15 minutes in between. See how you feel after a couple of days, then adjust times until you’ve found the right balance. Yes, it takes time and experimentation – but what else is news with FM?

  • Scheduled rest

Scheduled rest periods are more than the short breaks we take between bursts of activity. Instead, it’s time built in to your day when you can take a nap, meditate or get some rest. Again, the length of time is something you have to define for yourself. Laying down for half an hour may give you a nice boost, or you may need a two-hour nap (I know I do).

Your scheduled rest period is not the time to check e-mail, watch TV, read or make your grocery list. Your mind needs rest just like your body. Try sleeping, laying quietly, meditating or possibly taking a hot bath.

  • Routines

Routines can really save you, especially if you have a lot of brain fog. This means (hopefully) that you won’t need to go shopping on the same day as pulling weeds.

The biggest barrier to routines is that our conditions are unpredictable. We have no way of knowing when we’ll have bad days or when a good day will take a turn for the worse without warning.

To deal with this unpredictability, build in flexibility – under-schedule each day based on that; so, if you finish up and still have energy, you can work ahead (without over-doing it, of course). If you have a few bad days when you can’t get anything done, catch up over the course of several days, re-prioritizing to take care of the most important things first.

  • Prioritizing

Priorities are crucial to pacing – focusing your energy on what absolutely must get done in a day. If less important things need to wait as a result, then that just is (this seems to be my new mantra).

If you find yourself being still being pulled in too many directions, make a list then break your list in to three parts: needs, wants and shoulds. ‘Needs’ are top priority, have-to-get-done-right-now-or-there-will-be-consequences things. ‘Wants’ are things that you’d really like to do IF you have the energy. ‘Shoulds’ are things you feel like you ought to do (maybe to please someone else or because other people would do them). Take care of your ‘needs’ first, then move on to the ‘wants’ (again, IF you have the energy without over-doing it).

When it gets to the ‘shoulds’ – my psychologist and I had a great discussion about the word ‘should’ – who is it that said we should do this or we should do that or we should be able to do this… I know it’s because we base our behaviours on what others are doing – but we need to try to let that go (and when you can, it is with a wonderful sense of freedom). You are you, I am me; and they are who they are (deep, huh?) Basically, you can only do what you can do.

The ‘shoulds’ can be a big source of guilt, But, forgetting that for a minute, for one day, try to leave the ‘should’ out of any sentences or thoughts you have – it’s a very interesting experiment!

  • Switching tasks

Instead of doing one thing for a long time, try to change the type of activity you’re doing frequently. If you do one physical activity for too long, it can tire out the muscles you’re using, which leads to pain and fatigue. This goes for both physical and mental activities.

By alternating physical and mental activities, you give your brain and muscles the rest they need. (And don’t forget that you may need rest periods in between each activity as well!)

You don’t have to use all these techniques — experiment and see what works for you.

Pacing is an ongoing process – it takes effort and self-discipline; but, once you see the difference it can make, you’ll find that it’s easier to pace yourself than to deal with the consequences of NOT doing it.

 

Bali 7

So this was the plan for today:

  • Wake up (then wake Mommy at 9am)
  • Walk (15 mins) to Bali Deli for brunch
  • Check out fat lady store (about 2 minute walk from Deli)
  • Get eyelash extensions while Mommy has massage (next door to fat lady store)
  • Buy lunch food at Bali Deli and return to Villa (by taxi)
  • Rest and relaxation ‘til about 4pm
  • Get taxi to bottom of Double 6 street
  • Walk/shop for an hour (at most!)
  • Dinner near Legian beach
  • Home by taxi

This seemed liked a nicely-planned, nicely-paced day, with about 1¼ hours of walking for the day – guess what? Didn’t happen!

That luggage under my eyes ain’t going anywhere!

I woke up at about 6am (I am getting about 6 hours sleep a night but it is just not enough. My body needs to sleep properly (somehow). I keep thinking that, if I get exhausted enough, I will sleep properly – not working!) I read my book, fiddled about on the computer then got in the pool. I decided not to wake Mommy – it’s her holiday, too and if she wants to sleep, I’m going to let her.

When Mommy woke up, we walked to Bali Deli (as planned) and had a wonderful brunch of scrambled eggs on toast with exceptionally crispy bacon, accompanied by an apple-orange-carrot juice.

Then we walked to the fat lady store, where there was absolutely nothing for me and Mommy tried on heaps – but it looked horrible. Very disappointing! We had high hopes for that shop.

So, so far, the plan is not too off track…

We were so disappointed that we walked to the fat lady store we had discovered the previous night (probably another 30 minute walk there and back) but, because I hadn’t woken Mommy, it was almost midday and so, so extremely hot!

We didn’t find anything worthwhile there (at least at a price that we were willing to pay) either. So a walk back to the massage place for a one hour massage at $7.00 – gotta love Bali!

Then the plan went quite well for a little while, with lunch IN the pool because we were so hot and it felt decadent. But our rest and relaxation only ended up being about 1.5 hours (including making lunch) because we had started the day so late.

Next, we got ourselves ready and caught a taxi. The taxi driver, about half way through the trip, stopped and told us he had to pick up some-one at the airport – this was as far as he could take us. What the…?

Now came a decision: did we catch another taxi to where we wanted to go? Or, was the universe telling us something and, should we walk around these shops for a while? Well, what did you think I was going to do? SHOPPING!

I found a wonderful bead shop, where, after searching the highs and lows of his store, the shop owner (Rudi) is making me gorgeous wind-on wire bracelets (ie: will fit everyone) with purple shells, purple and silver beads, and a silver butterfly on the end. But firstly, he had to make me a sample so I could make sure that it was up to my exacting standards – so we were to return after dinner.

Then, Mommy and I continued walking. About 10 minutes later, we found another bead store with the exact purple bead I wanted in the centre of the bracelet. I bought one of their bracelets, left Mommy where she was and started back to Rudi’s store to show him what I wanted.

On the way back (and how did I miss it the first time?), I saw a beautiful silver pendant, inlaid with mother of pearl, in the shape of a butterfly. Oh my! perfect for the rubber chokers I found (with a magnetic clasp so we can open and close it without hurting our fingers!) But, I was getting so tired that I knew my brain wasn’t working clearly enough, so I decided I had to return with Mommy (when we came back later) to do the bargaining and money stuff (I’ve been getting really confused with Bali money (too many zeroes) so I refuse to buy anything without Mommy being around to double-check my calculations!)

Now, where was I? Okay, I continued to Rudi’s store, dropped off the beaded bracelet with the perfect bead, turned around and walked back to Mommy. By the time I got back, all I could do was signal to her that I needed a drink FAST! Mommy, being the perfect travelling companion and caring soul, already had one open and waiting for me. I sat down on the footpath and drank the entire juice in about two gulps. My ankles and legs were killing me (have you seen Balinese footpaths?)

We decided (FM decided it for us?) that we should just stop for dinner. We couldn’t be THAT far from the beach restaurant, right? Wrong! We couldn’t even find the beach! So we stopped at another restaurant, which looked rather appealing…

After dinner, we decided we should catch a taxi and have it wait for us at each of the stores (taxis in Bali are not the same as at home – it only cost us $4 to stop at the two stores (LOVE the sample bracelet (Stay tuned for the Bali Collection on my shop) and order before returning home – umm, where I had to run inside (despite my exhaustion) to get to the bathroom as, it appears, that dinner did NOT agree with my tummy!

All in all, quite an eventful (exhausting and not-to-plan) day. Perhaps we’ll stick to the plan a little bit better tomorrow…

******LIP UPDATE******

(Im)perfection in Paradise

Right now, I feel miserable! Yes, I’m still in Bali and it’s warm and the shopping is amazing BUT…You might remember a post I wrote, in June, about Temporomandibular Joint Disorder (TMJD).

In the interests of research, and having found a brochure about an anti-aging Beauty clinic (ARC) here in Bali, I decided to try the botox to stop my teeth grinding. (I have only had it done today so I can’t tell you if it’s working yet but I will let you know.) It was $150 for 16 units of Botox – for those who have never tried the stuff, that’s a pretty good price!

Now, here’s where it gets ugly…Then I decided I should top up the botox in my forehead, to stop the squinting headaches, so that was another 16 units. And then, I decided I wanted a more sensuous top lip (I have for a long time but could never afford it) so we pumped in half a millilitre of Restylane in there. Sounds great, right?

Wrong!

I’m not allowed to smoke for 24 hours – which I thought I could handle. Wrong again! Mommy is hiding in her room as she is afraid that I will bite her head off (again!) I am so crabby that I want to hit me!

I think I may have had a reaction to the Restylane as, even after icing immediately afterwards, my top lip keeps growing (like Goldie Hawn in First Wives’ Club). Mommy won’t even take a photo because she thinks one of my family will see it!  It looks like a giant blister BUT I am not stressing out (yet!); I’ll see what happens tomorrow when I wake up.

I have a lit mosquito coil (where my ashtray used to be) next to me but I am still being sucked dry by mozzies. I look like I have chicken pox (an especially attractive sight with my giant top lip!)

Very sunburnt – yes, my own stupid fault ( and goes really well with the chicken pox and giant blister growing on my face!)

Exhausted – sleeping isn’t working here (thank you FM and rooster!) and my well thought-out pacing plans have failed EVERY day.

See? Paradise isn’t perfect.

Just Another Day Before Paradise

Had Mommy drop me up the street today so I could do some Op shopping and hit Target (silent T, of course! pronounced Tar-gé) Picked up a great purple summer-weight fedora for Bali (or for any other reason  you can think of).

But then, ‘too tired’ hit (so much for pacing!). In my defence, there was no warning whatsoever. One minute I was jabbering away to a shop assistant (sorry – still having some manic moments) and then, the next moment, it was ‘I’m melting, I’m melting’ (think Wicked Witch of the West without the previous evil behaviour).

Had to make a phone call to my semi-step-sister-in-law (my Mommy lives in sin with Henry, whose son lives in sin with her (Miki) – told you I had a complicated family!), who was picking up my semi-step-nieces after school, for a rescue ride.

How am I ever going to be able to keep up my energy (and focus) for shopping (which means bargaining) in Bali?

On another Bali note, Mommy wants me to take out travel insurance. Theoretically, I have no problem with that – it’s only something like $80 for piece of mind (he! he! now I’m selling insurance!) except then we read the PDS (product disclosure statement) and notice that FM is NOT one of the pre-existing conditions covered by travel insurance! Now, if I(1) was their lawyer, and I(2) needed to go to hospital for any reason at all, then I(1) would be arguing that anything (and WE know that almost anything) I(2) was suffering from was caused by the FM, and therefore reject the claim.

Mommy says to me (at this stage of my argument): if I need to go to hospital, it will be at least $1,000.

I say: it will be at least $1,000 plus the $80 that we wasted on travel insurance.

Mommy: I just don’t want there to be a problem if something happens like the other night.

Me: I’d be quite happy to pay $80 if I was going to be covered, but, looking at their PDSs, I won’t be. Though, I’m still waiting on a return phone call.

Mommy: So, then we fight them…

Me: For a $1,000 claim, with $10,000 worth of legal fees, in an argument that we will be unlikely to win?

Mommy: why do you have to argue with everything I say? Why is everything a battle?

Thank heaven, we had arrived at home, as I stormed out of the car!

May I Buy a Vowel?

So, now that I have the weaning medication ‘diet’ under control, I don’t want to jinx how I’m feeling. That means that this post may be a bit of a challenge to those suffering fibro fog today:

I woke up today, feeling pr_ttg__d, to a message telling me that my pain course (do I really need to learn more about pain?) has been postponed. This was g_e_t news because I had been worried that my day was going to be too busy.

After checking mail, comments, posts, etc, I went for a walk to the post office (to send off 19 orders – took an hour there!) and was feeling g_e_t, especially as I had finally started getting these orders out to you guys!

Walked back home and sent out all the despatch emails. (Sorry, guys, if you didn’t get an email today, we are still waiting for the stock.)

OMG! I am feeling am_zi_g! Maybe it might be time to clean my house? 
Stop, said the little angel on my shoulder, remember all that pacing stuff that you wrote about? Time to put that into practice, miss! So, instead of cleaning, I sat down and played some very relaxing games of Scrabble, Words with Friends and Lexulous.

At about 4pm, the AusPost package man came to the door – YIPPEE! Could this be what I (and you) might be waiting for? Sorry, once again, that’s a no. Instead, it was my new swimsuit from the fat lady store in the States – not a bad consolation prize (at least, for me!) I tried it on – pe_fe_t fit! Bring on Bali!

Next, I did a few odd jobs (you know, those things that you can’t really list – but take up time during the day?) Then, I threw together my swim bag for hydrotherapy.

WOW! B_st class ever! Everything is stretched. Everyone was in a chatty, talkative mood. And I still feel tre_en_ous!

The question is: please (please, please), can this last until (at least) after Bali?

Pace Ahead

 

After H-E-L-P, it seems there was some confusion by what I meant by ‘pacing’ so here is my explanation…

People with FM have chronic pain and cope with it in different ways:

• Some people stay active until they can do no more and then rest to recover before returning to an activity for as long as they can again. This may result in their pain getting worse or a ‘flare’ as they carry out an activity for too long. The time taken to rest tends to steadily increase.

• Some people manage very little and stop an activity at the slightest hint of pain in order to avoid over activity and ‘making things worse’. If such people begin to feel pain earlier and earlier in the activity this may stop them from participating at all.

• Some people decide that the good day/bad day cycle is too much of a roller coaster. They avoid doing much for fear of flaring-up pain. They don’t do much but at least they feel they are on top of the pain.  But they have a poor quality of life, are not able to do much, have very little fun and often suffer from depression. They also feel a lot less fit and tired when trying to do anything. Often patterns of activity develop as people try to manage their pain. Life must go on, and day-to-day activities have to be done. People may say they have little choice and that they feel trapped or controlled by the pain.

Striking a balance between activity and rest is called PACING, so you don’t burn-out or become completely inactive. You need to take an active interest and involvement in the management of your pain; breaking the vicious circle of feeling worse and doing less.

The pain will still be there in the background. The theory behind pacing is quite simple: it is important that you spot the things that are making your pain worse and find ways to make this happen less often – this is part of pacing. Learning what to do when your pain is worse will also help, so that it does not add to the problem and end up making things worse.

How to Start Pacing

  • Plan how you intend to start an activity and how long you will do it for. Just as an athlete in training you can then gradually build this up to a level which you are happy with. This pacing of your exercises helps you to introduce things in a controlled and responsible manner.
  • Set yourself positive goals which are realistic, specific and measurable you will begin to see how you are progressing.
  • Prioritise your activities so that you are achieving things in the order that you would like to. Also if you are finding things difficult then you can have finished the tasks most important to you.
  • Exercise whenever possible, this will not only keep you fit and take your mind of things, but may also help you feel better.

Pacing & Spacing activities

Pacing is a technique that you can use to gradually increase your level of activity.

Pacing is all about breaking this pattern and gradually increasing what you can do. It should be possible to pace any activity, although in everyday life, we are not used to doing things gradually – we like to get things done quickly. But pacing really does work!

Start by choosing one or more activities that you want to be able to do, or be able to do for longer, e.g. walking, sitting, standing, etc. If it’s the first time you’ve tried pacing, don’t be too ambitious. Choose an activity that you find difficult, but not impossible. Set a baseline amount of time that you can easily and comfortably achieve. Then practice that activity regularly, every day if possible, on good days and bad. Then gradually build up the amount of time you spend doing this activity, but never do more than you planned. Write down your times on each occasion and this will help you to see how much you’re improving.

Pacing really does work; you can stay motivated by continually achieving a series of small goals!

Spacing involves breaking down an activity into manageable chunks and taking some time out between each chunk to rest and relax. By dividing up tasks in this way you can keep an eye on how you feel and how you are getting on with the task. Your rest periods might be a time for you to practice relaxation techniques, call a friend, listen to music, read the paper — whatever.

The idea of planning your activities and planning a rest break before your pain forces you to is a key technique of pacing and is called working to schedule.

Remember

 Inactivity is harmful to your physical and mental health as well as to your chronic pain.

 Pushing yourself to keep on at a task without taking a rest results in more pain and the need for increased recovery time.

 Balancing your activity and rest is called pacing.

 Pacing involves:

  • Planning realistic activities each day.
  • Planning several rest periods during the day.
  • Resting before the pain gets worse.

 Using a timer will remind you of your rest periods.

 Organize your activities and avoid rushing.

The Flip Side

It all sounds easy, huh? This seems to be the hardest thing for most us to do – it’s really hard to say that you can’t see your nephew because you had physio and hydro and seeing him will take your activity schedule too far. What if there are two family events on one day? We know that’s going to be TOO much, so how do you pace this?

Pacing takes practice and experimentation, and more practice! Good luck!

 

H-E-L-P!

I have a really big problem with this crap thing called Pacing.

I understand the theory behind it all; I just don’t get how to actually incorporate it into a life: I understand that yesterday I was supposed to walk for 31.5 minutes and that works perfectly well if I leave my house and walk for 15.75 minutes and then turn around to go home. But what is supposed to happen when I’m in one place and Mommy asks me to meet her somewhere? Do I walk for 31.5 minutes and then just…what?

Today, I went to the hairdresser (Mommy’s treat) because today was the day she could fit me in.

On the way back to Mommy’s, I stopped to pick up packing wrap to send all those wonderful bangles (when they arrive). We had lunch, then it was off to the rehab centre for a review with the physio, occupational therapist and doctor.

Regular readers of this blog will know that I have weened myself off sertraline, built up my dosage of Cymbalta and hope to stop the Lyrica. Small problem – I am currently on 120mgs of Cymbalta and 300mg of Lyrica and I am not comfortable with my pain management so I don’t want to stop the Lyrica; and, as an anti-depressant, I much prefer the sertraline (and I think it prefers me!) So The Team decided that after all of that stuff, we are going to reverse it all and go back to where were at the start.

After all that, a quick stop at the supermarket to pick up dinner for Z (who is going to stay the night tonight) and then home.

Then, I think I had my first-ever anxiety attack. Z was due in half an hour and I had to child proof my place again, air the place out so it wouldn’t smell of smoke for the Kid, have a rest (?), empty my shopping bags, etc. H-E-L-P!

I called Mommy and she took Z for the night (I’ll see him tomorrow), and I sat silently in my quiet house for a couple of hours.

Now, my question: how the hell was I supposed to pace today?