Fibromyalgia

You are all well and good until you decide to dump yourself into bed. Bad move. Crashing into bed like that, so suddenly with everything finally completely relaxing at once and your walls are down, the onslaught of sensation is overwhelming.

It is at this point you realize there is no real “easy” day. Some days the pain is not so bad & on some of those days, we handle it better and think we are ok for a bit.

It is that time at the end of that “easy” day that you know you will always have some pain each and every day. Some days it’s nasty, some not so bad and some days we can handle it better than others – either emotionally, physically or with the help of medicine. We will always have pain, but we also look forward to tomorrow for another “easy” day. We also realize that while yes, we have pain each and every day but we also get through it each and every day. We survive and even thrive despite this disease and what it does to our minds and bodies.

We are strong.

I am my own worst enemy. Like many others with Fibromyalgia and Chronic Fatigue, I find the holidays a highly stressful and painful time of year instead of the joyful and happy time it should be.   I am too focused on the perceived expectations of others instead of the reality of my limitation and restrictions..  I know many of us want to accomplish what our bodies are simply not capable of, so we have to adjust our outlook and re-evaluate our priorities. The holidays are all about spending time with those we love most – keeping time and energy for what we hold most precious and dear. Doing so will help reduce the stress and thus the pain and emotional issues that crop up at Christmas.

Pace Yourself.. 
When you think “I’ll just  visit 1or 2 more shops, go up 1 or 2 more aisles, wrap 1 or 2 more presents, bake 1 or 2 more trays of cookies or do that 1 or 2 more things.” – Don’t! Stop before you get to that tired or hurt point. Don’t deal with a fibro or cfs flare, prevent one.

Decorate, but not too much..

Have a smaller tree with few decorations.   I have invited over the nieces in past and we made an afternoon of putting up the tree.

Have someone put up the outdoor lights.

Get a nativity scene that is pre-made as one unit and/or lightweight, so you don’t have to lug many pieces.  I have a smaller plastic Precious Memories one (which the kids love to play with) and a small water fountain of Joseph, Mary & baby Jesus.

Celebrate

Choose carefully to go only to 1 or 2 holiday parties, don’t accept every invite.

If you can, spend time with those you hold dear, not those who will cause stress.

Plan ahead how long you plan to stay and stick to it.

Always keep a supply of regular meds on hand, in case.

Delegate

Pass on some of the holiday chores to others so that while everyone shares the joy, they also share responsibility.

Cooking

Share these responsibilities or making an easier selection.

Do a pot luck dinner.

Choose a one dish dinner to limit the number of dishes.

Choose easier recipies.

Prep or make whatever can be done beforehand and refridgerate or freeze.

Keep to your normal eating habits as much as possible & do not overdo it on sweets and other foods.

Baking

Do a holiday cookie/snack exchange.

Bake cookies in stages – many recipes require overnight in the fridge.

Cheat – buy your cookies.. I know, not the same, but nothing’s the same anymore, is it?

Shopping

Online/catalogs/mail order gifts.

Gift cards & gift certificates.

Plan ahead, make a list & write it down.

Organize your trips into several short shopping trips.

Shop in the morning, or later in the evening when the crowds are thinner.

Start early – once I started on Dec 26th.

Take regular breaks to rest.

if you use a mobility device (cane, crutches, walker), take it with you even if you don’t need it yet

Use a shopping cart for stability, to carry parcals & outterwear.

Use a coat check if your mall has one so you don’t have to worry about your jacket.

Get salespeople for help if you can find them.

Always keep a supply of regular meds on hand, in case.

Wrapping Presents

Wrap using gift bags & tissue paper.

Take advantage of on-site wrapping services – many are for charity.

Holiday Cards

Do them well ahead of time like October or November,

Make labels so you’re not writing address after address, if even it’s ony the return address.

Between the CFS screwing with my sleep schedule, the IBS helping the CFS out with it’s erratic movements, and then adding my TMJ to the situation keeping me awake cuz the codeine contin doesn’t do shit.. I defiantly do not like my body.. Oddly, it’s X-Str Tylenol that helps my jaw, go figure..

And this is occurring when my fibro is actually in a temporary remission. Thanks be to God!

Why can’t this thing in which I am stuck just drop all the health bs for just one day – ALL of it.. *sigh* wow, that would be nice, but likely impossible..

Today was one of those days where I needed a cane for support, or at least I felt I would before I got home. I went to the post office, then the grocery store next door. They didn’t have what I wanted so I crossed the street & went to the other grocery store. I left there with a little more than I was expecting to purchase, so I had two bags that I was carrying, one of which had a heavy bottle of pop. I went a near by restaurant to order & take home supper. This gave me another bag to carry with my cane, the other two bags and my purse.

What was I surprised about? There was a lovely young lady who not only opened the first door out, but also the second door out. And she went out of her way specifically to help me. This is a rarity in my neighborhood, even more so that she was black and young. (I’d say Africa-Canadian, but she would have been Jamaican). Either way, I was pleasantly surprised that someone gave me assistance, unprompted.

My day started very early, so last night I was in bed before 9:30 – unheard of when I’m not crashed out. This morning I rolled out of bed at 6:10am – amazing accomplishment considering I don’t normally get up til noon. Got dressed & packed up & out the door to get the van we were renting for the day. Finished at the Rental agency by 7.30. Head up north to the arena ( I live 20km/12mi from the arena) to drop off the other half. Off to pick up my stepson & grab breakfast & back to the arena by 9.30am. Help unpack the van.

I take a few minutes to watch the Peanuts play (those are the little anklebiters) & then off to be girl friday (even tho it’s Saturday).. Most of the next few hours was spent between doing some in-house tasks & sitting down to read. Oddly enuf, I was *still* doing good.. No pain, no fatigue.. So, at 11.30 I drop off my step-son & get my lunch. I come back by 12 & eat while Rob’s on the floor coaching the Novice kids.. He’s just bouncing off the walls in enthusiasm.. I had to run (yes, run-or as close as I can get to a run) to the change rooms to get an Ice pack for an injury – twice (yes, twice) When his game finishes, I head out to pick up his lunch while the third novice game is on to see who wins. I’m back shortly after 1pm & decide to head to his parent’s place for a nap.

So I’ve been a busy body with bits of activity & bits of no activity, but no real “rest” periods, not like my doc wants (I’ll explain rest to ya’ll another time).. But I’m still not having pain.. & not the devastating fatigue of the CFS.. What I haven’t done by this point is taken my meds… at 12 noon, I am supposed to take my codeine contin – 12 hour release that I take at 12 noon & 12 midnight.. So, no wonder when I wake up form my nap & I’m sore and achey and still & starting to hurt.. *this* is when I realize I haven’t taken my meds. Of course, where are they – the arena.

When I get to the arena Rob’s ready to go.. immediately loads up the van & off we go – no real time for me to take anything.. with a detour to Dollaramma & I fergot about my meds again.. So I don’t get my meds until dinner – we hit the Keg on the way home and while waiting in the bar for our table, I take them.. 5 of ‘em.. ya, that’s a small chunk of medication. But interestingly enough, I’ve started to feel better after I had gotten moving around.. And interestingly, My leggs didn’t ache when I got up from sitting at dinner like they normally do.. When I sit for extended periods, like a social chatty dinner that lasts almost 2 hours, then ya, the leggs are usually difficult to get moving..

So, now we’re home, the van’s unpacked, I’ve got the overnight info for parking the van cuz we’re not going to take it back tomorrow morning. I’ve gone on FaceBook & Feed my virtual roses.. I’ve done a blog post & now writing this one at almost 11pm and I am still going.. Where’s Rob? Crashed out on the bed. But I am heading to bed soon too..

I was told the other day by the person who I look to most for help & support with my fms & everything else, exactly that. He doesn’t believe me. He thinks I’m either making it up & have fooled all the doctors and specialists, Or it’s all in my head. He said he’s never really believed me since he met me.. He thinks I’ve been lying to the world this whole time, that I have been putting myself through test after test after test, several invasive just to play sick? He thinks I’m a leach on the government rolls because I get disability (and we all know how easy that is to get). That it’s my self esteem that’s screwing me up. He’s thinks that I’ve got nothing of value.. Nothing to offer.. I’m nothing of value.. *sigh*

How much more of a stab in the heart is that?? How much more hurtful can one person be??