Fibromyalgia and Moving

Fibromyalgia is not quite helpful when you're trying to move. Today at two points I got to the fatigue level that was painful. I've had bright spots on my cheeks since mid afternoon, which is a good sign that  things in my body are not going well.

I plan to take some comfort items with me, pillows, a blanket, etc, tomorrow so that when I need to rest I can, vs having to rest in a painful position. Today I got the keys, utilities on, etc etc, and my dad started paint prep, with hubs helping him finish it up. Tomorrow I hope to clean and start spackling before dad arrives, have at least one room ready to go for paint. But I just can't push myself to do as much as I was able to in the past. This is a really hard thing for me, but I simply cannot work myself out of commission again this week, it will have consequences-pain, mostly, fatigue for days. I had to rest most of yesterday and the prior day because I guess I packed too much on Sunday. We got a lot accomplished, but the consequence of doing too much was two days' rest. Not good. I need to really be careful.

I did get my hip shots yesterday. The soreness is definitely still present, but the normal ache is mostly gone. It will be interesting to see how I am once the soreness wears off.

Muscle relaxer and bed, that is the rx for tonight!

Moving Day is Coming

We signed a lease on a new house today. I'm very excited about moving and about how the new house will be, but the thought of the process of moving has me scared. I don't have the energy for normal activities, much less something this stressful/tons of work! Yay for us, this will be the first place we've moved together into, and I'm very excited about that.

My tentative plan is to pack my arts/crafts supplies first, then books, then clothes, toiletries etc, then kitchen. These are my main categories of items. For some reason my keepsakes are chunked in with art/craft supplies. Funny how that works.

I have a splitting headache right now. I've done everything I can for it-including having gone to the chiro. Maybe I should go to the pain clinic tomorrow for the headache shots. Just thought of that. Could be a good thing!

Fibromyalgia Pain

I had my appointment at the pain clinic Monday. Apparently I do actually have something wrong with my hips - bursae - and will get cortisone shots in them next week. Good to have part of the pain resolved but there is still just so much of my body that hurts, all the time. I'm kind of at my wits end. Fibromyalgia has got to be one of the most misunderstood and under treated disorders out there. How can someone be in so much pain, and yet, nothing really to be done about it.

The more time that goes by, the more I am convinced that a dramatic lifestyle change is needed. I am thinking about going gfcfsf. Gluten free, casein free, sugar free. I feel like this trio will be incredibly difficult to maintain...but what if it works?

Off to Sister's House Today

I'm looking forward to seeing my sister and nephews, but not looking forward to the pain that is possible this evening. My nephew is in a play tonight, that starts at 7-I'm generally shut down by that time! And after a car ride.... Man, I'm afraid, this could be bad. Hopefully the weather at least stays stable through the trip, if a front moves in, it will be pure misery. But, there's always the chance it will be ok, and I do get to sleep on my sister's comfy couch, so that's some good!

Heart Quiltie, and hope on the horizon

Heart Quiltie, Approx 12" sq, Cotton
Hand embroidery, and hand quilting

I'm totally loving the hand embroidery and quilting lately, it is relaxing and making me happpeeeee with the finished products. The Heart Quiltie is #2, I did a pig first that went to my MIL, then the heart, now a house and tree. I love the simplistic imagery and texture, and colors. I am working with a limited palette of colors and fabrics, which in general tends to let me create better work. Funny how that happens!

In other news, I have a pain clinic appointment on Monday morning, bright and early. I hope hope hope they can help me, and don't turn me away for some stupid reason. I know some clinics would, for how I've been managing the pain so far, but until there's another plan in place, I can't stop the other thing. It is what it is, and I hope they understand.

I hope they can help me, really truly, and do more than simply shove high powered pills down my throat, though, at this point that is help, too.

Quilting Therapy

I'm hand quilting. This is a very strange thing for me to be doing, but its very calming and therapeutic. The piece also involves hand embroidery, which is also big for me right now. Hand stitching in general. I was knitting with a little crochet on the side until about 6 weeks ago, and abruptly became disinterested in it, due to depression probably. The hand sewing is a little stressful on my hands, but just because I didn't do much with them for about a month, I think. And it uses different little muscles.

The pain level right now is low. I woke up several times in pain overnight, and this morning my leg was hurting pretty bad, but I'm doing ok right now. Getting ready to call the pain clinic and see if they got my referral yet-and what the status is. I hope they take me as a patient, I'm not sure what I'll do next if they don't. Something's got to give!

Karina Hansen, Denmark

http://dxrevisionwatch.com/2013/05/11/something-rotten-in-the-state-of-denmark-karina-hansens-story/

This story has made me physically ill, sick to my stomach, and very upset. This woman was taken from her home, with police force, for which no reason was given. She is now stuck in a hospital not equipped to care for her, receiving care she is forced to accept, including psychiatric care. This is SICK.

I am so upset about this I need to sort out my thoughts before I can write them!

Kicking off another week of Fibromyalgia Fun

I know it may seem like my life revolves around my fibro, but it doesn't really-its just the topic of this blog! This morning I've been hand quilting on a hand appliqued and hand embroidered project for my MIL that I hope to give her later this morning. Its a pretty fun project.

This week I hope to get a Pain Management Clinic appointment made. Today I hope to make tracks on getting ready to move/a new place rented/out of our lease. Wish me luck there!

My goals this week revolve around my writing, but one goal I HAVE to make and follow through on is getting some exercise each day. A walk, bike ride, something to get my heart pumping even if just for a few minutes. Baby steps are the way to go.

I need to also do research on the Paleo diet, and read the book. The thyroid thing was a wakeup call, this is not going to just magically go away, I'm going to have to work at being healthy, harder than normal people do!

Strange Sensations

I think one think Fibromyalgia does for you is make you aware that no-pain is a state of being not just the default. Because unfortunately the default is pain. Right now I have "ants crawling under my skin" which is nerves firing at nothing, feels kind of like a burn and cramp at the same time. This is the worst type of pain there is, to me, because nothing soothes it. Soon my muscles will begin to twitch and I'll basically have to tranquilize myself to sleep to get out of it. I've already started the process, tbh, with 1.5 mg ativan.

This is the type of pain that was so /different/ from anything I'd experienced on a regular basis, that prompted me to finally tell my doc, hey-what's up? When I feel like this, before the must-sleep stage, I want desperately to lie down but if I don't keep distracted, the pain gets worse.

I haven't had a cigarette in 2-3 hours, about to change that.

Well, its not my Thyroid

I ended up not going to grandma's/mom's houses today, which is good, I just got a call that really upset me, and I didn't think it would. My thyroid numbers are within normal range.

Let me say that again.

My thyroid tests show that everything is within normal range.

I'm letting it sink in, I've already had a good cry. I wanted there to be an answer, a reason for all this, but no, no dice today. I think the lack of answer has me upset, not that I wanted something to be wrong with my thyroid really, but it would have been an answer to at least part of my symptoms.

Oh well.

Here goes another long evening.

To Grandmother's House We Go

Today I'm supposed to go to grandma's/mom's house, they live next door to eachother about an hour and fifteen minutes away. Its a short enough drive, but wipes me out. With the weather so bad, rain and tornado forming conditions, I'm not sure if it is even a good idea to get on the road. Oh well, I'll make that decision a bit later in the day.

Anxiety this morning

I'm having a lot of anxiety this morning, it is almost 5 am, which is a normal time that I'm up (I have something like reverse-insomnia, wake up too early vs staying up all night). It started with the coffee pot, which is where every morning starts, but two sips of coffee with vinegar in it will do this to ya. I'm still not sure I got all the vinegar out of the machine, but I'm drinking the 3rd cup brewed, after rinsing it more.

Today I have a photo shoot planned, a beautiful model in a beautiful location. I really should be looking forward to it more than I am. I'm not really sure why I have the feeling I'll have to cancel, but I really hope not! The pain last night was pretty wretched, ended up finally sleeping, but it was hard won.

I think there is vinegar still in my coffee. What a wonderful fucking morning.

Coming out of the Fibromyalgia Closet

I try try try to not let fibromyalgia affect my "life" too much, but it is inevitable that it does. The pain and fatigue have to be taken very seriously in order to avoid getting so fried that it takes days to recover. This "delayed reaction" time is probably part of what makes things so hard to plan.

I was doing photo shoots almost daily for a couple weeks, and starting the second week felt the "burn" of doing too much. Ended up canceling several shoots in week 3, and I haven't taken any photos at all since Saturday-and it is now Wednesday. I may be taking some pics tomorrow of a new model, but I'm waiting to talk to her, I think she is still at her day job.

With all the cancellations I made the decision to "come out of the closet" with my pain/fatigue issues, telling some people that I have fibro, others that I have a chronic pain condition. Everyone in the photographer community that I have told has been very supportive. This would not, I think, be the case for every person in every job. Talking with a friend yesterday-we actually made it to Starbux!-we got to talking about the taboos related to admitting you have pain. From talking to family to aquaintences, it truly is a type of coming out of the closet, a somewhat shameful (at least, potentially the other person could think this) admission, that you may or may not have come to terms with. Sometimes you're forced out, other times you can "hide" it for a while, or forever from some people-depends how involved they are with your life.

I have found, with some people, the word fibromyalgia is akin to hypochondriac. Nope, sorry folks, you are misinformed. Even trying to explain it, once I used the phrase "there is the feeling of pain but not anything really wrong with your body" and then I realized how... incorrect that is. Something is wrong, dreadfully wrong, its just a matter of figuring out what it is!


In other news:

I had complete thyroid blood testing yesterday, should hear the results tomorrow. Crossing fingers that something *IS* wrong this time, because thyroid issues can be medicated and lead to a much better quality of life. I'm half afraid though, that things will come back "normal" and it will be another dead end.

Magazines

I had a strange moment yesterday in the grocery store. I caught myself glancing the headlines for anything pertinent to me, particularly a fibro article. The odd part of it, is that I first saw the name in a magazine, Woman's Day or something, many, many years ago, and thought... Hey, this pain isn't normal? Now, seeing that I'm 29 and this probably occurred in the 90s, we can see how long I've had undue amounts of pain. Research is coming forward about fibromyalgia, but it isn't hitting the newsstand. Unfortunate, considering the number of diagnosed and undiagnosed cases.

How did you find out that your symptoms fell under the name fibromyalgia? How long was it between that time and the time you were diagnosed and treating it?

On Fibromyalgia and Fatigue

Fatigue is one of the greatest things I try to overcome lately. Pain first, then fatigue. Luckily when you're in pain its nice to go to sleep. Today I just very slightly over did it, and I'm a bit fried tonight, but thanks to copious amounts of caffeine today, I'm still a'goin. I had my regular 2 pitchers of coffee, a monster, a doubleshot espresso, then tea all evening. No wonder I'm still awake. Unfortunately I'm restless and not really feeling productive.

One thing I'm super glad about is that my hands very rarely hurt, only if I've slept wrong or something of the sort. Tonight I was able to *FINISH* my sister's month-late birthday present. An embroidery of a fairy. Its cute. the pattern came from a coloring book. It kind of looks like her!

The best cure for fatigue is... oh wait, you thought I was a miracle worker? Sleep, regularly and long enough, and that's all that does it. Faking it with caffeine will only get ya so far. Tomorrow I will probably suffer for the caffeine I've had today. 

Canceling Things

I get so tired of canceling things because I don't feel well. There used to be a time when I wouldn't cancel things so often, it was a rare occurrence, but lately I'm doing more canceling than *doing* because I feel so bad later in the day. I've talked to my therapist about it, and she agrees that its not good, but the only way to not cancel things, is to not make plans, and that isn't a good option, of course.

I dropped the ball on a shoot I really want to do. Supposed to be today, but I crashed yesterday before I could make finite plans with the model. We'll see when she gets back to me this morning if we're going to shoot, but I kinda doubt it will happen. :(

I did OK yesterday, other than going to sleep pretty much for the duration, at 4pm. I woke a few times but went back to sleep within the hour, now here it is 12 hours later and I'm up. I need to write the next chapter for my book but I'm feeling a bit intimidated. I think after the edits my first two chapters are pretty good and I don't want to have a drop in writing quality. I'm stupid to be intimidated by myself, I suppose, but the edits by TJ really did make a huge difference!

Here goes nothing!

Off day

Pretty OK seems to be my status lately, just... okay. Not good, not bad, just okay--at least in the mornings. It gets bad in the late afternoon/evening. Never especially good lately, though I can be thankful only my arms are hurting this morning. 

Today I have planned... nothing! Nada! Zip! Zero! I'm going to while away the day working on my writing I think, which is due to my writing buddy tomorrow morning, might send it tonight. Still have to finish last week's edits, and then move forward on the next chapter. I'm excited this is getting done, I think it will be great!

Ended up in the ER last week

And they were pretty much like, what do you want us to do about it? The nurse and the dr both asked. I wanted at the very last, temporary relief from the pain, ended up with a shot and a couple pills, and an RX for the pills. I slept pretty well until i started having an acidic tummy around 2. Up and down a few times, then now I"m up and drinking very creamered coffee. 

One of my goals this week was to pull up out of this mood spiral. Considering yesterday's hysterical crying, I haven't done that. But this morning is ok, most mornings are. I need to get back to my creative work, I just don't feel inspired most days, but I need to force the issue.

Soon my husband will be waking up. I am thankful every day for him and his unwavering support.

Coping

I am having a rough time lately coping with the realities of living day to day with chronic pain, chronic fatigue, chronic brain fog; just not being able to be myself! I miss having energy the most. The physical and emotional energy to be fully engaged with life. 

Fibromyalgia is my daily friend. Sleeping through the night is a rarity, and then waking up is all pain, for a while. I finally get going, only to remember to take my meds and eat so I don't get sick. Bop around for a few hours, sometimes productive, sometimes not. Then the pain sets in, the anxiety, the fatigue, the sheer wretchedness that is my daily life. By evening I am so wracked in pain that I can't function, only to fall into a restless sleep...

Fibromyalgian Egg

This is a phrase I just came up with, for the purposes of naming this blog. Welcome to, what is apparently, the Fibromialgian Egg.

Show of hands (leave a comment) for those who have fibromyalgia!



Comment:
I've been diagnosed with fibro a little over a year now. And an egg am I. I have to be very careful not to overdo, or I will get fried. I've been having depression and anger issues lately, not really normal, the anger anyway. And the depression sucks as usual.

I am in daily, near constant pain. I have trouble sleeping, and trouble staying awake. Thinking and memory lapse all the time. and I have mood issues, used to be called bipolar, now, depressed personality disorder with a side of borderline personality disorder on the side.

I'm fat, with gastric bypass. Need to lose about 75 lbs to be where I want to be. Do you know how hard it is to get through daily life with fibromyalgia symptoms, much less exercise? Pretty damn hard, lemme tell ya. I have trouble eating enough and eating too much, but most of us do.

Anyway. Bye for now, and don't get fried.