You Can’t Do Everything, But You Can Do Something.

With Fibromyalgia and other chronic pain you can’t always do everything you want, and we will always be limited in what we can do, but there is always something you can do instead – always an alternative.

While you may not be able to go to the amusement park with your friends/ family because the rides will hurt too much or because you can’t be on your feet all day or maybe it’s an all day thing that you can’t do or for whatever other reason, there are other things you can you. Maybe you can go mini-golfing with friends instead. Still a social activity, still something physical, still something fun and still hanging out with your friends. If that’s still outside of your wheelhouse, try just going out for a drink even just coffee to get out and be with those you love. If you are bedridden, why not a virtual chat?

You can apply this to all other aspects of your life. Certain things you can not do and may never be able to do again, but there are always things you can do.

The Spoon Theory & Chronic Pain

I shared the spoon theory in my last post here.

I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition.

With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits put on me by my medical conditions. Like Christine, the author, I have a limited amount of energy that I can use each day. Some days I start with more energy, more spoons. Some days I start with less energy, less spoons.

I hope this gives you a new understanding about what it is like to live with chronic pain and chronic illnesses like ours.

My next post is about The Matchbox Theory which I think is actually a little more apt.

My Name is Fibromyalgia

From Chronic Pain Life Facebook group

MY NAME IS FIBROMYALGIA

Hi. My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!

I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Oh, yeah, I can make you feel anxious or depressed, too.

If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me.

I’m rolling on the floor, laughing. Just try.

You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ♥️

Battling Weight Gain

As mentioned on Tuesday, I have put a good chunk of weight back on and I’m now starting the process of fighting it back off. Here is my plan:

Exercise: I have reached out to the personal trainers at my gym to inquire to see who would be the best fit for me to set up an exercise regime for me to follow. I’m more likely to do so if it’s set out for me. Part of what helped me lose weight last time was running but I hate running.. At least running for running sake.

Comfort Food: I am no longer bringing in food that I consider to be comfort food that is deadly to the waistline. This means no more cookies or pudding or chocolate. It also means no more ordering pizza or other fast food.

Portion control: I have to return to watching exactly how much I eat. So if I make a pizza from scratch I can’t eat the whole damn thing in one sitting. That is no longer allowed.

Weight Gain

Over the last few months, my mental health has not necessarily been the greatest.

Motivation has been down, so getting to do things that aren’t scheduled has been a challenge.

Fatigue has been high, so having the energy to do even the things that are scheduled has been a challenge. I should follow up with my doctor to ensure it’s not just the fibro cuz it’s been more as of late & I am getting my B12 shots done regularly now.

Pain has been escalating. It hasn’t been high enough to warrant a visit to the ER, but it is higher than it was before Christmas. It’s usually been muscular pain in my leggs, sciatica pain in my lower back or just plan old headaches or migraines (a bit of both). Pain doc can’t help with the first or last beyond medications, and I’ve been getting epidurals for the sciatica. Unfortunately my back popped a month or so ago, so the epi hasn’t been as effective (yes, I’m following up with my GP on that when they return my call)

Comfort food has been the go to lately, most of which has not been healthy. Junk food, cookies mostly leftover from Christmas, candy, chips, etc . Not the best choices.

The accumulation of all these factors has resulted in significant weight gain..

I’m Fine

“I’m fine” is the biggest crock of shit going on out there.

If I ever say I’m fine, call me on it because I am lying. Lying blatently through my teeth.

I’m fine can mean so many things:

• I don’t want to talk about it.
• I’m trying to ignore it.
• I’m not able to deal with people today, and unfortunately (don’t take it to heart) that includes you.
• I’m in agony & don’t want to inflict my pain on others.
• Brain is mush. Thanks to my meds! & Thanks to fibro fog
• I honestly don’t know the answer
• My mental health is screwed up not the physical.
• My mental health is screwed up in addition to the physical.
• I’m getting pain from multiple directions and can’t focus

It’s most likely the first one or last two, but can be anyone of these. If I make emphasis of “I’m fine” please don’t push it.

Allodynia

Allodynia – That’s the technical term for feeling your skin 24/7. My skin is so sensitive that a gentle breeze can trigger a pain response on a bad day. Pants are torture, but skirts are worse. I hate leggings because they make me constantly aware of my skin. Which I assure you is not nearly as much fun as it sounds.

A quick anatomy lesson for the integumentary system (hair, nails, skin and sweat glands) your skin is by far the largest organ you have. It’s not just a meat sack holding your body together. There are billions of nerve receptors in your skin. They are designed to bypass the rational mind and are hardwired into your subconscious or reflexive mind. This is why you move your hand away from the flame before you even realize you’re burning. There are about 2 billion or so nerve endings in the outermost layer of skin. More in the under layers, the hair, sweat glands etc. They are there to alert us to potential danger and to alert the brain that we have been damaged.

You have different nerve receptors for different things. Some are ticklish. Some detect change in Temperature. Some itch. And some say OUCH!

Now imagine if something happened and suddenly all of the receptors start telling your brain OUCH. Meaning that breeze causes pain, the brush of your hair across your skin causes pain, warmth/cold causes pain. Sound vibrations caues pain. Clearly this is a problem with the wiring. But they don’t know what it’s caused by.

When my skin hurts I don’t want delicate gentle touch, I want specific, firm and with intention touch. I want clear and obvious sensation (think stingy and thuddy rather than feathery or ticklish)

Author – Unknown.

– – –

I do get this myself. Mine is thankfully on & off . Like the OP, I prefer firm contact, but I also need to know it’s coming. It’s easier to just have no contact at all tbh.

It’s weird. If I’m sensitive with this, a hair that falls out of my head & lazily makes its way down my back or my arm can be excruciating at worst, mildly painful at best.

I even have a “Don’t Touch Koolaid” Necker for Cubs. Meaning they know they can not touch me when I’m wearing it. They don’t understand why – just that it hurts me alot if they do on those days. Fortunately, I don’t have to wear it often

Christmas Cookies

Every year for Christmas, I bake cookies to give to friends and family for gifts. To make it easy on myself, I buy some of the dough pre-made. This also allows for a little more variety than if I just made six batches of peanut butter cookies or sugar cookies.

I tried something different this year. Yes, I still bought the pre-mix dough and I also still mixed up some dough. What was different this year is that I only baked the cookies that I needed as I needed them. Previous years I would bake all the cookies and then freezing them all.

While this does take more time, it has been spread out over multiple days. It limits doing repetitive and eventually very painful actions for hours & hours on end. Plus, I’m also not spending one day constantly baking

The other benefit is that for most people, the cookies are fresh – straight from the oven almost in most cases..

Unfortunately, I did not see my brother’s family this year due to a really bad storm the day before our family dinner. He was still digging out with intermittent power. His eldest god to school near me, so I will send the family’s cookies home with her after the holiday break. Until then, they are frozen cuz dough only remains good for a limited period of time.

The only other ones that were baked & frozen were the gluten free ones for my neice’s & SiL’s gluten intolerances. That was done for two reasons. First to ensure that all the gluten-free products were baked on a gluten-free surface and not switching between gluten-free and regular cookies. Second to keep all the gluten-free cookies together. I didn’t want to get them mixed up.

Be Kind – You Don’t Know The Struggles Of Another

A well written article from CNN about how depression, a medical condition, impacts the lives and deaths of people struggling with it. PLEASE READ.

Some particular statements I found poignant:

• “Just because you can’t see it inside someone, doesn’t mean the pain they are experiencing isn’t real or overwhelming.”
• “With cancer, you see people you love deteriorating on the outside. When someone struggles with mental health issues, you often don’t see it.”
• “There’s a big difference between wanting to end your pain and wanting to end your life. But some of those who struggle with mental illness may not be able to see the difference.”
• “Stop assuming you know what someone else’s life is like, or what it’s like to live in their head. You have no idea what somebody else’s life is like. And neither do I. You have no idea what pain or trauma a huge smile may be hiding.”

If someone has depression or even occasional suicidal ideologies, offering support instead of criticism is always the best way to go. You do not, can not, know how much someone is struggling with their demons. As Ellen says, “Be kind.”

Those who I know who should read this the most won’t even bother. They will consider themselves better even when they have struggled with their demons.

November is RSD/CRPS Awareness Month

RSD stands for Reflex Sympathetic Dystrophy which is an order term for CRPS which starts for Complex Regional Pain Syndrome. November is the awareness month for this multi-named chronic pain condition . See the images below for more information..

---

---

---