Posts Tagged ‘Coping’

The Spoon Theory

January 8, 2021

The Spoon Theory is a document written by Christine Miserandino. It is based on a conversation with a friend of hers who was trying to understand her chronic invisible illness. In Christine’s case, she has Lupus.

So, Christine tried to explain how her health limits her, but was having problems. She was at a diner eating some french fries, so she came up with equating a spoon to a unit of energy. For example 1 spoon for brushing your teeth, 2 spoons for taking out the trash, 3 spoons for a shower, 4 spoons to make dinner, etc.. We, with chronic health issues have a limited number of “spoons” or energy and when it’s gone it’s gone.

Check out this document because it is a very relatable way of explaining to most about chronic illness.. I’m not just talking Lupus, but other invisible medical conditions including Fibromyalgia, Ehlers-Danlos syndrome, Cystic Fibrosis, ME/CFS,

If the attachment is unavailable, please try the original at https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

They Can’t See It.

June 21, 2020

A few days ago my Dad asked me if I was gonna join him & Mom at the cottage this weekend. I said no. He stated they were going to my brother’s on Saturday then come home. I hedged, taking a deep breath, then my Dad stopped, looked at me and says “For Father’s Day.” Well played, Dad. Well played.

So, Satuday.. (Dad decided to just go up to my brother’s on Saturday & not the cottage.) And just getting out of bed, I can tell that this was not going to a great day.

Ok, 2 hour drive to my brother’s.. In the back seat of the van. We did have a pit stop part way up to get out & stretch. I also used my Obus Form back rest in the van. So, it could have been worse.

We got there shortly after 1.. I frgot take take my noon meds until about 2-2:30 only to realize, that while indie bring my Robes, I grabbed the wrong bottle & did not have my prescription muscle relaxer. So, I made do with the Robax instead.

We then spent the entire afternoon in lawns chairs on the grass, then the deck for dinner. As the day wore on, I became in more & more pain, even taking extra Tylenol, more than I’m supposed to.. I had no opportunity to rest, or to even lay down. The day, was not going well, health-wise.

But apparently I hid it well. Mom didn’t even know it was having significant problems. That is until we got in the van for the 2hr drive home. Then she noticed.. & asked if I was ok. Of course, I said no, but there’s not much to do about it.

Then I guess Dad figured that he should get us home faster and it was a really rough & jarring ride. That doesnt help, getting jostled around the back seat as he takes turn quickly and sharply.. But he did get us home 13 minutes faster than expected.

As you can tell by the publish time, it’s morning – a time i rarely see, but cuz of all that happened, I’m still awake and in pain cuz I overdid it.

So, I figure one of the following happened: 1. They Can’t see it. 2. They don’t see it, 3. They won’t see it . 4. I’m getting beat better at hiding it.

What do you think?

Pages: 1 2

Good Day

June 20, 2009

Today was a good day, physically speaking. Today was the Lacrosse Day of Champions for my step son’s Lacrosse League. Rob coaches 2 teams & is the House League Director.

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 my 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 until tomorrow morning. I’ve gone on FaceBook to geed 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..

But it’s been a good day… Am I gonna feel it tomorrow? Unfortunately, yes.

Adjust Your Anger Management Style

May 30, 2009

Adjust Your Anger Management Style—Reduce Your Pain
By Dr. John Fry

Researchers published some very interesting findings this April in the European Journal of Pain regarding how much pain you feel when you’re dealing with angry feelings. The authors conclude:

“Our study suggests that anger and a general tendency to inhibit anger predicts heightened pain in the everyday life of female patients with fibromyalgia. Psychological intervention could focus on healthy anger expression to try to mitigate the symptoms of fibromyalgia.”

Previous research has shown that inhibiting anger increases pain in other pain conditions, as well. It turns out that when you suppress anger, you’re actually more aware of it and are angrier inside. This internal churning then creates more pain for those with fibromyalgia.

Does that mean that blasting away will reduce pain? Not really. It’s not a good solution, because then relationships often deteriorate. Research on marriage has shown that if there is a harsh start-up to a conversation, 90 percent of the time that conversation will fail to resolve the issue. Couples who say five times more positives than negatives to each other have almost no chance of divorce, while couples with only twice as many positives as negatives in their interaction have a fairly high probability of divorce. So blasting away clearly hurts relationships. This increases the possibility of anxiety and/or depression, and we know from previous research that both of those states are predictors of more pain in the future. Then what’s a man or woman with fibromyalgia to do?

By handling your anger better, neither blasting away nor by ‘eating it,’ you actually can decrease your fibromyalgia pain

Below are five practical tips that I have found to be helpful gleaned from over 30 years of private practice as a psychologist in Orange County, California, as well as from giving over a dozen seminars on anger management:

1. Choose assertive over aggressive or passive ways of expressing your anger.
You’re not left with the two bad choices of aggressively blasting away or letting your anger eat you up inside. Many people aren’t clear about the difference between aggressive and assertive, and so they choose the passive approach. Pressure and irritability grow, and then they blast away. Afterwards, guilt takes over and they drop back into a passive role until the pressure builds again. Not a fulfilling cycle, is it?
Sometimes people choose the “passive aggressive” option and use sneaky aggression. This includes trying to make someone else feel guilty without appearing to be angry at them. An example would be saying within earshot of an unsupportive spouse, “People who don’t cut us fibromyalgia patients some slack are insensitive and uncaring.” This tactic just tends to make others pull away from us, though.
The assertive option has the best chance of resolving the issue, reducing your anger, and hence reducing your pain. Here’s a great way to understand the differences between aggressive, assertive, and passive. When you are aggressive, you are only expressing your own needs: “You are being a jerk because you don’t understand my pain.” When you are passive, you are only looking at the other person’s needs: “I’d better not bother him with my concerns. It will only rock the boat.” When you are assertive, you are speaking up for your own needs while still taking into account the needs of the other, taking into account both people’s needs:“I know you’ve been really preoccupied with work, and it must be hard to hear about my pain, but it makes me feel closer to you if you listen to how my day went. I’ll try not to belabor it.” When first learning to be a more assertive person, it helps to think of a way to say something where the first clause in your sentence addresses your listener’s needs, and the second clause expresses your needs.

2. Understand that anger is usually a secondary emotion.
Anger is almost always preceded by one of four emotions—impatience, frustration, fear, or—most commonly in relationships—hurt. It helps to ask yourself the question, “If I couldn’t feel angry, what feeling would I be left with?” Then try to express your feelings at that level. Many times it makes your feelings a lot clearer to the other person, and usually they have an easier time hearing you and responding with less defensiveness.

3. Look at your “self-talk” and clean up the distortions that make you angrier.
A situation, however difficult, does not automatically translate into your mood. Its how you interpret the situation, what you tell yourself about it, that in the final analysis determines mood. If you throw a pity party for yourself, you view other people as horrible for picking on you, a poor defenseless creature. Then you get angrier. If you exaggerate the other’s offense, using words like “always” or “never” instead of “usually” or “rarely,” you make the other out to be a much worse person, which fuels your anger further. If you assume the worst about other’s intentions, you miss the positives they are trying to express by telling yourself they don’t really mean it.
Any time you are angry, ask questions of your angry conclusions: “Are there other ways to interpret her behavior? Even though this hurt my feelings, has he been nice to me in the past? He did that once—does that mean he always will do it?” You may still be angry, but usually less so—and this gives you a chance to see the issue more in tune with reality, rather than as an exaggeration of reality.

4. Look at the needs behind the other’s position or behaviour.
Most issues between people are not like a pie where, if I get 70 percent of my needs met, you will only get 30 percent of yours met. There are win-win solutions (and lose-lose solutions)! Instead of arguing your position and fighting the other’s position, look at your needs and theirs to see if there is another option that meets more of both sets of needs.
One way to increase the chances of understanding the other’s needs is simply to ask and then try to paraphrase their response back to them. It is easier to do this if you realize that understanding is not the same as agreement. You can understand without necessarily agreeing. If the other person feels understood, though not agreed with, there is usually less fuel to their fire. This increases the chances of a resolution, or at least of an accommodation where the rough edges get worn off of the disagreement so it is more tolerable to both of you.

5. Learn how to forgive, especially when the other has apologized.
My favourite quote on forgiveness comes from the late Lew Smedes, who was a professor at Fuller Theological Seminary: “When you forgive someone, the person you most take off the hook is yourself!” Forgiveness, particularly when the other is trying to do better, releases you most of all.
It helps me to forgive another if I ask myself these questions—“Have I ever done something like that to another?” and “Do I need forgiveness for things that I have done?” While forgiveness is at the core of religious faith, it is also key to good relationships.
Another helpful way of looking at forgiveness is as giving up the right to hurt back. Revenge is really not sweet, because we have lowered ourselves to what we condemn in others!

In summary, by handling your anger better, neither blasting away nor by “eating it,” you actually can decrease your fibromyalgia pain. Try practicing these five tips for a week and see if you don’t feel better. I’m rooting for you!

Dr. John Fry is a psychologist in private practice in Newport Beach, California. He works with men, women, adolescents, children, and marriages. One of his specialties is working with fibromyalgia patients. His wife has fibromyalgia and he sits on the National Fibromyalgia Association’s Board of Directors. To learn more, go to http://www.drjohnfry.com/.

Source=http://www.fmaware.org/site/News2?page=NewsArticle&id=8929

What do I do?

May 30, 2009

For my fibromyalgia, I currently take the following Medications/supplements

  • Multi-vitamin – Naturapathy Dr does not recommend Centrum or most pharmacy brand multi’s
  • Calcium & Magnesium with vitamin D – Calcium cuz Women with Endo are more susceptible to Osteoporosis. Mg & D to help absorb the Calcium. The Magnesium also to help with muscle spasms & charlie horses. I have found that it has helped.
  • Fish oils – Generic fish oils, minimum 1000mg a day .. Well, I try to. Naturapathy Dr recommended 1000mg-3000mg daily of the EPA+DHA to help with mental acuity. I’m still waiting for the fog to lift, but I’m not usually getting enough to impact because I fog up & forget.. Lovely catch 22 there.
  • B complex to help with stress and ensure that I get enough B’s. No, I don’t take a stress formula. Just a normal B complex.. either 50mg or 100mg
  • Codeine Contin for maintenance pain.
  • Tylenol #3 for breakthrough pain
  • Oxycodone for severe breakthrough pain
  • Flexeril (Cyclobenzaprine) as a muscle relaxer. I find it better than anything OTC..
  • Probiotics to help regulate my digestive track – it works, ‘cept when I have an IBS flare or food sensitivity
  • NSAID, but it’s for my Endometriosis, so I don’t really know if it does impact my FMS or not.

For my fibromyalgia, I currently participate in the following exercise:

  • Aqua-fit, really carefully – I’m just getting back into exercise, so I am trying to get to the gentle classes. My local YMCA gym has a class or arthritics and for osteoporosis. Aqua-fit is a good choice because of the buoyancy of the water, it doesn’t impact my knees, and it’s a gentle cardio
  • Seriously, right now that’s it. I need access to a hot tub to do further exercise to keep my body warm.

For my fibromyalgia, I intend to return to the following exercises:

  • Yoga with the hot tub – Yoga provides gentle stretching while working on core strength and balance. The hot tub helps to keep muscles relaxed afterward.
  • Keeping up with Aqua-fit – see above 🙂
  • Walking the track to music with the hot tub – I got into walking when my nieces were born, walking with my sister. After I joined the Y and my nephew was born, I would take him in his stroller to walk him around the track. He’s too old now, but I have found it enjoyable with my MP3 player (or CD player back then). I sometimes dance a little bit and my pace changes with the music I’m listening to. It’s hard to overexert myself. 🙂 The hot tub helps to keep muscles relaxed afterward.

A benefit from the exercise is that I tend to be tired out afterward and relaxed. This makes evening workouts ideal in that I go home, go straight to bed and will sleep well, with a decent amount of healing rest. This improves me, physically, emotionally and mentally for the next day.

For my fibromyalgia. my spiritual side is limited. I don’t go to church often, however I do find solace in my home church’s sanctuary. I’ve moved away from my home church and have yet to try out the sanctuary here. I also find the same ‘state of grace’ from music, especially my churchy music 🙂

For my fibromyalgia, because of my physical limitation, I am limited socially. Most of my social interaction is via the internet on Twitter, Facebook, Email, etc.. The alternative to that in real life is with my SO and his friends. Most of my friends no longer talk to me, or are too far away for more than email. The classes as the Y present a new socialization source, which I hope to be helpful. With the improvement of my health I would like to return to scouting in some sort of part-time or limited capacity.

For my fibromyalgia and my cognitive abilities, I am starting this blog. It will help keep me thinking and requires research. It also provides a creative outlet. I also enjoy doing word searches and have, on recommendation on my therapist, started to colour and have other crafts options available to me.

For my fibromyalgia and an emotional aspect, I have a councilor and have been placed on anti-depressants. While my time with her is limited I do find that I feel better after I speak with her. Additionally I have the support with my SO. While sometimes he can not understand and becomes frustrated, I know he only has best intentions where I am concerned.

How do I cope? Not well. Other than the limited exercise mentioned above, the odd screaming match and the rarer still church visit, I have no real outlets.. Which sucks. Before I got sick, my outlets for frustration and anger and stress were physical. With the fibro, I have lost that. Any suggestions are welcome 🙂

Welcome !

May 29, 2009

Welcome to my Blog!

My name is Kelli.. But I am also known online as Neon Rose and it’s variations (I answer to the name Neon, IRL).. I am also known, in scouting circles as Koolaid – yes, as in the drink (long story, I’ll tell ya some time)

This blog is about my life, my medical issues and any information I can share thereof.. I have been diagnosed with Fibromyalgia, Endometriosis, Allergies, Sensitivities, Asthma, Irritable Bowel Syndrome (IBS), Depression, Chronic Fatigue Syndrome (CFS/ME), Hypo active Thyroid, Restless Legg Syndrome (RLS),  Osteoarthritis (OA) and a host of other issues that are part and partial to go with the above mentioned. The focus here is going to be mainly on Fibromyalgia (hence the title), but will also include fibro-related issues and Endometriosis.

Why, you ask, primarily on Fibromyalgia. Well, cuz Fibro is the most significant issue at the moment.. My endo is under control, as is my asthma, RLS, allergies, etc.. Also, Fibromyalgia is also the least understood, most misdiagnosed and under treated condition that I have. If I can just help one other person, then, I’ll feel awesome cuz I have helped someone. (Why do I suddenly have a girl guide song in my head? *shrug*).

What aspects am I gonna cover? Everything I can. If you look at my categories you will see I plan to cover many areas of traditional and non-traditional medicines including Eastern medical philosophies, faith, as well as non-medical areas of life. I also plan to cover support (financial & emotional) and daily living and coping.

If you have questions, please feel free to ask.I will do my best to answer.

Note that all my content does not necessarily belong to me, however sources are always listed and author if available, if it is not original content. Please see disclaimer post for copyright information.