Upcoming Trip

Last year was my 50th birthday. To celebrate that milestone, my sister & I are going on a road trip. My sister is covering food & accommodation and M&D are covering the flight back & various incidentals.. 

Sisters’ Road Trip!

So, this Thursday, we are leaving in the evening, after rush hour to go through Toronto and around Buffalo for our first leg..Leaving first thing (God help me) the next morning, we are trading off driving duties all the way to Berkley WV..  About 450 miles, just over 700 km..   then to Jacksonville FL the next day, another 600 miles,  about 950 km.  On Sunday, we’ll go to our final destination just south of Orlando.

What am I doing to cope? A few things actually, but firstly, ya gotta know, I really enjoy driving.

1. I have pillows, my blanket & Obus Form backrest in the car with me for comfort. We are also in an SUV, so lots of room.
2. I *can* nap in the car. Last mini road trip was to Ottawa and I slept for 3 of the 4 & change hours.
3. Frequent breaks – Every truck stop, even if it’s just to take a quick walk around the parking lot
4. Lots of fluids. Bringing water & Gatorade. Will be bringing Mio & Koolaid to change up the flavours
5. Snacks. Will have a little bit of everything to nibble on..  Honestly, the same stuff I’d have my cub scouts take on a hike. Protein like nuts & seeds, maybe some hard-boiled eggs premade jerky. Carbs like chex mix, pretzels, cheerios. Sugars: slower ones like dried fruits (premade cuz I can’t make it then bring it across the border) like apples, strawberries, mango or banana and faster ones like M&M’s or Smarties (Another kind of Canadian M&M type candy)
6. Rest at the hotels once we check in at the end of the days.
7. Hot Tubs. At least, I hope. I know the first one doesn’t have one, but the second 2 do. But I dunno when they close for the night or what time we will get to each location. If not, hot showers. 
8. Comfy clothing. I have bought a new pain of lightweight cotton leggings to start my trip down & for my trip back.. Also have comfy shorts & clothing to wear. Absolutely nothing constructive. Also throwing in a spare pair of ok pants it case I need something even more relaxed fit!
9. Will be bringing sleep meds with me to take overnight to help me sleep.
10. Extra meds. I’ll be taking Robax down with me. While as I understand that muscle relaxants in the US require a prescription, I don’t give a flying f.  I’ll also take extra T1s & T3s in addition to the prescription Muscle relaxant as well..   I’ll also have a tube of A535.

In reference to concerns about me driving on these medications. I take Tylenol 3s on a regular basis as well as the Rx muscle relaxant. My body is used to these medications. I do not get a high not am I impaired by them. Only time I *ever* got a reaction from T3s was when I also still had anesthesia in my system and no I did not drive then – lol. You also have to realize, I have functioned on 50mcg/h of Fentanyl, a patch with no detriment including driving.

If any of y’all have further suggestions, I’d love to hear them!

More details of the plan in FL coming. Wish me luck!!

Weight Loss – My Exercise Regime

Please take into consideration that while I do exercise, my functionality & strength levels are much lower than the average person, so while I am participating in these activities, I am not doing so at the level of a “normal” or “healthy” person.

Please also keep in mind that this is not an exact schedule. The only activities that are almost guaranteed are Cub Scouts & walking on Thursdays.  I also frequently do not have much in the way of other activities as to do so would either exhaust me or send me into a flare. Sometimes I get exhausted or flare anyway.

Monday: I try to get to the gym for a walk & weights

Tuesday: Cub Scouts

Wednesday: I try to get to the gym for arriba for cardio, followed by a short walk & weights

Thursday: Walking with my sister and the pups.  If she is not available, I do have another friend or two I can call.

Friday: I try to get to the gym for a walk & weights

Saturday: Usually a social day. No regular exercise scheduled.

Sunday: Recreational soccer.

Additionally, if I cannot sleep & am restless,  I will hop on my Mom’s treadmill and pace out a quarter mile in 5-6 minutes.  This exhausts the muscles which can help me sleep.

My current daily Fitbit step goal is 7000. This is a goal, not a consistent step count. The default that Fitbit sets up the average person at 10k. When I got my Fitbit from my niece, I immediately lowered it to 8k then further to 6k. I upped it about a year ago to 6.5k and just recently to 7k  Yes there are days when I do more, not typically much more and days commonly that I do less.  There have been a few instances of 20k+. But as I said, a few, in two years and I have paid for those days. There are also days where I only do 1k+.

Fibromyalgia & the Heat

It seems I’m in the minority when I say my fibro is better in the hot weather. I will sweat up a storm, but I can function so much better in the summer. Conversely, I can’t tolerate cold well and even require extra medical treatment in the winter months. So these tip aren’t for me, but everyone else! Lol!

Tips for Chronic Pain Sufferers During Hot Weather

1. Drink more water than you think you need to before going out into the heat. Hydration is extremely important. When you become dehydrated, your chronic pain condition can flare, and headaches that occur with dehydration are extremely common. Most of the time, if you feel thirsty, you’ve waited too long to have something to drink. Make sure you have plenty of water with you wherever you are in the summer. Taking small sips on a frequent basis will help mitigate dehydration.
2. Think about where you will sit. Activities in the summer months often involve seating that is not particularly comfortable for the body, such as bleachers at a ball game, picnic tables, or the hard ground at the park. Keep a lightweight, easy to carry, and simple to set up chair in your car so you always have it if you need it. While any seat may be better than standing or sitting on the ground, try to find one that will be comfortable for you so you won’t make conditions, such as back pain, any worse.
3. Spend time where you can stay cool — the water. The happy place for many people with chronic pain during summer is the water. Swimming or even just very easy stretching and movement in the water can be a wonderful respite. Preventing your skin and your body from becoming overheated will go a long way in preventing pain or flare ups. Consider taking cool showers if you do not have access to a pool or other swimming area.
4. Stay inside to avoid extreme heat when you can and take proper precautions. The common advice for avoiding sun damage applies for chronic pain — stay indoors, preferably air conditioned environments, during the hottest parts of the day, seek shade, wear protective but loose fitting clothing, and apply sunscreen regularly. Plan to be outside during the early morning or late evening, and take a handheld fan with you wherever you go for a little bit of cooling power.
5. Keep an eye on air quality. During the summer, it is especially important to pay close attention to air quality ratings before heading outdoors. Evidence has shown that urban air pollution can increase inflammation, particularly for people diagnosed with fibromyalgia, chronic pain syndrome, and multiple sclerosis. If air quality is an issue, it may be best to cancel plans for being outside.
6. Boost your immune system with fresh summer foods. Keeping to an anti-inflammatory diet during the summer should be easy with so many fresh fruits and vegetables available. Enjoy the delicious fresh produce while boosting your body’s reserves of vitamins, minerals, antioxidants, and more. Cherries are a great example of a summer fruit that can have positive effects for those with chronic pain. The USDA found that cherries contain pain-fighting and inflammation-reducing compounds that can help lessen pain, particularly arthritis.

Source for tips: 6 Tips for Chronic Pain Sufferers During Hot Weather

Happy Canada Day

Costochondritis

Costochondritis is the inflammation of the cartilage that joins your ribs to your breastbone aka the sternum.

It is always imperative to get chest pain checked out because pain caused by costochondritis might mimic that of a heart attack or other heart conditions. You don’t want to self misdiagnose yourself with costochondritis when you could actually be having serious heart issues.

Cause:

The cause of costochondritis is unknown but is found in adults, especially women, over 40 and is common for those with fibromyalgia.

Symptoms:

• The pain associated with costochondritis usually occurs on the left side of your breastbone
• The pain is sharp, aching or pressure-like
• The pain affects more than one rib
• The pain can radiate to arms and shoulders similar to a heart attack.
• The pain worsens when taking a deep breath, coughing, sneezing or with any chest wall movement

Treatment:

Home Remedies

• Over-the-counter pain relievers such as nonsteroidal anti-inflammatory medications (NSAIDs) like ibuprofen or naproxen as needed
• Using local heat or ice to relieve pain
• Avoiding unnecessary exercise or activities that make the symptoms worse; avoiding contact sports until there is improvement in symptoms, and then returning to normal activities only as tolerated
• Doing stretching exercises

Medications:

• Prescription-strength NSAIDs.
• A local anesthetic and steroid injection in the area that is tender if normal activities become very painful and the pain doesn’t get better with medicine.
• Narcotics like hydrocodone/ acetaminophen (Norco, Vicodin) or oxycodone/ acetaminophen (Percocet, Roxicet, Tylox) can help with extreme pain, but, as with any narcotics, there’s danger of becoming addicted to them.
• Steroids. Your doctor can give you a corticosteroid shot directly into a painful joint, but that’s considered something of a last resort.
• Tricyclic antidepressants or cyclic antidepressants like amitriptyline can help ease pain, but they also can have side effects, like weight gain and drowsiness.
• Antiseizure drugs, usually gabapentin (Neurontin), are typically used to treat epilepsy, but they also may help with costochondritis.
• Infectious (bacterial or fungal) costochondritis should be treated with IV antibiotics.

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 Matchstick Theory

Originally posted by Sarah Johnson here, it basically replacing the spoons with matches.

I’m sure you’re wondering what the difference is between a spoon and a match. There’s one very big difference. When you light a match and it’s gone, it’s gone. When you use a spoon, you can wash it again and use it again.

The Matchstick Theory.

Imagine waking up each morning with one fresh pack of matches.
Get out of bed? Strike a match.
Watch it burn. Will it burn long enough to make it down the hall to the bathroom? Most Mornings? No. It will not.

Strike another match. Repeat until you are almost out of matches & still need to have dinner or shower. With one match left, what do you do?

It’s a very real difference. I agree with Sarah that it is very much more accurate description, losing a match the burns away vs losing a spoon that you can wash and reuse.

I’ve actually been asked that. “Why don’t you just rewash your spoon?” These are usually the obstinate people or the Karen’s of the world. So this new theory shuts them down to cuz you can’t reuse a match.

May 12, 2023

Happy Birthday to Florence Nightingale.

She died with a mysterious illness with chronic pain, and chronic sheer exhaustion. Sound familiar? It’s believed she had either Fibromyalgia Syndrome.or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. So, today was chosen for the awareness day as it is her birthday.

May 12th is for the Awareness of:

Fibromyalgia Syndrome

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.

Multiple Chemical Sensitivities

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. ♥️