Flaring! Flaring bad!

Yesterday was the perfect storm. Everything conspired against me.

1. Poor Sleep. According to my fitbit, for the last several weeks, I’ve been getting usually between 4 & 6 hours of sleep a night, average rating poor-fair. There’s the occasional longer, better sleep in there, but not often..
2. Forgotten Medication. When I left for the cottage early this morning, I forgot all my meds at home. Admittedly I didn’t need them all today, but there are certain ones that I do have to take at certain times for them to be effective. Unfortunately, those got left at home. I did have limited or weaker alternatives which I suppose is better than nothing.
3. Emotional Stress. I am currently having problems with my current relationship. I’m not sure if it’s something I can handle and accept or not, so there’s alot going on there..
4. Poor Diet. Due to the aforementioned stress, I haven’t been eating.. I haven’t been eating well & I haven’t been eating much. Neither is good, both is worse.
5. Activity. Spent the day in bed.. with my boyfriend, not sleeping. While this is usually a good thing, due to stress, I was unable to truely relax and enjoy it. So I was getting the workout without all the longer term benefits
6. Physical Stress. After I’d started going down hill, I had a horrible drive home. What would normally be a nice relaxing 1½ hour drive home from the cottage turned into a 3+hour nightmare. Between accidents causing an entire highway to shut down for over 14hrs, excessive detours, multiple accidents on said detours, snow.. The body begins to tense up more & more & more.. and with me being in the car I wasn’t able to like stretch or anything creating more physical stress

For the first time in over 3 years, my pain turned to a solid 8/10.

After 2+ hours, 4 Tylenol3, 4 muscle relaxers, an anti-inflammatory, my CBD oil, prescription edibles, and a backrub with A535.. the edge started to come off, but I also started feeling the effects of over medication too..

I just can’t win..

What Does a Disability Look Like?

According to the World Health Organization, disability has three components:

1. Impairment in a person’s body structure or function, either physical or mental. Examples include loss of a limb, loss of vision or memory loss.
2. Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.
3. Participation restrictions to normal daily activities. Examples include working, and engaging in social & recreational activities,

So as you can see, not all persons with disability have necessarily have a physical component. Additionally, there are medical conditions and disabilities that are not visible including diabetes, lupus & fibromyalgia.

I’m a good example of that in that I have fibromyalgia and other issues but I don’t use a cane at the moment. As a result, I don’t look like I have an impairment . Pain is invisible so they don’t know and cannot tell that my pain level is a 1/10 (I know, very funny) or 8/10 today.

Remission! What is it?

What does this look like? Honestly, it’s not that different. Most people who have chronic illnesses only go out when they are having good day.. In remission, you are having primarily good days.. So, the big change is that people will see more of that person. Instead of once every 2-3 weeks, depending on your relationship, you might see them 2-3 times in a week!

What does it look like for me? It looks like better connections with family & friends as I can see and interact with them more.. It looks like consistent cubs meetings with a higher participation. It looks like I can do something from before but without the bad consequences like I was able to go for a hike down by the lake today and tomorrow I may be a little sore, instead of a nice big crash that used to happen.

Remission means a temporary relief from pain, fatigue & other dymptoms. I can do so much more than I could!

Do I still crash? Absolutely.. Does it happen as much right now? No. Is it as bad, as painful, right now? No, actually the pain is better right now. Does it last as long? Not usually.

So, I’m sure you are wondering, can I return to ‘normal’ life? No.. I’m still having off days. I still can & do overdo it. I crashed out one day last week for no particular reason. Today I am toast cuz of the weather shift earlier in the week. I having been slowly adding more ‘normal’ things to my life including friendships, romantic relationships, scouting commitments, family interactions, increased activity including exercise.

Am I still in pain? Am I symptomatic? Sbsolutely. That one reason I know I’m not ‘cured’ I still have pain evety single day. But lately it’s only a 2 or 3 on the pain scale these days.. I still am exhausted, but I don’t necessarily need the 12+ hours of sleep to recover from a regular day. IBS? Oh yeah., Fibro Fog? Definately.. Sensitivities? Sure, some less intense.. Morning stiffness? Oh yeah, but it’s usually less..

Why am I in remission? What did I do? I can’t say for sure, but the timing of the end of a toxic even abusive long-term relationship may have something to do with it. I returned home, slowly rebuilt relationships, re-establishing connections, increased fitness, weight loss, changed my meds & got off several, decreased dosages of others.. Lots of good changes, all of which may have contributed to my current status.

Will this last? I wish, but I doubt it.

Not All Disabilities Are Visible

Not All Disabilities Are Visible
By Kate Mitchell, May 3, 2016

Original Post: Huffington Post

Too often recently, friends or online acquaintances of mine have been accused of faking their disability. I personally am also disabled. I have autoimmune arthritis, fibromyalgia, anemia of chronic inflammation, and asthma. I’ve been in pain every day since 2001, and over the past 6 years, it has become moderate to severe every day. I experience pain in 54 joints. I am unable to work full-time or go to school full-time at the moment. I take 40 pills a day and 4 inhalers. I’m at the doctor every single week. I’ve had 5 surgeries. But you would never know any of this by just looking at a picture of me. And I’m not alone, as the vast majority of people who have disabilities have invisible ones. But because the majority of people have the idea that everyone who is disabled looks disabled, too many treat disabled people poorly. They shame them, don’t allow them to park in certain places, don’t allow them to use a wheelchair, and more. This is so beyond not okay, and it stems from the misconception that everyone who is disabled looks disabled.

What makes someone disabled? The definition of disabled is “incapacitated by illness or injury” or “physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education.” As I learned while studying for my degree in secondary education, someone is handicapped if their incapacitation is temporary and disabled if it is permanent. For example, someone who has had ankle surgery is handicapped until they recover. If you’d like to read more about this, Emory University School of Medicine has a great explanation.

Everyone who is disabled looks disabled, right? Nope! As the folks at Invisible Illness Awareness Week figured out based on data from the 2002 US Census Bureau, 96 percent of people who live with an illness live with an invisible one, and 73 percent of people who live with a severe disability do not use devices like a wheelchair. This means that when you look at them, you wouldn’t know that they’re disabled. Think about how many people you see who are clearly disabled during an average week. Statistically, for every person you’ve seen who looks disabled, you’ve seen at least 4 more who are disabled but don’t look it.

So how can you tell if someone is disabled? Often, you can’t, so if someone says that they are, you need to take them at their word. If someone looks fine but parks in disabled parking — and have a placard for it — you can’t accuse them of faking it. If someone looks fine but wants or needs a wheelchair, don’t question it.

At the same time, we do need to make sure that people who don’t have disabled parking don’t park in those spots. They also can’t park there with their blinkers on while they wait for someone. If you believe that you should be able to park there because of a health issue, talk to your doctor. If your doctor disagrees with you, don’t park there. If your doctor agrees with you, you still need to wait until you get your placard in the mail before you park there. Anyone who parks in the disabled parking spots without a placard of plate is breaking the law.

What can you do about that? If you see someone park in the disabled parking spot without a placard, call them out on it or write down their license plate and contact the police. People parking in those spots without a placard are breaking the law pure and simple. The more they get away with it, the more they will do it. Oh, and doing this can prevent someone who needs it from going somewhere and doing something they can’t do without the parking. However, before bringing it up with someone, double check to see if they have a placard and you just can’t see it. Verbally attacking someone because you don’t think they’re disabled makes their life already harder than it needs to be.

FM/CFS – What Do You Miss the Most?

FM/CFS – What Do You Miss the Most?
By Adrienne Dellwo

It’s the rare person with fibromyalgia or chronic fatigue syndrome who hasn’t had to give up some activity. Whether it’s something little (like an occasional hobby), or something major (like a career), we’ve all made those sacrifices.

I’ve had to give up some things because I simply can’t do them anymore, and other things because of the toll they take on my health and functionality (and some for a combination of both reasons.) I’ve given up my TV news career, my gym workouts (a weight circuit plus 45 minutes on the treadmill? Are you joking?), occasional hiking trips, major home improvement projects, etc. Fortunately, I’ve been able to gain back long walks (on good days), gardening, a social life, and enough of my brain to write a few blogs and articles every week.

Some things, though, I still don’t have back. While I hope they’ll someday be part of my life again, there’s no guarantee. I have to say, I really miss long days of shopping. I used to spend hours wandering through shops, being inspired by things I saw and just enjoying the whole experience. I also have to admit I really miss being able to eat whatever I wanted. I was recently diagnosed as gluten-intolerant (not Celiac, though), and I’m especially missing “convenience” foods — have you ever noticed how much of what Americans eat comes breaded, on some form of bread, or wrapped in a tortilla? Earlier today I broke down and ate a single chocolate chip cookie, and now I have pain in my esophagus and intestines.

On the emotional side, I miss the feeling of freedom. I used to feel free to pursue whatever hobby, vocation, interest, etc. I wanted to pursue. Now, I have limits. I miss the benefits of the higher income I could have if I were healthy. Some opportunities are no longer available to me. I resent the limitations within which I have to live.

I try to keep in mind that a lot of people have had to give up much more than I have because of these illnesses, but at some moments I just have to get angry or frustrated about it. We all have to vent now and then to keep from exploding, right?

What activity do you miss most? Is it something you think you’ll be able to “reclaim” eventually? What feelings, attitudes or assumptions about life do you miss most? Vent your feelings about it here, by leaving a comment below!

Source:Fibromyalgia & CFS Blog, About.com Guide to Fibromyalgia & CFS

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I miss Amusement parks & Camping the most..
I miss the friendships I used to have where health wasn’t a factor.

Good Day

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.