Archive for June, 2022

Chronic Illness is Exhausting, But Add in a Bug or Two

June 24, 2022

No matter what illness you have, it takes more out of you than the average person. Despite what the doctors say, there is some impairment to the immune system cuz you are always trying to deal with whatever disease or condition you have. When that illness includes chronic pain, it takes you right out.

This is something most people, even those who deal with someone in this position or who have an understanding of these conditions, don’t get.

I had someone generously share his bug with me late in January. Since it was one I’d not encountered before, it hit me like a ton of bricks. With an impaired immunity due to the FM  and CFS, not to mention the Endometriosis (which is considered to impair the immunity in some medical circles), I struggled with this. Now, with me also having IBS-D issues at the same time, it also didn’t help matters.   So I spent almost 2 weeks in bed.

People just don’t get how much worse this is for us.. For example, the aches and pains of a nasty cold, with existing aches and pain & things just get worse..

Of course, just as I was starting to feel better from bug #1, it get hit from the other direction with another bug. With an already impaired system from my medical conditions and an overly exhausted body from fighting the first bug, its no wonder I landed back in bed. Before you say I was still sick, I had different symptoms the second time around including a fever. And remember, I was still having IBS-D problems.

People still don’t get why I was exhausted at this point, sleeping 16- 20 hours a day. If I could heal and repair like normal people, in the same timeframe as normal people, I would be able to sleep less & maybe do some stuff around the house.

So finally, I started to get better from the second bug when *wham* I spend the night praying to the toilet god.. Do you know how much vomiting takes out of a body?

So most of that month was a write off for me. Honestly I’m not surprised.

So if you know someone with chronic health issues, especially multiple issues, don’t expect them to bounce back from regular colds & illnesses like healthy people.

My Mental Status

June 21, 2022

** WARNING: Does contain some personal sexual content or references **

If you actually know me, some of this will probably come as a shock

I’m done. I can’t do this anymore.

  • I have no real friendships anymore, except for maybe Gerry & his partner. Catherine & I dont even talk to anymore, nor does she reach out to me. Her b-day present was for me to take her for a night out, a girls night – that was almost 3 months ago
  • My new friendships are.. well.. I dunno what they are. I just feel I’m being needy with them.
  • My cub pack has become more stress than enjoyment & I am super glad we are done for the summer after tonight. I’m not even sure I want to do even the one event/month we discussed.
  • I have very little interest in the 5 different Kik groups I am in &: administer. I’ve taken a break from Kik since Thursday. We’ll see what happens there
  • My family has no clue what’s going on My walks with my sister tend to revoke around her life both in timing & discussion. My parents seem to have no regard or respect for me as a person. My brother, and his family, is a non-entity in my life.
  • My ‘relationship’ which was a friend who benefits kinda thing, has better communication, granted, but all it seems to be is a fuck at his convenience or a ride to work when he needs one .
  • The D/s ‘relationship’ I have is not really doing anything. All I do is say good morning & good night. What is the point in that?

Honestly? Whats the point?

No. I am not suicidal. I am not planning to hurt myself in any way nor terminate myself. But I just have no joy, no enjoyment and no love my life. Plus no one actually reads this. So really, why bother.

I think I’m just gonna stay by myself. Stay in my apartment and not really do much. I’ll still do walks & soccer with my sister and keep in touch with Gerry. I’ll connect with my new friend Jenn from time to time. But beyond that, there’s nothing. & I really don’t care, cuz I’m done.

Cub Camp – The Aftermath

June 17, 2022

So I did do cub camp I wasn’t feeling great, but I ended up doing it. The kids had a blast I’m still recovering.

So, as you can see, it was a very physical weekend. Both Jenn & Wendy are runners & Cecile is one of my other Cub leaders. And I out paced them all. I I am still recovering.

I am hurting I am reeling. I have been physically sick. I am exhausted. I am mentally unwell. I don’t know if I can do this again. I don’t even know if I can camp at all again.

I dont know if I want to.

Cub Camp with Fibro – First camp after COVID

June 10, 2022

This weekend is Cuboree, which is our first in person overnight camp since February 2020. This means most of our kids have never camped in-person as a Cub. Of 21 youth, we have 2 who have.

Normally each group would be running independently with their own food and kitchen and supplies and such. Fortunately the Cuboree Committee decided to offer a meal plan The Scouters who are in the participating groups have planned the menu, supplies, equipment & food. The kitchen is being organized & run by council level Scouters who have no group . From us, they only require one Scouter from our group to help with food prep. Not me! Yay!

Normally for camp we would plan the menu, organize our equipment, shop for food and supplies as well as having food preparation done with the youth. We have, fortunately, none of that this year. We’ve been flying by the seat of our pants this year’s so I just gotta say Thank God The most prevalent leaders both have Fibromyalgia & the related cognitive issues so it’s been an interesting year.

& its supposed to rain on Saturday. *Sigh*

my apologies if this doesn’t make sence cuz it’s a busy week & my brain is now fried & I still gotta run the camp!

Treatment – Fat vs Thin

June 7, 2022

Walking with my sister last week she asked me if I had noticed if I get treated differently now, with shrinking. I thought about it for a minute and in some ways, yes, some ways no..

I no longer get dirty looks from people because of my weight.. People tend to be friendlier and less judgemental.. People are more likely to smile back when I smile. I don’t get dirty looks when I treat myself to an edible treat or I go through drive thru for dinner. I haven’t heard a rude comment spoken behind my back but in earshot for a long time. In general there seems to be less discrimination..

That being said, I have gotten dirty looks from some plus size women. I don’t know if they notice the extra skin and ate jealous or my weight-loss success. I don’t know if they recognize the BBW attitude I still have even tho I now wear a size large. I don’t know if it’s the self confidence I have in myself.

One area I’ve noticed that hasn’t changed much is guys. I still catch get the attention of guys who are ‘into’ BBWs.. I now do get the attention of guys who like ‘regular’ sized girls as well .. Either way tho, they still, for the most part, are all still looking for the same thing. Casual is not on my radar, never really has been. Maybe it was my size before & my age now. I don’t know why they think I am easy pickin’s.

This is the last of my weight-loss victories series

How Is Fibro Reliable

June 3, 2022

The are only two reliable things about Fibromyalgia and chronic pain in general

  1. Our bodies are pretty much always in pain. All day, every day we are in pain to some extent. I don’t think I’ve had a pain-free day, other than heavily medicated, in at least 2 decades.
  2. Our bodies are reliably unreliable in regards to this disease. Consistently inconsistent.

Pain Levels Change

These change, frequently. They ebb & flow.. We can from a 2/10 one day, but the next a 5,/10, then a 3 then a 6,.. Even worse, they can shift hour by hour, especially when it bounces. Goes 5 to 6 to 5 to 6 to 5 to 4 and to screw me up, back up through 5 to 6 again.. Some of our pain is predictable by pattern like weather changes & over exertion, but not even necessarily then..

Now, jumping at lower levels like 1, 2, 3, or even 4 aren’t so bad.. but bouncing at the higher levels is alot harder on the body .

Duration Changes

The shifts in our pain levels can bounce from hour to hour.. They can be sustained for a period of time. Sometimes hours, days, even weeks.. I’ve even stayed steady at a 3 level pain level steady for months at a time. And I have seen no way to predict how long it will last I’ve had the same thing cause a shift and each time the shift (be it up or down) has lasted different lengths of time.

Frequency Changes

Our pain levels, as you can tell from comments above can last a different length of time each time. Sometimes minutes (but that’s usually an outside source!), Hours, days, weeks & as mentioned even months.

Triggers Change

I’ve noticed that sometimes I will get triggered by an activity one time, but not the next. On the reverse, something else that doesn’t normally trigger me will. Inconsistency. Shifts in the weather are a good example. We recently shifted to rain at the end of last week and I got hit hard for a bit, up to a 6, but slowly was able to manage it back down. But the inverse, the week prior we got hit with a similar shift to rain, but there was very little impact to my body.

Timing Changes.

When our pain will change is in no way predictable. Since childhood, I’ve had a tendancy to be better or healthier in the evenings. It’s to do with my circadian rhythms, I think but everyone has that Other than that, time of day has very little impact. There are days where I will suddenly wake in excruciating pain because of the pain. There are days where I will wake naturally & when I make that first move, Whammo! There are days when suddenly, mid-day, pain shoots up. There are days where I woke well and by the time dinner rolls around, I already want to curl up and ignore the world to deal with how bad I feel.

A Side Note – Third Consistency.

In writing this entry I keep noticing that the reference to changes emphasized to the increase. That’s probably because the increase is bad. But I also noticed that I’ve never had the thought, as I’m writing & editing about sharp drops in pain.

  1. Pain can rise quickly, but without intervention, it always drops slowly