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

Non-Scale Victories!

May 24, 2022

This is part of a series of various Non-Scale Victories. They are things I’ve noticed over the last few years as I’ve lost weight.

My Shape

I mean, obviously my shape had changed cuz there’s less of me, but specifically, my abdomen… I was laying on my back the other day & looked down. For the first time I can remember, I saw my ribcage, but nothing below that. I’m used to seeing a mound of tummy sitting there, but no more. In fact, the abdominal area is actually concave!

Bones

Yes, I have them! I can feel them!

As you get bigger there’s more & more fat in the way so it gets difficult, feeling your bones. In fact, at my biggest, the nurses had problems, because the pelvic bones were difficult to make out, it was difficult for them to mark out my body to give me any any shots in my bum.

Most people can easily and definitively find there basic bones hip & pelvis, clavical (breastbone), clavical &:rubs and to a lesser extent, knee caps. For the longest time, for me they weren’t defined & easy to find.. As I’ve lost weight they’ve been easier to distinguish. I can now actually feel my kneecaps and find where the patella sits so I can adjust it to where they should be! And I can get my fingers under my sternum, enough to hold it from both sides. I don’t remember ever able to do that before, but I guess it’s possible now cuz of the loose skin

I dont know how that helps anything except marking my tush for shots there, but it is something that has changed as I’ve lost weight .

Being Alone Sucks

May 20, 2022

I was in a 10 year, give or take, relationship that turned into hell. I left 6 years ago this month..

I moved back to Oshawa. I lost a bunch of weight, I’ve gotten healthier (yes, I still have 6 million medical issues), I’ve reconnected (or thought I had) with old friends, I’ve had two ‘relationships that haven’t really been much more that glorified Friends with Benefits.

So physically, I’m better off but emotionally.. I still feel like shit.

I want to have someone in my life, Someone who is mine. Someone who I can call when I’m having a crappy day & we can talk.. Someone who wants to just hang out, talk & cuddle.. Someone who, honestly, I can say ‘Wanna f**k?’ to who won’t turn me down flat cuz it’s inconvenient for him.

I want something real – not this crap I’m finding over the internet. They are compatible 100% in one aspect but a complete no go in another areas.. Or I find someone who is match in that area & falls significantly short in another area.

I want someone who wants me for me, warts & all. Who matches intellectually, emotionally, physically, sexually on a compatible maturity level.. Is that really too hard to ask for?

Non-Scale Victories

May 17, 2022

This is part of a series of various Non-Scale Victories. They are things I’ve noticed over the last few years as I’ve lost weight. I will be closing this off this series in two weeks with an overlapping topic of a similar vein.

I’m Itchy.

This kinda goes back to the flexibility thing, but on the weekend I was in the hot tubs, and I have no clue why, but my back got itchy, like really itchy Not the kind you can ignore. And with its positioning it’s on of those spots where I’ve always had to grab the back scratcher & if I’m lucky, reach it

I know I’m a little smaller than the last time I had this itch so I reached around behind hoping that maybe I could get the bottom of the itchy spot with my thumb just hoping to take a little of the edge off. Well, I was able to do that & then some. I also to turn my hand onto my back & scratch the whole area!

So I reached the other arm Inver my arm & tried to grab the other hand . And guess what!!! I couldn’t do it.. lol. But I think that when I push the bottom arm up & push the top arm down, I might be able to touch my fingers. Since both my arms would be behind my back I have not arms to push on my arms.. hehe.. so it’s just my theory.. ­čÖé

May 12th

May 12, 2022

Today is May 12th..

Awareness Ribbons

On this day we try to spread awareness of three debilitating and chronic medical conditions. I have all three of these conditions & I have to say, they all suck.

FMS – Fibromyalgia Syndrome

CFS/ME – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

MCS – Multiple Chemical Sensitivities