Here we go again ... Flare

[Emmarose47]

Here I am again .....groan
Day number 3 on bed
In some ways doesn't get easier how miserable and lonely it is . On the other hand I'm learning how to be more self kind and knowing it will pass..

Need a shower ...don't have energy .
Making a bit of food downstairs and that it need to be back on bed .

Wake up ,,, anxiety ,,, feel dreadful ...meditate
Up breakfast
Lay on bed guided relaxation ..fall asleep .
Wake up read something .
Heat up lunch
Eat
Lay back on bed
Later afternoon feel a bit better ..
And .....
Repeat

There lasting a week or so at moment and then week or 2 to stabilise ...
Then feel good and do too much which doesn't feel too much ...
Learning around social interaction and going out on mobility scooter to work to find baseline .
When I come out of flare and I have so much adrenaline and energy it's crazy ...
Restraining is v difficult ... I was not laying back down in the morning but I think this didn't help . Need to remember to have some morning rest no matter how alert I feel ...


Symptoms at the mo

Mild tinnitus ( concerning
Body aches esp hands and feet
Temperature fluctuations
Headache
Lymph nodes
Sore throat
Exhaustion
Weird anxiety that only comes with a crash
Feelings of vulnerability and helplessness
Lonely
Low mood

 

[andyguitar]

Learning around social interaction and going out on mobility scooter to work to find baseline .

When you find your baseline you will be able to greatly reduce the chance of crashing. So something positive to look forward to don't you think?

 

[Emmarose47]

When you find your baseline you will be able to greatly reduce the chance of crashing. So something positive to look forward to don't you think?

Thanks Andy yes that is a good thought

 

[Aspen]

Thinking of you! It’s going to feel SO GOOD once you get the hang of controlling your crashes more, so worth restraining ourselves. Have you seen the thread with PEM-busting tips? I’ll link it here in a minute. I took a tip and use Ubiquinol for a few days now during my crashes, it reduces PEM symptoms and helps me feel less helpless. I only need 100-200 mg to make a difference, any more than that and I can’t sleep. And I have to remember I’m still in a crash and to stay in bed for days anyways, even if I feel a little better, since I think the Ubiquinol just masks the symptoms but doesn’t actually speed up the crash cycle.

 

[Aspen]

https://forums.phoenixrising.me/thr...or-prevent-pem-post-exertional-malaise.48438/

 

[Emmarose47]

Thinking of you! It’s going to feel SO GOOD once you get the hang of controlling your crashes more, so worth restraining ourselves. Have you seen the thread with PEM-busting tips? I’ll link it here in a minute. I took a tip and use Ubiquinol for a few days now during my crashes, it reduces PEM symptoms and helps me feel less helpless. I only need 100-200 mg to make a difference, any more than that and I can’t sleep. And I have to remember I’m still in a crash and to stay in bed for days anyways, even if I feel a little better, since I think the Ubiquinol just masks the symptoms but doesn’t actually speed up the crash cycle.

Thanks Aspen ..
I was actually looking at that link earlier ...
I've ordered some branch chain amino acids have u used these ?

I've pretty much got my baseline for physical exersion it's now a new area of social and being out in mobilty scooter

 

[Aspen]

Thanks Aspen ..
I was actually looking at that link earlier ...
I've ordered some branch chain amino acids have u used these ?

I've pretty much got my baseline for physical exersion it's now a new area of social and being out in mobilty scooter

It’s fun that you have your scooter to play with now ... although I’m sorry you are suffering as you figure it out. Social events send me into an adrenaline rush and mini-crash, even zoom calls if there are more than one person on it, so hard to navigate that!

I did buy a high quality branch chain amino acid supplement a few weeks ago, although I’m not taking it right now. I tried the recommended dose the first day I got it (silly me, I should have known to start with less) and I got weird brain symptoms within 15 mins. Vertigo and confusion. So I took 1/3 of the dose for a few days afterwards and felt slightly worse than baseline.... I’ve been having MCAS struggles on and off more lately and I think my feeling worse was due to a different trigger, but I also couldn’t rule out the amino acids as a trigger so I decided to try them again later when I’m more stable.

I’m having good success this week with curcumin and quercetin though- I picked them up recently because I got my first covid19 vaccine on Friday and I heard that they’re good anti-oxidants for such things. I actually should be in a crash right now from something unexpected that happened on Friday afternoon before my vaccine appointment, plus then I had a bad adrenaline rush from going out to the vaccine site (I almost never leave my bed) but I haven’t noticed any crash symptoms at all, I’m right at a medium baseline. The only explanation is these new supplements. The one trouble is that I’m not sleeping as long, so I need to learn a bit more about managing that. Maybe only taking them in the morning. Not sure yet how long I’ll take them, I can’t really afford to pile up on my daily supplements. But always nice to have something in the back pocket in a pinch.

 

[lenora]

Hello @Emmarose47.......I'm sorry that you aren't feeling well (understatement here). You sound like you're in the average crash mode.

I found that something like grocery shopping was way too much for me. Is there any chance you could have them delivered? And ready prepared foods....even already made sandwiches. Just something to get you through the difficult times. It must be especially hard if you're on your own, although I lived that way for many years myself (hubby traveled). That's when I made the connection with the grocery shopping...and I haven't done it since.

Yes, I know how annoying it is to not do something as simple as washing one's own hair. But when you think about it, a lot of effort is involved. Then, we immediately develop bed head on top of it all. Fortunately, mine's getting drier with age, but it would be very hard to take if one were young.

Dry shampoos are good, and I can even use cornstarch (b/c my hair is white). For some reason being in bed makes us feel rather yucky all of the time.

Are you able to use your arms as I gather that your legs are rather compromised at the moment. Perhaps your scooter actually leads you to believe that you're more capable than you are. And I certainly know and want that feeling....but still, there often a price to be paid. Best wishes & do feel better. Yours, Lenora.

 

[Emmarose47]

Hi
Yep I always have my shopping delivered it's great ...
The scooter I use when I'm not in flare to go out in my community . I can do around 1700 steps in my house and garden but over that im in danger of crash hence the scooter .
The scooter doesn't seem an issue but the visual stimulation potentially is .... I get so excited when I'm out I speak to everyone and go to the local park where I know many people .. it's just about me learning my baseline with all of these new areas ..
Bless me

 

[Rufous McKinney]

I used the big massager- I limited it to- literally maybe 3 minutes per leg. I massaged my ankle/foot- and then my calves. Feeling all stagnant inside. Lymph, etc. Can't move around enough, darn.

I was curious if 3 minutes would cause PEM. Yes- it seems to be doing so.

 

[Emmarose47]

Feel utterly miserable today ...
I feel like I've ruined my whole life by decisons I've made ...
48 yrs no partner no children no family around ( family v dysfunctional ) no close close friends ..
I have lots of wider friends so grateful for that ...

Having CFS I look back over my life and there is lots of wish I hads ....maybe this is just part of middle age too ?

I'm in a rented house share ended up with 2 men who don't want to really engage ....
It's a good house though ...peaceful ...good landlady ...

I didn't plan for my life to be this ...

It's like in CFS I've grown up a lot and see I was just out there having fun , I did build a career but the other stuff no ...
I've always moved on from relationships , friends and places ...
I do have opportunities to grow friendships now which is good and I feel I'm getting healthier in my attitude ..

Coming out of flare ....I think .... I'm sure I've had this low before

 

[Aspen]

Feel utterly miserable today ...
I feel like I've ruined my whole life by decisons I've made ...
48 yrs no partner no children no family around ( family v dysfunctional ) no close close friends ..
I have lots of wider friends so grateful for that ...

Having CFS I look back over my life and there is lots of wish I hads ....maybe this is just part of middle age too ?

I'm in a rented house share ended up with 2 men who don't want to really engage ....
It's a good house though ...peaceful ...good landlady ...

I didn't plan for my life to be this ...

It's like in CFS I've grown up a lot and see I was just out there having fun , I did build a career but the other stuff no ...
I've always moved on from relationships , friends and places ...
I do have opportunities to grow friendships now which is good and I feel I'm getting healthier in my attitude ..

Coming out of flare ....I think .... I'm sure I've had this low before

The grief for the ‘wish I hads’ is big, sending you all the courage to wade through it. That grief, and the re-imagining of identity, has taken a massive amount of energy and intention since I got sick too... it’s so easy in life to build your identity on what you do or who you know, rather than who you really are. ME/CFS strips all the extras away and makes us face life raw. Wishing you lots of meaning and hope in the process, and some good company too... I’m glad you’re here!

 

[lenora]

Hello @Emmarose47....and anyone else who needs it.

I'm 74, and I honestly think we all wish that perhaps we had taken the other road at times. It's part of growing older, having the actually ability to make an honest apprarisal of ourselves, finding where we think we went wrong and changing it, or our attitude. One or the other.

We all give up something. Perfection simply doesn't exist...at least for most of us, and I've known plenty of people who have traveled some very difficult roads. The one person I haven't met is the one who thinks he/she did everything right at all times throughout life.

I'm glad that you can have your groceries delivered. Also that your scooter lets you enjoy the larger world. I look forward to hearing that you're feeling stronger at some point. Aspen is right, it does take a lot of energy to go into oneself and slay the dragons we find....but we're better off at the end of it. Yours, Lenora.

 

[Rufous McKinney]

It's like in CFS I've grown up a lot and see I was just out there having fun , I did build a career but the other stuff no ...
I've always moved on from relationships , friends and places ...

Some say an unexamined life is somewhat a waste of having one (clumsy version of a famous quote).

We skip along, on the surface of the lake- forgetting about all the underneath and the below.

It seems there are dragons, still left to slay! and firedrakes- who can fly in and assist us.

Life is about choices, frequently- and giving things up, or deciding to be OK with- the choice that you made at that time.

I'm in a rented house share ended up with 2 men who don't want to really engage ....
It's a good house though ...peaceful ...good landlady ...

There can be something nice about roomates who- aren't always engaging. I generally found living. with friends is more challenging than living with strangers (generally).

 

[lenora]

@Emmarose47....Hello.

I forgot to mention that in order to have and keep people in your life, take an interest in your friends and especially their children. We all grow older, and sometimes we may have a wonderful relationship with the children of people that we never dreamed possible.

Go to the afternoon parties that celebrate their lives, remember their b'days, send e-mails or texts....so many times people discount children and they're so very important to us. Hey, learn to bribe the little ones, they're easy. Chocolate, a new book, it doesn't need to cost much money. Let them choose things like t-shirts online as they grow older, keep up their taste and what's new in their generation. A bit of money's always a big hit, never mind the amount, it's that you have done it. Plus, it makes me feel good, too.

I even watch movies (that I certainly ordinarily wouldn't) in order to stay in the world of my grandchildren...and I tell them about mine. To them 50 years is forever ago....I can remember those same feelings myself. I'm just interested in their world and they stay in close touch with me...if not, they have their phones and are only a reminder away. So children can quickly become close to you...if you let them. Yours, Lenora.

 

[Emmarose47]

Thanks everyone ...
I'd like to reply individually but don't have the energy I'm afraid ...
Flare up continues and Ive really struggled today emotionally ..
The isolation and lack of close people I just don't know how to cope with ..
Also grieving the old me and my old life ..
I was feeling happy on the mobilty scooter and being more social and now the joy I found is darkened by that can take me to flare ..
I know I just need to find my baseline with these but first need to stabilise out of this crash ...

How do we live our lives with this thing ...
Do people find the levels and not crash ?
Can we be content with isolation and restriction ...?

 

[Rufous McKinney]

How do we live our lives with this thing ...
Do people find the levels and not crash ?
Can we be content with isolation and restriction ...?

Its hard, its lousy. We can do it, there is a way. So many face hard, and lousy.

I can sort of go along without crashing very bad at the moment- as I've been freed of external demands- which include I retired, don't have to work, don't have to leave, and don't have a social life per se.

Crashes for me are now often tied to 1)trying to detox but giving up again; 2) eating some wrong thing leading to a digestive incident; 3) doing something more on the one day I feel a bit better.

# 3 is the main thing that happens- I just do a bit more on Feel Better Day. And that day seems to never last long- like one day.

So while I do pacing I likely also flunk it. I told myself to only clean HALF the bathtub- but I did the whole thing the other day, it sure felt good to scrub. Then some PEM ensued.

 

[lenora]

Hello @Emmarose47,

I'm very sorry that you're experiencing another crash. I've been through multiple ones in my life and I've managed to come out of even the most difficult of these. They're frightening and demoralizing though, so don't think you're alone in that thinking.

We can and do struggle emotionally...time helps, only because it gives us the emotional strength to realize that thing can change from even hour to hour. If we're having a particularly good day, it's a cause for rejoicing and we have to put both sides of the illness together.

In all likelihood, you'll once again be using your scooter and having a smile for other people, will be able to talk to them and will feel that you have some joy in life again. It's hard though, I'd be the first to say so.

We can and do learn to be content with what we have. It takes time though and a certain degree of thankfulness no matter what our circumstances are. It's not a perfect answer, I know, probably even not the one you're looking for just as I wasn't so many years ago. I turned my very alone life into working for others....and that gave me something very positive in return. From an early time my life was full of complications, so perhaps I was more readily able to adapt....I don't have an answer for that problem. I just know that I wasn't going to let go of the essential person who was "me."

I wanted other people to know that I wanted to hear about their lives, especially the good part (as so many people are afraid to talk about that part), their ways of dealing with things and always I let them know that they were important to me. I'm still in contact with girls I went to school with 67 or so years ago. If it's of any comfort, their lives haven't been so very great either. Forget what you read about how perfect the lives of other people look....life takes a toll on all of us.

We turn inward, we question our belief system and so many other things....we emerge as different people, more empathetic and tuned into the struggles that all others face, including researchers and doctors. I hum things that comfort me or make me happy, I crave happy memories of loved ones and plenty of laughter....I think that comes more and more as we age. I hope you open your eyes tomorrow and it's a totally different day. That's what often happens. Yours, Lenora.

 

[Rufous McKinney]

How do we live our lives with this thing ...
Do people find the levels and not crash ?
Can we be content with isolation and restriction ...?

I wonder why its easier to chat here than- call a friend on the phone. Something is entirely different energy wise. And since just about NONE of my historic friends want to talk on phones- I just won't be seeing them.

I thought I could at least maybe do some painting. i used to be creative. I hate how hard all that now is. Its occupying my dining table- and guests may be coming (my daugher)- which means I'll need to put it away. So then I will have to confront that I failed- to produce anything meaningful- over these last months.

So its like we keep grieving over continued losses. So we have to- bootstrap. We have to outsmart our own selves.

My daughter coming for another visit is now reminding me further of how much I didn't not do, could not get done, and sort of also reminds me I'm not particularly better.

We just got the laundry from her visit here- last fall- done- last week.

 

[lenora]

Hello @RufousMcKinney....and so you'll look forward to the visits of two of the people you love most in the world.

If necessary, ask her for her help, and listen to her problems in return. So often it's a tit for tat world that we live in. Perhaps you'll have a renewed interest in painting once they leave again....and have your daughter help with the laundry before she goes. We learn. And then we forget, and learn it all again. Yours, Lenora.