How to grieve, self-motivate, track symptoms, hunt triggers, decide & follow thru on treatments

[Auriel]

@JayCS you should be a fibro consultant or something, all that should be in a booklet or just everywhere someone with fibro can read it SUPER USEFUL

 

[JayCS]

what to sit on as my hamstrings are so chronically painful and their couch is so low.

I've asked people beforehand if they have a bar stool for me, otherwise something like a table I can rest on...
Apart from that I make sure I'm able to get down on to, sit on and get up from whatever as comfortably as I can, using all tricks, whether "Alexander technique" or "McGyver" type - preferably without help of others.
On the same note as what you're saying I never hesitate to ask for help or if not possible keep the meeting short.
This year any visits will have to be short if at all, even if round our own place (like today: 2x20').

 

[Auriel]

 

[JayCS]

@JayCS you should be a fibro consultant or something, all that should be in a booklet or just everywhere someone with fibro can read it SUPER USEFUL

Hehe - I wouldn't mind. But it'd take someone professional to convince & help me. Until the cow's come home (and after) - I'm here... (and wherever else I feel welcome).

 

[Badger]

I've asked people beforehand if they have a bar stool for me, otherwise something like a table I can rest on...
Apart from that I make sure I'm able to get down on to, sit on and get up from whatever as comfortably as I can, using all tricks, whether "Alexander technique" or "McGyver" type - preferably without help of others.
On the same note as what you're saying I never hesitate to ask for help or if not possible keep the meeting short.
This year any visits will have to be short if at all, even if round our own place (like today: 2x20').

I get annoyed with myself for not liking to complain, sometimes people can't understand what the problem is, it makes me anxious to go out. You have good advice and keeping visits short has been on my mind. I've been to my friends a couple of times since and experimented with sitting on one or two back cushions. It helps for a couple of hours or so before the pain flairs. Possibly because they are soft cushions and my weight pulls me over them. To be fair they ask if I'm okay, maybe I can get a gel cushion online. Otherwise I'll get up regularly to have a stretch and ask for a different seat.

In my brother's I sit on a single seat which is a better height and firmer. There's usually a fleece cover on it. The mad thing I realized sitting on it is after an hour or so I get awful neck and back pain. It feels like sitting on concrete unless I take the cover off the seat. I confirmed as much trying a cover on my couch at home. Shows how irritable FM is, it's unfortunate that I injured my neck and hamstrings. There's no escaping the discomfort.

 

[JayCS]

I get annoyed with myself for not liking to complain, sometimes people can't understand what the problem is, it makes me anxious to go out.

I totally get this. I take it as a challenge to make them understand. Not just with words, but by doing the strange things I need to to feel OK.

To be fair they ask if I'm okay, maybe I can get a gel cushion online. Otherwise I'll get up regularly to have a stretch and ask for a different seat.

Two really great ideas. To some places I do take a cushion with me (or make one out of one of my hoodies). The longest I was at friends, a few months ago, was 5 hours. After the ordeal of a 1h car trip there (lying twist-stretched), first thing I did was lie down for 30' on the camping mat I'd brought with me. Second thing was to look for a place in the house where I can sit similarly to at home, twist-stretched sitting on the floor on my mat & praps cushions, away from others to de-stress, with my laptop and headphones (for comfort) up on something I can lean against. I then alternated 20-30' with them, 30' break. In between talking with them I had a small focal seizure, and didn't hide it, continued talking. The result my wife told me the next day, was they were impressed how well I was self-caring seeing as how many health problems I have. (My focal seizures seem to impress people, altho they don't scare me. )

In my brother's I sit on a single seat which is a better height and firmer. There's usually a fleece cover on it. The mad thing I realized sitting on it is after an hour or so I get awful neck and back pain. It feels like sitting on concrete unless I take the cover off the seat. I confirmed as much trying a cover on my couch at home. Shows how irritable FM is, it's unfortunate that I injured my neck and hamstrings. There's no escaping the discomfort.

I asked my son if he had a bar stool for me to sit on, so I can twist-stretch sit better when I'm there, so he wanted to buy me one and I sent him the ebay-link to the ones that work for me... (with a hole in the back for my tailbone).
Seems like me you can escape the discomfort by adapting seats and moving more?

 

[Badger]

If I can find something that feels close to the ones at home it would help, although there's discomfort they don't make the pain worse as others do. Neck and hamstrings have been really awkward places to injure. I take heart from your example of making yourself more comfortable and helping to make people understand. There's a difference between complaint and moaning so I shouldn't be afraid to complain and be straight with people. Partly depression and my upbringing I guess. The fear factor is something we can learn to let go off.

 

[Jemima]

If I can find something that feels close to the ones at home it would help, although there's discomfort they don't make the pain worse as others do. Neck and hamstrings have been really awkward places to injure. I take heart from your example of making yourself more comfortable and helping to make people understand. There's a difference between complaint and moaning so I shouldn't be afraid to complain and be straight with people. Partly depression and my upbringing I guess. The fear factor is something we can learn to let go off.

I struggle with that too, Badger. But it is definitely getting easier with practice!

 

[sunkacola]

It does get easier with practice. Because I am a person who never wants to talk about FM unless someone asks me directly and is truly interested, I just do what I need to do for myself when possible, without comment. but when necessary I will just say something like, Can we sit over here so I can use this chair? It would be a lot more comfortable for me." Or, I say, "My body doesn't seem to like this chair - is there another one I could use?", things like that. And then I change the subject so that it doesn't turn into a Thing.

What becomes hard for me is when I do that, but the next day or that afternoon the person seems to have forgotten it, and I have to repeat myself.

 

[sunkacola]

Another thought I have had on "Other People Don't Get It....Don't Understand.......and so on.

None of us ever understands what something really is like for another person because we are not in that body and mind.
This applies to the Other People Who Don't Get It, and it applies to ourselves as well, in that we also do not understand them equally as they don't understand us. It's not a one way street.

There are so many things that I have been so sure of in my life, in terms of who I was, and how I would handle a certain situation or how I thought about something important.
There have been so many of those which have changed completely...done a 180....due to experiences I have had.
Others have done a 180 and then eventually came to a place somewhere in the middle.

Everything we really Know comes from experience. If we have not experienced in in some way, in some form, then we will not be capable of truly understanding it.
This applies most of all to the experiences of others.

I cannot possibly truly understand the priorities and feelings of a refugee fleeing with only the clothes on their back because I have never had to do that. I cannot imagine what losing a leg would be like. So many things. And other people really cannot understand or even imagine what our lives are.

I have stopped even wanting anyone to Understand or Get It. They can't.

Instead, what I strive for in the people I know is for them to believe what I say, understand the things that I am actually able to explain to them such as what helps me and what makes things worse, what I really need for my body and what is less important, and then with the things they cannot possibly truly understand, I wish for their acceptance of me the way I am.

I find that I achieve this best if I do not complain - ever - but instead simply state facts and what the consequences are and what I can or cannot do. So: "I am in a lot of pain right now, but if I can lie down with a heating pad and not have to talk to anyone for a half hour or so I might be able to participate better in what we are doing." or, "I can't do that today after all. I am so sorry, I want to do it, but my body says no and I can't override that without suffering consequences that are out of proportion to the importance of doing this today."

In other words....Just the facts, ma'am.
And I do my very best to be cheerful about it, and if I cannot manage that, then I stay neutral and never whiney or indulging in self-pity because those things are counter productive for people to understand or believe you, and they only make it worse for me, anyway.

So for me, my real goals are my acceptance of me and how things are.
My wish with other people is always that they will accept me as I am.
And my goals in dealing with other people is acceptance of who and how they are no matter what that is.

Acceptance doesn't mean approval or acquiescence. It just means not fighting with what is.

So for people who seriously Don't Get It and do not try, or who refuse to listen to me or believe me, then, my goal is acceptance of the situation, if how they are means I don't spend time with them because it is unhealthy for me.

Hearing a theme here?

 

[Badger]

Well said, just the facts, do what you need to do to keep moving forward. I've always been afraid of complaining but there's no need to be ashamed, far better to be straight with people.

 

[JayCS]

"Pain is not the Enemy. It's like the warning light on your body's dashboard". / "it's like the oil light on your dashboard saying that something needs attention." (The functional doc Jacob Teitelbaum in the 2015 youtube video called "Effective Treatment of Chronic Fatigue & Fibromyalgia" of the 2013 ABIHM conference. at 45'11'')
"CFS... is an illness of people with low self-esteem, who are over-achievers, trying to get approval from somebody that just wasn't gonna give it. Which if you think about it is a recipe for blowing a fuse. If you want to teach them to get well, teach them this one simple word. It's called NO. It's a great word. It's very versatile. It's a complete sentence. There's a t-shirt that says "What part of No didn't you understand?" (at 43'56'')

I'm not saying I think Teitelbaum's perfect, but nice, and his ideas give orientation for supps etc.

(And personally, I needed books by Cloud/Townsend to help me use "No" without feeling bad (biblical examples).)