Letting people know I'm ill

[Rufous McKinney]

Would your neighbor have said such a thing to that person?...not on your life!

We also just simply need to realize that all of us are- human, fallible, at times we think or say things without thinking it through thoroughly. We let other peoples clumsy remarks get to us and maybe its just not that big a deal.

yes, just the other day I read about the cancer person who has virtually no problem and no symptoms. Whatever the cancer is doing- its not creating any noticeable inconvenience. Also AIDS has been discussed here as well- the AIDs person leading a reasonably healthy life while having this difficult thing. My daughter has a friend with AIDs and she is on medication and she is- out till 2 am every night. She "looks fine". She behaves fine. I behave sick.

Maybe one issue is simply we are too quiet about it. We just keep it to ourselves.

thats what I am struggling with- Cancer and Aids was all about Awareness. ME is all about Awareness, but as a victim, we hide.

 

[lenora]

Rufous....Hello. Yes, we need to be more outspoken, I couldn't agree more. Here's the history of why we weren't in the early days.

AIDS was being felt across America. A new disease, finally found to be attacking the immune system, people were dying and there was a feeling of not wanting to hear more bad news across the country. AIDS was costing a fortune in Research (and they deserved it). The last thing the country wanted to hear was another immune system problem....there was no money allocated for us, plus the fact that it was new (or thought to be), and we were derided horribly. We tried over the years to make so many illnesses know, but with this one it was a failure. To be honest, it makes me mad....but we've been kicked around for a long time. That's the only good thing with COVID & Companions. I don't wish for more people to join us, but it appears that it will happen. Then, I believe public opinion will finally change.

Grab what we can then. Books have been written, films made by 3 different people, Jen Brea's probably the best known, but others are also good...Names? We need them, b/c I forget them. Yes, many people with killer diseases are feeling fine in between bouts of the illness. Some even have energy back. It's time for us. No doubt. Yours, Lenora.

 

[lenora]

Well, after suffering with this and plenty of other illnesses or "Syndromes" I tend to take people at their word when they say things aren't OK with their health, or they're suffering pain.

Even a smoker (and I've never been one, either) deserves our support and being asked how it's going. Addiction, I know from personal experience, (brothers & sisters) is hard to kick, very hard. It can kill, and/or cause other diseases that do. So, I'll support a smoker in his/her non-smoking objective. I would also expect that I be respected and their smoking is done outside the house. I have a friend who quit for 7 years, and went back to it about 2 years ago. Older people have a very hard time with this habit. It's frustrating to see the young smoke b/c they had the information about the illnesses it causes. There are degrees and degrees of pain...personally, I view myself compared with a torture victim. I have no idea, can't even comprehend the degree of pain that person feels. Thus, I tend to believe all people (just don't take advantage of me). Some tend to overstate and others are the opposite. Must be hard for pain specialists. Take good care. Yours, Lenora

 

[keepswimming]

I got such a strange look from her, and she said almost under her breath, "well you look fine to me."

I cried when I came home. Sad for the old days.

How awful @Wolfcub ! I would have cried too. That is so, so hurtful. If only people knew the guilt we experience when we have to say no - the last thing we need is comments that make it feel worse.

Recently, to help a friend, I was doing something that was really beyond my capabilities. It exhausted me every time. And then the person I was doing it for, told me what I was doing wasn't enough, and could I do more/longer.

To be fair, when I explained about my health she was fine. But I sobbed afterwards, it made me feel like what I could do was worthless. I had to explain to her that actually what I was doing was too much, there's no way I could do more. She ended up asking someone else to help her instead, which was a good thing as I wasn't coping...

Actually she was quite nice about it when I explained, when people show they don't even believe what you're saying it's so much worse! But even so, those words just made me feel so worthless, that even when I was doing beyond my best, it wasn't enough.

That's when you chirp cheerfully: "That's because I avoided doing anything strenuous yesterday!"

... or: "Well, you should see me the day after I do something like that. Except that it doesn't have obvious physical signs such as blood shooting out of my ears. If other people could feel what PEM is like, they would be properly horrified."

Good suggestions. I think often in the moment when something like that happens, you can't think of a reply fast enough! Good idea to have some kind of sentence in mind if something like that comes up...

 

[keepswimming]

We also just simply need to realize that all of us are- human, fallible, at times we think or say things without thinking it through thoroughly. We let other peoples clumsy remarks get to us and maybe its just not that big a deal.

True. On Monday I was doing a video call with three friends. I wasn't having a good day. I felt I had three options. 1. I could fake being well, and make myself more ill in the long run 2. I could cancel 3. I could join for a short time and not contribute much. I decided to try the third option, especially as I am trying to be more open now - why shouldn't I tell people I'm having a bad day?

So when I joined I said, "I won't be doing much talking today, I will just listen". One of my friends just looked puzzled and said "oh." I said, "I'm not having a good day." She just... looked. It really upset me.

However afterwards she sent me such a lovely message. She said she's so sad for me that I'm unwell and sad about how much my life has changed, and how much she admires me for the way I'm coping with it.

So, looking back, I think the "oh" and the look was just confusion, and an initial not knowing what to say - probably because normally I've just been hiding away on the bad days, so she wasn't expecting it.

And although that initial reaction upset me, I get it, and I'm happy with the decision I made because I think it's increased her understanding, and I believe next time whether it's me or someone else, she would react better.

 

[lenora]

Keepswimming....You certainly sound like you have the right attitude about things. Good for you. Forgiveness is also a part of having this illness. As hard as it may be at times, if we explain our circumstances to people, they'll understand and perhaps we'll both have gained something. That was so nice of your friend to send you the message. The movie UNREST puts it in perspective, and there are two other excellent ones, but I always forget their names...one is especially good. But UNREST is the one that gives people an idea of the magnitude of this illness.

I'm going to be adding a list of movies that we've either seen or are going to see, some on Netflix but most on Amazon Prime, or other channels accessed via Prime. There aren't many comedies, sadly, and the ones I have listed are through Starz, meaning a rental fee of $2.99 (they're older movies, but funny). If you have anything to add, kindly do so. As the holidays approach I know many of us will be alone and a movie helps fill the void...I just wish there were more of the belly laugh types. I'll be listing some we've either seen or will see on "Chatting with Lenora" under Emotional Supprort (I think), so if you have any to add, please feel free to. Take good care of yourself. Yours, Lenora.