Chronic Illness and the Holidays

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Excellent advice, Malia! (Especially that last part. :p) Everyone has something going on. Those who deny it are lying to you, themselves, or both.
 
We had a snowstorm today, so nobody is going anywhere and I get to just stay home and not worry about the party! 🙂
 
Didi said:
We had a snowstorm today, so nobody is going anywhere and I get to just stay home and not worry about the party! 🙂
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Divine intervention?😉

Enjoy your evening… I’m off to bed (yes, it’s only 7:30pm…but those are some of the effects of being chronically ill AND having a 2 year old with sleep issues:shrug:)
 
Didi;:
For those of you reading this who do not suffer yourself with chronic illness, but know of someone who does, please do not be offended when they turn down your invitations, or when they try to come but at the last minute are unable to. It really is not personal at all, but just what we have to do to cope on a daily basis and not overdo.
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I don’t have a chronic illness but I’m the one who often ends up trying to explain to people who are upset that a friend had turned an invitation that it is likely/is because it would push them beyond their ability to cope.

Suppose I have taken on this role because I suffer from sensory overload and so understand better than most the difficulties that those with chronic illness can have with social events - especially those that have periods of remission or appear not to suffer from any illness as they may not any exterior sign of their illness.

Maybe we should give those who find it hard to understand why some people have to turn down invitations they would love to be able to accept a reference to this thread. Then they would be able to read for themselves the pain that people suffer both with their illness and for not being able to accept invitations.

Didi, Feanaro’s Wife, Trishie, nana3, crohnie4life and Littledeb (if I’ve missed anyone with chronic illness whose posted, consider yourself included and my apologies for missing you out) you are wonderful people and in inspiration to the rest of us.
 
I labor under no where near the level of difficulty that many here endure, but I honestly don’t know how I am going to make it through Lent and Easter until CCD and RCIA end. would love to have year-round programs, but simply cannot do it.

am supposed to have adjustment of arthritis and asthma meds (wind recently has been fiearce and asthma is in high gear, arthritis is all but crippling me). but that will wait until full cardiac workup after Christmas. CCD is over until January, although I still have to work it will be catch up, organizing, paperwork etc. Also will TRY to get our personal tax records together.

what I have learned, and I guess I needed the lesson, is that not only CAN’T I do it all, I am wrong to even try. the more infirm, disabled, befuddled, slow, forgetful I become, the more I rely on others, the more people come forward to help, and the more gifts they bring to this work.

I had been lamenting I could not provide the retreat experience I wish for our youth, wanted to do something with prayer stations. new youth group leadership, with help from 2 other parish organizations, planned and staged the most fantastic youth retreat I have ever seen, with prayer stations that led children through the entire liturgical season of Advent and Christmas in a deep encounter with scripture. took 2 hours to set up, another to clean up, 6 hour experience, including Mass and confession, the best retreat youth have every had in this parish since my tenure. And all because I was not able to do it and asked for help.

I am just in awe of what they accomlished, and the feedback I am getting from the kids.

I am also focusing attention on preparing others to assume responsibility for aspects of the job itself, and the ministry aspects attached–training assistant to take over office and paperwork and admin chores, building RCIA team, getting team together for sacramental meetings, training session coordinators, and most of all catechist formation, so that if I drop dead tomorrow, everything will tick along well w/o me. Nobody is essential save Jesus himself.
 
Oh, puzzleannie, I can so relate. I too struggle with, first, admitting I can’t do it, and then asking for help. It has gotten a lot easier than it used to be, but it’s still not easy for me.

I still struggle with saying no sometimes, too, when I’m asked to help with something. I usually say “I’ll try, depending on how I feel” and those who know me understand.

I’ve had so many people comment with “You don’t look sick” or sometimes people will tell me I look really good when I’m having a really bad day. You sure can’t judge a book by its cover.
 
Didi said:
I’ve had so many people comment with “You don’t look sick” or sometimes people will tell me I look really good when I’m having a really bad day. You sure can’t judge a book by its cover.
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**That has to be the worst… really, how are we supposed to respond?

US: I feel awful, I’m sorry I’m going to have to cut our visit short

THEM: but you look fine!

US: oh, I do? Well, I must be ok then…I’ll stay:confused:

Honestly I don’t hold “them” responsible…it is very hard to understand an invisible illness. Even people who know me well sometimes forget how serious it can be. Then we are put in the awful predicament of either letting people forget how ill we are or “whining” about it to remind them. Both options suck:rolleyes:

I really don’t know where I’d be without my faith. It keeps me going, gives me something bigger than myself to focus on, and holds me up when I just can’t do it anymore. I have been “faithless”…and I don’t think I would have survived much longer without it.

**
 
Originally Posted by Didi:
I’ve had so many people comment with “You don’t look sick” or sometimes people will tell me I look really good when I’m having a really bad day. You sure can’t judge a book by its cover.
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Feanaro's Wife in reply to Did:
That has to be the worst… really, how are we supposed to respond?
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Yes, it is very difficult for people who are feeling lousy, especially as the result of chronic illness, but look very well. For example, they may have a good colour, clear eyes and a clear skin maybe as a result of the medication they have to take.

My mother (now deceased) often used to get very little sympathy when she was feeling lousy as that was often when her colour was best. It was an minor annoyance for her but it would be a major irritation (or worse) one for someone to whom it was always happening.

Maybe over the holidays we can help people in this situation by watching what we say and make sure we don’t accidently say anything that implies that they are mistaken about how they feel. Especially avoiding “but you can’t be ill, you look so healthy”.
 
I have a friend with MS who deals with the same issue of not always looking “sick.” I’ve also had people tell me when I’m having a half-way decent day that I look really tired or I don’t look well.

We laugh, though, and say at least people aren’t telling us, “Gee, I hope you feel better than you look!” (Not yet, anyway!)
 
OK, I can relate to everything I am reading here. I am 32 years old, but a few years ago, in my late twenties, I suffered from Irritable Bowel Syndrome. If I got the least bit nervous, I had to run to the bathroom in excrutiating pain. I have social anxiety, so when I had to be in social settings the IBS would get really bad. There were times when I would have to cancel my plans because I could not leave the house because of the IBS. I was not comfortable telling people that I suffered from IBS because it just seemed so gross to me. There were several friends who were mad when I was not able to sing in their wedding or attend their baby shower. They purposely questioned me, “Why were you not at my baby shower?” When I told them, in secret, that I had severe stomach problems, it was like they did not think that was a good enough excuse.

Personally, I can not imagine calling someone and asking them, “Why were you not at my party?” I would never expect every single person on my invitation list to show up. If I asked some one to sing at my wedding and I could sense that they did not want to, I can not imagine making them feel bad for it. My experience has taught me to not expect so much from those in my life, because you never know what may be going on in their private lives.

For those suffering with IBS (the nervous stomach/diarrhea kind), I highly suggest guided meditation and probiotics. It’s been two years since IBS has kept me from living and I thank God and the guy that owns the organic foodstore in town for this healing!
 
As a person who suffers w/Crohn’s disease, I use to get asked “why weren’t you at such and such or you don’t LOOK sick” or told by an ex boss who wrote me up while I was in the hospital (I use to work there in the Ob/Gyn Dept.) w/a severe DVT that I was missing too many sick days & looked ill all the time. She made my life a living nightmare.

It is difficult living w/an illness that can’t be seen. Yet, those of us who have it still take it one day at a time and do the best we can. I applaud everyone who can do what they have to in order to manage a household, kids, husband, and pets or those who are single and have to work.

I just wish certain people who have no clue of what we go through to walk in our shoes for a week to see what we have to deal with. I bet they wouldn’t last a day.

My wish for everyone here is that they go into remission for a very long time. Holiday blessings to all. 🙂
 
crohnie4life said:
I was missing too many sick days & looked ill all the time. She made my life a living nightmare.

And all it would take is a little compassion and even politeness. I have never been able to work full time and have always ended up having to quit, be fired, or be treated so horribly that I left. I understand that a boss can’t make exceptions for an ill employee…they have a business to run. I get it. But how about just saying that…instead of being mean or making people’s lives a living hell?😦

I just wish certain people who have no clue of what we go through to walk in our shoes for a week to see what we have to deal with. I bet they wouldn’t last a day.
**
I was searching for a new family doc while pregnant with Lily. I was in the office when the lady doctor walked in, asked me several questions and then proceeded to tell me that she didn’t “believe in” fibromyalgia and that I was a drain on society and I needed to get a job.:eek::crying:…not that I would ever wish illness on anyone, not even people like her, I do wish she could somehow gain an understanding of what it’s like to not be healthy and that it’s not laziness or a choice.**

My wish for everyone here is that they go into remission for a very long time. Holiday blessings to all. 🙂
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That is my wish too:thumbsup:
 
Originally Posted by crohnie4life:
I was missing too many sick days & looked ill all the time. She made my life a living nightmare.

Reply by Feanaro’s Wife -That is my wish too. And all it would take is a little compassion and even politeness. I have never been able to work full time and have always ended up having to quit, be fired, or be treated so horribly that I left. I understand that a boss can’t make exceptions for an ill employee…they have a business to run. I get it. But how about just saying that…instead of being mean or making people’s lives a living hell?
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At times I still get amazed by some people’s lack of compassion and also their lack of understanding that they are not only making things harder for other people but for themselves. Surely it would be better to have a employee working part-time and doing a good job than having to go too the cost and effort of employing someone else.
Originally Posted by crohnie4life:
I just wish certain people who have no clue of what we go through to walk in our shoes for a week to see what we have to deal with. I bet they wouldn’t last a day.

Reply by Feanaro’s Wife- I was searching for a new family doc while pregnant with Lily. I was in the office when the lady doctor walked in, asked me several questions and then proceeded to tell me that she didn’t “believe in” fibromyalgia and that I was a drain on society and I needed to get a job…not that I would ever wish illness on anyone, not even people like her, I do wish she could somehow gain an understanding of what it’s like to not be healthy and that it’s not laziness or a choice.
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Only good thing was that you did not have to waste finding out she was unsuitable as your family doctor.

If this took place in a public area I hope you raised this with the surgery management, if this wasn’t her. The comment was not only rude but unprofessional.

I join crohnie4life and Feanaro’s Wife in wishing that everyone here goes into remission for a very long time. Also that the people whose meals you eat over the holiday only give you what they know you can eat and not let embarrassment over including something they shouldn’t result in them not telling you that have done this.
 
Yeah,I know…even from a medical family,I get excreceted upon.since as the ‘sane one’ I am expected to make hard choices even though I am often horribly chronically ill,and to suffer as a child if I made the less-profiatble decisions by their lights. Again,i learned much.

They cannot understand the suffering of others, and gave reliance on me for support and mistaken cruelty when their pain was no longer supportable. Though I think they lie in such too…shall I Show Mercy? I feel they will hate and resent all the more the more, but my heart is soft. I understand,I do not forgive or forget,but I understand…How they suffered,and I was the only outlet…I fled to save my own life and sanity destroyed in result,but here I am brave and perhapsmay be modest beautiful and wise and intelligent in my odd way,My parents were not TOTALscrewups anyway! Close though.
 
When people ask me what I do, I have the handy answer that I am on a disability pension. If they ask what for, I just tell them, without either whining or getting defensive, and that usually ends it. Luckily, since I’m Civil Service, I can make a joke about it: “Your tax dollars, not working!”

When someone is extremely insensitive and says something like, “Depression? that’s B.S.” or “Fibromyalgia doesn’t exist,” I I give them a Look and either turn my back on them or (since I’m usually sitting down) turn my head away and ignore them. Defending myself to them is just more stress, and I don’t need that. I just hear Ron White in my mind, saying, “You can’t fix stupid.”

I also have chronic diarrhea, probably from the fibro. So I have to miss engagements sometimes. If people ask what was wrong, I say something like “Let’s just say I had to stay within 20 feet of the bathroom.” That’s light enough to get a laugh.

For all you kind worriers, yes, I’ve had all the tests, including endo- and colonoscopy (yuck!), and there’s no obvious cause.

I try to plan things out based on how worn out they will make me. Two parties in a row? not doable. I need two days at least to recover from a party, especially one where I have a really good time! The bigger the party, the more stress, even if everyone there is a loved one.

So I do explain to people how good stress, like having fun with people, wears me out just as much as bad stress. I don’t want them to think that being with them is bad stress! Or that I don’t *want *to be with them!

God bless us all,

Ruthie
 
I agree with Ruthie. You need to have a positive sense of humor when dealing with a serious illness. After my stroke, I use to joke w/my good friends and family that my brain is still 1/2 baked.

I do brain games on the Webkinz site to keep my mind going and I try to bake or cook by using easy recipes. I only set the smoke alarm off once (that’s a first) and the meal turned out ok.

I have no feeling in my fingertips any more and I have to look at the keys on the keyboard now if I want to make sure I type accurately.

Even though there are things I am not able to do, I do focus on what I can do and when my nieces and nephews come over for a visit, they are very happy to explain how some of the Webkinz games work and are very patient with me. I love them so much!!

As for my Crohn’s, I write funny songs about my life experience w/it such as the 12 Pain of a Hospital, 12 Pains of Crohn’s, All I Want for Christmas (are no more flares), the Crohnie’s Prayer, etc. My friends think it’s hilarious and it keeps me sane. I am glad that my sense of humor wasn’t taken from me. 😃

I hope everyone is warm and safe during the storms here in the Northeast. Take care. Lisa
 
We have more snow in the Northwest, so don’t have to worry about going anywhere for awhile, which is great for me!!

crohnie4life – I can related to your lack of feeling in your fingers. I have numbness always in my hands and feet and then it spreads as I become more fatigued. My husband gave me heavy duty oven mitts for Christmas a couple years ago because I was always burning myself!

I also make up goofy songs sometimes! One I can’t exactly post here, but it’s to the tune of “I feel pretty” and rhymes with pretty: I feel _______y, oh so ______y, I feel itchy and twitchy and numb!
 
didi- you are a very creative person. have you considered writing a book? love the tune. lol 😃
 
Hey – just want to wish everyone a very Merry Christmas! I hope, in spite of health issues, that everyone has an enjoyable day. My prayers are continuing daily for all with ongoing health issues.
 
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