Chronic Illness and the Holidays

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Didi

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Hello to all who suffer with chronic illness! There was a great thread a few months back on those who suffer with fibromyalgia, chronic fatigue and other chronic illnesses.

I know for me, the holidays can be an especially difficult time. For those of us whose energy is limited, we have to really pick and choose what activities we can participate in and what we can’t.

Because my central nervous system is damaged, I can’t be in environments that have a lot of noise and stimulation (basically, any party over about 10 people!). This is difficult because friends who continue to invite us to big gatherings are always disappointed when I don’t make it. (And I used to LOVE being at big parties and meeting new people 😦 )

But on the flip side, it has greatly reduced the hectic pace for me, and I find myself with more time to sit quietly in front of the Christmas tree and reflect on the true meaning of Christmas.

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.

How does chronic illness affect your Christmas plans?
 
**Hi Didi, I think you were thinking of my thread…

first of all, big hugs to you this Christmas season:hug3:

I just deleted a whole bunch of stuff because nothing is coming out right. Holidays are especially trying on those of us with chronic illnesses and can be sad, lonely, and frustrating times. Yes, we have more quiet time to focus on our Lord’s birth, and I am thankful for that. But also sad too.**
 
Didi, I understand something of the problem with sensory overload. My husband would appreciate how you feel, much visual or aural (name removed by moderator)ut gives him what he calls ‘white noise’ in his brain and can even bring on headaches. He can be exhausted by much stimulus of his senses.

Each morning especially I try to limit my conversation to him or I can stress him…practising self-control of the tongue! So I sit with him and keep him company…It also exhausts him if I speak enthusiastically, even on the phone…and I naturally am enthusiastic so I have to be careful not to be a sore trial to him. Still need practice!

He also finds it difficult to be in others’ company…he’ll accept family but disappear when he needs to, but he avoids other group occasions. He might manage one or two non-family visitors…but I don’t tend to invite any friends over except on very rare occasions, so he isn’t put on the spot. If we are food shopping and I encounter friends he hangs back hoping I won’t introduce him. He is always courteous towards others, but prefers not to engage if possible.

Family understand, but it seems difficult for some folk to understand. Our Christmas is confined to family members, no other social engagements. For me there’s Church and all my friends there, but he long ago abandoned faith. He’s not interested in sport, politics or religion, so his world isn’t very expansive. He’s a good man though and does things to help family members even though he never actually feels like doing much and has a huge inertia to overcome…the inertia you mentioned that causes last minute cancellation of events.

I hope you have a wonderful Christmas
 
Trishie –

Please tell your husband there are many who deal with this problem of sensory overload – he is not alone. Although you say he abandoned his faith, please share with him that I will keep him in my daily prayers.

When I feel like others don’t understand, or even try to understand, my limitations, I remember Jesus as he carried His cross. So many didn’t understand what it was that He was doing, and they cried “Save yourself if you are the Messiah!” and “You healed others, why not save yourself?” What they didn’t realize was the miracle that was occuring before their eyes. He knows what it feels like to be misunderstood, and for some reason that really helps me, and I’m learning to offer that hurt to Jesus and through Jesus for the redemption of souls.

God bless!
 
Hi Didi, I do understand totally. I too have turned down many Christmas parties. I have fibromyalgia and feel tired all the time. My dh belongs to the Knights of Columbus and the Rebublican groups and they both have had several parties already. Three of them coming up soon. I really don’t feel like going. I am also sick with a cold and that doesn’t help either. I have told him to go with our daughter, but I don’t know if he will go. But I do get more tired around the holidays due to all that needs to get done. Putting up the tree exhausted both my husband and I who both have chronic illnesses. Our dd is the only healthy one. Even our poor dog suffers from chronic illnesses. I just pray our dd stays healthy. Unfortunately, since we are not active, she is not active.

Anyway, enjoy your Christmas and have a blessed one. I hope to be done with this cold by then, I hope and pray.
 
hi didi, my heart goes out to you. I have Crohn’s disease, a type of inflammatory bowel disease, and I am flaring big time right now.

I was very sick for 2 days unable to hold anything down so I went to the MD. I was dxed w/my 2nd bout of the flu and on top of that, severe upper right quadrant pain.

I was able to eat a small bland diet today but my gut still hurts like heck. There is nothing else they can do for me as the immunosuppresants dropped my white cell count down to 1 and I had to stop treatment. Remicade failed after 3 tries, and Humira gave me the worst side effects similar to the flu. Thus, we are trying to up my Entocort to see if that will reduce the inflammation.

My tree isn’t even up yet as I have no energy and am in pain. I have cut back on my baking cookies plus decorating. I use to do so much but not this year. DH is very helpful by running my errands and making sure I drink my gatoraid so I don’t dehydrate like last month and was in the hospital.

My only wish this year is being able to enjoy DH’s cooking again. He makes THE BEST chicken, home made pizza, soup, etc. He can take any herbs and spices and turn it into something I can have. But when I am in grave pain, I just don’t have the appetite and want to sleep more.

My family understands and only a handful of close friends. The rest have had nothing to do with me. Oh, well. I’d rather have a few true friends than false ones.

Take care and I hope you feel better. God Bless and have a blessed Christmas. 🙂
 
Didi thank you for your caring message. It’s a joy to know you’ll be praying for my husband.

I love that you have such a generous understanding of anyone’s failure to understand your limitations and that you view your life with its difficulties in light of Jesus. I’m sure you’re a delight and a comfort to Him and that as in the fourth song of the suffering servant may souls will be saved. I would see Isaiah 53 as your theme-song before God!

Love, Trishie
 
Sorry to hear you’re so ill, Crohnie4life. Nana3, You too. I ask the Lord to give you both break-throughs in some way that life becomes more comfortable. Please God all you girls will have pleasant Christmases and are able to enjoy food and company.
I think I’d be a real sook if I had such uncomfortable chronic symptoms. I’m blessed only to be Coeliac (celiac) and if I have pain and difficulty it’s only if I eat food with wheat, barley, oats, rye…so if I do it’s self-inflicted.

There must be something very special about you girls to be able to endure chronic illness, discomfort and pain, and all the disappointed hopes in treatments. I guess Isaiah when writing for Jesus in chapter 53 was writing for each of you who carry such heavy crosses, are sometimes misunderstood, aren’t always valued enough, but all the while bearing the faults of others and praying for the conversion of sinners…to find on entering heaven that multitudes of souls have been saved through your lives. That’s God’s promise in that scripture, and that’s the image of Jesus’ life and yours.
 
hello trishie, thank you so much for your kind words. It is very difficult for me to make plans and then have to cancel due to not feeling well.

Some folks just don’t care to understand what we “crohnies” go though on a daily basis. It’s like the worst stomach flu but the gut pain is constant and throbbing. If a blockage is involved, the pain is is very excruciating. I’ve had many of these w/the most recent 1 month after surgery in September. I had a full blockage w/a surgeon on stanby in case the NG tube in my stomach failed to alleviate the pressure build up. Thank God for dilaudid.

Another thing I hate is switching my diet from regular to bland or even baby food just to get the nutrients I need. I figure if it’s gentle for little ones, it’s good enough for my sore stomach and small intestines.

Anyway, I really appreciate your prayers. Thank you. Lisa 🙂
 
My heart aches for you Lisa. I used to get the most excruciating pains before I was diagnosed and began the gluten-free diet, but I can’t imagine how awful to have such as you describe as a way of life. Sometimes I wish I was so good, so holy, that God could use me as an instrument of healing. But I’m not. If only one could be as good and holy as our brothers and sisters need us to be. Or we had more Padre Pio’s around with the gift of healing. All I can do is think of you and the others and pray for you. And offer you up to God as gifts of amazing courage.
 
ok, now you are making me blush. lol

I don’t think I have courage. There are days where I will call my mom and tell her “I want my mommy to make me feel better” as it gets so bad.

There are days where I feel like giving up just because I am so tired of hospitals, tests, MD visits, etc. but then I think of my 3 nieces and 5 nephews ages 2- 11 yrs. old and how I should set an example for when things are tough in life, you have to face them, decide whether or not to run from it or work w/it, and ask for help when things can’t get done.

My DH prefers to do everything himself but this last surgery, I had my mom come over to help w/the laundry and my bassett hound, Ike. He was dxed several months ago w/diabetes and I am in charge of giving him shots, testing the urine, and making sure he has his snacks throughout the day so his sugar doesn’t get low. I have already seen him crash due to low sugar and it is scary. My husband saw it for the first time after I came home from the hospital so he knows now what I go through when it happens. I hate poking him but realize that the insulin will help. I have to give myself a Lovenox shot in my gut 1x day due to a genetic clotting disorder that caused my stroke at age 37. I had a 12" clot on my brain that almost killed me. I am grateful that my life was spared and able to recover for the most part.

I still don’t think of myself as brave or even a saint (an MD told me that 2 months ago when I was blocked. the only thing I wanted was pain relief STAT.). I often wonder how the heck I get through the rough times esp. if it’s been a nightmare for me.

oh well. I am still able to volunteer for the local Crohn’s & Colitis chapter and ostomy support group. I counsel newly dxed pts. who have Crohns and have to have the surgery. Mine was at the age of 17. I needed it to save my life. Through all of that, I still managed to graduate high school and go on to college and get on the dean’s list even after taking a semester off for more surgery. I’ve learned to cherish my good days and to rest when I feel lousy. In a way, this illness made me grow up quicker than most and appreciate the things we take for granted.
🙂 🙂 🙂
 
You’re an amazing girl!

Your husband now also in my prayers. He sounds like a real treasure!..Trishie
 
Wanting pain relief is fine. A friend wished Saint [Padre] Pio, already advanced in years, a ‘long life’. Saint Pio, who was in constant severe pain, replied, no doubt with his usual humor, “What have I ever done to you?”

Some notes from my journal that may interest you

'Padre suffered continually for souls and was known to say—“If you knew the value of suffering, you would never give it up.” Nevertheless, he prayed for healing for others, and advised anyone in their difficulties to seek divine assistance.
**“It is not a loss of patience if one asks Jesus to take away pain, when this becomes insupportable to us and beyond our strength, nor does one lose the merit of the suffering which is offered, by asking this of God.” **

“**Pray that God will console you when you feel the burden of the Cross, for in doing so you are not acting against the will of God, but you are placing yourself beside the Son of God who asked His Father during the Agony in the Garden to send Him some relief. But if He is not willing to give it, be ready to pronounce the same ‘fiat’ that Jesus did.” “When least you are expecting to be liberated, Jesus, who cannot bear to keep you long in affliction, will come and relieve and comfort you, giving you new courage.”

“He is the Father of all; He is so in a very special manner for the unhappy.” “The Cross will not crush you; if its weight makes you stagger, its power will also sustain you.”

“What does it matter whether Jesus wishes to guide you to heaven by the way of the desert or by the fields, so long as you get there by one way or the other? Put away excessive worrying which results from trials by which the good Lord has desired to test you; and if this is not possible resign yourself to the divine will.” **

With love, Trishie
 
Checking in and subscribing. Bed-bound or at least house-bound more days than not. Hard to do holidays (read that as holy days) when you can’t get out. No Mass for 2 weeks. My family jokes that I am not a C&E Catholic. I am always too sick to make it those days.

But family love and support help me get through. When my burden feels too heavy someone always comes along and lifts it. I have long ago let go of any acquaintances who just don’t “get it.” My garden of friends is still very full!
 
Trishie said:
Sorry to hear you’re so ill, Crohnie4life. Nana3, You too. I ask the Lord to give you both break-throughs in some way that life becomes more comfortable. Please God all you girls will have pleasant Christmases and are able to enjoy food and company.
I think I’d be a real sook if I had such uncomfortable chronic symptoms. I’m blessed only to be Coeliac (celiac) and if I have pain and difficulty it’s only if I eat food with wheat, barley, oats, rye…so if I do it’s self-inflicted.

There must be something very special about you girls to be able to endure chronic illness, discomfort and pain, and all the disappointed hopes in treatments. I guess Isaiah when writing for Jesus in chapter 53 was writing for each of you who carry such heavy crosses, are sometimes misunderstood, aren’t always valued enough, but all the while bearing the faults of others and praying for the conversion of sinners…to find on entering heaven that multitudes of souls have been saved through your lives. That’s God’s promise in that scripture, and that’s the image of Jesus’ life and yours.
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Thank you Trishie for your kind words too. The words you say hear reminded me of what an older woman once told me too. Once I was in church after Mass and in so much pain and crying. She came up to me and asked me what was wrong. I told her everything. I told her that I do offer up all my pain and sufferings and she told me that the day I go to heaven that I will find many souls there ready to thank me for helping in saving their souls by joining my sufferings to Christ. Thanks for reminding me of what she said. My suffering is greater now than when she first talked to me for now I am married and my dh is an extra cross for he has his mental illness and that is a whole other cross as well as having chronic illness as well. It is all very difficult at times. I just want to say that I really feel that the Holy Spirit inspired you to write the words you wrote above for me to remind me of my work here on earth. Even if I can’t go out a lot, I know I am a suffering soul and that is my job here for now. I still offer everything up, but lately spiritually I feel empty. Thanks again. May the Lord bless you and I will pray for you and your husband.

I will also pray for all those here who wrote in chronic pain during this holiday season. We are all suffering souls. Offering it all and receive the Sacraments as offend as you can. That is the source of grace and strength for us all.
 
I think it was Archbishop Fulton Sheen who said that there is so much wasted suffering in the world. If people only knew the good it could bring about.

Mother Teresa said “Our Lord must love you much to give you so great a part of His suffering.”
 
Ok, I have to decide about going to a large gathering tomorrow night. It would be fun, but there are also a LOT of people there, and I probably know about 1/2 of them. I really have a problem sometimes with meeting new people (never used to) for a couple of reasons.
  1. It takes a lot of social energy to meet someone knew, put in the effort to get to know them (and try to remember things) and process all the information coming in, all the while having the general noise from the party in the background.
  2. I always struggle with what to say when people start asking “What do you do?” Do I go into my long story of health issues? Usually if I say something generic like “I’m having some health challenges and not able to work right now” they usually want to know more. Then I sometimes feel like I’m being a downer to everyone, even though I try to stay positive with things like “There have been a lot of blessings in this time, etc.”
How do you all deal with these issues?
 
hi didi, I feel for you. I tend to have a funny answer to try and avoid personal questions like"oh, I take up space and have staring contests w/my basset hound" or “I prefer to stay at home and take care of my DH since he loves my home cooked meals” and then I’ll quickly change the subject.

I have a hard time remembering names and such due to a stroke I had 3 yrs. ago. Also, going out takes a lot out of me so I just go to my family’s homes and my best friend’s for the holidays as they are very accomodating to my needs. DH won’t go to his company’s holiday party since all they do is drink, gossip, and get drunk and act stupid. He’d rather be w/me and family as well.

Hang in there and know you are not alone. I hope you feel better.

God Bless. Lisa 🙂
 
Didi said:
Ok, I have to decide about going to a large gathering tomorrow night. It would be fun, but there are also a LOT of people there, and I probably know about 1/2 of them. I really have a problem sometimes with meeting new people (never used to) for a couple of reasons.

I hope you have fun!
  1. It takes a lot of social energy to meet someone knew, put in the effort to get to know them (and try to remember things) and process all the information coming in, all the while having the general noise from the party in the background.
I feel for you. I am the same way and no one could understand how truly exhausting it is unless they’ve experienced it.:hug1:
  1. I always struggle with what to say when people start asking “What do you do?” Do I go into my long story of health issues? Usually if I say something generic like “I’m having some health challenges and not able to work right now” they usually want to know more. Then I sometimes feel like I’m being a downer to everyone, even though I try to stay positive with things like “There have been a lot of blessings in this time, etc.”
I think what you say is fine, maybe even add a name or two to your “health struggles” and that may be enough. For instance I might say “well I suffer with Fibromyalgia and am not able to work right now”… if they continue to ask questions I kind of have to judge if they are being sincere or just polite. Sincere I am happy to answer, polite I like to give them a way out, lol. “Well, it involves a lot of pain and extreme fatigue, let’s talk about something more fun, it’s a party” said with a big smile.

How do you all deal with these issues?
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**
I haven’t had the opportunity to go out for about 2 years so I don’t know how I would handle things now. I certainly don’t want to be a “downer” talking about my poor health and my toddler’s sensory and sleep issues…but that is my life right now so I have nothing else to talk about, lol. Maybe it’s a good thing I’m not invited anywhere this year:D.

But seriously, just ask other people questions about themselves and keep them talking. Comment on the food, the decorations, the person’s outfit…whatever. There is a lot to talk about if we just get past the nervousness of how to skirt the topic of not being “normal”. I am sure there are many people in the same type of situation at social functions…they may have just lost their job, or had a relative die, or suffered a miscarriage, or had explosive diarrhea and are worried it will come back during the party(:p)…

**
 
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