Chronic Illness & ICI

ICI (invisible chronic illness) can be debilitating pain, fatigue, weakness, cognitive impairments, and/or other symptoms that are not visible to others -- they are usually lifetime illnesses that have no cure, difficult to diagnose and to treat, unpredictable, and very hard for us to explain or for those around us to understand.  

Blending Illness and Life by Joyce Jamerson Most of us have our daily struggles; struggles that require patience and planning.  These may include child rearing, money, illness or the rigors of a job outside the home, as well as many other things. We won’t list all the possibilities; it could be depressing!  Illness can be varied, from a temporary cold or flu to long term life altering diseases that require stringent treatment and many points in between.  The purpose of this article is to give some insight into living with an invisible chronic condition; one that may not require confinement.  As a reminder for those who may not have seen previous articles, my health problems include IC (interstitial cystitis), Fibromyalgia and Celiac disease.  My husband is a preacher, so balancing illness and schedules is sometimes a challenge.  There are times when I simply have to stay home and rest my cranky body; in spite of my brain telling me there is much to do.  For instance, recently there was a lectureship at a neighboring congregation with speakers both morning and evening. Prolonged sitting is not one of the things I do best, but we took in as many as possible.  In order to do so, resting a little in the afternoon was essential and other choices had to be made to have the week go smoothly.  Because of diet restrictions, meals must be planned ahead so shopping, cooking and storing some things in the freezer becomes necessary. Failing to plan ahead can sabotage the best of intentions.  When we’re hungry, we’re hungry!  Snacking on forbidden foods can bring on pain episodes that can last for days.    Planning for our own gospel meeting in a few short weeks is already in the works, too.  We like to be in one another’s homes as much as possible and enjoy being with the visiting preacher.  Dietary restrictions require an advance phone call or two; to make things easier.  Those in our local congregation know of my health challenges, so I’ll ask about the menu and ask if I may bring something for everyone to enjoy and if I need to bring anything for myself.  Sometimes the menu is accommodating and sometimes not, but I do not expect the hostess to prepare according to my needs.  I can easily take a plate for myself and still enjoy the company.    Although there have been times when I really wished I could sample what was being served, the principles of self control and putting others first help to dim the poor little me, I can’t have what every one else is having syndrome.  Life is what it is and making everyone else uncomfortable is not the goal.  Besides, if a certain food brings on illness, it’s not so tempting anyway!    Obviously, my being able to travel with Frank is somewhat hindered.  Since it is tradition to eat in one another’s homes during special studies and gospel meetings, it’s asking a lot to expect the cook to prepare according to my needs.  If I do go with him, a list can be sent ahead of foods I can safely eat.  It’s easier for the cook to see what is safe, instead of sending a list of negatives; no gluten (wheat, rye, and barley), no soy, no dairy and on and on.  (Actually, it’s rather simple cooking and since many households are more health conscious these days, it may not too difficult for some.  If casseroles are heavily used, it would be more difficult.)  Eating out is a possible solution, especially for those who are unnerved by my restrictions or by those who work outside the home but still want to enjoy the fellowship.  When we’re entertaining at home, many times my meal will be safe for me; sometimes it is not.  I cook both ways, using my husband as the official taster for gluten containing items.  Pot luck dinners require a bit of planning.  Because of cross contamination, a buffet is very risky, so it’s better if a plate can be prepared ahead of time.  Some have asked how I handle taking communion.  We commune every Lord’s day, so I keep an unleavened rice cracker in my purse.  At the proper time, I’ll partake of that, while others are partaking the regular kind.  It was my last gluten item to be given up but upon learning that one small diet infraction every two weeks could keep the immune system stirred, the change had to be made.   I was very self conscious about it at first, but it’s a necessary step in my health journey.    Fortunately, I have a husband who helps me out a great deal.  He can’t cook, but is superb with the vacuum and pretty handy with kitchen clean up as well.  After having a group over, I will put food away, but then he shoos me out of the kitchen, loads the dishwasher and tidies up.  That one thing allows me to face entertaining with a better attitude.    Whatever your situation, proper rest and planning ahead can make difficult days easier.  Work within your limits and try not to sabotage your own schedule.   Paul said he learned to be content in his circumstances, Philippians 4:11.  That was spoken with the voice of experience; it didn’t come easy for him.  With diligence, it was a trait that he developed.  At times, I have felt guilty for not being able to do everything that I felt others expected of me.  Actually, I was my own tormenter.  I set more stringent goals for myself than anyone else could impose on me and felt badly when my list of things couldn’t be accomplished.  A long time ago, I purchased a book entitled, “When I Relax I Feel Guilty” by Tim Hansel.  I’ve referred to it often and particularly remember one statement ~ God called us to be faithful; not frantic.  Many times we tie ourselves in knots before we even start because of unrealistic expectations.  Some aspects of illness have actually been a blessing ~ giving me permission to slow down; to be more realistic and to enjoy some simple things in life.  Many things can be accomplished while relatively sedentary; note writing, phone calls, grocery lists, menu planning, and especially prayer and Bible study. Then too, there are days when fatigue hardly lets you do any of these things. Why don’t you write in and tell us your favorite way to rest and regroup?  What are your tricks for coping with fatigue and illness?  Others could surely gain from new insight and wisdom.  If we have to live with invisible chronic illness, may we do it well!   Use this box to answer Joyce's questions: (1) How do you like to rest and regroup? (2) How do you cope with fatigue and illness?   .

Let nothing be done through selfish ambition or conceit, but in lowliness of mind let each esteem others better than himself. Let each of you look out not only for his own interests, but also for the interests of others. Philippians 2:3-4 F Illness is demanding. It requires mind and body control just to get through our daily routines. We need to try our best, within our ability, to try and put our mind on others and not be consumed with our own needs and desires. Do all things without complaining and disputing, that you may become blameless and harmless, children of God without fault in the midst of a crooked and perverse generation, among whom you shine as lights in the world, holding fast the word of life... Philippians 2:14-16 FThere is a difference between honestly answering, "How are you?," and complaining; one is stating a fact, the other is an attitude of the heart. Complaining is a rebellion against our situation and a refusal to accept it; it is a conscious decision that we will not be happy as long as we live with illness. On the other hand, acceptance and living in the spirit will bring the peace and contentment we need to allow our lights to shine as children of God. But what things were gain to me, these I have counted loss for Christ. Yet indeed I also count all things loss for the excellence of the knowledge of Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them as rubbish, that I may gain Christ. Philippians 3:7-8 FThere is something more important than loss of health. Those who live in the world of good health like to say, "As long as we have our health, that's all we need." And what happens when they lose their health? Hopefully, they find out they were wrong - good health is a blessing not to take for granted, but it is not something we, as children of God, need. Our need is gaining Christ and the excellence of His knowledge.                                                                     -Pat

Use this box for "What I wish everyone knew about living with chronic illness: WHAT WE WISH EVERYONE KNEW ABOUT  CHRONIC ILLNESS I would like to comment to the person who had a hysterectomy in her early 30's.  I too had a hysterectomy at 27 but had 2 kids who were 4 and almost 2.  It hurt to know that there would be no more children, but I already had children.  Why not look into adoption - there are lots of children who need parents, if not adoption then do volunteer work as a Big Sister or work with children in need of a friend.  Lots of children just need a friend to talk to cause parents or parent is busy trying to earn a living and other problems - just be there for a child.  You can love that child like they were your own and do for them as they need. Maybe even foster parenting would be your answer - there is lots of possibilities you can do to help your mother instinct. Thank God, God sees the heart and the truth within there. At least another recognizes the difficulties besides the one feeling it. Unfortunately we live in a world where the 'visible' is the 'judging line', but fortunately we follow a God who does not see as man sees. God bless you daily and rememeber James 1:17 applies to you too even when you are so very tired. James 1:17: "Every good gift and every perfect gift is fro above, and comes down from the Father of lights, with whom there is no variation or shadow of turning." When you have ulcerative colitis, diverticulosis, and IBS you must always know where the bathrooms are!  When I am having a flare up and miss services, I am told, "There's a bathroom at the building, you can be there just as well as be at home!"  Don't you think I know there is a bathroom at the building?  Do you know how embarrassing it is to have to get up over and over again during services.  Even if no one knows what's happening, your mind has you convinced they do.  And how humiliating when someone else comes in the bathroom while you are there! I'd rather stay at home and use my own bathroom, thank you, and ask others to please, PLEASE, understand. It is so depressing to be feeling sickly all the time, but people think if you look OK then you are.  Little do most people understand about illness.  Getting dressed is a big deal and exhausting also.  Going out shopping is a really big deal and very tiring.  Most of the time I only leave home for just doctor appointments, trips to the pharmacy, or short quick to take care of errands. Just because your outward appearance looks ok, most people assume you are ok.  Little do they know that the time it takes to get dressed for Church services, you are so tired out you need to rest.  Do not miss because I want to - just do not have the strength to get ready and go.  I have osteoarthritis, missing discs in my spine, aching and hurting most of the time, plus I have had almost constant urinary infections for almost 2 years.  The constant antibiotics drags you down plus the infection takes your strength and energy. Do not think just because I look OK that I am. Makeup can hide a lot of things.  Most of my days are spent in gown and robe or muumuus.  Too much energy to get completely dress.  Thank goodness I have a husband who understands and is a very good cook or brings in meals.  Also we can afford to have someone come in occasionally to clean house. In between I try to keep things as clean as I can. A trip to shop at Wal-Mart is a huge outing for me, but tires me out so it is 3 or so days of resting after going. I had to have a hysterectomy in my early 30's so I will never be a mother and won't be a grandmother. Ever. But hey, everyone says, "Here, take mine," THAT'S SO NOT HELPFUL! I missed out on a whole lot of mothering because my Mom had early Alzheimer's. I search for mothering where I can find good sources (usually my sisters in Christ). I  would  wish  that  people  would  understand  that  with  fibromyalgia....we  may  look well  and  some  days  have  alot  of  energy  and  the  next  day  be in  much  discomfort.  It  is  so  hard  to plan  ahead.  Some  days   those  hugs  that  we  really  need  hurt  our  body  but  lift  our  spirits...be  gentle! I have fibromyalgia and arthritis.  When it's cold or damp, I am stiff and obviously in more pain.  But I wish people could understand that when I'm not in a lot of pain, Fibromyalgia doesn't just go away.  I still ache all over - ALL THE TIME - and I still feel like most people feel when they have the flu, except I don't have a fever. I'm so tired that it takes great effort just to go anywhere.  But I don't "look" sick.  Even those who know I have Fibromyalgia don't seem to understand that just because my face isn't twisted in pain, my body is still struggling to be at worship or to do things that I'm supposed to be doing.  I'm not bitter about this.  I just feel like others think I'm making excuses when I say I cannot be at a gathering, or go shopping with them, or go walking with them because if I do that I won't be able to do what I must do tomorrow morning.  I loved the spoon theory.  It's a perfect illustration.  I don't think well folks will ever be able to fully  understand how many ways an invisible illness changes everything in one's life. I wish people would know how embarrassing ulcerative colitis is.  The urgency of having bowel movements comes as quick as a hiccup. If you are brave enough to step outside of your house--your first concern is where are the bathrooms.  I try to keep extra clothes with me--just in case of an accident --Then of course there's the fear and depression  that sets in when you see the blood--which is common with this disease.  I'm always on edge--what if?? I used to invite people home from church on Sundays, and often had covered dish dinners at my house.  It was fun and I enjoyed it.  Because of my chronic illness, I can no longer plan such things unless I do it on a tentative basis.  First I have to find the energy and have a day with less pain than usual so that I can vacuum and clean my house, including the bathroom and kitchen.  The problem is that if I manage all that, I'm usually not able to do any entertaining for several days.  Meanwhile the house becomes a mess again.  And I'm so embarrassed when people stop by now, without calling first.  I hate for people to see my carpet, kitchen and bathroom dirty.  I feel like they think I'm a slob.  And I'm not.  I'm a clean person.  I just can't keep up with cleaning and laundry and cooking for my family without doing it, a little at a time.  I HATE being like this.  We can't afford to hire someone to help.  A couple of sisters at church have offered to help, but it's so embarrassing to have them see my house when it's so messy.  And I feel so guilty not helping the one who volunteers to help, when I don't LOOK sick.  I feel a lot of guilt.  That's probably more my problem than others making me feel guilty.  And it IS worse when company shows up from out of town, who may not know much about my illness.  I cringe if they come when I've had a rough week or two and the house looks like I am a lazy housekeeper.  I see their eyes darting around at everything.  Not much can be done about it.  I just hate feeling like others see me as lazy or uncaring about my home and family.

Is there a topic you'd like discussed about chronic illness or ICI? A topic I would like discussed on this page is: "Ha ha, we're sick and you're not." (The benefits of being in the exclusive Chronically Ill Club)   We have learned that most of the people do not understand nor really care to understand your personal situation.  Those who really care and love you will be there to help you when you need help, just forget the rest of the people. We learn to do so many things from sitting on the bed - like put on your shoes, put on your pants, put on your shirt, comb your hair (forget the styling), study your bible lesson, talk on the phone, eat lunch - oh yes try to sleep (impossible)!  (Yeah, and to think "normals" just use their bed for sleeping! Look what they're missing out on.:-) We know better than anyone else how we feel and what we are capable of doing - wish the healthy and well others would understand our situation. Do not need sympathy nor stories of how capable we should be doing - just compassion and understanding. (yesiree, I agree) "Normals" have to have a much more wonderful day to have it to be a wonderful day than the wonderful day we deem to be wonderful. We meet our insurance deductible in mid-January. Our disabling chronic illness is more real than your imaginary medical expertise. Pain isn't all bad, it reminds us we're still alive. We've gained energy management. When we bend over to tie our shoes we wonder, "What else can I accomplish while I'm down here?" We must be better looking than the general population because we are told so often, "But you look so good." FROM A READER: We learn about what others really think of our situation [and we treasure true friendships-see end of comment. pg] Sadly most of the people do not understand or do not want to understand. People need to understand that ICI is a very real problem for many, though hard to understand and realize we need compassion not just lip service of "Oh, I understand your situation."  When they have no idea what your life is like and usually do not care to understand at all.  Treasure the people who understand and as good listeners.  I have a dear friend who has so many more health problems than I that we share a phone conversation most every day.  We know that the other understands completely and is there to listen and offer help if needed. ADD YOUR OWN IN THE BOX BELOW: wwwwwwwww Complete the following sentence and hit submit. "Ha ha, because we live with chronic illnes we....

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