Topic: Need some help from you about what it's like to live with chronic illness!
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
At my church in the summers the services are all lay led (led by someone from the congregation). This year I was asked to do one. So, my service is August 21st and my topic is learning from chronic illness.
I need your input to help me in writing the sermon. I am talking a lot in it about how I cope and what I have learned from having a chronic illness. So, I'd really appreciate it if you could answer a few questions. You can either post your answers here or e-mail me at [email protected]. The more you share, the easier it will be for me to bring everything together! Please also let me know if it's okay to use your name or not. If it's not okay, I will make up a name or have it remain anonymous.
If you participate and would like me to e-mail you my sermon when I'm done with it, I'd be happy to do so.
Thanks so much!
--Annie
1) How long have you been sick?
a) What have you been diagnosed with?
b) How long have you been diagnosed?
2) Do you have multiple chronic illnesses?
a) If so, which one(s) have had the greatest impact on your life?
3) How has living with a chronic illness changed your life and the way you do things, relate to people, etc.?
4) Have people understood what you're going through?
5) Have your relationships suffered or strengthened because of your chronic illness?
6) What has been the hardest thing to deal with about living with chronic illness?
7) How have you learned to cope? (Be as specific as you can with the ways you cope with people, friends, family, work, fun activities, etc.)
8) What have you learned from living with chronic illness? (Write as much or as little as you want)
posted
Arent you on vacation?Thoughts on chronic lyme-I regret that I didnt help people when I was healthy and plan on doing that if I ever get my health back.I now REALLY know what its like to be scared,not know your future,not have energy,how bad the medical system is,what its like to not sleep,to have neuro and psycho symptoms.I now know I must help others through these things.I know not to take life and health for granted now.I now see alot of things I use to worry about as very small problems.I have learned alot of lessons out of lyme and in a wierd way lyme has made me a better person but I am ready for this lesson to end.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
| IP: Logged |
Lyddie
Unregistered
posted
Annie, this is just another example of the incredibly constructive way in which you live with chronic illness!
I can't answer your questions right now (busy household) but wanted you to know that there is a great book called "Living with Chronic Illness"- I'll find the author for you. Lots of humor, actually.
My favorite part is about the experience og being asked "How are you?" I f you answer honestly, you feel like a drag, or fear drving people away...but then again, if you answer falsely "fine" you feel very lonely. It helps w/advice on this and many other things.
Years ago I read the most touching article by a then-dead cancer patient, who ahd written about his expereince with terminal illness. Facing death in a few months, he wrote that his biggest problem was etiquette! Again, as in how to answer questions from others...
Most of all, we think humor (sometimes black) is the best way to deal. Being humble and realizing there is a lot of suffering in the world and your particular piece of suffering isn't so tragic, just part of what is, being matter-of-fact, still being sensitive to problems of others, and still tryiing to contribute in whatever way possible.
Frankly, from what I know of you, you do all of this a lot better than me!
Posts: 2135 | From Tick Country | Registered: Oct 2000
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
You may want to check out the book "The Truth About Chronic Pain." I think that's the title.
It is based on interviews, and there is a section on "thinkers" talking about chronic pain, that includes religious leaders.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi arg82 Chainsaw said it really well--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I, too, liked what chainsaw wrote and feel the same way.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have difficulty asking for help and when I do it is not always a pretty picture.
I think if someone were to say to me, "I am coming over on such and such day to help you for such and such time on whatever you would like done it would be great.
Then I would need to be well enough to deal with them being here at that time.
Meals are also a problem with me. It would be great to have someone bring over a large meal I could eat on for several days.
I have one lady who calls once a week to see how I am doing. This has made such a big difference in my life.
When I first got sick, I was going to a church across the street from my house. I had a great deal of difficulty taking out the trash. I did not have my power chair at that time.
The pastor would run by my house twice a day and never once asked if he could help with anything. He would see me struggling to take out the trash. Of course, looking back...I should have spoke up.
It still is difficult for me to ask for help.
I also had put in a prayer request for help with household chores because I was having a great deal of difficulty in this area and not eating well.
I had put in the prayer request on a card and put it in a box.
At the next meeting, the pastor asked if there were any prayer requests.
Another member spoke up and said and don't ask for prayer for household chores...we all would like help with our household chores.
(I was trying to go to church when I could but I also had to lay down and was not able to sit upright at church)
The pastor then agreed with the church member and said he would like help with his chores too.
I no longer go to that church.
So, helping chuch members become aware is a good thing.
I told the church members that once I was well, I would like to get a group together to help out others.
I know that my life was very busy before lyme and time was a big factor.
But, I figured I could spend 20 minutes once a week helping someone who was going through what I was going through or went through.
I know there are many others in my small town who need help.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks so much for the responses. And keep them coming!
I have already been using a book called "The Delicate Balance: Living Successfully with Chronic Illness" and that has helped a lot. And I'm in the process of reading "Anatomy of an Illness" by Norman Cousins. I will look for the others mentioned today when I go into town to the book store (I'm on vacation in a little town in maine - Joe, you were right about that).
KAM, I'm so sorry you had such a bad experience with that church. It seems completely insensitive for people to say something like that. Asking for a prayer is hard to do (although maybe some people ask for them without really needing them or thinking about it) and for them to just completely disregard the fact that other people can't do the things they can do is terrible.
Keep the responses coming. This is great and I think it will help a lot with my sermon.
Posts: 2184 | From Rochester, MA | Registered: Oct 2000
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Annie,
I was thinking about things today and I think it is loosing my independence that is the most difficult.
I miss not being able to clean my home, etc. And finding good help is tough in the area I live in. I recently hired a lady who has cleaned things that have bothered me the two years that I have been here but couldn't do myself.
Also, It is very tough for me to go from 100 mph to 10 mph with lots of down time or rest time in between.
The good news is that I have had people take me to doctor's appointments that have been very good and others that I will not get in their car again.
There also is the problem with finding doctor's that do not work for the insurance companies, but have regaining your health as their top priority.
It seems most of us have to knock on a lot of doors before we get the help we need unfortunately.
I am interested in what you put together. Once I am doing better, I just might like to give a presentation myself.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
Kam...I'm sorry you had such a lousy experience at that "church" too. How awful!
I think the hardest part for me were the times [years and years of this] where I saw NO LIGHT at the end of the tunnel and I thought I was doomed to a lifetime of pain and misery.
Now things are better, and I see light at the end of the tunnel. But no one who has not been chronically ill has even an inkling of what that feels like.
Without my faith, I would have thrown in the towel in not such a good way. I knew that was not an option for me, and God has seen me through this and continues to heal my body.
------------------ oops! Lymetutu
[This message has been edited by Lymetoo (edited 18 June 2005).]
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks for the responses so far! I'm well on my way to writing this part of my sermon. I'm having trouble keeping it down to a reasonable length (trying to keep it under 15 minutes since the whole service is only supposed to be 30 minutes).
I have a few other questions that I realized would be very helpful to have more input on, too.
1) What does "hope" mean to you? (Define it, say how you keep hope alive, etc.)
2) How has living with chronic illness changed you spiritually?
a) Do you consider yourself spiritual? More or less so than before getting sick?
b) Do you believe in a greater power/being?
- If so, do you believe he/she/it has control? - Do you feel he/she/it has made you sick or let you become sick for a reason? Please elaborate.
I'm specifically interested in finding out, if you're spiritual or religious, how you justify a greater power/being (i.e. "God" or whatever you want to call it) letting something like chronic illness happen.
Thanks so much! You guys are great for helping me out with this! And the way things are going, I may turn this into a bit of a longer project to compile responses into something eventually.
posted
I deeply believe and have expirienced God.Chronic illness can show you just how frail every material thing is even your body.When you build everything on material things its like building your house upon the sand,not a good foundation.Illness can put your priorities straight.I belive you can give God control but that doesnt mean it will all turn around and be rosey but what I do think is that if you give it to God and Have a relationship with God that Everything material can fall apart but you will always have the supernatural peace inside that NOTHING can take away and will ALWAYS be yours if you trust in GOD.(what a huge run on sentance)
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
| IP: Logged |
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Anyone else have any input? I'm still in the process of reading through everything and trying to incorporate some of it into my sermon but I'm still interested in hearing from other people! And this may turn into a longer-term project for me so don't be surprised if I pop up now and then with more questions!
posted
Hi Annie - i started noticing slight problems 20+ years ago, became homebound 6 years ago. Finally, a year and a half ago I was diagnosed with babs and my doc is also sure i have lyme (always tested neg). Have also tested pos for stealth virus, herpes 6 and have high titers to ebv.
Most people have no clue what being homebound is like (I was once a visiting nurse and I have to admit that I really didn't understand until it happened to me!) I have friends who say 'take a prozac' and others with whom I thought I was friends (i used to be very active with hiking, biking, etc). who simply don't know how to make room for an inactive person in their very active lives.....my kids have been great and my sister-in-law is wonderful - she 'gets' it - I adore my siblings but they don't really understand...everybody gets so tied up in their own busy lives and problems that they just can't or don't empathize.
It took me along time to stop beating up on myself - now I simply realize I have no control...it also took me awhile to realize that I am really the same 'ok' person whether or not I can do anythng... It definitely took awhile to let the resentments go - people not understanding and my inability to 'do'! Those friends who do regularly call or stop by I treasure...
Having no control and asking for help are probably the hardest things for me to deal with. I feel really lucky that I am not in a relationship as I certainly wouldn't have the energy to give anything back...living alone it's ok if the house is dirty and the yard is terribly overgrown - would love to have a housekeeper but there are too many days when I'm not up to sharing my space wth anyone and people need to schedule their activities so I don't bother. If it happens, it happens...
I think I have really learned to count my blessings! I'm 63. I have two grown children that both seem to be in thriving relationships, and 4 and a third grandsons!! And they live nearby!! Also, I'm very lucky that money isn't a big issue...biologically, we need to be able to raise our kids and everything else is gravy - my gravy is just a bit lumpy! I have friends that get quite upset with this attitude as they think that if you take care of yourself you won't get sick and gravy should never be lumpy...I think in this country it's very easy to foget how blest we all are....
I find I have to have a modicum of energy before I feel lonely so I spend a lot ot time doing rather mindless things - crosswords, watching baseball games and reading (nothing very difficult as my brain isn't up to it!) did some knitting last year but that, too, has become too much...
I find Holidays the hardest - I don't want to put demands on my kids - My kids are wanted in 3 - 4 places for each holiday and I don't want to take away from their holidays (I'm always invited but seldom up to going). I finally told them I simply couldn't handle being alone another christmas and they've been grand...letting go of expectations is hard but necessary...and descending in the pit of self pity just makes things worse but I think everyone has to learn that for him/herself.....I don't know why I'm still alive....I am certainly not afraid to die anymore....I've had friends who have had cancer - some have died, some have recovered and resumed very active lives...whereas we simply seem to exist in limbo...
Annie, good luck with this project... Deb
------------------
Posts: 122 | From richmond, ca, usa | Registered: Feb 2004
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Annie This is a post that I wrote to some one that had been DX with Lyme and was just going to -- Blow it OFF --
He was bitten just a few days before-- and was Wasting his chance of living a healthy life--Many people wrote him and tried to convince him to get help.
Thought it might give you some ideas--
--------------------------------------- --------------------------------------- List of thing to do----
Do everything you ever wanted to do in your life-- in the next six months while you still can.
Get a good comfortable bed-- you are going to be there alot.
Take some pictures of how you used to be. Run around the block and jump up and down as many times as you can--just to see how it feels for the last time.
Spin around till you get dizzy- it will be good practice for whats to come.
-- You are going to have to learn alot of medical terms--so you might as well start now while you can still remember. --Eat all the food you Really Like- dont worry about your weight- this wont last long.
You are going to spend the rest of your life as a drug addict -just not the fun kind -so get on good terms with your doc and pharmacy. Closer the better.
Learn how to use spell check and get a lot of sticky notes-make some real easy type of file system so thing dont get lost ( I pin everything to the wall)
Do some simple math on paper-and save it- to prove you used to be able to do it. Hay-there you go- this could be the first thing you pin to the wall.
Clean your home - Do a good job its going to have to last a while. Bookmark Lymenet.org -you will be comming here alot. Oh yea- did I say to learn how to use spell check.
Also get a good comfortable chair - for when you not in bed. Take up some hobby that you can do from the comfortable chair. Paint by numbers is perty good except for all numbers and lines. Get a big paint brush-it wont matter.
Go to work and be productive-- build up as much sick leave as you can- it will come in handy.
Get hooked up with Meals on Wheels-- They deliver .Time is a waisten.
Talk to your neigbors - so they know who that was standing out in front of your house yesterday and wont call the cops and report seeing a strange man. -This will save you from getting out of bed and having to find some ID. Did you pin it to the wall?
Go to a bar--have some fun- Get Lucky if you can. Have Safe Sex--You dont want to give them anything.
Write down the names of the friends you used to have-Pin to wall--Look your doin good --you already have 3 things pinned to the wall.
Get to know your kids--they wont be around much from now on.You know how kids are. Take a vacation- your not going to be going very far from home - perty soon.
--Make a list of the 5 stupidest things you ever did- -Leave room at the top of the page for not taking enough ABX for long enough when the Lyme disease was easier to Kill. There wont be that many more stupid things you have done because you wont be able to do many more things. -- Pin list to wall.--Jay--
Here is the answers to questions you asked
1 --20 long years
1a--I still have not been DX by doc--they tell me I am FINE
2Yes --Lyme- Babs
3 Yes very much--Has ruined my life
4 No- not at all--most think I could get better if I just Buckle Down--work harder ect.
5 yes
6 the hardest thing besides the pain has been --no one understands what I have gone threw--They have no clue-- When I tell some one how it has been they think I am Lying--No one could live threw that.
7 yes some what --I just dont do anything much anymore--this disease has wore me down
8 being sick is very hard and no fun
Sorry for the short answers--I am not feeling well--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks so much for the responses. I haven't read through them yet because I have dial-up this week (while on vacation) and don't want to use the minutes to read through things I can copy and paste and read later. But I really appreciate the time you all have put into helping me. This has been a great experience for me and I look forward to hearing from other people, too! And I think I will keep asking questions every once in a while (maybe a "question of the week" or something).
quote:Originally posted by arg82: Anyone else have any input?
Peace and healing, Annie
I've learned that if you have a disease, and you can still say those words "thy will be done" you will have a faith that most healthy people are not "lucky" enough to fully comprehend.
Posts: 731 | From Humble,TX | Registered: Feb 2005
| IP: Logged |
lymeloco
Unregistered
posted
quote:Originally posted by arg82: Hi Everyone,
At my church in the summers the services are all lay led (led by someone from the congregation). This year I was asked to do one. So, my service is August 21st and my topic is learning from chronic illness.
I need your input to help me in writing the sermon. I am talking a lot in it about how I cope and what I have learned from having a chronic illness. So, I'd really appreciate it if you could answer a few questions. You can either post your answers here or e-mail me at [email protected]. The more you share, the easier it will be for me to bring everything together! Please also let me know if it's okay to use your name or not. If it's not okay, I will make up a name or have it remain anonymous.
If you participate and would like me to e-mail you my sermon when I'm done with it, I'd be happy to do so.
Thanks so much!
--Annie
1) How long have you been sick?
a) What have you been diagnosed with?
b) How long have you been diagnosed?
2) Do you have multiple chronic illnesses?
a) If so, which one(s) have had the greatest impact on your life?
3) How has living with a chronic illness changed your life and the way you do things, relate to people, etc.?
4) Have people understood what you're going through?
5) Have your relationships suffered or strengthened because of your chronic illness?
6) What has been the hardest thing to deal with about living with chronic illness?
7) How have you learned to cope? (Be as specific as you can with the ways you cope with people, friends, family, work, fun activities, etc.)
8) What have you learned from living with chronic illness? (Write as much or as little as you want)
Hi Annie, I will try and answer your questions as best I can.
I am feeling great right now! I've been diagnosed for five years. Had many tests, doctors, you know the routine.
Western Blot positive after third test. Mri had leisions.
Spect scan also showed decrease in blood flow. Second spect after antibiotic treatment is much improved!
I was able to work for three years until a stupid accident on the playground! A child asked me to get a swing down that was wrapped around the bar, and when I jumped up to push it over, something happened!
I ended up in the e.r. and found out it was two small herniated disc, and a torn rotator cuff. The stress of that, put the lyme over the edge! My i.v. was in at that time! Put stress on that one side without the i.v..
I have lyme disease, and not sure if I was tested for any other diseases.
I was told by my llmd that if I had two other diseases the biaxin and plaquenil will take care of them.
He said Babesiosis is found on the Vineyard, so only visited there once. I don't have any symptoms of that anyway.
I had to take early retirement so I wouldn't lose my insurance.
I hate not working! I miss all my friends! I used to be vibrant, outgoing, energetic.
I was a recluse. Family, friends thought if I got out, I'd be better. Nobody understood!
I am now venturing out little by little met a few friends for lunch, only to zone out while they were talking, and couldn't remember what I was talking about! We did laugh, it was funny!
The psychiatric issues have been the worse for me! When things happen, I just say this will pass, and it does!
I've had m.s.,als like symptoms. My kids thought I had alzheimers. One tried to get power of attorney, which caused me to be very hurt!
I understand why she wanted to, I had such memory problems!
I've always liked a clean house, and nice yard, but now have to pace myself about those things.
I've always had compassion for others. I think what this has taught me, is to take care of me first! That was difficult because I didn't know how! Taking care of kids was my identity!
I do have friends that e-mail or call, but they know I have social anxiety,and sometimes I have no motivation to do anything, never mind go out!
I had paranoia so bad, that I thought lyme was bogus! A few times asked my llmd if I was cdc positve? Just had a difficult time believing it. I look at that now, and know it probably was denial.
I have had a.d.d. since childhood, had many infections. We'll never know for sure if it stems from back then. A.d.d. wasn't known in my day.
I think I miss what could've been! I would've continued college, but had so much difficulty focusing.
On the good side of that, I was a teachers asst., and I knew how to teach these children if they had difficulty like I've had. It warmed my heart to see them finally getting it!
I do miss the kids! I'm hoping I can feel as good as I do right now, so I can volunteer at the school.
But right now I'm focusing on son coming home the 26th. This will be his last visit befor going to Iraq, so I'm hoping to get through this.
I do pray every night. For all of you, and our troops overseas, and anyone who I know that has other health issues.
I'm not overly religious, but I do believe in God. He has held me up when I can'thold myself up.
I believe he's angry at the fact, that we're taking land away from our wildlife animals.
I have written so much, I hope I'm not overwhelming you! If you need to know anything more, don't hesitate to ask.
I also want to say, I like the things you write, and do for all of us, and thank you!
posted
Hey Annie I put up a post for you but I spelled your name Anne I forgot the i the post is Anne and everybode else. take a look
take care
Posts: 94 | From Maryland, USA | Registered: Jan 2005
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I don't know if I will be able to focus on what I want to write as there is a leaf blower outside my window. Hopefully, the noise will go away soon.
You asked about the spirtitual part. I have really been trying to figure out what is going on with that lately.
For example: I wondered how I was going to get the dog food at the local feed store. I could get to the feed store in my power chair, but didn't know if I could carry the heavy bag home in my lap.
Shortly after thinking these thoughts, I had someone I didn't know tell me that they could help me get the dog food when I needed it. I hadn't even brought up the subject.
I have not been able to get out and about in my power chair because the batteries are no longer taking a charge. While out on one of my 20 minute walks or less to toilet the dog, I met someone who stopped me and told me that if I needed to let Buster run in a fenced in area to give them a call and they would drive us to the fenced in area near their work.
The one who offered to get the dog food is blind. So, I assume she was offering her husbands services.
Both ladies, I do not know anything about and as you know with this condition you need to be careful who you are around.
First, I need to deal with the obstacle of not being able to do these things myself. Is this pride?
What ever it is ....it cuts to my soul.
I would much rather be the one helping others out than needing help myself.
The landlord at my old place started mowing the yard and watering the plants for me when I first came down sick.
On one hand, it was comforting having him there on those days I was so scared and didn't know what was going on and couldn't open my eyes or move from the couch.
But, on other days...it made me angry that he was in his late 70's or early 80's and out mowing the yard and watering the plants and I wasn't able to do it.
Same with someone coming into my home and doing the household chores. It was OK when I was working full time and needed the help.
But, now that I am at home full time....I feel I ought to be able to take care of these things myself.
I try to leave when they come if I am able as I am not the type of person to lie around when others are working. It gets to me even though I can't get up and do things.
I am very thankful for all that God has provided. Prayers have helped me get through this.
I try to be content as that verse in the Bible says.
I also think of the women who touched Jesus's robe and was healed. I keep trying to touch his robe. How do I do that?
Am I learning what it is that I am to learn during this time. I suppose that like other times...It will be hindsight that will help me to see things more clearly.
I didn't understand God's grace or mercy before coming down sick. Now, I have a better understanding of this.
There were many thoughts or prayers that I had on my way to and and from work. Is this sickness an answer to some of those prayers?
Am I harboring unforgiveness?
This is just as much of a spiritual journey as it is anything else.
The bottom line is that God is in control here.
I do believe this is a temporary condition and I will regain my health. I just didn't think it would take this long.
I hope that I am learning whatever it is that I am to learn during this time and do not forget it once I am back in the mainstream of life.
The kindness of complete strangers has been the humbling.
Family have been the most disappointing...but that is not new.
The lyme doc, finding a low income housing, having a caregiver approved, the attorney who donated his old power chair to me and acquiring a service dog have been the things that have made the most difference.
I did want to write out the many blessings I have seen along the way but they were on a web site that is no longer there.
Perhaps it is time to start a journal of answered prayers when I am able to record them.
One thing that comes to mind is the selling of my car. I live in a small town. I put a sign on the car. A person came by and bought it for what I owed on it. The odds of that happening are pretty great as far as I am concerned.
I just had a few days to sale it before I needed to turn it over to the company and pay the fees....which I didn't have.
Another time was when I needed $20 for a co pay to see a doc. I had been sent a letter stating that if I did not have the co pay they would not see me.
I received the $20 in the mail that morning. The doctor's appointment was that afternoon an hour or so away. I had waited a long time to get in to see this specialist. It was a big relief to get this money in the mail out of the blue.
The doc turned out to be a nerd instead of a neuro but I later learned that is the norm in the managed health care business.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
Living with Lyme has made me focus on what I can do rather than what I can't do. It had made me more creative. It has made me appreciate little things.
Oddly it has made me focus on positive rather than negative things for example this week my rib pain finally stopped and was immediately replaced with severe back pain. It is difficult to walk now and I'm in a lot of pain. I'm so happy the rib pain is gone that I'm not upset about the new problem.
Now I focus on solutions rather than dwelling on problems. I find the little shred of something positive in a bad situation and don't let the negativity take over.
I'm grateful for very small things. I smile as much as I can. Last summer I had Bell's Palsy and couldn't smile!
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
[QUOTE]Originally posted by arg82: 1) How long have you been sick? Around 25 years
a) What have you been diagnosed with? Lyme disease
b) How long have you been diagnosed? Since 1993
2) Do you have multiple chronic illnesses? Yes a) If so, which one(s) have had the greatest impact on your life? Lyme
3) How has living with a chronic illness changed your life and the way you do things, relate to people, etc.?
I find it very isolating. I am unable to do most of what I used to do and have great difficulty accepting that I am not able to keep up. I flip back and forth between acceptance and fighting with all my might.
4) Have people understood what you're going through? For the most part no, I have a few friends that understand but I tend to minimize things as not to drive the few remaining away. Very few do understand.
5) Have your relationships suffered or strengthened because of your chronic illness? I think my relationships have suffered, I lost many people who I thought wre friends when I was no longer able to do the things they could.
6) What has been the hardest thing to deal with about living with chronic illness? Accepting that I can't do what I want when I want; only when I can. I still don't know when too much is too much.
7) How have you learned to cope? (Be as specific as you can with the ways you cope with people, friends, family, work, fun activities, etc.)
I keep a lot of what's going on to myself. I'm tired of having to explain things to people who can't grasp the concept of what it's like to be chronically ill.
While attempting to do fun stuff I try asnd pace myself and take frequent rests. sometime just sitting down where ever I am. People look at me funny but tough.
8) What have you learned from living with chronic illness? (Write as much or as little as you want) I have learned and feel that everything happens for a reason, which isn't always apparent at first. I've also learned who my real friends are. In addition i've learned that a clean house is less important than a nap.
Part 2 -
1) What does "hope" mean to you? (Define it, say how you keep hope alive, etc.)
I keep hope alive by keeping reminding myself that things will get better eventually.
I've recently had test pointing to something that may be contributing to the terrible time I've been happening lately.
The possibility that this may be something that strips away some layers of my problems has given me more hope than I've had in years.
2) How has living with chronic illness changed you spiritually? I think my spirituality is basically the same.
a) Do you consider yourself spiritual? More or less so than before getting sick? Perhaps I'm a little more so as a result of having time for introspection.
b) Do you believe in a greater power/being? Not in the generally accepted form. (I'm not sure that has come out sounding like what I mean.) It's hard to explain my bizarrely cobbled together belief system.
- If so, do you believe he/she/it has control? Not neccessarily. I don't know how to answer this one.
- Do you feel he/she/it has made you sick or let you become sick for a reason? Please elaborate.
No, I think I created a situation that left me vulnerable for such a thing. I have forgiven myself which is the hardest thingand will probably have to be done a few more timed until I've got it down.
I'm specifically interested in finding out, if you're spiritual or religious, how you justify a greater power/being (i.e. "God" or whatever you want to call it) letting something like chronic illness happen.
I am spiritual but not at all religious. I believe we're all part of something and there are reasons but they aren't always for us to know at certain times.
I have learned that noticing the small things that are so important terribly important as is helping others.
I don't know if any of this is helpful. It's very late and mat have made no sense. I'll take a look in the AM and see what silly things i wrote. I hope some of it was useful.
(As a side note: In my spare time, when I feel up to it, have been releasing books "into the wild" for strangers to find. Heh, it's very fun and someone you don't know has a little surprise to brighten their day, I love that. It lifts my spirits to know I've done something nice for someone.)
~trueblue~ (it seems I went on forever, I didn't mean to)
Posts: 3783 | From somewhere other than here | Registered: May 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/