Topic : 05/30 Ask the Authors

A letter would certainly be a start.  My father was much like you describe your family.  He was very reserved and rarely showed any emotion.  I developed into a different kind of guy and I decided I really wanted him to know how I felt before it was too late.  I mailed him a letter and talked about everything important to me.  I was surprised to get a long and thoughtful letter back.  It's something I treasure greatly.

 

Later in life, I was visiting one day when we had to stop for gas.  It was just my father and I at a very busy multi-pump station.  Roughly thirty people were in sight.  I grabbed my father by the arm and kissed him on the cheek in front of the world and told him I loved him.  He wasn't comfortable at all, but he didn't pull back either.  He sort of mumbled "I love you too son."

 

 

Last year both my parents passed away.  I have never regretted putting him "on the spot" like that.  I am so glad I did.  As Mitch Albom said, there are a lot of days available to us.  It's just that we don't use them like we ought .

 

I wish you all the best, but remember that even if you don't get the kind of response I did, you still will have said what you need to.  That alone will be an enormous comfort later.  Good luck. 

I knew a woman who said she was too young to be saddled with a husband who had become a paraplegic in an accident. He was hit by a drunk driver.

 

On the other hand, I have a friend who devoted his life to making his wife's life easier after she contracted ALS.

 

I have a husband who has mental deterioration. His doctor wanted to spare us the expense of a cat scan so we can only surmise it might be alzheimers. I really think if the situation was reversed and it was me, he would remain a devoted husband. He was always a kind and considerate nurse when I was recuperating from anything.

 

It isn't gender.

 

Also, I don't think Nicole's husband meant it to come out like he did when he said he didn't sign up for it. I think he meant that he had a problem he wasn't equipped to understand yet. I think he will be kind and considerate and loyal.

I am 28 years old and was diagnosed with MS just 5 months ago. I am an attorney and have been married for almost 5 years... When I watched this show last night it made me just burst into tears.. Because I felt the pain... The pain of having something SO scary and not feeling like you can lean on your spouse... Its tough...When you are diagnosed with something like this, you NEED support and security from your spouse... You REALLY do...

As a husband, I am really stunned that you feel you can't lean on your husband. Maybe it's just taking him some time to realize that he has to step up.  Have you friends and family?  They are a great resource and have strength you may not appreciate.  I hope you can get in a support group.  They are really very helpful. 

 

One thing you must appreciate is that the people on this board will be here for you when you need to talk.  We may disagree and even fight a bit among ourselves , but we will do all we can to help. 

 

Please don't be afraid to reach out.  People really do care.

I was diagnosed with cancer at 22 and underwent some major changes as did my husband and small children. I can't imagine having had to go through that without my husband. He's been my rock. I have undergone many surguries since my diagnosis with colon cancer due to a genetic mutation, including one to have my colon removed. About six months later I learned that my 1 year old had the same genetic issues which was harder than anything else I had gone through. It took a lot of  convincing from my husband and others before I believed it really wasn't my fault. Anyway, all that to say that finding a support system is very important when you face something that can be so devastating. I know mine and my families faith in God have gotten us to where we are.

 

L

I watched that show yesterday and could have sworn it was my husband and I!  He is the same way with me, and I was diagnosed with MS 2 years ago.  I have fatigue and some balance and vision problems, but just looking at me, you would never know that I have MS

I am also an EMT with a volunteer ambulance service and that really bugs my husband.  He thinks that I should give that up and I would have more energy for our home and housework!  I feel that being a volunteer gives me so many rewards, and I may not be able to do this job for a long time, so I keep doing it!

I am 45 years old, and have been a housewife since my children were born.  My kids are 19 and 20 now, and there are some different things that I would like to do, and I don't honestly know if I can get my husband to do these things!  I have helped him farm for 24 years, and I just wish he could understand this disease and why I am not who I used to be.  We don't speak about my MS, we know it is here but, it pretty much remains under the carpet.

I do the best that I can do, and I have learned to modify my housework, for the fatigue, and I only do what I can do, and tomorrow is another day!  I do belong to an MS support group, but they meet sporadically and I am one of the few people in the group that can still walk without a walker or scooter.  The support group is pretty good for me, I learn about MS and how it effects other people, and I file the information away for future use!

I have not read this book but I have read and seen the movie The Five People You Meet In Heaven.  It touched me as we lost our daughter, Jessica, at the age of 16 yrs. old of Sudden Cardiac Arrest, I was the one to leave her for less than 30 mins. and found her and had to perform CPR.  I knew that she was gone but in my mind I was going to do what it took to get her back.  Even when emergency help came there was no hope.  We lost Jessica 2 years and 5 months ago, Jan. 3, 2005.  She seemed perfectly okay and literally in a heartbeat she was gone, no sign of problems.  She was our trooper as she was diagnosed at 4 years old with Epilepsy and at age 12 with Type 1 Diabetes, she lived her life to its fullest.  As I watched this show I thought what would I do if I had one more day with her, what would I say, do, or try to know is there something I could of done to stop her death.  I have slowly had to accept that God wanted her back before we were ready.  She was a typical teenager, she was not perfect but she was our "Angel" from her time of birth.

As I watched what also was going on with the mother and daughter, it is what is going on with many of our teens today.  We as parents want to do everything for our child(ren) but yes our children will rebel with the house rules.  Their minds are not fully developed and they do not think of the consequences of their actions.  We as parents have to still keep the rules in place for them to become successful adults.  With our children in their teen years we have had to do many different types of discipline for their actions.  One that has worked is if they slam a door in our face or lock us out of their room, then I take the door for 30 days for slamming, no earning it back no putting anything over the doorway such as a sheet.  If they locked the door then the entire doorknob with lock is removed for two weeks you only get one chance at this if it happens again then you did not get it back period.  Luckily for us the first time was the only time and never has happened again.  For cellphone bills over the limit if they did not have a job then it was scut work for them, ex: yard work or washing windows and screens until the bill was paid off.  We would also take the cellphone as it is a privilege not a right to have, same with having an auto you are required to pay for the insurance, and keeping the auto running.  It has taught us and our children to appreciate what they have in life and to be successful in their lives even with the loss of what we have had in losing our daughter, Jessica.  My hope is that the mother and daughter find a way to work their ways through their lives and maintain a relationship with one another.

HI, this show really spoke to my heart a lot, I have had fibromyalgia for about 15 years and my family has never understood what it means to be in constand pain. The only one that has ever even understood is my mom. I found these letters on the net and would like to share them, I hope maybe the girl that was on the show maybe she can get them somehow and show her husband, my heart just broke for her I know what she is going through.  Although I do not have MS I do know what it is like to be in constant pain and fatiuge. I have handed these letters out to my friends and family and it has helped them understand me a bit better, hope to help someone here as well.

Thank you

Rhonda

 

A Letter to Normals from a Person With Chronic Pain   Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.   In the spirit of informing those who wish to understand:
These are the things that I would like you to understand about me before you judge me.   Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.   Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.   Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.   Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.   Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.   Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.   Please understand that if I say I have to sit down,lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.   If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it.   There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.   If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.   Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.   In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.   I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.   \               ______________________________________________________________________________________       TO FRIENDS AND FAMILY:   I look normal. Don't let my outward appearance fool you; I am in pain. I am not the same person I was a year ago, or two years ago, or 4, depending on when it was you last saw me. I look healthy; I am not.   My condition changes from day to day, sometimes even hour to hour. Today I might be able to walk with you a few miles; tomorrow I may not even be able to get up off the couch. A week ago I felt almost human; next week I may feel like something less than what the cat drags in. I may want to do all the same things I used to: to work out, take long walks, socialize, keep some semblance of household order, but I may not be capable of it.   If I say, "maybe later", please understand and accept this for what it is, which is not an excuse. It is a reason. I don't enjoy my new limitations; I hate it. I might even be physically able to do today what you wish for me to do, but if I know without a shadow of a doubt that pleasing you will mean for me later an incredible amount of pain, I must say no. I'm not lazy. I just hurt.   I absolutely do not want pity. This is no reason to feel sorry for me--life is not perfect, and life happens to us all. This is the hand I have been dealt, and I intend to play it out. I don't blame the world for what I suffer, I don't rally against God. This is no one's fault. Not even my own.   I do not crave attention. I didn't decide one day that I was tired of living like a normal person, and that the means to a life of never again having to work, having my whims catered to, having friends and family treat me specially involved creating symptoms no one could see under a microscope. I loved my life the way it was; I was never depressed and I had plans. This isn't a cry for your attention. It just IS.   I don't feel sorry for myself. Why should I? Things don't always work out the way you'd like them to--this is one of those times. I can live with who I am now. I may not enjoy each day as much as I used to, but I still live for each day, and embrace whatever I can get out of life. Pain is my companion... But pain is not me.   The truly hard part--if you cannot accept me for who I am now, I am sorry for you. I won't waste precious energy chasing after you to cling to a friendship that probably wasn't as strong as I had once believed it to be. I cannot force myself to readopt who I was before and reassume the same roles. In this--preserving myself and my state of mind--I have to be selfish. If you cannot accept that I might not be able to contact you every day as I did before, or engage in the activites we once did, whether it was training together and working out together, or just bowling, then do me a favor and let's quietly part ways with no ill feelings. My life is going in new directions, and for me that might not be a bad thing. If the changes I have gone through disturb you, hold your criticism. I don't need it. I don't want it.   Life deals us all a bad hand occasionally. This is my turn. It happens, I accept it. I hope that you can, too.               ___________________________________________________________________________________________           Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness.
I am now velcroed to you for life.
Others around you can't see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun?
I took Energy from you, and gave you Exhaustion. Try to have fun now!
I also took Good Sleep from you and, in its place, gave you Brain Fog.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
Oh, yeah, I can make you feel anxious or depressed, too.
If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me.
I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try.   You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or"Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a"Normal" person, and can't remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.       _________________________________________________________________