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From Cared For to Caregiver: Coping with Tough Times and Chronic Fatigue Syndrome (CFS) & Fibromyalgia (FM)

  [ 138 votes ]   [ Discuss This Article ] • October 15, 2003

Dear Friends,

Out of control. That’s how my life has been in the past few months. Due to a serious illness in the family, I am now the caregiver, rather than the cared for. Our lives have been managed by the plethora of doctor’s appointments, tests and now treatment. Some of the tests have required traveling to other cities, and in one case we even had to stay over in a motel for a couple of nights.

We are now on a more routine schedule-finally! But I still have many increased responsibilities in the household. I am now doing all the shopping, cooking and driving to various places. I am trying to arrange for our cleaning person to come again, after about 3 months of having to cancel because we were at the beck and call of appointments of one sort or another. We have had more company, but they have been clear that the state of the house is not an issue (with which I agree, but it still needs some attention occasionally!). We are trying to find a handyman for a few repairs. I also have some “home nursing” type things I need to deal with. Those things are easier, because they come naturally.

I looked up control in the thesaurus to see if I could better define how these changes have reorganized my life, and how I can try to deal with them in a way that allows me to take care of myself too. There have been times when the lack of power over our schedule was oppressive. I am a person who does not deal well with mornings. I am more of a late evening, late night person, who has sleep onset problems in addition. So going to sleep before 1 am is difficult, if not impossible for me. And I do best with a minimum of 10 hours sleep. When we have an 8:30 appointment that is impossible. So I must try to sleep longer on other days. There have been times when I was sure I could not drag myself any further, but did.

My friends have asked how I can do this. My answer is “you do what you have to do, and deal with the consequences later.” I am dealing with some of the consequences now, running low grade temperatures again and having an increased level of pain. Fortunately, my doctor was very understanding about my need for increase in pain medication.

What does any of this have to do with you, my readers. First, for those of you who have written or will write to me, I may not be able to answer your mail as soon as I would like, but I will answer it at some point, so please write if you wish. In the meantime, I would encourage you to use the website. There is much information in the library, and others on the message boards, and in the chat rooms who are dealing with many of the same problems you are. They are a wealth of information and support.

Secondly, I would imagine that a good number of you will be in a similar position at some point in your lives, whether the illness be your spouse, child or parent. Your needs will have to be placed in a secondary position, at least as much as you are able to do so. It is important that you take your needs for rest and pain control into consideration in trying to manipulate or influence a schedule made around someone else. This is a difficult thing to do, and there will be times when it is impossible, but take advantage when you can have some power over your timetable. I slept until 12:30 yesterday, and until 12 today. I am trying to catch up on rest.

It is also important that you maintain your support system, whether local or online. You can probably also find a local or online support group for caregivers. In many ways I am lucky that I am a nurse, so I understand much of the medical “jargon”, and am comfortable with machines and treatments. Many of you who may be in my position will not have that comfort level, so a support group will be really helpful.

It is also important that you make time for yourself, whether it is to read, sit in the park, or whatever works for you, to decrease your stress levels. If you can find the time to indulge in an interest away from the illness and care giving, it will help your mental and physical health. Despite the illness, and its potential outcome, life goes on, and must be dealt with.

During a time such as this, many of your friends and family will ask “what can I do to help?” In most cases, the offer is sincere. Even if there isn’t a need right at that time, don’t hesitate to call them when there is. People want to help in a difficult situation. We just need to be willing to ask for that help. I was so thankful for my Mom’s friends and family when I took care of her during her last months with cancer. I don’t think I would have made it without them.

Last, I want to say to all of you, value your time with your loved ones. Despite any limitations you may have, let them know how important they are to you. There is a saying that floats around that says something like “Yesterday is a memory, Tomorrow is an unknown, Today is a gift-that’s why it’s called the Present”. This experience has taught me how very true that is. Cherish each day. Squeeze as much out of it as you are able. I hope all of yours will be filled with wonder, hope and love. Take care and be well.

Yours in health,



I welcome your comments and questions at: My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well.


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