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How do you stay off the roller coaster?

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Chronic Fatigue Syndrome
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Posted 1/23/2007 12:24 PM (GMT -6)
One of the hardest things for me is the emotional roller coaster ride that comes with the ups and downs in my energy. For example, I had been doing really well getting out of the depression until the other day when I went to the museum. I saved up my energy to go, and knew that I wouldn't be there long, and I would be going slow, but I thought if I took it easy I could finally manage a low-key visit to at least one or two of the galleries. But no. I ended up needing a wheelchair. I was so saddened. It doesn't always have to be so dramatic though. When my energy goes down, so follow my spirits. And no, it isn't the other way around, the physical aspect comes first, and then I feel so down and pessimistic. I can't seem to find a middle ground. How have others separated these?
Posted 1/23/2007 1:53 PM (GMT -6)
Pasara,
I don't often post here because my fibro is worse than my chronic fatigue but I can tell you what I do for my condition that helps. When I was first contending with this disorder I had the problems you have with acceptance and depression. I went thru the grieving process for a few years, my doctor has me on anti-depressants to help maintain my serratonin levels, and I have learned to accept help gracefully.(Well, not all the time, but most of it!)I am also taking Malic Acid (3200mg a day), magnesium (400 mg) and calcium (600mg) on her advice to help my energy levels. These are over the counter supplements that have proven to help some fibros and CFS patients. You could do some net research on this and ask your doctor.

Question: Is it possible you are still thinking you can handle this disorder without help? I am going to a huge museum tomorrow with my brother. I am taking a wheelchair with me and will start the visit in it and continue in it. I have already tried to do things without the wheelchair... big problem! He knows he's gonna be pushing me around... I know I'm going to need his help or I won't be able to have this fun outing with him. There in lies the secret. I KNOW I can't count on my body to make it thru the day. So I made arrangements to have help.

You said something that caught my eye... "I saved up my energy to go," As far as I can understand this disorder we can't save up energy, only use whatever is available at a given time. I don't think we can rest-up ahead of time, only catch up a bit when we are exhausted. For me, I always expect to feel my worst, make arrangements for that, and if I feel pretty good then "HOO RAY!" I don't know how long you have been dealing with this so maybe it's just taking time for you to accept it?

Wish I could be more helpful.
Posted 1/23/2007 2:25 PM (GMT -6)
I'd agree with Jeannie in that I've never been able to save up energy. I'm never able to plan when I'll have energy - it's either there or not. I think that inability to be able to predict or plan to have some energy is, as you say pasara, a very hard thing to deal with.

I haven't found a way yet to deal with it either. I think I'm doing all the things you likely shouldn't do - like not going out with friends anymore and doing things, which begins to create some social anxiety - at least in my case is seemed to fuel it.

I hear what you're saying on the "physical aspect comes first". I think any of us who have had people or physicians tell us it's depression doing this are quick to say we're mentally creating this physical lack of energy. But as you say, and I agree, my physical issues are causing my mental.
Posted 1/24/2007 10:04 AM (GMT -6)
Jeannie and Sparker,

I have not been diagnosed with CFS, but have dealt with chronic severe fatigue, weakness and chronic pain since getting a head injury in a bike accident about a year and a half ago. I think you are right about two things. One, about "saving up" energy. My husband nags me about trying to plan and save up energy, and a speech and language pathologist I was working with was also trying to help me with "energy management." But I think you are right, it doesn't seem to work. I just have the energy I have at any given time and resting doesn't really affect it. EXCEPT of course, I can make it worse by exerting myself physically or mentally. I guess that is what I meant. Some days things are worse and some days a little better. I thought I was on a better day. Actually, I was on a better day, but it collapsed immediately. (By the way, the speech therapist didn't know what to do with me, since her methods didn't seem to be effective, so just dumped me suggesting I see a psychiatrist.) I guess I just want to believe that something is in my control, if I just know what to do. But I don't and it isn't.

Which brings me to the second thing you are right about: I haven't accepted this. When that idea comes into my mind I go into a deep depression, which I don't need. So I try to keep doing what I can to change things and keep in mind I am not where I was a year ago. It is hard though, and I think it is the fatigue which is the hardest to work around in day to day functioning.

I am also still looking for a specific diagnosis, since no one who is an "expert" will go on record saying all this is caused by "this." Without that I have to just keep going, searching for my own therapies, and having faith that something will shift and I will be able to recreate a life that brings me joy and satisfaction and a sense of meaning. When I got the wheelchair I felt disheartened, discouraged, "stomped on." I felt weak and humiliated, while at the same time relieved to be in it. It is funny, I don't feel any of those things when I see others in a wheelchair, but that is because it is someone else, not me. It can't be ME who needs the wheelchair. I should be the one pushing someone else. No matter how much I tell myself to be more practical and rational, I don't feel it in my heart. The rational, practical thoughts are fake. It is like I am an adult trying to convince a nine year old (my emotional self) that Santa Claus really does exist, that this is normal and okay for me if I just believe. But I don't. I can't accept this to be it. If it must be so, please tell me how.
Posted 1/25/2007 9:50 AM (GMT -6)
pasara, I think you have a complicated component to this whole thing which makes things worse - you don't have a diagnosis and I think that is one of the worst places to be. SO when you don't know what is wrong and no doc is telling you what is causing your symptoms, I think it makes it much harder to accept what is happening to you. I had been in diagnosis limo for quite some time and it was a rotten place to be - it makes a person question themselves, their symptoms, and their sanity and it makes the rollercoaster much worse. I think what you describe happening to yourself is fairly normal. I know for myself that when my fatigue and pain gets worse, my mood usually gets worse with it. The thing I have found that helped is that I am slowly redefining who I am now and finding new things I enjoy doing that don't take much energy (it took a while to get there though, and I am still doing some searching). I used to be a fitness nut and running, biking, and playing soccer were what I did in my free time. That has drastically changed now and it took me a while to grieve the loss of those things and find some new, more quieter interests. Hang in there and know that we are here for you. Take care
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