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Chronic Fatigue Syndrome
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Date Joined Nov 2006
Total Posts : 1052
Posted 5/27/2007 12:03 PM (GMT -6)
The things we do just for are kids lol are killing me. I have been putting in a new clutch on the old ford tow rig. Trying really hard not to over do it but to late now as every muscle in my body is in pain.
I just went out and feed the horses and man-a-live I feel like old man and ready to go back to bed, but yet I still got to finsh up the small stuff on the truck so I can haul her horse to horse camp on tuesday for the week and the long drive there and back again. Some how some way I got to get it done today just so I have at lease one day to rest but I now it's going to be a big time crash for me and to recoup, even just writing this down is hurting me so much and I feel like going back to bed big time. I really hate this crap what would normally take a day to do can now take up to a week for me.
And I really hate it when I do try to get things done around here I have to take a nap and rest, my wife saids how miny naps do you need in a day and it's no wonder nothing gets done around here your allways napping all day.
Guess I just need to vent, but I still got to do the truck AHHHHHHHHHHH
Happyness is sitting around a warm campfire with no worry's or cares as day turn's to night.
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Date Joined Dec 2006
Total Posts : 424
Posted 5/27/2007 4:24 PM (GMT -6)
Yikes! I'm so sorry to hear of your pain - not just the physical but sounds like you're going through the emotional distress that the limitations of cfs bring with it too. I have often grieved over how long it takes me to do things. Take packing for instance (we have moved a lot). I will spend a week at it, and my husband will come and do in a day do what took me a week. Sigh.
From what your wife said to you, it sounds like she really doesn't understand what you are going through and that naps are not by choice, but by necessity. Sometimes a woman/wife can feel abandoned when her expectations aren't met even if there is a legitimate reason for her demands not getting attention. We women tend to interpret things a certain way like that. So as a woman, I would say it might be helpful to say something like: "I'm so sorry if you feel abandoned or neglected. I try so hard to keep up with things but the pain becomes almost unbearable, and if I don't nap, I will be even more incapacitated to help you with things. I really want to do all I can to support you, but I also really need your support right now too." Invite her to share how she feels by your napping etc. It might make you feel angry or misunderstood etc., if she responds the same way, but remember she is just sharing feelings and needs to get that off her chest. If she sounds accusative, try responding with love and empathy. It's likely that once she has her feelings validated and you give her this time of being validated and nurtured, that she will then be able to give you more empathy as well.
I really don't know your wife at all, but I'm just speaking according to what I've observed in my own seven years of marriage - as hubby and I both are dealing with issues. When we were first married he wanted me to do all the cooking and cleaning, and I was there thinking "What nerve! I can barely keep up with my own needs. If anything, HE should be stepping in and cleaning things FOR me!" But over time, AS HE BEGAN TO UNDERSTAND WHAT I GO THROUGH, his expectations changed and so did his perceptions.
Likewise, over time, if your wife can be educated and will take an interest in what you actually suffer, she will realize you are not negligent, but qutie the opposite. Your behavior is more comparable to something heroic! Each day you get out of bed and make the choice to use what spunk you do have to take care of your family - you have done more in that day than many regular folks do in a week. I mean, if you think of the price you pay and the work it takes you to get things done, you're the one whose outrunning all the other folks who dont' have fatigue and pain to fight through for the inches they gain in a day. You should feel so proud of yourself for how you keep right on trucking, and obviously you are a very caring dad too. Your wife probably loves you very much but maybe she doesn't know how to deal with your illness, and that's why it is coming out with comments like the one you mentioned above? An illness really is a family affair as it affects everyone. But if you can reach out in compassion, it can go a long way to break through any defensiveness she might be feeling and hopefully you two start really seeing what the other needs to cope with the cfs.
Anyway, we all have times where we have to push ourselves beyond what we should. Life doesn't stop just because we hurt. But it does give times of reprieve. So once this is done, you can rest up. And that means rest without guilt. You deserve it!! You've done great!
All the best, manyembers
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Date Joined Jul 2005
Total Posts : 5403
Posted 5/27/2007 7:52 PM (GMT -6)
Wow, freezing, I could have written your post today - same issues, just different obligations for kids/family. I'm wanting my kids to have a good summer and I'm also suffering from ongoing guilt of the many times I tell them "no, I'm too tired". So, today we went shopping and stocked up on fun outdoor summer stuff and since we live over an hour away from the nearest city, we ended up running a lot of other errands too. Even though my hubby went along, I could barely function by the time we got home - my body was shaking and totally exhausted. I am just so upset because overdoing it today could send me crashing for weeks. IT's scary not to know how long this will affect me. I guess I needed to vent too.
Hang in there freezing and I hope you don't crash too hard. This is hard on our spouses and hard on our relationships. My husband is usually very supportive, but I can tell he's irritated and stressed right now because our house is a disaster and since I am crashing he's feeling the pressure that he's going to be the one to pick up the slack and then I get into the lovely guilt cycle.
This just isn't easy - believe me when I say I can really relate to what you are going through. Try to get some rest.
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily;
; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops
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