I do go to sleep and think I get sleep, but my sleep studies say otherwise. I wake up and I realize that somehow, I have to make it through another day. That almost brings me to tears.
I feed my daughter and my dogs. I feed myself so I can pop about 7 pills. I normally have some kind of doctors apt. that I go to and wonder why I am even there because they don't have a clue. There is always a new medicine for me to try. I feel like a guenia pig.
I do the best I can to take care of my daughter and give her some sort of mental or physical stimulation through the day. I normally look at the computer for about an hour. I also try to nap for 1 or 2 hours while parking my daughter in front of the tv, and I hate kids sitting in front of tv.
I normally wake up from my nap feeling worse with a headache. Then it is time to think about dinner. Thinking about that is horrible because I am really to exhausted to cook.
I am pretty much a zombie until about 7pm. That is when I feel the best, and I would stay up, but I know I have to get up again at 6 am and do it all over again. I lay down and it is hard to go to sleep because of my knee pain.
I feel like I never get anything productive done. Sometimes I cry because I can't keep my house clean, I can't work, and I am not anything like the mom or wife I want to be. I don't have any friends anymore...
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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I know exactly how you feel and have been there. I am so much better now, but am still so far behind in house cleaning, relationships, everything. Lyme is an overwhelming life vampire. But feeling better is wasted on me if I let all that get me down.
Under the circumstances, you are doing a great job. You could just surrender, but as you stated yourself, you are doing the best you can and that is all anyone can ask of theirself.
Give yourself credit for that. Keep trying.
Hugs and hope sent to you from me, Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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posted
I see so much variation it is hard to say, but "constants" (so far!) are:
Waking up feeling horrible-All my symptoms seem to get worse when I am still and when I am prone.
Then, after I'm up and moving, and have a little coffee, I have my best hours of the day.
After that, my day is unpredictable but always ends (thought at different times) with me being exhausted.
I'm 6 months into treatment, and thankfully sleep better now though still not through the night.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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You described my feeling/thoughts exactly. Our days sound very similar. I have a daughter also (11 years old) and have such a sense of loss over what I've missed doing with her. She and my husband do a lot of fun things together while I lay in bed.
This disease has put a tremendous strain on my marriage. I feel worthless and push my husband away. Then he gets angry (reasonably). My therapist pointed out this pattern. She's helped me through the roughest patches.
All I can say is that we have to keep trying different treatments and hope we find the one(s) that will make us better. Even when I've lost hope of ever being better, I trudge ahead because of my daughter.
Take care, Kim
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Toppers, that so describes my day to a tee!
I sleep for 3 hours then wake up and stay awake 1 to 2 hours waiting for my second Xanax to kick in before falling back alseep; and then if I am lucky I get 3 or 4 more hours. This is an improvement from when I could only get 3 hours a sleep a night.
Yes night time is when the palpitations and strange heart beats really kick in and the pain doubles at night too. Also this is when I notice muscle twitches, spasms, and vibrational sensations running through my body. No wonder it's hard to sleep!
In the morning I feel like pure crapola. The hardest thing is getting up. But once I get my shower, I feel much better and am ready to do a few things.
Later in the day, who knows how to predict when, especially lately, I have nausea and I am not even on antibiotics right now, so it must be the illness.
The fatigue can hit at any given moment. But is much better than a year ago when I started treatment. And lets don't forget the constant dull headache that is never ending.
I just do what I can do with what I am given on each day. Some days are better than others. I try to stay positive in a not so positive situation.
I was always a fighter, kind of tough in most situations. Its amazing how a chronic illness can practically drain that out of you along with everything else.
I know that one day all of this suffering will be over and so that keeps me going.
And it helps coming here and knowing you are not alone!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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