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Down again



I've been on the roller coaster this week. One day up, one day down. Sometimes up and down several times in the same day. Today, I'm in a down phase again.


The last 15 years have a lot of fighting for everything. Fighting to get lupus under control, fighting for custody of my kids, fighting to get out of a wheelchair (from lupus, not the stroke), now fighting to get back to as "normal" a life as I can, post stroke, fighting to come to terms withthe fact that I will have other strokes in the future and I will develop vascular dementia, all I can do is try to prolong it.


Today I am tired of fighting and wondering what the worth of trying to "get back to normal" really is. I'm really starting to think I tried to go back to work too soon and it is affecting my overall recovery.


It hasn't even been 90 days since my stroke. In hospital, I worked hard to make myself walk and talk, use my right hand, remember the words for things, and pass every possible evaluation they could throw at me with more than flying colors, scared that they'd make me stay in hospital longer, or go to a rehab facility. All I wanted was to go home and be with my kids and Sam.


Once I was at home, I did everything in my power to be able to show the doctors that I could handle going back to work part time. After I went back to work, I did everything in my power to prove that I could increase the time I spent in hte office until I hit at least 30 hours. That would garantee that they couldn't drop my insurance benefits, and though it would be tight, we could make the bills.


Now I seem to have plateaued. I just don't seem to be making any more progress and, frankly, it scares me a little.


I can walk without the cane, but I am a serious fall risk. The gyroscope in my head goes all sorts of ways, taking the whole world with it, at any time, whether or not I am standing/sitting, active or resting.


I can use my right hand, for short periods of time, but then it gets tired, hurts and gets clumbsy. Same with walking. I can't walk teh whole trip to the grocery store. My leg gets tired, burns and stops moving effectively.


Some time around 8:00 pm, the right side of my face will get "droopy" and talking will become more difficult. I still don't have lables for a lot things, at any time of the day, though I know what they do, and Sam and Logan have decided that it may be time to put lables on everything, so that I know the right word to call it. Great, for as long as I am not tired and letters/numbers/symbols still have meaning.


By 9:30 - 10:00 pm, I am no longer able to function and but myself to bed, week nights or week ends, and the closer I get to Friday, the more difficult it is to get up with teh alarm.


Even in the office, after about 90 minutes of actively working on something, it is time to stop for a while, as I let the headache goaway and things start making sense to me again. My desk chair starts to hurt me right around the 3 hour sitting mark.


Some days it is a reall struggle to force myself to go t othe fitness center or to take a walk with Sam. I just want to ignore doing it. After work, I just want to sleep. Dinners are getting put off until Sam or Logan decides that they will deal with it, and dishes tend to stack up longer than they should too. I'm just feeling to wiped out to face it.


Sam and Logan are getting frustrated with me. They start to snap and I start to cry. They don't believe I'm that upset at first, and when they discover that I am, they feel like total heels. I end up locking myself in my room and sleeping the rest of the evening/afternoon/day, continuing the cycle.


Dr. Mike has already doubled my zoloft. He doesn't want to change it again, or to put me on another medication at this time.


I don't know what to do to make things better. I don't even know if I want to do anything. I just want the angel to wrap her arms and wings around me, like she did in hospital, let me sleep and keep me safe. Every time I go to sleep, I look for that, but she isn't there any more.


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The will of God will never take you where the Grace of God will not protect you my dear friend and member!


Then, I remember it could always be worse, at that point I become thankful I can do what I do most of the time!


Lydi, you are blessed every day and one day you will feel better than yesterday! :big_grin:




I forgot to tell you: Read "Naught cat" Running with the wrong crowd, on the message board. I bet if you read that humor and Inspirational topic, you won't cry again for 5 days, a day for each of your cats! :big_grin:

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as you I can relate to the fighting but one way to be stronger is don't tell yourself . Even of you are tell yourself not to believe that. The mind is a wonderful tool. think positive. love ya

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i'm positive your angel is still with you. she may be having trouble with keeping up with you. just don't give up. maybe go back to your cane for a short time while you're working on balance and tiredness issues.like you said it's only been 90 days since your stroke.flowers.gif even though it may seem like an eternity, that's not very long esp. when you're doing so much. blessings lynn

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Lydia: this is a long, hard road to recovery. Ruthpill threaded this week on the progress William has made over the past two years and how slow recovery truely is. You should read her post and Sue's response. These are our pros.


We talk about the absolute need for rest and sleep. Your determination to get back to "normal" may in fact be hindering your progress. We talk often here of the one step forward, two steps back in recovery. And you are recognizing, realistically, the disabilities you are trying to overcome.


You must allow yourself some time. You are not going to be able to just jump right back into your old routine.

Go back to MC's posting about what your brain is telling you and really consider it. If you push too far, you will fall back and the work back up will be twice as hard. Please take some time to think about all this. Debbie

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I agree with Debbie, give yourself time to heal & don't try to rush back to old you. With the stroke old you died that day & now is the time to discover & love new you. take it slowly one day at a time. I decided to not to go back to work though for differet reasons & I am very content with that decision today though it was very hard in the begining since my ego was wrapped with what I did prestroke. but give your brain time to heal.



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Lydi, the whole recovery process is not a fast track. It is the the day-by-day-by-day getting enough sleep, eating healthy food,doing your exercises, spending some time praying or meditating, that is the path. You cannot just do what you used to do and expect recovery. It simply doesn't happen that way.


First think about why you went back to work apart from the insurance, for the satisfaction of working, using your talents and abilities? I guess for the pay too. You may have to just quietly do your work and come home until you build up some strength, you don't have enough energy to do any more.


At home,you have your husband and son in partnership with you. Have a daily routine so you know what you need to do and what your partners are doing. Dinner will not be a chore if you plan a week's menus. This makes shopping easier and cooking much easier, no decisions to make, you know what you are doing.


Wish there was an angel here sometimes, to sweep me up and away from here but I am a caregiver and I have to BE the angel to Ray, just as you do to your husband and Logan.



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