What the?@?
I was trying to remember the word I substitute for the F word when I'm cussing, figured I'd recall it soon enough and sure enough I did. My word is FRUITCAKE. Let's put it to use...
I'd like to talk about the FRUITCAKING doctors who FRUITCAKE up our health when we are paying a FRUITCAKING fortune in the hopes they will make us BETTER!
I have been stressing about a new phase in my health journey. I have been experiencing bouts of dizzyness and blurred vision, increased lapses in memory and reduced cognitive function. Got really concerned early this week when I'm sitting in a meeting and suddenly I can't make out what is on my computer screen. I look up and I can't discern the features of the person sitting across from me. What the?!? I'm rubbing my eyes and blinking over and over and inside I an FREAKING OUT! My God I'm going blind! I can't afford to go blind. I have my son to take care of. Heck this was 8pm and I had to drive myself home! After a few miuntes the vision cleared up but my stress level remained sky high.
Now let's back up the the previous health phase. In this phase my body switched from sleeping 15-20 hrs per day to not sleeping at all. For some time now I've been struggling to get 2-3 hrs sleep per night, and when I do sleep its really poor quality so each day I get progressively more exhausted. More pain, more trouble functioning .. you know the drill. Weekends don't help either because I will be in bed all day and not sleep a wink.
So, I discussed it with my doc and he prescribed a sleep aid, DORMICUM. I found it helped me to get about 4 hrs sleep at a stretch but did not knock me out cold so I was quite happy with it. Until yesterday when it finally occurred to me to do my research (sometimes we CSFer's are not so smart..blame it on the brain fog). Key findings...
- profoundly potent (CFSer's you undertand how intolerant we are to meds ...potent is not our friend)
- highly additcive / significant withdrawal symptoms ..(did I tell you about the time my son had a drugs awareness presentation at school and came home and asked if I was a drug addict? do I REALLY need to actually become one?)
- causes cognitive impariment, loss of memory, blurred vision, dizzyness (isn't this what I'm trying to FIX?)
- is not used for patients who have trouble staying asleep through the night; causes deterioration in sleep quality. (again .. am I not trying to FIX this?)
- raises blood pressure (I am under treatment for high blood pressure, same doc)
- residual 'hangover' effects, such as sleepiness and impaired psychomotor and cognitive functions, may persist into the next day. This may impair the ability of users to drive safely and may increase the risk of falls (seriously..we have coordination issues to begin with, do we need the extra help?)
This is the same doc for whom I prepared a dossier of information about ME/CFS and a written history of my health issues .. same doc who is treating me for high blood pressure .. who I have visited multiple times because I'm unable to think straight or walk straight or drive safely...
Now you tell me if this doc does not deserve a serious FRUTICAKING cussing! Problem is I have to pay him for the privilege of telling him I think he and all his peers are FRUITCAKING MORONS!
For now I will satisfy myself with saying I have had it with these FRUITCAKING doctors who prescribe without thinking, who lead us down the FRUITCAKING garden path and take our money to make us FRUITCAKING sicker. FRUITCAKE THEM ALL!
Needless to say the rest of that prescription is getting tossed.
[exhaling...] I feel better now. Sleep deprived ..but better.
I'd like to talk about the FRUITCAKING doctors who FRUITCAKE up our health when we are paying a FRUITCAKING fortune in the hopes they will make us BETTER!
I have been stressing about a new phase in my health journey. I have been experiencing bouts of dizzyness and blurred vision, increased lapses in memory and reduced cognitive function. Got really concerned early this week when I'm sitting in a meeting and suddenly I can't make out what is on my computer screen. I look up and I can't discern the features of the person sitting across from me. What the?!? I'm rubbing my eyes and blinking over and over and inside I an FREAKING OUT! My God I'm going blind! I can't afford to go blind. I have my son to take care of. Heck this was 8pm and I had to drive myself home! After a few miuntes the vision cleared up but my stress level remained sky high.
Now let's back up the the previous health phase. In this phase my body switched from sleeping 15-20 hrs per day to not sleeping at all. For some time now I've been struggling to get 2-3 hrs sleep per night, and when I do sleep its really poor quality so each day I get progressively more exhausted. More pain, more trouble functioning .. you know the drill. Weekends don't help either because I will be in bed all day and not sleep a wink.
So, I discussed it with my doc and he prescribed a sleep aid, DORMICUM. I found it helped me to get about 4 hrs sleep at a stretch but did not knock me out cold so I was quite happy with it. Until yesterday when it finally occurred to me to do my research (sometimes we CSFer's are not so smart..blame it on the brain fog). Key findings...
- profoundly potent (CFSer's you undertand how intolerant we are to meds ...potent is not our friend)
- highly additcive / significant withdrawal symptoms ..(did I tell you about the time my son had a drugs awareness presentation at school and came home and asked if I was a drug addict? do I REALLY need to actually become one?)
- causes cognitive impariment, loss of memory, blurred vision, dizzyness (isn't this what I'm trying to FIX?)
- is not used for patients who have trouble staying asleep through the night; causes deterioration in sleep quality. (again .. am I not trying to FIX this?)
- raises blood pressure (I am under treatment for high blood pressure, same doc)
- residual 'hangover' effects, such as sleepiness and impaired psychomotor and cognitive functions, may persist into the next day. This may impair the ability of users to drive safely and may increase the risk of falls (seriously..we have coordination issues to begin with, do we need the extra help?)
This is the same doc for whom I prepared a dossier of information about ME/CFS and a written history of my health issues .. same doc who is treating me for high blood pressure .. who I have visited multiple times because I'm unable to think straight or walk straight or drive safely...
Now you tell me if this doc does not deserve a serious FRUTICAKING cussing! Problem is I have to pay him for the privilege of telling him I think he and all his peers are FRUITCAKING MORONS!
For now I will satisfy myself with saying I have had it with these FRUITCAKING doctors who prescribe without thinking, who lead us down the FRUITCAKING garden path and take our money to make us FRUITCAKING sicker. FRUITCAKE THEM ALL!
Needless to say the rest of that prescription is getting tossed.
[exhaling...] I feel better now. Sleep deprived ..but better.
Replies
It\'s a delicate balance.............great vent by the way! Journals are great for letting out a lot of fruitcake........xoxox. When I was in one of my first big bad insomnia phases after being in hypersleep for so long I didn\'t know what to do........I limped through and finally went to get help. I took Ambien which allowed me 4 hours of sleep. They increased it and I was getting 7-8 hours of sleep at night. I desperately needed the rest. But Ambien was not a good chemical fit for me. After a brief period taking it with these good sleep results, I started having horrible terrifying nightmares. That was a huge negative. I also began feeling unsure of when I was awake or not.......I was dreaming that I was awake during dreams and then so foggy when awake that I wasn\'t sure what was going on. It was a scary time and I asked and was taken off that med asap.........
So we next tried Lunesta. That helped me very much..........with this doctor I got a sleep study done. I had all kinds of pain going on. I couldn\'lt sleep cause the pain kept WAKING me back up. I would lie on my back and wake with lower back pain, turn to my right hip and wake with throbbing pain in my right hip, turn to my left hip and again wake up due to the severe pain in that hip........I was doing quarter turns all night long. No wonder I couldn\'t rest. The pain levels were through the roof. My level of physical, mental and all over life activity was way too high for someone with my conditions. I did not truly understand how ILL I was. I was so tough about pushing through, but so slow to understand how much I needed to change. I overdid all the time and I expected my sick body to want to remember and perform at the same level that existed pre sick. I may not have thought of it exactly like that, but I know in many ways that was my goal........to be who I was, do what I could do when I wanted and so on...........I was being way too hard on my body, I just didn\'t understand. Doctors are just like everything else, it takes some trial and error, some guinea pig time cause our systems are sensitive........it took me a long time to sort things out....................to learn better how to manage life.
If this doctor is not the right one for you, then perhaps it is time for you to look for better. You need the best on your personal team to lend you support. A doctor who doesn\'t act like they know all the answers but is willing to think outside the box in care of you is a goldmine.
Back to immediate concerns, your blood pressure sounds like it is wonky.......that is an immediate concern. To find some inner calm, some peace.........do you need to take a sabbatical? Is that an option or does that seem unthinkable? Do you have short term disability insurance via your company that would allow you to do that?
Maybe you need to not work and focus on your health...........not trying to upset you, just wondering if you are expecting way too much of your body and you\'re so tired and sick that it is harder and harder to figure out what to do, how to do because again............angel you are sick and tired.........you are tired and sick............keeping you in my prayers, and i admire your sass......your feisty side........you are a great ......world class venter........we gotta let this stuff out...........bottlenecking is bad ..........big soft hugs.........xoxoox
Hi Serce
Thanks for the advice and insight. BTW : I am goign thru the nightmare thing right now..vivid, fullaction nightmares that get so physical I sometimes wake myself up. Either way I wake up absolutely exhausted. Ah well.
I like this doc, plus he\'s downstairs from my office. I tend to avoid doctors visits when actually getting there is too much of a hassle. So, I\'ll keep my fruitcakes to myself and play nice...
re work .. I lost my job 2 years ago and was too ill to do anything about it for 8 months. I was fairly well paid and had the lifestyle to go with it. So when the income dried up, the bills did not..house, car, prep school, karate.. you get the pic. If you convert our social security benefit to US$ it woudl equate to roughly $40 per month, and our cost of living is way higher than yours. In short I can\'t afford to not work.
There is also the mental side, I\'m going stir crazy right now. I have worked on my home intermittently for years, it helps take the edge off my frustration at not being able to do the things I want to do. Have been too weak to do anything since December and its getting to me. I find I\'m getting moodier, more frustrated. I NEED TO BE DOING SOMETHING! So the job is a godsend for me right now.
So we take it one day at a time...