Anger and depression are really two sides of the same coin. At least in my case. Instead of getting angry I get depressed. I'm having a bad day today. It took a week of resting to get to the point where I could circumnavigate my back yard to inspect my flowers. Then my husband took me for a ride while he dropped off some sound equipment. The trip was roughly and hour and a half. We then ate dinner on the way home. We ate out on the patio of the resteraunt so that we could enjoy the nice weather. I watched the sparrows hopping around under the tables hunting for food scraps. I admired the lilac bushes that were oddly still in bloom (mine hit their peak a week ago and now look pretty crappy). We got home and I was tired. I sat and finished my book. After one hour of reading my eyes hurt and I could no longer focus them and everything was blurry. I sat down to watch episodes of Glee on Netflix. Hubby decided that we should go out for ice cream. I was tired but in my desperate need for normalcy and companionship I went. This would be nice. Go out for ice cream. I knew it was going to keep me up half the night but I didn't care. Hubby decided to take noisy car. He loves this thing. It is a '55 Bel Aire that he built himself. He races it on the drag strip. Back when I was healthy I didn't mind riding in it once in a while. Now that I'm sick it is not my preferred mode of transport. It is uncomfortable. It is loud. It vibrates horribly. It is loud. I can't talk because it hurts my throat to yell that loud. Did I mention it is loud??
The day had gone pretty well so far. But hubby decided that he wanted to cruse around town with me in the loud car. Not what I wanted to do. Not in that car. I don't do well in that car. But he never asked me if it was okay. After two laps around town I can no longer keep my eyes open. I'm nodding off. This is a car that is so loud that you can't hold a conversation in it and I'm falling asleep. We finally get back to the house and now I can't walk and can't go up steps. I beach myself on the couch and wait for the sugar to run out so I can sleep for reals. I'm up until 4am. Birds are singing when I finally hit the sack.
Today I'm miserable. I can't move again. My arms and legs feel like they are filled with lead and I can't move them. He wants me to sort coins but it is too much effort. He wants me to clean my stuff of the coffee table. I do it but it is a Herculean effort. I try to make pesto but I can't find the parts to the food processor. It tires me out completely just looking in one cabinet and a drawer and I have to go lie down. Now I'm getting irritated. I can't even make god damn pesto. Oil, basil, nuts, garlic and Parmesan. I want to yell and throw things. Someone moved the oil I just put out. No one wants to help find the lid so the processor works. Hubby looks around and gives up. I'm so damn frustrated and tired at this point I just lie down on the couch and leave him to it. My son comes home and walks into the middle of this. He starts looking. Hubby is trying to rig the processor so that it will work without the lid instead of looking for the lid which has to be in a cabinet since he put it away!! I'm just getting more ticked off. I have such a short fuse when I'm this tired. I feel like no one appreciates the huge effort it takes me to do the simplest tasks when I'm this tired. My son finds the lid and I rise from the couch to make the pesto. I don't have enough basil, the Parmesan falls out the tub in a big clump so there is too much cheese in the processor. If I was well I would fish some of it out but now I'm too tired to care. I blend the stuff together. It is the wrong color. I've added too much oil. The ingredients are way out of balance. Too much oil, too much cheese, not enough basil. Eh, I'll just use it as a marinade for the chicken and not put it on the table for a sauce like I normally do. I drop the mess in a sieve to get some of the oil to drain off but it has done some weird chemical bindy thing and turned into a huge yellowish oil chunk with green flecks in it. Totally unappetising. Dinner comes out okay. My son made risotto to go with the grilled pesto chicken.
After dinner I sit out on the deck by myself. I'm miserable. I'm short tempered. I'm tired. I'm hot. I feel like crap. I have no energy. I'm berating myself for doing too much yesterday and setting myself back so badly. I start crying. I wish my husband would come and sit with me so we could talk. I wish he would come and comfort me. I wish he would hold me and tell me that this will pass. Instead I cry by myself. I am so angry!
I go inside and he is playing video games with my son. I settle down for a night in front of the tube. First a movie, then a stand up comedian, then a few episodes of X-Files. Now I'm depressed. It is hot and humid out and this combined with the CFS makes me suffer horribly. My body can't handle the heat and humidity. I feel even crappier than I did. My energy has returned a little so I'm sitting up instead of lying down like earlier.
Then the best part of my day happens: hubby comes in on his way to bed and asks me if this is what our marriage is going to be like from now on. He isn't having any fun. He doesn't want to sit and watch TV all day with me (I've never asked or expected this). I say he could have come out on the deck with me and he says there are too many mosquitoes. I tell him that I meant hours ago when I was out there after dinner. He counters that he wants to be able to do fun stuff. I ask him what and he says travel, bungee jump, fun stuff. Of course we didn't do any of that before I got sick and I would never ever bungee jump. We never traveled anywhere cuz he was too damn cheap. All I heard about was how expensive it is to rent a room, eat out, take a taxi.... Even if we had a fun trip he was always trying to do things on the cheap.
So I cried some more. I still feel crappy. My stomach is upset even though I took Prilosec earlier. I'm hot and miserable. I swing between being angry at myself, angry at him, angry at CFS and being depressed. So much for getting a hug. This sucks. All I want to do is cry.
Monday, May 30, 2011
Thursday, May 26, 2011
Can't Get There From Here
I don't know the real origin of this saying. I was told it was a one line joke from Maine and people always repeat it with a Maine drawl, "Ya can't get theya frum heya".
The thing I've been pondering all night is handicapped access. I happened across a news article that had been posted to FB regarding the definition of disabled according to the ADA. Once done with the newspaper article I went on to the ADA web site and started reading about access to medical services, social services and recreational facilities.
Now that I travel outside of the house mostly by wheelchair access is becoming an issue for me: doors without automatic openers; getting stuck on a raised threshold; no HC parking available. Or worse yet, my arch nemesis STAIRS. I am beginning to hate stairs. Since my crash four weeks ago I haven't been able to navigate stairs even on good days.
I am realizing how many of my service providers have single or multiple flights of stairs that have to be navigated to access their offices. These are people that are renting in older pre 1960 buildings. So far I've counted my dentist, my sleep dentist (he takes care of my anti snoring device), my masseuse and my psychologist. They have two short flights, six long flights, one short flight and two medium flights with no hand rails, respectively.
Although my sleep dentist has the longest stair case, my shrink's office is actually the worst for me since I see her weekly. Her office is on the second floor of an old Victorian house. There is no HC spot which means sometimes I have to beach my car in the road, traverse the lot to the first set of steps up to the front lawn. Then I have the stair case to the front door. A step up into the house and then two flights up with no handrail. I actually broke one of the fancy balusters when I was trying to hang on so I wouldn't loose my balance. So far I've had my husband help me navigate them on bad days. I have to go slow and I stop often. I sometimes have to hold on to him for balance particularly on the flights with no railings. A couple of times he even got behind me and shoved me up the stairs.
Then three weeks ago I was on my own. I knew I wasn't doing well at the base of the stairs but thought I could make it up. I just figured I take it one step at a time. By the time I was half way up the second flight I was crawling on my hands and knees. The staircase is steep and narrow so this was easier than it sounds. About four steps from the top I thought I wouldn't make it but it was even worse to turn around and go back so after a rest I took another step. Rest. Step. Rest. Step. When I hit the landing I just propped myself up against the railing hoping the thing wouldn't collapse under my weight. I now had full on head bobbing, herky jerky mode. Luckily her door is at the top of the stairs so after another rest I lunged at it. Opened it and I must have been late because she came out into the waiting room. I was now in tears and couldn't talk or move. She came over and helped me walk to a chair. I needed her to help me balance so I didn't fall over just walking. We ended up having our session in her waiting room. She had to drag the furniture around and set me up. She got to see me at my worst. Bobbing and jerking all over the place, unable to take my own coat off or even talk very well. She was upset but did her best to accommodate me. I had to call my husband to come rescue me. I was literally stuck on the second floor of the building and needed my 6'2" strong hubby to help me back down the stairs. Thankfully he had the presence of mind to beach my car on the sidewalk right in front of the front door with the passenger door open so I had the shortest distance to travel possible.
Well, the next week wasn't any better. This time I knew better than to attempt the stairs. I sent my son up to let her know I was down in the lobby. There were two chairs there which were comfy but there was little privacy and it was my job to listen for people coming down the stairs. The other issue is that the lobby is unheated and that particular day turned out to be unseasonably cold. We both froze and she decided that was a bad place to have our session.
This week when my appointment came I knew I couldn't even drive myself over there never mind tackle the stairs on my own so I called up to cancel. She called me at home and we tried the phone session. I hated this option even more than the lobby option. It was just too intimate for me. I felt like I was talking to my mom instead of my shrink. When we got to the end of the session she told me that in the future if I couldn't make it to the office or up the stairs either I would have to do the session by phone or give her 24 hours notice or she would have to charge me for the session. I understand this is her policy and she gives it out in written form during the first session but we had talked about my special circumstances and she indicated that she would be more flexible with me due to the unpredictable nature of the CFS. I guess this was fine as long as I didn't call her on it. Now that I've taken advantage of the offer three weeks in a row she is drawing a line in the sand.
I find this a tad irritating. I get the fact that she is running a business and that she has policies. Trouble is that CFS is so unpredictable and she has STAIRS. Lots of steep nasty stairs with no railings. If she didn't have stairs there wouldn't be an issue with me making it to my appointments.
Now one of the interesting things I was reading in the ADA site is that disabled customers have a right to the same treatment as a fully abled person. This means access to the exact same services in the exact same manner. In other words she would have to either modify the building, move to one that is ADA compliant or provide an alternate meeting space that I can access and that would provide comfort and privacy for our sessions.
Now I'm in a moral quandary. I like her. We have a long history together and we have worked well together in the past. However, I don't like the fact that she is becoming inflexible and I'm not comfortable with the phone sessions. But what do I do? I could report her. But if I report her then to be fair I should also report the other providers. Two of them are even in a town owned building which is considered even more egregious than a private building being inaccessible. I like all of them and wish to use their services in the future. Why are so many of them in buildings that have stairs? This is awful! If I don't get better am I going to have to get a new dentist or a new shrink? I know I'm going to have to cancel my upcoming sleep dentist appointment. There is no way even if hubby pushed and shoved me that I would make it up three floors which is six flights of stairs. I had trouble with them last summer and I was doing way better then. I just don't know what to do. Why do I have to give up practitioners that it took me a while to find, practitioners that I like and have been seeing for years because they have chosen to rent in ADA non compliant offices? This isn't fair! Why do I have to be the bad guy here?? Why do I even feel guilty about this?? All I know is that I can't get there from here.
The thing I've been pondering all night is handicapped access. I happened across a news article that had been posted to FB regarding the definition of disabled according to the ADA. Once done with the newspaper article I went on to the ADA web site and started reading about access to medical services, social services and recreational facilities.
Now that I travel outside of the house mostly by wheelchair access is becoming an issue for me: doors without automatic openers; getting stuck on a raised threshold; no HC parking available. Or worse yet, my arch nemesis STAIRS. I am beginning to hate stairs. Since my crash four weeks ago I haven't been able to navigate stairs even on good days.
I am realizing how many of my service providers have single or multiple flights of stairs that have to be navigated to access their offices. These are people that are renting in older pre 1960 buildings. So far I've counted my dentist, my sleep dentist (he takes care of my anti snoring device), my masseuse and my psychologist. They have two short flights, six long flights, one short flight and two medium flights with no hand rails, respectively.
Although my sleep dentist has the longest stair case, my shrink's office is actually the worst for me since I see her weekly. Her office is on the second floor of an old Victorian house. There is no HC spot which means sometimes I have to beach my car in the road, traverse the lot to the first set of steps up to the front lawn. Then I have the stair case to the front door. A step up into the house and then two flights up with no handrail. I actually broke one of the fancy balusters when I was trying to hang on so I wouldn't loose my balance. So far I've had my husband help me navigate them on bad days. I have to go slow and I stop often. I sometimes have to hold on to him for balance particularly on the flights with no railings. A couple of times he even got behind me and shoved me up the stairs.
Then three weeks ago I was on my own. I knew I wasn't doing well at the base of the stairs but thought I could make it up. I just figured I take it one step at a time. By the time I was half way up the second flight I was crawling on my hands and knees. The staircase is steep and narrow so this was easier than it sounds. About four steps from the top I thought I wouldn't make it but it was even worse to turn around and go back so after a rest I took another step. Rest. Step. Rest. Step. When I hit the landing I just propped myself up against the railing hoping the thing wouldn't collapse under my weight. I now had full on head bobbing, herky jerky mode. Luckily her door is at the top of the stairs so after another rest I lunged at it. Opened it and I must have been late because she came out into the waiting room. I was now in tears and couldn't talk or move. She came over and helped me walk to a chair. I needed her to help me balance so I didn't fall over just walking. We ended up having our session in her waiting room. She had to drag the furniture around and set me up. She got to see me at my worst. Bobbing and jerking all over the place, unable to take my own coat off or even talk very well. She was upset but did her best to accommodate me. I had to call my husband to come rescue me. I was literally stuck on the second floor of the building and needed my 6'2" strong hubby to help me back down the stairs. Thankfully he had the presence of mind to beach my car on the sidewalk right in front of the front door with the passenger door open so I had the shortest distance to travel possible.
Well, the next week wasn't any better. This time I knew better than to attempt the stairs. I sent my son up to let her know I was down in the lobby. There were two chairs there which were comfy but there was little privacy and it was my job to listen for people coming down the stairs. The other issue is that the lobby is unheated and that particular day turned out to be unseasonably cold. We both froze and she decided that was a bad place to have our session.
This week when my appointment came I knew I couldn't even drive myself over there never mind tackle the stairs on my own so I called up to cancel. She called me at home and we tried the phone session. I hated this option even more than the lobby option. It was just too intimate for me. I felt like I was talking to my mom instead of my shrink. When we got to the end of the session she told me that in the future if I couldn't make it to the office or up the stairs either I would have to do the session by phone or give her 24 hours notice or she would have to charge me for the session. I understand this is her policy and she gives it out in written form during the first session but we had talked about my special circumstances and she indicated that she would be more flexible with me due to the unpredictable nature of the CFS. I guess this was fine as long as I didn't call her on it. Now that I've taken advantage of the offer three weeks in a row she is drawing a line in the sand.
I find this a tad irritating. I get the fact that she is running a business and that she has policies. Trouble is that CFS is so unpredictable and she has STAIRS. Lots of steep nasty stairs with no railings. If she didn't have stairs there wouldn't be an issue with me making it to my appointments.
Now one of the interesting things I was reading in the ADA site is that disabled customers have a right to the same treatment as a fully abled person. This means access to the exact same services in the exact same manner. In other words she would have to either modify the building, move to one that is ADA compliant or provide an alternate meeting space that I can access and that would provide comfort and privacy for our sessions.
Now I'm in a moral quandary. I like her. We have a long history together and we have worked well together in the past. However, I don't like the fact that she is becoming inflexible and I'm not comfortable with the phone sessions. But what do I do? I could report her. But if I report her then to be fair I should also report the other providers. Two of them are even in a town owned building which is considered even more egregious than a private building being inaccessible. I like all of them and wish to use their services in the future. Why are so many of them in buildings that have stairs? This is awful! If I don't get better am I going to have to get a new dentist or a new shrink? I know I'm going to have to cancel my upcoming sleep dentist appointment. There is no way even if hubby pushed and shoved me that I would make it up three floors which is six flights of stairs. I had trouble with them last summer and I was doing way better then. I just don't know what to do. Why do I have to give up practitioners that it took me a while to find, practitioners that I like and have been seeing for years because they have chosen to rent in ADA non compliant offices? This isn't fair! Why do I have to be the bad guy here?? Why do I even feel guilty about this?? All I know is that I can't get there from here.
Out To Lunch
I decided (well my body crapping out had a lot to do with the decision) that I needed to extend my vacation beyond Monday and have successfully done little other than make dinner for three days running. I did make it out onto the deck today with my book and managed to read a little bit.
I seem to be in crash mode so I have little choice in the matter but to rest a lot. In the meantime I've enjoyed The Scarlet Pimpernel, Eureka, Farscape and Spongebob on Netflix. Reading chunks of The Help (I'm sure I'm going to have to reread it since every time I pick the book up I find that I've already forgotten what I read the day before and I have to backtrack a few pages to pick up the story line again). Lots of staring off into space. I've managed to watch Days of Our Lives everyday this week.
It is odd watching this soap. I remember watching it with my Mum when I stayed home sick from school when I was a kid. She doesn't remember but I thought I was being all grown up watching a special show with her. I think of her every time I see the hourglass at the end of the show.
I'm doing pretty well at ignoring back pain, neck pain, joint pain, headache, abdominal pain and the fact that I seem to be perpetually bringing up stomach acid. It is a wonder that my voice works at all. My brain has been checking out on me as well. I'm having hours where I can't think straight and all I can do is stare off into space or just lie down in bed. I never feel like I fall asleep but I do manage to loose all sense of time during these episodes. I might dose off but I'm never sure.
I've decided that I'm going to take the rest of the week off as well. Being my usual productive self I've been putting a to-do list together for myself for when I feel better. Of course I sit with it in my lap and can't remember the pressing item I was going to write down on it.
It has been great to be able to sit outside. Some things I've learned: trees are not the same color of green but range from almost yellow to almost navy blue; there is a type of fly that likes the flower heads on the yellow weeds that have sprung up in my flower bed, the flys behave like bees hoping from flower to flower; the bumble bee hive is back under my deck; there are several cardinal pairs living close by; a male mallard thinks my closed swimming pool is a nice duck pond and the neighbors cats stay away when I'm out on the deck.
I'm seriously considering trying out my new tramadol med. I'm really not sure if I'm going to be able to sleep tonight because of the pain. I'm always scared to try new pain meds. I never know how I'm going to react to them. Thing is my back hurts pretty badly tonight. Not sure I'm going to be able to ignore it once I stop distracting myself..... Let the vacation continue!!
I seem to be in crash mode so I have little choice in the matter but to rest a lot. In the meantime I've enjoyed The Scarlet Pimpernel, Eureka, Farscape and Spongebob on Netflix. Reading chunks of The Help (I'm sure I'm going to have to reread it since every time I pick the book up I find that I've already forgotten what I read the day before and I have to backtrack a few pages to pick up the story line again). Lots of staring off into space. I've managed to watch Days of Our Lives everyday this week.
It is odd watching this soap. I remember watching it with my Mum when I stayed home sick from school when I was a kid. She doesn't remember but I thought I was being all grown up watching a special show with her. I think of her every time I see the hourglass at the end of the show.
I'm doing pretty well at ignoring back pain, neck pain, joint pain, headache, abdominal pain and the fact that I seem to be perpetually bringing up stomach acid. It is a wonder that my voice works at all. My brain has been checking out on me as well. I'm having hours where I can't think straight and all I can do is stare off into space or just lie down in bed. I never feel like I fall asleep but I do manage to loose all sense of time during these episodes. I might dose off but I'm never sure.
I've decided that I'm going to take the rest of the week off as well. Being my usual productive self I've been putting a to-do list together for myself for when I feel better. Of course I sit with it in my lap and can't remember the pressing item I was going to write down on it.
It has been great to be able to sit outside. Some things I've learned: trees are not the same color of green but range from almost yellow to almost navy blue; there is a type of fly that likes the flower heads on the yellow weeds that have sprung up in my flower bed, the flys behave like bees hoping from flower to flower; the bumble bee hive is back under my deck; there are several cardinal pairs living close by; a male mallard thinks my closed swimming pool is a nice duck pond and the neighbors cats stay away when I'm out on the deck.
I'm seriously considering trying out my new tramadol med. I'm really not sure if I'm going to be able to sleep tonight because of the pain. I'm always scared to try new pain meds. I never know how I'm going to react to them. Thing is my back hurts pretty badly tonight. Not sure I'm going to be able to ignore it once I stop distracting myself..... Let the vacation continue!!
Wednesday, May 25, 2011
Monday, May 23, 2011
Monday is a Holiday
My affadavit has been noterized and got put in the mail to the lawyer on Saturday. Both the kid and hubby are off at work all day tomorrow. I have the house to myself and no doctor appointments. I have nothing to do for the first time in months. I'm taking the day off. I don't even have to take a shower since I did that today. I'm going to sit and read all day. No writing. No cleaning. No doctors. No editing. No emails. A quick crock pot dinner is my only obligation tomorrow. Instead of working I'm going to put on some new CDs I got from a good friend and curl up with my new book The Help and spend as many hours as I can reading. When my brain is fried from that I'll watch some X-Files or Eureka on Netflix. I'm looking forward to my Monday Holiday. I might even take a nap.
Thursday, May 19, 2011
CFS Overload
I've been avoiding my own blog. Wish I could say it was the nasty relapse I've had due to The Diet From Hell (I seem to be finally recovering a bit. I'm no longer totally confined to the prone position.). Wish I could say it is because I am using all my brain power editing my affidavit for my LTD claim. While it is true that I'm recovering from a nasty crash and its true that I'm spending all my functional hours editing it is also true that I've been actively avoiding my own blog.
May is CFS awareness month. Being an activist by nature I joined in several actions. I wrote testimony for the CFSAC meeting. I 'liked' lots of CFS pages on FB. Friended lots of new people on FB that have found me via the CFS network on there. I watched most of the CFSAC meetings. I was posting CFS facts daily on FB.
To be brutally honest I'm CFSed out. I don't want to think about it any more. I'm trying to document the course of my illness in my affidavit. I'm seeing way too many angry CFS posts on FB. Yes, I actually hid some of the new 'friends'. I want to think about something else. I want to not have to write about it or read about it anymore for a little while. I don't want to read any more self help books for the sick. I want to sit out on my deck, enjoy some sunshine and read a trashy SF novel. I want to forget CFS for a bit. I want to make pretend I'm on vacation instead of sick. I don't want to read about it. I don't want to read others problems with it. I would love to read more posts from my well friends. I want to live vicariously through their stories and pictures. 90% of my FB newsfeed is now CFS related. After getting done going through my FB newsfeed the last thing I want to do is open up my own blog and read more posts about struggling with CFS.
In some ways I feel like I married into a dysfunctional family. Out of frustration and anger some CFSers are turning on other CFSers. I discovered a minor war being fought on line. I will NOT participate in the CFS vs ME war. It causes unnecessary hurt and strife for people who are already desperately ill. We need to work together to get biomarkers and tests and an illness definition that is accepted by the CDC so that we can be treated. We shouldn't be asking each other to join the proME antiCFS groups. I find it dismisses my own experience with my illness. There is also a war waging against CFIDS Association of America. This is another war I refuse to participate in. The information on their site helped me understand my own illness when I first got sick and had no idea what I was facing. I found the information honest and very very helpful. Some of the information on their site helped me put together a successful SSD application. I'm NOT going to bash this group. They may have some faults but they helped me tremendously when I needed it the most. More so than any other site on the web.
Yes CFS sucks. Yes we need to share information and support each other. I'm really happy that I've made some genuine friends via the internet that understand what I'm going through. But right now I want to pretend I'm normal. I want to forget about CFS for a few days. I know this sounds horrible. This goes against my core beliefs that I should be there for others like me. That I need to advocate for those that are sicker than myself but I'm scared. When I read so many stories from so many that are seriously ill from CFS for decades, I get scared that I won't recover. What I read in Dr. Bell's book is that I have a very good chance of beating this in roughly 4 years. What I read on FB scares me to death. People housebound or bedbound for decades. So I want to be selfish for a few days and not think about it. I want to pretend that this is temporary and that I'm getting better.
May is CFS awareness month. Being an activist by nature I joined in several actions. I wrote testimony for the CFSAC meeting. I 'liked' lots of CFS pages on FB. Friended lots of new people on FB that have found me via the CFS network on there. I watched most of the CFSAC meetings. I was posting CFS facts daily on FB.
To be brutally honest I'm CFSed out. I don't want to think about it any more. I'm trying to document the course of my illness in my affidavit. I'm seeing way too many angry CFS posts on FB. Yes, I actually hid some of the new 'friends'. I want to think about something else. I want to not have to write about it or read about it anymore for a little while. I don't want to read any more self help books for the sick. I want to sit out on my deck, enjoy some sunshine and read a trashy SF novel. I want to forget CFS for a bit. I want to make pretend I'm on vacation instead of sick. I don't want to read about it. I don't want to read others problems with it. I would love to read more posts from my well friends. I want to live vicariously through their stories and pictures. 90% of my FB newsfeed is now CFS related. After getting done going through my FB newsfeed the last thing I want to do is open up my own blog and read more posts about struggling with CFS.
In some ways I feel like I married into a dysfunctional family. Out of frustration and anger some CFSers are turning on other CFSers. I discovered a minor war being fought on line. I will NOT participate in the CFS vs ME war. It causes unnecessary hurt and strife for people who are already desperately ill. We need to work together to get biomarkers and tests and an illness definition that is accepted by the CDC so that we can be treated. We shouldn't be asking each other to join the proME antiCFS groups. I find it dismisses my own experience with my illness. There is also a war waging against CFIDS Association of America. This is another war I refuse to participate in. The information on their site helped me understand my own illness when I first got sick and had no idea what I was facing. I found the information honest and very very helpful. Some of the information on their site helped me put together a successful SSD application. I'm NOT going to bash this group. They may have some faults but they helped me tremendously when I needed it the most. More so than any other site on the web.
Yes CFS sucks. Yes we need to share information and support each other. I'm really happy that I've made some genuine friends via the internet that understand what I'm going through. But right now I want to pretend I'm normal. I want to forget about CFS for a few days. I know this sounds horrible. This goes against my core beliefs that I should be there for others like me. That I need to advocate for those that are sicker than myself but I'm scared. When I read so many stories from so many that are seriously ill from CFS for decades, I get scared that I won't recover. What I read in Dr. Bell's book is that I have a very good chance of beating this in roughly 4 years. What I read on FB scares me to death. People housebound or bedbound for decades. So I want to be selfish for a few days and not think about it. I want to pretend that this is temporary and that I'm getting better.
Sunday, May 15, 2011
What a Week
While I got great news last Saturday, I also continued my decline health wise due to the Diet From Hell. I spent Sunday and Monday stuck on the couch unable to even walk around the house. By the time Tuesday set in I had severe neuro symptoms and I was stuck in bed unable to talk or even think in complete sentences. Since this had now been nine days straight of decline and I was only getting worse I decided to hell with the doctors I'm eating real food again. So Wednesday I started with my usual egg for breakfast (which is really lunch by the time I get up) with a GF waffle and then grilled pork chop with sweet potato fries for dinner, GF pretzels and nuts for snacks and I started to feel better almost immediately. I called my holistic doc and let him know I was done with the diet. My stomach wasn't happy with me and I felt sick the next day. That pork chop was HUGE but damn it tasted good and suddenly I could walk around the house without help so there was no turning back. No more Diet From Hell. I might consider a rotation diet but I'm done with the elimination diet.
Actually I did like some of the experiments I did like eating fish and I love the shake I invented and the almond oatmeal is really good. I'm also keeping the mashed sweet potato/cauliflower which even hubby ate and he hates cauliflower.
I actually do want to change my diet up a little so I won't be completely reverting to my old diet. I started to include too many sweets. I've also found a decaf tea that I like. And I just ordered a book from Amazon called The Food and Feelings Workbook. I want to work on being healthier. When I took a turn for the worse last September I got an F'it attitude and starting including a lot of sweets in my diet. I was mad that I lost the bargain that I had made with myself: if I eat really healthy, be happy and rest up I would be better by fall. Of course that was before I knew anything about CFS so when I got really really bad in September I threw caution to the wind and started eating lots of cake, muffins, cookies and chocolate. Now that I know that I have very good odds of getting better (more on that in another post) I want to lead a healthier lifestyle. Plus the fact that all that crap didn't make me feel so great either. So I want to put together a new game plan. I'm going to work through my new book to improve my emotional eating and put together a new diet plan that includes less sweets, has more variety, has more foods that I love (I'm talking cauliflower, Brussel sprouts and scallops here) and is generally better for me.
Actually I did like some of the experiments I did like eating fish and I love the shake I invented and the almond oatmeal is really good. I'm also keeping the mashed sweet potato/cauliflower which even hubby ate and he hates cauliflower.
I actually do want to change my diet up a little so I won't be completely reverting to my old diet. I started to include too many sweets. I've also found a decaf tea that I like. And I just ordered a book from Amazon called The Food and Feelings Workbook. I want to work on being healthier. When I took a turn for the worse last September I got an F'it attitude and starting including a lot of sweets in my diet. I was mad that I lost the bargain that I had made with myself: if I eat really healthy, be happy and rest up I would be better by fall. Of course that was before I knew anything about CFS so when I got really really bad in September I threw caution to the wind and started eating lots of cake, muffins, cookies and chocolate. Now that I know that I have very good odds of getting better (more on that in another post) I want to lead a healthier lifestyle. Plus the fact that all that crap didn't make me feel so great either. So I want to put together a new game plan. I'm going to work through my new book to improve my emotional eating and put together a new diet plan that includes less sweets, has more variety, has more foods that I love (I'm talking cauliflower, Brussel sprouts and scallops here) and is generally better for me.
Monday, May 9, 2011
Random News
Bad news first. I'm doing terrible on this diet. The herx was only supposed to last four days. I've officially been on this diet hard core for seven and many items have been out of my diet for almost three weeks. I have very little energy and lots of muscle weakness. My legs feel like marshmallows when I try to stand or walk. Steps are unthinkable. If I exert myself even a little bit I am back to head bobbing and needing help walking across the room. I'm stuck back on the couch with the wireless keyboard in my lap so that I don't go nuts from boredom. I'm in way more pain than a week ago. Things are aching randomly, back, neck, hips, arms. I don't know if this is from the diet, the CFS or cortisone shot wearing off.
I've decided to give it one more week. If I'm still messed up a week from today I'm stopping this diet. I was doing so well before I started this I'm very bummed I agreed to it. I was hoping it would do me some good and it has been a disaster.
I am going to add the forbidden food back one at a time to see if I have any outright reactions to the food but I'm suspecting I already know what is going to happen. No sugar. Perhaps no corn or soy.
Second piece of bad news: my throat is swollen. I went to an ENT last week to check my throat out and make sure I didn't have cancer, tumors etc. He put me back on heartburn meds even though I told him this hadn't been a problem for a while. I'm still having trouble with my voice cutting out on me randomly even though I've been on meds for days. I'm also wondering if the meds will interfere with the results of the elimination diet. However, I like swallowing and I was having trouble with this on my worst days. I've even coughed up some of the larger pills I'm supposed to take every day after they've gotten stuck in my throat.
Onto the good news:
The biggest is that I was approved for Social Security disability on my first try. This was without the help of my lawyer and there is a 70% rejection rate on applications. Approval usually takes roughly 2 years, one appeal and a court appearance. I also managed this without a confirmed diagnosis since the doctor appointments fell after the SSD deadline. I'll write a post on what I did at a later date. I've been putting it off because I want to include some useful links but of course I don't remember them and have to go hunting for the information.
This means I don't have to move. It increases the likelyhood of winning my LTD appeal. If they are nuts enough to deny my appeal I would win in court. There is excellent precidence for people who win SSD and are denied LTD winning in court.
I've started my sofa sloth activism. I've sent emails to my local congressional reps, President Obama and sent testimony to the DHHS CFIDS committee. Next I'm going to have one of my recipes from Fast Foodie published in the cookbook to benefit WPI. I'm very excited about this. It is a fun thing to do and I will be able to say I'm published! How cool is that!?!
My packet for Dr. Komaroff is now complete and sitting on the table. I just have to gather up the energy to go to the post office and get it in the mail.
Between The Diet From Hell being almost over, my SSD coming through which will relieve my finances and my work on Fast Foodie going to help others with CFS, I've been in a great mood. I'm happy again even if I'm stuck on the couch.
I've decided to give it one more week. If I'm still messed up a week from today I'm stopping this diet. I was doing so well before I started this I'm very bummed I agreed to it. I was hoping it would do me some good and it has been a disaster.
I am going to add the forbidden food back one at a time to see if I have any outright reactions to the food but I'm suspecting I already know what is going to happen. No sugar. Perhaps no corn or soy.
Second piece of bad news: my throat is swollen. I went to an ENT last week to check my throat out and make sure I didn't have cancer, tumors etc. He put me back on heartburn meds even though I told him this hadn't been a problem for a while. I'm still having trouble with my voice cutting out on me randomly even though I've been on meds for days. I'm also wondering if the meds will interfere with the results of the elimination diet. However, I like swallowing and I was having trouble with this on my worst days. I've even coughed up some of the larger pills I'm supposed to take every day after they've gotten stuck in my throat.
Onto the good news:
The biggest is that I was approved for Social Security disability on my first try. This was without the help of my lawyer and there is a 70% rejection rate on applications. Approval usually takes roughly 2 years, one appeal and a court appearance. I also managed this without a confirmed diagnosis since the doctor appointments fell after the SSD deadline. I'll write a post on what I did at a later date. I've been putting it off because I want to include some useful links but of course I don't remember them and have to go hunting for the information.
This means I don't have to move. It increases the likelyhood of winning my LTD appeal. If they are nuts enough to deny my appeal I would win in court. There is excellent precidence for people who win SSD and are denied LTD winning in court.
I've started my sofa sloth activism. I've sent emails to my local congressional reps, President Obama and sent testimony to the DHHS CFIDS committee. Next I'm going to have one of my recipes from Fast Foodie published in the cookbook to benefit WPI. I'm very excited about this. It is a fun thing to do and I will be able to say I'm published! How cool is that!?!
My packet for Dr. Komaroff is now complete and sitting on the table. I just have to gather up the energy to go to the post office and get it in the mail.
Between The Diet From Hell being almost over, my SSD coming through which will relieve my finances and my work on Fast Foodie going to help others with CFS, I've been in a great mood. I'm happy again even if I'm stuck on the couch.
Saturday, May 7, 2011
Wednesday, May 4, 2011
Progress Report
I have been on The Diet From Hell for several days now. Sunday was my last and finally cheat. It was my birthday dinner so I had buttered green beans with my dinner and then chocolate mousse with sugar, splenda and chocolate in it with some coffee with cream. I've been mucking about with various food substitutes for two weeks now. Trying different items for breakfast and snacks but Monday was my first official full blown diet day.
I started herxing yesterday. I feel awful. I'm back to my energy levels I had in March including the neuro symptoms so I'm having trouble reading again, sitting up, thinking, planning, etc. I went out yesterday to a doc appointment and later Trader Joes. Last week this would have been fine. Yesterday I had to have help out of the car and back into the house. I was in full head bobbing mode. This bums me out to no end. I was doing so well. The nutritionist told me that this would last four days but I think that might be for a normal person. I'm wondering how long this is going to set me back. Something that would only affect a normal person for a couple of days usually takes me out for weeks. I will be seriously pissed off if this has set me back for months.
Enough complaining. I'm using The Diet From Hell as an opportunity to try different food items and I've had a couple of pleasant surprised. I had gotten into a food rut prior to this diet and was eating the same thing daily with only my dinner being different. My big problem is find a quality protein source to eat with my meals and snacks. I found that the rice protein powder wasn't cutting it neither were the nut butters. During my one of my experimental modes years ago I found that I had to eat highly concentrated high quality animal protein with my meals or I was starving hungry an hour later. The items that worked were fish, chicken, pork, eggs, tofu and yogurt. They had to be organic. The cheap crap they pass off as real chicken that has been pressed out of chicken paste and had grill lines painted on won't cut it. I found tofu to work better than that crud.
So the last two weeks have been a pursuit of protein. I finally made it out to a store last night and I scored big time. I got lots of frozen fish. I love fish of all types and fish is on my allowed list even shellfish. What did I have for breakfast? Shrimp! Yay! Yum!
I love the nut butters so I'll use them for the snacks and the occasional bowl of oatmeal. However, when I make oatmeal with milk it keeps me full for hours. When I make it with nut butter and almond milk, yup, two hours later I'm hungry again. It is almost like my body has trouble digesting anything else. I'm seriously considering a Paleo diet when this elimination diet is over with. I'm sure I would feel much better on it.
So here is my list of keepers so far:
Broiled shrimp for breakfast with olive oil, lemon juice, dill and garlic powder
Banana Strawberry Shake for dessert: almond milk, coconut milk, rice protein powder, fresh banana and strawberries
Rice cakes with cashew butter and for little more decadence a little fruit only jam
Apple slices or pear slices with cashew butter for snacks
Hummus with nut crackers for snack (need to find a sub for the nut crackers since they have potato starch in them) maybe I'll switch to the rice cakes for the hummus....
I'll start posting the recipes on Fast Foodie when I have more energy. I know this post itself is a bit rambly. I've already had to make tons of typing and spelling corrections. I can hardly wait til my brain works again. Tomorrow is poached salmon for breakfast. The anticipation!
I started herxing yesterday. I feel awful. I'm back to my energy levels I had in March including the neuro symptoms so I'm having trouble reading again, sitting up, thinking, planning, etc. I went out yesterday to a doc appointment and later Trader Joes. Last week this would have been fine. Yesterday I had to have help out of the car and back into the house. I was in full head bobbing mode. This bums me out to no end. I was doing so well. The nutritionist told me that this would last four days but I think that might be for a normal person. I'm wondering how long this is going to set me back. Something that would only affect a normal person for a couple of days usually takes me out for weeks. I will be seriously pissed off if this has set me back for months.
Enough complaining. I'm using The Diet From Hell as an opportunity to try different food items and I've had a couple of pleasant surprised. I had gotten into a food rut prior to this diet and was eating the same thing daily with only my dinner being different. My big problem is find a quality protein source to eat with my meals and snacks. I found that the rice protein powder wasn't cutting it neither were the nut butters. During my one of my experimental modes years ago I found that I had to eat highly concentrated high quality animal protein with my meals or I was starving hungry an hour later. The items that worked were fish, chicken, pork, eggs, tofu and yogurt. They had to be organic. The cheap crap they pass off as real chicken that has been pressed out of chicken paste and had grill lines painted on won't cut it. I found tofu to work better than that crud.
So the last two weeks have been a pursuit of protein. I finally made it out to a store last night and I scored big time. I got lots of frozen fish. I love fish of all types and fish is on my allowed list even shellfish. What did I have for breakfast? Shrimp! Yay! Yum!
I love the nut butters so I'll use them for the snacks and the occasional bowl of oatmeal. However, when I make oatmeal with milk it keeps me full for hours. When I make it with nut butter and almond milk, yup, two hours later I'm hungry again. It is almost like my body has trouble digesting anything else. I'm seriously considering a Paleo diet when this elimination diet is over with. I'm sure I would feel much better on it.
So here is my list of keepers so far:
Broiled shrimp for breakfast with olive oil, lemon juice, dill and garlic powder
Banana Strawberry Shake for dessert: almond milk, coconut milk, rice protein powder, fresh banana and strawberries
Rice cakes with cashew butter and for little more decadence a little fruit only jam
Apple slices or pear slices with cashew butter for snacks
Hummus with nut crackers for snack (need to find a sub for the nut crackers since they have potato starch in them) maybe I'll switch to the rice cakes for the hummus....
I'll start posting the recipes on Fast Foodie when I have more energy. I know this post itself is a bit rambly. I've already had to make tons of typing and spelling corrections. I can hardly wait til my brain works again. Tomorrow is poached salmon for breakfast. The anticipation!
Monday, May 2, 2011
Food
For a little four letter word it sure is complicated. For two weeks now I've been trying to start The Diet From Hell. Man is my ego putting up a fight with this one. It is pitching the mother of all hissy fits.
It should be a simple thing. I'm sick. My guts don't work right. The nice nutritionist has given me a list of foods to avoid for six weeks so that I'll feel better and give my body a chance to heal. All I have to do is stop eating them.
So why is it so hard? That, my friends, turns out to be a very long list:
I must say that I have made some progress. I've managed to drop baked goods out of my diet. I ran out of GF bread and English muffins two weeks ago and haven't bought any to replace them. I've also dropped corn out of my diet as of last week. I actually ate rice with my cacciatore instead of corn pasta. I've also dropped the night shade vegetables, potatoes, tomatoes, peppers and eggplant. I've just started skipping salad dressing, vinegar and soy sauce. Soy was easy to drop since the only kind I had was the occasional spritz of soy sauce. Once I finished up the oranges I had just purchased citrus was off the list.
So what is left behind? Sugar and dairy and chocolate.
Although I did have an excellent GF pizza for my birthday so I ingested yeast. The crust is made from millet and flax which are on my okay list so it was just the yeast, sugar, tomatoes and cheese that were no nos. However, the pizza was a one time cheat.
Sugar I think I'm going to be able to give up. Apart from chocolate things I don't eat much of it now anyway. I do make a couple of dinners that requires it to balance out the acid in the dish but I'm not allowed to eat citrus anymore so I can't make those dishes anyway.
Chocolate is going to be real hard. Particularly since this is one of my big comfort foods. The one I turn to when I feel bad emotionally. I don't particularly care what form it comes in. It can be bars, baking chips or ice cream. As long as it is chocolate. However, I think I can do this. I had my last chocolate binge tonight. I went out for a birthday dinner at Legal Seafoods. I behaved and had grilled fish, brown rice and green beans. But I wanted a nice birthday dessert before committing to The Diet From Hell so I had a wonderful chocolate mousse. Yum! Yay!
As for diary. I've been trying out new dishes as substitutes for my eggs for breakfast, yogurt snacks and cheese laced dinners. Some of them are really good: cashew butter on rice cakes, butter beans with olive oil, rosemary, sea salt and fresh ground black pepper. Some of them are nasty: rice protein powder, coconut milk and mango smoothie. YUCK!
However, something my shrink said got me reframing this. She told me this is only temporary. Once I find out what is bothering me then at least I know what it is. I can still eat it if I want but understand that the food has consequences. So I made a decision this morning.
Years ago when I figured out that I had a wheat sensitivity I was also tested for milk allergy. I don't have one. Since having CFS I run hot and cold with milk. If I'm doing okay I seem to be able to tolerate it fine as long as I don't have too much of it. When I get really sick with CFS then I can't have it and yogurt is the first to give me trouble. When I get that bad I severely cut back on my dairy intake. My morning tea with milk is always my last hold out.
So what is my decision? Since I'm not flat out allergic to it, I'm going to eat the stuff anyway once the elimination diet is over, I've already tinkered with it in my diet and know how it affects me, so I'm going to keep my morning cup of tea with milk. That is my small defiance in the face of The Diet From Hell. I'm having my cup of tea. I will even go decaffinated but I'm English and we stop wars for tea time. Black tea with milk in the morning.
It should be a simple thing. I'm sick. My guts don't work right. The nice nutritionist has given me a list of foods to avoid for six weeks so that I'll feel better and give my body a chance to heal. All I have to do is stop eating them.
So why is it so hard? That, my friends, turns out to be a very long list:
- Since I've been chubby since puberty, people are always giving me diet advice.
- I now hate diet advice.
- Everyone thinks they are a food expert.
- I'm old enough to remember when sugar was bad for you, saccharine was good for you as well as fat and red meat.
- Since I've been sick with CFS I've been tinkering with my diet to make sure whatever I eat doesn't make me nauseous or give me heartburn. If I don't feel good after I eat it I don't have it again.
- Prior to getting sick I have been tinkering with my diet for the last ten years. Tweeking it out so that I have sustained energy over the day and the best sleep at night.
- I gave up coffee 4 years ago.
- I gave up wheat 5 years ago.
- I've been very consciencious about what I eat since college and even when total vegetarian for years afterwards.
- I gave up anything artificial 19 years ago. (After a fake butter implosion: long story)
- I started eating organic 18 years ago.
- I gave up eating cows 30 years ago and never reintroduced them into my diet when I started eating meat again.
- I feel like my nutrition work is unappreciated by the nutritionist. No one has said good job.
- People just see a chubby woman and think gee she must eat a lot of donuts. I don't even remember when I last ate a donut, even a GF one.
- Several docs have mentioned me loosing weight. Shit didn't they notice I'm a tad sick????
- One of the CFS docs mentioned putting me on a weight loss plan once I'm done with the elimination diet. If he mentions it again I'm firing him. I mean WTF dude???
- I am an emotional eater.
- The elimination diet takes away all and I do mean ALL of my comfort foods. Every single one.
- No chocolate. No dairy. No cheese. No tea with milk. No ice cream. No oatmeal made with milk.
- I have to come up with new recipes for breakfast, lunch and dinner.
- All my go to food is now forbidden.
- I don't have the energy to cook everything from scratch.
- I have to find new snacks.
- I have to find new sources of protein since I need it at each meal to keep my blood sugar stable.
- Rice protein powder has a gritty mouth feel to it.
- Fish for breakfast???? I can't eat dairy, eggs, bacon or ham.
- The little guy in my head is screaming bloody murder.
- But mostly he is yelling, " I CAN'T DO THIS!!!! WHAT THE HELL ARE YOU THINKING??"
I must say that I have made some progress. I've managed to drop baked goods out of my diet. I ran out of GF bread and English muffins two weeks ago and haven't bought any to replace them. I've also dropped corn out of my diet as of last week. I actually ate rice with my cacciatore instead of corn pasta. I've also dropped the night shade vegetables, potatoes, tomatoes, peppers and eggplant. I've just started skipping salad dressing, vinegar and soy sauce. Soy was easy to drop since the only kind I had was the occasional spritz of soy sauce. Once I finished up the oranges I had just purchased citrus was off the list.
So what is left behind? Sugar and dairy and chocolate.
Although I did have an excellent GF pizza for my birthday so I ingested yeast. The crust is made from millet and flax which are on my okay list so it was just the yeast, sugar, tomatoes and cheese that were no nos. However, the pizza was a one time cheat.
Sugar I think I'm going to be able to give up. Apart from chocolate things I don't eat much of it now anyway. I do make a couple of dinners that requires it to balance out the acid in the dish but I'm not allowed to eat citrus anymore so I can't make those dishes anyway.
Chocolate is going to be real hard. Particularly since this is one of my big comfort foods. The one I turn to when I feel bad emotionally. I don't particularly care what form it comes in. It can be bars, baking chips or ice cream. As long as it is chocolate. However, I think I can do this. I had my last chocolate binge tonight. I went out for a birthday dinner at Legal Seafoods. I behaved and had grilled fish, brown rice and green beans. But I wanted a nice birthday dessert before committing to The Diet From Hell so I had a wonderful chocolate mousse. Yum! Yay!
As for diary. I've been trying out new dishes as substitutes for my eggs for breakfast, yogurt snacks and cheese laced dinners. Some of them are really good: cashew butter on rice cakes, butter beans with olive oil, rosemary, sea salt and fresh ground black pepper. Some of them are nasty: rice protein powder, coconut milk and mango smoothie. YUCK!
However, something my shrink said got me reframing this. She told me this is only temporary. Once I find out what is bothering me then at least I know what it is. I can still eat it if I want but understand that the food has consequences. So I made a decision this morning.
Years ago when I figured out that I had a wheat sensitivity I was also tested for milk allergy. I don't have one. Since having CFS I run hot and cold with milk. If I'm doing okay I seem to be able to tolerate it fine as long as I don't have too much of it. When I get really sick with CFS then I can't have it and yogurt is the first to give me trouble. When I get that bad I severely cut back on my dairy intake. My morning tea with milk is always my last hold out.
So what is my decision? Since I'm not flat out allergic to it, I'm going to eat the stuff anyway once the elimination diet is over, I've already tinkered with it in my diet and know how it affects me, so I'm going to keep my morning cup of tea with milk. That is my small defiance in the face of The Diet From Hell. I'm having my cup of tea. I will even go decaffinated but I'm English and we stop wars for tea time. Black tea with milk in the morning.
Sunday, May 1, 2011
Sick Humor
Free Health Care in the USA
If you can't afford a doctor, go to an airport. You'll get a free x-ray, a breast exam and if you mention Al Qaeda, you'll get a free colonoscopy.
If you can't afford a doctor, go to an airport. You'll get a free x-ray, a breast exam and if you mention Al Qaeda, you'll get a free colonoscopy.
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