I've been having a really difficult time with my sister for the last two years. It finally culminated, at my therapist's urging, in cutting off all contact with her for my own piece of mind and general health. Of course she is still giving my mother heartburn and information wends its way back around to me.
For some reason she doesn't think I want to get better. I finally found out why, I'm not seeing the type of doctor that she approves of. She doesn't like the fact that I'm being a "know it all" regarding my illness and doesn't agree with my treatment plan, not that she actually knows what it is. Sis wants me to travel six hours to see the "real" doctor in the Adirondacks because she "cured" herself of CFS and fibro with magnets and aura cleansing. The world famous CFS doctor and the functional medicine doctor that are treating me that have been treating actual patients for decades obviously don't know what they are doing. And because I choose to see them instead of her "real" doctor I obviously don't want to get better.
To take this at face value, I would never EVER hired her as a patient advocate. She never researched my illness, never mind treatments (there are none). She is taking this holistic doctor's word on her self diagnosis and treatment plan. She doesn't understand that there are degrees of severity of the illness. The doctor might well have had real CFS. People that contract the mild form often go into remission after two years. The doctor might have treated herself with her magnets etc for two years and POOF she is cured. My sister really doesn't have a grip on the notion of correlation doesn't equal causation. She doesn't know that both of my CFS treating docs told me that I was the worst case of CFS that either of them had treated, although via the internet I do personally know of patients that are worse than I am.
I looked into the "real" doctor to see what treatments she offered. In the same paragraph she has EMF blocking plan along with a mega spectrum photon generator to re-energize your cells. What the what!?!?!? The photon generator is basically a lighted neon bulb that you rub on your body giving yourself a mild electric shock, i.e. it generates an EMF field and you are giving yourself an electric shock. It even says to wear rubber gloves when using it to insulate yourself from shocks. Talk about quackery. And I'm supposed to hop in a car and drive six hours to see this shyster?
Never mind the hocky treatment, there is such a thing as respect for the patient, patient rights, etc. Even if she had picked out the best CFS/ME doctors in the country she has no right to second guess me on my own treatment. She definitely has no right to say that I don't want to get better just because I'm seeing doctors that she doesn't approve of. She doesn't have a right to come up with her own treatment plan and then get angry when I refuse it. This is all sorts of wrong.
However, to get at the core of this issue you have to realize that this is my sister's belief system. She has swallowed the wishful thinking philosophy hook line and sinker. That whole If You Just Have the Correct Thoughts Then Wonderful Things Will Manifest In Your Life thing is her core belief system. Me and my illness flies in the face of that. I'm not wishing hard enough. I'm must not really want to get better because I'm still sick. Chronic illness doesn't fit in neatly with this philosophy. The patient must have done something wrong to manifest this illness. They must have thought the wrong thoughts because health hasn't returned. This is why I walked away from this philosophy years ago. Something didn't quite sit right with me about it. Sorry Wayne Dyer. This leads to blaming the patient for becoming sick and staying sick because they obviously did something wrong.
Buddhism makes more sense to me. Things change. Things always change. Life is impermanence. We have been given this gift of a body and this life for a brief moment in time. We are lucky when it works well and even lucky when it breaks. Wait and things will change again. Suffering comes from wanting. Suffering comes from yearning. Let go of wanting and suffering will end.
As you can see we have a huge chasm between our core belief systems and this underlies her comments. If she accepts that I have a chronic illness then she has to change her belief system. No one reacts well to a challenge to their core belief system. It is the framework with which we understand the world and therefore sacred to a degree. Some people can alter that framework after much thought and deliberation. Others can not and will deny reality rather than change their beliefs. I am coming to believe that Sis sits in the later camp. Her beliefs are right: reality is wrong.
Because these comments are coming from her belief system they can't be argued with. She has had a rough life and her belief system is holding her afloat right now. All be it the wishful thinking isn't working for her either. There will be no discussion or reasoning with her. Sometimes all you can do is walk away.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Wednesday, January 14, 2015
Wednesday, December 17, 2014
Brother Dearest
Warning: this is another rant session. One of these days I'm going to have to write about some nice stuff that happens to me. Nice stuff does happen. I just don't write about it. I prefer writing about my turmoil. It helps me think things through.
The relationship with my brother has been odd to say the least. He was raised by my grandmother and great grandmother (a separate very long story) in England and I had very little contact with him during that time. I moved to the US with my sister and parents when I was seven and we left him behind. He moved over nine years later after they both passed away within a month of each other. We were great friends back then. He taught me how to solder. We hung out together. Played checkers a lot. Went to the movies together. As he got to know more people and made friends we hung out less but still got along fine. After I moved out of my parents house we lived together on and off for a few years. We got along fine. Then I moved to another part of the state. He met the love of his life and got married. They went to Hawaii for three years on a work contract. Things were never the same again.
Once he got back, I kept trying to hook up. We lived near each other again but they were always too busy. Didn't matter how many times I asked they were busy. Over the years this degraded into a once a year three to four hour get together the day after Christmas with a few emails exchanges in between. Once I bought a house this get together was ALWAYS at my house. I cooked. I cleaned. I hosted. They brought beer (we don't drink) and presents. On the years that they went skiing instead, I mailed a box full of presents which often got sent late (I'm notorious for this). We received and envelope full of gift certificates to places we don't shop at. In fact I still have a few of them since the stores went out of business. The emails got fewer in number and I always initiated the exchange. Once I got sick those stopped all together. I still hosted the Christmas get togethers even though I was sick. I cooked. My husband, son and housecleaner cleaned. My family showed up with booze, more gift certificates and the occasional exchange student.
Last year my sister changed the holiday dynamic by inviting herself and my mom over to my brother's house for Christmas. No one invited me so I invited myself. This didn't go well since we could only agree on Christmas eve after dinner for our get together. This turned into a three hour car trip in heavy traffic which messed me up to complete head bobbing stage. Luckily I had my walker with me because I couldn't stand up on my own by the time we got to his house. Of course I also couldn't talk, track conversations or take social cues at all. My son told me stories later of all the uncomfortable stuff I missed: sis being drunk, SIL's banter about divorcing my brother, etc. My mom was so uncomfortable that she wanted to leave and come to my house for Christmas which she did. We had a wonderful time.
Then this past summer there was a huge family get together that no one even bothered to tell me about, let alone invite me to. I found out because my mom had been so excited to meet up with her old friend that my sister had invited. The whole thing was a huge surprise party for the two of them.
This prompted my letter to sister dearest and our subsequent falling out.
Now Christmas is at my brothers again and again I didn't get invited. My mom has refused to go. She is coming here instead. She also decided to call him to find out what the heck is going on. I know she filtered the conversation heavily and since it is pretty much open season on hubs the version I got puts the blame squarely on hub's shoulders. Now I could understand this if he was actually mean to anyone. Granted he can be very socially awkward sometimes but he has never gone out of his way to be nasty to any of these people. As he put it, "I see these people three hours a year and even then I don't talk most of the time so where are they getting this stuff from?" The only time he saw my brother on his own ever was at a job site a couple of years ago and they had a very pleasant lunch together and chatted for three hours about work stuff. So what gives??? We've puzzled over this at length and are at a loss. Even if they did hate hubs that much why not see me individually. This is what hubs and his brother do. He sees all of his siblings sans spouses. I have never seen my brother without his entourage in tow. It is weird.
So now what? I'm pretty much done. Can't get blood from a stone. I've tried for many years to maintain a relationship with him but he just isn't interested. I think if we weren't related by blood we would have stopped talking once he got married. I often wonder if I'm not SIL approved and that is what is driving this entire thing. We got along fine prior to him getting married and we are almost identical personality wise. I wonder if he is that much of a milquetoast?
Either way, I'm done. I'm too sick to pursue this any further. I don't want to contact him directly because my ego can't take another rejection after that last one from my sister. I would like to at least maintain the illusion that the relationship can be saved at some point. Hope springs eternal. This will get interesting if SIL goes through with her threat of divorce....
I want to say that holidays bring out the worst in some people but really it is that you can very easily hide the family dirt under the rug the rest of the year. However, when you pick the rug up for the obligatory annual holiday get together that pile of dirt is right there staring you in the face. It hasn't gone away just because you ignored it all year. Someone inevitably steps in the pile and the dirt flies everywhere spraying everyone in the room. It would be best to deal with this prior to the holidays but some people hide very well.
The relationship with my brother has been odd to say the least. He was raised by my grandmother and great grandmother (a separate very long story) in England and I had very little contact with him during that time. I moved to the US with my sister and parents when I was seven and we left him behind. He moved over nine years later after they both passed away within a month of each other. We were great friends back then. He taught me how to solder. We hung out together. Played checkers a lot. Went to the movies together. As he got to know more people and made friends we hung out less but still got along fine. After I moved out of my parents house we lived together on and off for a few years. We got along fine. Then I moved to another part of the state. He met the love of his life and got married. They went to Hawaii for three years on a work contract. Things were never the same again.
Once he got back, I kept trying to hook up. We lived near each other again but they were always too busy. Didn't matter how many times I asked they were busy. Over the years this degraded into a once a year three to four hour get together the day after Christmas with a few emails exchanges in between. Once I bought a house this get together was ALWAYS at my house. I cooked. I cleaned. I hosted. They brought beer (we don't drink) and presents. On the years that they went skiing instead, I mailed a box full of presents which often got sent late (I'm notorious for this). We received and envelope full of gift certificates to places we don't shop at. In fact I still have a few of them since the stores went out of business. The emails got fewer in number and I always initiated the exchange. Once I got sick those stopped all together. I still hosted the Christmas get togethers even though I was sick. I cooked. My husband, son and housecleaner cleaned. My family showed up with booze, more gift certificates and the occasional exchange student.
Last year my sister changed the holiday dynamic by inviting herself and my mom over to my brother's house for Christmas. No one invited me so I invited myself. This didn't go well since we could only agree on Christmas eve after dinner for our get together. This turned into a three hour car trip in heavy traffic which messed me up to complete head bobbing stage. Luckily I had my walker with me because I couldn't stand up on my own by the time we got to his house. Of course I also couldn't talk, track conversations or take social cues at all. My son told me stories later of all the uncomfortable stuff I missed: sis being drunk, SIL's banter about divorcing my brother, etc. My mom was so uncomfortable that she wanted to leave and come to my house for Christmas which she did. We had a wonderful time.
Then this past summer there was a huge family get together that no one even bothered to tell me about, let alone invite me to. I found out because my mom had been so excited to meet up with her old friend that my sister had invited. The whole thing was a huge surprise party for the two of them.
This prompted my letter to sister dearest and our subsequent falling out.
Now Christmas is at my brothers again and again I didn't get invited. My mom has refused to go. She is coming here instead. She also decided to call him to find out what the heck is going on. I know she filtered the conversation heavily and since it is pretty much open season on hubs the version I got puts the blame squarely on hub's shoulders. Now I could understand this if he was actually mean to anyone. Granted he can be very socially awkward sometimes but he has never gone out of his way to be nasty to any of these people. As he put it, "I see these people three hours a year and even then I don't talk most of the time so where are they getting this stuff from?" The only time he saw my brother on his own ever was at a job site a couple of years ago and they had a very pleasant lunch together and chatted for three hours about work stuff. So what gives??? We've puzzled over this at length and are at a loss. Even if they did hate hubs that much why not see me individually. This is what hubs and his brother do. He sees all of his siblings sans spouses. I have never seen my brother without his entourage in tow. It is weird.
So now what? I'm pretty much done. Can't get blood from a stone. I've tried for many years to maintain a relationship with him but he just isn't interested. I think if we weren't related by blood we would have stopped talking once he got married. I often wonder if I'm not SIL approved and that is what is driving this entire thing. We got along fine prior to him getting married and we are almost identical personality wise. I wonder if he is that much of a milquetoast?
Either way, I'm done. I'm too sick to pursue this any further. I don't want to contact him directly because my ego can't take another rejection after that last one from my sister. I would like to at least maintain the illusion that the relationship can be saved at some point. Hope springs eternal. This will get interesting if SIL goes through with her threat of divorce....
I want to say that holidays bring out the worst in some people but really it is that you can very easily hide the family dirt under the rug the rest of the year. However, when you pick the rug up for the obligatory annual holiday get together that pile of dirt is right there staring you in the face. It hasn't gone away just because you ignored it all year. Someone inevitably steps in the pile and the dirt flies everywhere spraying everyone in the room. It would be best to deal with this prior to the holidays but some people hide very well.
Thursday, August 28, 2014
Sister Dearest rev.2
There is no doubt that relationships of all kinds are stretched to their limits when you become chronically ill. Sometimes those relationships break.
I did do some heavy editing but it was necessary for clarity. The actual paragraphs wandered all over the place: telling me how awesome my brother was for taping my mom skating; accusing me of mocking my brother; accusing my husband of making jokes at others' expense; accusing me of laughing at said jokes; she doesn't want to be in the same room with my husband; her wishing I would get well; etc, etc.
I would have thought she wrote this while drunk but it was sent at 8:30am. The writing was all over the place hopping from topic to topic. But, the basic gist was I'm a bad person, my husband is a bad person, and she wants nothing to do with either of us. Sorry you are sick but fuck off.
Involved in the middle of that mess was the following question:
I just can't write about this without getting horribly upset and angry. How DARE she!?! Positive thoughts my ass!
So after much hand wringing, discussions with hubs and mum and my therapist, I cut off all communication with her. I sent her a brief email stating "There will be no further communication between us. I will only contact you with regards to Mum's health and well being. I have copied Mum and [brother] to make them aware of the situation." If I engaged with any of her content, then a massive massive fight would ensure. I wouldn't win. It would take a huge amount of energy on my part for very little gain. I thought long and hard about things and decided that the best course of action was to severe all contact. Even my therapist told me that it would be the healthiest thing for me to do; the best way to take care of myself.
You know what I felt afterwards? Relief. I'm done with her. I'm done with her crazy. I'm done walking on eggshells around her scared that I'll set her off and get yelled at. I don't have to host any more weird family gatherings where the only people that actually talk to me are my Mum and my niece. You would think that after feeding and hosting that lot for decades they would at least talk to me. Fuck them. Fuck them all. I'm done.
In an odd way I feel like this illness has been an opportunity in disguise. I have lost friends and am now shedding family. I have lost my job and my career. But in return my relationships with my mother and son are better now than before. Hubs and I are on the mend. I can pick a new job. I can make new friends. I can make my life so much better than it was. All new and shiny and one that will hopefully make me happy. I'm looking forward to my new life. I think it will be spectacular.
I originally wrote this post two weeks ago when it was all still very raw. I had to save it as a draft because it was long and nasty and angry. So here is the revised version. While it sticks to the facts more and I don't ramble as much, I still get incredibly angry so there are some bad words in it. Consider yourself warned.
It has been only two weeks but it already seems a lifetime: I broke off all contact with my sister. Things have been weird between us for about two years. She stopped visiting. I can't travel so that meant no contact. We were never ones to chat via phone or email. Mostly I would hear from her when she wanted something. So this meant no conversations casual or otherwise. We did visit in passing at family functions. Mostly it was the big hug at the beginning and end of the visit like we were long lost pals but the bulk of the day would be me joining conversation groups only to have them dissolve around me. After a few attempts at having conversation with various family members, I would decide I was too tired to participate in this game and go into a quiet room to sit by myself for the remainder of the event.
The cold shoulder from my sister reached new heights this year: I had to invite myself over to my brother's for the family Christmas get together (he never hosts Christmas so I can only imagine that my sister instigated it). Both my brother and sister didn't visit Mum and I when we were all on Cape Cod together this spring. Then I wasn't invited to a family dinner this summer that my sister had arranged.
I had enough by this point and called her out on this. I sent her a simple to the point email asking why I had been excluded. (You have no idea how big a deal this is for me. Standing up to my sister is like challenging Thor. You risk bringing her wrath down upon your head. I was proud of myself for sending the email. It took great amounts of courage for me. Anyway, I digress...) I got odd lame excuses for the exclusions. Things like it was all my brother's fault for the Christmas exclusion even though he never makes arrangements and she ALWAYS invites him to my house. Or that it was my fault for not arranging the dinner party myself. While this isn't stellar behavior, it is what I expected from her. If it was only that, I might have dropped the entire thing. However, the second half of the email took the biscuit.
The first paragraph was a bizarre attack on my husband for some slight that occurred over two years ago. None of us can figure out what happened to prompt this. My sister though has never gotten over her man hating days. Going through three and a half husbands doesn't elevate her opinion of men either and I think my husband is just a convenient target. Misandry at its finest.
I do know hubs was horrible during the first year of my illness and I did almost leave him. However, he has turned things around and our marriage is almost back to normal now. It took two years but it looks like things are back on track. My sister on the other hand seems to want war.
Okay, horrible and weird but still not a pull the plug on the relationship offence. This is just normal bat-shit crazy sister stuff that I've come to expect from her.
The next paragraph was the kick in the teeth though:
"I surround myself with positive people. ... I choose to have positive thoughts and be with positive people. People that can see the good in everything. [sic] Not the little negative nit picking little things. ... Bottom line [sic] I believe that you and I have never had anything in common and never will. ... I wish positive things for you but I do not choose to be around you."
I did do some heavy editing but it was necessary for clarity. The actual paragraphs wandered all over the place: telling me how awesome my brother was for taping my mom skating; accusing me of mocking my brother; accusing my husband of making jokes at others' expense; accusing me of laughing at said jokes; she doesn't want to be in the same room with my husband; her wishing I would get well; etc, etc.
I would have thought she wrote this while drunk but it was sent at 8:30am. The writing was all over the place hopping from topic to topic. But, the basic gist was I'm a bad person, my husband is a bad person, and she wants nothing to do with either of us. Sorry you are sick but fuck off.
Involved in the middle of that mess was the following question:
"If you were handed today a miracle pill that you could take, and your CFS and other ailments would just disappear - which means that you would have to go back to work tomorrow, clean the house again, and lead a "normal" life....would you take the pill?"How bloody insulting is that!?! I've done nothing but try to find a cure or even symptom relief. Some of my "cures" have made things worse (see the posts on Cipro). Luckily most cures have been ineffectual or had side effects that went away when I stopped taking them. Some have helped as I've talked about before. I would love nothing more than to lead a normal life again. I HATE HATE HATE her for even asking this. How horribly mean is this???? She is implying that I like sitting around the house not doing anything. That I like being sick. What the ever living fuck!?!
I just can't write about this without getting horribly upset and angry. How DARE she!?! Positive thoughts my ass!
So after much hand wringing, discussions with hubs and mum and my therapist, I cut off all communication with her. I sent her a brief email stating "There will be no further communication between us. I will only contact you with regards to Mum's health and well being. I have copied Mum and [brother] to make them aware of the situation." If I engaged with any of her content, then a massive massive fight would ensure. I wouldn't win. It would take a huge amount of energy on my part for very little gain. I thought long and hard about things and decided that the best course of action was to severe all contact. Even my therapist told me that it would be the healthiest thing for me to do; the best way to take care of myself.
You know what I felt afterwards? Relief. I'm done with her. I'm done with her crazy. I'm done walking on eggshells around her scared that I'll set her off and get yelled at. I don't have to host any more weird family gatherings where the only people that actually talk to me are my Mum and my niece. You would think that after feeding and hosting that lot for decades they would at least talk to me. Fuck them. Fuck them all. I'm done.
In an odd way I feel like this illness has been an opportunity in disguise. I have lost friends and am now shedding family. I have lost my job and my career. But in return my relationships with my mother and son are better now than before. Hubs and I are on the mend. I can pick a new job. I can make new friends. I can make my life so much better than it was. All new and shiny and one that will hopefully make me happy. I'm looking forward to my new life. I think it will be spectacular.
Thursday, December 19, 2013
Christmas Card Blues
Christmas has never really been a great holiday for me. My dad would often lock himself in the bedroom and stay drunk for the entire three days we spent celebrating. My sister, mother and I combated this by trying really hard to support each other and make each other happy. Since we emigrated from the UK to the US, we had no relatives near us to celebrate with. Parcels and cards crossed the ocean but transatlantic phone calls were expensive and notoriously hard to connect (we would sit at the phone dialing and redailing the numbers until it would finally go through) so for the most part we were on our own.
Don't get me wrong, as long as dad was locked away for the duration, the holiday was quite nice. We baked together, went caroling with our friends from school, went to a neighbor's party every year and bought each other the best presents we could afford. I do have a lot of good memories from that time period.
Then marriages happened and this broke our little gang up. We had to travel all over the state to visit all the different families. Over the years this settled into Christmas eve with hub's family, Christmas day by ourselves and Boxing Day with my family. It worked great until hub's family had a monumental blowout and everyone stopped talking to each other. Then shit got weird. And lonely. Things deteriorated even more when I got in a fight with my mom and sister and they stopped talking to me for a few years.
Due to hubs being a sound guy, he was inevitably working during the holiday season so he wasn't around to do anything. My mom and sister moved far away so I couldn't see them anymore. So no more going out to do Christmas stuff. I wasn't near anyone and we were barely speaking so I didn't know what presents to get anyone. I didn't get to go to parties. No more wrapping presents with my sister and mom until the wee hours of the morning while drinking sherry. I was really by myself for a while. And I was really miserable around the holidays. It got so bad I quit decorating the house. I seemed to be the only one that cared about Christmas and hubs and kid wanted nothing to do with it so I quit. I went on Christmas strike for many years.
It got so bad I started putting up a metal lawn ornament Christmas tree instead of a real one. I called it my minimalist tree. It was painted white metal with small white lights. I added sky blue balls and called it a day. The only parties I went to were office ones. We had never stayed in one place long enough for me to make real friends anywhere. I moved on average every year for almost ten years running. Hubs HATED Christmas music so I couldn't even play it in the house never mind go to a concert or go caroling. I don't blame him. He did two to three shows a day of Pop's Christmas shows for two to three months in a row for ten years. I would hate the stuff too if I had to listen to that. But I missed going out to do Christmas stuff.
However, one thing I did do was send out cards. It made me feel loved to get all those cards back. I hated sitting down to make them out, but man did I LOVE getting ones in the mail. Because I did this every year I was still sending cards to people I worked with decades prior. It was often the only contact I had with these old acquaintances.
Since I've been sick, I haven't been able to send cards for a couple of years now. I did manage to get out New Year's cards with short notes in them last year but I missed a couple of years prior to that. I was just too sick to sit at a table for long enough to write out cards. It is amazing how many people don't send one if you don't send them one. I've been too sick to notice or care until this year. This year I've been putting off writing cards. Cards are bothering me on several levels.
Unlike Americans, I keep cards. I'm from a traditional Victorian family and we save all of our correspondence. It used to be the done thing. I must say that it is a real pleasure to read over a letter that is ten or twenty years old or run across a letter from a deceased relative. This is one of the few things I worry about with the invention of the internet and email. That body of correspondence that brought personal pleasure and a source of historical information is gone in the ether. But I digress...
Last year my son and husband decided that we needed to decorate for Christmas. Hubs brought home a tree from a tree farm. My kid put up the decorations. I sat and marveled at the whole thing. We went for a drive to look at the Christmas lights our neighbors put up. And Christmas turned out pretty good despite my trip to the ER later that night.
This year I'm well enough that I want to decorate and do cards. However, trying to get hubs, kid and me to do something together at the same time is like herding cats. It just doesn't go well. The weekend I was looking forward to buying a tree, putting it up and decorating it with hubs and kid, I was well enough to participate. I came out of the bedroom to find hubs had taken his work vehicle apart and was in the middle of installing a widget on it. Kid was on the Xbox and didn't want any human contact because he had just finished finals. When we finally got into a vehicle to get a tree, it was dark. I was looking forward to going to a nice large place where we could wander around and look at a variety of trees and pick out something nice. Hubs literally drove us around the corner to a small nursery where he heard they had cheap trees. They only had a few out of their wrappings and they hadn't been standing upright so the limbs hadn't dropped and you couldn't tell their shape. Since we were the only ones there, the kid running the stand was picking out trees for us to look at and it was about ten degrees outside. I didn't want to be the picky female so I agreed to the second tree that the kid picked up that hubs liked. I climbed into the car while hubs paid and kid strapped it to the roof for the half mile trip back home. The entire process took about 20 minutes. Hubs pulled into the gas station to take a family photo for me to post to Facebook of us getting our tree. Insert rude noise here. The pic is still on my kid's phone.
The poor tree spent the next three days upside the garage. It got covered in snow and then ice. Hubs finally brought it into the garage so it could melt before being brought into the house. It took another week for hubs to get lights on to it. On one of my good days where I wasn't doing something else, I managed to go through the Christmas ornaments and sort which ones we were keeping and which ones were getting pitched. I haven't been well enough to do this for years. This is my fourth Christmas with CFS. Ugh. Then a snowstorm hit which put me in bed. Then a doctor's appointment. Then another snow storm. The tree still isn't decorated and I'm very sad about it. I does look good with the lights on though. I'm happy that we have a nice tree.
I still haven't done cards though. I'm putting it off. While unpacking the ornaments I found a card from hub's mom. It was from ten years ago and she said that she was looking forward to coming over for Christmas dinner and seeing us. She passed away the year before I got sick. I cried and cried. I miss her. I miss spending holidays with her.
Yesterday, I saw a Facebook post that my friend from college was laid to rest on campus. A small group of fellow students went there with the family to spread some of her ashes under the trees next to the lake. I cried some more. I will miss her too.
I miss so much. I miss baking with my sister. I miss wrapping presents with my mom and sister. I miss having large family dinner with hubs mom and my family all crammed around my small dinner table eating off family heirloom fine china. I miss going to huge family gatherings. I miss going to Christmas parties. I miss having so many people over that I have to set up a kids table. I miss having the house festooned with decorations.
I sat down to write cards today. I went through my Rolodex. It is sad how many people no longer contact me since I got sick. People I had considered friends but have left to go on with their active lifestyles. Family that has passed away. Friends that have passed away. This year is weird to me. It is a season of loss but at the same time I'm also letting go of that Rockwell painting in my head. That perfect family that doesn't exit. It has never existed. I can feel the holiday shifting beneath me. I'm grieving my losses but at the same time celebrating my many small victories. I'm doing so much better than last year at this time. This whole year has been better for me from a health perspective. My marriage is doing better and is slowly healing. My relationship with my son is getting deeper and we find ourselves talking often about all sorts of subjects including very personal ones. I have a great new car. I'm walking short distances. I have all sorts of cool internet friends. All I need is a party to go to.
I'm going to write some cards now. I feel a bit better after writing this long missive. I hadn't intended it to get this long but once I started, it all had to come out. Looking at the bright side I only have a handful of cards to write. This won't take long. Peace out!
Monday, March 11, 2013
Isolation
I can NOT begin to express in words the isolation that comes with being this sick for this long. People in the US are encouraged to hang out with others that are healthy, uplifting, upbeat, active, etc. We are supposed to go out and DO things together. We aren't supposed to hang out with people that are old and/or sick. Those people are used up. They have outlived their usefulness and couldn't possibly have anything to contribute to us as human beings.
I thought I had some to terms with this. I thought I was okay with staying at home and being on my own. But, I'm learning slowly, as this drags on, that I'm not. I'm not okay with spending months in the house only seeing my son, my husband, my son's girlfriend, my doctors and the vendors at the farmer's market. I'm not okay with my chiropractor knowing me better than my own brother. I'm not okay with knowing more about the trip the IV nurse just went on than the trip my sister took. I'm not okay with seeing my doctor more often than my friends.
The last time family was here was three months ago. The last time a friend was here was last summer. The last time I watched a movie with a friend in my OWN house was several years ago. I haven't seen one with a friend outside the house since before being sick. The only time I saw friends on a regular basis last year was when I commandeered them to drive me to doctor appointments. This was the only time I had contact with them. Within three years I have had exactly six visits from friends that were purely for social reasons. The count might double if you include people stopping by to pick something up and staying for a chat. Normally I'm okay with it. Being extremely introverted helps. Being extremely sick helps.
But today. Today. I'm in tears. I was recently reminded that my skating buddies have moved on without me. I just read an article about the abandonment of the old in retirement communities. I just wrote a Facebook post about dealing with the changes in my life since getting sick. And then I saw this video:
And I'm in tears. To think that people would do this for us. To think that people that don't know us, that were never our friends would do this for us. I am astonished. And in tears. It doesn't take much to help those of us that are housebound. Just call once in a while. Stop in once in a while. Bring over a coffee or tea. Or take us for a virtual walk. I would LOVE that! I miss being outside so much. I miss being active. I miss being with people. The internet helps but it isn't the same as real human contact. As human beings, we need it to thrive. The biggest loss for me being sick is the loss of human contact.
I thought I had some to terms with this. I thought I was okay with staying at home and being on my own. But, I'm learning slowly, as this drags on, that I'm not. I'm not okay with spending months in the house only seeing my son, my husband, my son's girlfriend, my doctors and the vendors at the farmer's market. I'm not okay with my chiropractor knowing me better than my own brother. I'm not okay with knowing more about the trip the IV nurse just went on than the trip my sister took. I'm not okay with seeing my doctor more often than my friends.
The last time family was here was three months ago. The last time a friend was here was last summer. The last time I watched a movie with a friend in my OWN house was several years ago. I haven't seen one with a friend outside the house since before being sick. The only time I saw friends on a regular basis last year was when I commandeered them to drive me to doctor appointments. This was the only time I had contact with them. Within three years I have had exactly six visits from friends that were purely for social reasons. The count might double if you include people stopping by to pick something up and staying for a chat. Normally I'm okay with it. Being extremely introverted helps. Being extremely sick helps.
But today. Today. I'm in tears. I was recently reminded that my skating buddies have moved on without me. I just read an article about the abandonment of the old in retirement communities. I just wrote a Facebook post about dealing with the changes in my life since getting sick. And then I saw this video:
And I'm in tears. To think that people would do this for us. To think that people that don't know us, that were never our friends would do this for us. I am astonished. And in tears. It doesn't take much to help those of us that are housebound. Just call once in a while. Stop in once in a while. Bring over a coffee or tea. Or take us for a virtual walk. I would LOVE that! I miss being outside so much. I miss being active. I miss being with people. The internet helps but it isn't the same as real human contact. As human beings, we need it to thrive. The biggest loss for me being sick is the loss of human contact.
Monday, October 29, 2012
Hello Sandy!
Prepping for a potential disaster is a lot of work when you are well. Having CFS makes it damn near impossible. I am totally dependent upon my husband and son to do all the work. Hubs put all the yard stuff away. Luckily we already had tons of food in the house and gas for the grill if the power goes out. Although BBQing during a hurricane doesn't sound like too much fun. The one thing that fell through the cracks was the refill on my sleep meds. Yup, I ran out. We're crossing our fingers that my regular pharmacy is open tomorrow morning otherwise it is going to be a rough couple of nights. Luckily it isn't anything more serious.
I'm not in the direct path. Fortunately we are much further north. Our biggest problem is going to be high winds. We aren't even getting that much rain, only 2" predicted. I am also fortunate to live in a town with a municipal light department which means we aren't dependent on National Grid or NStar for service. Woohoo!! If we do loose power it will only be for a few hours rather than days.
Hubs has the day off work and kid's school is canceled so we get to drive each other nuts tomorrow. Particularly if the power goes out and we will be forced to entertain each other. Maybe I'll just sleep all day.
I'm not in the direct path. Fortunately we are much further north. Our biggest problem is going to be high winds. We aren't even getting that much rain, only 2" predicted. I am also fortunate to live in a town with a municipal light department which means we aren't dependent on National Grid or NStar for service. Woohoo!! If we do loose power it will only be for a few hours rather than days.
Hubs has the day off work and kid's school is canceled so we get to drive each other nuts tomorrow. Particularly if the power goes out and we will be forced to entertain each other. Maybe I'll just sleep all day.
Wednesday, October 24, 2012
NO!!
Warning: Profanity laced rant enclosed.
Hubs: Our upload speed is 1/6 of our download speed for the internet.
Me: Yup. It is very typical for the provider to have a much slower upload speed than download speed.
Hubs: But it is more than one half. Could that be why the delay is occurring during my online gaming?
Me: Yes. It certainly is. You need to get the original contract and see what they promised you. People have sued them in the past for breach of contract for not providing the services as stated.
Hubs (with enthusiasm): I'll get right on that. I'm calling them tomorrow and get this fixed.
Me (to his receding back): You might want to look at the Medicare info instead. It is a bit more important than whether you can shoot at zombies before getting killed.
(long delay: I go back to internet surfing)
Hubs (returns to room): I've got an idea, why don't you call them?
Me: I can't.
Hubs: Why not? Just get a list of questions together and have them explain it to you.
Me: I can't. It doesn't work that way. The booklets explain everything I just can't read them or absorb the information.
Hubs: So hire someone to! Get a lawyer to do it for you.
Me: It isn't a lawyer problem. It is our health care. We need to figure out what plans that we need and I can't do that.
Hubs (really agitated): I don't want to. I already do the laundry, the garbage, the dishes...
Me (cutting him off): I know you do and I appreciate that but I just can't do this. I can't read it. I can't understand the information. It is too much and too complicated.
Hubs (really pissed off): I don't want to do it. (storms off)
So now what? My insurance policy covers my entire family. I'm getting pushed onto Medicare by the long term disability company. This isn't supposed to happen until Dec1st but the last letter I got from the gov says it starts Nov1st. I have no idea if my family will have no coverage in a week and a half. I told hubs he needed to take care of this when the booklets started arriving in the mail months ago. I told him I couldn't do this. That I can't understand it. He has ignored it.
What am I supposed to do when someone refuses to help me. I mean flat out refuses and he is supposed to be my go to person. My fucking SPOUSE who is supposed to be my partner and helper is refusing to help with something that is critical to not just me but the whole family!! What do I say to people? Hi, you barely know me but can you help me figure out my Medicare because my husband is refusing to have anything to do with this? Yes, I know it is vital to my continued health care, access to doctors and prescription medications. Yes, I know my child and husband will be affected by the changes. No, he is refusing to help and I can't read or make sense of this.
So, he cares more about the fucking internet speed for his online gaming than health insurance for his family. How does that make me feel? A burden. Useless. Unloved. Unimportant. I am SO VERY ANGRY right now. I cried a lot but it didn't help at all. I'm really ANGRY. FURIOUS. Rip someone's head off angry.
I'm going to have to ask for help from my teenage son. He shouldn't be doing this. I hate asking but I can't think of anyone I can ask for help from. Who is supposed to step in when a spouse won't help with something as fundamental as health care insurance? My brother? My sister? They have crap of their own to take care of. What is hubs doing? Shooting zombies!! What the FUCK is wrong with this picture!?!
Hubs: Our upload speed is 1/6 of our download speed for the internet.
Me: Yup. It is very typical for the provider to have a much slower upload speed than download speed.
Hubs: But it is more than one half. Could that be why the delay is occurring during my online gaming?
Me: Yes. It certainly is. You need to get the original contract and see what they promised you. People have sued them in the past for breach of contract for not providing the services as stated.
Hubs (with enthusiasm): I'll get right on that. I'm calling them tomorrow and get this fixed.
Me (to his receding back): You might want to look at the Medicare info instead. It is a bit more important than whether you can shoot at zombies before getting killed.
(long delay: I go back to internet surfing)
Hubs (returns to room): I've got an idea, why don't you call them?
Me: I can't.
Hubs: Why not? Just get a list of questions together and have them explain it to you.
Me: I can't. It doesn't work that way. The booklets explain everything I just can't read them or absorb the information.
Hubs: So hire someone to! Get a lawyer to do it for you.
Me: It isn't a lawyer problem. It is our health care. We need to figure out what plans that we need and I can't do that.
Hubs (really agitated): I don't want to. I already do the laundry, the garbage, the dishes...
Me (cutting him off): I know you do and I appreciate that but I just can't do this. I can't read it. I can't understand the information. It is too much and too complicated.
Hubs (really pissed off): I don't want to do it. (storms off)
So now what? My insurance policy covers my entire family. I'm getting pushed onto Medicare by the long term disability company. This isn't supposed to happen until Dec1st but the last letter I got from the gov says it starts Nov1st. I have no idea if my family will have no coverage in a week and a half. I told hubs he needed to take care of this when the booklets started arriving in the mail months ago. I told him I couldn't do this. That I can't understand it. He has ignored it.
What am I supposed to do when someone refuses to help me. I mean flat out refuses and he is supposed to be my go to person. My fucking SPOUSE who is supposed to be my partner and helper is refusing to help with something that is critical to not just me but the whole family!! What do I say to people? Hi, you barely know me but can you help me figure out my Medicare because my husband is refusing to have anything to do with this? Yes, I know it is vital to my continued health care, access to doctors and prescription medications. Yes, I know my child and husband will be affected by the changes. No, he is refusing to help and I can't read or make sense of this.
So, he cares more about the fucking internet speed for his online gaming than health insurance for his family. How does that make me feel? A burden. Useless. Unloved. Unimportant. I am SO VERY ANGRY right now. I cried a lot but it didn't help at all. I'm really ANGRY. FURIOUS. Rip someone's head off angry.
I'm going to have to ask for help from my teenage son. He shouldn't be doing this. I hate asking but I can't think of anyone I can ask for help from. Who is supposed to step in when a spouse won't help with something as fundamental as health care insurance? My brother? My sister? They have crap of their own to take care of. What is hubs doing? Shooting zombies!! What the FUCK is wrong with this picture!?!
Monday, July 23, 2012
A Little Tumble
CFS bit me in the ass yesterday but not in the way you would expect.
I was out on the deck grabbing a pillow to do a little sunbathing. I was close to the deck edge and turned suddenly. I don't know if I got dizzy or over confident but I stepped down suddenly and without looking. I missed the step and ended up on my back in the grass staring at the sky wondering what the heck just happened.
Somehow I managed to twist my right ankle, scrape my right knee, scrape the top of my left foot and wedge the corner of the bottom step under my left knee cap. I had a great case of road rash and had to pick rocks out of the bloody gashes. And I was in a HUGE amount of pain.
I managed to get up. For some reason I managed to not curse my head off. I hobbled over to the garden hose and did a preliminary wash off. I hobbled into the house and had kids' girlfriend run and get the Bactine out of the bathroom. I liberally washed both wounds with it. Dabbing blood and the cut. I tried the knee out to make sure I could flex it because I knew it would stiffen up very quickly.
Of course hubs was in another state doing autocross racing at the time. I knew if I called him he would freak out so I waited. I wasn't dying. The walk in clinic was open until 8pm. I could just patch it up and wait until later in the day to let him know that I would not be making dinner after all.
Thank goodness the kid's gf was around. She was really helpful. She fetched things for me and offered to help in anyway she could. Unfortunately she can't drive so a quick trip to the clinic was out of the question.
I finally got the nerve to call hubs and told him what had happened. He said he would be home in about two hours and would figure out what to do then. When he arrived he told me that the clinic would probably blow me off since it was late on a Sunday night. I would prefer to see my ortho guy anyway. He has been great with my joint problems in the past. I also wanted to see how I felt in the morning.
When I got up this morning, I had deep jarring pain when I put weight on my leg. Not the surface pain of the cut but deeper joint pain. Not good. I peeled the bandages off and my entire knee was swollen and pink with road rash. At least it wasn't infected yet. I put ice packs on it when I could tolerate them and called my primary care doctor. He was on vacation. I asked the secretary if I could see my ortho doc and she arranged it for me. Yay!!
My kid miraculously had the day off work so he was available to drive me. The doc was worried about my knee as well. She said it didn't look good and the fact I hooked the knee cap with the step corner didn't bode well. I had a series of x-rays done by the ortho specialist consisting of a bunch of odd angles so they can see all sides of the joint and even underneath the knee cap itself. No fractures!! Yay!! So I have a nice bone bruise on the left knee and a slight sprain on the right ankle. They gave me a really cool ice pack to wear and I have to go back in two weeks so they can check on me.
I'm not normally a klutz but this illness has turned me into one. I am constantly dropping things, knocking things over and now apparently falling. This is bad. It makes me worried. Can I no longer be left alone? Is my decision making, balance, and vertigo bad enough that I can't be trusted to be by myself anymore? This seriously worries me. Probably more so since a good friend just lost his mother to a nasty fall. She couldn't catch herself and got a nasty concussion that finally took her life. Falling is serious. If I hadn't rolled over and landed in the grass I would have faceplanted on the stone patio. It could have been way worse than it was. I came one foot away from having a nasty concussion. As it is my rib cage is really sore. I can hardly wait until my chiropractor comes back from vacation and puts everything back where it belongs.
But falling. Now what do I do? I'm usually pretty good about going slowly, looking where I'm going, looking at the steps before I go up or down them. But there was that little lapse of judgement. In typical ADD CFS fashion I got distracted by a spider hanging off the edge of the cushion I had picked up. Instead of looking where I was going, I span around too fast and literally stepped into oblivion.
So I'm paying for that now with pain and swelling and bleeding. Thank goodness it wasn't worse. But now what do I do? Do I have to have someone come and stay with me every time hubs goes out of town? How embarrassing. I'm only 50. Gads! Until this point I never felt like a burden to my family. Even at my sickest. I don't want people worrying about me. For some reason that bothers me. I don't want to burden family with unnecessary worry. I always thought of myself as independent, even with hubs having to take over the bills and the driving and the housecleaning. I always knew I could manage on my own if he wasn't around. It was nice that he was doing it but I would figure out how to get along if he buggered off. But now. Now. With the falling incident I can't possibly be on my own. Someone has to be around. Someone HAD to check up on me. If I had knocked myself unconscious yesterday how long would I have laid on the ground until someone found me? An hour? Two? Three? Kid's gf was inside the house when I fell. She had no idea that I fell. I had told her I was going to lie down for a while. She wouldn't have come looking for me for a long time.
This makes me feel so old and dependent and needy. Ugh. Now I'm worried.
I was out on the deck grabbing a pillow to do a little sunbathing. I was close to the deck edge and turned suddenly. I don't know if I got dizzy or over confident but I stepped down suddenly and without looking. I missed the step and ended up on my back in the grass staring at the sky wondering what the heck just happened.
Somehow I managed to twist my right ankle, scrape my right knee, scrape the top of my left foot and wedge the corner of the bottom step under my left knee cap. I had a great case of road rash and had to pick rocks out of the bloody gashes. And I was in a HUGE amount of pain.
I managed to get up. For some reason I managed to not curse my head off. I hobbled over to the garden hose and did a preliminary wash off. I hobbled into the house and had kids' girlfriend run and get the Bactine out of the bathroom. I liberally washed both wounds with it. Dabbing blood and the cut. I tried the knee out to make sure I could flex it because I knew it would stiffen up very quickly.
Of course hubs was in another state doing autocross racing at the time. I knew if I called him he would freak out so I waited. I wasn't dying. The walk in clinic was open until 8pm. I could just patch it up and wait until later in the day to let him know that I would not be making dinner after all.
Thank goodness the kid's gf was around. She was really helpful. She fetched things for me and offered to help in anyway she could. Unfortunately she can't drive so a quick trip to the clinic was out of the question.
I finally got the nerve to call hubs and told him what had happened. He said he would be home in about two hours and would figure out what to do then. When he arrived he told me that the clinic would probably blow me off since it was late on a Sunday night. I would prefer to see my ortho guy anyway. He has been great with my joint problems in the past. I also wanted to see how I felt in the morning.
When I got up this morning, I had deep jarring pain when I put weight on my leg. Not the surface pain of the cut but deeper joint pain. Not good. I peeled the bandages off and my entire knee was swollen and pink with road rash. At least it wasn't infected yet. I put ice packs on it when I could tolerate them and called my primary care doctor. He was on vacation. I asked the secretary if I could see my ortho doc and she arranged it for me. Yay!!
My kid miraculously had the day off work so he was available to drive me. The doc was worried about my knee as well. She said it didn't look good and the fact I hooked the knee cap with the step corner didn't bode well. I had a series of x-rays done by the ortho specialist consisting of a bunch of odd angles so they can see all sides of the joint and even underneath the knee cap itself. No fractures!! Yay!! So I have a nice bone bruise on the left knee and a slight sprain on the right ankle. They gave me a really cool ice pack to wear and I have to go back in two weeks so they can check on me.
I'm not normally a klutz but this illness has turned me into one. I am constantly dropping things, knocking things over and now apparently falling. This is bad. It makes me worried. Can I no longer be left alone? Is my decision making, balance, and vertigo bad enough that I can't be trusted to be by myself anymore? This seriously worries me. Probably more so since a good friend just lost his mother to a nasty fall. She couldn't catch herself and got a nasty concussion that finally took her life. Falling is serious. If I hadn't rolled over and landed in the grass I would have faceplanted on the stone patio. It could have been way worse than it was. I came one foot away from having a nasty concussion. As it is my rib cage is really sore. I can hardly wait until my chiropractor comes back from vacation and puts everything back where it belongs.
But falling. Now what do I do? I'm usually pretty good about going slowly, looking where I'm going, looking at the steps before I go up or down them. But there was that little lapse of judgement. In typical ADD CFS fashion I got distracted by a spider hanging off the edge of the cushion I had picked up. Instead of looking where I was going, I span around too fast and literally stepped into oblivion.
So I'm paying for that now with pain and swelling and bleeding. Thank goodness it wasn't worse. But now what do I do? Do I have to have someone come and stay with me every time hubs goes out of town? How embarrassing. I'm only 50. Gads! Until this point I never felt like a burden to my family. Even at my sickest. I don't want people worrying about me. For some reason that bothers me. I don't want to burden family with unnecessary worry. I always thought of myself as independent, even with hubs having to take over the bills and the driving and the housecleaning. I always knew I could manage on my own if he wasn't around. It was nice that he was doing it but I would figure out how to get along if he buggered off. But now. Now. With the falling incident I can't possibly be on my own. Someone has to be around. Someone HAD to check up on me. If I had knocked myself unconscious yesterday how long would I have laid on the ground until someone found me? An hour? Two? Three? Kid's gf was inside the house when I fell. She had no idea that I fell. I had told her I was going to lie down for a while. She wouldn't have come looking for me for a long time.
This makes me feel so old and dependent and needy. Ugh. Now I'm worried.
Wednesday, June 27, 2012
Go Mum!!
Now for something completely different....
My Mum is going to be 80 years old this year. She is still skating. In fact she just particiated in the Adult Skate Week in Lake Placid. I used to attend this with her before I got sick. This is a video of the rehearsal for the group number that is performed in the show at the end of skate week. She is the short lady with silver hair. I am SO proud of her!! I wish I could have seen her in person but this is almost as good as being there. Her ice dance coach is the one who choreographed the number and makes a brief appearance in the video himself. Go Mum!!
Monday, December 5, 2011
Monday, September 19, 2011
Swing and a Miss
I had a bad week this week. So of course I avoided my blog once again. I get into avoidance/denial mode and this blog has become intertwined with my illness. So when I'm trying to deny my reality of CFS I avoid my blog. Hence no posts even when I have lots to say....
I've been very grumpy this week. For lots of reasons. I did too much last weekend and crashed. I had a tilt table test where I almost passed out which made me crash. My husband was gone all week due to work. Until tonight no one has visited for a long while. I can't seem to convince anyone to drive me to places I would really like to go. When my kid was finally available it turned out that hubby had driven to work with my wheelchair in his trunk. I'm just getting frustrated at not being able to do stuff or go places. I'm annoyed that I have to beg family members to drive me places and if I hint at trips to friends they are too busy to go. I'm tired of being stuck in the house. I only get to go out for groceries and doctor appointments. No fun things. It also ticked me off that I spent the better part of two days lying in bed. I was listening to my audio book which was fun but I didn't get the miraculous recovery I was hoping for. I still felt like crap today and now I'm also sick of lying down. Because I'm grumpy I cheated on my diet and made my body feel extra crappy. So blah...
I'm grumpy and in a pissy mood. Hopefully I'll have the tilt table test results in a few days and I can write about that. In the meantime I've ordered the GAPS diet book, purchased some grass fed cow's milk (yum!) and am settling in to watch Star Trek Enterprise series.
As an aside I do recommend Discovery of Witches but get the print edition if you can read books. The audio version keeps knocking me out cold. Something about her voice....
I've been very grumpy this week. For lots of reasons. I did too much last weekend and crashed. I had a tilt table test where I almost passed out which made me crash. My husband was gone all week due to work. Until tonight no one has visited for a long while. I can't seem to convince anyone to drive me to places I would really like to go. When my kid was finally available it turned out that hubby had driven to work with my wheelchair in his trunk. I'm just getting frustrated at not being able to do stuff or go places. I'm annoyed that I have to beg family members to drive me places and if I hint at trips to friends they are too busy to go. I'm tired of being stuck in the house. I only get to go out for groceries and doctor appointments. No fun things. It also ticked me off that I spent the better part of two days lying in bed. I was listening to my audio book which was fun but I didn't get the miraculous recovery I was hoping for. I still felt like crap today and now I'm also sick of lying down. Because I'm grumpy I cheated on my diet and made my body feel extra crappy. So blah...
I'm grumpy and in a pissy mood. Hopefully I'll have the tilt table test results in a few days and I can write about that. In the meantime I've ordered the GAPS diet book, purchased some grass fed cow's milk (yum!) and am settling in to watch Star Trek Enterprise series.
As an aside I do recommend Discovery of Witches but get the print edition if you can read books. The audio version keeps knocking me out cold. Something about her voice....
Sunday, August 28, 2011
Batten Down the Hatches
This is my first big storm since getting sick. Prep work landed squarely in my husband's lap. He decided that the storm was no big deal and he wasn't going to do anything about it. Hence we have some food and supplies but not a lot. We have a gas grill and lots of propane so we can cook if we loose power. If I were mobile I would have purchased a few more items. Nothing is packed. An emergency bag is not put together. We aren't in a flood area or even expect tons of rain. We are getting high winds though. The chance of large trees falling are high. The chance of things becoming air borne are high. Hubby did put the patio furniture away and picked up the loose wood lying around the yard but our neighbors haven't. The back of my house is all windows and one of my skylights has been cracked for months. This could get ugly.
Growing up on Cape Cod we have both lived through many of these warning only to have nothing develop. I remember one storm when I was a kid when we were under voluntary evacuation and my dad refused to leave the house. Of course he was drunk at the time. Luckily nothing happened except a lot of rain.
I am hoping that it will again be nothing. I am worried about my son. He decided to visit a friend in NH and now he is stuck there. He has never been through a hurricane before. He thinks he can drive home tomorrow. He has no idea. I'm guessing he will be stuck there until Monday at the earliest. The eye won't even be in MA until 5pm tomorrow and then it moves in to NH where he is. He won't be able to drive at all. I hope he isn't stupid enough to try. So I'm crossing my fingers and watching lots of Netflix in the meantime. Wish me and my son luck.
Growing up on Cape Cod we have both lived through many of these warning only to have nothing develop. I remember one storm when I was a kid when we were under voluntary evacuation and my dad refused to leave the house. Of course he was drunk at the time. Luckily nothing happened except a lot of rain.
I am hoping that it will again be nothing. I am worried about my son. He decided to visit a friend in NH and now he is stuck there. He has never been through a hurricane before. He thinks he can drive home tomorrow. He has no idea. I'm guessing he will be stuck there until Monday at the earliest. The eye won't even be in MA until 5pm tomorrow and then it moves in to NH where he is. He won't be able to drive at all. I hope he isn't stupid enough to try. So I'm crossing my fingers and watching lots of Netflix in the meantime. Wish me and my son luck.
Friday, August 12, 2011
Island Vignettes
Having the entire world swirl around me as I attempt to step into a small motor boat. Clinging to my host for dear life waiting for my sense of balance to return. Disbelief sets in as I recollect being able to skate on single steel blades across the ice with no problem.
Getting a very wet butt as I travel to a small island on Sabago Lake in Maine in the rain. The phrase "time to pay the ferryman" pops into my head as I stare at my host's battered neon green Crocs resting on the bottom of the boat.
The very old boathouse with a new dock attached. My friend had built the dock over the summer and it is an engineering marvel. It is made from white cedar which glows even in the gray rainy dusk. It has room for the two motor boats and two lovely wooden benches so you can sit and watch the sunrise over the water.
The hundred year old main house with a large gathering room, kitchen and dinning area. The small sleeping cabins scattered around the outskirts of the property along the water's edge.
Book shelves lining the large living room. Picking up a book at random and finding that it is in Italian and published in 1893. I think I found the owner's parents' school books.
The hiss of propane copper sconces casting a soft yellow glow on the wood work. Barely enough light to read by but great for lazy discussions and story telling.
Kamikaze bugs flying into the propane lights and their bodies gliding slowly downwards to land in my cup of tea.
The gorgeous huge field stone fireplace. The Native American rug in front of it with rows of stylized corn woven into the pattern. The scattering of cane rocking chairs ringing the fireplace. Although it is inviting it is too warm for a fire.
The old wooden windows with hooks and eyes for latches. One set for open and one set for closed.
The ting of an extended spring and then the warm slap of the wooden screen door closing against the frame instead of hiss of the pneumatic piston and metallic smack of a modern door.
Sitting wrapped in a blanket, watching the sunrise from my wheelchair. I sat in it because it just happened to be parked next to the kitchen door the night before and it was the first outdoor seating I happened across.
Walking down to the new dock and watching it steam in the morning light as the evening rain evaporates. The pungent scent of cedar fills my nostrils.
Walking barefoot all weekend and feeling the soft brown pine needles between my toes.
Lying on my belly hanging off the edge of the dock watching the snails in the lake head for cover to get out of the noon day sun. This took quite a while.
Spending my morning energy reserves exploring the hundred year old buildings on the property: the boat house, the loft room above the boathouse, the carpentry shop, the sleeping cabins, the attic of the main house. Finding really old sets of drawers, really old books, a hand crank sewing machine, a trunk full of dress up clothes from the 1930s, a very old Red Cross Trunk, white enameled brass beds, lots of maps, old postcards people have left behind, National Geographics dating back to 1919.
Paper tracings of fish caught in the lake hanging on three hooks on the wall. The day, size, weight, type and fisherman's name all written on the paper outline. Some made by adults colored in to properly represent the fish and others written in crayon in a young child's scrawl. A history of fishing dating back to 1918. They dance constantly in the breeze from the lake.
Boating supplies hung up neatly on wooden pegs on one side of the boathouse with racks of boats on the other. Finding really old wooden water skis in the rafters.
Lying down on the daybed that our hosts had made for me. They had dragged a mattress from one of the sleeping cabins and put it on the built in bench seat under the windows in the main house so that I would be close to the only working bathroom on the island. I would open the window and the screen and lie propped up on pillows watching jet skis, water skiers, sailboats and lots and lots of birds with the breeze blowing in my face and the slap of water caressing my ears. I felt like I was lying down outdoors.
Pouring over Sibley's bird book trying to decide if I had just seen an Olive-sided Flycatcher or an Eastern Wood-Pewee hovering about three feet away from my nose.
My son hitting another milestone on his path to manhood: learning to start, run and steer an Evinrude outboard motor.
Watching my husband fly his kite from the motor boat as my son drove. There were too many trees for him to fly his kite on the island. When the wind was just right it looked like the kite had the boat in tow.
Sneaking out of the cabin in the middle of the night so that I could look at the stars where there is little light pollution. Not only did I see the Milky Way for the first time in several years but there were so many stars that I was hard pressed to find my familiar constellations. I did finally manage to pick out the Northern Cross. So many many stars. It was glorious! I snuck back to bed in the dark with dirty feet.
My husband snoring on a mattress on the floor. He didn't want to leave me by myself in the main house.
Rules of the house:
Getting a very wet butt as I travel to a small island on Sabago Lake in Maine in the rain. The phrase "time to pay the ferryman" pops into my head as I stare at my host's battered neon green Crocs resting on the bottom of the boat.
The very old boathouse with a new dock attached. My friend had built the dock over the summer and it is an engineering marvel. It is made from white cedar which glows even in the gray rainy dusk. It has room for the two motor boats and two lovely wooden benches so you can sit and watch the sunrise over the water.
The hundred year old main house with a large gathering room, kitchen and dinning area. The small sleeping cabins scattered around the outskirts of the property along the water's edge.
Book shelves lining the large living room. Picking up a book at random and finding that it is in Italian and published in 1893. I think I found the owner's parents' school books.
The hiss of propane copper sconces casting a soft yellow glow on the wood work. Barely enough light to read by but great for lazy discussions and story telling.
Kamikaze bugs flying into the propane lights and their bodies gliding slowly downwards to land in my cup of tea.
The gorgeous huge field stone fireplace. The Native American rug in front of it with rows of stylized corn woven into the pattern. The scattering of cane rocking chairs ringing the fireplace. Although it is inviting it is too warm for a fire.
The old wooden windows with hooks and eyes for latches. One set for open and one set for closed.
The ting of an extended spring and then the warm slap of the wooden screen door closing against the frame instead of hiss of the pneumatic piston and metallic smack of a modern door.
Sitting wrapped in a blanket, watching the sunrise from my wheelchair. I sat in it because it just happened to be parked next to the kitchen door the night before and it was the first outdoor seating I happened across.
Walking down to the new dock and watching it steam in the morning light as the evening rain evaporates. The pungent scent of cedar fills my nostrils.
Walking barefoot all weekend and feeling the soft brown pine needles between my toes.
Lying on my belly hanging off the edge of the dock watching the snails in the lake head for cover to get out of the noon day sun. This took quite a while.
Spending my morning energy reserves exploring the hundred year old buildings on the property: the boat house, the loft room above the boathouse, the carpentry shop, the sleeping cabins, the attic of the main house. Finding really old sets of drawers, really old books, a hand crank sewing machine, a trunk full of dress up clothes from the 1930s, a very old Red Cross Trunk, white enameled brass beds, lots of maps, old postcards people have left behind, National Geographics dating back to 1919.
Paper tracings of fish caught in the lake hanging on three hooks on the wall. The day, size, weight, type and fisherman's name all written on the paper outline. Some made by adults colored in to properly represent the fish and others written in crayon in a young child's scrawl. A history of fishing dating back to 1918. They dance constantly in the breeze from the lake.
Boating supplies hung up neatly on wooden pegs on one side of the boathouse with racks of boats on the other. Finding really old wooden water skis in the rafters.
Lying down on the daybed that our hosts had made for me. They had dragged a mattress from one of the sleeping cabins and put it on the built in bench seat under the windows in the main house so that I would be close to the only working bathroom on the island. I would open the window and the screen and lie propped up on pillows watching jet skis, water skiers, sailboats and lots and lots of birds with the breeze blowing in my face and the slap of water caressing my ears. I felt like I was lying down outdoors.
Pouring over Sibley's bird book trying to decide if I had just seen an Olive-sided Flycatcher or an Eastern Wood-Pewee hovering about three feet away from my nose.
My son hitting another milestone on his path to manhood: learning to start, run and steer an Evinrude outboard motor.
Watching my husband fly his kite from the motor boat as my son drove. There were too many trees for him to fly his kite on the island. When the wind was just right it looked like the kite had the boat in tow.
Sneaking out of the cabin in the middle of the night so that I could look at the stars where there is little light pollution. Not only did I see the Milky Way for the first time in several years but there were so many stars that I was hard pressed to find my familiar constellations. I did finally manage to pick out the Northern Cross. So many many stars. It was glorious! I snuck back to bed in the dark with dirty feet.
My husband snoring on a mattress on the floor. He didn't want to leave me by myself in the main house.
Rules of the house:
- Pack out what you pack in.
- Left overs will show up in the meals the next day.
- All dishes are washed in the morning after boiling a large kettle of water to sanitize them with.
- Be respectful of the island.
No running water. No electricity. No hot water. There is a hand crank water pump at the sink that brings up very good tasting well water. There is a cistern on the roof for the flush toilet and shower. When they empty a generator has to be fired up so that enough water can be pumped out of the well to fill the cisterns back up. The stove and lights were all propane.
Standing in the lake while my hostess pours water from a battered pewter jug over my head to rinse the shampoo out of my hair.
Sitting in the lake, naked from the waist up, slathering soap all over myself while the shampoo bottle bobs lazily in the waves next to me.
My husband helping me out of the lake. Then fetching my comb from the house while I stood half naked in the middle of the island with only a towel keeping me modest. My hair stayed soft for days afterwards. I hated to wash it again.
Eating purple green beans and lettuce picked from our hosts' garden earlier that day. Delicious.
"Bacon always tastes better on the island."
Finding fairy houses built by the little girls that had visited the island before us.
Being surrounded by a bevy of Robins playing chase. They are much skinnier than the Robins on the main land.
Our host playing horseshoes with my son and my son winning. Turns out he is very good at horseshoes. Who knew?
Sitting with my hostess talking about family history while I watch her knit a very fancy scarf out of gorgeous blue mohair yarn.
It was a glorious weekend.
Thursday, August 11, 2011
Restless
I've had another exhausting week. I had just started to recover from the trip to Maine and then I had to take my son shopping for his new apartment. Yes, he is old enough to do this himself. Fact is we are used to going shopping with each other and although he will never admit it I think he likes going with me sometimes. Also I hold the checkbook.
So I spent Monday in my wheelchair getting pushed around Target and Best Buy. We had a great time picking out kitchen items and computer gear. Along the way hubby joined us and we had dinner out. I was experiencing neuro symptoms by the time we hit Best Buy and hubby was starting to get cranky because of it.
We weathered it okay and came home with tons of bags. A very successful day. Of course I paid for this not only in money but in energy. I spent most of yesterday in bed. I would get up for about 30 minutes and then have to go lie down again. I listened to a lot of NPR.
Today I'm up and about. I did have to lie down for an hour after making eight phone calls (yes 8) to sort out my drug coverage that wasn't supposed to have ever been canceled. My brain was spinning by the time it all got sorted out. I can get reimbursed for all the meds I've bought since January which will be great. Not sure I can find all the receipts and I'm probably going to have to eat the Celebrex scrip since I didn't get pre-approval. But I couldn't tolerate not having it anymore. Eh, $140 for some pain relief. Totally worth it!
But I'm sitting here tonight with my usual CFS induced hot flashes and night sweats waiting for my son to come home. Except he isn't. He has signed the lease and is in the process of moving out. I miss him already and he hasn't even officially moved out yet. His bed is still here. He will be here tomorrow to drive me to the chiropractor but he is staying over a friend's house tonight. He is slowly but surely moving his stuff to Boston. Despite knowing this I catch myself waiting for him to burst in the door, drop the keys on the table and tell me he still has to go out running even though it is 2am.
He is cantankerous for a 17 year old but we've become close because of the CFS. If I hadn't been home for the last year we would never have talked so much. He is so quiet. He won't talk if you push him. You have to wait him out and then be prepared to talk on his timetable. When I wait I am rewarded with long thoughtful discussions on all sorts of topics both personal and worldly. We argue a lot but not the emotional kind of arguing (well maybe sometimes). Most of our arguing is verbal intellectual banter. Gun control vs concealed carry. Republican vs Democrat. Manual transmission vs automatic. The topics range all over the place and most of the time we have great fun bantering back and forth. He has a rich intellectual life and I sometimes wonder if the kids his age challenge him enough. I love talking with him. I'm going to miss him tremendously. I'm glad he is close and I hope he visits often even if he comes over to do his laundry.
I know this will be good for him. I hope he loves college and he gets along with his new roommate. But I'm going to miss him!
So I spent Monday in my wheelchair getting pushed around Target and Best Buy. We had a great time picking out kitchen items and computer gear. Along the way hubby joined us and we had dinner out. I was experiencing neuro symptoms by the time we hit Best Buy and hubby was starting to get cranky because of it.
We weathered it okay and came home with tons of bags. A very successful day. Of course I paid for this not only in money but in energy. I spent most of yesterday in bed. I would get up for about 30 minutes and then have to go lie down again. I listened to a lot of NPR.
Today I'm up and about. I did have to lie down for an hour after making eight phone calls (yes 8) to sort out my drug coverage that wasn't supposed to have ever been canceled. My brain was spinning by the time it all got sorted out. I can get reimbursed for all the meds I've bought since January which will be great. Not sure I can find all the receipts and I'm probably going to have to eat the Celebrex scrip since I didn't get pre-approval. But I couldn't tolerate not having it anymore. Eh, $140 for some pain relief. Totally worth it!
But I'm sitting here tonight with my usual CFS induced hot flashes and night sweats waiting for my son to come home. Except he isn't. He has signed the lease and is in the process of moving out. I miss him already and he hasn't even officially moved out yet. His bed is still here. He will be here tomorrow to drive me to the chiropractor but he is staying over a friend's house tonight. He is slowly but surely moving his stuff to Boston. Despite knowing this I catch myself waiting for him to burst in the door, drop the keys on the table and tell me he still has to go out running even though it is 2am.
He is cantankerous for a 17 year old but we've become close because of the CFS. If I hadn't been home for the last year we would never have talked so much. He is so quiet. He won't talk if you push him. You have to wait him out and then be prepared to talk on his timetable. When I wait I am rewarded with long thoughtful discussions on all sorts of topics both personal and worldly. We argue a lot but not the emotional kind of arguing (well maybe sometimes). Most of our arguing is verbal intellectual banter. Gun control vs concealed carry. Republican vs Democrat. Manual transmission vs automatic. The topics range all over the place and most of the time we have great fun bantering back and forth. He has a rich intellectual life and I sometimes wonder if the kids his age challenge him enough. I love talking with him. I'm going to miss him tremendously. I'm glad he is close and I hope he visits often even if he comes over to do his laundry.
I know this will be good for him. I hope he loves college and he gets along with his new roommate. But I'm going to miss him!
Friday, April 8, 2011
And....I'm Back
Had a great visit with my sister and Mom. They got me out of the house almost every single day they were here. I got to do girl stuff with them. We went around Bed and Bath, Kohls and Lane Bryant to name a few. I went on a wonderful shopping spree. We came home everyday with the car packed with goodies. They helped with making dinner, dishes, laundry. My sister even washed the rug in my bathroom. How awesome is that!?! I now have new cooking pots and dishes, new clothes and a squishy pad for my bed.
Most importantly though we sat and talked until we all cried. I now know that I am loved and whole even if I am sick. I have people that love and care for me and who will take care of me no matter what. I can't tell you what a difference that has made to me. I can't possibly describe how much better I feel knowing this. I am so very very lucky to have a family like this.
Most importantly though we sat and talked until we all cried. I now know that I am loved and whole even if I am sick. I have people that love and care for me and who will take care of me no matter what. I can't tell you what a difference that has made to me. I can't possibly describe how much better I feel knowing this. I am so very very lucky to have a family like this.
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