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Shock and OW!

I know that I said previously that I wouldn’t be seeing the neurologist for my EMG until September, but that changed.

I had such a terrible weekend. Saturday I basically did nothing because I felt so weak and tired. We went to bed at our regular time that evening, but at 12:30am Sunday morning, Hub and I were awakened by SCREAMING smoke alarms. In our house, all our smoke alarms are interconnected, so if one of them detects something every single alarm goes off. Not only does it make that horrendous alarm noise, but it also yells “FIRE! FIRE! FIRE!” I literally sat straight up in bed and hit Hub in the chest to wake him, then I turned the overhead light on. The dogs were freaking out, I was trying to get dressed, and Hub was trying to unhook himself from his CPAP machine, all while the alarms are screaming and yelling, and the dogs are running around the bedroom (we keep them closed in with us at night). We finally are semi-dressed and have shoes on and we open the door to the hallway and the screaming gets louder because there are more alarms in the hallway and in each of the bedrooms. I tried to get the dogs downstairs to give them treats (they always get treats when there are loud noises) while Hub tried to silence the smoke alarms (the dogs are still freaking out and Butthead races into her crate and won’t come out even though there’s an alarm nearly over her head still screaming). We don’t see or smell fire anyway, but Hub goes to investigate the whole house while I retrieve Butthead and rush the dogs outside and away from the noise. When Hub comes outside he tells me he has ripped down several of the detectors and the noise has stopped. I’m not happy, I’m afraid that there’s a fire in the attic or in the walls or there’s CO2 somewhere and that’s why the alarms went off. So at about 12:45, I find and call the non-emergency number for the fire department, and I explain what is going on. They take my address and say they’ll be out to the house shortly…and while we’re waiting the alarms go off again, so Hub rips MORE detectors off the ceiling and when the silence reigns again he takes the dogs into the basement so they can’t get out of the house and I go outside to wait for the fire department. To try to shorten this story–which really has nothing to do with this post–the firefighters come out to the house in the middle of the night, and after inspecting the entire house, they figure out that ONE of the smoke detectors has malfunctioned. And because it was wired into the “system”, it sets off all the other detectors in the house. Bless them, the firefighters were pretty awesome, and by 1:30am, they were walking back down our driveway in the darkness to load back up onto the firetruck they had left in the street. We were awake, trying to re-settle the dogs and ourselves, until about 2am.

Okay, so Sunday night I pretty much had a bad breakdown. I was just sobbing over how bad I was feeling and how tired I was and how afraid I was. I felt like I was getting worse, that my weakness was worse, my fatigue was worse, my imbalance was worse, and that now I was having trouble with my hands/arms and not just my legs.

For only the second time in the four and a half years I’ve been seeing T, I actually contacted her to seek guidance and help after-hours (or out of a normal session). The only other time I’ve done that is when my mother died. I am so grateful and so lucky that she took the time to talk to me in email (which is how I contacted her). I can’t say anything got resolved or that I even felt “better” in that moment, but knowing someone was out there to reach for–and who would reach back–was enormously helpful. Yes, Hub was here and he was being supportive, but this time it took a more confident and experienced communication.

When I finally caught my breath, I was so exhausted from struggling during the day and crying for hours that I went to sleep at 9pm. When I woke up the next morning, I called to see if my primary doc could see me, even though I didn’t think it would be helpful. They were able to fit me in just before lunchtime, and Hub took time off of work to go with me. After that phone call, I called the neuro’s office to see if he had any cancellations where he could fit me in for my test. The receptionist said no right away, because she had just gotten off the phone with someone else asking the same thing. So I asked to leave a message for my doctor, and I told him I was feeling worse and that I was having trouble with my hand/arm. He called within thirty minutes and fit me in for the EMG for two days later (that’d be today).

I went to my primary, who said she didn’t know what else to do for me except to send me to see a sleep doctor to see if I was having some kind of sleep disorder, and also to an infectious disease doctor to talk about Chronic Fatigue Syndrome. We were sitting in her office and I was so damn tired and frustrated that I literally put my head down on the edge of her desk and tried not to cry. She asked me what was going on and I told her, I was exhausted, frustrated, and scared. She immediately asked me if I was depressed. I was both annoyed and frustrated with this, because ANYONE in my shoes, with this length of exhaustion and weakness, and not knowing what was wrong, would be afraid and sad and upset. I thanked her for the offer but said I wasn’t ready to do that right now. She told me to try to stop focusing on my symptoms because I would surely make them worse by doing so, and to continue with my neuro appointment.

After that, we ran off to get my blood work done for the neuro and then we went home. Fast forward (cuz this is soooooo long), I spent most of today trying not to think about the test and/or what it might or might not say. I semi-obsessively check my laptop to see if my blood work has come in while trying not to spend time searching Dr. Google. We finally head off to the neuro office and within about ten minutes we are back in the testing room. I had read a little about the test(s) and heard both that it was no big deal and that it hurt like a mo’fo. I think I ended up somewhere in the middle.

The neuro doctor is very quiet in general, so there was almost no talking. The room had to be like 85 degrees, which I assume was on purpose because some of the testing is on muscles and maybe the heat keeps them relaxed? The first part of the test was where they put some thingys on you and then send an electric shock through certain nerves. The second part they use needles, stuck into your muscle, to record some kind of feedback. I asked what the needles were like and was told they are thinner and shorter than acupuncture needles. When he started zapping me with electricity, I asked if the needles hurt more or less, and he said “there’s no electricity with the needles” and went back to his zapping. So after another few minutes of silence and him randomly saying “zap here”, I ask him if his patients say the electricity is worse or the needles, and he says “it goes both ways.” *sigh*

The zaps range from a slight sting to a full-on-stick-your-fingers-in-an-outlet zap to OH SHIT THAT HURT LIKE A MO’FO. Fortunately, they are pretty quick zaps–up and down both legs in multiple places and along one arm and hand–and within about forty minutes we are moving on to the needle part of the test. He actually started with my arm and it really wasn’t all that bad, as long as I didn’t look at what he was doing. When he moved to my first leg, it was fine until he went into the inside of my calf and then it HURT. Especially he had trouble finding the right spot to be in and he had to sort of shift it around and push harder and that was pretty bad. The same issue happened with the other leg, but then we were pretty much done. After I got dressed, I asked him if he saw anything and he only said, “nothing jumped out at me” and said he’d have to go through all the data that had been collected during the test in the computer. I asked if there was anything I should or shouldn’t be doing, and he only said to stay hydrated and to rest. He scheduled us to come back for a follow-up for next Wednesday, so I have a week to sit and wait…

Tomorrow morning I go in for my CT Scan for my cancer follow-up. My father is driving me because Hub has to be in the office and I feel so weak and off-balance that I am afraid to drive myself. Friday I have a massage therapy appointment, which I hope I can get to, and I might have to have my father drive me again. I had cancelled my PT appointment for this past Monday because I didn’t think I’d be able to do it. I hope I can return to it this coming Monday, because I need to continue to try to make progress on my shoulder.

For now, I have a headache and I think I need to go to sleep. I have to get up early to start drinking the crap for my CT Scan, so off I go.

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Exclude me?

My last appointment with T, I was telling her how horrible I’ve been feeling physically again. Among the conversation–other than grief and emotional issues–she mentioned that she had gone onto an exclusion type of diet. She’s been having some gastro issues, along with her fibro and post-shingles issue. I don’t know how SHE got onto the idea of doing a food change, but she mentioned to me that she was doing it and how well it was working for her.

I have already eliminated gluten due to a wheat allergy. In the past three months or so, I have cut out a majority of dairy in the form of cheese (I could never have imagined!), though I have not been entirely strict about it. Mostly I cut cheese out because I felt like I was eating it daily because I was accustomed to eating it and not so much because I was enjoying it. So I have changed to eating cheese when I want it–which isn’t as much as I had thought–and similarly with other dairy items. Again, I didn’t cut it all out, I just cut back a lot. Maybe 70% less than before.

The exclusion diet that T had been trying was something called the Whole30. I’ve been reading about it and learning the rules, and Hub and I have decided to give it a try. What makes it less…stressful, is that they suggest you do this for 30 days and then start re-introducing “non-compliant” foods one at a time to see what kind of reactions you have. When I say “reactions” this time, I mean physical and emotional reactions, as well as digestive/allergic reactions. Apparently Whole30 excludes all grains (including corn), legumes, dairy, certain oils, and added sugars (no matter if it’s real or fake sugars). They also urge people to eat as clean as possible, with organic (and hormone-free, and non-gmo, and humanely raised) meats, fruits, and veggies. Of course that can be difficult for a lot of people, both in terms of access and budget, so they suggest you do the best you can within your circumstances.

Generally speaking, Hub and I eat pretty balanced meals at dinner. We cook a lot, mostly because of my wheat issues and Hub’s diabetes. What will be more difficult is breakfast (which I don’t eat and I have a tolerance issue with eggs, which mostly is what they recommend for breakfast) and lunch. I don’t eat or like breakfast foods, so I am concerned about how to handle that. I eat split pea soup with mushrooms every day for lunch, with little variation. It keeps my bowels working well and it also means I don’t have to THINK about what to eat every day. On the Whole30, no legumes means no split peas. Hub eats a lot of dairy and lots of bread (and grains) and cereal, especially for breakfast. He eats lunch out when he’s at the office more than he takes food from home, which means more adjustments for him.

Although I’m worried about what I’m going to eat, I feel like it’s going to be easier for me in most instances than for Hub. I don’t eat out nearly as much as he does (mostly once a week so we can spend time with my father), I don’t eat hardly any bread–and can give up the stuff I eat without any problem–and I don’t eat cereal. I can more easily adjust to eating no added sugar because I don’t add sugar to anything except tea, which I rarely drink. (And when I say no added sugar, I mean NO SUGAR in any ingredient in any form in any item with the exception of naturally occurring sugar in whole foods.) And I think I can adapt my “first meal” of the day more easily than Hub, because I’ll just eat leftovers from one of our dinners. Also, I don’t get bored with food to the point that I won’t EAT the leftover food. I’ll just eat it because it’s easy, but Hub will turn his nose up at it if he’s “bored”.

We’ve already started a menu for the first week, at least for dinner and for Hub’s lunches. I’ll probably eat more salad than I have in recent months, because I’ll put leftover proteins on a salad and eat it that way with homemade oil and balsamic dressing, or homemade mayonnaise (or I’ve found “compliant” avocado mayo).

The Whole30 says no snacking because if you’re hungry in between meals then you’re not eating the right amount of proteins and fats with your meals. Lots of people in videos basically said they snacked on veggies or protein snacks when they thought they were hangry in between meals. Again, the idea of the Whole30 is supposed to be “resetting” your mindset when it comes to what you’re eating and why you’re eating it. Some people do the Whole30 because they have a kind of addiction to food, or an unhealthy relationship with food (hello! right here!), while others use it to figure out what might be bothering them physically or emotionally.

T told me she had tons more energy, stopped using antacids, her fibro pain was reduced, and her post-shingles pain was reduced. A lot of people I’ve seen on youtube or read on blogs have had similar responses, with reduced pain, reduced inflammation, and better gastro symptoms, better sleep, better energy while on the Whole30.

It’s going to take a lot of planning and forethought for us, which is difficult because a lot of evenings we’re kind of like scrambling for dinner…and we never have lunches or breakfasts pre-planned. We’ve never planned out meals for the week on a Sunday, or cooked lots of meals in advance… We’ll see how it goes. We’ve been talking a lot about it for the last two weeks (we wanted to wait until after the wedding to start, because eating out is nearly impossible to do on the Whole30 plan), and hope that we’re doing enough planning to make it through the month. I really want to try because if there’s some kind of foods that are bothering me and causing me this hideous fatigue, I want to know. If it isn’t rooted in food, then I can move on from that.

I do see an allergist in the middle of August, so I hope to eliminate that possibility as well. The neuro test isn’t until the first week of September, so that’s kind of a long wait for me, which sucks. Until then I have to just keep pressing on, and rest when I can’t do anything else. *sigh*

 

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I look normal

Yeah, I look normal. Fat, but normal. Short, but normal. Brown-haired, brown-eyed, but normal. Rosacea-faced, but normal.

I’m not “normal”. I have invisible illnesses. I have issues that most people wouldn’t understand. I have to do things and live in ways that most people can’t understand.

I loathe being judged for how I manage my life. It’s rude, it’s insensitive, it’s unkind. If you don’t know what someone is going through, consider giving them the benefit of the doubt. Consider that someone outside your tiny world is living their life the way they have to for their own reasons.

Once again, our air conditioning is not working right. We have an upstairs system and a downstairs system. It almost seems like our upstairs system is FINALLY working properly after years of instability due to refrigerant leaks that no one could find the source of. But now, our downstairs system is acting up. It’s been tripping our circuit breaker randomly. Seems to be at the end of long, hot days, so we assumed it was being overworked. Then it started happening more often recently. This morning, it was tripped when I went downstairs first thing this morning. So I went to the electrical panel and reset the breaker, assuming it must have tripped last night because of the humid weather. Before I could leave the room where the panel is, I heard the circuit breaker trip again, almost immediately. I went back to reset it, but again it tripped right away.

We’ve already had an electrician out to check the breaker, which is fine. Last week, we had an a/c guy out to check the system because of the repeated tripping of the breaker. He found nothing, but suggested that based on the symptoms, it was likely our compressor was going bad. It’s not even six years old. But he wasn’t confident that was the problem, so he left with the suggestion that we consider a maintenance contract, but because we’d already established a potential problem, the contract wouldn’t cover that. So WTF was the reason to get the contract? Now, today, the breaker wouldn’t stay on, it kept tripping, which meant a call to another a/c company to see what THEY had to say. Which also meant in today’s hot and humid weather, we had no a/c on our main floor.

I have incredible heat intolerance, and my body does not regulate heat/cooling very well. That means if I go outside and it’s hot and humid, when I come inside it takes me hours to cool off, even when our house is well-climatized. In addition to the heat intolerance and regulation issues, I also now have hot flashes to deal with. If you have hot flashes, you know that for some reason your body does not dissipate that heat very well. It’s like you are being boiled like a lobster without any relief. I wear sleeveless shirts every day, all year round. I overheat so easily, it’s ridiculous. And once I overheat, it can linger. I keep ice packs in the freezer to help me when I get desperate for relief. Also, parts of me get cold from being in the cold (fingers, toes, arms), while the rest of me is hot. WTF.

The a/c guy who came today did all his tests, got the system running, but couldn’t find the actual problem. Could be X or Y or Z. Potentially Z could be the compressor, which turns out to be almost $1300 to replace, not including parts as those are under warranty. The a/c guy, as he was taking my money for the visit, asked what we normally keeping the house temperature at. I told him 65 degrees (although upstairs it’s lower) and he looked like he wanted to pass out or throw up. He told me that’s probably why the compressor is giving out so soon. He told me, “you’re killing your compressor. you really need to have the house set at 70 degrees. a normal setting would be 72 degrees.”

When the house goes up ONE degree, I can tell. When it’s 2 degrees over what I’m accustomed to, I get hot. I know when the a/c has tripped the circuit almost right away. This person, who has no idea about my life, my pain, my heat intolerance…he has no right to judge how I keep my house. Of the things that I have to live with, this one I at least have some ways to help myself. I keep my house like a refrigerator because I have to. I don’t have a choice. I didn’t choose to be this way. I didn’t ask to have these issues. I am living the way I am because I have no other way to live.

I can’t even tell you how difficult it is to be this way and have to be somewhere other than home. Heat can trigger a hot flash, which exacerbates the problem. Even at my dad’s house–where he keeps his a/c at 72 degrees–I am incredibly uncomfortable. In restaurants, I am always hot, which really ruins what could be a good meal and a relaxing evening. Go to someone else’s house? The doctor’s office? A store? A movie? A concert? The library? The hair salon? Even in a cotton tank top, I overheat. It SUCKS.

I’m still feeling crappy. Almost all my joints hurt. All my muscles feel weak. I’m really tired. Next week, I have an appointment to see a neurologist because my primary has no clue what to say to me. She went through the suggestion of virus, sinus infection, allergies. She told me to move around more, to drink more, to rest more. I have trouble getting up on my feet, standing on my feet, walking, sleeping, sitting, bending, moving…I’m going to have to explain all that to the neurologist who knows nothing about me. I’m hoping for compassion and understanding and open-mindedness. I expect none of it based on previous experience with doctors.

People who look at me don’t see my pain. They don’t know from looking at me that I have a shoulder impingement so I can’t lift my arm, or pick things up, or weed my garden. That random movements of my arm sends shooting sciatica-type pain down my arm. Sometimes petting the dogs hurts. I can’t put my clasp bra on normally anymore. Pull-over bras are almost as difficult to get over my head. Pulling shirts over my head hurts. Opening doors with that arm hurts. Reaching for soap with that arm hurts. They don’t know from looking at me how much harder it is getting every day for me to wash my hair. I can’t shave my armpits because I can’t lift the bad arm and I can’t reach the other pit with the bad arm. They don’t know that standing on my feet hurts my ankles and my knees, or that bending over hurts my shoulders and my neck. They don’t know that sometimes (but not every time) turning my head can instigate imbalance. They don’t know that when I stand up (or sit down even) it feels like the muscles in my legs might not support me, and/or that I feel like I’ve run a hundred miles (but really I can’t even walk a mile). They don’t know that I can’t pick things up because my arms feel weak, and I often worry I’ll drop whatever I’m attempting to pick up. They don’t know that I worry that I can’t take care of myself during the day, let alone take care of my dogs, because of these things they can’t see.

I look normal, but realistically I am anything but. You can’t see it, but it’s true. It’s anything but easy, but this is the only life I have. I already know that I have to spend more, do more, prepare more, worry more because of how I am…you poking at me for having to do those things is cruel. You judging me for how I have to live my life is shitty. Don’t do it.

(obv this isn’t aimed at my readers, so take no offense, I just needed to rant)

 

 

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Fake (my) news

Do you listen to yourself talk? Do you have an internal editor who sifts through what you say before you say it? Do you tell people the truth when they ask you questions?

I don’t remember when this happened, but one day I remember listening to myself talk as if I were watching the conversation from outside of it. Not in a derealization kind of way, just in a way of WTF am I doing? Someone had asked me something and I was answering them, and the words coming out of my mouth were–technically speaking–lies. I wasn’t lying with malice, I was lying because I didn’t want the person to know how shitty I was feeling. I was lying because I didn’t want to have to deal with the eventual questions of why and have you seen a doctor and have you tried x. I was lying because I didn’t want the person to pity me, or to worry about me, or to think less of me for my health issues.

I’m in pain almost every day, from various parts of my body. Possibly from my mind, who knows. I feel lousy the majority of the days in recent years…not pain specifically, but sometimes it’s anxiety, sometimes it’s due to a known illness, sometimes it’s what my mind conjures, and sometimes it’s some unknown ailment. I get tired of telling people how I’m feeling when they ask. And for the most part, it’s not about them, it’s about me. I don’t want to deal with whatever the blow-back is, as I said above.

And on this particular day, I came to a realization of how often I lie (without malice) to people. Clearly I do it without forethought or planning…and in some cases it seems to be an automatic response. I try not to do it with Hub (he can often see through me anyway) and I definitely try not to do it with my therapist. Sometimes I will edit the “truth”, even though I suspect both of them know it. But with everyone else? I lie. I give fake answers. I edit the things I’m saying to meet the person I’m conversing with.

I hate how are you? I despise how are you feeling? I always feel put on the spot to answer in a manner that the person asking can understand or respond to in a manner that works for them. I absolutely abhor when Hub asks me what hurts or does something hurt? Again, no one else’s issue other than mine, but this is the truth.

I don’t remember a time when my body didn’t harbor pain. I don’t remember a time when my body didn’t report some form of illness–real or anxiety-induced. I don’t remember a time when I didn’t lie to people about those things.

How are you? Shitty.

How are you feeling? Shitty.

What hurts? Everything.

Giving those answers…what does it do for me or for the person asking? Nothing. It puts me on the spot to explain, clarify, defend, respond…and I don’t want to anymore. I would very much wish that I wouldn’t need to anymore, but in lieu of that, I lie.

How are you? Fine, thanks.

How are you feeling? Good days and bad days.

What hurts? Nothing new or different.

If you can’t beat ’em, fake ’em?

 

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Viral return (not)

Friday of Father’s day weekend, I was back in bed shortly after lunch. It was reminiscent of that time period starting in February and lasting through to May, when I was then diagnosed with a sinus infection. At the time I was diagnosed with the sinus infection, I began to wonder if the “down” period I’d been having–which was being blamed on a virus by my doctor, and grief by my therapist (and me)–was actually the result of the sinus infection. Shortly after the anti-biotics started kicking in, the fatigue started going away. I was not splayed out on the couch all the hours I was “awake”, and I wasn’t falling asleep in my food. So I came to the conclusion that it was the sinus infection knocking me out, and I went about my life.

But the 16th, it hit me just after lunch and I ended up going back to bed shortly after eating some soup. I had plans to go out with my brother and his new girlfriend (our first meeting with her) Saturday night, but the way I’d been feeling on Friday, I wasn’t sure I could make it. I spent most of Saturday in bed again, feeling exhausted but not sleeping. It was so frustrating. I was nauseated almost all the time, felt off-balance, weak, and just plain worn-out. I hauled myself out of bed to go out to dinner with Hub and my brother and his girlfriend, but basically felt like crap all evening. Sunday was Father’s day and we were supposed to go over to my father’s for a cookout. I stayed in bed most of the day with the hope that I would have enough energy to make it through the evening at Dad’s. I didn’t do much of anything once we were there, I ate very little (which was how I’d been eating since I started feeling shitty, because the nausea is so bad that everything looks and smells gross…), and we stayed only long enough to eat, chat a bit, and that was it.

Monday morning I made an appointment to see the doctor again, but instead of staying in bed, I tried to go back to my normal routine. All the times I’d been in bed, I wasn’t sleeping…I was just lying there thinking of how tired I was. It felt stupid, so I decided to just stay awake in my recliner and try to act as normal as possible. As the day went by, I decided that I needed to get back to my cardiologist. The extreme fatigue and nausea and weakness was enough to spur me to make an appointment with him, even though I doubted it was a heart issue. I didn’t want to wonder, and it’d been a year since I’d last seen him. I decided that there was no reason for me NOT to go see the cardio, so I made the appointment.

As it turned out, I had both appointments on the same day, one in the morning and one in the afternoon. I saw the cardio first, and even though there was a scheduling snaffu, they saw me anyway. The doctor did his regular exam, talked to me for a bit, reviewed my tests from my primary earlier in the year, and did an EKG. He said he saw nothing to suggest there was a heart issue, that my test and exam were both normal. But, he said, since I’d had the stress test last year, he suggested I go ahead and get an echo-cardiogram to round out the cardiac testing. So they set me up with an appointment for this week (tomorrow) at their other office, which had an opening sooner than the local office.

I went in to see my primary that afternoon. We talked about how I was feeling, then she did HER exam. She asked if I was getting the same *smell* as when the sinus infection was diagnosed last time and I said no. I don’t think I am, though sometimes I get the phantom idea of the smell… But since it’s not consistent like it was last time, I think I’m imagining it as the memory of what it was. Without any other options, my primary suggested it might be allergies. Her thought was to try allergy medications to see if it made me feel better, and then to consider seeing an allergist. Last time when she didn’t know what was going on, it was as virus. This time, allergies.

So I said THANKS, gathered myself and left the offices. I did make an appointment with an allergist recommended by my cousin, who is a pediatric allergist and whose husband is allergic to everything and loves his allergist. Sadly, they can’t see me until mid-August. So I have to decide what to do between now and then.

Although I am still tired, it’s not as all-consuming as it was that Fri-Sat-Sun, and I’m using a homeopathic nasal spray (with capsacin and eucalyptis) to try to keep my nasal passages open and draining. So if there is a potential for a sinus infection brewing, I’m at least keeping the sinuses draining instead of stagnant. It’s an interesting spray, with not as much burn as I’d expected. It does seem to keep my sinuses open, so that’s good.

Prior to all of this, I also saw my orthopedic doctor about my left shoulder. I can’t raise my arm above shoulder height, and moving it in certain directions is incredibly painful. He took an xray, did a physical, and pronounced me with an impingement. I gotta get in to see the physical therapist to start working on it. He said if PT doesn’t work, it’ll be a steroid shot. Ech. I haven’t made an appointment yet because I’ve been run-down with everything else.

July is going to be mobbed. I have my 2 year cancer check, which will include a CT scan after my visit with the gyn onc. I also have a trigger point appointment, I need to get my hair “fixed” for my cousin’s wedding, and…well, I’m going to see a psychic-medium about my Mom. And then my cousin’s wedding. Plus we need to find a dog-sitter for when we’re at the wedding. I’m not sure when I’m going to fit in PT. Ugh. Of course this arm-thing has been going on for several months, so it’s not like I don’t know how to deal with it…

Did I mention the wedding at the end of the month is a FORMAL wedding? At a local Four Seasons fancy-shmancy hotel. I had to find a formal gown (A GOWN), I had to find shoes (I hate shoes), and just tonight we went out so I could get the dress altered because it’s too long and I hate the sleeves. But I liked the rest of the dress and it was on sale so I bought it and just told the seamstress to hack off the sleeves.

AND I’ve been helping my father clean some stuff out of his house for donation. Which means I was also cleaning some stuff out of MY house for donation. Hub and I stopped tonight and dropped off a ton of sheets and blankets (and 2 twenty pound boxes of dog treats) at our local animal control/shelter.

I need a nap.

 

 

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Purpose and control

I was watching television and a character said he became a doctor because it was always his way to try to control things. Being a doctor made him feel he was in control of his life and his patients’ lives.

I was sitting there watching and it was like one of those AHA! moments. I started wondering if my fiction writing (which I’d been doing since I was a pre-teen) was my way of controlling things in my life. Or finding a way to have control in a world where I really had no control, especially when I first became sick…which is when I started intensely on my writing career and when I was first published.

When I talked about this with T, it also made sense as to why I haven’t been able to write very much in the last few years. I’ve worked so hard to release my idea of controlling everything, and so my default way of writing–and seeing my writing–is no longer the same. T said she could see exactly what I was dealing with, and she felt the discovery was a very interesting and insightful one. I’m not sure how I will be able to write again, but T thinks I’ll find a way. I certainly don’t want to go backward in order to find my ability to write again, but as I am now, I feel like my solace in writing is gone. I used to be able to disappear into my books and create lives and worlds where everything was the way I wanted it to be. But now, where I see that control really is an illusion–even though I’m still working on that in my own life–I’m not sure how to create stories the way I used to.

At the moment, I even feel like I’m struggling to get my ideas across in this post. I feel jumbled and like the words I want are not here. It’s sad and disappointing right now. The thing that I always went to feels like it’s well and truly gone. I mean, I know I haven’t worked on any of my books in recent years, nor have I really started anything new of note, but I guess I thought it would still be there to save me.

It sounds dramatic, but really my writing did save me when I got sick. There were days I never made it out of bed except to go to the bathroom, and yet those were the days where I wrote my books. Those were the most productive days of my writing career. Through pain and vertigo and fatigue…I wrote my books. I wrote deep into the night, hours and hours at a time, and slept through until noon. I would eat lunch and then go back to my writing. It kept me sane, it gave me a life to live when I couldn’t live my own life. My hands would cramp, my arms would ache (I wrote my books in longhand), my neck would hurt…but I kept writing. That was the first time I ever wrote a full-length book, and it was the first time I persisted in finding a publisher for that book.

And here I am, in need of that solace, and unable to find it.

I’m not the same person I was, no question about it. I just don’t know how to be the person I am and still have the purpose I had then.

 

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What am I going to do

I’m still feeling lousy. There are days when I barely have the energy to do anything, including feed myself. I force myself to get up, do things, take care of the dogs and myself. In between, I rest. I get outside with the dogs for a 10-20 minute stroll every day around the yard as the weather allows so I am at least moving somewhat. I’ve read a couple of books and I’m trying to do some crocheting in small doses.

But I feel lousy. My imbalance, the nausea, heartburn, fatigue, pain…it’s all still here. Sleeplessness, heat intolerance…I’m hot and cold all the time. Sometimes I feel sweaty when there’s no sweat. Sometimes my hands and feet are sweaty and clammy. Today I have tingling in my fingers and face. And always the pain in various parts of my body. Both shoulders are bad, and for one of them I can’t lift my arm up above shoulder height. I’m eating small amounts of food and feeling full, then feeling hungry again later. Rinse and repeat when I eat again…small amounts of food and feeling full, then hungry again.

Our health insurance doesn’t kick in again until May 1st. Even so, the last time(s) I saw my doctor, she found nothing troubling. It could still be grief. I’m sad a lot, but I’m also exhausted a lot. Sometimes I’m not sure if I’m sad or tired. This stuff has all been going on since the beginning of February. It doesn’t seem as if it’s going away…it’s coming up on three months. I can’t imagine it’s just going to disappear anytime soon.

As if I didn’t have enough to think about, the biggest issue looming is that Hub is flying to California soon for his sister’s wedding. He’s going to be gone for five days. And I’m going to be alone, having to take care of myself and the dogs 24/7 for those days. I’m going to be in this big stupid house all by myself, day and night, for five days. I’m going to have to be up early to feed the dogs, and then I’m going to have to be up and alert late to make sure they get out at night before bed. And then I’m going to be alone overnight in the darkness. I haven’t been alone like this since before I first got sick over 17 years ago. The last time Hub traveled–maybe eight years ago–I stayed with my parents with the dog we had at that time so they could help me.

But it’s different now. My mother is gone, and she’s the one who kept everything in line in their house. My heat intolerance is bad and Dad still keeps their house too hot for me, so I’ll feel horrible all day and not sleep at night. Butthead is difficult to keep track of, and I can’t trust my father or my brother to make sure she’s not eating things in the yard late at night or early in the morning.  The friends I have who are local have their own lives, work, families, pets, I can’t ask them to come help me. I considered hiring someone, but having a stranger in the house while I’m here alone is frightening to me. I’ve considered staying up all night and sleeping all day, but the dogs go out multiple times during the day so I’d have to be awake and dressed to do that repeatedly during daylight hours. That means no sleep at night and basically no sleep during the day. I could try to sleep at night but being alone in the house overnight is scary for me and I’m not sure I’ll sleep. Not sleeping will, of course, make everything worse.

This all makes me feel like an invalid. But I’m honestly afraid to be alone 24/7 for five days. I don’t know how I’ll deal with pain and anxiety and exhaustion without any support or reprieve from taking care of the dogs and myself. There are moments when I think I will be able to handle it, and then there are moments when I am positive I won’t be able to handle it. The truth will probably live somewhere in between, in the end. I have avoided thinking about this since February, when Hub bought his tickets, but it’s coming too soon for me to keep pushing it aside.

 

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