5 Quick Self Care Tips

Bad day? Here are 5 things you can do RIGHT NOW to feel better:

1. EAT, SLEEP, HYDRATE! Okay, that’s three things. I cheated. But, trust me, if you’re hungry, tired, or dehydrated- you can feel better instantly by taking care of it NOW!
2. MUSIC! Listen to something that soothes you. It could be Enya or your fave death metal. It doesn’t matter what you choose, so long as it speaks to your inner calm.
3. BREATH! Try the 4-7-8 breathing exercise, or any deep breathing strategy to relax your body and engage  the parasympathetic nervous system. It slows the heart rate and calms the body.
4. CREATE! Art can take our brains to another place. It can help us focus when we listen, and help us express feelings in a safe way. It can also help us relax. Try painting, colouring, or using whatever you have on hand to get creative. anything crafty will do. Sew, knit, sculpt, glue something! It doesn’t have to be pretty to make you feel better.
5. CHANGE YOUR ENVIRONMENT! If you’re at work, try taking a quick break. If you’re at home, change rooms. Wherever you are, if you are upset, in pain, or anxious… it can help your mind and body switch gears if you change locations. Work within your limits. If a walk is too challenging, sit on the porch. If you can’t take a break at work, try a quick stretch. Adjust the temperature, change the channel, cuddle something soft. Think of the following words when you’re making a change: stimulate, distract, control.

Crying

Crying is the body’s way to relieve stress during times of anxiety. When I go through periods when I feel like I have to cry all of the time it means that I’m experiencing a lot of pain, and then stress and anxiety resulting from that pain.

The past several days have been very difficult. I don’t want to describe it as depression because it feels different than that. “Despair” is far more appropriate. I have had to cancel plans, beg off of events, and miss out on important milestones in my son’s life over the past two years because of my neurological condition, and in the past four days I’ve missed out on all of those things. It’s like an amplified level of guilt and distress over the burden that I am on my family.

Today, my husband went into our bedroom to take a nap and I was concerned that he was upset with me over all of the crying and general level of neediness I’ve exhibited all weekend. He simply asked if he could take some time to rest without having to pet or coddle me. This made me feel infinitely worse.

No, I’m not a burden, and no, my husband isn’t exasperated by my current emotional state. Yes, I’m in a bad place. Yes, it is fueled by worry that I won’t be able to do very much, if anything at all, for Thanksgiving for my family. Yes, my emotional… aura… or atmosphere… or whatever… negatively influences my husband’s mood and exhausts him emotionally. Yes, we as a family are still learning to take care of one another.

I let him sleep. I cried more. I clung to an ice pack for a while.

We ate dinner.

I’ll cry more and eventually sleep and hopefully this feeling will go away tomorrow.

Crying is the body’s way to relieve stress during times of anxiety.  It is better to let the body cry than to try to hold it in.

It’s only been three days. Perhaps, I’m not really letting go yet.

Depressive Valley

This evening I said I was done.

My son is a teenager and therefore hates the world, being at home, and his jerk parents who make him do homework.

My husband is incredibly stressed and going through an emotional recovery and is depressed but doesn’t believe in talking about his feelings, so I don’t know how to communicate with him about my feelings on the same issues.

I threw up my hands in frustration, stormed into my bedroom, and slammed the door. Our bedroom door, which I have already broken. I’m at a 9 today. I’ve little tolerance for people who can’t communicate or listen or do anything on my terms at the moment.

My husband chased me down and said something that put blame on me in some way and I collapsed inward and all of the suicidal thoughts that have been swirling around came swooping in as if they had been waiting for their chance. It was literally as if I’d been an injured animal and suddenly my legs had given out.

I work very hard to keep those moments contained to my lonely hours at night when the family is sleeping and I can use music and silly television and other distractions to calm myself down. My husband doesn’t understand how I go from sobbing to entirely calm. Hyper-rationality, that’s what I call it. It’s the calm, chemically-induced quasi-sanity that makes me think that killing myself is a perfectly reasonable thing to do.

He suggested I call my therapist.

And say what? Honestly, I’m so used to battling the chemical reaction that happens when I get like this on my own that it felt intrusive to have him present. The thought of having a nice chat on the phone felt like it would make me worse.

I’m fine now. Well, I’m not fine. I know I’m not fine. I’m in such great pain and so very worried about money. But I am not a danger to myself.

I just need to win the lottery so we don’t have financial stress. Simple.

When You Have a Bad Day

Be like the mighty octopus, and blend in with your surroundings… which may or may not be the bed.

Personally, I’ve been hiding under the covers or in my Girl Cave. It’s been a really high pain day and a really depressing day.

I see my art therapist tomorrow. I haven’t had to call a crisis line, but I’ve felt the urge. It has been a week riddled with suicidal thoughts. Letting the pain get to me more than I should due to external stressors.

Hello, Sweetie…

I am having a week where I would very much like to be taken away by a man in a mysterious blue box. Last week I had Botox done again (we keep trying and it keeps not doing anything) coming off one of the worst head months I’ve had since my stay at the Jefferson Headache Clinic. This week I have the Botox sneezes and coughs in addition to the tiny hat o’nails.

Thanksgiving is upon us. It is my first major family holiday without my mother. I really don’t know how it will affect me. I’ve managed not to think about it successfully enough and will continue to do so until my body overrides that impulse. My father-in-law is coming down to spend the day with us, weather permitting, about which I am very pleased. The last few years he and my mother have spent Thanksgiving serving dinner at a shelter together. I think the change of pace will do him well.

Personally, stickler for family traditions that I am, if there is a person who is an integral part of a family tradition and it just hurts to much to do the tradition without them, I think it is acceptable to switch things up a bit. Sometimes it is okay to let old traditions transform into something else so that you have time to heal.

I’ve been trying to get out there and meet new people and to be social. Obviously it’s entirely difficult to do so given my neurological condition, but I have had to fight for a little people contact. Not surprisingly,  I am still not good with people and I find their bullshit utterly exhausting. No, really… utterly exhausting. From their mannerisms to their speech patterns to the way they hold their forks… they are simply unbearable. I am now taking a break from people again I tried. I failed.

Words of encouragement would not be appropriate at this time because my inabilities to deal with people on a shallow social level are a long-term, known issue that will never go away. I am capable of having intense friendships and meaningful relationships, I just suck at the newness. And, frankly, purely neurotypical people annoy me… and people who are anywhere on the spectrum have their downsides as well. There are awesome individuals in this world, but sadly, I only have access to a few at a time. When I do it is amazing.

I shared those last two paragraphs with my husband, thinking them funny, and his response was to say, “Hm.”

Recently he indicated that I might be jaded. While I don’t feel I lack enthusiasm about all things I do have to admit that I am less than excited about meeting people and trying to be friends with them. Most of the time I can tell how it will play out in the first ten minutes. This isn’t to say that I don’t let it play out in the hopes that I am absolutely incorrect. But this is to say that I let it play out and then my hopes are always dashed because my gut, as they say, usually knows what’s up.

I don’t know what I’m rambling about. I’m waiting for Thanksgiving to come so I can cook ALL THE FOOD and then after eat ALL THE LEFTOVERS. And then you know what happens on Friday? CHRISTMAS DECORATING! YAAAY!

See? I get excited about shit. 🙂

Death, Preparation, and Feeling Empty

We bury my mother on Saturday. I haven’t been sleeping, and I’ve all of this stuff to do. Flowers, food, cleaning, music, worrying over people who will come and go.

My husband who lost both of his parents suddenly within a span of 18 months, says that the hardest part is that you suffer this loss and it stops time in your world… but everyone and everything else keeps going. My mother died in July and I chose to delay the burial and Compline service until after Labor day because of my health. At this point I’m concerned about whether or not people will come to honor my mother, and whether or not I’ll be able to hold it together.

I grew up worrying about what everyone thinks. There is something fundamental that I don’t understand about people and that I’ve never grasped in all my years. My default assumption is that I am somehow inconveniencing people or in the wrong. It’s so desperately important to me that the flowers be right and the food be right and that the little church ladies who might  show up for the Compline at my house walk away saying, “Oh, wasn’t that lovely.”

All of this work I’m pushing myself to do now in between migraine spikes and nausea will be over on Saturday and the people will be gone and everyone will be done with it and my mother will still be dead.

I don’t feel anything other than sadness. I don’t want to be touched. I don’t want to talk or look at people. I know my family senses it and it makes them uneasy. I am so drawn into myself that it’s a struggle to act like a person in my own home.

I know this will pass, and I know my mother wouldn’t want me to go through this. She died peacefully and she’d want me to know that and find comfort in that.

Nope, Still Bitchy

This is a pretty bitchy blog entry. I just paid a huge stack of medical bills, made payment arrangements for what I couldn’t pay, and checked on bills which didn’t have insurance applied but should have had insurance applied.On the agenda for the weekend:- Today, I will be torturing the child by making him clean in preparation for his birthday party tomorrow
– Tomorrow, there will be a surplus of moody 12 and 13 year old children in my home playing video games and eating food and then some are sleeping over
– Sunday, I will be recovering from all of the noiseThis last batch of infusions reduced my pain a bit, but today I’m super dizzy and nauseous. I have more infusions again starting on the 6th, right after another Botox treatment.

The lovely Dr. H. said, “We are limited by having to be reasonable.”

“We are limited by having to be reasonable.”

That is both beautiful and tragic. I have a feeling the woman would love to just load me up with a ton of chemicals and see what happens. She feels so bad for me.

The Jefferson Clinic called. My appointment is on July 17th. I have to have a psych evaluation there in addition to meeting with the neurologist. I think my appointment is at 11:45. I don’t recall. It’s a Wednesday, I believe. I could look at a calendar. They are sending me a packet. They said the appointment will last four hours.

Golly I hope that I am “healed” well before July. I lose my job on August 6th if I am not better. I have made it half way through the bajillion pages of my long term disability application. Luckily my short term disability supplier will send their records to my long term supplier so I don’t have to go through the nightmare of trying to obtain records from my doctors again.

It’s been a rough road.

I think the worst part is that my head still hurts, and every time I get a treatment I feel like a failure if it doesn’t work. I feel like I have personally let my family down, along with everyone else. People care and ask how I am, and I immediately feel awful for not being able to tell them that I am, ” just dandy, thanks!”

I don’t feel comfortable unloading on any one person, but then I’ve never been good at talking about feelings in any rational or coherent way.

It hurts when people ask me how I am, and then seem put off by the fact that I’m not better yet. They don’t do it in any obvious way, but the conversation becomes stilted. I can converse about any number of topics. I avoid talking about my condition with friends unless they specifically ask or have been involved in this whole process in some way. So it really stinks when friends who used to text me all the time or work with me send me a message and the conversation goes like this:

FRIEND: Hey! Haven’t heard from you in a while. How are you doing? All better now?
ME: Hi there! Nah, same as I have been. But I’m hanging in there! It’s so nice to hear from you. How is that thing you were doing with that thing?
FRIEND: Oh, I thought you’d be all fixed now. Sorry you’re going through this.
ME: It’s fine. Sometimes things happen to people. Anyway, what about that thing? I’m excited to hear all about your trip to that place!
FRIEND: It must be really awful to be in all that pain. I can’t imagine. I’d be so depressed.
ME: Life is what you make of it, you know? How was your trip?
FRIEND: Well let me know if you need anything. Keep me updated on everything.
ME: No problem. So how are YOU?
FRIEND: I’m good. Really busy though. Catch up with you some other time?
ME: Sure. Take care.

Here’s the problem I have with conversations like that: obviously I’m trying to be upbeat and minimize my broken head. I am not defined by my broken head. I am not my broken head. My broken head is something that is happening to me that is awful, but it’s not my fault and I can’t make it just go away. I deal with it every day. It’s just what my life is like right now. I’m not happy about it but I had to make up my mind that crying about it every day wasn’t going to cure me any faster. So let me be positive and tell me about the good things happening with you! Please?

I am not my broken head.

Keep you updated? Okay, I will add that to my to do list. You just told me you are too busy to have a pleasant conversation with me about YOU, and yet you want me to remind myself to tell you all the bad shit that is happening with me? You just brushed me off because you aren’t comfortable talking to a sick person. That JUST happened, and you want me to update you? Really? No. No. If you want to know how I am, pick up the phone, buddy. You aren’t my immediate family or taking me to treatments or caring for my kid on the weekends or holding my hand in any way through this process, so I am not going to give you the bullet points unless you ask.

Here’s the T and nothing but the T so help me whomever- I’m miserable and worried sick and losing my mind being at home all the time without being able to do anything. I am overjoyed to receive texts, phone calls, e-mails, anything… because I don’t see people on a regular basis. When I do see people I’m so drugged out of my mind on painkillers just to be able to deal with normal things like the grocery store or, heaven forbid, a restaurant, that I don’t know what I’m saying. It literally hurts to be touched, in bright light, or in any kind of loud place. I can’t drive at night. I have to wear these huge goofy sunglasses everywhere. It is horrible. All of it. I miss people and my job.

But that doesn’t mean I want to talk about it all of the goddamned time. Does it occur to these people that maybe I need distractions? My sanity is supported by nothing but distractions. Writing? Distraction. Ukulele? Distraction. Podcasts? Distraction. Documenting my insane medical whatever? Distraction. Listening to television shows and sneaking peeks at them when the sound just doesn’t tell me what’s going on? Distraction.

Blah. I don’t even know what I’m talking about anymore. I have to find something to eat that I don’t mind possibly throwing up in half an hour and then try to rest a bit before I start ordering the boychild about.

Gouge Me With a Spoon

Day 2 of DHE infusion… I have to drive myself to the hospital this morning. This should be amusing. First I have to figure out bathing with this stupid IV. Of course it’s in my right arm and I’m right handed. It messes up my entire routine and I’m very, very stressed out. I think I would rather just get stuck again tomorrow than have to keep this thing in my arm another day.

First they give me Benadryl and Reglan, then I wait for 20 minutes and they give me the DHE. Then I wait an hour. If my head pain is gone I go home. If it is not, as was the case yesterday, I get another dose of the DHE. but not nearly close enough to the Reglan (an anti-nausea medication) to prevent me from suffering a huge wave of topsy-turvy nausea.

At least MCV has valet parking.

I see the lovely Dr. H. tomorrow before my last treatment this week. I’m still waiting to hear from the Jefferson Headache Center in Philadelphia.

I’m into my sixth month of feeling like someone is trying to dig out my left eyeball with a spoon. It’s really becoming difficult to fake being upbeat for my family.

I’ll write a more positive, less bitchy blog later. I’m just running on little sleep and a lot of pain and I’m cranky to the gills.

“Headset” +2 Obnoxious Condescension, -7 Intelligence

I hate that being angry makes me cry and that I am too nice to take my frustrations out on customer service representatives.

However, I like that customer service reps feel sorry for me… because they think I’m worried when I’m really just ready to eviscerate them.

More Like Health “Don’t Care”

Here’s a little update about how a screwed up health care system that sets things right, can still screw you over.

Last Friday when I discovered I won my Short Term Disability appeal, I immediately called my benefits line to find out when my health insurance would be back to normal. I was informed at that time that it could be as early as Monday and as late as three weeks hence.

Obviously I called back on Monday and the benefits line told me that everything was back to normal.

Great! That meant I could have my spinal tap today (Thursday) as planned and have my specialist’s office schedule my infusions.

But… no. First my doctor’s office called to inform me that they were getting the runaround from my health insurance company and were unable to schedule my infusions. I immediately contacted the hospital to discuss rescheduling my spinal tap/lumbar puncture… whatever the kids are calling it these days.

THEN the hospital called me back and told me that they were able to get approval from my health insurance company and were fine proceeding with the procedure (see what I did there?) on Thursday (today.) I had little faith, so I asked the woman if she could please and thanks check with her manager about that.

It turns out that my benefits line at work told the hospital to keep my spinal tap on the books, but that my health insurance company was still showing my benefits as inactive because I had not paid the now $5000.00 insurance bill.

Lordy day.

I rescheduled my tap for the 28th.

I called my benefits line and asked how on Earth they could tell me everything was a-okay when it wasn’t. They said someone had made a mistake and that they still showed my benefits set to the VERY expensive COBRA benefits.

So I, in all of my exasperated fake patience explained once more that: 1. I won my appeal on Friday and that my benefits were supposed to be switched back to normal work health benefits including my life insurance, vision, and dental. 2. That I had sent in a check for the amount I owed for my work benefits(about $1300.00) and was refusing to pay the $5000.00 because I was not confident that I would be reimbursed in a timely fashion. And 3. I was severely disappointed in the customer service I was receiving.

The poor girl who was bearing the brunt of all of my extremely polite rage explained that they won’t get the switchover information until Monday next, and that I would have to call back then. She also told me that it could be many more weeks to alert my health insurance company past that. But she told me they could do an emergency switch over if I needed preapproval for surgery.

I said I didn’t need approval for surgery but it was a medical procedure performed in a hospital, and that all of this red tape was literally prolonging the pain that I am in and my ability to return to work.

She told me, and I told her I was holding her to it, that if I said I needed preapproval they would fix my benefits by next Wednesday.

Now there’s a likely story.

Meanwhile, I talked to payroll at my insurance company and they have processed my check for the months of benefits they didn’t pay me when they should have to cover the fact that I was out of work due to a disability. The nice payroll lady informed me that it was a hefty check and that because I had won my appeal they would be sending it next day air on Tuesday so I should have it Wednesday.

Now there’s a more likely story.

The ENTIRE time I’ve been out of work I have dealt with people who have promised me they have done what they are supposed to do, and then I have had to clean up a ton of very stressful and nasty messes along the way. All the while I have been held responsible for the actions of others and have had to explain it to my boss on a daily then weekly basis.

I miss the days when I thought that doctors know and care about what they are doing, and that insurance companies treated the people who paid them like customers. How naive was I?

It’s Beginning to Look a Lot Like NIGHTMARES

So…

My son’s Christmas concert is tonight and I’m very excited to see him play (stand-up bass) but I’m utterly dreading the whole ordeal. The idea of getting dressed and sitting through two and a half hours of middle schoolers playing and singing loudly and slightly off key just horrifies me. I’m trying to time out my pain and anti-nausea medications carefully today. I just hate that everything we do centers around my stupid head.

And…

I feel officially alone with all of it. I think my husband’s overwhelmed. I think he is so wrought with worry and despair that he just can’t deal with any of it right now. He actually let me make dinner and do dishes last night. He just sat there, despondent.I’ve put on a smile and stayed as strong as I can, but now I can’t be in the same room with him without crying. It’s bad enough that I’m in pain and EVERYTHING that could go wrong with my medical care and insurance has gone wrong, but now there aren’t those happy little family moments to help me through it.

How can I get through this without some joy? I have to stay positive, being negative doesn’t heal people… not my head, nor his worries and heavy heart.

Therefore…

I’m just doing the best I can.