A random, eclectic mix of thoughts, feelings, observations, and experiences – LIFE

Posts tagged ‘sickness’

Five Question Friday

It’s Friiiii-daaayyy, Friiiii-daaayyy! Gotta get down on Friiiii-daaayyy! Five Question Friday, y’all. Here we go.
 
1. What is the weather like where you are and do you like it?
It’s kind of cool-ish. 73(F), and should be 64(F) tonight. I DO like it, actually. This is perfect weather, to me. I can comfortably wear jeans and a top, and a sweater. Even a scarf in the evening, if I really want to. I like warm clothing. It’s nice to wear shorts and tank tops, but that gets old. It’s easier to like nice when you wear long pants and stuff. And I sleep way better in cooler weather. No matter what the temperature is, I HAVE to be covered up to sleep. This means that heat is brutal at night. It’s just not very nice beach weather, and I really like the beach… Can’t have it all though. Oh! And I just remember something else. I LOVE soup. I feel like making soup. Making and eating soup is ridiculous in the heat. When there’s some chill to the air, though? Perfect.
2. When you’re sick what do you seek comfort from?
I ball myself. On the bed, in the couch, under Babe… Wherever. If I’m by myself, I rock while I’m balled up. The only way I won’t rock is if someone is there to comfort me with their warmth and hugginess. Blankets. Soup. TEA. Tea is a big one for me. Love tea.
3. What do you need to do before the end of the month?
I need to complete the no-longer-than-two-pages description I need to write for the program I want to run. To get a grant of $5,000-10,000. Basically, the US Embassy is giving one-time grants to organizations/community leaders/individuals for HIV/AIDS prevention/education promotion. I have some pretty great ideas, but it will be pretty hard to get support from organizations, community leaders, media, etc. The Bahamas Christian Council has a lot of influence, and seems to scare everyone else into corners. The church and government are not separate here. Not even in theory, honestly. I’m rather unorthodox in my thinking and beliefs. For example, I think the abstainence message is outdated, unrealistic, and ineffective. To go even further, I think that it hurts a lot more than it helps. It just means that young people are ill-equipped, dishonest, and afraid. They do what they want to do behind the backs of all in authority, hurting themselves in the process by not protecting themselves. All because they don’t have what they need. The complete knowledge and understanding of the epidemic, condoms, support. Ok, got a little off track there. I also need to write a short story before the end of the month. I have a million competitions that I’d like to enter.
4. Have you ever served on a jury?
No. I just registered to vote for the first time, and I think the registry of voters is what they use to draft the jury lists. If I got called, I’d answer the questions as best I can to avoid being chosen. I’d probably be a good juror because I’m so non-partisan and by-the-book, but it’s a huge waste of time. Court cases go on for far too long. And the other jurors would probably make me want to kill them. Lol.
5. If you could be any animal, what would you be and why?
Animal? Oh, dear. I really don’t like animals. At all. If I had to BE one… Gaaah! What would I choose? I have no idea. Ummm… I’d be a dolphin. They’re so cool. Mammals of the sea. And they do those cool jumps. Yeah. I’d be a dolphin.
 
Join the Five Question Friday fun! Link up.

Is This Hell?

Sad. Confused. Lost. Useless. Helpless. Tired.

This seems like a good time to warn my regular readers. This isn’t my usual Happy Monday or WHOOP-DEE-DOO! Life! stuff. I’m going through something. You may not want to read this post. It’s a bit much.

I am exhausted. These past few weeks have been torturous. I feel like this is a little bit of hell. I mean, really. If there is a hell, it doesn’t mind coming to earth. When it comes to earth, it visits people. It’s the guest that was never invited, and doesn’t ever want to leave. Apparently, it’s my turn to house it. Hell.

My mother had a multiple sclerosis crisis a few weeks ago. She was in the hospital for two weeks. She’s now staying at my grandaunt’s. I’m glad that she is now able to walk with a 4-prong cane instead of the friggin’ walker. And she’s moving much faster. She still has to pace herself. She can’t do too much. It seems that she’s getting better, and will make a full (but slow) recovery. This is fine. For now.

Mother was discharged on Monday. I believe it was Thursday that my grandmother was admitted. Seriously?! All I could think was, Seriously, can this stop now?! Apparently not. Things just keep getting worse. There was a family meeting last night. Really, it was my mother and her siblings. Plus my sisters. They weren’t invited, really. But they were there. Everyone needed to be told what was going on. I think my uncle was the only one who knew. And maybe my aunt. The other 5 brothers didn’t. Actually, one of the brothers is in New York with his daughter who just had a baby. I guess he still doesn’t know.

My uncle is the primary contact and my mother is the secondary contact (that the doctors have for my grandmother). The doctor couldn’t reach my uncle yesterday morning, so they called my mother. She called my sister to take her to the hospital. They needed her to sign the discharge form. They went on to explain things. Things my mother knew nothing about. But she pretended. She wanted to get more information, so she kept saying the “Yes, yes, okay” stuff but all she really wanted to do was scream. I talked to her this morning. She still wants to scream.

They’ve decided to keep things quiet. Everyone knows that Grammy has been having problems breathing lately. About 2 years ago, they had to get her an oxygen tank. Her shortness of breath was crazy. It’s still crazy. And not getting better. Sometimes, it seems like she has to fight to catch a breath between her words. Even talking is difficult now. There’s some type of pulmonary fibrosis and something-something else. That’s the story everyone has agreed to stick to. There will be no mass dissemination of new information. It’s scary. That word. That one word with six letters. Everyone dreads it. No one thinks it will happen to them, or anyone close to them. Least of all, their 80-something year old grandmother. The sweetest lady in the world.

Last night sucked. I find out this stuff from my mum and then I drove home. To an empty house. Babe was out, hosting a thing. I couldn’t bug her. I still wanted to speak to her. Just to say, “Hello,” and maybe possibly send some sort of wordless message that I needed her. Not that it would have done me any good. She was busy. So I sat on the couch. I stared at the wall. There was no music. She had the computer and the iPod with her. I didn’t know what to do. I got my new book. I didn’t feel like reading. I didn’t even open it. I text messaged a friend. A good one. Vanessa. I didn’t want to lay my burdens down, so I just kinda said, “Hey, whassup?” We chatted randomly. Then she asked about my mum. I told her. About my grandmother. And that I really wanted to go for a drive, but it was far too dark and sketchy. She offered to come get me, but I declined. It would have been too much. Too far for her to drive. And for what? To be stuck in a car with me? I couldn’t do that to her. Plus Babe went out with no keys. I couldn’t leave. I wanted to have a hot shower. But I couldn’t. What if she came home? I got no answers to my phone calls or text messages. I was pissed that I had no idea when she’d be back, or even if she was okay. No communication. That always pisses me off, but I was really on another level last night. The day and night just sucked. And it was no one’s fault.

I didn’t even have feelings. I was just numb. I sat there. With thought. Thoughts. Too many of them. Lungs. Liver. Spleen. Hospital. The unspeakable word. Quality of life. Future. Stupid, stupid Christmas. Eventually, I got a notepad. I scribbled some words. When I was done, I rested it down. Then, all of a sudden, I felt. And it was a lot. I cried like I don’t remember ever crying in my life. It was like I couldn’t breathe. I could get no air. It was horrible. I wondered if that’s how my grandmother feels when she talks to us. I told myself that I deserved it. To feel that way. That I was too selfish. Too mean. Too focused on ME, ME, ME. Babe was right when she said it in her own way. I was right to hate myself a little bit more than usual. I was a terrible person who was not nice. Maybe I caused this. Maybe, somehow, my overall crappiness as a person caused this. Maybe I’m the link. I’m the one bringing all these enormous heaps of awful to the people around me. It was me. And I cried. And then I saw the selfishness in that. I was pitying myself.

Babe called, finally. She said she was 10 minutes away. I took that time to go in the shower. Of course, 3 minutes later, the doorbell rang. Out of the shower and onto a towel, I shuffled across the floor to unlock the door, and then back to the shower. I finished up. I calmed myself. Straight to bed, I went.

I’m exhausted. Did I mention that? I can’t seem to catch myself. No matter how much I sleep, I’m not feeling rested. At all. This has to be more than a physical exhaustion. Mental and emotional too, I bet. There is too much happening. Too fast.

What will tomorrow bring? Hell. What will the next MINUTE bring? I have no idea. I don’t even know if I have any hope left. *puts hands in pockets, and takes them out. Empty*

No Thing is a Little Thing

My week is… Messed. It’s Thursday, and I’m still thankful, but lemme offload for a few minutes, ok?

On Tuesday, I got a phone call from my sister letting me know that Mum was being taken to the hospital. She didn’t have many details. Actually, I think she sort of trivialized it. Mum has MS and often has headaches and general bad feelings, so I figured she’d go to emergency, and be in and out. No such luck. It wasn’t until later that I got the full story. The situation is MS-induced and is known as a “crisis” where the MS is basically attacking her body. This whole MS thing is still new to all of us since she was diagnosed just last year. There are so many types and subtypes that I still don’t know which one she has. I guess it doesn’t really matter. She has mutliple sclerosis. It sucks. It’s a progressive thing. It will only get worse. We just wish it wouldn’t. There is no cure. We just wish there was.

This is not my own work.

She wasn’t feeling well on Tuesday morning, but she never feels well in the mornings. She didn’t take it to mean anything, but opted to have her friend drive her to work. She worked for 20 minutes before she had a break. On her way back to her section, walking up the stairs, her legs felt week. She said, at that point, she decided that she’d stay upstairs for the rest of her breaks because she didn’t think she could walk up the stairs again. By the time she got the top of the stairs, she knew something was wrong. She felt her body changing. She sat in the nearest chair, and had a passerby call her supervisor. When the supervisor got there, she was in tears as she told her, “I can’t walk.” Supervisor called my uncle to pick her up because Mum refused an ambulance. They brought a wheelchair which she had to be lifted into.

Up to yesterday, she had no use of her legs or feet. A therapist came and tried to get her to move her feet. One of the instructions was to “Move your foot like you’re tip-toeing.” If you weren’t watching extremely closely, you would not have seen any movement at all. I’ve been telling people her movements of her feet was at about 10%. That’s a lie. 10% is putting it nicely. Anyway, today, the therapist got her to walk. From one end of the bed to the next (not length-ways). By the time she got to the other end, they had to stop. It was far too painful. Since then, they’ve given her pain medication in who-knows-what-amounts. She has been sleeping pretty much all day. In her waking moments, she has not been coherent. I’ve been translating and making decisions for her all day.

That’s enough of that talk. Yesterday was Mum’s birthday. I wasn’t here, but I heard her tell a million people that all of the nurses and PCTs on this floor came in with a lit cupcake and sang Happy Birthday to her. Isn’t that nice?! I know it made her feel good, despite the circumstances. She still hasn’t eaten it. It’s on the nightstand because she likes looking at it. In the evening, my sisters came with a big birthday cake and flowers. She’s said she wanted Edy’s vanilla ice cream, so I message my dad, and he brought it. Leave it to us to have a mini birthday party in the hospital. We put candles in the cake, lit them, and sang Happy Birthday (complete with 3 rounds of “For she’s a jolly good fellow” and 1 hip-hip-hooraaayyy!). (There was actually a big party with catered food, tents, chairs, etc. scheduled for last night. It was a double party for Mum and her twin brother. We postponed it after Tuesday’s events. I hope it still happens, whenever the hell she gets out of this place. 

If nothing else, this whole thing has made me think about the “little things” that really are pretty major things. We just think they’re little because we haven’t had to do without them. Today, I’m thankful for the less acknowledged blessings like the ability to:

  • Walk
  • Pick things up
  • Hold things
  • Feed myself
  • Speak
  • Understand
  • Stand up
  • Sit down
  • Go to the bathroom
  • Drive

It would be wrong for me not to note that the people I work with/for are GREAT. I called Co-founder 1 on Tuesday to ask if I could leave early, and he sent me off and told me to take as much time as I need. The next day, I was dressed and ready to go to work when Co-founder 2 BBMed and told me to go to the hospital and be with my mother. Today, same story. Isn’t that fantastic?! I haven’t had to be worried about skipping lunch to leave work an hour early to see my mother, or sit at work all day, wondering how she’s doing. They are really fantastic people, and I’m really blessed or lucky or whatever you want to call it. I’m thankful for that.

Whatever you believe in and whatever you do (for good), please do it. Hope, pray, think positively, make wishes on stars, rub your lucky charm, speak to the universe… Whatever. Mum needs to be able to stand on her own. And walk. And have full use of her hands. And it would be nice if she could be pain free.

Join the Thankful Thursday blog hop.

What “little things” have you never really thought about before, but can’t imagine not being able to do?

Paying to Survive (Day 6 of 30 Days of Truth)

Day 6 – Something you hope you never have to do.

I never want to have to deal with another serious/chronic/autoimmune/terminal illness. Not in a family member, not in a friend, not in myself. It is so draining, in every way.

One thing I don’t understand is the cost of medication. And treatment, for that matter. It makes no sense. How could it cost so much money for a person to preserve life?! Governments intervene to regulate the prices of bread basket items, seemingly because we need them to live. What about medicine? What about treatments like chemotherapy? What about rehabilitation? How does it cost thousands and thousands of dollar to preserve life? To treat illnesses, to ease symptoms, to slow the decline… Why?

I’d rather not have to deal with illness in anyone close to me. It’s a difficult, trying time. Coming to terms with the diagnosis, learning about the condition, reviewing treatment options, finding the money, fighting insurance companies, getting emotional support, preventing relapses, raising awareness. There’s so much involved in it. At the end of the day, we do what we must. We do the best we can with what we have. We try to get what we don’t have, but realize we need. It feels like a never-ending game of tug-of-war. But we do it. When we have to. Because we have to. I don’t want to have to. But I will. If I do. But I hope I don’t. Ever again.