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

Posts tagged ‘illness’

Six Things Saturday

  1. I’m sick. I don’t know exactly what’s going on, but something is wrong. I haven’t been able to eat a meal since Wednesday afternoon. On Friday, I packed myself a lunch. At lunch time, I heated it up and had ONE spoonful. That was all I could take. A few minutes later, I forced two more. That was it.
  2. Today, my little cousin went back to his mother. His dad asked me to accompany him on the plane ride. It was nice to be able to take him, and chat with him. He had a little moment of crying, saying that he wanted to stay with his dad, but it didn’t last long.
  3. My aunt is like a doctor without the degree. She knows all kinds of home remedies and can diagnose things like nobody’s business. Yesterday, she looked in my eyes (the pink part you see when you put your finger right under an eye and pull down). She can see iron levels by the colour. Usually, she just tells me, “Yeah, your iron is low.” That time, she said, “You’re anemic!” I said, “That’s news?” Hahaha. I am feeling a bit lightheaded these days though. It sucks being alone when you feel like crap, doesn’t it? My cousin checks on me every now and then though, so it’s okay.
  4. Babe is still away. She’ll finally be back on Monday. YAY!
  5. Some weird things are going on in our apartment. We’re finding out just how much the owner sucks. She doesn’t respond well to the issues we bring to her attention, and it’s really getting old. Time to move on, I think.
  6. It’s super hot. I think that may be contributing to how I’m feeling. Weak, tired, and no appetite. I’m trying to drink lots of water. I got two bottles of Gatorade from my aunt’s house last night. I’m drinking a mouthful every now and then, just to get something in my system. I do NOT want to end up laying up in a hospital on a drip like last time. I can usually tell when I’m heading down that road, and it’s not good!

Oh, how about a bonus thing? I decided on the writing competitions I’ll enter for the rest of the year. Now I just have to get cracking with the writing and editing of my work. I thought I’d get lots done this week, but health issues deterred me. Bummer! Hope to make up for it after a nap today, and tomorrow while at FamJam. Hopefully my appetite makes an appearance tomorrow. If not, my family will notice, and will probably take me straight to the hospital. Gross!

What are you up to this weekend?

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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*

King of Sorrow

Sade’s King of Sorrow is playing in my head. You know what that means, right? I’m having a moment.

I hate this. I can’t tell you how much it sucks. I’m sitting in the hospital. My mother has been here since Tuesday. She still can’t walk. The therapist came this morning. She was having some trouble. My sister and I got kicked out of the room. Sister left, but I waited outside the room door. It was probably half an hour later when I was let back in. I asked the therapist how it went. Not very well. She made some steps, but was very painful. She felt stiffness. Not good. The therapist told me to encourage her to move her legs. I friggin’ HATE MS. Did I tell you that? And this ish is progressive. Just gets worse. How there is no cure for these abominable conditions, I don’t know. Well, I DO know, but that’s another thing. Entirely.

She’s still in huge amounts of pain. Even with all the medication being pumped into her. She’s also having random crying spells. She was eating boiled fish (like a clear fish soup Bahamian’s like – I hate it), and said it was cold. I got the nurse to heat it up. When she came back with it, my mother said, “That’s the food you just heated up?” The nurse said, “Yes.” There was a brief silence, and the nurse said, “You forgot?” That was it. She started crying. The nurse said to me, “Sometimes it can be overwhelming,” as she gave her tissue. As she left, she said, “You take care of your mumma. She’s a special lady.”

*sighs*

This sucks, guys. It’s ridiculous to see a person – your mother – laying up in a hospital bed (or sitting in a hospital recliner like she is today), unable to walk without a walker, and the assistance of other people… Particularly when you’re used to the person being self-sufficient.

Seriously, she’s delirious a lot of the time. Incoherent. She doesn’t understand some things. Some things she says, I have trouble hearing and/or understanding. She forgets things. My grandaunt was here earlier. I met her here. (We’d arranged for her to come early today, so that I could sleep a little, and then come an hour later.) She was probably here for about 2 hours. About an hour after she left, my mother asked me, “What Gloria say?” I sort of looked at her quizzically, and asked, “What? What do you mean?” She said, “What did Gloria say? When she was here…” I was confused. I just told her that she didn’t say anything. She was just here, and she took her clothes to wash. Sister was still here at that point. She kind of laughed and said something like, “[Name she calls mother], she was just here. You forget already?”

I don’t think it’s funny. None of it is funny. It annoys me when people laugh. It annoys me when people talk about her when she’s right there, whether they think she’s out of it or not. It annoys me when people say things like, “She look bad, hey?” Like, seriously, people. Get a grip. Shut your friggin’ mouth. If you’re not here to help and/or support in some way, just leave. This isn’t Entertainment Central. She is an actual PERSON. Her hearing is FINE. She doesn’t need to hear you saying that she looks bad, or isn’t doing well, or make her feel stupid, or laugh at her condition.

I get that people deal with things in different ways. Still, I know that there are definite WRONG ways. And they annoy me. It is really disturbing that people can be so insensitive. Unfeeling. Stupid. Barbaric. I don’t feel like dealing with all of that ON TOP of this situation. I think this is all of the SUCK that I can take right now.

And HOLY HANNA, I am TRYING to be a big, brave girl. Seriously. I’m not showing my fear or sadness. I just come here, sit down, and maintain a noral facial expression. I fight tears all day long. I avoid saying negative things. I try to think positively. More than anything, I try not to cry. I try especially hard not to let anyone see me cry. Well. Last night, I broke down. I had my Wendy’s dinner, and after a few spoonfuls of my chocolate frosty, I just cried. I sat at the table with my hand covering my face, and let the tears roll. It was hard to let myself just cry. Babe was there, and I’m sure it was awkward. I didn’t look at her at all. And I didn’t really want her to look at me. I felt like an idiot, sitting there, crying over my frosty. She let me have a moment, and then she came and hugged/held me. She let me cry, and told me that it was okay. She said she knew that I was being strong and brave for my mother, and I was doing well. She also said that I don’t have to do that when I get home. Isn’t that nice?

 It’s weird that it’s not just sadness. It’s actually GRIEF. Something has been lost. Is gone. Is no more. There’s no certainty that it will return. I look at her now, and I don’t see my Mummy. I see a shell. Her body is there, but her face is not the same. It’s some other face. I don’t really recognize it. It’s covered by sadness. And confusion. It changed so quickly. Will that happen again? Will her face go back to normal? Will her brain be the same? Will her memory be restored? Will she be able to walk again? Will she ever be happy again?

Questions, questions, questions. I don’t see any answers. Therapists, nurses, the doctor… None of them have answers. Just hopes. And vague it-will-take-time statements. Like, thanks a lot, dude. That helps. *flips the bird* (Honestly, I don’t flip birds. I have never flipped any birds in my life.)

I’m the only person here. I keep wondering where the hell everyone else is. I guess they have important things to do. Maybe some of them would rather not see her like this. I don’t know. The bottom line is that I’m here by myself. Well, with her. And I feel alone. Can you imagine how she feels?

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?

It’s Thankful Thursday!

Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so, let us all be thankful.                  -Buddhist Quote

Honestly, I’m not feeling particularly thankful. I’m actually in a not-so-great mood. It’s not fun. You know… When your mood sucks. I’d rather be happy. I knooow, [mocking tone] haaappiness is a decisionnn. It’s just a decision I don’t feel like making right now. I’m gonna play King of Sorrow by Sade, allow myself to have a moment, and THEN, if I FEEL like it, I’ll decide to be happy. And thankful. Wait right here while I go do that, k?

[King of Sorrow plays as I sing some parts, and just cry during others. Then a few minutes of silence as I get myself together. Wash my face. Drink some water. Clean my glasses. Put them on for the first time today. Look back at the task at hand. Take deeeep breath. Sip more water. Choose to be happy. Think of all the things I should be thankful for, even if I’m not in this moment. Until I AM.]

Okay. I’m ready. It’s another Thankful Thursday, so you know a list is coming, right? Here are things I’m thankful for today:

  1. Life. My life, although I haven’t managed to like every single minute of it, is not too shabby. I breathe without labour. I have food to eat when I’m hungry. I have clean water to drink, cook, and shower. I have family and friends, and they’re real.
  2. Healthcare. My grandmother is in the hospital. For the first time in her life (aside from giving birth to her children). Two days ago, she felt very ill. Heart racing, feeling weak, etc. Yesterday morning was worse. The decision was made to call the ambulance. Her blood sugar level was almost 5x what it should have been. I visited her last night. She looked good. She was calm, relaxed, and well-taken care of by the hospital staff, and her children.
  3. Lunch. Babe made spaghetti last night. I wasn’t hungry by the time I got home, so I didn’t eat. Still, Babe made enough meat sauce for me to have some for lunch today. I just made some noodles this morning, and BAM! Lunch. (I love bringing lunch from home, and very much dislike buying lunch. Especially since the places around here are: hot dog vendors, the worst Chinese food ever, and a sandwich/pasta deli with super salty food.)
  4. Internet. Keeps me entertained at work, connects me with friends AND new people, keeps me in touch with Babe while we’re apart, loads of information at my fingertips… It’s just great.
  5. Grams’ humor. My grandmother is super funny. And good-natured. And positive. It cracks me up a lot. Here’s a bit of the exchange I had with her:
Me: Hi, Grammyyy!
Gram: Oh, look who it is! How you doooing?
Me: Nooo, how are YOU doing?
Gram: Me? I’m in TOP SHAPE! [This is her standard answer to the above question, no matter what!]
Me: Top. Shape? Then what are you doing in here?
Gram: Good question. What I doing in here, hey? This ain’ no way to spend a vacation now, is it?
Me: *laughs* No, not at all. *looks around room* You don’t even have an ocean view in this room.
Gram: Yes, I do! Look! *points at picture of a beach scene on wall*
Me: Oh! You do! I see.
Gram: *laughs*
———————–
Gram: Yes, everyone (minus Chris) was here today. All of them (my 8 children minus Chris) were standing up out there, working on getting me this room. The hospital was full.
Me: Oh, yeah, I heard there were no beds. That’s good you got one. And they were here to make sure you got sorted out.
Gram: Yes. The only one I didn’t see today is Chris. It’s his birthday. We were supposed to be having a party tonight.
Me: Party?
Gram: Yes, for his birthday.
Me: Oh, well I guess we’ll have to party later. When we get you outta here.
Gram: Yes, we’ll probably do it for Stevie’s (grandson) birthday. His is on [insert day here].
———————–
The woman was in the hospital, making me laugh, and talking about eating crab cakes, mangoes, and having birthday parties with cake. What a woman!
I have to say that I feel much better than I’d decided to feel a few minutes ago. Thinking of the things I’m thankful for and remembering the exchange with Gram… It really put things into perspective. And reminds me that I’m control of my happiness. Sure, there are sucky moments, and there may be times when it’s harder to pick myself up and be great… Sometimes, I may need a nudge from a friend, a lunch packed by my Babe, a nice email/text message, a surprise phone call from a far-away friend, a cupcake, or a can of COOOLLLD Coca-Cola… But at the end of the day, I can WANT to be happy, and MAKE. IT. HAPPEN. For knowledge of this, I am thankful.
HAPPY THANKFUL THURSDAY!
What are you thankful for today?

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.