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

Posts tagged ‘MS’

5 Frustrations

Today, I complain. I just have to, ok?
  1. Mother has been back and forth to a neurosurgeon in Florida. There have been lots of tests, and lots of money has been spent. This morning she got a call from the doctor who has been reviewing all of her scans from 2002. It is now known that she does NOT has MS. Well then why does she have problems with her legs? Why was she unable to walk for weeks? Why has she be paying thousands of dollars per month for Avonex? What does she ACTUALLY have? No idea. That’s what. Absolutely no idea what the hell is wrong with her. Did I mention that the local neurologist she sees is a total dumbass? Yeah. I kinda have it in for the moron.
  2. I have not yet found a job. This sucks. I need a steady income. I can survive, money-wise, but not forever. I’m really not enjoying my time at home. This is largely due to the fact that I do not have a proper workspace (where I could be getting writing done), the internet is up and down all the time (I lose replies to posts and emails a LOT), and Babe and I have to share a computer. I have a hard time with it because it always feels like what I want/need to do is less important or significant than whatever she is doing. There are a lot of things I need to do right now that probably appear to be frivolous, but are not. It’s extremely important that I build my author platform, do as much research as possible, and stay connected to the indie writing community. I don’t want to constantly ask to use the computer, but I don’t want to sit idly either. I am failing to strike the balance. And no, having a schedule does not work. Note: This is not an attack on Babe. The situation is not her fault.
  3. I’m writing children’s stories. They need illustrations. It’s a fail. I have yet to find an illustrator for this project. I need someone who will stick with it at least until the end of the year. I’m doing a series, so the illustrations have to be consistent. The characters, the scenery, the overall style… I want to bang out 6 stories/books by the end of the year. It’s not looking good. Artists in this country are some combination of flaky, unprofessional, expensive, too laid back, poor communicators, and overly opinionated. I just want someone to meet my requirements (which include professionalism and ability to meet deadlines), complete the project on time, and not kill me with the price. Apparently, this is too much to ask. I’ve started looking elsewhere. I’m hoping to find a student or recent grad who will take this on. Blaaaaah!
  4. I have not been working out. At all. It’s one of my ROW80 goals to run 4 times per week, and it is NOT happening. It sucks. Not only because I am not meeting a goal, but because it makes me feel like crap. I tend to be more lethargic and listless when I don’t get enough physical activity. I need to fix this. I did some yoga this evening. That’s a start, right?
  5. FROGS. I freaking HATE the nasty little pieces of crap. With the rain we’ve been getting recently, they are showing up more. I had three scares in 24 hours. I don’t know what to do. And no, I will not get over my irrational fear of them. They are GROSS. DISGUSTING. 
In the midst of all this, I have managed to get some writing done. Unfortunately, it is all over the place. I have six files going on my Neo2. Yep. That’s six different pieces. One is a flash fiction which I think is quite interesting. I’m excited about transferring it to the computer to edit, edit, edit. I’ll be submitting it for a competition this month. The other files are all the beginnings of short stories. I really have no idea where four of them are going. I just kind of started them all on whims. The fifth one, I have a better handle on. I can see where it’s going. Is it weird that I plan, plan, plan my novels, but I pants my short stories? Maybe. But my
process is my process, right?
How about you? How is your week going? Any frustrations? Do you see the light at the end of the tunnel?

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?