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[mare]

I saw your post about your update. Congrats! I'm glad that it's up and running.

As far as MS. It's a really complicated disease. I can only really explain the kind I have. There are a ton of variations and not everyone has the same symptoms which is why it's such a bitch to diagnose. I have the most progressive form of the disease (naturally lol) It's called SPMS. Basically, when it hits this stage there are no remissions, you just get progressively worse. My doctor thinks I probably have had it since I was in my early twenties based on my medical history and questionnaire I had to fill out. I was just never officially diagnosed with it. At that point it was in the relapsing/remission stage which is why it wasn't ever diagnosed. I would have symptoms for a while and then it would go away, and I'd feel better. Had I been the type to go to a doctor whenever I felt sick, I most likely would've been diagnosed much earlier and could have maybe prevented going downhill so fast, but I mean, the symptoms for me showed up as migraines, dizziness and achy legs. Things that could be explained away by other factors. By the time it was too hard to ignore, the legions were fairly visible on my brain. It is what it is. There's really not even that much that can be done about it. Most of the medicines on the market are for relapsing MS. There are more severe treatments like chemo even and infusions. The problem is most insurances don't cover a whole lot of those and unless you're rich, you can't afford them. And even those are primarily for people who still go into remission. It's weird. As far as hand controls, I don't know. The cost and relearning how to drive doesn't make much sense for someone like me, who doesn't really work and barely leaves the house. I do also hate driving. A lot. I'm a nervous driver so controlling things with my hands would be too much anxiety for me. Keeping my car is more of a mental thing.

[RokofAges75]

Thanks!  And thanks for explaining more about MS.  It does seem very complicated.  A woman my mom worked with had it, and she must have had the relapsing/remission kind or been in that stage of it because sometimes she would need a cane to walk, and other times you would never even know she had it - she seemed totally fine.  I was hoping your experience may be similar, but I'm sorry to hear that's not the case.  That is really frustrating that the heavy-duty treatments are so expensive and not covered by insurance - I hate our healthcare system.  But it doesn't sound like it would be worth it to pursue that, given the side effects and the fact that there's no guarantee of it working for you.

Same with hand controls for your car - if you don't even like driving, it doesn't seem worth the cost and effort.  I get that; I've always been a nervous driver, too.  I've gotten more confident over the years, but I still prefer to let other people drive if they offer (unless they're a terrible driver).  I can also understand wanting to keep your car anyway, though.  I would probably have a hard time giving mine up, too.

[mare]

Yeah, I think it's about independence. At least as long as I have my car, I feel like if I need to go somewhere, I can. Once that's gone, I have to rely totally on my sister or other people to get places. I hate that. It's been the worst part about this whole thing, not really having much independence anymore. I've always been used to being on my own. It's been an adjustment, even living with someone else after all those years being alone. I worked with someone at one of my schools who also had MS and her name was also MaryAnn lol she had the relapsing kind and besides every once and awhile having vision troubles, you'd never even know she had it. She never had an issue with walking ever. For her it was all in her upper body. Vision and hand tremors. So odd.

I watched a video of that couple you sent me. They are adorable and just seem so likeable. Some people just translate to video so well. I feel like I come across with strong serial killer vibes lol He was in a wheelchair so it wouldn't quite be the same thing, but it was still nice just watching a video of their experience.

[RokofAges75]

I'm sure that is so hard.  I would also struggle with losing my independence and having to live with someone else again.  I can see how that would be the worst part for you.

I love Cole and Charisma!  I discovered their channel when I was researching for my last story, but now I just watch them for fun.  I've always said they need their own show on TLC!  It would be nice to see some normal, functional couples with healthy relationships to contrast the dysfunction and toxicity of 90 Day Fiance and a lot of their other shows LOL.

[mare]

I would totally watch it if they managed to get their own show. I have never watched any of the other ones you've mentioned but yes, it would be nice to see normal people in the spotlight for a change.

I'm back for a second time today to upload my chapter onto AO3. It was funny to see how much people were freaking out about not having access to that site. I guess it makes sense if you normally read a ton of fanfiction. It was actually back by this morning by the time I was finishing up my writing, but I decided to just keep with the plan and update it when the site was supposed to come back.

[RokofAges75]

I saw everyone freaking out about AO3 being down the other day, but it was back online by the time I tried to get on, so I didn't even notice.  Glad they got it up by the time you were ready to post!

It's been a slow writing week for me so far, but I did finally get going on my April Fool's one-shot (the real version) again, so maybe I just needed to write something different.  The only problem with that is that, after like 3 years of reading and writing almost nothing but first person POV, I just caught myself randomly switching the POV from third to first mid-scene.  I wrote over 400 words in the wrong POV before I realized it!  Whoops LOL.

[Carter-Orange]

Hi Steph! Your cruise seemed nice. Lots of beautiful places. I'm secretly scared of catching a stomach bug on the cruise. My immune system isn't that great and because of the buffets etc... hopefully not though. I bet it is hard going back to work after a nice vacation like that. Are you planning on cruising again?     

Speaking of cruising

I'm still a little stressed about how I'm going to get around. I rented a scooter but I'm worried about getting into things, like the buffet and restaurants and shows with a scooter. The only other thing I have is a walker. I can't use just a cane anymore and my sister doesn't want to drag the wheelchair and I can understand that because I rented the scooter. our cabin won't be big enough to hold all my handicap equipment. I'm sure I'm not the first person who's had this problem. I'm hoping it will be easier than what I picture in my mind. I can't believe it's only two months away. I have been talking about this cruise forever! LOL

It'll be nice unplugging for at seas days. I am bringing two books with me because in my head, I can't picture what it would be like not being on my phone all day long.

I agree Steph, that Merlin ending was garbage! I'm still mad about it! It deserved so much better!

Unfortunately I did end up with the damn norovirus bug and had to have a couple of days off work.  I ended up with it 6 days after Tim.  I have a bit of a phobia about being sick, so this was awful.  There was a lot of it on our cruise and we were three hours late boarding because they were supposedly doing a deep clean to get rid of it.  Obviously they didn't clean enough, and people just weren't washing their hands enough either.

It hasn't put me off cruising again in the future, but I'd probably do adult only and a smaller ship.

You don't have to worry about getting around on a scooter on the ship.  There were loads on ours.  Ships are very accessible places in my opinion.  And the crew are very helpful too.  I bet you can't wait, not long to go now!

My advice would be to wash your hands before going into food places, don't rely on the hand gel as it doesn't kill norovirus.  Take anti-sickness medication with you just in case (I wish I had) and just enjoy your cruise.  It will be lovely

[Carter-Orange]

Welcome back, Steph!  It looks like the cruise was lovely!  I enjoyed seeing your photos on FB.  I bet it was hot, though, and that's too bad about Tim getting norovirus... no fun!!  I hope you were able to avoid catching it, and I'm glad you had a good time otherwise.  It's always so hard going back to work after a holiday!

I bet it was nice to have a break from social media.  I go through phases, but most of the time, I'm too attached to my phone and computer.  I don't usually post much, but I spend a lot of time scrolling LOL.

I haven't updated my site/story in a few weeks, partly because I've been trying to figure out this transfer thing, but I have been writing.  I've finished two chapters and am well into a third, trying to build a buffer back up so I can get back to semi-regular updates.  I am just so slow.  I can't believe it will be 25 years next year either!  Who would have ever thought?

I didn't avoid norovirus first time I've had anything like that in 22 years. 

Yes, I think we are all so attached to our phones these days.  I don't post constantly on social media, it's usually if I go somewhere, or pictures of the cat lol.  So it was nice to just be cut off from it for a couple of days.

Hope you managed to sort out your site

[Carter-Orange]

Mare, sorry to hear your type of MS is the most progressive type.  Someone in my work has it and sometimes walks with a stick but other times seems fine.  And it's shocking that treatment isn't available unless you're rich.  I'm sure it would be the same here the way our health system is going.

I hope your cruise ship is as disabled friendly as mine was.  Even the theatre had some extra wide rows for wheelchairs, scooters and walker access.  They really do include everyone.

We didn't have a drink package as neither of us are big drinkers and there's no way we were paying over £1000 for what would probably be one alcoholic drink per evening (turns out we didn't even have that lol).  There we lots of restaurants included in the cruise price, but some speciality ones which you pay a bit extra.  We did one of those.  I'd say stick to the main dining room as much as you can as the buffet can be a bit hectic at times and that's where you're more likely to pick up any germs as who knows who has touched the food and then put it back.

I need to watch the new series of The Boys, still not got around to it yet.

[mare]

I saw everyone freaking out about AO3 being down the other day, but it was back online by the time I tried to get on, so I didn't even notice.  Glad they got it up by the time you were ready to post!

It's been a slow writing week for me so far, but I did finally get going on my April Fool's one-shot (the real version) again, so maybe I just needed to write something different.  The only problem with that is that, after like 3 years of reading and writing almost nothing but first person POV, I just caught myself randomly switching the POV from third to first mid-scene.  I wrote over 400 words in the wrong POV before I realized it!  Whoops LOL.

I have done that a ton of times! It's hard when you're used to reading or writing one way and switch to another. Glad you got the motivation to continue on your other story.

I have been feeling like crap for the last couple of days and my sister just tested positive for Covid, so I'm pretty sure I've got it too. She used our last Covid test, but I'm feeling the same way I did the last time, minus the terrible cough. I'm still coughing but not nearly as bad.

[mare]

Unfortunately I did end up with the damn norovirus bug and had to have a couple of days off work.  I ended up with it 6 days after Tim.  I have a bit of a phobia about being sick, so this was awful.  There was a lot of it on our cruise and we were three hours late boarding because they were supposedly doing a deep clean to get rid of it.  Obviously they didn't clean enough, and people just weren't washing their hands enough either.

It hasn't put me off cruising again in the future, but I'd probably do adult only and a smaller ship.

You don't have to worry about getting around on a scooter on the ship.  There were loads on ours.  Ships are very accessible places in my opinion.  And the crew are very helpful too.  I bet you can't wait, not long to go now!

My advice would be to wash your hands before going into food places, don't rely on the hand gel as it doesn't kill norovirus.  Take anti-sickness medication with you just in case (I wish I had) and just enjoy your cruise.  It will be lovely

Ugh! Sorry you got sick! I am the same as you, Steph. Stomach bugs are the ONE thing I can't tolerate. Everything else, I'm okay to deal with, but when it comes to having to puke, I'm not a fan. Not sure if anyone is, but yeah...ick! Thanks for the tip about the hand washing. I'm pretty obsessive about that already. I am going to buy all the motion sickness meds just in case and thanks for easing my mind about the scooter. I am very excited!
 

[mare]

Mare, sorry to hear your type of MS is the most progressive type.  Someone in my work has it and sometimes walks with a stick but other times seems fine.  And it's shocking that treatment isn't available unless you're rich.  I'm sure it would be the same here the way our health system is going.

I hope your cruise ship is as disabled friendly as mine was.  Even the theatre had some extra wide rows for wheelchairs, scooters and walker access.  They really do include everyone.

We didn't have a drink package as neither of us are big drinkers and there's no way we were paying over £1000 for what would probably be one alcoholic drink per evening (turns out we didn't even have that lol).  There we lots of restaurants included in the cruise price, but some speciality ones which you pay a bit extra.  We did one of those.  I'd say stick to the main dining room as much as you can as the buffet can be a bit hectic at times and that's where you're more likely to pick up any germs as who knows who has touched the food and then put it back.

I need to watch the new series of The Boys, still not got around to it yet.

Aww thanks! Yes, your co-worker most likely has the relapsing kind. It's the most common. I'm hoping they'll have those extra wide seats for the theater. I know some ships make you reserve seats, but I think the theater in this one is a first come first serve situation so there's no seating chart of the actual theater. I already know I'll have a hard time squeezing through the casino because the rows are really narrow but I'm hoping if I do go in there, I'll be able to park it outside and use my walker. I'm going to send my sister to check out all the things first before I try to venture in. Yeah, the alcohol drink package isn't worth it, especially for me. I know if we didn't have to do it together, my sister would've totally gotten it because she could pack away over a drink a day, but I barely have one alcoholic drink a year, let alone night. LOL

[RokofAges75]

Oh no, Steph, I'm sorry you ended up getting sick, too!  That's the unfortunate part of cruising, the fact that germs can spread so easily when you're stuck on a ship with that many other people and eating at buffets.  Gross.  But I guess it's worth the risk!  Frequent hand-washing/sanitizing is good advice.  I would also second bringing something for seasickness.  I never got seasick on any of the three cruises I went on, but some of my friends did.  You just never know until you're there, especially if you've never cruised before, so it's better to be over-prepared and not need it than to not bring anything and regret it.  I hope Mare's ship is as accessible as yours was, too!

Mare, sorry to hear your sister has Covid!  I hope you don't have it again, too!  I remember how rough it was for you the first time around.  If you do have it, I hope it's more mild and goes away faster this time.

[Carter-Orange]

Mare, I hope you have mild covid this time and aren't unwell with it.  At least you shouldn't catch that on the ship as you should have some immunity to it for a while.

[Carter-Orange]

It was election day here yesterday, so this morning I woke up to find out we have a new prime minister and the conservative party have been more or less wiped out.  Hoping the new government will do a good job, but we'll see.  I don't suppose change will happen very quickly.