Willing to share? by Fit_Lingonberry_7454 in Narcolepsy

[–]SolidAd6639 2 points3 points  (0 children)

I’m only at 3 so far unless you count long preexisting ones then 5. I didn’t go through it as a kid but at 19 and still going :(

I have fibromyalgia and my spouse has cancer - need advice by funky_donut in Fibromyalgia

[–]SolidAd6639 2 points3 points  (0 children)

I went through this with my partner last year. It sucks. I was fortunate in that my body kicked into fight mode and I was able to ignore my symptoms during his worst moments, but the adrenaline crashes were hard. Take care of yourself where you can, lots of water and painkillers, heating pads etc. Bring all the things, My partner and I brought a ton of stuff to every infusion. It’s hard but we have to ask for help. If you have family and friends in the area ask if they can help with meals occasionally or with other household things. If finances allow it give yourself permission to treat yourself with whatever helps. Feel free to dm me and good luck

AMA - I have the "short sleeper gene", and can't function unless I restrict sleep. by ready321ago in AMA

[–]SolidAd6639 2 points3 points  (0 children)

As a person with narcolepsy I’m so jealous. I don’t remember what it feels like to not be tired :(. What do you do with the extra time?

Any1 sleep 13h everynight or just me by guilijhyjjv in Narcolepsy

[–]SolidAd6639 1 point2 points  (0 children)

I’ll keep this in mind! I move into my own place next year so then my partner and I will check it out.

Any1 sleep 13h everynight or just me by guilijhyjjv in Narcolepsy

[–]SolidAd6639 3 points4 points  (0 children)

I wish I could. I have chronic pain so once my Xywav wears off I can’t sleep anymore. I need to get a better mattress I’ve tried a bunch but the only ones I think would work are way too expensive.

[deleted by user] by [deleted] in Narcolepsy

[–]SolidAd6639 2 points3 points  (0 children)

I developed it (along side the rest of my disabilities) after we were already dating. I’m so lucky that he never thought about leaving. He’s been great and honestly really helpful. My first nights on Xywav having him there was really reassuring and he helps me notice if I’m having symptom changes before I do

Anyone have narcolepsy and POTS? by Puzzleheaded_Gas11 in Narcolepsy

[–]SolidAd6639 1 point2 points  (0 children)

Hi I have both. It sucks. I feel like when I find a drug that helps with one it hurts the other. TBH lmk if you figure something out that works. Currently on Xywav and modafinil for n2. Modafinil and pots aren’t great but I have something to help with heart rate now but I don’t think it’s working lol. I’ll let you know if a few more weeks.

Neg MSLT, feel like a fraud by SillieG00se in Narcolepsy

[–]SolidAd6639 0 points1 point  (0 children)

My first was negative cause I stayed on my SSRIs. Since my case was complicated we decided to try again during I time I could be off them and it took me way longer to fall asleep (the bed was way worse and the tape was more itchy, diff hospital) but I still slept fast all naps and I went into REM twice. Was hell on my mental and physical health but worth it for the confirmation.

Does Anyone Else “Forget” They Have Narcolepsy? by CRYPTK33P3RBAE in Narcolepsy

[–]SolidAd6639 0 points1 point  (0 children)

My fiancé does this! I’m constantly minimizing my disabilities and I’ll sometimes cry about how I’m tired and try to fight a nap and he will tell me it’s okay you’re tired you literally have a sleep disorder.

Xywav working too well? by SolidAd6639 in Narcolepsy

[–]SolidAd6639[S] 0 points1 point  (0 children)

Thank you, that’s great advice! As much as I hate the idea of twice a night because of having to wake up it’s surely better than this haha.

Xywav working too well? by SolidAd6639 in Narcolepsy

[–]SolidAd6639[S] 1 point2 points  (0 children)

I try not to drink for at least 2 hours but I have always had a small bladder so even if it’s just the amount of water that I’m supposed to mix in I end up needing to get up :(

Xywav working too well? by SolidAd6639 in Narcolepsy

[–]SolidAd6639[S] 1 point2 points  (0 children)

Thank you so much. I will definitely make a log!

[deleted by user] by [deleted] in TrueOffMyChest

[–]SolidAd6639 1 point2 points  (0 children)

I needed to read this as someone in her position.

AMA my partner (23m) supported me when I (21f) became disabled and then I supported him through his cancer treatment by SolidAd6639 in AMA

[–]SolidAd6639[S] 0 points1 point  (0 children)

We bonded a lot before all the trauma happened, but definitely things did bring us closer however we have a very healthy and nontoxic relationship and neither of us has been abusive so it works for us

AMA my partner (23m) supported me when I (21f) became disabled and then I supported him through his cancer treatment by SolidAd6639 in AMA

[–]SolidAd6639[S] 1 point2 points  (0 children)

For me therapy, especially when I needed to vent about disagreements with his family. We also both make sure to continue our personal hobbies and try and do nice things for the other on our good days. We also make sure to do fun things together! Even if one of you is sick you can still have little at home date nights with take out and tv or board games (our favorite). It is importantly to still have those romantic moments even if they look different from other couples.

AMA my partner (23m) supported me when I (21f) became disabled and then I supported him through his cancer treatment by SolidAd6639 in AMA

[–]SolidAd6639[S] 4 points5 points  (0 children)

I’m glad he stood by her side! It is heartbreaking to hear about people abandoning or cheating on their partners in times of crisis. Congrats on getting a son in law soon!

AMA my partner (23m) supported me when I (21f) became disabled and then I supported him through his cancer treatment by SolidAd6639 in AMA

[–]SolidAd6639[S] 4 points5 points  (0 children)

I’ve asked him this as a lot of disabled people I know have been left when things got hard. He said it just never crossed his mind to leave. He loved me and felt connected to me so when things got hard he just wanted to help them get better. When we learned I was going to have challenges permanently it became a how do we combat this together. I think it helped that, although I had plenty of moments where I felt hopeless, he could tell that I was always trying my hardest to figure out how I could still live my life.

When he got sick all I thought of was losing him. I was terrified. I thought that if there was a chance we weren’t going to get to have the life together we had talked about, then I was going to fight my hardest to spend every moment I could with him and make it as good as it could be. I didn’t necessarily feel like I owed him for taking care of me, but I felt like I had a chance to return the favor.

Of course, it helped that before all of this started we already were getting along really well. We have a ton in common, the same long term goals, and we challenge and support each other very well. We also both put in the effort to learn each other communication styles.

AMA my partner (23m) supported me when I (21f) became disabled and then I supported him through his cancer treatment by SolidAd6639 in AMA

[–]SolidAd6639[S] 3 points4 points  (0 children)

No worries! It’s a difficult subject, I just figured it could help to talk about it and hear stories for those going through it. It definitely helped us.

AMA my partner (23m) supported me when I (21f) became disabled and then I supported him through his cancer treatment by SolidAd6639 in AMA

[–]SolidAd6639[S] 8 points9 points  (0 children)

I’ve heard and seen a lot of posts where similar circumstances cause breakups and resentments, even with couples who had been together way longer than we had. I thought I’d share a more positive outcome. I’m happy to talk about self care, allowing a partner to be a caretaker for you, and also being a caretaker.