It's Not You, It's Me

No. Those two little letters are so difficult for many people to say - I've been hearing this more and more from my friends with chronic health issues. My mom doesn't have chronic health issues, and I've even been hearing it from her. I'm not sure if I'm just paying attention to people saying they can't (or feel obligated to not) say "no" or if people are feeling more obligated.

I don't want to focus on why people feel obligated to say "no", especially as there can be a litany of reasons. Instead, I want to focus on being able to say no, and my feelings surrounding it.

I've spent the past year, trying to say "no" when I either can't or do not want to do something - it was actually one of my New Year's Resolutions! In the past, I've pushed myself beyond my limits because (in most cases) I felt like if I said no, it showed weakness or that I was obligated to do whatever it was.

Here's an example: a friend of mine wanted some help and wanted me to come to her house. Unfortunately, this past week was not the best for me. I was rather busy with work, and on top of that had picked up some extra hours to help out a colleague whose wife is ill and I also had a deadline for my other job. I was frazzled. My partner also picked up extra hours at work. Plus, I'm getting over a flare. My friend asked me to come over and help her, and I offered up the day that I had most available. Unfortunately, that didn't work for her. I'll be honest, she guilt tripped me. I was crying out of sheer frustration and stress while texting her back, trying to explain that the single day my partner had off the whole week (for what it's worth, he typically works 3 days, as they're 12-13 hour shifts so working 6 days is a lot more than usual!) was the day before my deadline. She actually asked if I could come over that day!

Sorry... but not sorry. I need time for self care and also time for my partner... if I have any extra time. I used to push myself to my limits, and when I did that, I often ended up more sick. I do feel for my friend, I genuinely do. However, I can not help her if it will end with me missing a deadline, or ending up sick or bedridden in pain for a few days. If this had been an emergent issue for her, I would have considered it. I don't want anyone reading to think I'm a lousy friend. However, I also get a little annoyed when I feel that my friends aren't being considerate of me.

So sometimes I need to "just say no". And a firm "no" at that. I don't do a lot of "maybe's" any more. I try to be upfront with my friends. I knew after working several days in a row, plus being on a deadline would mean that I would need time for myself. (and self care is so incredibly vital, especially for me!) I've practiced saying no on my own. When someone asks me to do something, I now try to think about if I really want to do it, and if I do it, how will it impact me - if I help my mom paint her house, will that leave me possibly missing work? Then I try to consider if there are other options. For example, if I can't help my mom paint, is there anything else I can do that would help her without stressing myself (perhaps by helping to prep, gathering supplies, or evening bringing her lunch).

My internal struggle is that I care for my friends. I want to help people. However, I have had to learn to care for myself. Now, when I turn a friend down, I try to explain - it's partially for me and partially for them. I want them to understand why I'm saying no, that it has less to do with them and more to do with me (so I guess it really is true, "It's not you, it's me"). I try to talk with them about what other options there are. Most of my friends are amazing, and are very willing to adapt when I'm not feeling well. The first few times I gave someone a negative when they had a request, I was meek. I was so worried - would they be mad? Would they be put in a bad place? Overall, most people were like, "Oh, okay, no problem! I'm sorry you're not feeling well" (and in some cases, I was feeling okay but just did not want to push my luck). And remember, practice does make perfect - try saying "no" when you're just sitting there on your own. Roll those letters around on your tongue and try them out for size. And if they aren't the right size, carry on.

Chronic Health Helpers

I'm always on the look out for things that will make my life easier, so I figured I would share my current favorites. Some of what helps me can be beneficial even if you don't have chronic health issues.

1) Be organized. Interpret this as you will. For me, this means carrying a little card that lists all of my medications and dosages in my wallet, and I recently copied it on to my phone (you would not believe how many offices just take the card). If you have a lot of medications, it is significantly easier to carry a small card than all of your medications. Plus, you would not believe how many medical professionals (mostly nurses) actually thank me for carrying this (my husband is a nurse, and he says it is completely usual for a patient to say, "Oh, I take that small blue pill. I think it's for my legs.. or headaches..."). I also keep all of my doctor appointments (and work schedule, husband's work schedule, birthdays, etc) in a planner. It may be overkill that in my house we keep a planner in our kitchen with all of that stuff in it. It's centrally located, and carries everything in it. I typically tape my doctor appointment business cards into the planner.

2) Have a pill case. It took a while for me to find a pill case that I liked. I only have two compartments a day, but the days split apart (fantastic for trips, or just an overnight). I use Apex's pill case, and my husband has the smaller version for his vitamins and one medication.I bought mine at drugstore.com, but have seen them at drugstores near me. This helps me not double dose, as well as having my meds at hand ahead of time is so helpful - think of a day when you're exhausted. Now you don't have to open all of your pill cases, because it's right there.

3) Take time for yourself. You need to relax a bit each day. It doesn't need to be several hours, but do something for yourself. I'm a fan of books, so I love to take some time at the end of the day to read and indulge that habit. I'm also a fan of baths, so I have a collection of bath bombs and the like - I love grabbing a cup of hot tea, a book or trashy magazine, and soaking for a bit. Sometimes I skip the reading material and just let my mind go.

4) It's okay to ask for help. I'll admit that I'm terrible at this, but getting better. I hate bugging people, and I often try to pretend like I'm physically okay. I've learned who I can rely on, and for what - so for example, I have a friend who is not great for talking on the phone but will hop over to my place on short notice. She's great for just having someone to talk to at home over a cup of tea or if I need a ride somewhere. 

5) Don't try to be Superman/Superwoman. Related to the previous "helper" - don't feel like you have to do it all or have everything be perfect. I spent so much time either trying to do it all and then ending up sick or feeling awful because I couldn't do everything I wanted. I have settled (and I don't think of settling as always a bad thing). Sometimes I need to prioritize both what I want to do and what needs done - and then think about my limits. This means that sometimes I don't vacuum my living room as much as I'd like, but if vacuuming meant I'd end up incredibly sore and out of "spoons", then so be it. (related: if you aren't familiar with the "Spoon Theory" by Christine Miserandino, definitely check it out). Find out your limits, and do not push yourself if you don't have to. Sometimes for me this means I have to change plans (often last minute), for example instead of going for a walk or shopping, I may do better just getting food or sitting around my living room chatting. Luckily, I have some really great friends and family who get this, which leads to...

6) Surround yourself with positive, supportive people. Shouldn't this be a given for everyone out there? I don't mean only be friends with peppy, upbeat people (well, do that if you want) - but surround yourself with people who support you. Obviously, some people are closer and more supportive than others, but that's okay. I have some family members who I do not consider myself close to because I just feel terrible after I spend time with them - why should I go out of my way to spend time with people like that? Honestly, I was afraid for a long time that my friends would not be there for me if I needed them, but it turns out that I have some amazing, wonderful friends (if you're reading: you're also all very intelligent, attractive, and funny).

7) Find out what there is out there that can help you adapt. For me, this means that we have a plastic can opener under one of our cabinets because I have a difficult time opening many containers. I also am a huge fan of GPS apps (I love Waze!) - I have brain fog often, so sometimes I just get a little forgetful and driving directions are incredibly helpful. I also utilize Post-It Notes (probably way too many).

8) Have a good medical team. I love (most of) my doctors. You need to have doctors that you can trust that you feel that they take your health seriously. If you have more than one doctor, you need doctors that communicate with each other. My lupus support group suggests keeping all of your health care in one health system, but I disagree. My doctors are not all in one health system because quite frankly, I have two doctors that I would not trade for the world and they are in different health systems - I'm not trading either of them, and the do communicate quite well. 

When I had lousy health care and couldn't (or not without lots of money) see my rheumatologist for several months, I called him. I was literally in my car on a lunch break crying and he called in medication because the other health system had me on a wait list (of several months). I had the "new" doctor telling me that I didn't take my health seriously (are you kidding me??!??!) and my lupus was flaring... and they'd see me in a few months. I called my old doctor (crying) with my lab results, and gave them verbally. The person I spoke to on the phone chatted with me, calmed me down, and assured me she would get the info to him and if I needed to be seen, they would work with me. When I left work, the woman I spoke to had left me a very kind message, telling me what to do and that medicine was called in to my pharmacy. I cried on my ride home - not because I was scared and overwhelmed but out of a sense of relief. 

Also know that you CAN fire doctors and medical professionals (to a limit). I was once in the hospital and did not like my nurse - now, please know I am married to a nurse, so I know what they deal with and I do try really hard to be a decent patient and understanding (okay, I'll be honest, I do not have much patience when I'm hurting). So I'm in the hospital, and this nurse is treating me lousy. She wasn't abusing me, but she was rude and she forgot one of my medications and said she gave it to me (but she did not). I also think it is ridiculous to be ready for pain medication, ask for it, and wait over an hour. I get that they're busy, but that sucked. Couldn't another nurse have brought me my medication? Well, only if the nurse had told them I needed it (no one knew). Turns out, this particular nurse had several complaints on her record. I politely asked for the charge nurse and requested a new nurse. Most hospitals also have an advocate, who I also spoke to. You don't have to do all that, but just know if you don't jive with someone, you can ask for another person. Think of it this way. If you went out to eat and ordered some ravioli. You're excited, you're a huge carb freak and love cheese, and are excited that they said they'd put vodka sauce on it. You're practically drooling because this is just what your stomach is craving. Then they put down fettuccine alfredo. Not the same. You can send it back and ask for what you originally wanted, or not say anything and quietly eat the food. It might still be good or it may be rubbery gross pasta so you don't even eat a few bites. 

Do you have any other "helpers"? Maybe I'll add some more later, but these are the things that have been the most helpful for me.

Keeping it together when I am

A couple of months ago I was at an event for work. I had been excited about it for months, but also extremely stressed and had debated many times just not going. My business partner was shocked - why would I not want to be at this event that would be furthering myself, furthering my business, fun, and a great opportunity to connect? When someone I really don't want to see will be there. Maybe I'm just a wimp.

You see, I left a graduate program. I don't want to get into details but I do not regret my choice one bit (this often shocks people in my field). I made the absolute best choice for myself in that situation. Would I choose that same choice if outside factors were different? I have no idea. But I am comfortable with my choice. For several months before I left, my adviser was difficult to be around. My adviser was the opposite of supportive and helpful, even when things were smooth sailing. The first time I got accepted to present at a conference, instead of cheering me on or even wanting to chat (I would have loved to have someone guide me), my adviser said, "Oh. Well, I guess that's okay. That's a very small conference, and not very good. You better not screw up." Um, thanks?

I have chronic health issues before I ever applied for that program. This same woman mocked my health in front of my classmates. This is just the tip of the iceberg. It got a lot worse. I was crying at home most evenings.

So guess who I knew would be at that event? Her. I was so afraid of even seeing her that I almost didn't go. That's ridiculous! Luckily I got a grip on reality and realized it was a disservice to myself to avoid a wonderful occasion because someone who should not matter to me would be there. I would bet $20 right now that this woman did not even care (if she noticed) that I would be there. I psyched myself up, and had several friends who were so supportive (and I'm forever thankful to you people - I had the best text messages those few days). So I walk in the first day in an outfit that made me feel good. One of the first people I saw was a good friend of mine - off to a good start! I tried to not cling to the people I knew (I mean, come on, what was the worst this woman could do to me? A dirty look? Psh. Whatever).

And I didn't see her the first day! I wondered if maybe she didn't go. I was having a blast, and let my guard down. I actually let my guard down after about an hour because it was stopping me from fully enjoying myself. So I stopped caring. That's when I saw her - the second day at breakfast. I was seated at a table with new friends, and she walked past. Looking back, I'm glad that she didn't just make eye contact and move on. She stopped by, and we briefly chatted. I refused to look nervous (at least on the surface). You know what she did? She put down the event in front of a table full of people! I had to stop myself from laughing. I kept the conversation short, and basically signaled that I wanted to get back to the (amazing) people I'd been chatting with. I wished her well, and meant it.

I moved on. A few hours later I realized I wasn't anxious or upset. I was... calm? I was also proud of myself for not wimping out or running away. I faced it head on and lived to tell the tale

Improved communication, thanks to a subscription box

Sorry for neglecting my new blog! But now I'm back.

I recently subscribed to the Fantasy Box (review coming) but wanted to mention possibly the best part for my partner and I, and it isn't what I expected. In the first box (and possibly others, I'm not sure) there was a short questionnaire for each person to fill out. It was slightly racy (it is an "adult" box after all), but not so racy that I would have felt uncomfortable talking about it. I would have been fine discussing our answers out at a dinner, depending on the restaurant, but I'm also a health and sexuality educator by trade so I tend to forget that not everyone talks about sex every evening (most of the time I'm not talking about my sex life, mind you). There were definitely some questions and answers that I could see making people blush.

A lot of the questions my partner and I agreed on, and I think if we had to, we could have predicted each other's answers. However, that said, there were a few that were a surprise! Some of the questions included when you most prefer to have sex, what you would love to see your partner in, if you are more of a leader or a follower, and where you would most like to have sex (answers included the back of a taxi, a friend's bathroom at a holiday party, or your living room with the windows open knowing your neighbors could see you).

Instead of just going through and discussing our answers, we took some time out to talk about the answers. After dinner, we sat together in the living room - no tv and no phones! We each had a drink and some candles lit - just to start to get the feeling of romance started (without laying on rose petals on the bed or anything). I totally expected the questionnaires to be the most boring part of the box, and didn't expect to get anything from it! I was pleasantly surprised, and think that they were interesting and fun. I would love to see questionnaires in the future. I know that while I'm pretty open and comfortable talking about sex, my partner is still getting used to that. And I totally get that! Not everyone is comfortable, even with their partner(s), sitting there chatting about a sex act they want to do, their favorite underwear on their partner, or sex in public (for the record, not really for us - have you seen the back of some taxis? Some are really clean, but it's still not for me. Plus taxis aren't as common where we live as other modes of public transit).

I've used checklists and questionnaires for teaching before - more as handing them out and encouraging students to use them for themselves (to discover things they may or may not like) and in a relationship. I'm definitely planning to unearth some that I've used for teaching and even if we don't go through them, at least using them to help communicate.