Well, we’re off to another school year with a bang! Colby transitioned into kindergarten like the pro that he is, Sophie is doing great being the “big kid” at daycare without her big brother around, I have been making it through my workday in an *almost* fully upright position and have started my last year of graduate school, and Paul continues to be super-dad-super-husband helping me in every way that he can. Really, I can’t complain! I was so nervous about all of these transitions, these times can be challenging for any family, let alone a family that has a mommy who is chronically ill.
As you saw in my previous posts my summer was wonderful. I felt good, I felt rested, and I felt more in control of my life. It was a pretty big blow to my living on cloud 9 when the school year started up again. I can no longer sleep when I need to, take breaks when I need to, or just put my feet up when I need to. When you’re a teacher, your world revolves around your students who need you to be your best…all the time. It’s a massive amount of pressure for a person who sometimes struggles to stand. (literally…people with POTS use three times the energy of a healthy person just by standing up…fun…) Now, do I put a lot of this pressure on myself, maybe unjustly? YES! It’s my type A, go-getter, fake it till you make it personality. But, none the less, it’s a challenge…and I continue to work on that.
Perhaps the biggest challenge right now is how alone I can feel. I can be surrounded by my closest family and friends and still feel like I’m on an island all by myself. It’s a strange feeling that I really haven’t encountered before. I read in another potsie blog that the longer she was ill the more she started to feel completely disconnected from others, and I guess that’s what’s going on with me? Maybe? I feel so annoyed with my body and my situation that at times it’s very isolating. Because this illness isn’t something that a lot of people have, or that a lot of people understand, I just feel like no one else in my life can actually relate to my world. I also feel like people must be thinking “okay, we get it, you’re sick, get over it already!” although no one has ever said that to me. I know that if I feel exhausted and annoyed with my body, other people must too! Who could blame them!? 🙂 So, I tend to turn inward and keep more to myself…this is a slippery slope I’m on…and I know it! I want so much to reach out to other people sometimes…but it’s just hard. So, here I sit…sometimes very lonely.
So…what can people do to help their friends and family who are dealing with a chronic illness?? I’m so glad you asked 😉 Here are some things that have helped me to feel less alone and a little more supported!
- Make them laugh. A lot and as often as you can!
- Check in with them…not about their illness…just with how they are doing!
- Text them “I love you” or “I’m here if you need anything”
- Cook them a meal so they don’t have to…because they will not ask you to do this!
- Mow their lawn, shovel their driveway, weed their flowers etc…help them out because they will NEVER ask!
- Hug them…a lot…even if they don’t want a hug 🙂 (I’m not a HUGE hugger…but this one really does help!)
- Take their kiddos out for an afternoon so they can nap…because they will NEVER ask!
- Love them unconditionally…and make sure they know that
- Text them a favorite memory to make them smile…”remember when we…..that was so fun”
- …chocolate…always chocolate! 😉
- “you look great!” even if their eyes are tired and their hair is a mess…
- and my all time favorite…”wow, have you lost weight?!” even if you know damn well they haven’t!
And for the other POTS patients reading this, or for anyone with a chronic illness…we may feel alone and isolated sometimes, and I think that is just the nature of the beast, but, we’re really not! We have to remember that this is a marathon, not a sprint! This is a day by day situation that is ever evolving. We need to ask for help…if we have a bad day, cry it out, sleep it off and start again tomorrow. Remember…”no one said it would be easy…they said it would be worth it!”