Sometimes It’s Lonely.

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!? πŸ™‚ 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.

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So…what can people do to help their friends and family who are dealing with a chronic illness?? I’m so glad you asked πŸ˜‰ Β Here are some things that have helped me to feel less alone and a little more supported!

  1. Make them laugh. A lot and as often as you can!
  2. Check in with them…not about their illness…just with how they are doing!
  3. Text them “I love you” or “I’m here if you need anything”
  4. Cook them a meal so they don’t have to…because they will not ask you to do this!
  5. Mow their lawn, shovel their driveway, weed their flowers etc…help them out because they will NEVER ask!
  6. Hug them…a lot…even if they don’t want a hug πŸ™‚ (I’m not a HUGE hugger…but this one really does help!)
  7. Take their kiddos out for an afternoon so they can nap…because they will NEVER ask!
  8. Love them unconditionally…and make sure they know that
  9. Text them a favorite memory to make them smile…”remember when we…..that was so fun”
  10. …chocolate…always chocolate! πŸ˜‰
  11. “you look great!” even if their eyes are tired and their hair is a mess…
  12. 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!”

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