Thoughts from a mother of a patient living with chronic illness
Chronic Illness, Chronic Pain, EDS, Invisible Illness, POTS

thoughts from a mother of a patient living with chronic illnesses

We are coming off of a really, really bad couple of weeks of flare-ups from the weather. Last week, the three of us spent most of the afternoon taking turns trying to comfort our daughter while she writhed and moaned in pain.

Shawn, her fiance, took most of last week off to comfort her.  There’s a fair amount of truth in writing when I say that he is packing her around right now.  Her bones are so out of alignment in her body that it is very difficult for her to put weight on her feet.     I just don’t understand why doctors won’t listen to her and give her some sort of relief.   I am really starting to see the toll that these conditions are taking on people that mean a lot to me, and I sure am thankful that my husband is now working mostly from home to also offer some support.

We have such a unique situation in our home, and I often wish that I could invite people to stay for one week.  I’m not talking about an afternoon, because if she has to, she can put a happy face on and try really hard to come to visit downstairs for as long as her body will allow.  I believe that it is very difficult for people to comprehend what living with these conditions, chronic illness, and pain is like because most people only understand suffering from acute pain that usually goes away.  People like my daughter don’t get a break from these conditions.  There is no end in sight for complete relief.

She has been in this condition for almost 6 years now.  Thanksgiving, Easter, Christmas, Birthdays, Mother’s Day, Father’s Day…. they don’t matter to her body and the multiple organs that are affected.   We have not had a sit-down meal together as a family in a very long time.  She is just not physically capable of doing it.   She also doesn’t have much of an appetite, there is little that sounds and tastes good to her.   There is little she can eat.  She has lost an incredible amount of weight in a short time and is developing difficulty with swallowing.

My Mother’s Day is much, much different from most women that I know.  We do not have family nearby.  Our son lives in New England.  (one of the hardest things I ever did was move away from that boy,  and I definitely left a piece of my heart in Massachusetts).   Covid has made seeing him more challenging.   We are fortunate that both of our mothers are still alive, but one lives in Minnesota, and the other lives in Texas.

There was a huge part of me that felt incredibly torn about going out of town last weekend. It was Mother’s Day.  Why am I leaving my daughter?   We didn’t go to get away for Mother’s Day, we went to get away and it just happened to be Mother’s Day weekend.    I anticipated that Emily would be down with the weather that was hanging around and she truly didn’t mind one bit that we went out of town.  It sure is nice to get away from it all to recharge and unplug!

In addition to taking care of ourselves, I think that it’s important for a couple to have interests that they enjoy doing together.  We take advantage of the gorgeous mountains and challenging terrain that we have here in Pennsylvania and enjoy hiking together and also just going for little day trips on the weekends.

There is truly nothing more heartbreaking that I have endured in my life than helplessly listening to her sob because she is absolutely exhausted from living with a condition I can’t stop.

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