The Day After the Day After

No, I did not survive a nuclear explosion, I just feel like I did.

I’m talking about when a chronically ill parent decides they are going to give it their all, usually to do something stupid if not impossibly beyond their body’s capabilities, for their child.

On Friday, Grant and I took Tyler into New York City for the first time, to the Museum of Natural History.  I had not been to the city in five years, right after Tyler was born, even though New York is about an hour away from me.

On Saturday I remembered why that was, as every system in my body, gastrointestinal, joints, muscles, brain, etc. screamed in agony and protest.

But first, let me tell you how I got that way.

On Thursday we were supposed to go to my cousin’s house for a Jewish New Year celebration.  It was early for the kids, the dinner was at 3:30, which is good for the kids, but is right in the middle of my nap time.  I am at the point where if I do not take a nap, I cannot make it through the day.  I mean, I will involuntarily fall asleep at some point or get a major headache or be sick to my stomach if I do not lay down.

I couldn’t picture getting through the day just continuously drinking coffee so I laid down for an hour and a half, but when that alarm rang there was just no way I was getting Tyler and I ready and sitting through a usually really good time, you know?  I called my cousin, I can barely remember the conversation, and passed on our regrets.  He is a great guy and understands my last minute cancellations.

And then my feet and hands began to swell more than they already were and the nodules made themselves known.  I have this topical cream that I rub into my joints and Grant was rubbing my feet.

And then came Friday.  New York City Day, Tyler’s First Time in New York, Going to the Museum of Natural History.  Grant was looking forward to it even more than Tyler was.  To disappoint them and say I could not go was not even in my realm of thinking.  My feet may have had lumps in them, but I was going.  I find I can walk more when I bandage my knees. We were going to try to minimize my walking, by taking a cab to the museum and getting a wheelchair for me.

But it was still more walking than I do in a week; walking from the parking deck to our train station, walking through one of the largest train stations in the world to get to a cab, and walking up to the entrance of the museum where I could finally get a wheelchair.

Yes, there was a damn good reason why I had not been to New York in five years.  And by the way?  It was like I had never been away, New York will never change.  I’ve either lived in one of the boroughs or been an hour away from my New York my whole life.  I have been everywhere I need to go, most of the museums, Greenwich Village, SoHo, a few Broadway plays, seen all the tourists spots when I was little or when I was older with visiting friends.  As far as I am concerned, from where I painfully sit now, I never need to go back there again.  I still think it is the greatest city in the world, a must see in your lifetime, but I have pretty much done New York and the next time there is something in there I want to see, I will just buy a book on it and become an armchair or bed traveler.

So even though I was in a wheelchair, I can walk.  But just because one can does not mean one should.  

Grant was particularly looking forward to a the newly refurbished exhibit on Early Man, but particularly the tools and drawings of early man.  I had forgotten what being in a museum with Grant is like.  When he comes for something in particular, you could just leave him there for the next three hours and see the museum by yourself.  Tyler was whining and rightly so as most people would find this extremely odd behavior, especially with a five-year-old in tow. I had no choice but to show Tyler other parts of the Early Man exhibit on foot and then on to Gems and Minerals as Grant was still riveted to ONE PART OF ONE EXHIBIT.  I had to take Tyler to the bathroom on foot.

Grant was very good about pushing me through the museum, I never had to walk anywhere far, but the little walks added up.  I walked through the special exhibit of “The Largest Dinosaur Ever Discovered” and through the gift shop.  The last thing on our “to see” list was the special frog exhibit. There were strollers parked outside the entrance to the exhibit and we asked if we could take a wheelchair in.  The woman taking our tickets asked me, “Can you walk?”, which I thought was kind of a strange way to phrase things, and said that it was awkward having the wheelchair in the exhibit.

So although the exhibit was small by normal people’s standards, I walked the whole frog exhibit.  I saw the most amazing frogs ever, but again, next time I will just buy a book.  I was hurting so much. Walking with nodules on the soles of your feet is like walking on rocks inside of your feet.

And then Grant wheeled me to the exit where I had to do the same amount of walking I had to do to get there in the first place.

Yesterday I just got sicker and sicker as the day wore on.  I spent most of the day laying down, trying to sleep through the pain and nausea.  I was completely useless.  Gone went my plans for the day.  No karate for Tyler, no food shopping, no buying a birthday gift for a kid whose birthday party is today.  I was too sick to blog, thus the title of this post.

I told Grant that Tyler was of an age where he could handle taking him to New York by himself and that I would not be going in the future.

It is a sad life but honestly I feel better and feel almost good and well, if I stay at home and do nothing.  When my mother comes and does all the cooking and dishes and cleaning, I actually feel like I am on the mend.

I am at that point where were it not for Tyler and Grant I would choose to be completely housebound.  I’ve got the internet, I’ve got a television and an iPhone. What else do I need?

Who’s with me?

If I never had had a child, and had someone do my hair and makeup every day, I would look just like her.

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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Bipolar Disorder, Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.
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7 Responses to The Day After the Day After

  1. I would say the worst part is knowing that associates and family, especially children don’t understand. It’s good that your husband is so supportive. I have just wisps of these diseases but compounded by a long standing depression. People don’t understand how much it takes to just get through a day, not to mention to try to hold or be successful at a job. There is little energy left to enjoy life beyond the necessities. I hope you can find good health. Bob.

  2. SickMomma says:

    I have these Learning Experiences too. :-/

    I’m sorry it was so hard on you.
    SickMomma´s last blog post ..A Happy Anniversary

  3. I’m so sorry you’re feeling so poorly. But bet it’ll be a lovely memory for your son!
    Megan (Best of Fates)´s last blog post ..An Embarrassing Weekend in Baltimore

  4. Penelope says:

    I know this isn’t something you can do soon, but seriously once you’re in a situation with health insurance (because for some reason I think you don’t have it?), look at what you need to do to get a scooter or a portable powerchair. And then when you go places tell people you can’t walk through their “little” exhibit. Pain from walking and inability to wheel yourself shouldn’t be keeping you from going out and doing things! I don’t mean that in a “heal yourself” way or that you should be able to do everything, but that an inability to walk or self-propel shouldn’t be what is holding you back. It’s worth finding the medical folks who will fight for you on this as well. I know it seems like a big step, but getting mobility aids that I could actually use is probably the biggest thing that has helped me live within my limitations. (I have EDS, some of the side-EDS issues, and probably something autoimmune on top of it; depending on the day/situation I use crutches, manual wheelchair, or power wheelchair)

  5. Tendai says:

    I don’t think I could handle such a trip either, Emily. My body shuts down too like I’ve been unplugged. It was a great sacrifice you made for your son. I know that you really pushed yourself because of love.

    I wish my insurance would pay for a power chair but it doesn’t. It would be nice for those of us who have physical limitations had a home health worker and power chair, life would be a little easier for us. But instead of wishing for things I can’t have, I just stay home because trips to my doctor are painful and exhausting enough. The cost is too high. So I totally could relate to your post.

  6. mamasick says:

    Tendai,

    I don’t know of anyway to get a scooter or a power chair unless you are 70 years old. You could be in perfect health but if you are old, you can get one. The disabled young people are once again forgotten. I would love a home health care worker but I can barely afford to live in a home! Instead my apartment looks like a tornado hit it and I clean when I can. It is never neat and clean at the same time, ever any more.

    It’s sad to say, but I am at a point in my life where the cons of entertainment are overwhelming the pros and I like I said, were it not for my son, I would not be putting my body through such torture.

  7. Denyse says:

    Emily,
    I stumbled onto your blog when I googled “what not to say to the chronically ill”. I’m struggling with people saying dumb things to me and trying my very best not to hurt them. And today is my “day after”, where I am paying dearly for pretending to be normal.
    Thank you for your blog- I will be a regular visitor. I’m new to this chronic illness thing and I hope to learn from your experiences.

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