Friday, August 23, 2013

August 23, 2013

What a crazy month we've had. We made it (I MADE IT!) to New Hampshire and back! I did surprisingly well, which, of course, has caused me to second guess myself. How can I wander around New York for three or four hours, yet on another day, have to rest to recuperate from a ten minute shower? It makes no sense to me.

I guess I'll give ya'll (After being in New England, I feel as if I'm really from the south now!) a rundown of the trip. First of all, I have to say that one of my big concerns was how I would do with the long drive. It's a nineteen hour drive out there, which we did split up over two days. So, I know that helped. Plus, we stopped every two to three hours just to get out and walk around a bit. Overall, physically, I handled the ride rather well. Another big concern was how I would mentally be able to deal with the drive. I used to just be a nervous wreck when we were on the road, especially in heavy traffic (scary semis!)  around the big cities. But, this was my first trip post- Lexapro and I have to say that it really, really made a difference in my mental state. I was so calm! I mean really calm. Not zombie calm (Wait. Are Zombies calm?), but just relaxed enough that I enjoyed the ride. I didn't feel as if I had to keep my eyes on the road to "help drive." In fact, I spent much of the time reading and listening to music. This gives me hope for the future plane (have I ever mentioned that I've only been on a plane once and that was when I was thirteen?) and train rides we will be taking out East.

Once we finally made it to New Hampshire we did a lot of shopping. There were household supplies and furniture to be bought. Then, there was the carrying and unpacking of boxes. I didn't do much of either. The reason I'm even bringing it up at all is that it has to do with how others perceive those of us with chronic illnesses. I don't think I mentioned that this trip included not only my husband and our son, but his (now) fiancee and her parents. We are just getting to know her family and I don't know that they understand the extent of my illness. I don't like to talk much about it, but, at the same time, it helps to let people know at least some of what I'm dealing with so they know what to expect out of me. So, there was a lot of working and resting and resting and working. And, there were a few trips back to our hotel room so I could medicate and nap.

After a few days, we left them and headed a few hours south to Westport, Connecticut to visit Tim's sister and her family. It was so nice to finally get to see their house and the community where they live. It was just as I'd expected: beautiful! After a good night's rest, we got up, got on the train and headed to New York City!! Those of you who know me know how much I've always wanted to go to NYC. When I got sick (and sicker) I really didn't know if I'd ever make it there. But, with the aid of medication and adrenaline, I was able to go and spend the day there! We walked and rested and then rested some more. I thank God that I have a hubby who understands my limitations and, at times, knows I need to rest even before I do. We had very good maps and guides, thanks to my sister-in-law. Because of that, we were able to plan out what we wanted to see. Of course, we didn't see everything we wanted to, but who could in one day? I was disappointed that we couldn't go to Ellis Island as it was still closed due to the hurricane damage. But, I knew that going in, so we just focused on everything else we wanted to do. We took the ferry to Staten Island. Wow! What a view of NYC and the Statue of Liberty too. We went to Time Square, Rock Center, the Empire State Building, Radio City Music Hall and Grand Central Station (of course.) Most places, we just stood outside and took pictures, but that was enough for me.

 After reading this far, you are probably wondering how in the world I was able to do all of this. Yea, me too. My friend, Cathy (who is also chronically ill) and I, have often talked about adrenaline and it's affect on those who have a chronic illness. It seems as if there are times when the body can produce excess amounts of adrenaline to help get you through an event, a vacation, whatever it is that you might not ordinarily be able to do. Of course, there's a price. Usually, there is a crash, whether it be hours, days or weeks after the seemingly super-human feat. After our trip, I was so interested in this phenomenon that I did a bit of research (thanks again Google.) Here's an interesting article I found. This is in reference to the illness of ME, but, really, it can pertain to any chronic illness: http://www.hfme.org/adrenalinesurgetips.htm

On the medical front, I have received the paperwork from the MDA. Once I fill it out, and have my doctor add his signature and some of my records, I'll send it in and, hopefully, get an appointment at the Louisville MDA Clinic. One thing I didn't realize before researching the MDA is that they will see anyone who has one of the listed diseases they cover (not all of them are muscular dystrophies, some are other diseases of muscle) free of charge. Everything is covered. It sort of  makes me wish I would have donated more to the telethon all these years. Speaking of the telethon, it's coming up in just a little over a week! I have to say, I don't like the shortened version and I miss Jerry!! I have fond childhood memories of planning on staying up all night (key word: planning) watching the telethon, snacks in hand along with my sister and/or friends.

We've been back for a few weeks now and, as of last week, I have been going, slowly down hill again. I've continued to push myself since we got home and I'm now paying for it. It's time for me to listen to my body. If I don't soon, it will just take over with a big crash, and I won't have any choice but to be laid up for a period of time until I gain back some of my baseline.

Well, I'm going to leave y'all (sorry, I couldn't resist) with this: http://www.youtube.com/watch?v=5yCwiaZwiB8

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