When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day. With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick. Other days I can get it all together and don’t look sick at all. It’s those days that confuse people.
I’ve learned that it takes me longer to do things than it does the average human. There are many days that I can’t accomplish anything, but let’s not talk about those days. I want to talk to you about the days I am able to do a few things. The days I appear normal.
Yesterday I started to do the dishes. The dishwasher needed to be emptied, and there were dirties that needed to go in. For a normal person this would just take a few minutes. I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest. I came back after a bit and started on the bottom, I put away the silverware, and needed a rest. After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher. While loading it up I took 2 breaks. Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher. At this point all I could do was make myself a cup of tea. This was the end of my ability to do chores for the day. No one would think that doing the dishes took 3 hours out of my day. I must say that I’m okay with this. I’m grateful I can do the dishes at all. I only wish I could do them every day.
Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time. Boy was I wrong. I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much. I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy. Very dizzy. Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here. (the reason I am dirty a lot of the time 😉 Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours. Luckily I did have the DVR set for my show. I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it. But how many people do you know that can’t get a bath done in an hour?
Then there are days when I seem to be able to go non-stop. Recently I had a weekend like that. We went to a wedding a couple of weeks ago. On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm. The wedding didn’t actually get under way until about 4pm. Luckily, I was just sitting talking with people. After the wedding, we had the reception to attend. On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband. Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving (know that all I did was sit and talk with people). We went back to our hotel, changed and were off to dinner. We were finally back to our hotel around 9pm. I was going full out, all day long. Boy was I beyond tired. Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day. (I did find out that my lip reading skills have improved dramatically.) Of course, I couldn’t sleep due to painsomnia (insomnia due to pain). There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was. This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me. It took a week or more to recover fully. For a “normal” person they could have made the trip in one day. It’s about a 3 hour ride (I can’t drive). We could have gone down for the wedding and come back that night, if I were a “normal” person. Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home. I had a lot of support for this trip or I never would have been able to make it. My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently. The specialist I’ve been seeing for my back called in extra meds for me for the weekend. If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself. I will be forever grateful. While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon. She then came back to our hotel and ironed hubby’s shirt. Without this help, I don’t know if I could have made it.
To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay. We normally appreciate things much more than “normal” people. We care deeply. We can still live a full life, it’s just different than a “normal’s” life. and that’s more than okay.