Limited mobility can be isolating

July 12, 2017

I recently attended my 40th high school reunion.  There were so many activities planned for the entire weekend, I had to pick and choose what I wanted to do, or rather could do. This was the first time in a long time that I really wished I didn’t have RA and lupus. They kept me from participating in the bike tour of my hometown. I can’t ride a bike anymore.  I can barely walk most days. And I couldn’t do more than one activity a day, though the first night I did go to a junior high get-together and then a larger party with others. I was absolutely exhausted when I got home.

The main event was on Sunday at a local brew pub. Everything I attended was fun, don’t get me wrong, but because of my limited mobility I didn’t get to see many people I had hoped to see.

I sat down almost immediately after arriving at the reunion near the entrance so I could see who might be walking in. Also, a couple of friends went up to some people to tell them where I was. I’m sure they were thinking I was lazy or something, until they saw my cane. The Miriam they knew could walk around easily.

I learned some lessons at the reunion about being sick. First, it can be very isolating when you are unable to move around freely. Unless people are specifically looking for you, you probably won’t see many old friends. Some people didn’t know how to react to me with a cane. Some thought I was using it because I had sprained my ankle two days before the reunion. I had posted a photo of a badly bruised and swollen ankle on Facebook. My old friends were very tolerant of my situation, at least those I saw. I learned by watching these old friends that able-bodied people seem to take their mobility for granted. Someone like me can only watch from the sidelines.

A few of my old friends were very accommodating, coming to sit with me and chat for a while before moving on. I really appreciated that.

While I had fun at the main event, I had more fun the night before in the smaller group. Talk was easier and my limited mobility didn’t seem to be a problem for any of us. Plus, we had 40 years of life to catch up on.

There was also the issue of my energy level, or lack of. I left the reunion about an hour before its intended end. That was okay with me. I was tired and hurting.  As it was, when I was leaving, I bumped into two other old friends who wanted to chat and there was no place for me to sit. I finally had to end the conversation because I just couldn’t stand anymore. I’m hoping they didn’t think I was being rude. I would have loved to have stayed and chatted more with them. RA and lupus had other ideas.

I’m a positive person, so it was a shock to me that I was a little sad after the reunion. This was one time that the RA and lupus really got in my way. I suppose I could have gone up to people and reintroduced myself, told them I have a medical issue and asked them to come sit down and talk, but I didn’t think of that. Plus, getting up and down would have tired me out much more quickly than sitting and hoping to see people.

There really is no good way to go about seeing people at a large gathering. My high school graduating class had about 1,200 students. I was told around 230 or so of us were at the reunion.  That’s a lot of people. And some of us brought significant others with us.

The next reunion will be in 10 years. I’m guessing that my limited mobility will be less of an issue as many of us will have other medical issues.


More on fatigue and chronic illnesses

June 8, 2016

Yesterday I talked about the fatigue that comes with RA, lupus and other illnesses. I received a number of private emails and some text messages from friends who told me that they don’t know how to make others understand how bad the fatigue can be. It’s a tough one to explain.

When I feel the fatigue, like I did yesterday, it’s pretty obvious I’m extremely tired, but it’s more than that. As I said yesterday, the fatigue can be debilitating. That’s not an exaggeration. By the time I had finished making dinner last night I had broken a glass trying not to drop and I could barely make it up the stairs to go to bed – at 8:30.

Fatigue is one of the most common symptoms of chronic illnesses. Healthy people do not understand that this isn’t being lazy and it isn’t “just tiredness.” It’s so much more than that. It’s a tiredness that gets in the way of everything. Some people cannot physically move because the fatigue is so bad. Walking, even a few steps to the bathroom, can require extreme effort and cause the person to need a nap – sometimes in the bathroom.

I get fatigued from time to time – like yesterday. I have had problems walking just a few steps. When the fatigue sets in, all I want to do is sleep, and sometimes that’s difficult because I’m also in extreme pain, which won’t allow me to sleep. It’s a vicious cycle. Everything hurts more when you so extremely tired, you can’t move. This is where I was last night after dinner. I somehow got myself upstairs and in bed, but did not have a restful night, which I was hoping to have.

Everyone deals with fatigue differently. I try to get more sleep and I make sure I rest for at least a day or two after I start feeling a little better. For me, today was a “lazy” day. Yes, today I am being lazy. I stayed in bed until 9, set up delivery for one of my meds, went through my emails, finished a project I started months ago, wrote half a Cubs column and I’m writing this while watching the Cubs game on TV (they’re in Philadelphia today and for that I’m grateful since I doubt I’d have been able to handle just getting to Wrigley today).

Yes, this is lazy for me. Really lazy for me is staying in bed all day and that wasn’t possible because the house was getting cleaned today so I had to be up. Even though I’ve done some work and gotten a lot accomplished, I have stayed in my office, except to get something cold to drink. I have almost everything I need in here for the day – two coffee makers and coffee, my computer and a television to watch the Cubs.I am not moving around much on purpose and this has helped. I no longer feel fatigued, I just feel somewhat tired. And I’ll take this “tired” over fatigue any day. And to help myself further, I canceled today’s plans with a friend and also tomorrow’s plans.

I was asked to offer some suggestions on how to convey to healthy people what fatigue really is and also what healthy people can do to help those who are experiencing fatigue. This isn’t easy.

I tell friends and family different things about my fatigue depending on how close we are or how much those are trying to understand what is going on with me. For the most part it’s a debilitating tiredness that enhances pain and reduces energy to the point where I can’t do anything. I will tell them about not being able to walk to the bathroom. I will even tell people that there are days, like today, where I don’t think I could make it to Wrigley. Most everyone I know gets it when I say that because I try not to miss any home games. There were days last year where I got to the games but struggled to stay awake during the games. That’s extreme fatigue. I also tell people that when I experience extreme fatigue I can’t write and I certainly am not well enough to drive my car anywhere let alone try to think clearly.

Healthy people who want to help a person experiencing extreme fatigue need to ask the fatigued person if there’s anything they can do to help. If you know a chore needs to be done, you can take it upon yourself to do it without being asked or waiting for the fatigued person to get around to it. You can offer to make dinner or order in. If the fatigued person says he or she needs nothing but rest, honor that statement and let the person rest. You can check in on him or her once in a while offering something to eat or drink, but give that person some space. Those of us who experience extreme fatigue on a regular basis know what’s best for us and sometimes it’s just being left alone. Also, keep in mind that the fatigued person may be experiencing “brain fog.” This is well documented. It’s really hard to think straight when you’re so very tired and in so much pain. Sometimes the best intentions contribute to the person’s fatigue rather helping as intended, so understanding, patience and compassion are greatly appreciated.

I’d love to hear how others deal with their fatigue and how they try to convey it to healthy people. And I hope this post makes sense since – I make no guarantees.