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.


Sometimes you just can’t move

June 7, 2016

Having a chronic illness means sometimes you just don’t feel well and you just can’t do anything, or not as much as you usually do. Such is the case with me today. I had intended to try to write a blog entry at least every other day, but the past 11 days have been very difficult for me and writing here was last on my list of priorities.

What was so important that this blog was put down as my last priority? For me, 10 baseball games in 10 days and then having to write about the games. But I even prioritized that. Instead of writing every day, I actually started the column 11 days ago and put it in draft form. By the time the home stand was over, I had decided to sum up those 10 games using some of what I had already written. I deleted some paragraphs and brought the column up to date and published it last night. For me, it was a throw-away column, just something to have up there since I hadn’t published anything in almost two weeks. That throw-away column was promoted to another site for which I write – it was a “Spotlight” piece.

I’m very glad I did that last night because today is not a good day at all. Everything hurts, my fingers are swollen, typing is very difficult and I’m exhausted. I get days like these fairly often, especially when I’ve pushed myself too much for too long – like going to 10 games in 10 days and then exchanging a Croc Pot for one that actually had all the pieces I needed and then going to Costco. That did me in.

This is a common occurrence with RA, as I’m finding out through an online support group. Sometimes the pain and fatigue are so bad I just cannot do anything. This is where prioritizing what needs to be done on any given day is so valuable. Today’s priorities were getting out of bed, putting groceries away after my boyfriend returned from shopping and then not pushing myself.

There are people who might feel like I do today and might immediately call their doctors. I’m not like that. I know, after so many years of ups and downs like this that all I need is to take it easy, take a nap if I need to and not push myself. Tomorrow may still be a rough day, so I’ve left a message for a friend who was supposed to come over telling her I needed to cancel and asking if we can get together next week. I don’t need a doctor to tell me to rest. And I will not increase my prednisone, even for one day, to help with the inflammation I’m experiencing. I’ll tough it out like I always do. I reserve the right to call my doctor and increase the pred, but it’s not on my agenda.

I am very lucky. I have very understanding friends and family. They may not be happy with me for canceled plans, especially ┬álast-minute cancellations, but they have been understanding and helpful. I feel badly for those on the online support group who say their friends and family do not understand and call them lazy. It’s hard to make someone understand you just can’t move. It’s not laziness. It’s pure pain and fatigue and it can be debilitating.

And on that note, I’m going to go and take a nap.