12 April 2012

#HAWMC Post #12

This morning I looked in the mirror and noticed how tired I looked. Since coming home, I've been doing fairly well. No major flares - of course I have had a number of smaller ones but nothing that a few days of laying low didn't help. But this flare has been hanging around at least 5 weeks if not longer. I can see why I look tired! 

Well, not only do I look tired, I AM tired. And the sad fact is, I am not doing all that much to make myself tired. Every few days I will go do dishes or run a load of laundry in and start it, but if I do the laundry, I am done for the day right now. The main thing that makes me so tired is carrying the basket.  Even with my idea for being able to manage carrying the basket while also managing my forearm crutches. I still have NOT figured out how to keep my crutches on my arms while carrying something in both hands. I can manage small items such as a 16oz or 20oz bottle of Coke, my phone, a bag of chips, etc. If I have a couple of small items I need to carry, I grab a bag and hang it from the hand grip of my crutches. But the laundry basket was a bit of a problem.  I tried scooting it along the floor into the laundry room but that sound just grated on me. With fibro, some sounds can actually be painful. The incessant beat of bass music is one that I do not do well with for more than a few minutes. I just begin to hurt with each bit of pounding. The same way with heavy construction sounds. I just cringe when I hear those sounds. Fireworks can be a problem if I am in a flare when I am around them. Even hearing people speak overly loudly can make me cringe. And yet, because I lived in a nursing home for 2 years, I tend to talk a lot louder than I need to talk because I got so used to speaking louder because of the folks who truly had hearing problems. I can even make myself cringe during the really bad flares. 

I did finally find a way of carrying a laundry basket at least! While I was in the nursing home and in physical therapy, one of the things we had to do for my safety and to make sure we were following the rules was to use a gait belt. It helped give me a feeling of security as well. And in the early days of me standing, Jim would use it to help give me the bit of a boost I needed and of course keep me standing. When I came home, Jim sent the gait belt home with me. He gently suggested that I use it if I planned on walking on unsteady ground and then have someone hold onto it just as a measure of safety, We'd worked on walking on unsteady ground in PT, but being safe is not a bad idea. I generally do not walk on unsteady ground except for the bit of walking from our deck to a vehicle. And generally someone is with me while I am doing that so I feel completely comfortable not using the gait belt. One day, I sat looking at the laundry basket I needed to get to the washer.  But no one was home to help me. I didn't wanna leave it for my hubby or Barb. And then out of the corner of my eye, I kept seeing the gait belt sitting where I'd put it down after cleaning out my bag that hangs on the back of my wheelchair. I began to think about what I could do with the basket. How could I carry it and still control my crutches? Seeing the gait belt out of the corner of my eye gave me an idea!  I grabbed the belt, the empty basket and threaded the belt through a couple of the openings on the basket. Then I fastened the belt around my waist.  It worked! Then I began to put clothes in the basket. And they were not too heavy for me to carry, or I should say they were no heavier than anything else. Now I was on my way to greater independence.  I am so happy to be able to do something on my own, and what's more, I thought of a solution on my own! Here are a couple of pictures of me carrying the basket. 

 But during this flare, I've been doing good to just do the things I need to do to take care of myself. I am extremely fatigued. And this is the bone deep, energy sapping type of fatigue that makes it hard for a person to function or even think! I am forcing myself to get out and do things I've had scheduled, But it's not easy at all. I was feeling a bit better last week and even thinking the flare might be lifting but I was wrong. Just a small ease up. But it came at a great time. It came when the flare was getting me down. And that bit of a respite gave me the break I needed to feel better mentally. I was getting to where I just felt blah. And for me, as long as it is a short term, when I had my one of my psych evals for my disability claim (I'm not sure if I had 2 or 3, but I know the first 2 times I applied for disability I had psych evals and was denied disability) and the 3rd disability claim, I was in the hospital and not alert and oriented for months so if I had an eval, I don't remember it!) the dr asked me how I coped with depression. I told him that when I felt depressed, I would typically retreat into my own world. I'd kinda hunker down in my room and only get up when absolutely necessary. I didn't want my being down to affect others. I'm sure that it still has an affect on my family. He did say that as long as I didn't have extended periods like this, it was a good way to handle the situational depression. When I told him about my experiences with SSRI type anti-depressants, he said that it sounds as if I should stay as far away from them as possible and even seriously take caution if I find myself to be needing another type of anti-depressants. For me, I was on low dose SSRIs (I tried both Zoloft and Paxil).  They made me very tense, I'd wake up in the morning and have such horrible jaw stiffness from clenching my jaw that it'd take a good 30-45 min before I could open my mouth very far and it was pretty painful waiting on it to relax. I became anxious after taking them. Then my level of anger and frustration rose. I had no patience with people. I took what was considered a sub-therapeutic dose of the anti-depressants because I was taking them to treat fibromyalgia not depression. The thought is that they help the sleep disturbances associated with fibro which are believed to be linked to serotonin. And since SSRIs increase the level of serotonin in your body, the theory is that taking the SSRIs will help a person sleep better. One problem of sleep with fibro is that you sleep, but you don't sleep well. You can sleep 12 or more hours and wake up just as tired as you were before going to sleep. You don't fully get into the REM state and so you don't feel refreshed when you sleep.  Pain also can disrupt sleep.

During the time I hunker down, I do a lot of reading, I don't get online too often, watch some TV, and kinda distract myself as best I can. I also do some sleeping of course, because in a flare that bad, sleep is my friend and sometimes my enemy when I want to be awake and my body demands sleep 14 or more hours a day.  I try to limit how much time I do this. As something done short term, it helps me handle the situational depression of a long lasting flare. But if done for more than a week or so, it ends up making the flare worse in some ways. That said, there are some flares that, because of how the affect me physically, drive me to my bed. I do the same things I do when I hunker down to deal  with the situational depression, but with one difference. I don't try to limit the time others are with me. I welcome company. During the time I am dealing with the situational depression, I don't want anyone around for very long. I hate doing that to those I love but I also don't want to drag them down.

I surprised people when I was in the hospital. I wasn't all that depressed. I dealt well with everything that hit. The hospital staff was surprised I did so well on a mental and, especially an emotional  basis. At the nursing home, I had a few bouts where I was down. But I had more problems with getting frustrated over a lack of response about some issues I was having. And when I get overly frustrated, I get angry. Anger leads to tears. So because I was angry over something and that caused me to cry, one of the social services staff suggested I needed anti-depressants. My temper quickly flared and as usual when that happens I got sarcastic. I snapped at her, "Only if you want me suicidal!", then I reined in my anger and told her more calmly that I had a very bad reaction to certain types of anti-depressants and was cautioned that my reaction could end up leading to the suicide risk that is discussed in the black box warnings on anti-depressants. I explained how I was cautioned to avoid anti-depressants unless there was absolutely NO other option because of how I react to them. So she wisely stopped pushing an anti-depressant on me. But I was not depressed at the time. Just frustrated over a situation I was trying to get fixed and not being heard on. In a way, I was so glad to get assigned to a different social services person.

I am just thankful that I have had only minimal depression with my flares etc. 


  1. Well bless your heart. Who wouldn't get frustrated and slightly down with all you are currently dealing with. And kuttos to you for your creativity on solving your problem with the laundry. It never ceases to amaze me when I read how we all come up with solutions to overcome whatever we are trying to do. I swear that anger truly does motivate me alot of the time. For me it has alot of energy in regards to creativity and even just plain old energy if I am angry enough. But I don't recommend staying in the angry mode all the time. That can get exhausting. Did you work with a therapist that teaches you how to do things like laundry etc. with your conditions? I can't remember the name of them but they aren't a PT person. They teach one how to do everyday type of things like you are now trying to do. If you are seeing a PT person now, ask them about this type of therapy or explain some of the issues you are having like doing laundry, etc. and see if they isn't some things out there to assist you with these items...Maybe a walker with a basket on it or something like that for when you are in your own home. You have so much to be proud of! You are accomplishing so much! Just try not to overdo too much with the flare riding along right now.

  2. Anger will get me moving too. But I truly don't like being angry. And right now, I don't have much to be angry over! So it's hard to stir up anger. And as you said, it gets exhausting. And I do NOT need more exhaustion right now!

    An occupational therapist perhaps? I've worked with them off and on most of my life. My OT at the nursing home was great. She got my left hand working better. It was contracted and the ring and pinkie fingers of my left hand did not relax with the others on my left hand and my right hand. I am sure I could always pick Donna's brain just as I occasionally do Jim's. They were my OT & PT respectively, at the nursing home. The thing is, I find myself doing things I was taught in OT as a kid. I just don't think about what I might need to do as often as I should probably. I could easily strap my laundry basket to my walker. I just don't use my walker enough to justify it at times. We have a few places that are a bit narrow for getting my walker through, one being right by the washer and dryer. There are no real modifications we can make to make the space wider. It just is. But I have absolutely NO trouble maneuvering my crutches through that same area.
    This is my hand before OT

    And this is after OT.

    Right now, I am not seeing either PT or OT. My pain doc decided to hold off on PT because he knows me. He knows how I am tempted to push myself at home when I am on my own. So he would rather me continue what I was doing in the nursing home, exercise-wise anyway, and then do what I know I need to do around the house and in order to keep my joints a movin'!

    Aside from when I was younger and then those few months (Apr-July I think 2011), I've never had a lot of formal OT. But that doesn't mean I don't benefit from what I learned both as a kid and at the nursing home. At the nursing home, our primary goal was getting my left hand working better. This was important as I am considered left handed since I write lefty. I do most other things right handed though because I've always done it that way. Even now, I do many things right handed. I mainly use a chef's knife left handed, and then things that take a bit of strength I do left handed because my left hand is stronger, despite the contractures.

    Thanks so much for the suggestion. I know a lot of people do not know that there are services like OT out there. In fact, you've just inspired me to write something!

    For once, I am doing good about not overdoing things. I have learned that lesson all too well I think. I hope you are doing well!