A Day in My Shoes

Benny recently recommended that I write something describing how I go about my day – to help people understand how I cope, because I was explaining how people seem to be under strange assumptions concerning what I do to deal with my chronic illness. I’m taking his advice! Also, several have asked, and I want to help them understand as best I can. 

I usually start my mornings waking up as gradually as I can.  I am incredibly groggy and stiff, in the morning, but I try to ignore whatever is hurting.

Getting dressed is hard. I like to lay out my clothes the night before, because it’s hard for me to make decisions in the morning – especially when decisions need to be made quickly. At the same time, that might not be helpful, because my skin reacts differently to different fabrics and cuts on a day-to-day basis. I might put out a skirt and blouse for a day, get up that morning, and realize that anything cinching around my waist will cause too much pain, so I wear a dress instead. I try to gauge what I will be able to wear by the forecast, but it doesn’t always work.

Benny blesses me by making breakfast in the morning. If he didn’t make it, it probably wouldn’t happen. Since my brain seems to barely function, thinking through preparing something and actually doing it seem like two huge mountains of work. When we first were married, I really tried, but he gradually took over without any decision being made. I was very thankful and relieved.

We eat breakfast, have family devotions, and then my day begins. If it’s a work day for me, I go to work. Although I can’t be explicit about my workday, I can say that I work for five hours, five days a week, and I spread out the duties in my client’s home over the five days in such a way that it doesn’t exhaust me more than it needs to. I get home around 2:30PM, exhausted, and try to sit down for awhile, collect myself, and reboot as much as possible before mentally switching over to “housewife”.

At home, I try to keep the house generally neat and uncluttered. If there’s only a little bit to clean up every day, it’s far less stressful and physically demanding; however, sometimes I can’t even do a little, and rooms get away from me. Once a week, I dust thoroughly, vacuum, or scrub floors. Rarely do two of those overlap in a day. I keep a clean house because messiness stresses me to a point where I feel immobilized by the thought of having to gather enough strength to clean it up. Every week, I try to include a more vigorous task, such as wiping down cupboards or cleaning windows, but these rarely get finished because of everything else.

I’m sure it sounds like I have it pretty easy – light cleaning every day, with other tasks spread out – but it isn’t that simple. Every task has to be outlined beforehand. For example, if I decide to clean the living room, my list might look like this:

Clean living room

-clean up floor

-clean off coffee table

-put away books and CDs

-straighten up bookshelves

-dust

-vacuum

-wash windows and mirrors

-wipe off coffee table

It seems a little excessive, but if I don’t write it all out, it’s hard to finish, and I’m constantly worried about forgetting something. My “to do” lists are detailed, and I write them every day, including the things I do daily. A recent one:

To Do

Dust:

-living room

-bedroom

-bathroom

-study

Shower

Dishes

Supper

Sweep kitchen

E-mail Dad

Clean bedroom

For every task, I will have to convince myself to take it on. I rarely feel up to it, and I would rather sit and nurse my aches and pains, but I force myself to do everything because it’s my job. I’ll convince myself to dust and take fourty-five minutes to do it. I plan to take at least two hours to prepare supper, so usually by the time I’m done dusting, it’s time to start cooking. First, wash the dishes. It will take me awhile, because I take ten to fifteen minutes to prepare to wash dishes – by stacking them, putting hot water in the sink, and making sure there aren’t dishes hiding in other places. Washing them usually takes around half an hour. I have a stool to sit on so the standing doesn’t tire me overly much, because I need to be careful about using up energy before I even get around to making supper.

After the dishes are washed, I can start thinking about supper. I wipe down all the surfaces, then I look at the menu. I write out a monthly menu, which keeps me from stressing about varying the menu and forgetting groceries. Maybe it’s an easy day and the menu says I planned for spinach omelets. First, I get out all the ingredients I use for omelets: eggs, cheese, whatever meat I have, potatoes, corn, spinach, and perhaps other, random things. I chop up or measure everything into separate bowls, just as you would see on a cooking show, so everything is prepared, then I set out all the dishes I’ll need: plates for the omelets when they’re done, a spatula or two, the whisk, the skillet, and a bowl to whisk eggs in. All this preparation usually takes me half an hour to fourty-five minutes. Then I start cooking. Omelets are relatively easy. Cook the potatoes in the bottom of the skillet, whisk the eggs and chopped spinach together and pour over potatoes, flip omelet and add ingredients, put on plate. Half an hour to fourty-five minutes later, I’m done. This process seems overly complicated, but it’s the best way I’ve found to cook without causing undue stress.

When supper is eaten, I do internet tasks, which I try to keep short. When that’s over, I might take a shower. This is probably the most exhausting thing I’ll do during my day, because it requires constant activity and doesn’t allow for breaks. I usually take an hour to prepare, shower, get dressed and clean things up afterward. If I’m having a bad back day (meaning I can’t stand too long; chronic back pain means it always hurts – some times worse than others), I either take a bath or use my shower chair. The rest of the evening I usually spend off my feet or doing something with Benny. Once in awhile, we’ll walk or bike somewhere or nowhere. Sometimes we finish some cleaning/organizing task together or just sit around and do nothing. During school, I put a plate and note together for Benny’s lunch.

I really am very weak, and this is something I abhor about myself. I was once active and involved in other people’s lives. Now, social anxiety and the need to preserve energy keep me at home unless I need to go out or unless someone kindly plans an event. I do not, however, limit myself unnecessarily. I often can do more and am willing to do more active things when asked, but people often – while trying to be kind – refrain from suggesting things they think might be too much for me. Although I understand wanting to be careful, I know my limits better than anyone, and asking me to do something that may tire me or hurt me isn’t something to avoid. I have no problem with declining activities I know will do more harm than good, and I prefer being able to make that decision to it being made for me.

Depression as a result of loneliness is something I constantly fight; I have few friends here, at this point, and Benny has to tend to school and composing/practicing. I try to fight this mostly by having a book on CD to listen to while I’m cooking or cleaning and also by having open house hours when women are welcome to visit me. I desire and need almost constant companionship. I used to think I was a loner, but I’ve found that to be alone is something I don’t actually enjoy unless I’m having personal devotions (although I’m not truly alone then, either :)). When people come visit, I am often thrilled beyond words.

Which brings me to open enthusiasm. Many people think I’m quiet, reserved, and shy. This isn’t so much true as it is true that in public situations I find it difficult to keep from panicking. The way I fight panic (which is something I fight as a socially anxious person) is by mellowing out. People who meet me in the privacy of my home are often surprised by the openness I am comfortable with there. When I’m in my personal space, surroundings which are known, comfortable, and predictable, I am in my element. Especially if Benny is there, I feel safe. Being in public feels incredibly unsafe, no matter how illogical that feeling is, and I tend to reserve all emotions to damper the one which feels most threatening. One of the reasons I encourage people to come visit is because they get to see me at my most comfortable. I avoid anything even remotely resembling a party for this reason and also because I have a hard time concentrating when more than one person is speaking at once. When this happens, my mind is frantic to grasp onto anything, and when my brain is frantic, I can’t concentrate on anything.

One thing about dealing with my brain which is hard for a lot of people to understand is that it doesn’t process things quickly. As a result of this, everything I do has to be thought through. Most people do things mechanically, but it is rare that an action becomes so familiar I can do it without thought. When I’m walking, I move slowly when crossing the street or a lane. When I’m driving, the faster I have to react, the more stressed I am. Getting ready to go anywhere, I stop at the door and think through anything I might have forgotten (to the great frustration and training in patience for my husband). I can have a conversation with a person, but I think through my questions and thoughts more slowly than many, and I rarely speak before knowing exactly how I will say a sentence. Benny has learned to ask: “Are you avoiding the conversation or are you thinking about what to say?” when we’re talking. I may think about a conversation for days or even weeks before I feel as though I’ve full processed everything that was said. People say they hate it when they think of the perfect response a few minutes too late… I usually think of a response whole days later.

There are other things I deal with differently than other people… to mention them all would take far too long. I welcome questions whenever people have them, and few questions do I refuse to answer. To end, I’ll make a short list of things an “outsider” can take from this.

1.      You don’t need to show me kindness by not asking me to do something with you because I might be tired or in pain. I’m always tired and in pain! You can show me kindness by asking and letting me decide, not really caring how I answer.

2.      By the same token, you don’t need to do things for me to help me avoid pain and exhaustion. If I need help, I will admit it when you ask me.

3.      If you really want to know me, visit me in my own home. I love visitors, and when they are in my home, the situation feels far less threatening to me.

4.      Understand that I process things slowly. If I am moving slowly or taking a long time to respond to a question or comment, it isn’t because I’m trying to frustrate you; I move at a different pace.

5.      I need companionship like any person; I just have a limited way of receiving that companionship.

6.      I don’t like idleness, and I don’t coddle myself, but I also am careful where I expend energy. If I save energy by not doing one thing, I can spend it doing something else. This is a matter of survival. This means I will often leave aside things other people see as “correct”. One of the things I don’t expend energy on is open excitement. I’m really and honestly excited in my heart, but the energy open excitement takes isn’t worth wasting.

7.      I choose to live life outside of my chronic illness. It debilitates and frustrates me every single day, but I try to live with an attitude of thankfulness for all I can still do. You can ask me how I’m doing – I’ll be honest if I’m not having a good day – but then I’d rather drop it and talk about better things-like how glad I am you took time out of your day to say hello! 

Things I Wish People Had Told Me Before I Married

I will be honest with you; not many people told me things that were actually helpful before I got married. It became really easy to identify who would give me what sort of advice. The ones who had gone through several serious marital (or nearly marital) relationships would “wish me luck” with a sarcasm that said their relationships had been poisonous, so I should expect that too. The ones who had worked through a marriage that was difficult always said that the rose-coloured glasses would come off, and I was in for a rough life. People who were happy in their marriage were most genuine in wishing me a blessed future, usually saying – quite honestly – that marriage is hard, sometimes, but also a great joy. When I married, the advice had been so inconsistent, I wasn’t sure what to expect, and I found that all of the advice and none of it truly applied to us. There were some things, however, that I wished people had told me before I married; since people are marrying every day, I wanted to share these things and hopefully help others either about to be married, new to marriage, or perhaps even wrinkling. The list is, of course, determined by my personal experiences, so it won’t apply exclusively.

1.      People say that if you act in the way you want your partner to act, they will change. I think a lot of women translate this to “if I always serve my husband well in this action, he will serve me well in ____” Sorry. It doesn’t work that way. You have to actually say: “I consider this service to be an equal to this service. Even though it’s hard for me to ____, I do that out of love for you. I know ______ is hard for you, but could you sacrifice a little in honour of mine?” It isn’t selfish to ask for what you want as long as you’re willing to allow your spouse to ask for what he or she wants.

2.      We’ve all heard that we shouldn’t nag and we need to love our spouses in spite of faults, but you occasionally need to lecture each other. You don’t have parents, anymore, who can tell you your motives are off, your actions are childish, or you’re doing something wrong. The hard thing is to choose those lectures well, and I will emphasize the word sparingly. You might only need to say one sentence, depending on how well you phrase and communicate what you’re saying. Make sure you aren’t being accusatory, have the right motives, and be certain that you’re actually pointing out something that will make a permanent difference in your lives. You don’t need to lecture your spouse about not doing the dishes or remembering a promise, because those are temporary and can be fixed gently. You may need to call attention to ways that your spouse handles stress or manipulates you, with or without realizing.

3.      And here’s the one that might make people uncomfortable, but I’m going to say it anyway, because it has been vital to my own marriage and is applicable to all marriages: have sex as often as the spouse with the highest sex drive wants to have sex. Better yet, if one of you feels the inclination, it had better happen. This will be really hard for the person with the lower sex drive. There is no way around it, because you are two people with two different brains and two different bodies. Why do I emphasize this so strongly? Because infidelity is one of the top reasons for divorce. Adultery on the side of the man is a little more complicated than that (my next point), but in general, why shouldn’t you err on the safe side? Paul says people should marry so that they don’t have to “burn with passion” (1 Corinthians 7:9). If your spouse is interested in sex and you say you aren’t interested or you’re tired, they will desire a release elsewhere, even if that wouldn’t be their first inclination. Obviously, the first inclination was to share passion with you! It is a sacrifice, but it’s worth it.

4.      Men aren’t made like women. Relationships to women are permanent, lasting, and are maintained even over long distances. To men, they are temporary, and it’s not so important to keep friends as to have them. When a woman moves from Arkansas to Colorado, she’s going to keep in touch with all her friends and probably make new ones. A guy will just make new friends and often not worry too much about past ones. All this to say: most men aren’t unfaithful because they want to be. Because men and women view relationships so differently, I would imagine that many couples deal with unfaithfulness on some level or other, whether it be looking at pictures of other women, watching pornography, wanting other women (fleetingly or not), or sleeping with them. This is something that women, as wives, teach their husbands – to value the relationship and remember that it is meant to be maintained over time. And they will probably have to do it multiple times. Wives, it is crushing, and it will break your heart, but it isn’t because he doesn’t love you or want you. He just needs to learn to constantly remind himself that he chose you, and by choosing you, he chose to forsake all others. And you can help by reminding him and being understanding and loving when he slips.

There are other things, of course, that have been helpful, such as “Don’t expect your spouse to read your mind.” Oh, yes. I needed that one. Or, my personal favourite: “your spouse will do things that drive you crazy. Get over it.” Essentially, marriage is hard in that people are selfish beings. When you aim to serve your spouse in your marriage, it seems like every hardship is smoothed over as a result of service itself. If something is hard, it’s probably because one of you is holding on to something and refusing to step out of the “safe” or “comfortable” zone. Once you recognize that, you can attack a problem by seeking out whatever may be holding you back and fixing it.

And speaking of service, I should fix my husband’s lunch. 

The Monster I’ve Become – Living with FMS

It’s almost two in the morning. I’m exhausted, and yet my brain won’t turn off nor will my body relax enough to go to sleep. I’m in relentless, arthritic pain in all the major joints of my body. My hands and muscles ache, and my skin feels like the lightest touch of fabric would make me weep from the scraping. I’m freezing, but my body is feverish. Every several minutes, my back twinges with such severity I have to reposition in order to stop the spasms. I know that if I stay mostly still, I’ll be able to deal with the pain. If I have to move, I move as slowly and deliberately as possible. If I move too quickly, I’ll fall over because of dizziness and visual disorientation. I might even temporarily pass out. When I go to sleep, I’m likely to have nightmares. I will wake up at least once in the night because I’m having a hot flash, though in all likelihood I will wake up three or more times. When I wake up in the morning, I’ll feel as though I didn’t sleep at all. I’ll lie in bed for many minutes, slowly stretching my joints, preparing to get out of bed. When I finally stand, my entire body will be stiff, and anyone who’s close will hear my bones cracking. I’ll pick out my clothes depending on how sensitive my skin is to fabric that day. Then I’ll put on a smile and leave my room, ready to greet my friends and family as though I am perfectly healthy. If I’m having a good day, the pain will be a mere nuisance. If I’m having an okay day – which is most of the time – I’ll have some pretty serious pain going on, but not enough to inhibit me too seriously. If I’m having a bad day, it will take all of my willpower to keep from going back to bed.

If it’s cold, the joint pain will increase until I can’t hold a pen, type, or do anything which requires flexibility in my hands. Bending at the knees or waist is akin to pulling teeth, and I’ll avoid it as much as possible. I’ll sit in the highest seat off the ground that I can find so that I can get up and down with more ease. I may put a soft towel in the dryer so that I can wrap it around my hands for temporary relief. I’ll want to sit and keep warm as much as possible, because when my joints are warm I am in the least pain.

If it’s hot, I’ll wish I could wear a satin nightgown or nothing at all. My skin will be on edge, as though something is crawling under every pore of my body. It is the most excruciating feeling I suffer as a result of my condition – not because it is most painful but because there is nothing I can do to relieve it. Even my teeth will hurt, and I’ll be so nauseous I’m afraid to move. It is on these days I am most likely to get a migraine – a force of pain that is increased by noise, light, movement, and smell. All I want to do is crawl under a sheet in a dark room, keeping cool and protected from abrasions.

Warm, cloudy days are when I’m most comfortable. The sun doesn’t hurt my head, the heat doesn’t bother my skin, and the cold doesn’t make my joints ache. During these days, I often only have to deal with the muscle tenderness of every day.

As I live my life, simple things become exhausting. Showering, doing chores, cleaning my room. Being stationary, in any position, for any length of time, is real work. I’m restless as a result.

Sometimes I may want to read or write. On a good day, this won’t be a problem, but I often find that it’s hard for me to concentrate for any length of time. Even when I enjoy reading a good book or working on another project, I have to take frequent breaks in order to refocus. This means that even the simplest tasks take me much longer than they would most people. Driving is incredibly stressful, because I am trying extra hard to be alert and cautious. If someone asks me a question, I may take several seconds to respond. Your question has to penetrate the almost constant fog in my brain, register, and then I have to make sense of it before I can consider my answer and respond. I may even realize I still didn’t hear you and need to ask you to repeat yourself once, twice, or even three times. This is probably much more frustrating to me than to you, because it means I’m almost constantly catching up, and I’m embarrassed by this handicap. It is next to impossible for me to concentrate on more than one person talking at a time. I find it is much easier to stay quiet in large groups than attempt to participate. This condition is called “fibro fog,” and it effects more than conversations and concentration. I daydream more than most, and even while concentrating on conversations, my mind will drift, and I’m far too easily distracted. It takes exhausting effort to focus.

The chronic pain is, well, a pain. It is more inhibiting than I like to admit, and I do my best to hide my discomfort. If I’m showing any pain at all, it’s severe enough that I am struggling to deal with it. I hate it when I have to let people shoulder things I feel I should be able to do. I want to be angry when people carry something for me or take over a task I’m doing, but I’m thankful I don’t have to worry about messing up by trying to do it alone. I want to cry when I realize I can’t twist the handle of a can opener, open a bag of chips, or take the lid off a peanut butter jar, because the muscles it takes to do these things are so tight that the simple movement makes my muscles seize up, and I drop whatever is in my hands. When I sit at the piano or organ, trying to play for church or for pleasure, I wish that I didn’t fudge so much because of the inflexibility of my fingers. It hurts to know that the pain is so inhibiting, and I hate it for the burden it puts on others.

I live with a constant prayer on my lips – that I won’t ever feel like I need to give up. No matter how severe the pain, I try to focus on my blessings. I try to think about the people who give me their full support and try to help me as best they can.

Fibromyalgia is a terrible thing, but I’m not Sarah, the girl with Fibromyalgia. I’m just Sarah, and I am not defined by the pain I suffer. I welcome your comfort, your love, your compassion. I need it, even. I will do my best to live as full a life as I can. I’m just Sarah – plain and tall – and your warm embrace is all the understanding I need.

One Minute At A Time

What do you do when you suffer? This is a question I often ask myself, because I tend to suffer a lot. Mind you, I know many people who suffer WAY more than I do; this is what I tell myself as I say: “I’m fine. I have no right to complain.” There is also the urge to just keep it all to myself, because me suffering means that others might feel a need to help me in some way. This means asking others to sacrifice for me which is something I would never ask for.

Right now, I’m dealing with the type of pain I probably hate the most: back spasms. You may know the feeling. You’re fine one minute and then next, you’re gripping the closest thing to you because it feels like several knives are stabbing into your back and twisting to bring the most acute pain possible. Some people only have lower or upper back problems. I tend to feel pain between my shoulders, below the right side of my ribcage, underneath each shoulder blade, and often between several vertebra in at least three places (I never do things halfway :)). I have waves of spasms, often lasting a minute or two, then my back relaxes for a few minutes, then it all starts again. When I first begin to feel pain, these waves will be several minutes apart. After awhile, they come close together, eventually so that one wave of pain leads into another fairly quickly. As the waves become longer and are closer together, the tension moves into my legs. At this point in the game, I am unable to walk. Talking is next to impossible, because taking a deep breath triggers a shooting pain through my back and legs, and catching a breath isn’t that easy, either. This often lasts three to six hours before the waves begin to taper off, only happening every few minutes, until I am blessed with sleep (unfortunately, I can’t sleep when the pain is going on). Needless to say, the next day, I am completely exhausted. Take pain medication, you say! For some reason, I haven’t found anything that relieves the pain. At the moment, I’m entering the middle stage.

So why tell you this? Just a little: because talking about it helps, and taking the time to type this is a welcome – though not complete – distraction, although when a wave comes, I’m unable to type. Mostly: I want to encourage you. How does that work, exactly? I read a verse in my devotions, this evening, from Psalm 119:50: “My comfort in my suffering is this: Your promise preserves my life.” Despite the fact this pain completely sucks, I have God’s promises to cling to. What are those promises? Well, He’s given me many of them. One I will share with you: that I will not always endure this type of pain. Death might be what relieves me, but I’m inclined to believe that He will deliver me a bit sooner than that. Why is that important? Well, knowing that I am not alone in my suffering, I hope to bless others while I battle through it. As much as I hate it, I have a chance to help others. I pray that people will see that although I deal with things that people my age just don’t deal with, I also have the grace of God and brothers and sisters who help me get through anything. I’m never alone. My pain is a symbol of hope to me, because I realize that, eventually, it will be gone forever, and also I learn just how much God shows me through my pain. I also hope to influence others who suffer and feel as though their pain is too much to bear. I know how much fun it is to be in pain all the time. I do my very best not to let it affect the way I treat others and live my life (admittedly, this is really hard, and I often fail). I want you to know, as someone who loves you, that I’ll be okay :). As much as I hate all this, and as much as I loathe fighting through it when I would much rather flop down (gently) and give up, I have a chance to show people how much of a crutch God isn’t. His strength is made perfect in my weakness, and I desire for others to see that. I can name people who suffer and tell you how much they rely on that strength simply by their attitudes. May my attitude towards pain always lead you to Christ and never away from Him. After all, He knows exactly how I feel, and He hasn’t given up on me yet.