Yes, ladies and gentlemen, 2 blogs in 2 days. But I couldn't resist posting this tonight. Mostly because even though the realization that hit me tonight will still exist somewhere in my fatigued, fogged, and medically fogged brain, the importance of it (or the circumstances around it) might get lost somewhere by then. Gotta love pain, fatigue, and Topamax. I knew what I was getting myself into when I was put back on Topamax and I'm very grateful that I started titrating up to my target dose not only while I was on medical leave, but while I have plenty of time before the fall semester starts so that the side effects ease. You see, the biggest side effect is memory and cognitive impairment. I forget what I'm saying mid-sentence, forget why I was going to call or text someone in the few seconds it takes to unlock my phone, forget if I took my pills (except my morning and evening pills, since they're taken at the same time every morning/evening with exception to 1 in the morning depending on whether or not I have to drive). It's the ones I take "as needed" or the 4 times a day pills. I've actually had to start making a note so that I don't overdose by accident until I've reached my target dose and adjusted to in, in which the side effects go away.
And already I've gotten off topic. Since starting on 2 new medications--one is an anti-rheumatic drug that usually takes anywhere from 4-6 weeks to notice a difference, but up to 6 months to see the full effect, while the other is a very powerful pain medication taken twice a day. For the first few days on the pain medication I had something I hadn't seen in several years---absolutely no pain whatsoever. I'm not entirely sure it was because the medication was actually working, or if it just threw me so far off the planet (but not sleepy or drowsy in any way) that I just didn't care about the pain. Either way, I wasn't going to complain. Then starting around Good Friday, the pain not only started to increase, it never improved. It continued to get worse. It was so bad, in fact, that I couldn't even go to Easter dinner with my family. And it's still continued to worsen over the course of the week. My joints are still pretty swollen and very painful, but I've noticed that my hands are slowly starting to uncurl themselves (most likely from the anti-rheumatic drug). Then today a friend of mine who also deals with painful chronic illness posted something I've found myself saying more times than I can count: "I'm sick and tired of being sick and tired." Then that little light bulb went off as we were talking.
It's easy to judge someone who looks normal, but doesn't work, cancels plans at the last minute, doesn't work, and spends most of their time in bed. It's easy to say "it's just mind over matter, so think positive and you'll start feeling better," "but you don't look sick, so you must be just lazy," "try getting up and getting some exercise," and anything/everything along those lines. My mother even made some kind of comment this evening about how much time I've been spending in bed lately. Like I enjoy this or something. That was what flipped the switch to even get the electricity running to the lightbulb before it finally turned on.
Everyone who is living with a chronic illness (even the most painful ones) deals with it differently. Yes, attitude does pay at least a small role in it. Having a positive attitude is definitely more productive than always walking around with a negative one. Except it's not always simple to keep a positive attitude. Over the last few years, I admit I've become a bit cynical for a lot of reasons, including my health. I also try to see the upside or silver lining in everything, no matter how small and seemingly meaningless it may be. Finding that tiny sliver is still better than finding nothing at all. Naturally that's excessively difficult after you've spent almost a week in incredible pain, hardly any relief, and all it does seems to get worse. It becomes difficult to get and stay comfortable (even with a Tempur-Pedic mattress), sleeping is hit or miss, nothing seems to help it, and your mood just continues to go downhill. Before you realize it, you find yourself more ill tempered than normal, less tolerant, more cynical, and bitchy is a bit of an understatement. After years of dealing with this, I've gotten better at catching this before things really blow up. I know this isn't the real me. It's a combination of fatigue, unrelenting pain, a side effect of some pain medications, and the stress that always comes along with it. So I try to isolate myself in my room to minimize the outbursts, since most of the time, the targets of my anger really don't deserve it. At least not at the level I dish out.
Everyone deals with this in their own way. Aside from my as yet undiagnosed illness (which may or may not be a flare up of, or just the illness itself), the weather has been a be wonky lately. I've mentioned in previous blogs how the weather affects my pain levels. The same holds true for my mother, except she deals with her pain a little bit different than I do. I try to rest, but get small things done when I get little bursts of energy here and there, but always conscious that I don't overdo it and pay for it knowing I'm already in pain, so if I overdo it, it's only going to make the pain worse. My mother spent several years on almost a dozen blood pressure medications to bring her dangerously high blood pressure (which caused her kidneys to fail) under control. At the time, she wasn't on dialysis, but the medication alone left her bedridden 99% of the time because the side effects made her incredibly dizzy and weak. Doing things we all take for granted like being able to get up and go to the bathroom or take a shower took incredible amounts of energy from her, not to mention having to use furniture and walls to help keep her from falling over. When she did start dialysis, the first few months made it that much worse. Now she's only on 2 or 3 bp meds, but at very low doses and will most likely be taken off those by either the end of this year or next since the dialysis is causing just the opposite problem--her bp is dropping dangerously low. So on days when she has dialysis, it's not uncommon that very little gets done. The other 4 days, however, regardless of how bad the pain she's suffering, she pushes herself. She lost years of her life confined to her bed as the result of being sick and dealing with the side effects of medication. So she just pushes through the excruciating pain to accomplish what she set out to do that day, regardless of the effects of her efforts. In many ways, I can't say I blame her. Except during those high pain days, by the time late afternoon/early evening come around, she's about to rip the head off or beat the hell out of the next thing that pisses her off. (Kind of like the way I feel after spending days of dealing with pain). But that's just the way she deals with it. Sucking up the pain and getting angry as it gets worse because she pushed herself too far in her mind is still far better than the days and nights she spent either in bed or on the couch barely able to do anything for herself. And as painful and hurtful as some of the things she says and does can be, I can't help but be proud at her at the same time. Life didn't go according to the way she planned it, but it's her stubbornness that keeps her going and very little stands in her way most of the time now.
So before you go off and judge someone by the way they look or compare them to someone else who has the same or similar illness, keep this in mind: not only are there varying degrees of these illnesses, there are also varying degrees as to how those who have invisible and chronic diseases deal with them. Every one of us is different and so are our reactions. For the most part, we do what we feel is best for ourselves, whether it's mentally, emotionally, or physically.
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