Currently I feel like I was hit by a bus. This particular bus waits until I actually have fun plans on a weekend and then comes out of nowhere and BAM! Once it runs me over, I'm pretty sure it backs up and does it a couple more times for good measure.
I have a wonderfully supportive family and great group of friends. I'm very thankful for that. My kids are old enough now that they are starting to understand a little more and I can speak candidly about why I'm sick so often. I'm also very fortunate to be able to work from home every day. I work in a fairly stressful profession and I'm the sole provider for my family of five, so that takes its toll on my body, but not having a commute is a blessing. My husband stays at home with the kids and has a sports card business. As dramatic as it sounds, I honestly do not know what I would do without him. He was sent by God, that much I'm sure.
I am a very positive person and I don't like to be fussed over most of the time. There are many people much worse off than me and I'm well aware of that. Still, the most challenging thing of being sick so often is trying to keep these illnesses from completely taking over my identity. Most of the time I can manage this pretty well but during really bad days or flares, it is a struggle. When I'm really sick, I lose most of my ability to be creative. I have been able to create a couple of cartoons on my laptop during some recent flares though. It's been therapeutic to personify Fibro and to lighten up when I'm feeling so poorly.
My life has completely changed as a result of having chronic illnesses. I have to take a lot of medicines. I have to see doctors regularly. The biggest change though is having to think about, literally, everything I do. If you don't have a chronic illness, that just sounds like something everyone has to do but it's much more than that. I can't call in sick to life on a regular basis. There are a lot of days that I have to take it hour by hour, minute by minute. For example, on a day where I feel really badly - terrible exhaustion, pain coursing through my body, terrible nausea, dizziness, headaches, chest pains, etc. - I may not have the luxury to stay in bed that day (no matter how much my body is begging me to do so). I have to work, I have to get kids ready for school, I have to be there for my family...I can't just phone it in because I don't know how long this "bad day" will last. Will I feel a little better the next day or will this be one of those flares that lasts for weeks? The thing with an illness like this is, even with rest, you don't feel better. So let's say I have a bad day, here's an example of what I mean about thinking about every task that day.
1. Wake up -- sounds easy enough. However, my body is very stiff in the morning and usually my joints and my neck are hurting a lot. I don't wake up refreshed so I'm usually exhausted and nauseous upon waking. This is when I have that fight in my head. Everyone has had this fight when they have been sick at some point.
2. Moving -- I know, I know, that's dramatic, but I have to think it through because it requires energy that I might not have and I have to move slow. If I just jumped up out of bed, I could very likely get so dizzy that I could faint or I could just put myself in a lot of pain.
3. Shower -- if it's a particularly bad day, I might forego the shower so that I have enough energy to get the kids ready for school, make some coffee, and have a little time to rest before work. This is one perk of working from home. If I do that, then I will try to shower at lunch time or in the evening. Ah hell, sometimes it's the next morning. I do have good hygiene though - promise.
4. Get dressed. This requires energy and, what I wear depends on what hurts or how stiff my body is. If I'm having a pretty good day, I will attempt cuteness and throw on some jeans and a cute top. If it's a semi-bad day, then it will probably be some comfy pants and a t-shirt. On a terrible day, I still try to change out of my PJs but it may have to be a really stretchy shirt with a wide collar. This is because I may be in too much pain to reach up over my head for very long so I need to be able to wrangle my way into it as easily as possible.
5. Take pills - easy enough provided I drink enough water. I currently have an awesome side effect from a new medication that is causing a loud ringing in my ear and has reduced my hearing. Yay me.
7. Kids/Dogs/Sign School Stuff/Breakfasts/Lunches/Whirlwind -- on bad days, I just have to bark orders out from the recliner. I'm not sure why the morning routine seems to be a surprise to everyone each morning. That's why it's called a ROUTINE. The routine here is the kids having the attention spans of gnats and then acting surprised that I expect them to do the same things they did the morning before and in a similar amount of time. But I digress.
8. Rest and mentally prepare for work. This is an essential step on particularly bad days.
9. Walk to my office and start the work day. Like most normal people, the majority of my energy is spent here. Unlike normal people, the majority of my energy is *literally* spent here. On bad days, I may have to leave my office at 5:00 and go to bed. If the older kids have practices, my husband may need to take them and then I have to lie down on the couch so I can spend time with my youngest. I hate that I don't have more to give after work but I take some peace in knowing that I'm providing for my family and so that's a good way for my energy to be spent on each day.
10. Make dinner, take kids to sports practice, bedtime routines, some sort of chore (let's say put laundry away), or do something fun. On a good day, I have to make a choice here because I can't do everything. These are pretty minor things to a healthy person but think about when you had a really bad case of the flu or even, when you were recovering from a bad case of the flu, how big did these "minor" things suddenly feel to you? On a really bad day, I may be only able to pick one thing, if that. Again, my husband should run for sainthood because he is quick to pick up the slack on my really bad days. All other days, I will muster everything I have to get through as many responsibilities as possible. I don't want everything to fall onto my husband on a regular basis. Some days it's essential for my choice to be 'do something fun' and let the rest slide. A person could go crazy otherwise.
To really help you understand how crucial each decision is every day, there is a wonderful essay called "The Spoon Theory". It was written by a lady who has Lupus but was written to explain living with any chronic illness. It explains things better than anything I've read so far. In our household, we often refer to spoons now. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Planning is key when you're chronically ill but you also have to accept that plans have to be broken sometimes too. I hate breaking plans but I'm learning that sometimes I have to do it and I'm slowly starting to ease the guilt I feel about it. Fibro is a very unpredictable illness. Sure, if I overdo it one day I expect to feel badly the next day, but sometimes, I'll have a bad day (or week) out of nowhere. I try to ration my energy for days leading up to big plans.
For instance, my husband and I have tickets to a football game that we've had for months and this game means a great deal to him. I realize that this game is going to take a lot out of me due to the amount of walking we'll have to do, stairs at the stadium, sitting in a hard chair for hours, and just being around a lot of people can be draining. I recognize this so I need to prepare. I rest a little extra in the days leading up to the game. The day before the game, I do very little to try and conserve my energy. Then, when we get home from the game, I do very little the rest of that evening so I can rest before the work week starts again. Sometimes this approach is very helpful and, while I know I may feel ill for a few days after the event, it will be worth it. Sounds easy enough, right? Well, this particular plan of attack is completely blown out of the water when my symptoms all suddenly and severely flare up for unknown reasons. Two days before the game, I'm suddenly hit by that proverbial bus again. I rest, I try to sleep more, but I'm so sick that I have to call in sick to work (which I typically try to avoid at all costs). The football game is the next day and I struggle to sit in a recliner rather than just stay in bed. I have no idea if I'll feel up to leaving the house, much less going to a game in the next 24 hours. These are the plan changers that I struggle most to accept. I have to try and accept that I may not get to go to this game that we've been looking forward to for months. So my new plan is to try not to stress over it, keep resting and hoping that 24 hours will bring the energy I need, and I have to accept that it may not happen. The other part of my plan is to make sure my husband doesn't miss out because of me. I let him know that I want him to go with or without me - whether he goes alone, with a friend, a family member, whatever. I am completely sincere in that I want him to enjoy himself even if I can't. He is too important and too wonderful to have to miss something that means so much to him because of my illness.
There is also a small amount of panic when a plan comes up that I know will be tough to manage. Because I save so much of my energy to be able to provide for my family, my free time usually needs to be low key. Probably one of my biggest struggles in attempting to keep my illnesses from taking over my identity is avoiding really living my life because I have to save my energy for my responsibilities. I don't want it to be like that at all. I want to live and not just exist. I'm constantly working with my doctors to find a treatment plan that is going to help me best manage my symptoms and get back to living my life again. There is no cure for any of my illnesses so it's all trial and error. In the meantime, it's imperative that I save my energy for providing for my family and being the best wife and mother I can be with what little energy I have. I'll also keep squeezing in some creating while I am at it.
I am one happy lady in that I am married to a man I adore, I have 3 beautiful, healthy children, a wonderful family, and great friends. So I have some difficulties in my day to day life, who doesn't? I am on a quest to live the best life I can live and to reach my dreams. I'll get there, illness and all. It might take me a little longer but I'll get there.
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