Cleaning and Chronic Illness

Cleaning is something  I'm sure is not exactly something we all like to do but is considered a necessary evil. For someone like myself, cleaning can be extremely challenging and often times falls to Josh due to my various issues.

Lately I have been trying to following the FlyLady.net system of cleaning. Her philosophy is you can get anything done in 15 minute increments. She even has missions each day that she posts on her website and email lists. Right now she is doing something called Back to Basics where she sends out posts each day on a basic concept she teaches. It is a series of things you are supposed to go through and you are considered a Flybaby until you have finished these things. The thing I like most about her system is that she never tries to make anyone feel guilty but tells them to jump right in and start where they are at right now.

Some days I am more successful than others in actually completing her missions. The one thing I believe she misses though in her posts is not accounting for those with chronic illness. Example, on Monday she called the mission her "Home Blessing Hour" where you spend an hour going around and doing a basic cleaning around the house. This is on top of the mission she sends out in the various zones. She split up the house into zones and one zone gets focused on each week. The problem I have with the blessing hour is that I physically can't clean for that length of time all at once and I'm sure I'm not the only one. Because of this and other issues that pop up, I tend to have to modify what I can do during the day.

Some days I am only successful in getting laundry started which she calls rebooting the laundry and getting the dishwasher rotated. The actual mission of the day gets pushed aside as my body can't do it. This frustrates me a  tad but I also know that making a system like this work for someone with a chronic illness is part of life.  The concept of setting a timer and focusing on one task for 15 minutes or one area for 15 minutes is doable even on my hardest days. Granted most people who follow this system with do this 15 minute work multiple times throughout the day while I may only get a single 15 minute segment done the entire day.

Cleaning in baby steps takes time. My house is no where near where I need and want it to be. Unfortunately Josh has to take the brunt of the housework but I do try. My usual jobs are handling the laundry and working on the dishwasher while at least planning the meals. He may cook them but I have them at least planned out.  Lately I have been trying to slowly declutter the house. My goal this year is to spend 15 minutes each day working on decluttering an area of the house. Today I got my Jeep cleaned out so goal met. Tomorrow with the pinewood derby all day, not entirely sure anything will get done. I expect it will wipe me out making me useless the rest of the evening.  Such is life.

If you know someone with a chronic illness, please be kind and not judge too harshly on how  clean their house may be at any given time. Personally my house is cluttered and needs work which we are doing, slowly. One day at a time, 15 minutes at a time.

Until tomorrow.

Frustrated

I'm frustrated and told Josh as much in a hangout. Not with him but with my body.

This morning I woke up feeling fairly decent. I took my pain meds last night so my pain levels are at a tolerable level of 6 out of 10. Not too bad for me at all. I got up and made breakfast biscuits for the kids, filled with cheese, sausage and bacon along with getting their lunches ready for school. Also managed to unload and reload the dishwasher with minimal issues, like dropping things and took Rebel out so I was thinking today was going to be a really productive day.

After drop off, I wanted to come home and make a decent dent in the house cleaning.  Something taht really needs to get done as we have a lot of clutter.  I've been following the Flylady back to basic missions even and trying to do things in 15 minutes increments.  My body is not cooperating though in what my mind wants to get done. My body has decides it is going to feel weak and make me winded any time I am up for longer than 10 minutes at a time.  Any time I sit down, my eyes start to close. This frustrates me a great deal as I want to be productive today. It makes me feel lazy when I am crashed on the couch all day. 

Josh works hard at his job and does a great job at it.  My 'job" is the house and taking care of the kids while handling my various illnesses since I can't work outside the home.  Today I feel like I am not doing a good job when I really want to do better.  My body wants me to crash on the couch till it is time to pick up the kids instead of "working".   The smart thing to do is listen to my body and rest because if I don't, I could go into a flare, making things that much worse. I'd like to not give in just yet though and find a compromise. 

Maybe I will work on picking up things for 5 or 10 minute increments every hour instead of just resting.  Will also make sure I take a decent nap so I am able to help the kids with homework when they get home.   This process of figuring out what I should do versus what I can do is something I go through every day. Some days, like today, I get frustrated when my body forces me to slow down. On better days I can get a lot more done. It istill doesn't measure up to what most normal people would consider a lot but for me it is what I can do. 

Here's to hoping tomorrow is a better day. The only thing I can do is trust taht God has my back and that he will help my body feel better tomorrow. Until then, I do what I can. 

Until tomorrow...

Unexpected problems and success

Just realized I hadn't posted since Saturday. Oops. Well since Saturday things have been a little nuts.

Sunday we made it to church, relaxed some and then off to soccer training. Typical Sunday but busy for me. What wasn't really expected, by me at least, was the snow that started in the morning, switched to rain and then back to snow when we were at training. Definitely made me glad I wasn't driving as I hate driving in slick conditions.

Coming out of soccer the kids were saying they hoped they had a snow day on Monday. I looked at several weather apps and most of them said the heaviest snow would be done by midnight so I said don't count on it. Go figure when I got up early Monday, I glanced at the nbc4i site for school closings and noticed Columbus City schools had closed. Not 5 minutes later I get the text that Calumet was closed for the day as well. Normally I am thrilled by this due to hating to drive but not yesterday. Yesterday I was scheduled for my hour long Actemira IV infusion with a followup doc appointment afterwards. I called Josh in a panic asking what should I do thinking I would have to reschedule. Nope, he told me to bring them and have them sit in the lobby quietly and play on their Kindles till I was done. The lobby was just a short hallway from where I was so they should be fine. My doc office was fine with this as well.

As it turns out, I explained to the kids that I needed them on their best behavior and they behaved wonderfully. I didn't hear a peep out of them the entire time I was on IV. When I met with my RA doc, she and her nurse told me how great they were the entire time. The nurses were keeping an eye on them as they called patients back as well knowing I was in the infusion room. My RA doc told me that the kids were welcome any time. Granted an hour long infusion would be the max I would have them wait in the lobby by themselves but it was nice to hear how good they were from others. I was very happy with them during the entire visit and told them as much. 

Unfortunately the rest of the day did not go as smoothly. We made it home fine and the kids were decent the rest of the day so that wasn't the issue. What I didn't expect happen was getting a migraine on top of my usual side effects of severe fatigue. Thankfully the migraine hit after Josh was home and we were out running a few minor errands. The being out was good and bad but mainly good since it wasn't full blown till we got home. I was able to get everyone fed and then able to lay down on the couch some before tucking everyone in for bed. 

Acetimra is a great med and combined with my other medications, seems to be continuing to work. The best thing Actemira does is keep the swelling down in my hands so I am able to wear my wedding ring. Unfortunately it also has side effects that last 12-14 hours after infusion. Within 3 hours of infusion, I usually try and be home so when my body gives out, I can take a long nap. I'm usually just tired for the next day or so which isn't too bad since I accomodate for it. Knowing the migraine hit right after infusion this time, next month I am going to have to preemptively take Advil migraine in hopes of stopping it before it starts. Just another thing I have to plan for and adapt. Such is life. 

Until tomorrow and I do plan on posting tomorrow...

I Am....

This turned up in my Facebook feed last night and every one of these hit home for me.

I am strong yet have days when I feel physically and mentally weak.

I am resilient but wish I didn't have to be.

I try my best even when I feel my best isn't good enough.

I value my life even my life I didn't plan to have.

I am not perfect yet I strive to be even knowing only God is perfect.

I am the perfect me who has a husband and kids who love me anyway.

I never give up but do take a step back when need be.

I am empathetic to the struggles of those who suffer from chronic illnesses like myself.

I am a warrior inside and out as this is the only way I can get through the bad days.

Ready to conquer anything thrown at me as long as I remember God and my family have my back.

I am not broken but feel like I am when my body doesn't cooperate with what I want to do.

I am loving yet can be very short tempered when my joint pain gets the better of me. 

I take things one day at a time as that is the only way most of us with chronic illness can live. 

I am independent to a fault and don't like to ask for help even when I need it.

I am human looking forward to a day when we find a cure for the many of chronic illnesses in the world today.

I am a survivor continuing to adapt and thrive despite the obstacles thrown in my way. 

Until tomorrow.

Sick kids and poor eyes

The last few days has been hectic with Cynthia not feeling well.  Monday she barely ate and ran a low grade fever all day which meant no school on Tuesday. Yesterday her fever broke and she seemed to be feeling better when she went to bed. Unfortunately she woke up with a headache and sore throat again today so she stayed home again. 

Some parents would say send the child to school anyway since she isn't running a fever over 99. I'm not one of those parents. When growing up I went to school no matter what, rarely staying home, mainly when I couldn't keep anything down or had a high fever.  With both parents working, they did the best they could and I don't blame them for sending me. One of the "perks" to me being disabled is being able to stay home with the kids when they need it. 

Cynthia looked tired and refused to eat breakfast saying she wasn't hungry. Coming from a child who usually finishes what I don't eat on most meals, this was a red flag to me.  Josh and I both agree on the concept on only sending the kids if they feel well enough to pay attention in school and get something out of it. If they don't feel good or won't be able to concentrate at school because of it, it defeats the point of sending them. I would rather keep them home resting so they can get over it faster and no infect others.  I do pick up work for them from their teacher during drop off so they don't get too far behind when they are out which is what Cynthia is working on as I type this since the ibuprofen has kicked in finally. Really hoping she is feeling better tomorrow. 

On a totally different topic, one of my more "normal" chronic conditions is issues with my eyes. I have extremely bad eye sight which my opthamalogist calls severe myopia taht is corrected by strong prescription glasses. My eyesight is so bad that my script won't fit into a polycarbonate lens or even the high density lens so I've had to move to an even more specialised type of lens to correct my vision. Thankfully our vision insurance covers a large portion of it. On top of sevre myopia, I have retinitis pigmentosa which means I have some small holes in my retina which is held stable by the pigment around it.  It also has some other complications with it which I honestly ignore unless my doc brings it up.

My last yearly visit, I was told I have cataracts as well. I guess I had it the year before as well but he never mentioned it. He mentioned it to me this time because my vision dropped a fair amount from the year before and is something he will be watching closely this coming year.  Usually when I hear about someone having cataracts, I think of someone is their 60;s or older, not someone my age with a young family. If my vision drops a significant amount again this coming year, he told me the cataracts will have to be addressed. I can only assume that means possible cataracts surgery which scares me. Any surgery scares me right now thanks to my immunodefinciency which ups the risk of infection.  Only time will tell on this one. If I am honest with myself, I can already tell my vision is changing some so probably need to start mentally preparing for it. Surgery means bringing my immunologist in on things so we can minimize any complications.  

All this stuff doesn't impact my life as much as my problems with driving at night. I complained about it at my last visit and they did a glare test. What they did was covered one eye while putting a cone around the other eye and flooding the inside with a bright light. I read the letters through the small part of the cone. I did ok with my right eye after a few minutes of struggling to adjust but wasn't able to see anything with my left eye. I've never had this test done before now but wish I had as it explained a lot to me. In the past I have had trouble driving at night due to the glare of oncoming cars and street lights so the results of the glare test made sense to me.  It also validated my hestitation for driving at night.

At this point I only drive at night when I absoutely have to drive. Usually this means when I have to pick or take one of my kids somewhere and Josh isn't able to do it or coming home from an unavoidable doctor's appointment. This also means I limit any social type things on my own to daylight or at least time it to getting home before it gets completly dark. At times this can be a bit isolating, especially when it comes to wanting to go to my home church's women's cell group. The last 6 months or so I haven't gone at all due to me just not being comfortable driving among other factors depending on the week.   I'm an introvert to begin with so night vision problems doesn't exactly encourage me to go out when I am more comfortable at home. On a positive note, my vision with glasses is able to be corrected to 20/30. This allows me to live a more normal life or at least am able to pass the eye test in order to maintain my driving privileges.  We just have to adapt to my limitations when night driving is involved.

Until tomorrow....

Handicap Parking

The definition of Handicap is a circumstance that makes progress or success difficult per the Oxford dictionary. Another definition per the same dictionary is a condition that markedly restricts a person's ability to function physicall mentally, or socially. Though this definition is marked as possibly offensive.

The informal definition of invisble illness is any medical condition that is not outwardly visible to others, even health care professionals.

Either separately or together, both these defintions define who is able to park in a Handicap spot as long as they have a Blue or Red tag hanging or a designated handicap license plate.  In order to get one a person must have a doctor write a script saying they are in need of this type of parking. Red means it is a temporary handicap and as an expiration date while blue is permanent and I believe is good for 5 years.  Only the person with the disability is able to use the spot, wether they are driving or a passenger in a vehicle. If the person assigned to the handicap tag is not in the vehicle, the spot should not be used. Unfortunately many ignore this rule and will take advantage of the closer spot even if they are not the ones with the issue. It is fast becomong a pet peeve of mine.

The hard part to seeing a person in a handicap spot is knowing if they are the ones with the disability or are they just using the spot because someone in their household, not with them at the time, has one. An invisible illness is exactly that, invisible. A person may appear to be completely healthly parking in the spot yet suffer from an invisible illness like Rheumatoid Arthritis or Chronic Fatigue syndrome.  Sometimes it is hard to tell but sometimes it is very easy to see the person parking as no disability and is just using the space. It is these cases that piss me off as I consider it rude. It is even worse when a person parks in a handicap spot without any tag at all, regardless of the warnings of a steep fine.  I try and give the person the benefit of doubt when they have a legal tag hanging, try being the operative word.

I have a blue handicap placard and have had one for several years now. It was a struggle for me to finally ask for one as it meant I had to acknowledge that I have a disability. When I brought it up to my RA doc, she told me she would have writted a script for me several years before had I asked. We only use it when I am in the car and even then, it depends on tthe parking spaces. If Josh is driving, we may find a spot right next to one so won't use it or he will ask me if I need it. Unfortunately, the last several years most of the time I do so will park in one.

Parking in handicap parking can bring on a host of reactions. Thanfully they have all been nonverbal but I know of circumstances where people have been questioned and yelled at for using their placard. They have been told the spot is supposed to be for people in a wheelchair and that they don't have a "real" disability. This is ignorance on display. In my case, what people don't see is that I may be fine walking in but half way through shopping, will be extremely tired. My joints may be stiff that day or my knees may have given out from the start making walking a challenge. I have days where every step I make hurts so parking in a closer spot makes my life a little easier. Unless you know me and my situation, you don't know these issues though. When I park I get dirty looks or people who will walk slowly by just staring at me. Some will shake their heads or whisper something to the person they are walking with.

Yesterday we had a circumstance when pulling into the parking lot for our kids indoor soccer trainging related to handicap parking that set this post off. When pulling in, the two spots are a little off to the right of the main road in, right in front of the door. We had a car pull into the handicap spot, kind of turned some, in order to let his daughter out by the door. No tag was visible on the rear view mirror or on the liscense plate so we waited, backing up traffic in the process as we legitimately needed the spot. After a few minutes, his daughter finally got out and the guy turned so he could find another spot to park allowing us to pull into the handicap spot. As soon as we parked, Josh pulled the placard down as it is illegal to drive with it hanging on the rear view mirror. I was told this specfically by a police officer recently despite everyone leaving it while driving.

When Josh walked into the facility, Josh confronted the guy. His excuse was that is car wasn't turned off and that we could have still pulled into the spot. I wish I would have taken a picture of his car at the time in order to show him that there is no way we could have pulled into the spot. Josh said it was rude and inconsiderate. The guy disagreed simply saying he didn't turn his car off.  Josh was right in confronting the guy. Unfortunately this guy believes what too many people believe in regards to the spots. To these people it is ok to pull into a handicap spot for a few minutes as long as you don't turn your vehicle off or are not staying long. It is not ok and I consider it very rude using the spots this way, no matter how much of a rush or how busy things are. People, like myself, need these spots open to use.  It is a need not something we wished would happen.

With this specific training facility, usually only two of us use these two spots available. Yesterday we saw another valid car we didn't recignize in the other spot. Knowing that a parent in a wheelchair usually used taht spot, Josh told the owner of the facility that if the guy pulled up and needed the spot to let him know. He could always move the truck to a different spot so the guy in the wheelchair could have our spot and could come and pick me up by the door. This is showing respect to someone else since we had other options available at the time.

No one with a disability, silent or otherwise, wished for a disability just so they could have the perk of parking in a closer spot compared to others. Most in fact would give up their tag in a heartbeat if it meant not having to fight various illnesses or impairments every day of their lives. Unfortunately too many people don't see our side of things and think we are lucky. I do consider myself lucky that I am surrounded by a loving family and supportive husband but lucky to qualify for a blue handicap tag, yeah not so much.

In parting, if you don't have a blue or red handicap tag don't use the handicap spots unless someone with you at the time has one assigned to them.  Until tomorrow.

Chronic Illlness and raising a family

It may seem obvious but chronic illness affects more than just the person sick.  It impacts the entire family in various ways forcing everyone to adapt. I've found that many on the outside of things don't see this and make judgements, sometime silent, sometimes not.

Josh and I have been together for almost 15 years now and will be married 12 years this coming July. Over the past 15 years, he has been there with me through 9 joint surgeries out of my 11 that I have had thus far. My kids have been around for 8 of them but thankfully don't remember much of most of them as they were too young.  They have also been around for 4 other surgeries and countless procedures all of which has impacted them in some way.

When Josh and I first started dating my body was in much better shape. I remember the two of us going for 20 mile bike rides without a second thought. Sure I would be tired and achy but not to the extent I am now. The only thing back then that was a constant battle was my right shoulder semi dislocating, which he would put back in socket, and constant pain above my right eye. Otherwise we lived a fairly active life. In 2006 I completed my first Sprint distance triathlon and was in decent shape. What we didn't know at the time was my RA was likely in remission or not active at the time allowing me to do these things.  Since the completion of my 2nd Sprint distance triathlon, we have watched my body slowly get worse.

I have gone from completing a triathlon to barely walking at times. I get winded just going from my couch to the kitchen on bad days. My kids don't know a time when I wasn't dealing with an illness. When they were younger, I felt bad that I physically couldn't take them everywhere and do all the things normal moms do. Instead we spent a lot of time playing at home. Often times when they would nap, so would I. They know my limitations and at this point can usually tell when I am wearing down and need to rest. As much as I try not to get cranky with them when I am not feeling great, I don't always succeed which usually results in me apologizing to them.

Now that they are getting older, they are starting to understand even more and for them, me laying on the couch after a busy day is normal. They don't think twice when we are all home from a busy few hours and I fall asleep on the couch. They say mommy is sleeping and go about playing. Because of my RA & CVID, I can't do everything that other moms do but I do what I can. In the summer we do go for walks in the woods, it is just planned so I know to rest up before we go and have time to rest afterwards. Biking is the easiest thing for my joints so we do a lot of that as well as a family. If I am in a flare on a day off, we may not go to a playdate or a park. Instead we stay home and they play outside.

Knowing I can't do everything I see other more active moms doing, I try and do little things that make my kids happy like playing the Wii or reading books. With all 3 in school, in the morning if it is cold out, instead of dropping them off to wait on the porch before the bell, I often times go inside the lobby with them so they don't have to stand in the cold.  This makes some of the kids classmates mad as they see them walking into the school when they are not allowed.  It is something little I can do for them that makes them smile. Joseph's asthma is tipped off by cold air so waiting inside with them also helps prevent any possible issues.  I'll bring things to them if I am in the area but not always. If they forget a backpack, they have 1 freebie they can use for the school year. They know it and have thought hard if they really need it when left at home the few times this year.

Living with a chronically ill family member can be hard but I've been told it also is making my kids more compassionate. All three of my kids are usually quick to help not only me but anyone who needs it. When my hands are too weak to open stuff or I don't have the motor control, Cynthia will step in and be my hands.  It has made them more independant as well. They are already learning how to do the laundry, unload and reload the dishwasher and make some basic meals.  Cynthia knew I was starting to get tired this morning after making muffins for them so she made breakfast for me. It was simply frozen waffles, some crackers and a muffin taht had cooled but it was very sweet.

I'm wiped out still from being busy yesterday so already struggling with getting stuff done. Josh is working till mid afternoon so the kids and I will have a low key kind of day. My body needs these kinds of days, especially with spring soccer starting in a few months.

Until tomorrow..