Wednesday, September 16, 2015

Making Life Easier When You Live With Chronic Illness

We all know life can be hard at times but when you live with a chronic illness it's hard most of the time. Therefore you must find ways to make life easier. A friend sent me a message the other day and asked how I get through Christmas which in turn made me think of all the other ways I must break my life down into manageable parts in order to get everything done. Who am I kidding things never get done. The first thing I have to say is that I am extremely fortunate I do not have to work. I cannot even imagine keeping everything up if I had to leave the house everyday and use the little amount of energy I am afforded by having to do either a physical or mental job. I never take that blessing for granted, ever. That being said there are still days I long to be in the world but it takes one outing to slap me back into my reality of pacing myself. So here we go these are some of the things that work for me. I think? I should say these are some of the things that help me.

It only seems fitting I start with Christmas:
I always try to keep Christmas dinner simple. Of course I would go straight for the food who cares about all the other stuff. Seriously though, one year we had Jimmy Johns subs. Last year I made a huge pot of spaghetti and meatballs a few days before. I always try not to plan anything the month of Decemeber so I can conserve my energy for my immediate family on Christmas Eve and Christmas Day. They are my world so they come first. We usually have a few favorite appetizers and of course wings with our easy meal. The past few years I have tried to keep gift giving as simple as possible. Giving the kids cash has helped immensely. Who doesn't love spending their own money and buying what they want instead of some lame gifts I pick out. Stuff has never been that important to me so obviously I am a terrible gift giver. The grandkids are the exceptions. We do buy them stuff but always try to keep it somewhat educational. Another thing I do is as soon as I/we buy a gift it gets wrapped. I do not let it pile up so I have to wrap a ton of stuff all at once. I get anxiety just thinking about that. I really don't enjoy Christmas at all. While other people are all jolly and nice to each other I am a Scrooge waiting for Decemeber 26 to arrive. I enjoy the reason for the season but I think it has gotten so out of hand with people thinking they have to buy all these expensive gifts to show their love. Yes, I'm weird but I'm okay with that. I also use online shopping as much as possible heck I do that all year round. It's wonderful. I try to keep my regular sleep schedule and try not to stress to much. It turns out how it turns out anyways.

Cleaning the house:
What is that? I always say,"You mean you're suppose to clean your house?" Ok that's not totally true I do keep the bathrooms clean and vacuum and mop once a week but I don't have a cleaning day. I pick and choose little jobs at a time. Dusting might not happen often but it happens. Baseboards are gross and need to be done someday but who cares? Plus 
what if I die tomorrow? I'm sure no ones going to say, "My gosh her baseboards were discussing." You have to accept what you can and can't do and be okay with it. I have! Who cares.

The bed:
I wash my sheets regularly I'll leave it at that. Once a week? Sometimes. For sure every other week. Hey, we go to bed clean every night so they can't get that dirty can they? Beside changing and washing all the bedding is a nightmare. If I'm doing the bed that's what I'm doing that day, the bed. It is by far one of the hardest jobs for me. There are times I have to lay on the bed to rest in between putting the sheets and blankets back on. I know that sounds crazy. Crazy but my reality. 
Make the bed everyday? What's that? Are you kidding me? Why on earth would I make my bed, for me and Rich to see? Neither one of us cares at all if our bed is made. On the rare occasion that I do make it, because people are coming over, it's not like Rich says, "Oh honey thanks for making the bed it looks devine." So screw that. In fact when people do come over I whine to him and say, "Crap that means I have to make the bed." He always tells me, "Don't make it. Just keep the door shut." And you wonder why I love that man! 

Speaking of the bed... But really, Just Do It! I know pain can be an issue but there's always a way to work around that. Nurture your relationship and treasure what you have together. Enough said, that's as much as your getting. Haha

I leave stuff out basically scattered all over the house. In the bathroom I have a huge basket I keep everything in that I use each day. Why put it away one day when I know I'm going to need it tomorrow. It takes energy to search for things. Most of the things I use each day are out in the kitchen too. It's not clutter it's reality. I go for easy. Why not? I live here. I keep the things I use most in the cabinets on lower shelves and at arms length. It just makes life easier that way. I get cold easily so at any given time there are sweatshirts on my kitchen chairs and in my car. Leave things accessible to your needs. If someone drops over who cares. Put your needs first.

Ask for help:
I hate this one. Being a type A person it is extremely hard for me to ask for help. I only ask Rich for help when I am forced to do so and when I do I always refer to it as "We" need to do this, that way I still feeling like I am doing it and in control. I'm pretty sure he cringes when he hears, "Hon WE need to do this." I always put the emphasis on the WE and chuckle out loud. He knows why. Of course he never shows it. Ask your people to help you. Admit when you need help and ask. It makes life so much easier instead of beating yourself up for not being able to do it alone. I know it's hard. Being ill takes away enough independence and asking for help and admitting you need it isn't easy but it's ok to do so.

Getting ready to go away.
Plan! That's a all I can say. Only you know the amount of energy you have when you have to be somewhere. For me taking a shower and then getting ready is exhausting. I always take a bath before I go to bed at night. Always. If we have plans the next day that means all I have to do is hair, make up, and get dressed. Which we all know takes a lot of energy out of us chronics. By the time you get to where you are going that evening you are already tired. I break it up into pieces. I will do my hair earlier in the day so that is done. Then a few hours before we go I get dressed. Then I rest for an hour or so and do my make up. I always mentally pick out what I am going to wear the night before, pick it out, put it in the front of the closet, so when I get up that decision is made. Baby steps if you will and again whatever works. On a normal day home usually get dressed right away. I lay my clothes out the night before so I don't have to fumble through to try and find something to wear. After my tea I do my hair and slap on a little makeup. I figure if I'm staying home for the day why do I need to get all dressed up. It's all about comfort. I love my stretchy pants and a tshirt or sweatshirt. 

Dinner and snacks:
Cooking can take a lot of time and can be very exhausting. Simple is my motto. I try to always make enough of what we are eating so we can eat it two nights in a row. I love making large pots of soup because we can get three nights out of that. Subway is always nice to do on occasion. Rich will pick it up on his way home from work and dinner is done. I'm fortunate he isn't a picky eater and if there is the occasion I don't cook he could care less. He will pop a turkey burger or something in the mic and be happy. Snacks are always grab and go. Bananas, yogurt, cheese stix's, etc. anything simple. I don't buy junk food at all except when the grandkids come. I like cup a soup too that makes a low cal snack and you feel like you ate something. You adjust to your likes and dislikes as long as it doesn't consume your energy it's only a snack after all. Try to keep breakfast and lunch simple too. I like a sandwich or something else that is easy to make. 

Having company:
This can be tricky. We don't do it very often because it is a huge energy zapper. When we do have company it takes the wind out of my sails. I have learned to never make plans the day after company comes because I know I will need it to recover, sometimes two or three days depending on the get together. Ask everyone to bring something people love to be told what to bring. This is hard for me. I have always been a do all person but I am learning to ask people to bring a dish when they come and I must admit I'm beginning to like it. We always grill when people come over because Rich mans the grill and it  is one less thing for me. I always prepare a few days before, sometimes the week before,  getting all the dishes and other stuff ready and try not to cram everything into one day. Spacing things out helps conserve the energy you need to talk to everyone who comes over. We do everything early because we like people to leave early, at least I do. If people stay that means my sleep schedule gets totally screwed up which in turn causes more issues for me. I figure if I'm entertaining I can make the rules. Early it is.

Keep a good sleep schedule:
I learned this from a sweet friend Lisa who has rheumatoid arthritis and myasthenia gravis two diplitating diseases. She always said she keeps a sleep schedule and tells everyone not to call her after 8:00 pm. She knows how important sleep is for her and she takes it very seriously. This is one of the best tips I have ever heard from anyone because it is so true. I do my best to get in bed early each night. After hearing Lisa talk about sleep I began to be aware of what impact sleep had on me. It is very important so be aware and make time for it. Make your bed as comfortable as possible. Use pillows if you need to. Prop up whatever needs to be propped up. Do whatever it takes to make sleep comfortable because it will help your day to be better. If you need a nap during the day then take it. This is hard for me because I've never been a nap person but there are days I need to shut my eyes for a minute and just rest. I am learning it is okay to do. 

Learn to say No:
This is a hard one to learn but once you start to do it it gets easier. You don't need to explain anything to anyone. When asked something just say that's not going to work for me and move on. It's for your health so just do it. NO! If people don't understand they are not your friends and you will learn to be okay with that too. 

Let things pile up:
Who cares? There are some nights we go to be with dishes in the sink and guess what? We wake up the next day and they are still there. It's crazy they stay right there until the next morning when I have the energy to do them. It doesn't happen often but it happens. The same goes with laundry. I'm usually really good about keeping up on my laundry, washing it and putting it in the dryer but then it stops. It never fails every time I open the dryer there they are the dreaded clothes I left in there the day before. No harm done. It's just clean clothes so who cares on that one too. It's funny how everything eventually has a way of getting put away somehow someway. 

This is another, just do it. I know it isn't easy believe me I've heard all the excuses and they have come from me. The important thing is to find what works for you and stick to it. I believe we beat ourselves up over and over when it come to exercise. If we can't do thirty minutes at a time, like we are told to believe, we push exercise under the rug not realizing even a ten minute walk is good for us. Start slow and build yourself up. If you start to walk walk for five minutes and add one minute to that the next day, the next day another minute, and so on. You will figure out your number and what you can handle. Listen to your body especially after the walk and if it's too much scale back for a few days. Moving and doing anything is better than sitting. For those of us with arthritis sitting only makes the pain worse so don't sit for long spans of time even moving around the house is a form of exercise. I believe the world makes us believe we have to run on a treadmill and kill ourselves doing it but for some of this doing so is not possible. Once again do the best you can and don't beat yourself up. Plan for exercise just as you do for everything else in life. Exercise for the chronically ill is not refreshing like it is for those without chronic illness. I have found the pool is the easiest for me it is so much easier on my body than any other form of exercise. On the days I don't go to the pool I walk sometimes only fifteen minutes but I do it. There are days I might walk ten to fifteen minutes in the morning and then another fifteen to twenty minutes at night with Rich it just depends on the day. Don't forget one day at a time and do the best you can. Block out the worlds messages on one size fits all for exercise because it doesn't. 

I'm sure there are many things that could be added to this list. Your list might look a lot different than mine and that's okay. My main point is don't be so hard on yourself because I'm sure I'm doing enough of that for both of us. Hang in there and push on!

God Bless!


Blessings Through it All

Yesterday my head was running my life. In fact the past few weeks I could feel my anxiety mounting slowly, so slowly that I really didn't notice it was rising until yesterday. I woke up yesterday so anxious that all I could see was the negative that was happening in my life. I forgot to remember how blessed I really am. 
I realized the anxiety started when I received a phone call from my new Rheumatologist a few weeks ago. Don't get me wrong when I hung up the phone I was glad I got the call but as soon as the gladness came it disappeared. Why? The appointment is three months away. I'm sure most people think what's the big deal? I would probably think the same thing If I was reading this and it was someone else writing. Problem is it isn't someone else it is me. We all know nothing is a big deal if it isn't happening to us. Which is sad to me but that is the way life is. Before when I was stabilized on my medications I was seeing my Rheumatologist every three months and when I continued on the same level of symptom control it was bumped up to six months. That first time my doc told me we could wait six months for the next appointment felt like Christmas for me. Like I was handed the best gift ever. Now waiting three months for an appointment  seems like an eternity. I was seeing my last new Rheumetologist every month trying to get stabilized on this new medication which hasn't been easy at all. I continue to struggle with side effects that make it hard for me to leave the house. I wake up everyday telling myself today will be the day I feel better only to realize that maybe today isn't the day. All I want is a half way normal life and wonder if that is too much to ask? The stress of a new doctor for me is horrifying. I just lost my fairly new Rheumetologist and we clicked well. I don't know what else to say. I don't have a lot of faith in too many doctors. I have been treated badly by quite a few so meeting a new doctor and getting him on board with all I deal with is nothing less than sheer terror. How crazy does that sound? I mean really it's just a doctor appointment. True but for me it is like preparing for a life changing exam. I have to prepare for days. There is so much to write down and remember to tell the new doc that it becomes overwhelming. I put it off as long as I can because in some odd sort of way if I put it off it will all go away. It doesn't and I realize this is such a silly way to think. It has to be some sort of coping mechanism or just the way my brain wraps itself around all of this. On the blessed side I have an appointment! 

My anxiety definelty got the best of me yesterday but today I thought to myself, SHUT UP!  Every time an anxious thought comes to my mind I replace it with a good thought or a blessing in disguise. I went for a walk this morning and enjoyed nature. I played with my puppies and that always makes everything better. I'm going to do something's around the house and I am thankful for the little bit of energy I am blessed with today to do that. I'm looking forward to a weekend with Rich to get ready for deer hunting season and playing together in the woods. I realize with all my illness anxiety there is so much more goodness I am blessed with. If this is as good as it gets for me I am happy with it. Could it be better? Of course. I'm sure no matter how blessed someone is they can always say or think things could be better. It's the way we think as human beings. Life isn't perfect for anyone whether they deal with a chronic illness or not. In the end it is all in the way we handle it. Good days. Bad days. Days somewhere in the middle. We take what we get and do the best we can. We are blessed!

God Bless!


Tuesday, September 8, 2015

That's the Way it Is

Celine Dion has a song called, That's The Way It Is. There are so many times that chorus runs through my head almost like there is a tape player running over and over in my mind. Today was another one of those days I heard the tape. To be truthful that choirs has run through my head many times over the past three weeks and two day. Yes, I do have a mental time calendar that keeps track of the bad days when they hit. Funny how that happens when you struggle with being ill. My motto has been for years, it is what it is, and that could quite possibly be where the Celine Dion replay came into play but I'm not sure. Over the past three weeks I have had some okay days scattered in with the not so good and I tried to take advantage of them. The weird part is that when I don't feel so great if I am home I am at some sort of peace. I know if I get sick I can sit and relax and that brings some odd sort of comfort to me. It's usually not until I leave the house that I realize how awful a day can be. I'm sure if that sounds really odd but for me it is real. Last night it seemed like all of the sudden a switch got turned on and I became weak and tired. I woke up this morning feeling the same way I felt when I went to bed but it couldn't be so because I had a plan for today. I was going to get back to my swimming class and get back to "my normal." I forced myself physically along with the self talk to get ready. I got dressed, did my hair and makeup, put on my bathing suit, packed my bag, grabbed my small grocery list, and headed out the door. All the time using my self talk, "You can do this." I hit the road running with my Cheap Trick CD in the CD player. Telling myself once again, "You can do this!" I had the plan, stop at the store first because I knew I would be weaker after class. Feeling weak I changed my plan, go to swim and if there is enough energy left stop at the store. You see, that's how it is for us chronic's we are forced to change our plans on a dime. I got a few more miles down the road and began the war in my head, asking myself if I really thought I could handle an hour of swimming as weak as I am today. I knew the answer before I even left the house this morning but it was like I had to prove something to myself for the bazillionth time.  Back and forth mind games forced me to admit the swimming wasn't happening for today but there is always Thrusday. I'll go Thursday! I had already passed the store but when I made the decision swimming wasn't happening today I pulled in a parking lot and swung the car around. A sad moment for me but also a real moment for me because that's the way it is. I got back on the road felling okay with my decision as I knew if I over did it I would pay even more dearly. I also felt I needed to make the store stop. I really need groceries but the few things I ended up getting would have to do for today because that's the way it is. I cut up tomatoes and peppers yesterday to make more salsa and here I am home doing that, so for me this is a successful day! I am accomplishing something. The ability to stop and rest as needed being in the comfort of my own home helps tons. I don't think the swimming group would understand if after fifteen or twenty minutes I got out and told them I needed a break. The last time I went I ended up leaving twenty minutes early and that felt odd especially since everyone in the group is at least twenty years older than me. Try to deal with shit like that in your head. I continue to tell myself the important thing was I went for forty minutes.  Focus on the positives!  Who cares if I missed twenty I made it there.
It's hard when you are ill because the production to just get there and get home takes a lot of energy but that's the way it is. Mentally trying to accept that's the way it is can be a challenge in itself. I personally try my hardest to always look at what I did do instead of what I couldn't do. it's not easy but the my cheerleader and the one who understands it most, Rich, will boost me up and say things like, "Wow you made more salsa that's awesome!" He always help me to realize I am way to hard on myself when I expect too much by trying to keep up with everyone else my age. He helps me realize and understand it isn't possible and that's the way it is. 

I sure do hope that no matter what you are dealing with in your life you are able to say to yourself, That's the way it is!" In the end it really is true. We do the best we can with what we have been given or maybe with what we have been not given. A crappy body that attacks us every minute? Bring it on! We have to believe we are not alone. We have to believe what we are each dealing with is real and it is our own personal fight no matter what the world might say. I really despise when someone says, "We have to remember someone else always has it worse off." It makes me feel like what I deal with is trivial, it isn't. It's my fight and it sucks and it's not easy. I believe that phrase makes them feel better because it sure doesn't make me feel better. So here's to all my chronic illness sufferers and those who love and support us, "Thats the way it is," and we will keep fighting no matter what!

God Bless!


Tuesday, September 1, 2015


I woke up this morning and as I laid there for my usual half hour contemplating getting up I thought about the past two and a half weeks and I became frustrated again. I hate to keep beating this to death but it is what it is. Hold on for a little more babble it gets a little better. The voices in my head argued as I laid there. The number one argument was about the medication I'm on and the very unwanted side effects that are affecting everything I do lately. I laid there willing myself to get up while fighting the urge to go back to sleep. I fought with myself about just stopping this stupid medication. I mean what's the point anyway without a Rheumatologist? It's so easy for me to go there, that place of giving up. I realize I am a quitter. When things don't go my way I want to throw in the towel and forget it all. I'm learning I have been a quitter all my life. A good self realization for me. The best part of being chronically ill is you learn so many things about yourself you would never learn if you were actually living s normal life. Wait, is that good or bad? 

I remember when I was in elementary school and I use to love to clean the chalkboards. I would beg my teachers to let me clean them with water because truthfully I hated seeing the marks that were left after the chalk was erased with the eraser. I loved how they looked after the teacher told me yes but, I also dreaded the fact that she would pick up the chalk and the whole process would startover again. The perfectionist in me I guess. There are many days I wish I had a huge 5'6" eraser so I could erase illness from my body. Better yet a big bucket of water to dip that eraser in so the illness would be clean as ever. Ha, then the reality hit me that no matter how many times I tried to wash it all clean it would always come back. Funny how autoimmune disease does that to you. It doesn't care how nice or good or giving you are it attacks and at times when it is least expected. I fought a little more with the voices, and prayed for answers from God. I finally rolled myself out of bed and started the process of waking up and getting moving, not so easy with someone who has arthritis but hey I'm still breathing so there is no other option.

The day started as it usually does except today there was a huge basket of tomatoes on the counter that needed to be taken care of. It's always good for someone like me to have things waiting for us it keeps us going. I know that is true for most but for sickos it is a little different. Hard to explain. I started salsa and was in the middle of cutting up the stuff when the phone rang. It was my doctors office calling about finding me a new Rheumatologist. You know you are chronically ill when you get some odd sort of excitement out of calls like this but right now I need a Rheumtologist. It is hard flying blind with no doctor to call when I have questions about this new med, and about blood tests that are running high. This is another reason I was arguing this with myself this morning because my questions and blood work are flying in limbo with no one monitoring them. I don't like this at all but after the call I felt my cry to God was answered. The conversation about the referral went very well.  I was able to give her much more insight as to why I needed an appointment by October and she took detailed notes to pass along to the rheumatology office.  

Hope! Hope that always keep me going. Hope that always comes from despear. It's funny how that works but also magical and wonderful. My cries out to God always seem to get answered, many times not in my time frame, but answered none the less. I truly believe that call happened today because I am not suppose to throw in the towel on this treatment plan. I am getting relief and feel I have been given back life, somewhat. Doing so much more than I did just a few months ago. Receiving texts from my son last night about the medication that give me hope. All the people around me who love and care about me at times like this give me even more hope. When I become down and the tears roll down my face I hang onto the hope. I wait for the call to set up the actual appointment and in the meantime enjoy the ride no matter how bumpy it is. 

God Bless!