My Chronic Life

I’ve been very weak and sleepy for over a week now, but it’s been much worse these last few days. I call it feeling like a rag doll. These are the symptoms I get from Myasthenia Gravis. I can’t tell you how many hours I sleep, or even how when I wake up I end up falling asleep again. I can’t even fight it.

It is a terrible feeling. The thing that upsets me the most is not being aware of what’s going on around me. My poor daughter has been pretty much without a mother for the last few weeks. I drive her to and from school, barely. But as for anything else, she’s on her own. My husband of course has his full time job and then another one when he gets home. He feels as if he’s going round and round on fitness equipment, like a treadmill and not getting anywhere.

I’m hoping that these symptoms get better soon so I can get back to living the somewhat normal life I’ve been.

Having Myasthenia Gravis and living in Florida pose a huge problem. Since the temperature is often in the 80’s beginning as early as April, staying out of the heat is difficult. You see one of the things that makes MG symptoms worse is heat. Even walking outside to get into an air conditioned car can cause problems. I do try my best to remain in air conditioned buildings and cars.

Even doing that may not be enough. My neurologist tells me that just feeling that blast of heat for a few minutes can cause me to not feel well. He says that he gets more phone calls, emergency appointments and emergency room visits as the weather gets hotter.

There’s so many things that I miss doing in the “summer” in Florida. I miss the beach. If I go I have to have a place nearby where I can get cooled off quickly, so that means not using public beaches. I miss sitting taking my daughter to the park so she can play on the swing sets. I miss going for walks. I miss going to Disney World during the days in the summer.

My attitude has been and will always be though, that although there are things I can’t do, I will focus on what I can. Five years ago, I couldn’t even get out of bed. I was unable to do most anything. The MG is under control now so I’m grateful for that!

One of the best things that has happened to me since getting sick is feeling like every day is a blessing. I know that sounds like a cliche but it’s true for me. I love looking out the window to watch the birds, cuddling with my daughter, being able to attend church services, enjoying food that I’ve never eaten before, watching my furbaby Little Bit slide on our floor, watching the sunset, etc.

I don’t need expensive things any more. I can do quite well with spending time with my family and friends in my messy house, laughing and having fun together. I don’t need to visit Caribbean villa rentals. I can stay home and curl up on the couch to read a book or listen to some music. I can play board games with my youngest daughter or talk to my oldest daughter on the phone. These are some of my favorite things!

This is a continuing series which began with this post about the stages of grief and continued with a post on “Denial” , “Anger“ and “Bargaining“. Looking at the diagnosis of a Chronic Illness in the framework of the stages of grief we’ll now look at the fourth stage, Depression.

Depression is very common with all types of chronic illness. There is so much loss and grief associated with having a life long illness that can either totally change your life or create some kind of life altering situations.

For example, with me when I was diagnosed with one chronic illness it was bad enough, then to learn that I had more along the way made me very depressed. I also was very sad when I had to stop working.

I felt worthless, apathetic and unable to function as a parent or as a wife. I was hanging on to what I thought was important, my “old life” instead of moving forward and trying to find ways to cope.

Finally I sought help from a psychiatrist who helped me to realize that I was indeed depressed and it was normal. I began to take anti-depressants and go to counseling. I also sought the help of my Pastor and began to pray and read the Bible again.

I learned that I am still the same person inside, that my perfectionism only hurt me, that I needed to find something meaningful to do with my mind and my time and that if I began to feel more depressed at certain times that it was normal.

Now I find that if I get a bad report from a doctor that sometimes I get sad. If I have a flare-up, especially one that keeps me from doing the things I’m used to doing sometimes I begin to feel sorry for myself.

I’ve also learned that when I write, or help others, or take part in activities that I feel better. The simple things in life make me happy now. I love to look out my window and watch the birds. I am more aware of my daughters’ smiles and hugs and want more of them!

It used to be that money was important, that my needs included things beyond my family’s budget like Chevy grilles, expensive vacations or nice clothing. Now as long as I have my family and friends with me and my faith all is good.

Please see a doctor if your sadness is overwhelming, if you can’t see any hope and especially if you are thinking about suicide. There is help and it’s yours for the asking.

I absolutely love my house. I love the area where we live, our fenced in yard, the climate, our neighbors, etc. But when our youngest daughter moves out (OK she’s only 9 but I plan a lot) will it be worth it for my husband and I to live in a 3 bedroom home any more?

I’ve gone through this issue when my father passed away. My Mom refused to sell their house even though it was too big for her alone. The upkeep was too much for her to handle financially and mentally. She did finally sell her home when she got to the point of realizing that it was hurting her physically to keep it.

When we are faced with a chronic illness and we have obstacles in our living arrangements that can’t be changed, what do we do? For example, my cousin lives in a two story town house. She has Rheumatoid Arthritis that is not controlled with medication. Walking up and down the stairs is very difficult. Someone who is diagnosed with Chronic Obstructive Pulmonary Disease and is on Oxygen 24 hours may not want to continue to live in a home that is too spread out.

Most of the time you don’t have to move quickly. Use the time to weigh the pros and cons of moving. Talk to others with your diagnosis to see how they cope. If your insurance will cover it, a home visit from an Occupational or Physical Therapist may show you some options.

As for me and my husband we will most likely live in our home for at least 10 more years after our youngest is out of the house. That is if she stays in this area of course. But I know that there will be those issues popping up in the years to come.

We’ve discussed moving to a smaller home here, moving to other parts of Florida, and to look atBranson condos or other areas of the US. The good thing is that we’ve begun to speak about it.

I’ve been avoiding tear jerker movies and books for a long time. I’d much rather laugh than cry because when I laugh I feel good even if I’m having a terrible flare-up.

For those just not feeling well days, or the normal pain level days I try to laugh a lot. I make myself laugh and that shows how good my sense of humor is!

Hubby and I were talking the other day. What began as a serious conversation about the terrible real estate situation in our area turned into a laughing until I almost wet myself conversation.

After I mentioned that another home is up for foreclosure right around the corner, Hubby asked if I wanted to buy it. Here’s how the rest went:

Me: Sure we’ll use all the money we have in savings for the down payment. And we can use Peanut’s college fund for the mortgage.

Hubby: What will we do about the taxes and insurance?

Me: We’ll sell my medications on the street corner. People will see lots of prescription bottles. They won’t know what they’re for.

Hubby: Great! I’m sure that we can even save up for retirement on your meds. Maybe we can buy near a Branson private golf.

Me: I think we can own the golf course.

Find humor in something. There’s always someone who has it worse off than you.

As someone with multiple chronic illnesses I’ve prepared my Living Will, Health Care Surrogate and my Will. I’ve spoken to the people who I would like to help my husband raise our youngest daughter if something happens to me physically or if I die. I have some of my funeral arrangements made. Is this morbid? Not at all. The reality is that I’m sick with many health conditions. They are under control, thank God but something minor can happen and it can cause me great physical harm.

My husband doesn’t like to think about these types of things. When I got us an appointment for an attorney to write up our will, he was angry. I needed to have this done before I had major surgery almost five years ago. I wouldn’t feel comfortable unless I did this.

I don’t have life insurance any longer now that I don’t work a regular job. I know that we need this as our income will drop when I die plus we’ll need childcare. I’m trying to talk my husband into looking into life insurance rates for me. This is another way to feel prepared.

Does your health issues get in the way of your love life? Is your chronic pain not allowing you to enjoy a loving relationship with your spouse? Are there concerns about how your body may have changed in appearance due surgery, scars, or other health related reasons?

Being able to talk about your concerns with your spouse is vital to getting back on track. Find a time when you’ll have quiet, no interruptions and privacy. Also make you and your spouse as comfortable as possible. Then talk as openly as you can about what’s bothering you. Communication is the key to a good relationship. So getting past this can help both of you grow together as a couple.

If you’re not sure why your love life is not the same or lacking then it may be time to speak to a therapist. If you do know why and can’t communicate to your spouse it’s time too. There’s nothing wrong in seeking the advice of a professional. You may even want to start with your doctor. I know that often we see many doctors or specialists and it may be difficult to pinpoint which doctor to begin with. I’d suggest your Family Doctor or GP. If that doesn’t go well, a woman can make visit her Gynecologist.

There can be drug interactions that can cause a low libido. You can speak to your pharmacist or read about your medications yourself. But if this problem is more deep seated, meaning that it is more of a personal problem not a health one, a counselor, therapist, psychiatrist or psychologist may the route to take.

There are many reasons for a lack of sex drive but having a chronic illness or multiple conditions can interfere in a couple’s relationship in many different ways. There is always hope though when there is a relationship built on love, trust and commitment. Sometimes taking things slowly like holding each other, kissing, cuddling, etc. for a few days of weeks can help you feel more intimate again.

Please know there is help and hope.

Time is really flying by too fast. I can’t believe that it’s 2008. I’m still making mistakes and writing 2007! I went shopping recently and saw the Valentine’s Day display up. My goodness, that’s coming up in a few weeks.

I am not prepared as usual. Hubby and I don’t go overboard on Valentine’s Day gifts but like to do something small for our daughters and for each other. We’re trying to stretch our money as usual so finding a site that offers coupons is helpful.

For our daughters I was thinking of giving them a photo I took of them together. I found a site that has Snapfish deals so I can have the photo printed. I can even have one sent to Lady Ali from Snapfish so there’s no need for me to get the photo from them and then send it again.

There’s not many romantic things that Hubby would like so I think I’ll look for something that he collects instead. His sports collection hasn’t had any new additions in a while. I found some MLB.com discount coupons. This will work perfectly.

I’ve joined the Woman’s Bible Study that meets every Wednesday morning at 10 AM. We’re studying the book What’s So Amazing About Grace by Philip Yancey. This book and the study today has me thinking about a lot of things in my life. I need to focus and re-think some painful issues concerning broken ties in my family.

It’s so easy to say that I’ve tried everything instead of really trying forgiveness and prayer. The Pastor’s wife who is running this study made a comment about how difficult it is to be angry with someone when you’re praying for them.

So instead of me giving myself credit for asking for forgiveness, for saying I’m sorry I’m going to pray and work on true forgiveness that only comes with the grace of Jesus.

We plan on watching the movie, Babette’s Feast which is mentioned in the book. I’m looking forward to that. I’m also looking forward to getting to know the women in this group on a more personal level. I’ve opened up a lot in one meeting. This type of study will definitely bring us closer together.