Guest post: Making the most of your summer

Vacations and holidays can look different for those of us with a disability or chronic illness.  Much of the time all we can see is the extra work that comes along with packing and unpacking suitcases, sitting in a car for long periods of time, and all the extra walking that comes from sightseeing and going from one destination to another. We know because we have more than likely attempted at least once to recreate those picture perfect vacations or those fabulous holiday parties from before our sick days. The problem is that it takes us at least double the energy if not more to do what a normal person could do. And then comes the burn out afterwards. We pushed ourselves too far. Now we have a huge mess to clean up or a long trip home and zero energy left. Then comes the self loathing, or the questioning God, or the berating oneself. Why can't I be like everyone else? Why can't I do the things they can do? Like get the picture perfect family photos like they get? Why do I even bother? I didn't enjoy myself. I didn't have fun. All I did was exhaust myself. Maybe just skip the family vacation.

For many of us with a disability or chronic illness our already overstretched finances need curbing wherever we can and taking a vacation is often one of the very first things that we cut from our budget. Those of us who receive disability know that it is barely enough to cover our needs, and those of us who work may have needed to cut back our hours because we struggle with fatigue or pain.

After working since I was fourteen I eventually quit working full time at the age of thirty two to be a stay at home mom. The daily fatigue and pain I was feeling from inflammatory arthritis, thyroid disease, and fibromyalgia finally got to be too much. Our family lost half of our income in that moment. Vacations were temporarily put on hold. Once we got used to the loss of income and got our equilibrium back we began to take vacations again.

Sometimes we are afraid that where we are going may not have accommodations for our disability. Maybe our disability is slightly embarrassing(think colostomy bag or catheter) and we don't want to leave our comfort zone. What if we are stuck on a plane or cruise ship and need emergency medical help and can't get the help we need? There are so many reasons why vacationing is more complicated if you have a disability or chronic illness. It can also be a little bit scary. I wish I had a perfect answer to calm your fears, to finance your vacation, and to give you the energy to enjoy it to the very maximum of your ability. You have to decide for yourself and your situation what is best, and sometimes you can have the most fun you will ever have in your own back yard.

    ~  Courtney Diggs

Guest post - When Chronic Illness Threatens to Steal Your Joy

   Joy and Illness seem like two words that shouldn't even belong in the same sentence together. They seem incompatible, like laughter and pain. I promise you though, you can live a life of chronic illness and even pain, and still have laughter and joy.  Not every moment. Everyone deserves to break down once in a while. We chronic pain sufferers even more so. But we have but one life to live and I plan to enjoy it the most that I can.  See, I knew something was wrong about eight years ago. I would come home home from work, plop down on the couch and hardly be able to get up again the rest of the evening.  I would wake in the morning feeling worse than when I when to bed the night before.  At this time I had no health insurance so I put off going to the doctor. It wasn't until I started sweating profusely and trembling violently that I finally went.  I was soon diagnosed with Fibromyalgia and Graves Disease (Overactive Thyroid).

Things kept changing for me, evolving, and soon my joints were burning. First my lower back and hips, then my shoulders, ankles, feet and hands.  Not too long later I was diagnosed with inflammatory arthritis, chronic migraines, and clinical depression.  

 

Pain soon became my close companion.  John Green was really on to something when he said "That's the thing about pain. It demands to be felt." Pain is continually bringing your mind back to the problem. That's the way God designed it.  Pain is a signal to bring your attention to a problem in your body that needs to be fixed.  But what if it can't be fixed? What if even doctors don't know how to treat your diseases? What are you left with? Pain. Your left with continual pain that is demanding you feel it and think about it. What happens when you are always thinking about your pain? You lose your joy, your love for life.  Here are a few of the ways I have fought to keep my joy.

 

Know your limitations. I would be lying if I said I wasn't still working on this.  I have, however, been better at setting boundaries for my children.  They now know that the mornings are a very painful time for mommy because my joints are stiff and sore and because of my fibromyalgia fatigue.  The boundary I have set for them in the morning is that I get at least one hour to myself to drink my coffee and to wait till my pain medicine kicks in and starts working.  They know not to disturb me or to ask for favors during this time.  Having autoimmune diseases leave you with probably less that half the energy a normal person has to work with during the day.  With three kids to take care of I almost always overdo it.  Many times by eight in the evening I am exhausted and can do nothing besides rest.  I also only plan one activity a day. Sometimes grocery shopping is all that I have the energy to commit to.  So I know that if I need to go shopping and someone asks me to do them a favor that requires lots of energy I just have to say no.  I cannot give what I do not have.  

 

Having a chronic illness or being disabled may require you to set new goals or dream new dreams.  If you had asked me ten years ago what my goal was I probably would have told you I wanted to be a business owner.  Now? I just want to be the best wife, mother, homemaker I can be.  You may have to change your life goals up now that you are ill but dreams, goals, and hope are so very important to your happiness now.  It gives you something to work towards, something to look forward to.  What am I trying to say? Never. Stop. Dreaming.

 

If there is something in your life that your are discontented with, make a change.  If your doctors aren't giving you the help you need, switch doctors.  My rheumatologist had tried only one drug for the arthritis is my joints, and when I told him it wasn't helping, he shrugged and told me that was all he could do for me.  This, to me, was unacceptable.  I have three children who depend on me to raise them.  I need to be able to get around as easily and pain free as possible. So what did I do? I switched to a new doctor who tried a different medicine for me that worked better.  I didn't want to do it because I had been going to him for five years and the next closest rheumatologist was over an hours drive away.  But only you know what you can and cannot live with and there are some times in life when change is necessary.

 

Don't tolerate negative people.  You know the ones.  The ones who are always criticizing you and everyone else.  I can't count how many times I would like for certain people to feel what it feels like to live in my body even just for a day. I had a family member that believed fibromyalgia was a made up condition.  She said I was fine and needed to go back to work.  I cannot tell you how angry this made me.  She really had no idea the internal hell I was going through on a daily basis.  I couldn't change her but I could change how much time I spent around her and I cut it back tremendously.  Judgemental people who only have time for you when they need you and expect you to drop everything at their whim have no place in your life healthy let alone unwell. Life is hard. It's hard well. It's even harder sick.  Do yourself a favor and be a friend and have friends that build each other up instead of tearing each other down. 

 

Don't forget to thank God for your blessings.  Sure your health may be poor but I'm willing to bet there are many good things in your life also.  There are blessings all around you if you will take the time to stop and look.  I do realize that we all have bad days sometimes.  Maybe we slept poorly or maybe we are in pain.  When all else fails I think you should do what you can to take your mind off it. Read a great book.  Snuggle and watch a scary movie with your favorite person (or pet!). Soak in a hot tub. Get out and do something fun with your friends.  Whatever it takes to get your mind off your problems.

 

Don't forget to invest back into yourself! Just because we are unwell does not mean that we aren't still women. Get your hair and nails done, put healthy food into your body and watch it transform into a slim new you! Buy yourself a new outfit.  You will feel better about yourself and you will find some of that joy and happiness that has been escaping you lately.  Just don't forget that you are still a women and you deserve to take care of yourself just as much as anyone else.                     

 

    ~  Courtney Diggs