thorninmyside

When you are living with someone that has limitations due to a chronic illness it can be tempting to attempt to control their behavior.  I don’t think people do this out of ill will or the intention of being upsetting but it is.  I hate when my hubby lovingly reminds me that I shouldn’t eat that piece of cheesecake because of my high cholesterol.  That I should really use my wheelchair at the mall because if I don’t I will be tired.  That I should wear a coat because of the cold temperatures outside.

Let’s establish a fact.  I am a woman, not a child.  My husband knows that.  But, he cares about me and worries about me.  Most of the time that warms my heart and makes me love him even more.  But, it is the holidays.  I may make the choice to eat a piece of cheesecake or stay up late watching holiday movies.

My advice to caregivers and spouses is to let us do that.  99% of the year I do what the doctors want me to do.  I eat bland food, I rest, take naps, use my wheelchair on outings to preserve my energy, etc., etc., etc.  But, my entire life I have loved Christmas time so if I want to make an applesauce cake and actually eat a piece- let me be.

If I want to go outdoors in just a sweater and scarf so I don’t feel overheated- let me be.

If I want to go to the company Christmas party and stay up late- let me be.

I am completely aware of the consequences of bending the rules and have probably made a back-up plan to deal with such.  Whether it be taking a longer nap the next day or going back to my fat free taste free diet January 2nd.  But, for now, in the interest of a peaceful and enjoyable holiday season- please let me be.  It is the best gift you can give this holiday season!

It is important to discover ways to minimize the impact of chronic illness on the other members of your household.  Yet, at the same time it is the challenges we face in life that make us stronger.  That leaves us with a delicate balance to achieve between over and under protecting our loved ones from what we deal with as a result of our illnesses on a daily basis.  While I am quick to remind you all that I am by no means an expert (just a woman living with MS) these are the things I have learned while striving for said balance for my family:

• Your family member’s are not stupid, so don’t treat them like they are.  Don’t say you’re fine when you aren’t and don’t milk your symptoms to get what you want (yes, I have done that a time or two).  Just be yourself.  Your spouse and kids will feel much more at ease if they feel like they can trust you when you say “It’s nothing, I’m okay” or “just let me be for minute”.  If you aren’t honest with them, then communication can become very difficult and everyone is going to feel misunderstood and even used.
• There are things that children do not need to know specifics about, such as finances and treatments.  My tweens know generally that my care is expensive and that means that, at times, they will not be getting the latest gadget or video game.  But, they do not need to know the extent of our financial situation.  They have enough things to worry about, the biggest being navigating adolescence!
• Resist the temptation to downplay or minimize your loved one’s physical issues.  Sometimes, when my hubby complains about a shoulder aching or being tired, I am soooo tempted to say “shut up, whiney pants!  I am always tired and something(s) always hurts”.  But, most of the time, I remember that he does not live in my body (good thing, I don’t think he could take it and he isn’t telling me about his pains to ignore mine or one up me.  He is sharing his issues with me because I am his wife and he (even when I don’t) realizes that I am not just an illness, but still his partner on this journey through life.  So, be thankful for those moments and treasure them.
• When you lash out in anger, snap at your kids, cry at the drop of a hat or sleep through dinner- apologize.  Not for your illness (since that is beyond your control) but for your behavior- which you can control.  Acknowledge when you are taking out your overall crankiness on your family and let them know you are aware and trying not to do that.  That will go a long way in easing resentment and the feeling that they have to walk on eggshells around you.
• Plan your day so you are at your best when your family is around.  For instance, I am at my best in the morning but my kids are at school and my hubby is at work.  So, I try (even when I don’t feel like it) to take a nap before they return home so that I am refreshed and ready to be the best mom and wife I can be for the few hours each day I get to spend with them.
• One of the most important things is to not let the Devil whisper in your ear that you are a burden and a problem to your family.  They love you and they need you.  Becoming ill does not change that.  In fact, in many ways it intesifies their need to know that you haven’t changed, even if your body and abilities have.  Remember that you are still the person you were pre-illness, but some areas of your life may need some renovation. 
• Reach out.  Don’t shut them out just because you don’t want to bother them.  My eleven year old is the best hug giver.  It blesses him to hug me when I am feeling down as much as it blesses me to be hugged.  Let them do what they can and let that be a blessing to all.

 What are some ways that you manage your illness as it relates to your loved ones?  Share it with me in the comment section below.

When you are living with a chronic illness having a support system is critical to your health.  Support comes in many different forms.  There is professional support from the medical community, there is emotional support from your friends and family, spiritual support from a religious community and belief system and physical support from medications, alternative therapies, etc.  However and wherever you find support is fine.  It is just imperative that you have a support system.  We were not designed to go through life alone and certainly not during difficult times.  And, let’s face it:  living with a chronic illness is one difficult time after another. 

We need people to come alongside us and pick us up when we are down, tell us what step is necessary for treatment, pray with us, hold our hand or slap (not literally, but with words as only good friends can) us silly to get us out of our funk.

So, how do you find support? Or, maybe more importantly, how do you accept the support?    Sometimes, it is so hard to let people help us.  Reaching out for support and building your support system requires vulnerability and it also requires you to have shed any residual feelings of denial about your condition.  Asking for help, admitting you can’t do this alone means putting aside pride and replacing it with relationship.

Here are ten things that have helped me in building a support network for myself:

1. Go small.  By this I mean, do not make it your goal to cast a net and build a support organization, rather than network.  Not everyone is going to be right for your team.  Don’t be so anxious to have support that you turn off your discernment and intuition.  I always remind myself that Jesus surrounded himself with many people, but only kept twelve in intimate relationship.
2. Number 1 was a word of caution is as number 2.  Resist the urge to go it alone.  If you are anything like me you want to get a big bullhorn, stomp your feet and scream “I can do this myself”.  Let go of that or you will push away the very people God has sent to be part of your support network.
3. Take advantage of the internet and technology.  I have met so many wonderful people through online medical sites, online support groups, the National MS Society website, etc.  Google your particular “thorn” and you will be amazed at the deep and supportive relationships you can build with people going through exactly the same thing as you.  And, someday, when the dust has settled on your new diagnosis, you can be a cheerleader to someone.  I have only been diagnosed since January 08 and have only been on treatment since July but have already had the opportunity to comfort the newly diagnosed as well as be comforted by invisible illness veterans.  This type of support is invaluable.  (at the end of this site there will be links to some websites I have found helpful)
4. Check out local resources.  Some churches and hospitals have support groups (although I always caution that support type groups need to focus on the positive and not turn into a group pity party) and many national associations have local chapters that can provide you with information on physicians, physical therapists, prescription assistance, etc.
5. Remember that family and friends are human and do not know what it is like to live in your shoes.  So, as much as they want to be there for you and as much as they genuinely care, they will say the wrong thing; ask the wrong question; give bad advice and make you feel like a burden at some point.  Cut them slack and forgive quickly.  They are (i certainly hope) doing the best they can.
6. Play on strengths.  If you have a friend that is great at encouraging but really gets uncomfortable talking about the details of your condition, then let that person be the one you call when you are feeling down- not when you need to talk about your injection site reactions, your bladder incontinence or the horrible phlebotomist experience!  Don’t write somone off just because they can’t be your whole support team wrapped into one person!
7. Be a good friend back.  Somedays, I am a grump because I am in pain, tired, blah, blah, blah.  But, I will either apologize in advance or go back and apologize if I have snapped at someone or not returned a phone call.  Remember birthdays, thank them for what they do for you.  Never, ever take your friends and family for granted.
8. Try not to be (what my friend Rebecca refers to as) a ‘Debbie Downer”.  Your illness is a part of you, it does not have to define you.  Allow the joy of the Lord to be your strength and keep a positive attitude.  You will be amazed at how many positive people that will attrace to you as a result!
9. In the same vein, be authentic.  If you are having a bad day, try not to put yourself in situations where you will have to put on the “happy” face and pretend you’re fine.  It is perfectly okay, and sometimes the best for your overall health, to call and cancel something than to overextend yourself and pay the price later.
10. Be true to yourself.  Surround yourself with people (virtual and in real life) that make you feel good, that support you without judgment and that love you, illness and all!

Be sure to check out these links for more information:

http://www.cafechronique.com

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http://www.cafemom.com

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