relationships and chronic illness Archives

How To Have Family Time Despite Chronic Pain and Chronic Illness and Tips To Help

December 24, 2018 by Elizabeth Pain 1 Comment

How To Have Family Time Despite Chronic Pain and Chronic Illness and Tips To Help

Having family time despite having chronic pain and chronic illness doesn’t have to be too hard. We often think “family time” means to be out and about doing what other “healthy” families are doing and that’s not always the case. Family time means spending time with your family, connecting with the ones that love you most. This means it could be cooking together, watching a movie together, playing a board game together, or just snuggled up on the couch talking. Family time is just being with each other and sharing in one another’s company.

My family time seems to be getting harder and harder lately, with my 2 oldest kids off to college and working and my youngest in the thick of high school. It seems like someone always has something going and we just can’t seem to connect like we used to. Recently when I found out no one had plans over a Saturday afternoon we decided to take advantage of it and meet up for lunch.


After lunch we decided to check out the coolest little outdoor coffee bar that had igloos! The igloos were heated inside too! Now living in Michigan and having CRPS, I know to dress in layers and have a purse full of things I may need if my pain decides to spike when I'm out (I'll be writing a post about that soon). We then drove around looking at the different buildings and Christmas lights.

It didn't cost very much and we were able to create some new memories. Everyone ended up going their separate ways afterwards, but it was fun to be spontaneous and picking something low-key to do was good in case my pain was high. Family time despite chronic pain and chronic illness can be done, you just have to set realistic expectations and plan for it.

Here are five tips to get you through a day out with your family despite chronic pain or chronic illness:
1) Pick Something You Know You Can Do - This one is important! Sometimes our mind likes to say "I can do that" but our bodies like to say "are you kidding me?" In this case listen to you body! Choose something within your limits.
2) Have a Plan B in case your pain spikes or you're having a hard day - This way you do not have to cancel, you can just bring it back to the house and be able to be comfortable while still being able to be with your loved ones.
3) If going out with the family, be prepared with extra medications - I keep extra medication on me at all times, this way if I start to feel the pain creep in I am prepared.
4) Wear the right outfit - If you know your going to do a lot of walking, maybe those cute boots can wait. Wearing layers to not get too hot or too cold and wear something you are comfortable in is key!
5) Lower you expectations - I can't tell you how many times my family just wings it. We just like to go with the flow, this way there is no set schedule and I don't have to worry about letting anyone down. We just go and have fun!

I would love to hear about what you do when you have family time. What have you found helpful when you go out or stay in with family?
 
 
How To Have Family Time Despite Chronic Pain and Chronic Illness and Tips To Help

7 Ways to Provide Comfort to a Loved One with a Chronic Illness

November 16, 2018 by Guest Writer Leave a Comment

7 Ways to Provide Comfort to a Loved One with a Chronic Illness

7 Ways to Provide Comfort to a Loved One with a Chronic Illness – If you have a loved one with a chronic illness like Multiple Sclerosis or Pulmonary Fibrosis, you want to be supportive and encouraging, but might not know where to start. It’s difficult to understand what your loved one is going through, and you don’t want to end up making them feel worse despite your best efforts. Sometimes what we see as supportive can cause a person with a chronic illness to feel guilt or shame about their condition. People with chronic diseases want the same things that everyone else wants. They want to live a life on their own terms, find love and be accepted.

Support from friends and family can be just as crucial to a person’s physical and mental well-being as medical care. If someone you know is living with a chronic illness, they need you more than they let on–but there is a right way to go about providing them comfort. If you want to be a good friend or a supportive family member but aren’t sure how, check out these seven ways experts recommend will help provide comfort to the person.

Listen

It can be easy to want to give your loved one advice, talk to them about cures or be critical of their coping mechanisms. If someone with a chronic illness wants to talk, don’t make the conversation all about you or relate with examples from your life. Focusing on your opinions can have the unintended consequence of marginalizing their challenge, pain or victory. Don’t try to fit their shoes–just try to be as supportive as you can.

Sometimes your loved one just needs a supportive ear. It’s hard living in a world where most people don’t share your day-to-day reality and having someone who is willing to listen can be a mighty tool. This is a practical and straightforward way to support a person with a chronic illness that you care about and can offer more help than you realize.

Check In

It can be hard for people with a chronic illness to reach out to friends and family, which can make staying in touch more challenging. This happens when a person’s life changes so much that they have a harder time relating to others. Reach out to the person in your life who is living with a chronic illness through a text, email, Facebook or a quick phone call. Even if you don’t have much to say, just letting them know you are thinking of them and that you care can mean the world.

Learn About the Illness

You may have never heard of your loved one’s chronic or invisible illness before they were diagnosed. Take the time to give it a quick Google search and gain at least a basic understanding of their medical condition. Or connect with resources providing information about new ways to treat the disease. You will be a much better person in their support system if you know what triggers flares, warning signs of complications and how symptoms usually present.

This knowledge will empower you to have better communication with your loved one, understand their coping strategies and support their treatment. Don’t use what you’ve learned to lecture them on what they should and shouldn’t be doing. Your friend already knows everything there is to know about their illness and needs your support, not direction.

Be Flexible

The relationship dynamic that you originally developed with this person is going to change now that they have a chronic illness. You might not be able to continue certain activities you used to share, like going out for drinks, dancing and hiking. Your friend may not feel like being active or interacting with large groups of people when they are feeling bad or experiencing symptoms. Be flexible enough to enjoy downtime or quiet evenings in, playing a board game or watching a movie. It’s not what you do with your loved one that counts. It’s being there to support them through their chronic illness that will make your relationship stronger than ever.

Encourage Rather Than Pity

Living with a chronic illness can be difficult on a daily basis, and it can be hard for us to handle emotionally when we see the person we care about in pain. If you sense that your loved one is having a hard day or feeling down, offer them encouragement rather than pity. Lead by example and try to practice positivity that day and eliminate negative talk. Sadness and depression can be challenging to support, but encouragement and a positive outlook is more helpful than pity.

Don’t Get Frustrated

It’s difficult not to get frustrated when a loved one is in pain and at the mercy of outside forces. Seemingly out of the blue they can become distant, angry, emotionally needy or sad. Their reactions might not be as rational as they would be under different circumstances, so don’t lose your cool or get frustrated when times get tough. Your good intentions won’t always be met with the reaction you expect. Know that pain can bring out difficult qualities in people and be as calm and understanding as you can be.

Be There Long-Term

The definition of the word “chronic” is long-lasting, persistent and constantly recurring. Your loved one isn’t likely to shake this illness anytime soon and they are going to need you to be there for the long haul. As hard as it is to deal with your loved one’s low energy, constant doctors’ appointments and different attitudes, it is even more difficult for them. They will need regular encouragement, support and love–forever. They need your understanding that they are going to have to fight this–forever.

Being there for the long haul is the most important thing you can do for your friend or family member who is living with a chronic disease like pulmonary fibrosis. Let them know that through their good days and bad days, you aren’t going anywhere.

About The Guest Author:

Morgan Clarke is a retired caregiver for those with chronic illness. She now spends her time finding ways to make life easier for people with limitations and spending time with her husband, grandchildren and dog Pip.

What tips have you found helpful when providing comfort to your loved one? Or what do you wish your loved one would do to provide support and comfort for you?
Please us a comment in the section below.

7 Ways to Provide Comfort to a Loved One with a Chronic Illness

Everything You Need to Know About Dating with a Chronic Illness

November 9, 2018 by Guest Writer 1 Comment

Everything You Need to Know About Dating with a Chronic Illness

Everything You Need to Know About Dating with a Chronic Illness – If you live with a chronic illness like pulmonary fibrosis, diabetes or Crohn’s disease, your dating life is going to look a little different–and that’s okay. Being single and navigating the world of dating is challenging for everyone, but it can be especially difficult when your life comes with complications like needing to pack medication every time you leave home for more than a few hours.

Finding someone who shares your interests and who will support you through life’s ups and downs takes time, so be patient and have fun. Whether you choose dating sites, singles events, clubs or meetups, putting yourself out there will help you find that special person who will love you unconditionally–even on your worst days. If you are single with a chronic illness, follow these tips to make your dating journey a little easier.

Be Upfront About Your Illness

Deciding when to disclose your illness to a potential romantic connection is entirely up to you, but consider telling them about it at the beginning of your interaction. It can be difficult to open up about something so personal to a stranger you don’t know and trust, but it can help you weed out people who aren’t worth your time. If someone isn’t going to accept all of you and love you the way you are, that person isn’t worth dating.

If you are anxious about discussing your illness with a date, why not use technology to your advantage? Tell them about it over an email, text message or phone call. People’s first reaction when they find out about your illness may be shock or discomfort, so allowing them time to unpack that information before you sit down for a date can help you both decide if moving forward is right. Plus, by the time you meet up, they’ll have had a chance to let it settle and come up with meaningful questions they have about your illness and how it affects your life. Being upfront is scary, but it’s an incredibly helpful dating tool.

Highlight Your Best Assets and Don’t Be a Victim

You’re going to be just as self-conscious on a first date as anyone, so practice the best piece of dating advice out there and play up your best assets! If your illness has caused some weight loss or weight gain, go shopping for an outfit that fits great and highlights your favorite body parts. Experiencing hair loss? Try a cool hat or an updo. Figure out what you love most about yourself and play up those areas while minimizing the things that make you feel self-conscious. Confidence looks hot on everyone.

People are going to follow your lead when it comes to your illness. The more relaxed you act about it, the better they will feel about it. If you are sad about it, they will feel sad about it. Lead by example and don’t walk around holding up a sign that says you’re a victim. You’ve got to love yourself before anyone else can love you–with or without a chronic illness.

Be Willing to Adapt

Things aren’t always going to go as planned, so adaptability is key to avoiding some of the frustrations of dating with a chronic illness. You might have just spent hours getting ready for a date and then realize you need a nap. That’s okay. Sometimes your significant other may want to do something your body won’t let you do. It’s going to be frustrating at first, even embarrassing. But once you and your partner learn that plans will sometimes change, you’ll see that it doesn’t need to affect your relationship negatively.

If you have dietary restrictions, consider alternatives to the dinner date. We tend to have it hard-wired into our brains how a date should look, but quality time can be spent in many ways. Do something outside, enjoy the arts, see a movie and pack your snacks from home. Who cares if your dating life looks a little different than it does in cheesy romantic comedies? Life happens and the more willing you are to adapt, the better you can love and be loved.

Don’t Overdo it and Laugh it Off if You Do

Adventure sports or extreme roller coasters might not be the best first date ideas if you live with a chronic illness. Don’t pretend like something is fine if it’s not. If you have a migraine, you’re not going to have fun at a rock concert, and if you are miserable, your date isn’t going to have fun either. It’s better to be upfront about how you are feeling and what you can do than try to tough it out and deal with the consequences later. Pretending isn’t fun and it’s not a good way to get to know someone.

When you do find yourself in a less-than-ideal situation, remember to laugh it off. You’re going to fall sometimes or need to sneak away to give yourself medication or treatment in an awkward way. Don’t take it too seriously. There are many circumstances you go through with a chronic illness that are silly and it’s best to laugh about them rather than make them a big deal.

Recognize When They Aren’t Worth Your Time

Some people just don’t have what it takes to handle someone’s health issue. Some people lack empathy or don’t have the willingness to nurture others. If someone is insensitive, rude, describes you as “difficult” or their lifestyle contradicts yours, you need to let them go. People who are worth your time and energy as a friend, let alone a potential romantic partner, will understand that you have good days and bad. They won’t ever fully understand what you go through, but they’ll want to try. They’ll be respectful, supportive and loving.

Remember You Are Worthy of Love

Don’t define yourself and your personality by your illness. You are a person, first and foremost, who happens to be sick. When you stop thinking of yourself as an illness, others will, too. You may have certain limits in life, but that doesn’t make you less worthy or capable of love. Not by a long shot.

About Our Guest Author:

Do you have any tips about dating with a chronic illness or have you ever dated someone with a chronic illness? Please leave us a comment below.

Everything You Need to Know About Dating with a Chronic Illness

How To Have Family Time Despite Chronic Pain and Chronic Illness and Tips To Help

Here are five tips to get you through a day out with your family despite chronic pain or chronic illness:

I would love to hear about what you do when you have family time. What have you found helpful when you go out or stay in with family?

7 Ways to Provide Comfort to a Loved One with a Chronic Illness

About The Guest Author:

What tips have you found helpful when providing comfort to your loved one? Or what do you wish your loved one would do to provide support and comfort for you? Please us a comment in the section below.

Everything You Need to Know About Dating with a Chronic Illness

About Our Guest Author:

Do you have any tips about dating with a chronic illness or have you ever dated someone with a chronic illness? Please leave us a comment below.

What tips have you found helpful when providing comfort to your loved one? Or what do you wish your loved one would do to provide support and comfort for you?
Please us a comment in the section below.