Finding The Holiday Spirit with Chronic Illness

As December makes it’s appearance, it’s time to start thinking about the coming Holidays. Hannukah, Christmas, Kwanzaa and New Year’s Eve are the major celebrations for this time of year, and when you live with Chronic Illness, it can be hard to get into the spirit.

Plan In Advance

As Hannukah, Christmas, Kwanzaa and New Years get closer, it’s a good idea to start thinking about what you’ll do and where you’ll go. Are there family traditions that can be changed in regards to who cooks or hosts events? If it’s been you in the past that hosted a large group, perhaps someone else could do it this year and you could be the guest. Start to prioritize the things you most want to do (attend a Santa Claus parade, a Festival of Lights, Religious Services, visiting certain friends, etc.) and then build your schedule around that.

Keep Managing Your Chronic Illness

Once you have a schedule in place, you can start building in rest days before and after events. Don’t forget about the day of the events themselves and how you need to ration your energy to have the greatest chance of being able to participate.

Go to your scheduled doctor’s appointments and take care of yourself. It’s so tempting to cancel these things at this time of the year, but don’t. Make sure you are taking your medications as prescribed. If you have special dietary needs, keep them in mind when eating out and preparing meals. Now is not the time to go off a medically necessary diet.

Make Lists

Make lists of things you need or want to do. Prioritize those lists. Delegate and let some things go. Take advantage of online shopping to save your energy.  And don’t be a perfectionist. There’s no room for perfectionism in a chronically ill person’s life.

Be flexible with how things might change and decide if you’re still able to attend when changes happen. Don’t stress if you can’t…decide what you can change to make things work.

Pace Yourself

If you know you have a party to go to in the evening, that morning is not the time to scrub out your tub. This is another area in which I struggle. Pace yourself throughout the day and over a period of several days. If you are planning on going shopping with friends on Saturday, plan on Friday and even Thursday being light activity days.

Be Honest

If you’re going somewhere else to celebrate and you have energy limitations, let your host know that you may not be able to participate fully in the activities. If you aren’t able to host at your house like usual, ask others to chip in and host instead. Being honest with people in your life about your limitations can be helpful for avoiding hurt feelings later. Think through what you need to explain to others ahead of time to allow the events to go smoothly.

Enlist The Help Of Your Spouse Or Friend

Enlist the help of your spouse or a good friend to be part of your team during the holiday festivities. This should be someone who knows you well and will be able to read your responses to situations. This person will help you feel safe in the situations you’re entering and will watch for any indication that you aren’t feeling well.

My husband Ray, serves in this role for me. Another friend or family member could also do this. Basically, Ray notices when I’m getting worn down and my health is going downhill. He’s particularly aware of my flagging energy, and will often ask me how I’m doing to gauge whether it’s time to leave. I also know I can tell him I’m ready to go and he’ll take me home immediately if I need to leave.

Don’t feel guilty if you have to leave a situation early. Be thankful instead that you were able to attend, even for just a short while. Gratitude plays a huge part in a successful Holiday season.

Be Okay With Your Plans Changing

This one is a big part of normal life with chronic illness. Flexibility is important because things can change on a moments notice when health issues are a concern.  Even if you have everything planned and scheduled, do yourself a favor and release expectations. If you are religious, prayerfully plan your schedule but then hold those plans loosely. Ask God to cover you with perfect peace in whatever situations you may encounter with your health over the holidays.

Ask For Help

Ask for specific things. I don’t like to depend on anyone for help, but if it means making the holidays more manageable, I think it’s worth it. Sometimes, people will offer to help, but they don’t say what they are willing to do. Having a list ready with ideas of what others can do for you will come in handy when people make those kinds of offers.

Do you need help with laundry? Running errands? Housework? How about help with wrapping gifts? Think about all of your regular and holiday tasks and delegate some of them to family members and willing friends.

One thing I ask for when my friends offer to help is that they make me a frozen meal. It helps me to eat healthy but without having to cook during the times I’m either busy or resting. I’ve never had anyone resent the request once they’ve asked what they can do to help me.

Shopping

Shopping can be one of the most stressful parts of the Holidays. Getting out and about can be tiring and painful so make use of the internet to do the majority of your shopping when you can. Most online shops deliver with reasonable pricing and sometimes if you have to ship a long distance, the cost is still worth it to prevent the stress from piling on. Ask for Gift Receipts or Messages so the receiver can return or exchange your gift if necessary.

I keep an Excel spreadsheet with the name of the person I’m shopping for, what was purchased, where and when. It’s easy to refer back to in case there are any questions or problems.

Connect With Others

Try to make time with friends you might not otherwise get to see, even if it’s just for a short while. Have a quick get together at a coffee shop, chat with a girlfriend about a sappy Christmas movie you’ve both watched. Make an effort each day to reach out to someone. Text, Facebook, instant message, make a phone call. You don’t have to carry on an hour-long conversation, just a brief connection can be enough.

Find “Me” Time

Build in some time just for yourself during the holidays to read, craft, rest or do whatever else will help to give you some “me” time. It’s important to recharge your batteries. If being surrounded by people is what energizes you, then do that…it’s all about what makes you feel good.

I tend to enjoy booking a massage once a month during the Fall and Winter months. I find that it helps me physically and mentally – having that to look forward to after a busy time is a relief. I feel better after my body has had the kinks worked out and I’m often more energized as well. Find out if your insurance covers the cost and look for training schools in your area for better pricing.

Make Time For Your Spouse Or Significant Other

It’s so important to carve out time for the two of you. With all the busyness going on around you,  communicating can sometimes take a backseat, especially if you aren’t feeling so well. Be honest about how you are feeling and ask for help when you need it. Try to sneak in a few inexpensive “dates.” Drive around and look at the Christmas lights, stop for some hot chocolate, attend a Christmas program together. Just enjoy each others company.

Laugh As Much As You Can

This one is one of my favourite pieces of advice. Laugh. Just do it. I’ve found that no matter how horrible I feel, laughter can be a source of medicine for me. Laughing helps lift my spirit and makes me feel more alive. Try to enjoy yourself while you celebrate the holidays, and be sure to include laughter in your days!

Remember The Reason For The Season

It’s so easy to get caught up in the baking, partying, shopping, decorating, etc., but that’s not really what it’s all about. If you are a religious person, keep attending church services and go to the special holiday programs. Listen to religious Christmas songs along with the pop tunes. If you aren’t particularly religious or are a nonbeliever, meditate, attend holiday community events, and enjoy finding ways to nurture your own spiritual side. Remember,

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Positive Things About Chronic Illness

Living With Chronic Illness

Note: This post contains affiliate links. I will receive a small percentage from the total purchase price at no extra cost to you.

Living with a Chronic Illness such as Fibromyalgia, Multiple Sclerosis, Lupus, Ehlers-Danlos, etc. can be a challenge. So much of your time is taken up with medical appointments, tests, daily pain and discomfort, mobility issues and more.

We sometimes forget to take time to spend on positive, “non-medical” moments. Maybe it’s because we have to look for them, rather than have them always there. Maybe it’s because we’re so tired from being ill that it’s too much effort.

I believe it’s important though, to find those good things in the day or to create moments when necessary. I’d like to share a few ideas with you today to help you fill your time with positives.

Moments

Pets

Our pets bring us so much comfort, whether you live with Chronic Pain or not. If you do live with an Illness of some sort, this is especially true. Pets seem to have a way of knowing when we need an extra cuddle or two, and they’re always there for us. I have a wonderful cat named Dorie, who loves to lay on my legs when I’m on my laptop (like right now)

Dorie my cat, sitting on my legs, and bringing comfort from Chronic Pain

I can feel my stress dissipating as soon as Dorie lays with me. It’s a tangible and therapeutic benefit of cat ownership and a wonderful feeling period. If you don’t currently own a pet, it’s something to consider.

Books

I love to read and a good book can completely transport me away from a painful day. I get so caught up in the story I’m reading that everything else fades into the background.

My personal preference for books is stories of people who have overcome challenges, especially Chronic Illness of their own. I also love autobiographies and biographies in general, and books on True Crime. Ann Rule is a favourite author in that category.

A couple of suggested books and authors I adore:

Salt In My Soul is a wonderful book about a young woman who lived with Cystic Fibrosis. Mallory’s story is both joyous and sad as she talks about being a young woman with a fatal disease. Her mom takes up the story when Mallory can’t and shares her daughter’s life and dreams.

Let’s Pretend This Never Happened is by one of my favourite author’s, Jenny Lawson. This is a true account of her life growing up with mental illness and is absolutely laugh-out-loud hilarious. I also recommend her second book, Furiously Happy as a follow up!

You can also follow Jenny on her blog site, The Bloggess

Music

Everyone has their own preferences when it comes to music that makes them feel better. I have one friend who loves to rock out to death metal and another who prefers classical music.

I find that listening to the old classics is what works best for me, to distract me from pain and discomfort. I love Led Zeppelin, Pink Floyd, Queen, Electric Light Orchestra and so many more. When I can sing along with the songs, it’s easy to put pain behind me.

Choose a gendre that suits your style, or even your particular feelings for the day. Light and upbeat or dark and moody, the goal is to move beyond pain so your focus is elsewhere. Living with Chronic Illness is never easy, so music can often be a great distraction.

Videos/TV/Movies

Living with Chronic Illness often leaves you with a lot of free time. Some people are more visual than others and find that movies and/or TV are what helps them best. With services such as Cable, Hulu, Netflix and more, there’s an endless variety of content available.

One new thing that’s all the rage is ASMR videos. ASMR stands for Autonomous Sensory Meridian Response, and is a sensation of tingling that you get in the head and spine after viewing/hearing certain sounds or sensations. Hair brushing can bring this on, along with many other stimuli.

This Wikipedia article sums up ASMR nicely and you can find many videos on YouTube to help you experience the sensation. I haven’t personally tried it yet, but if you have, I’d love to hear about it…just leave a note in the comments section.

Another way of relaxing is by sitting outside and soaking up the sounds of nature. Birds, crickets, frogs…all of these can be peaceful and induce a sense of calm in the body.

Hobbies

I am just starting a new hobby of “Paint By Numbers” and have been given this kit by a company called Winnie’s Picks. I will be doing a full review of this product at a later date, when my painting is complete, but I wanted to share with you here what a wonderful kit this is.

Inside the solid mailing tube is everything you need to complete a full size painting. There is a canvas as well as a paper copy of the painting, several different sized brushes and all the paint you can possibly need to complete the work. You do need to frame this yourself when it’s done, but everything else is there. The prices are incredibly low for the quality of product too!

There are many hobbies that you can do when you live with Chronic Illness. You want to be able to work on things that you can pick up and put down when needed, but that still give you a challenge at the same time.

Some of the best hobbies to consider are needlework, knitting, crochet, felting, colouring, painting and working with paper, such as cardmaking. You can also get into more detailed work, such as embroidery, jewelry making, candle making, soapmaking and so much more. Tell me about your hobbies in the comment section. I’m always up for learning new things!

Conclusion

I love watching the hummingbirds that come to our feeder. They bring me such joy as they sip at the nectar I’ve left for them, and I can almost feel my blood pressure going down as I observe them.

Finding ways to live with Chronic Illness doesn’t have to be difficult. We generally have everything we need for distraction in our own homes. Sure, there are days when we just feel too ill to watch a movie or play around with a hobby, but for the most part, we can use the above techniques to distract ourselves.

What sort of things do you do on a daily basis, to manage your Chronic Illness? Share with me in the comments so we can all benefit. Remember,

There Is Always Hope

There Is Always Hope

Living with Chronic Illness is an act of bravery. When each of your days is spent in pain and discomfort, it takes a lot of courage to keep going. I want to talk about hope…how to have it to get through your life and how it helps to keep a person going.

there is always hope

What is HOPE? Here is one definition I found that I think sums it up:

Hope is an optimistic state of mind that is based on an expectation of positive outcomes with respect to events and circumstances in one’s life or the world at large. As a verb, its definitions include: “expect with confidence” and “to cherish a desire with anticipation.”

Being optimistic is essential when you live with Chronic Illness, because the alternative is unacceptable. If you only see negatives, then you end up wallowing in misery and that compounds how you feel physically and mentally. I truly believe that even in the worst illnesses, there are positives to be found.

  1. You gain a better perspective of your own strengths
  2. You show more compassion for others who are struggling
  3. You understand the human condition for what it is and tend to reach out more to others
  4. Every accomplishment is a victory
  5. You find greater wisdom from those around you

Expecting with confidence is based on faith – trusting that what you want the most will come true. Realistic faith is a good thing and ridiculous faith is even better! What is ridiculous faith? It’s when you hope and pray for something which is beyond reasonable expectations, but still anticipate that miracles could happen.

Do you need Religion to have Hope? I don’t think so. It can help in many ways, as prayer can be a very comforting thing, but I don’t think it’s necessary. Many people consider themselves Spiritual rather than Religious and find comfort in ritual, nature or other traditions. Prayer may not be a part of their lives, but they still find comfort in the routines they’ve established for themselves.

I am a Christ Follower and find prayer to be essential to my well-being. It comforts me to know that I have a God who is bigger than me and who holds me in the palm of His hand. I trust that He has a plan for my life and though I may not understand it, I accept it. Acceptance on it’s own can be comforting.

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Image by Daniel Reche from Pixabay

So how does one go about growing Hope in their lives? What steps do you have to take to have faith in the things that are happening in your life, good and bad?

  1. Acknowledge your strengths. Chronic Illness can rob us of our confidence. Try making a list of all of your strengths and accomplishments. Read through the list and congratulate yourself for these positive traits. Understanding that you still have much to offer the world goes a long way in inspiring hope in the soul.
  2. Cultivate supportive relationships. As much as you can, surround yourself with supportive and caring people. People who help you to feel good and encourage you to be your best help to increase your sense of wellbeing. Having a supportive network of friends will help you to further your interests and goals. It’s much easier to find hope within a strong community as opposed to completely on your own
  3. Look at the activities and attitudes of people around you. See if any of them can serve as role models for what you would like to accomplish for yourself. Also, consider how the people around you act and make you feel. When you surround yourself with hope and success, it naturally trickles down into your own life. Like attracts like.
  4. Engage in pleasurable activities. Doing things that you enjoy can also help you to develop your sense of hope. By engaging in activities that make you happy every day, you will have a greater sense of purpose. If you are not sure about what activities bring you the most joy, try out some new things to figure it out. Take a class at your local community college, try a new exercise routine (Aqua-based activities are easy on the body), learn a new skill, or start a new hobby.
  5. Get involved with a cause. Volunteering for a cause you believe in is a great way to cultivate hope towards the future. This can be in either your local community or even an online community if mobility is an issue for you. Patient Advocacy is an area that is under-represented and working with Health Care Organizations can have a huge impact on yourself as well as others who live with Chronic Illness.
  6. Build relationships with others. When you start to build new relationships over common goals or projects, your sense of hope can greatly increase as you see results from your efforts. Involving yourself with other people who share your interests can help you to overcome alienation, which can cause a feeling of hopelessness.
  7. Get out of your comfort zone. This is essential to changing your thought patterns and learning to approach the world with more hope. Go out with friends after work instead of going straight home. Join a club or group so you can share new experiences with others. Develop a new hobby. Put yourself out there in ways that make you mildly uncomfortable at first.
  8. Keep track of your thoughts and feelings in a journal. Journaling is a great way to understand why you have been feeling hopeless and it is also a great stress reliever. To get started, buy a beautiful journal and a nice pen or pencil. Choose a comfortable place and plan to devote about 20 minutes per day to writing. Start by writing about how you are feeling, what you are thinking, or whatever else is on your mind.
  9. Try keeping a gratitude diary. Every night, think of three things you are grateful for and write them down. Doing this every day will help you to develop a more hopeful outlook and it can also help you to sleep better and enjoy better health. 
  10. Take care of yourself. Exercise, eat healthy food, get plenty of rest, and relax. By taking good care of yourself, you are sending your mind signals that you deserve to be happy and treated well which can increase your hope for the future. Make time to take care of yourself
    • Exercise to the best of your ability.
    • Eat a balanced diet of healthy foods like fruit, vegetables, whole grains, and lean proteins.
    • Get 7-9 hours of sleep per night. Use good sleep hygiene if you have trouble sleeping.
    • Set aside at least 15 minutes per day to relax. Practice yoga, do deep breathing exercises, or meditate.
    • Stay hydrated
    • Go for a massage or have body work such as Reiki to help balance you.
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Hope doesn’t have to be a fleeting thing…it can be a strong and deciding factor in your day to day life. I live every day with the hope it will be a good day. Positivity goes a long way in making me feel better physically, mentally and spiritually. I’m realistic about what I am and am not able to do, but I never give up hope that things will be better. It’s all about attitude and choosing how you want to feel.

I hope these ideas and suggestions are useful for you. I named my blog There Is Always Hope because I truly believe that statement. Even in the worst of our moments, I believe there is always a tiny light burning bright for us. We just have to look for it. Sometimes that means stepping out of our comfort zone and doing something we never thought we were capable of, but if we can overcome our fear, we may be surprised as to what we find.

And so I end this post as I always do and I mean it even more today…

There Is Always Hope

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Interview October – Elisa Austin

Today we meet my final guest for Interview October, the wonderful Elisa Austin. Please join me in welcoming her!

Introduce yourself and tell us a bit about you…

I am a 50 year old, mother of eight and grandmother. I’m a photographer and writer.

One fascinating fact about me is:

I am still existing. 

Chronic illness(es)/disabilities I have… 

I have underactive thyroid (Hashimoto’s), Fibromyalgia, and IBS

My symptoms/condition began…

The thyroid condition was diagnosed in 1999 because I was just “off” and “dragging.” Fibromyalgia was diagnosed in 2004 although I believe symptoms began earlier.

My diagnosis process was… 

My doctor ruled out most things with blood tests and sent me to a rheumatologist. The rheumatologist ruled out RA and by process of elimination Fibromyalgia was diagnosed.

The hardest part of living with my illness/disabilities is…

Knowing there is no cure and I will have to deal with the pain every day for the rest of my life.

A typical day for me involves…

Medication, necessary appointments or activities, and with luck some housework.

The one thing I cannot live without is…

It rotates through warm baths, heating pads, aromatherapy, family, exercise

Being ill/disabled has taught me…

That I’m stronger and more determined than I had originally thought. 

My support system is…

My family and an online group

If I had one day symptom/disability-free I would…

I don’t even know. I no longer make plans or have dreams.

One positive of having a chronic illness/disability is…

I am more supportive of others

One final thing I want people to know is: 

I refuse to give up.

Interview October – Shantay Marsh Thompson

I have another great interview to share with you today…please meet Shantay Marsh Thompson!

Introduce yourself and tell us a bit about you…

My name is Shantay Marsh Thompson, and I am 42 years old. I have two grown kids that are working, and one is in college. I spend my time taking online classes since I am not able to work. I spend my time in the house the majority of the time because walking too much makes my back hurt. I do not go to stores to shop. I shop online or if it is something personal that I need, I will go to Dollar General so I can get in and out. My mother does the grocery shopping for me. 

One fascinating fact about me is:

That even though I am down with this illness, I continue to learn academically.  

Chronic illness(es)/disabilities I have…

I have Fibromyalgia with chronic back pain, depression, Neuralgia, Arthralgia, and Dyslipidemia. The pain in my back is worse. I have trouble sitting and standing for long periods.

My symptoms/condition began…

In 2013 after being diagnosed with endometriosis. After I had my procedure, I started hurting badly after a month. I went back to my gynecologist and asked him to please give me a hysterectomy because I needed to work. I had to wait four months before I could get the hysterectomy, so I continued to work in pain. After I had my hysterectomy in 2014, the pain was still there. I worked for about a month then had to quit my job because I could not stand nor sit for long periods. 

My diagnosis process was… 

Terrible. I went through several doctors in Tuscaloosa, AL. Nobody would give me the help that I needed. I cried every day because my pain was so bad. The medicine they gave me, such as Tramadol did not do anything for me. I had to move back to Mobile County to find me a doctor that could help me. I found one, and he gave me some medicine that would help me reduce the pain some. It was June 2015 before I got a diagnosis.

The hardest part of living with my illness/disabilities is…

Dealing with the pain in my back. I have tried Fibromyalgia lotions and nothing seems to work good.

A typical day for me involves…

Laying in my bed watching tv or doing some schoolwork. I make myself go to the gym to at least once a week to do strength training and walking but I pay for it the next day. 

The one thing I cannot live without is…

My Lyrica. I have bad nerve pain so I take Lyrica. After my daughter turned 19 in April, my medicaid ended so I had to go without Lyrica for some weeks and I was in pain. 

Being ill/disabled has taught me…

How to appreciate life more and do not take anything for granted. I have worked since I graduated in 1995 and I never thought my working career would end in 2014.  

My support system is…

My one friend, my family, my fiancé, my church family, and the  FIBRO CONNECT Group.  

If I had one day symptom/disability-free I would…

Get out the house and treat myself. 

One positive of having a chronic illness/disability is…

Being thankful that it is not a deadly illness.

One final thing I want people to know is: 

Fibromyalgia is real. I would not wish this pain on no one.

My Links

https://www.facebook.com/Health-Wellness-108684490547162/?view_public_for=108684490547162

Interview October – Jennifer Van Haitsma

I’m excited to share my next guest’s story with you…please meet Jennifer Van Haitsma!

Introduce yourself and tell us a bit about you…

Hi! My name is Jennifer Van Haitsma, the writer behind the blog Diffusing the Tension. I am 33 and I live in Northwest Indiana (about an hour from Chicago). I’m married to my love of 14 years, and we have 2 amazing children. (They are 4.5 and 2.5). In my spare time, I love to watch TV. I’m an avid binge watcher when I can. I especially love British period dramas, procedurals, and true crime documentaries. I also love to read. My goal is to read 35 books this year. I try to workout several days a week as well. 

One fascinating fact about me is:

I am terrified of heights. It is strange because I am not afraid of rollercoasters or airplane rides, but any other situation involving heights petrifies me. 

Chronic illness(es)/disabilities I have…

I live with bipolar disorder and chronic fatigue. Originally, I was diagnosed with depression, but my diagnosis changed about 10 years ago. 

My symptoms/condition began…

I began to exhibit symptoms of depression when I was 9 years old. I was a little more withdrawn at school and acted out a bit more at home, from what I can remember. 

My diagnosis process was… 

When I was 12 or 13 my mom took my to my first therapist. I remember not even wanting to talk to her at first. I had a lot of anger after my cousin’s death in 1995 (when my symptoms started) and really didn’t want to let a stranger climb the walls I had built inside. But ultimately, I was diagnosed with depression. In 2009, at age 23, I began to exhibit symptoms of mania (hyper productivity, irritability, and sabotaging relationships.) I sought treatment again, and in 2010 I was labeled bipolar 2 with rapid cycling mixed episodes. 

The hardest part of living with my illness/disabilities is…

Definitely the effects it has on those around me. I sometimes lose my patience when it’s not necessary, and take it out on my husband and children, which makes me feel deeply ashamed. Another incredibly hard part is the fatigue. I am so tired that it is hard to stay awake past 7:30pm. 

A typical day for me involves…

Taking the day an hour at a time. I make the kids breakfast, then we do whatever we can to pass the time until lunch, etc. My fatigue makes it hard to stick to a schedule with them currently, as I often need to lie down for prolonged periods of time. 

The one thing I cannot live without is…

My phone! It is where I store my pictures, others’ phone numbers, others’ address, where I get my entertainment, where I keep my to do lists… My phone is the central hub of my daily activity. 

Being ill/disabled has taught me…

It had taught me resilience in a way that nothing else could. I have had to learn that each day is a fresh start, and it is possible to make the most of my situation. It has also taught me the power of speaking about my journey so that I can help others through theirs. 

My support system is…

My biggest supporters are my husband and parents. My husband is my best friend, and he is always patient with me when my illness gets bad, and always stays by my side. My parents provide a lot of support where my husband can’t. The girls get a lot of play time with their grandmas during the day when he is working and I need the help. 

If I had one day symptom/disability-free I would…

It’s funny how hard it is to imagine myself without my illness! I think I would get in a long workout and then spend the day doing fun things with the girls. Maybe a trip to the zoo or a local amusement park, if the weather was good. 

One positive of having a chronic illness/disability is…

It helps you have more empathy for others who struggle. Before my diagnosis, I’m sure I often looked down on people with chronic illness. Now, I know they are just that: people. 

One final thing I want people to know is:

I am not my illness. I am so much more than just bipolar. I am a wife, a mom, a bookworm, a TV addict, a fitness nut, a friend, a sister, a daughter, a person. 

My links are:

Blog: www.diffusingthetension.com

Twitter: www.twitter.com/jvan3610

Facebook: www.facebook.com/diffusingthetension

Instagram: www.instagram.com/diffusing_the_tension

Pinterest: www.pinterest.com/diffusingthetensionblog

Interview October – Jamie Pirtle

It’s time to meet my next guest, the lovely Jamie Pirtle. Enjoy her story!

Introduce yourself and tell us a bit about you…


I was born blind in one eye and with a condition called nystagmus, where my eyes continually move.  The doctors are not sure why, but have suspicions that it could be because my mom smoked and had mono while pregnant.  

I grew up in the south eating meat, potatoes, gravy and biscuits almost every meal. My way of eating was pretty much carbs, carbs and more carbs. A meal without a potato was pretty much a sin.

As a teen, I started to eat junk food, including diet coke and snickers for lunch and the diagnoses started coming in during my late 20’s. 

Conditions you have been diagnosed with:

  • Mitral Valve Prolapse
  • High Cholesterol
  • Arthritis (in remission)
  • IBS 
  • Lupus (in remission)
  • Ankylosing spondylitis (in remission)
  • Endometriosis (had hysterectomy)
  • Thyroid cancer (removed and now take meds)

I can remember staying in the bed all day one Mother’s Day crying because I couldn’t play with my 2-year-old daughter or go see my mom.  The pain and unpredictable bowel movements were just too much.  

I didn’t get to take vacation from work because I used all my time off going to specialist and staying home sick.

I can’t wait to hear about YOUR progress!

At about age 49, I started following a health coach on Facebook and listening to him talk about how what we eat results in autoimmune diseases.  This coupled with returning from a cruise so sick I missed another week of work, I decided I had to do something 

I first went gluten free and started eliminating junk food and diet cokes. Next, I cut out all aspartame, high fructose corn syrup and most fried foods. This helped, but there was still something missing. 

Then I was diagnosed with thyroid cancer. When you hear these dreaded words, your world stops.  I remember sitting in the parking lot of the doctor’s office talking to my husband on the phone and saying, I have to figure out what is causing this. 

I started studying everything I could get my hands on and decided the only way to go was to eat whole, mostly organic foods. I also cut out as many carbs as I could and cut way back on sugar. 

After improving my lifestyle, I feel SO much better in my 50’s than I ever did in my 30’s and 40’s. I went from taking 9, yes NINE daily prescriptions to just ONE (my necessary thyroid medicine) and eliminated the pain associated with several autoimmune diseases.

One fascinating fact about me is:

I went back to school at age 53 and became a certified health coach so I can help others get healthy and not have to live in pain like I did.  I also beat cancer and plan to stay cancer free! 

My symptoms/condition began…

In my late 20’s. (born with the eyes) 

My diagnosis process was… 

Long and tedious. The doctors just kept telling me I was too stressed at work and I needed to learn to relax. I also knew something was wrong with my thyroid and it took almost 2 years for doctors to finally find the cancer after I insisted on a sonogram and biopsy. 

The hardest part of living with my illness/disabilities is…

People think I am ignoring them when I cannot see them out of my bad eye or they think I’m drunk or high as my eyes move. When I was in school the teachers thought I was day dreaming because it was easier for me to focus on them by turning my head and creating a null point that made my eyes stop moving. It is also hard to do fun activities like bowling due to some joint pain from time to time. 

A typical day for me involves…

Eating healthy and making sure I drink lots of water, take my supplements, use essential oils and remember the food makes a HUGE difference in how I feel. I work a demanding manager job with a large aero defense company and have a side gig as a heath coach and blogger. 

The one thing I cannot live without is…

My glasses for sure!  But also, healthy foods and supplements – I take lots of supplements. 

Being ill/disabled has taught me…

That life is precious and we really are what we eat.  I have also learned not to push myself and to try to destress as much as possible. 

My support system is…

My husband, family and friends.  I have also found joy now in my health coaching clients.  It is such a great feeling to see them losing weight and regaining energy. 

If I had one day symptom/disability-free I would…

Go watch a 3D movie! They don’t work for me with my bad eyes.  

One positive of having a chronic illness/disability is…

It has made me strong and made me a lifelong learner.  I can no longer rely on others to make medical decisions for me and research everything a doctor tells me. 

One final thing I want people to know is:

Food is a HUGE factor in your health and how you feel. Unfortunately, many doctors want to give you a pill and not educate you on the importance of good nutrition. 

My links are: 

Healthywithjamie.com

https://m.facebook.com/healthywithjamie/

https://www.instagram.com/healthywithjamie1/

https://www.facebook.com/groups/2109386845847472/?ref=share

https://www.linkedin.com/in/jamiehyatt1

Free recipe book with 23 gluten free and Keto friendly healthy recipes: 

https://healthywithjamie.com/free-recipe-book/#

Interview October – Jenny Jones

I’m delighted to introduce my next guest to you. This is Jenny Jones and here is her story:

Introduce yourself and tell us a bit about you…

I’m Jenny and I share my story of rare disease and chronic illness on my blog Life’s a Polyp. I have a Master’s in Social Work and provide behavioural health services to dialysis patients. 

One fascinating fact about me is:

 I started a research fund through National Organization for Rare Disorders (NORD) for the rare disease of Familial Adenomatous Polyposis (FAP). Life’s a Polyp shop has several designs across a variety of merchandise that helps to raise awareness of rare disease but also supports the FAP Research Fund through NORD.

Chronic illness(es)/disabilities I have…

I have two rare diseases – Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). FAP is a hereditary, rare disease that causes 100s to 1000s of pre-cancerous polyps to develop in the colon as well as extracolonic manifestations. SBS results when too much of the colon and even the small intestine is damaged or removed resulting in malabsorption of nutrients and fluids that is often complicated by severe diarrhea and dehydration.

My symptoms/condition began…

FAP is a genetic disease that I was born with but I also developed Short Bowel Syndrome due to my colon and part of my small intestine being removed as part of my treatment for FAP.

My diagnosis process was… 

I was diagnosed when I was about 8 years old after having stomach pain from a pre-ulcerous condition which led my GI doctor to complete genetic testing due to my family history of FAP. It was difficult to obtain a referral to a GI doctor as my PCP told my parents I was “just a whiny child” and nothing was wrong with me.

The hardest part of living with my illness/disabilities is…

Never knowing what the day will be like or what the future will be. Working to be able to support myself is my primary goal in life and the best physical health years of my life are behind me now. I am terrified of the day that I will no longer be able to work and support myself. 

A typical day for me involves…

I work full time – 5 days a week but after work and on the weekends I require a lot of resting time to recuperate from the work week so that I may work the next week. Sometimes I enjoy outings with friends and family but I have to balance all of my activities with rest periods in order to continue functioning.

The one thing I cannot live without is…

My parents – they are my foundation and support in life. They help keep me going while providing assistance as needed to care for myself. I would be lost without them. 

Being ill/disabled has taught me…

 The importance of taking physical and emotional care of myself and advocating for myself so that I may continue to maintain optimal functioning ability.

My support system is…

My parents and a few select friends make up my support system. I also receive encouragement from online groups for FAP and SBS.

If I had one day symptom/disability-free I would…

Probably spend the day engaging in all the activities I typically am unable to complete or am leery about completing due to my SBS symptoms.

One positive of having a chronic illness/disability is…

Chronic illness teaches us perseverance and empathy – both qualities that are important in caring for ourselves and understanding others.

One final thing I want people to know is: 

Chronic illness is hard to live with – both physically and psychologically. Counseling can be a key component of learning to accept and cope with chronic illness in a healthy way. It is also essential to be proactive in one’s care to ensure the best treatment possible from all medical providers.

My links are:

www.LifesaPolyp.BlogSpot.com

www.Youtube.com/LifesaPolyp

www.cafepress.com/lifesapolyp

www.facebook.com/lifesapolyp

www.twitter.com/lifesapolyp

www.instagram.com/lifesapolyp

www.pinterest.com/lifesapolyp

Interview October – Aleisha Crabb

It’s time to introduce my next guest, the vibrant Miss Aleisha Crabb. I’m delighted to share her story here!

Introduce yourself and tell us a bit about you…

My name is Aleisha & I live in Canberra, Australia. I was born in a country town in New South Wales called Dubbo & my parents moved to Canberra when I was 1 year old.

I am a Nurse, and I work in Drug & Alcohol. My work has given me an amazing insight into human nature, and the complexities surrounding chronic pain, opioid use & addictions. I absolutely love my job & cannot imagine working anywhere better considering my own life experience of chronic pain.

One fascinating fact about me is:

I have a ridiculous good memory for movie/TV show quotes. I remember the most bizarrely un-memorable lines from movies & shows, haha. 

Chronic illness(es)/disabilities I have…

  • Psoriatic Arthritis (with associated Enthesitis & Bursitis)
  • Osteoarthritis
  • Sleep Apnea
  • Polycystic Ovary Syndrome
  • Idiopathic Intercranial Hypertension
  • Trigeminal Neuralgia
  • Generalised Anxiety Disorder

My symptoms/condition began…

I injured my knee in my first year of nursing. That injury seems to have been the catalyst for triggering the onslaught of my Psoriatic Arthritis.

My diagnosis process was…

Tedious. The GP I was seeing when I first injured my knee was what I now know to be quite lazy, and was very disinterested in holistic care.

It took a very long time for him to refer me to a Rheumatologist, but when I eventually was, I was triaged as urgent & was seen in weeks. Some people have had to wait over 12 months to get into them, so for that I am very grateful.

From there I was diagnosed first as Undifferentiated Spondyloarthropathy, and as my symptoms progressed, and more specific symptoms presented, I was eventually diagnosed with Psoriatic Arthritis.

The majority of my other conditions were more easily & quickly diagnosed.

The hardest part of living with my illness/disabilities is…

The fatigue. Pain is something I have learned to manage, but the severely depleted energy levels is not something I have ever been able to successfully become accustomed to.

A typical day for me involves…

  • Wake up around 730am.
  • Medication and breakfast (if I am feeling up to it, sometimes I am too tired/nauseous).
  • Feed the cat. He will look at me forlornly (and disdainfully) if I don’t 😉
  • Work is from 9am – 530pm. (I have had my start time adjusted to 9am from 830am so that I am able to manage morning stiffness from my PsA. This gives me an extra 1hour at home due to peak hour traffic!)
  • Home for dinner around 6pm. Sometimes I have cooked something, othertimes it is takeaway or a pre-delivered meal service like Lite & Easy.
  • Medications around 7pm as one is to prepare for sleep.
  • Bed at 9pm after a shower usually. I do a nighttime meditation to help sleep.

The one thing I cannot live without is…

 My cat. He is my ever present comfort, amusement & joy throughout the trials & tribulations of chronic illness. 

Being ill/disabled has taught me…

To slow down & enjoy life. I am so relaxed about life & what I am able to enjoy now.

My support system is…

My family & close friends. They are essential to my emotional wellbeing 😊 

If I had one day symptom/disability-free I would…

Walk up a mountain to have a picnic, visit a remote Indigenous site in Australia that requires lots of walking to access & camp under the stars without my CPAP machine! 

One positive of having a chronic illness/disability is…

The people I have connected with as a result 😊 . The connections I have made since becoming chronically ill have become incredibly important and special to me, and I have made some lifelong friends.

Having people in your life who understand the difficulties associated with chronic illnesses and disabilities, can relate to the challenges and frustrations you face every day and truly care about your wellbeing can never be underestimated.

One final thing I want people to know is:

Its OK not to be OK.

The biggest challenge for me has been slowing down & how difficult that has been at times. I was always an active person before I became unwell; always taking on lots of challenges. Now, I have to drastically limit my activities in any given day as overactivity can bring on severe flares. This was a huge change for me & emotionally I was quite overwhelmed & became very anxious.

I want all people to know it is ALWAYS OK to tell others that they need more support if they are finding the emotional toll of their chronic illness/disabilities too hard to manage on their own.

My links are:

https://acrabbycripple.wordpress.com/

Interview October – Keiran Potter

It’s time to meet my next guest, the fabulous Keiran Potter! I’m excited about what he has to share!

Keiran Potter

Introduce yourself and tell us a bit about you…

Hello, my name is Keiran Potter, I am 21 years old and I am from the South West of England. I am currently studying English Literature and Creative Writing at University and hope to pursue a career as a writer if all goes to plan. But you know what they say, best laid plans of mice and men often go awry. 

One fascinating fact about me is:

Not sure how fascinating any of my facts are but I am 22 this month and still often get mistaken for a 12 year old at my local shops. Oh and I’m gay, not fascinating but definitely a fact. 

Chronic illness(es)/disabilities I have…

Celiac Disease and Various Mental Health problems but for the sake of this interview I’ll focus on the former

My symptoms/condition began…

The symptoms of Celiac were present for an awful long time before I recognised them as something that could be potentially sinister. The stomach pain, migraines and bleeding had been such a regular thing for me, that it became the norm and I failed to question it for a long time. So I’d say as long as I remember I have had the issue but it wasn’t further explored until May 2018 

My diagnosis process was… 

 I had to have blood tests and several other samples. Celiac Disease can share some symptoms with other serious conditions like intestinal cancers, so my doctor was pretty concerned. Once they came back I got referred to a specialist on a 9 month waiting list. In the interim they told me to research about Celiac Disease and cut out Gluten from my diet. They failed to tell me that by doing this it would also put other aspects of my health at risk. Such as my heart. 

When I was referred I was then asked to eat Gluten again after being gluten-free for 9 months, in order to have an upper endoscopy and biopsy of my intestines. 

So all of my symptoms got more aggressive and I was in constant pain as my body had began healing in the 9 months that I had known about my potential diagnosis 

The first biopsy was inconclusive. I had to wait another 3 months and get another one done. It was quite a hellish experience to be honest but I finally got the 100% confirmation of the disease. Which in many ways was a blessing as I finally had some answers 

The hardest part of living with my illness/disabilities is…

The constant vigilance and endless fatigue and stomach pain. Even when doing everything you should be doing. Sometimes you have issues for no apparent reason and there is literally no answer to appease your concerns or pain. 

A typical day for me involves…

 A lot of thinking ahead about the risks of everyday living. Such as eating or spending the day out of the house in an unfamiliar place. A lot of time spent on or near a toilet. University, I study English and Creative Writing. Lots of medication but thankfully a lot of laughs 

The one thing I cannot live without is…

 Not really a thing but my support system and the people who help and love me the most. I quite literally would not be alive if it wasn’t for them. 

Being ill/disabled has taught me…

To value every aspect of your life for what it is. You never know when those simple joys may be taken from you. It has also made me more appreciative of health in general. Our bodies are not as indestructible as we may like to think sometimes  

My support system is…

My Family, my mum specifically. I don’t think I would show up to half of the appointments I have if it wasn’t for her dragging me there by the ear. I’m very grateful for all the help and care she gives me 

If I had one day symptom/disability-free I would…

 Eat some Chinese food and go do something productive and just enjoy the day without the illness. I would take advantage of some of the freedoms that I feel I don’t have as much access too since my illnesses have truly taken a hold on my life

One positive of having a chronic illness/disability is…

I think one positive is how you can then use your knowledge of your own body and conditions to educate and help others. There is also a sense of community instantly when you find people who struggle with the same illnesses and experiences. It’s important that all voices are heard, so I’m glad interviews like this amplify the voices of disabled or chronically ill people. 

One final thing I want people to know is:

 Only because a person may not look ill, it doesn’t mean they are not struggling everyday to live their life as normally as possible. Always be kind to everyone you meet as even if you can’t physically see it, that person could be in pain and/ or mental strife. A smile could always brighten up their day 

My links are:

Https://KeiranCrying.com/blog

Instagram.com/keirancrying