Tag: #selfcare

Living with Autoimmune Disease: Part 2

Posted on by Dr. Elaine

Living Your Best Life: Reducing Stress – Relieving Symptoms

photo of woman holding her head
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Having been diagnosed with an autoimmune disease, or any other chronic disease, if you are like me, the next step is to figure out how to live your best life.  Our quality of life is rarely thought about until something changes that quality.  For me, the substantial change was not having the energy to do all I wanted and to find a way to deal with the relentless, generalized pain (feeling like I am coming down with the flu). 

You can take one of the numerous routes available to help you live the life you want, feel better, and be happy despite autoimmune disease(s), or other chronic illnesses.  There is no ‘one size fits all’ when it comes to our health and achieving our goals.  In this article I am touching on one possibility: HeartMath (TM).

HeartMath (TM)

I don’t remember how I discovered HeartMath (TM), but I am grateful I did. I have been practicing HeartMath (TM)  for several years and have found it beneficial to my physical, emotional, and mental well-being.

Being diagnosed with an autoimmune disease was not the reason I started practicing HeartMath techniques.  I became a Certified HeartMath Mentor and Coach to help myself and others enhance their health and relieve stress.  I have gotten valuable information and recently decided that sharing this information with those who have autoimmune diseases is long overdue.  HeartMath helps us manage stress. Remember, stress can worsen the symptoms of autoimmune diseases.

What is Stress?

We all have stress; it is something we experience every day.  We have big stressors i.e. illness, death, debt, and divorce that lead to negative emotions.  But happy, positive events can also be stressful i.e. weddings, birthday parties, graduation, a new job, or other celebrations.   The body doesn’t differentiate between big stress or little stress, or between happy stress, or troublesome stress.  We experience stress many times during the day, and it all begins with a flow of 1400 biochemical events in our body.  We don’t notice most of these because we get used to them e.g. traffic on the way to work, that one annoying person in the office, or the kids being kids.  For me, technology problems often start me on a path of frustration (an indicator of stress), which often leads to anger (another indicator of stress).  Stress takes a toll on your immune system, so take time to learn how to manage your stress – at least most of the time.  Even if you don’t think you have much stress in your life, chances are you can decrease the negative effects on your body by practicing some simple techniques to put you in control.  Unchecked stress will age you prematurely, your cognitive function will become impaired, your energy will be drained (I don’t need anything that drains my energy), and you will become less effective, and your clarity of thought will be impaired (https://www.heartmath.com/blog/health-and-wellness/how-stress-affects-the-body/

Effects of Unchecked Stress

premature aging

impaired cognitive function

decrease energy

impaired thought processes

Ideally, we will manage stress in the moment.  There are techniques available to help with this.  One that I especially like is Heart-Focused-Breathing and The Quick Coherence Technique(R).  This is a simple technique that can be done anywhere, anytime. I recommend doing this twice a day, but initially do it more often so that it becomes an automatic response to stressful situations. Sometimes, I didn’t think this was doing much good, then I would miss a day and that was when I would notice the difference.

Identifying our stressors can be difficult because we have learned to just live with them. If you need additional work to uncover your stressors check out HeartMath’s Depletion to Renewal Grid(R) which is a good way to determine where your stress level is at any given time.  For starters, I suggest you plot your stress one or more times a day for about a week – but longer if you would like.  The goal is to be as close to centre as possible. However, remember that our lives are constantly changing and we want to embrace all the changes and ups and downs. We want to know that we can handle the tough parts as well as the up times.

If you are someone who meditates keep it up.  The HeartMath(TM) experience is a bit different and you might want to do both. You don’t need to be on your own or in a quiet place to do Heart-Focused-Breathing(R). Take time to find ways to relax and restore your energy.

Self-Care

a woman with peebles on her back lying on white bed
Photo by Tima Miroshnichenko on Pexels.com

Self-care is not selfish; it is a must for health and well-being.  If you are like me, you ignored self-care for many years by working hard, taking on more, and helping others, because you thought that was what you were supposed to do, or maybe a bit of FOMO (fear of missing out).  But by not taking care of yourself you eventually wear out and are forced to slow down.  That is something our autoimmune diseases have done to us – forced us to slow down. I was stubborn and didn’t slow down enough, or take the best care of myself until I developed cancer. By the time cancer set in I didn’t have a choice, I couldn’t do much, let alone too much.

Self-care involves nutrition, activity, sleep, managing your stress, having a support system, and embracing your spirituality.  Self-care means looking after all of you.  We cannot separate our physical, mental, emotional, and spiritual health – what happens to one affects all the others.  This might sound overwhelming.  You do not have to make big changes all at once.  Start slow, with small changes, and keep going.  You want to do what you need and be successful.  With each success, you can celebrate and take the next step.  Don’t let yourself become overwhelmed.  Overwhelm can come on unexpectedly as we try to make changes to improve our health. 

Make a point of taking some time for you every day.  A few minutes of breathwork with the Quick Coherence Technique and Heart-Focused-Breathing can be good place to start. But if that doesn’t work for you find something that does work for you.

I found this “Self-Care Menu”. Give a few of these things a try during the week or the weekend. The suggestions are good for anyone, any time.

What’s Next

Watch for more blogs about other things you can try to live a better life, despite autoimmune disease.  One step at a time, one day at a time.  You deserve to be well and to have a beautiful life.   Check out some of the Resources on my website for more information and options for improving your health.

You are in control!

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Living with Autoimmune Disease(s)

Posted on by Dr. Elaine

My Story

woman spreading both her arms
Photo by Lucas Pezeta on Pexels.com

In 2013 I was diagnosed with an autoimmune disease, Primary Biliary Cholangitis.  I had been feeling unwell for a couple of years to the point I was afraid I was going to die without knowing what was wrong with me.  Now, years later, I am alive and learning to cope.  Though, I have my ups and downs.

Because of the difficulty getting a diagnosis and adapting to the changes in my health and my quality of life, I am sharing my story, as much as I remember of it, and hopefully will help others as they learn to live with autoimmune disease(s). I am not seeking sympathy or pity, but I seek understanding and want to share the knowledge I have gained. I want to be able to help others.

I am not an expert on autoimmune diseases.  I don’t know about all of them.  I know a little bit about the two I have and a little bit about some of the others.  Nonetheless, I know how I feel, and I am guessing many people have similar frustrations and symptoms.  By sharing I hope to alleviate some of the existing frustration, pain, and misunderstanding.

What is Autoimmune Disease?

The causes of autoimmune disease are not well understood. Our immune system, which is supposed to protect us against disease, goes haywire and attacks healthy cells instead of unwanted viruses and bacteria. A dysfunctional immune system is the basis of all autoimmune diseases despite their many differences.

With over 80 identified autoimmune diseases having been identified by scientists I am not going to attempt to cover them all. Some with which you may be more familiar include:

  • Type 1 Diabetes
  • Rheumatoid Arthritis
  • Multiple Sclerosis
  • Lupus
  • Inflammatory Bowel Disease
  • Hashimoto’s Disease
  • Grave’s Disease
  • Psoriasis

I have been diagnosed with Primary Biliary Cholangitis and Sjogren’s, and also have symptoms of Reynaud’s, which also might be an autoimmune disease. Having more than one autoimmune disease is not uncommon, as 25 percent of patients with autoimmune disease have more than one.

My Story

Me

                Symptoms and Diagnoses

One site I visited states that those living with autoimmune disease often feel alone with their disease.  Though support is often there initially and when a crisis occurs and hospitalization results, the support eventually fades.  This makes sense, as the symptoms and the illness does not go away.  I sometimes find it hard to cope, how can others?

Until I started to feel unwell, I had been very active: work, school, gym, community, family, and socializing. Though I had frequent respiratory infections I tended to work through those and carry on as though nothing was wrong.  At about 60 I started to feel exhausted.  No amount of sleep and rest would eliminate the extreme fatigue. I was working full-time teaching nursing and working on my doctorate. Working full-time and going to school was not unusual, I had been doing this for 20 – 30 years so it was not new. After a full day at the bedside with my students, I needed two to three days to recover from the extreme fatigue I was feeling. I also found I was getting even more respiratory infections, and they were lasting longer.  Overall, I felt unwell with numerous little things like sore, dry eyes, muscular pain, unrelated to my workouts, and general aches, but the exact cause eluded me.

I have a history of depression going back to my teens.  When I consulted my family doctor it was suggested that I was burned out or I was depressed.  What I was feeling was not like any depression I had ever had in the past. Maybe I was burned out, but I didn’t think so. As recommended by my doctor I took time off work and saw a psychologist. I started to feel a bit better. Then I returned to work, and at the suggestion of my psychologist got a personal trainer. I loved going to the gym, and always have.  But it seemed so much harder than ever before. I soon found I wasn’t recovering between workouts, and my Personal Trainer insisted on longer stretches between workouts.  My health deteriorated and I needed more time off work.  My extreme fatigue and general feeling of being unwell was creating havoc with my job, I knew I wasn’t at my best, and in my home life.  I often didn’t have the energy to accompany my husband to events.  Though I didn’t feel I was depressed, I was well on my way to being depressed.

I can’t remember the details, but there was some confusion, and a consult was arranged with a hepatologist was organized, which became a blessing.  Someone had thought I had hepatitis thus, I got scheduled to see the specialist and as we talked, she realized I did not have hepatitis but likely had an autoimmune disease and ran the necessary tests.  Results came back confirming Primary Biliary Cholangitis.  I got started on appropriate medication.  I was very relieved to have a diagnosis.  However, I had a lot to learn. 

The dry eyes and mouth were a nuisance, the itching was torture, and the fatigue was overwhelming.  I had trouble adapting but was happy to know I was not crazy or dying.  I could no longer work full-time as I would end up ill.  Adjusting to not working was emotionally very difficult.  I loved nursing and teaching and had hoped to continue into my 70s.  Alas, that was not to be the case. 

Life continued. In 2019 I was diagnosed with a couple of cancers and needed surgery and chemotherapy.  Shortly after my chemotherapy was completed (2020), I developed chest pain, thinking I was having a heart attack I went to emergency.  As it turned out I was not having a heart attack, but I had peri-carditis.  A brilliant cardiology fellow tested me for Sjogren’s, another autoimmune disease.  People with Sjogren’s sometimes develop pericarditis.  The symptoms of Sjogren’s are similar to Primary Biliary Cholangitis (PBC), dry eyes and mouth, itching, fatigue, and muscle and joint pain.  Off to another specialist and treatment was begun. 

                My Journey and Quality of Life

I had a great deal of difficulty adjusting to the slowing down.  I could no longer take care of my home and yard to my liking.  Every time I started an exercise routine, I would end up exhausted and in pain.  It would take me anywhere from a few days to a week to recover.  Then I would try again.  And the same thing would happen.  My doctors recommended exercise, and I know it is important, so I kept trying.  

potatoes beside stainless steel cooking pot
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My quality of life had deteriorated.  I could no longer socialize the way my husband and I both enjoyed.  I remember cooking Christmas dinner for the family and ending up so tired and in such pain that I was not able to join the family to eat.  I was on the sofa in pain.  Of course, my grown children and husband had helped, but it was still too much.  Vacations became a problem because once again I was too exhausted to do all the things we enjoyed, just the travel part required a few days to recover. 

We hired help for the house and yard.  We are so fortunate to be able to afford to do that, not everyone is so lucky.  But I especially missed the time in my yard and the socializing that we enjoyed.  Despite getting help with these things there was still a lot of adjusting and many days spent in pain feeling exhausted.  Dinner out with friends often ended early for me.

I chatted with my family doctor and got a referral for mental health support to help me adjust to what needed to be my new way of life.  This was helpful, but I still struggle with wanting to do more and suffering the consequences when I do too much.

I continue to struggle with feeling lazy, though I know I’m really not, and that I am doing the best I can with what I have at the moment.  Some days I get lots done, but that usually results in a few days of pain and extreme fatigue.  But I also know that is a choice I have made.

                Changes to How I Live

There are probably more changes than I remember.  Most significant is having to retire and not being able to have the social life with my husband that we had enjoyed for so long.

I miss my work.  I loved being a nurse and I loved teaching nursing.  My interaction with patients and students was a highlight of my career.

Israel 2018

My husband and I continue to socialize but not as much as we once did.  I find travel very painful, and it causes my husband a lot of emotional pain as he sees my discomfort.  However, we are adjusting.  And again – some days are better than others.  Nonetheless, I remain grateful to be alive, to have a wonderful husband and family to support and care for me, and to be able to enjoy my home and dog. Yes, I have had to slow down, life has changed, but for me, it is better than the alternative.

Though many people are able to carry on and achieve their life goals I have not found that.  I also know that I am better off than many others.  Though my symptoms vary from day-to-day I am able to function quite well with some planning.  I have learned more about self-care and what that really means – a healthy diet; adequate, good quality sleep; regular activity; and social and emotional support.

I do life, wellness, and leadership coaching. I have immersed myself in learning about essential oils and aromatherapy.  I have been on a spiritual journey and have learned about myself.  I enjoy my periods of meditation and have found comfort in repeating affirmations.  I have come to realize the importance of positive self-talk and training the brain.  Neuroplasticity is another area that I have delved into and found very helpful.

One of the first things I did following my diagnosis was embark on learning about HeartMath.  I am a certified coach, but most importantly my practice has helped me learn how to maximize my energy and make the most of a variety of daily situations.  We all have different experiences in life and each of us needs to find what works for us – one size does not fit all.  But I do encourage you to be curious and find what works best for you.

Treatments

Obviously, with so many different autoimmune diseases there are oodles of treatments.  Seek medical guidance and seek out support groups.  There is a great deal to learn.  Regardless of medical treatments, self-care, including nutrition, sleep, activity, and mental and emotional care remain important.

Don’t hesitate to seek out alternative therapies and treatments.  Do what is important to you.  Massage, exercise, aromatherapy, yoga, acupuncture, and changes to your diet, are all possible areas you might want to examine.  

You might be prescribed medications and need numerous over-the-counter (OTC) medications to cope with a variety of symptoms.  Discuss medications with your healthcare team.  Make sure that what you choose for medications, treatments, and care will not cause harm.  Be safe in your self-care.

Resources

These are just a few resources to get you started.  Don’t hesitate to search for your specific disease.

If you would like more guidance and support, contact me via my website: www.leadnurses.com

Autoimmune Association: https://autoimmune.org/disease-information/

Global Autoimmune Institute: https://www.autoimmuneinstitute.org/

Johns Hopkins: https://www.hopkinsmedicine.org/health/wellness-and-prevention/what-are-common-symptoms-of-autoimmune-disease

National Institute of Environmental Health Sciences: https://www.niehs.nih.gov/health/topics/conditions/autoimmune

National Organization of Rare Disorders: https://rarediseases.org/organizations/autoimmune-association/

Changes – The Only Thing On Which We Can Rely

Posted on by Dr. Elaine

I have never been afraid of change. Everything is constantly changing. The world is experiencing huge change because the COVID-19 Pandemic is having an effect on everyone. It is just one of the changes I have experienced over the last seven years. Some of the changes have not been pleasant. However, I have learned a lot. Just as I expect to do in any experience.

I am a big supporter of self-care & have been for many years. I rudely discovered I wasn’t doing quite enough. I am a stubborn person & it took me quite a while to listen. If I had listened to my body a bit sooner maybe I wouldn’t have had seven years of health changes that were anything but pleasant.

In 2013 our home was flooded during the great flood of Calgary. Not good; but, I had been wanting to get rid of the carpet in the basement & make a few other changes. What an opportunity. About a week later that I found out why I had been so incredibly tired for the past year or two – I had an autoimmune disease. Changes.

I had always thought of self-care as going for a massage, a mani-pedi, or as simple as a nice soak in the tub. I also knew that self-care meant not taking on too much & being able to say “no”.

With the news of an autoimmune disease, I listened to my body & I slowed down. Not enough. I adapted, somewhat. I found not being able to do all I wanted very frustrating. I wasn’t able to work enough to keep my job. I retired, not what I wanted, but what I had to do. I hadn’t been without a job in about 40 years. But, I had lots of things to do, just not enough energy to do them all.

Still not feeling well my doctor was watching me & referring me to appropriate specialists. I had my gallbladder removed because of stones & nausea almost every day. The surgery went smooth & I was feeling great the next day & attended my granddaughter’s grade 12 grad just 3 days later.

A week later, things changed. I awoke in great pain. Back to the hospital for a week’s stay, I had pancreatitis. I took the entire summer to recover. A great change to how I would normally spend the summer.

I never got back to feeling well, but I kept plugging along doing what I could to regain strength & endurance. Various symptoms continued to develop. Tests & referrals to a variety of doctors. Eventually, it was noted that my spleen was getting quite large (I hadn’t been able to eat much for several months & my weight was dropping. I was very happy to lose the weight, I needed to drop many pounds. The doctors weren’t quite so happy. Surgery was in order to remove the spleen. I think that went as well as could be expected. The spleen was cancerous, as the doctors had suspected. With my spleen removed I was considered in remission, I would only need to be followed by the cancer clinic. I could handle that. Again doing well recovering from the surgery. Having surgeries was a big change for me & I was pretty happy with both. As a retired ICU nurse, I was very aware of many things that could go wrong.

About a month after the splenectomy, I started to not feel well again. Another change that I wasn’t too happy about. More tests. Off to the hospital again. I wasn’t feeling too bad, & was surprised that the hospital kept me. A couple of days later that changed. I thought I was going to die & the doctors couldn’t figure out what was wrong. A different cancer this time. I was thrilled that it was just cancer & could be treated with chemotherapy & was expected to have a full recovery.

The chemotherapy routine was different – another change. My husband was a marvelous caregiver; I will be forever grateful to him. I finished chemotherapy in February 2020. COVID hit & within a month we were in lockdown. However, that wasn’t a big change for me; I had been very careful since my spleen was removed because no spleen decreases your resistance to infection.

What changes have occurred since then? Well, nothing very major. Another autoimmune disorder, but not much different than what I already had.

Changes

Elaine
Before Chemo
During Chemo

Every day we undergo changes we don’t notice. In one day 2 to 3 million red blood cells are produced. As cells are produced others are dying. As many as 1011 cells die each day in adults. These are only some of our cells. Different cells live for various amounts of time. Just as we cannot step in the same river twice, we are a different person every day with many new cells. Change in you, in me, every day: wow!

When faced with change I suggest looking at what you can learn. Discover how change can be of benefit, or provide the source for an adventure. Whether it is health, how you are functioning in this world, or discovering more about yourself you have a choice to embrace change & make sure you emerge a better person OR you can choose to let the change control you.

I am working to build my coaching/mentoring business. As I do this work, I realize I have lots to learn, not the least is more about technology. I am much more aware of the positive changes we can make. Sometimes we need to make changes so we can manage the changes we have accepted in the past. I love helping people discover the wonderful things they can do with just a bit of discovery & guidance.

What changes would you like to make? Oh my gosh, we can actually choose to make changes. Where do you want to be in 5 years? Will you need to make some changes to get there? Will there also be changes that ‘just happen’?

Book a time in my calendar to schedule a free chat to uncover your strengths & move forward to make your dreams come true.