The Little Guru

Tag: pulmonary hypertension

10 Important things you should know about chronic illness

I’ve written this article that has 10 Important things you should know about chronic illness to help educate those who want to learn about chronic illness. I want to spread awareness so that friends, family, employers, coworkers, and healthcare professionals can better understand chronic illness. My hope is that an increase in awareness will help strengthen relationships, reduce misunderstandings, and improve support systems for those with chronic illness.

10 Important things you should know about chronic illness

1. Nobody WANTS To Feel Sick

We don’t choose to feel sick. It happens! So if I cancel last minute, it’s because I really don’t feel well and it’s not just an excuse.

2. Many Doctors Don’t Understand Chronic Illness

Patients often have to spend precious time searching for a doctor who understands their illness and provides appropriate treatment options while their symptoms potentially worsen.

3. Being Unable To Work Is NOT a Vacation

We are struggling every day to do simple tasks: getting out of bed, getting dressed, making a meal, bathing, etc. Being sick is hard work.

4. Chronic Illness Can Trigger Many Emotions

Chronic illness itself can change the biochemical makeup of the mood control center in the brain. This can lead to depression and/or anxiety, which I think, comes with every illness.

5. The Symptoms of Chronic Illness Are Very Complex

The symptoms experienced by those with chronic illness vary depending on the illness. This can be extreme fatigue, pain, headaches, brain fog, nausea, and dizziness.

6. The Chronic Illness Fatigue Is Much More Than Being Tired

Fatigue is a common symptom in chronic illness. Dreaded fatigue can be easily triggered by simple daily activities or by more elaborate events such as holidays. It can take days, weeks, or even months to recover.

7. Brain Fog Is Extremely Frustrating

Brain fog is frustrating because it is a difficult symptom to describe. A cognitive dysfunction common in chronic illness. Those with brain fog often know what they want to say, but can’t find the thoughts or words to communicate it.

8. There Is a Greater Risk of Dangerous Infections

The immune system in those with chronic illness may be overactive and instead of attacking infections, the chronic illness immune system wastes time and energy fighting the body’s own organs, joints, nerves, and muscles. A minor cold in a healthy person could progress to a dangerous infection in someone with chronic illness.

9. Sensitivity to Smells Is Common

Certain smells including perfumes, colognes, cleaning agents, and smoke can trigger headaches, brain fog, nausea, and other symptoms in those with chronic illness.

10. It Takes a Lot of Effort to Manage Chronic Illness

Having a chronic illness is hard! Making sure we get adequate rest, avoid trigger foods, take medications at the correct times. It is understandable that sometimes we just want to just “take the day off”.

You can make a big difference in the lives of those with chronic illness by learning more about their symptoms and approaching them with compassion and support. Gaining an understanding of chronic illness will help make these conditions less “invisible.”

November 23, 2020
Paw Prints Left On My Heart

1 message received.

It’s a text from my mom saying: “Sorry Nicole, It’s Time”

I knew this day was coming, but in my heart, I was not ready to say goodbye.
“Mom how is he? I’m on the way… “

There he lay, my 12 year old miniature Jack Russel, weak and frail.
Indeed it was time.

He was given to me as a gift by my Uncle, Brother & Sister-in-law on my 18th Birthday, the year that I was diagnosed with Pulmonary Hypertension. A year that was full of grief, fear and confusion. This little dog was there for all of it. He was my biggest distraction, my greatest friend and quite frankly, my saving grace.

About a year ago, my little Chino had suffered from a stroke. At the time, we didn’t know as we thought he had chomped on a frog and possibly been poisoned from it. He was a master for sniffing out those hoppers and would spend the night barking at it until it hopped away out of danger and from the mouth of my Chino.

Weeks went by and we slowly started to notice changes in his behaviour. His playful spirit was fading, his light-hearted gallops were becoming slow paced walks, and the sparkle in his eyes were slowly dimming.

The last few weeks of his life were the hardest for me. I had to come to terms with the fact that my little Chino was tired and time was running out. I think to myself how ironic it is that, being during the month of Novemeber, PH awareness month, he kept me distracted, focused on something else other then my own battles with my illness. Traumatic flashbacks and manifested fears. Who knows why but they happen.

Im a big believer of the “things happen for a reason” saying and I truly believe that my Chino played a big part in my healing and dealing with my illness. This year has been the most challenging year yet when it came to life and PH and my little dog was there for me. I’m so glad I was there for the end for him.

My mom drove the car, I was in the back seat holding my small dog, trying to my hardest to engrave the details into my head of his beautiful cappuccino coloured coat, how his glossy black nose curved a little more to the left than the right, how tiny he really was and how in that moment, I was saying goodbye to the one soul that helped me get through the toughest hurdles of my life. I cried the whole way to the vet.

‘Dr. A, is there anything more I can do for him?”

“You and I have done all that we can, I think it’s time we say goodbye”

Dr A took my boy to the theatre room to prep him. I asked doc If I could be present and she said she would explain how everything is done and what to expect.

I walked into the theatre room where Dr A was with my Chino. The room fell silent as I approached the steel table where my boy layed, placing my hands ever so lightly on his head. I cradled his body in my hands, kissed his head and thanked him for being my best friend. I told him that the pain would go away and hugged him for the last time. I didn’t let go.

Dr A placed the injection in the central line in his arm. In that moment my hands tightened around his chest so that I could feel his heartbeat. It happened in a blink of an eye. Movement stopped from under my hands. My heart shattered into a millions pieces. My boy was gone.

As difficult as it was, I am so grateful for Dr A. She really understands the sorrow that comes with losing, not just a pet, but a a family member and really allowed me to go through the motions through the entire thing.

I dont think my heart will be whole for a very long time, but I know he is ok now.

If I can share one thing from this whole experience is that, if you are strong enough and willing, be there until the very end for your pet. It’s the hardest thing you will ever have to do, but peace will wash over you and you will be happy that you were there for them till the very end.

I was told by a family member & friend that all our animals welcome us in heaven. I find solace in that.

RIP my Small Dog. I love you always.

December 3, 2018
Pulmonary Hypertension Invisible Illness. For me it isn’t…

November marks the month of bringing this illness to life. Letting it be the star of the show, showing people just how ‘great’ Pulmonary Hypertension is.

Pulmonary hypertension might be an invisible illness, but it isn’t invisible to me. Lately I’ve been reminded of how serious my illness really is. This year alone we have lost about 6 patients, that I know of, to Pulmonary Hypertension. Some that are part of the South African PH Association that I got meet in person and others that I discovered on social media. It’s gut wrenching to see that message that we have lost yet another person to PH. A little part of me dies inside. Every. Single. Time.

I see myself as lucky though. I’m one of those few patients that has actually gotten better in terms of medication. From taking 8 pills a day now down to 2. It’s truly amazing but it’s not to say I didn’t fight my way to get here. It was hard but I’m grateful that I can live a ‘normal’ life.

I feel frustrated at times by the changes in my body. Even after 12 years, there has been ‘new-limitations’ to deal with. Something as simple as storing linen on the top shelf has gotten me a little out of breath to say the least it’s so discouraging.

Even though my disease is invisible, I feel how it isolates me from friends and family. Many times I have declined invitations to parties because of the smoke and the fact that there will be a lot of people around. ‘Perks’ about having this illness is that it comes with PTSD and anxiety. I had suffered a syncopal episode at a function and since then I have developed a serious fear that it will happen every time. I’ve also watched a lot of people in my life become fair-weather friends after my diagnosis too. All part of the package though right?

Every day, I am reminded of what it means to live with pulmonary hypertension, and the physical limitations it has placed on my body. Some days are better than others, but living with a progressive and incurable heart-lung disease is still a heavy burden.

Even if you can’t see it, I know what it feels like to live with pulmonary hypertension. I’ve felt it every single day for the past 12 years.

Let us be more aware and help those that suffer from invisible diseases!

November 8, 2018
#WorldPHDay

Every year on May 5, pulmonary hypertension organizations and groups around the world participate in World Pulmonary Hypertension Day activities to raise awareness of this rare and often-misdiagnosed disease and to celebrate the lives of the global PH community.

This year, phaware global association (www.phaware.global) has developed an amazing app called PHaware 365. The will allow those who have been affected by PH or who have a loved one that has been affected, to show your support and raise awareness!

World PH Day brings global attention to the importance of improving the quality of life and life expectancy of the more than 25 million people living with PH worldwide.

I urge you all to get involved and show your support for Pulmonary Hypertension patients. It unfortunate that many patients are often misdiagnosed which in turn, leaves patients with a very short life expectancy if untreated.

Download phaware’s free app now: www.phaware.global/phaware365
Show the world you are #phaware of this rare, chronic lung disease. Snap a selfie. Decorate your photos. Customize with PH facts. Add awareness stickers. Share your #WorldPHDay event photos across social media and on the phaware365 Global Selfie Stream.

Save. Tag. Share.
#WorldPHDay
Step 1: SNAP a Selfie during events around the globe.
Step 2: DECORATE your photos using the phaware365 app – available on the App Store, Google Play or at www.phaware.global/phaware365.
Step 3: POST your photos across social media. Be sure to tag them with #WorldPHDay & #phaware. Challenge your friends and family to participate!
Create global pulmonary hypertension awareness through engagement and innovation to forge a new course to a cure. With your help, we can all make a difference.

Please do share your photos to the Pulmonary Hypertension Association of South Africa Facebook page and don’t forget to #WorldPHDay

Save

May 2, 2017
Yes, it’s traumatic…

Once Pulmonary Hypertension was brought to my attention, it’s been nothing but a life altering path I did not choose, but was forced to take. A difficult journey my soul has chosen to take.

Every disease has it’s own personal baggage, some worse then others, but they somehow can all relate to each other. The load itself of any disease is burdensome, but we never really think about the most important, if not the heaviest burden of them all? The mental struggles.

Iv been living with PH for, what seems like forever, but diagnosed 10 years. The past couple of months has been exceptionally difficult for me, with my body, in my opinion, feeling like it’s rejecting my medication which I have been taking up until this point and with me dealing with the side effects of such. Having fainting ‘episodes’ at random times and while driving- trust me that wasn’t pleasant, shortness of breath, numbing sensations all over my body and striking pains in my chest, it has been quite a roller coaster. My days consisted of calling my husband in a frantic state feeling in that moment that I was dying, to us driving to the emergencies rooms to make sure that I wasn’t dying.

When it first started it was scary, now it’s just frustrating because I want to get over this phase, fast. I’m so over feeling like this that I would literally do anything to feel ‘normal’ again. Normality comes with a price tag and it’s unfortunately called PTSD..

“Post Traumatic Stress Disorder: a condition of persistent mental and emotional stress occurring as a result of injury or severe psychological shock, typically involving disturbance of sleep and constant vivid recall of the experience, with dulled responses to others and to the outside world.”

In my mind, PTSD is something that someone suffers after surviving an attack. Which, now brought to light by my therapist, I did. It’s arrival was not welcomed, nor wanted but I’m starting to accept it. At least I’m trying to… I had not even given consideration to the fact that PTSD lingered let alone the depression and anxiety that comes long with it. The problem with this is that most of the world have not yet put together that a majority of chronically ill patients are also suffering from Post-Traumatic-Stress-Disorder because being told “you have an incurable and terminal disease” is trauma in itself.

Suffering from a chronic illness on it’s own is hard. Suffering from PTSD and a chronic illness is just excruciating! Slowly getting familiar with this mental illness means I can identify my triggers and try cope. With PH it’s difficult because if I feel out of breath, is it a sign that I’m having a panic attack or is it my PH giving me a warning sign telling me that my PH is deteriorating? Which lands up giving me more anxiety!

I have grown up with people who suffer from severe depression/anxiety and I could never really understand how they could be so angry and so sad all the time. I understand now. Completely and utterly. It’s really a dark place that your mind travels to and can be really difficult to get out of it and no matter how hard someone try’s to get your frame of mind into a more positive space, it just makes you sink deeper into the black hole.

Mental health is an invisible disease just like PH. Your brain is an organ, and it deserves it’s own upkeep. It’s taken alot for me to talk about this issue, let alone write about it. I’ve found that talking about what I’m feeling and going through really does take the pressure off. Iv learned that I’m not alone is this and that there is a silver lining. It just takes a little time and patience.

Save

November 25, 2016
947 MTB Challenge for PH!

On the 13th November 2016, a group of family and newly made friends, worked up the courage and took on the 947 MTB Telkom Challenge. I, myself , was supposed to join in on the fun but due to some health issues, I waited patiently at the finish line cheering the group on!

The group of riders all rode for a cause, to make Pulmonary Hypertension known in South Africa and to brighten the lights and lives of those suffering from the disease. My heart filled with pure happiness as each and every rider rode through the finish line and I couldn’t have thanked them enough.

Life can be tricky and we may sometimes ask why me? , why now? , but there is one thing I know for certain and it’s that no matter where the path may lead, the big man upstairs with fill your life with the people who are meant to be there to get you through your struggles, to lift you up when your feeling down and to remind you that life is really beautiful if you just allow yourself to feel in that present moment.

Meet the PH Warriors..

The PHASA Warriors

Representing and cheering for our team!

My Love

My Team of Warriors- In this moment they all gave me their medals to say that they did it for me ( I gave the medals back- promise)

Pulmonary Hypertension Association of South Africa

My hero- Loraine du Bois

My Champ, My Person

For more info on Pulmonary Hypertension, click here.

#PulmonaryHypertension #PHwarriors

Save

Save

Save

Save

Save

November 23, 2016
Discovering the PH Me…

This year marks 10 years that I have been living with Pulmonary Hypertension and admittedly, it’s the first time I’ve really experienced my silent killer with full force. If you are a little lost on the whole PH thing, you can read about my introduction here.

It’s quite a surreal moment for me to reach a 10 year mark. It’s almost theatrical to tell someone that I have been living with PH for a decade because not many people reach the 3 year mark. I’m the lucky few that can see the light of day just a little longer…This month has been incredibly difficult for me as I have come to realize the circumstances that surround this disease and the intensity that comes with it. Hang on.. I haven’t been that naive to everything that’s happened to me. I am constantly reading up on PH and it’s horrors so I am well aware and informed, but this year has really hit home for me.

The professionals call it (PTSD) Post Traumatic Stress Disorder: a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.

Yup- PTSD has surprised me on my 10 year anniversary, in November which is PH awareness month, might I add… So apart from dealing with taking medication, Dr’s visits, pains, deaths of fellow PH suffers that I idolized and constant worry of life itself, now I’m dealing with severe anxiety and depression.. Great! I guess it had to catch up to me sometime. I had a pretty good run the past couple or years so I shouldn’t be complaining but coming to the realization that I could in fact die from this disease is pretty daunting. When I think back to the day that I found out that my heart was double it’s size and I had less then 3 months to live, my state of mind was complete and utter calm. The fear of death did not for one second cross my mind and I was happy, so happy that I would be the one comforting those around me who shed the tears for me. I shake my head is disbelief that I was so disconnected with what was happening around me, to me. The chaotic schedule’s of seeing Dr’s and doing multiple tests at every possible clinic, could of been the distraction but It was possibly the best thing that happened to me out of the whole ordeal. To be completely disconnected from myself.

If only I could feel that disconnect now, to feel absolutely nothing…

I’m a strong believer of things happening for a reason, yes I guess I still question why I had to deal with a dreaded disease at such a young age, but I don’t doubt for a second that I am exactly where I need to be. This disease has not only lead me to the right people in the right places but has also opened my eyes to life.

I cannot express enough how horrible the feeling of not being able to breath is. Or waking up in the morning and feeling so weak and anxious that you can’t possibly imagine getting through the day. Pulmonary Hypertension is hard enough, but adding severe anxiety to it, is just exhausting! I am constantly reminded that I have gone through the worst and that this is just another hurdle to get over, but why does it feel like the worst is yet to come? For me, It feels like my biggest fears about this disease are coming to life and I cannot bear it..

My PH roomie has invaded my space and is going nowhere, so it’s about time I get comfortable and get to know it a little better..

An invisible disease that is dying to be seen, maybe it’s time…

November 14, 2016