I have mentioned a number of times that I am enrolled in the Entresto Central Support Program. This program is sponsored by Novartis, the manufacturer of the new heart failure drug known as Entresto. The program pays most of my co-payment for this new drug, which is a substantial amount when compared to my other co-payments.
The program also generates snail mail and e-mail correspondence to me that contains a lot of helpful tips about things like diet, exercise, the benefits of getting into a routine, organizing and taking your meds, etc. So I was intrigued by a recent e-mail from the program appeared in my inbox. The subject was: Staying Positive Can Help Maintain Progress.
For those chronic illness patients who have a family member as a part-time or full-time caregiver, it is a relief to know that your care is in the hands of someone who knows you and has your best interests at heart. But sometimes it can be stressful to think of the added mental and physical workload that is now resting on the shoulders of your loved one.
I do not have a caregiver. I am fortunate to be living independently and can manage my own finances, engage in volunteer activities, manage my medicines, get a lot of exercise and prepare my meals without help. But there are some occasions where I need to have the support of friends and family members. I am familiar with the nagging feeling in my mind about whether I am asking too much, always concerned that am putting a strain on those in my extended support network.
One thing I love about a blog is that I can edit things. Whether it be on a piece of paper I have scribbled on, or a computer with typed commentary, I have the ability to cross out, erase, or backspace through to edit and refine the language. The story always becomes something that I can take pride in.
I can’t say I take much pride in how I have handled the events of the last few weeks. As background, this summer challenged my allergies and sinuses. I either had watery eyes and a runny nose, or I was fighting aches in all of my sinus cavities. I think the really bizarre weather helped create an environment that made being outside a misery. When you fight shortness of breath due to heart failure, it doesn’t help that your respiratory system is plagued with allergies and sinus headaches or drainage.
Having been diagnosed with heart failure approximately six years ago, it does sometimes feel like the diagnosis was more of a sentence to a very strict prison facility. There is no right of appeal, and sometimes you feel so lonely it’s almost as though they put you in the ward for solitary confinement. I suspect other patients with chronic illnesses often feel the same way.
You see, our prison guard is named chronic, a guard that has endured throughout the ages. This is appropriate when you consider that the word “chronic” according to the Oxford Dictionaries means: persisting for a long time or constantly recurring. Your illness may get better for a while, or medications and treatments may help you adjust to the symptoms a little better. But then another symptom enters your prison cell, or a previously reformed symptom is allowed back into the cell. Before you can blink, chronic will triumphantly shut the cell door with a resounding bang.
When I decided to start a chronic illness support group, I consulted with a number of people for advice. One of the people was a former government colleague/friend who had been treated for myeloma. He participated in three different support groups and gave me a number of tips about the activities and discussions of each group and how they helped the members.
My friend’s wife also participated as a member in some group meetings in her capacity as a caregiver. Even though caregivers do not have the chronic illness, it is hard work taking care of the patients when they are ill, being their extra sets of ears and eyes, and being their advocates. I realized this must take an emotional toll on them over the long haul of the patient’s chronic illness, and I concluded caregivers need support just as much as the patients. So that caused me to wonder exactly who is it that takes care of the support giver?
Up until about four years ago, I am not sure the term chronic illness was ever used in my vocabulary. In fact, I didn't even though know that heart failure existed as an illness until the cardiologist made that diagnosis in 2013.
You can’t really blame me for that because it is heart failure is a term that most medical websites hem and haw about when they define it . For example, the American Heart Association says: “The term “heart failure” makes it sound like the heart is no longer working at all and there’s nothing that can be done. Actually, heart failure means that the heart isn’t pumping as well as it should be.”
I have referred in other posts to the frustration I initially experienced when some people acted as though I could still do everything I used to do pre-heart failure. They thought I could follow the old diet, enjoy more than the occasional drink of alcohol, run and exercise and climb stairs the way I used to, and perform miracles fueled by adrenaline rushes. As often as I tried to establish that a frail imitation was residing in the old Melanie’s body, it seemed that I could not get the point across.
I was very annoyed that people did not seem to get how much this chronic illness had changed me. While I was thrilled that I did not look as awful as I felt, I sometimes wondered if people thought that I was making it all up and that I had just settled into a chronic laziness as I grew older. Thoughts like this made me even more frustrated.
In a post several weeks ago, I discussed my goal to start a support group for people with chronic illnesses. I am happy to report that a plan is quickly coming together. In fact things came together so quickly that the first meeting will be held before the end of this month.
I thought I would use the popular “FAQ” (or Frequently Asked Questions) format to provide you with the details.
In the 1960s, a collection of short stories with the title “The Loneliness of the Long Distance Runner” was published by Allen Stillitoe. I never read the stories but the title always intrigued me, and now that I have heart failure it intrigues me even more.
According to the website booktrust.uk: “The title story in this classic collection tells of Smith, a defiant young rebel, inhabiting the no-man's land of an institutionalized borstal. As his steady jog-trot rhythm transports him over an unrelenting, frost-bitten earth, he wonders why, for whom and for what he is running.” (A borstal is a youth detention center in the United Kingdom.) So why does the title of the book intrigue me? Because managing a chronic illness like heart failure is definitely a marathon proposition and can be a lonely journey.
We are approaching the time of year where folks like to get out of town and explore new and exciting venues. Even if you have a chronic illness, you should not let that stop you from travelling to new locales. It used to be that when I traveled, my to do list only included things like what to pack and making sure I had sufficient resources for an enjoyable trip. But now that I have heart failure, a chronic medical condition, there are so many more to dos that need to be added to my list.
First, is a task that might sound a little negative. But let’s face it, bad things can sometimes happen even on the most glorious of trips. Or bad things can happen in advance that prevent you from making the trip. So it is important for a significant trip that is costing you money to make sure you have trip insurance, especially one that addresses not only cancellation but medical care and evacuation.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.