woman covering her eyes with her hand in grief

The Many Feelings of Grief I've Experienced Since My Diagnosis

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Grief: a normal response to losing someone or something that’s important to you. You can feel grief as a result of a variety of circumstances including the diagnosis of chronic illness and then trying to accept it. Grief, regardless of the cause, produces a variety of emotional responses. The list is long! I think I can tick just about every one of these, and some of them more than once.

I was diagnosed with chronic asthma just two years ago. It has turned my life upside down! The only good thing is I now have a disability sticker for our car to use when I can hardly get about. These are some of the feelings of grief I have experienced:

Anger: I feel this only sometimes and usually when I think too much about what I can no longer do. E.g. I always wanted to travel to Canada as my Dad was born there. Can’t get travel insurance. Can’t really fly long distances now. Can’t go where there is lots of moisture in the air. But, there are still places I can visit in Australia.

Anxiety: Oh yes! Lots of anxiety, especially when I ponder the future or think about the change from independence to dependence.

Panic: Sometimes…but I feel panic mostly when I am having a full-blown asthma attack. It’s hard not to panic when you can’t breathe. My panic is more physical than a grief response.

Change in world view: Hmm, perhaps I am more understanding of others. I certainly have more compassion for those affected by obesity. My reliance on steroids has caused obesity and I don’t like this. But, being able to breathe takes precedence over concerns about becoming so fat.

Change of values and beliefs: Yes, I have noticed a change in what I value and believe. What I value as a good day and a good time is now quite different. My beliefs are pretty much as they were.

Confusion: I definitely experience this! My brain just won’t work sometimes. The wrong words come out. My sentences get their endings lost. In the middle of a conversation, I just forget what I was saying! Sometimes what I say doesn’t make any sense at all. I recall answering an emergency doctor with something that appeared logical but just wasn’t correct, and the doctor didn’t realize my response was incorrect at all. I only realized later on. This confusion gets scary and frustrating.

Sadness: Oh yes! Lots of the time! I miss the old me. I miss my old life. All my relationships have changed. My kids treat me differently. So do my friends. I am the “fragile ill person.” Some friends have just dropped away. I think I am just “too hard.” There is deep sadness about these losses.

Numbness: Not sure that this applies.

Depression: Yes, yes, yes! But I know when and how to get help with this. I get professional help.

Sleeping difficulties: No, my CPAP machine keeps me in a deep sleep. On reflection, I do have hyped up nights where I sit up as a result of such high doses of ventolin. Then I feel hungover for a few days. Yuk! But, I think that this is a physical effect rather than a grief response.

Physical symptoms: Not due to grief but certainly from my illness. My physical limitations are frustrating.

Changes in appetite: No. But unfortunately I have to manage what steroid weight gain has done to me. I struggle with this.

Low self-esteem: Not sure. I struggle a bit with being obese but I do occasionally treat myself to a rather wild hair color, like bright pink with turquoise. That always makes me feel a bit better. And maybe people will remember my hair and not my size!

Difficulty concentrating: Yes. I do experience brain fog. Is this due to grief or my illness?

Inability to cope: Some days are better than others. I do not believe we should live a life of coping; life should be full of love, joy, experiences, fun and the negative emotions such as anger and sadness. Coping, as far as I feel, is not good enough for anyone’s life.

Guilt and remorse: My guilt is about the impact my illness has had on my husband and my family. It has brought so many changes into our lives and we have had to let go of many plans. If I dwell on this I do feel guilty.

Helplessness: Yes. So often I can’t do anything much at all except to just “be.” This has been very hard to accept.

Hopelessness: Oh yes! I really struggle with this emotion. I think this comes from the relentlessness. My illness is there every hour of every day affecting every aspect of me!

Loneliness: Yes! Yes! Yes! Chronic illness is isolating. Many people just don’t get it! Well-meaning friends and acquaintances offer all sorts of ways to fix me up, but often their suggestions do not help me at all.

Relief: no, this isn’t a grief response that I have experienced.

Shock and disbelief: Yes. At first I pondered “why,” but “why” is actually quite an aggressive question and can be self-damaging. Not even my doctors can tell me why, and why doesn’t change my circumstances one bit at all. So I am learning to let go of “why” and of shock and disbelief. This is the new me and my new life. Some days I easily accept that. Other days I fight with myself about this acceptance.

I am not sure the old adage that time will heal the grief applies when you are dealing with grief associated with chronic illness. For me it’s been like an onion skin. I deal with one layer only to reveal another layer. And like with peeling an onion, I have shed many tears. But gradually, acceptance happens at some level, but will time ever erase this grief?

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Thinkstock photo via natalie_board.

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Please Don't Ask Me 'Why' I Had a Flare-Up

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I am 67. My husband and I had a great life. We have three sons, 11 grandchildren whom we would see heaps of the time and a foster daughter with three children to add to the grandchildren number. We saw all these family members regularly and felt so blessed that they all enjoyed spending time with us. Our life was busy and we were physically fairly active with swimming and bushwalking.

Then, in the same month as my husband had brachytherapy surgery for prostate cancer, I got the flu. Now, I had been immunized, but this flu was a different strain. Nine months later I finally got to see the lung specialist. I had fluid still in my lungs, some scarring, asthma, an under-active thyroid and sleep apnea! Five trips to hospital in three months indicated that the asthma was a rather serious problem. I was so short of breath that walking for more than 10 minutes was beyond me. If I had a shower, I had to lie down afterward for about half an hour. And I spent many nights sitting up in a chair as I couldn’t sleep if I was lying down.

We went north to a warmer climate for a holiday and I could breathe! So we have ended up having to move 1200 kilometers (about 746 miles) away from our cold climate and our family so I can breathe. At least here in the warm climate, I have not had an asthma attack that has sent me to the hospital! But, my breathing is very rarely in the “OK range.”

Asthma has upended my life. No more bushwalking, no more time with my family, no energy, constant exhaustion, not being able to follow through with commitments to do things and the unpredictability of how I’ll feel day to day are just some of the impacts. I also experienced huge weight gain from steroids and definitely from being more sedentary. Then, whammy – the medication caused type 2 diabetes.

Being in your 60s and chronically ill in a new community is hard. You don’t have your network of friends to support you. You don’t have family to be present or to help out. I don’t have the energy to get out and about as I used to. It is hard to establish friendships. I have changed from an active, independent person to one who is dependent and not very active in the community at all. The chronic nature of this illness brings a special sort of loneliness.

My husband has been wonderful. He was prepared to move more than 700 miles from our home. He checks how I am every day and has taken over most of the household duties. He does the cleaning, washing and most of the cooking. Sometimes I can’t even drive any more and he takes me to medical appointments and the shops. We have definitely become much closer as we have had to come to terms with all the changes that chronic illness has brought.

The one thing that still distresses me though is his constant desire to have me answer his “why” questions. “Why do you get so tired?” ” Why are you having a flare-up?” ” Why don’t you rest more?” “Why have you had this attack?” “Why? Why? Why?”

The answer is: “I don’t know!” I can be fine one day and then bad the next. I just can’t work out what all the triggers are. Some I have identified, but the lung specialist and my doctor can’t tell me “why.” They can’t tell me if it will get any better either. It has been implied that this will just be how I will be from now on. I am at the maximum dose of medications for asthma and I still have bad times. Then, after a flare-up, I have to go though the minute details of every moment of the preceding few days as he searches for an answer to “Why?”

This actually really distresses and frustrates me! I have sort of accepted that this is just how my body is now. I do not make too many commitments anymore as I know I will often have to abandon them. My life is quite unpredictable and I think I can more readily accept this than he can. Perhaps this is because I have such a good medical support team around me and he doesn’t get this type of help. Perhaps he worries and gets scared when he sees me struggling to breathe or sees me sitting in the hospital with an oxygen mask or sees me gasping for breath with tears pouring down my face.

I do wish though that I wasn’t constantly being asked to explain “why.” I can’t answer that! The question doesn’t really help me at all. Lots of other people also ask me “Why?” It would be really helpful if instead I was asked, “What can I do to help you?” Now that question I can answer!

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Why I Understand When People Don't Believe I'm Sick

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Dear family, friends, acquaintances, and passers-by with health advice,

There are some of you who don’t believe that I am sick. That I’m faking my health issues. That I just want attention. I understand your skepticism. For decades the medical community told you I was fine, and you believed them because they were the professionals. You’d heard stories about people who couldn’t get attention any other way so they became hypochondriacs, and assumed that was me.

It used to be important to me that I prove to you that you wrong. Now I am confident in who I am, and I no longer need outside approval. Honestly, sometimes though, it just still bothers me. So I got to thinking, how can people close to me and who love me not understand the agony I am going through most days with all of my chronic medical conditions?

Because…

I am a miracle of science!

I take three medicines before I get out of bed in the morning:

  • One medicine for my neuropathy pain
  • One medicine for my muscle pain (myopathy)
  • One medicine keeping the asthma at bay so I don’t stop breathing (asthma)

After breakfast I take four to five more things:

  • One medicine to keep my muscles working. Just. A. Little. Bit. Longer.
  • A little something to help my belly feel better, it’s been through a lot with IV treatments
  • Vitamin D (no one knows why I continually have a vitamin D deficiency)
  • Vitamin B complex supplement for energy and to keep those Bs up
  • Sometimes during the day, I need to use my rescue inhaler for my asthma, so my lungs will keep going and I can stay out of the hospital. I’ve spent many weeks in there (and a bit in the ICU) when I couldn’t breathe and that’s no fun at all!

At night there are seven to eight more medicines:

  • One to keep my nerve pain at bay while I sleep
  • Two that keep me from having intense muscle spasms
  • That same one again that keeps my muscles working. Just. A. Little. Bit. Longer
  • The medicine that’s helping my airway remain open so I don’t stop breathing
  • One to help me relax and sleep after the struggle to keep this body going one more day
  • One to reduce my allergy symptoms so I can breathe better and not have as many sinus problems
  • After all of these, if I’m still having problems, the doctors recommend Tylenol. They wouldn’t want me to take something stronger. But that’s a discussion for another day.

Then I hook up to the CPAP machine so I don’t stop breathing any more at night.  Who knew I stopped breathing up to 20 times an hour? I didn’t before the sleep
study.

I understand now: You are seeing this miracle of modern medicine that is my body functioning, through the pharmaceutical symphony of my medicinal routine. Of course, if I ran out of these medicines, you’d see how I feel before I take them and as they wear off, and you’d see my breathing and strength slowly ebb away, but I’m great at putting on my strong face and marching through. Except when I’m not, and then I’m in bed where you can’t see me.

I finally see the “me” you see. She is quite the little dynamo! A homeschooling mom with seven children ages 5 to 27, a wife, a blogger, an entrepreneur. That sure sounds like a healthy person at face value! Thank you for showing me how well these medicines work (over $250 per month, and I have insurance!). From now on I promise that I (mostly) won’t get frustrated with your lack of understanding, and maybe after reading this, you’ll understand me a little better, too.

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Why My Asthma Isn’t Like Most Others

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When people mention the word “asthma,” they often think they know what they’re up against. You see the stereotypical “asthmatic” on TV as a “geek” (I won’t even go in to why that bothers me so much). Then add the word “brittle” to the equation — and believe me, I’ve seen it all.

I’ve been told countless times by people who “also have asthma” that they “know” how I feel. They say it can’t be that bad, but they don’t face challenges with it like I do. I’ve even had health professionals try and tell me my asthma is “routine.”

The truth is my asthma isn’t like most others.

My asthma is unpredictable. It’s limiting. I can go from being OK to having to go to the hospital within an hour. My asthma scarred my lungs, and I have to use oxygen to be able to function.

It means simple things like walking around my home, playing with my pets or even just sitting and typing on my laptop are extremely exhausting. I don’t work, not because I don’t want to (believe me, if I could I would), but because I can’t. I rely on people to help me on a daily basis with the simple things like washing, dressing and cooking meals. I have to take more than 50 tablets a day, nebulizers, inhalers and other medication regularly to keep myself going. This isn’t a typical life of a 29-year-old woman. But this is what I’ve had to deal with since I was 21 when all of this began to go bad.

Before my asthma turned into what it is today, I was just at the beginning of my adventures. I had just left home and moved into my own little place and was starting a degree in media studies, which would have set me up for my ultimate goal: to teach at my local college.

My home wasn’t much — room in a shared house in the attic — but it was the perfect place to watch a film, read a book or even get out a sketchpad and draw. I was happy. It was just me, my hamster and my guinea pig. We were a little family of our own.

But I didn’t expect to be wheelchair-bound by age 25 due to my asthma and a spinal problem I had since childhood called hereditary spastic paraplegia, which attacks the nerves in my spinal cord and makes them degenerate. I also had an old injury since I was a child that got worse as I got older. By 27, I would be using oxygen at home, along with nebulizers and other things. Back then, I was able to control my asthma with inhalers, but things happened and it became what it is now.

The problem is that a lot of people don’t really know what brittle asthma is. When people see me out and about in my chair, they tend to ask me what my illness is and why I am the way I am. I have to explain to them that unlike most people who can control asthma with inhalers, my asthma is a lot more aggressive and actively shuts down my lungs piece by piece. I then have the typical lecture that “(insert name here) has asthma, but it isn’t like that,” along with other clichés such as, “You’re much too young to be going through all that,” which, oddly enough, doesn’t make me feel better. It actually makes me feel as though my condition is being trivialized and I have to justify to yet more people (and myself) that what I am going through is real. It does hurt. It isn’t easy.

I want people to see what asthma really is. It’s a deadly disease, and it can become so severe that life is limited. You have to make the most of every day because you don’t know when that “last” attack is coming.

There have been times I have feared for my life and have nearly lost the fight. I’m not asking for sympathy or anything shallow like that. I just ask that people don’t judge what they think they know about me and get to know what is really going on here.

Follow this journey on My Journey, Every Step of the Way.

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3 Reasons Why Asthma Is My Motivator

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Breathe in…breathe out. Breathe in…breathe out. Breathe in…breathe out.

I was 10 when I had my first asthma attack. I was running around outside with my friends playing tag, and my throat started tightening. I had no idea what was happening to me except for the fact that I couldn’t get any oxygen. I didn’t give up and somehow made my way to my teacher, hand signals and all. It was scary going to the hospital; I never knew what it was like to not be in control of my body. I was a carefree, fun-loving pre-teen who thought anything was possible. Why would this happen to me?

Fast forward more than a decade, and now I carry my inhaler around with me religiously in case my body decides to give up on me. Asthma has so many different faces. Sometimes asthma is a visible illness, where daily tasks prove difficult, such as walking up a flight of stairs. Other times it’s not as visible, which is where I would fit in. Most people wouldn’t know I have asthma unless they saw me use my inhaler. Some days I feel helpless because I can’t control my body. My asthma is triggered by a laundry list of allergies, strong odors such as cigarette smoke and more importantly, exercise.

I love to exercise, and that’s when my asthma is the most active. I love to box, play tennis and participate in indoor cycling. All of these activities take a great amount of stamina, especially from my lungs. I have to make sure I take my inhaler before I exercise, and when I’m not feeling my strongest, take the rest I need. I should say that again: take the rest I need. Sometimes I’d like to think I can keep going without taking the rest, and that I’m somehow no longer going to have asthma. I have to remind myself it’s a called a chronic condition for a reason. However, there are three reasons this chronic illness is my motivator:

1. Patience

Being asthmatic has taught me patience, and it motivates me to pay attention to my body. When I don’t exercise as much, I can tell by the way my body responds. I’m completely out of breath, and it takes me a couple of days, sometimes weeks, to gain back the stamina in my lungs. It’s incredibly frustrating, but it definitely motivates me to work out more.

woman standing next to a wooden railing overlooking a river
Kamilah taking a rest from hiking in Great Falls, Virginia

2. Hope

I think exercise has allowed me to rebuild parts of my identity I was told I would lose, such as being a high-performing athlete. When you have a chronic illness, you feel robbed of your identity, maybe even hopeless. Constantly exercising and listening to my body is what helps me monitor my asthma as well as maintain a healthy lifestyle. There’s hope when you know your body, because in turn, you know your limits. And somehow, you get your power back.

3. Routine

Uncertainty is something anyone with a chronic illness will tell you crosses their mind daily. Several questions come to mind when I think about my asthma. Will I be able to run in five years? Will my asthma completely debilitate me? I found exercise helps me regulate my asthma, although asthma attacks are largely unpredictable. It gives me comfort knowing I can manage some part of this illness, and I think everyone has to find what motivates them, then stick to it.

My overall goal is to remain healthy and to monitor my asthma as needed. Healthy looks different on everyone, but you’ll only know what you’re capable of once you try something new.

Follow this journey on Anchored in Health.

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I Am Not a Chronic Illness Warrior

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I’m just a woman who lives day to day. As the John Denver song says, “Some days are diamonds, some days are stones.” In my version, the song says, “Some days are diamonds, some days are big rocks that squash me.”

I have 21 different chronic health conditions. Five of them could be fatal at any time. Does the fact that I manage the effects of each one every day make me a warrior? I don’t think so – I think it makes me a good manager, even though I could never put it on a resume.

When I think of the phrase, “I am a warrior,” I think of being a fighter. But these illnesses are part of me now. So in my mind, being a chronic illness warrior means I am fighting myself. Which I freely admit I did when I first started getting those 21 diagnoses. When I received my disability notification from Social Security, my single diagnosis was chronic, severe asthma. I then spent a lot of time being angry at my body for failing me at a time when I had just reached my career goal and fighting the knowledge that I was no longer going to be able to do the job that I loved.

In fact, I fought myself for the next five or six years as my body reacted to the massive doses of steroids that had kept me alive but made the the list of my health conditions get longer and longer. During that time, I would definitely call myself a warrior, battling the diagnoses by simultaneously ignoring the symptoms and then over-reacting to the crises that occurred. I fought the idea that I was going to have to take care of myself if I didn’t want to continue the trips to the emergency room and the days of hospitalizations. And what I found was that the more I fought the idea of being sick by being the warrior against my body, the sicker I got. Once I stepped back and acknowledged the fact that I was sick and that I had to take care of myself, I realized how much energy I had been putting into my battle with my body.

Discovering the book “How to Be Sick” by Toni Bernhard with its message of “although one’s body may be sick, one’s mind can be at peace,” was a life-changer for me. I’ve done my best to embrace that philosophy in my daily life.

So now I’m no longer a chronic illness warrior, I’m just someone who gets through each day — sometimes managing to dodge those big rocks, sometimes getting squashed by them.

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