13 Reasons Chronic Illness Makes Me Feel Frustrated
Oh! I just want one day when I can feel normal! Just one day!
I am so over being ill! There is so rarely any reprieve. Yes! I know that is what “chronic” means, but I am so weary of being ill.
Just one day of feeling normal! This just isn’t going to happen. Most days I can handle this but today isn’t one of those days. Today I can’t get myself to be positive. Today I can hardly breathe! I have severe asthma. I have had asthma for just over three years now.
The steroids I use to keep me breathing have resulted in type 2 diabetes and now the effect of the steroids on my diabetes is causing nerve and kidney damage. I have just been diagnosed with CKD, chronic kidney disease!
Today I had hoped to go and sit at the beach with a good book and a picnic type lunch. But, I can’t really do this as my breathing is so poor. I have now had so much albuterol that I can’t stop shaking and I have the most dreadful headache. I need to stay home because I have a nebulizer I can use if things get even worse.
Frustration, according to Wikipedia, “is a common emotional response to opposition, related to anger, annoyance and disappointment, frustration arises from the perceived resistance to the fulfillment of an individual’s will or goal and is likely to increase when a will or goal is denied or blocked.”
So just what is going on to produce this level of frustration today? I certainly feel disappointment. I think there are at least 13 factors contributing to how I am feeling today.
1. The drudgery of managing symptoms
Every day is the same. Measure blood sugar level. Take medication. Measure peak flow rate and oxygen levels. Take puffers, wash my mouth out.
Keep monitoring both all day and adjust my food intake, the amount of water I drink and how much I exercise – and also manage the use of puffers as the day progresses. This process doesn’t change except some days are more demanding than others.
2. Feeling cooped up
Today, and on many days, I am limited to sitting in my chair and attempting a few very short walks! After day after day of this I just want to get outside and do normal things! It is like fighting an uphill battle every day and just having to stay and rest can lead to a sense of isolation. I feel cooped up because I have little choice.
3. Being diagnosed by people
Friends suggest remedies. Have you tried this? Or that? And then there is the group who tell me what I need to do: if you lose weight (well you try that when you are on steroids!), if you swim your lungs will improve (just try doing that when your oxygen saturation is 92 percent or less!) and so it goes on. This doesn’t help. It is virtually telling you that you don’t look after yourself or your health properly. This can produce quite negative emotions if you are not careful. Consequently, you have to expend your limited energy reserves to keep yourself from reacting!
4. Unable to contribute
On my sick days I cannot do housework or cook or contribute to the household in any way. Some days like today, I can’t even manage to have a shower. This can contribute to feelings of worthlessness and can be extremely frustrating. I loathe having to say things like, “I can see lots of dust on the exhaust fan, would you be able to clean it please?” I can see what needs to be done but I cannot do any of it. This is a huge adjustment to make and it isn’t just made once. It continues to be an issue as every day you see the limitations right in front of you. Today, I have a pile of washing I need to put away, but today, I do not have the energy to tackle this task. Once the task is done I know I will have to deal with it again next time.
5. Loss of independence
I worked as a professional and had lots of responsibility at home and at work. It is hard to accept that I need to be looked after. I can’t drive anymore. I am finding my world is getting smaller and smaller. The change from independence to dependence is another big one.
6. Social life
Recently, the Commonwealth Games were held here where we live. We didn’t bother to get tickets as every time I have bought tickets to an event, I have been unable to attend due to my illnesses. Well, over the period of these games, I spent all of this time sick in bed with the flu. It is the same with everything. If I plan to attend, the chances are that I will be unable to attend! I have stopped even trying now. This is frustrating to me but also involves letting myself and others down. A social life is almost non-existent.
7. Medical costs
Fortunately, in Australia, we have a very good financial safety net for people with chronic illness. Most of my medications are subsidized and once I reach a certain level of expenditure, my visits to the doctors are also subsidized. But there is still a heavy financial burden. I am retired so I am living on a fixed income. I have to spend close to, after subsidies, $200 per month on my medical needs. Without this outlay I think I could be spending money on much more rewarding and pleasurable things. This doesn’t just affect me, it also affects my husband too.
8. Relationship costs
Yes, this is a huge factor. When you have chronic illness enter your life, it changes so much of what you can and cannot do. My family are quite understanding but there are many times when I can’t join in. Friends? Well, some stick with you and communicate in other ways in place of face to face… the rest? Well, they drift away. For someone who was quite a sociable person, this too is hard. I don’t really want to be defined by my illnesses but I am in the “too hard” basket for lots of my “friends.”
9. Living for medical appointments
I have so many medical appointments that I feel I should have a permanent booking for a seat in the waiting room. There is always such a long wait in the waiting room! I arm myself with puzzles, books and social media. My life seems to be a merry-go-round! I have all these different seats in different waiting rooms! It goes on and on! At least the receptionists know me now. Rarely does a week pass without at least one appointment.
10. The invisibility of it all
I don’t look ill! I don’t limp or have obvious physical difficulties.
But, I can’t breathe and I can’t always walk very far. How I look does not reflect on how I am actually feeling. This makes it hard to explain that you are actually ill! Being unable to breathe isn’t obvious.
11. The shrinking of my world
I seem to be getting sicker and sicker. Recovery from an asthma flare-up is getting longer and longer. As I get sicker, more things get added to the list of “can’t do any more.” This is a source of frustration. What I can do is becoming less and less. The number of people I have interactions with is decreasing!
Expectations can really trip me up. This is what has happened to me today. Expectations can be about all the “shoulds” that impinge on me. Then there are the “wants.” What tripped me up today were the “wants.” I wanted a normal day! But my illness flared and that is going to happen repeatedly. I think I need to detach “importance” from plans I make and then, maybe, my reaction won’t be so strong?
Managing my health issues has become my top priority. The state of my health governs every aspect of my life now: where I go, what I do, how I do things, what I can and cannot eat and even when I can eat etc. It wasn’t like this before! This too can be a huge contributor to frustration.
I accept that this day of frustration is perfectly “normal.”
I seem to go through emotional cycles and one part of the cycle is the frustration.
This will pass.
Getty Image by axel2001