Navigation

QOL: Does anyone else feel like they’re not themselves?

Hey everyone,

My asthma is back this year with vengeance and I was wondering if anyone else feels like their overall quality of life is significantly impacted when their asthma is more active.

Does anyone else feel exhausted and worn down despite everything they do to take care of their asthma? 

What do you do when you wake up tired (despite a good nights sleep) and you feel like you have just run a a marathon?

How do you get through the times when your body doesn't seem to feel like your own?

How do you know when you are actually getting better, not just having a good day? How do you not overexert yourself on a good day?

Would love some insight.

Love,

Kelly

9
152

Comments 9

  • LK

    Hi Kelly!  

    I have had each of those questions so many times.  You have said it well.

    "My asthma is back this year with vengeance and I was wondering if anyone else feels like their overall quality of life is significantly impacted when their asthma is more active."  -  Definitely!  I have had to make major reductions in what I can do.  

    "Does anyone else feel exhausted and worn down despite everything they do to take care of their asthma?" – Yes, then I know it is time to talk with my pulmonary doctor to see what medicines need to change, if there may be another medical issue that is making my asthma worse or what I need to do differently.  I also have acid reflux and recently my doctor changed my dosage and added a new med for that and in return my asthma has improved since asthma and reflux tend to aggravate each other.

    "What do you do when you wake up tired (despite a good nights sleep) and you feel like you have just run a a marathon?" – Sometimes and, for me, it means that I am breathing poorly throughout the night and need to talk with my pulmonary doctor.

    "How do you get through the times when your body doesn't seem to feel like your own?" – My body hasn't felt like it is my own since I was diagnosed with adult onset, cough variant asthma almost six years ago.  The way I get through it is to come to these forums and "talk" with other people who have severe, uncontrolled asthma like I do.  They are the only ones I know who have severe asthma and truly understand all these questions and how it feels to live with asthma as we have it.  Their support is invaluable to me.

    "How do you know when you are actually getting better, not just having a good day?" – Still working on figuring this one out myself!    There are many, many times when I think I am getting better when I have had a good day or two and then I have a flare.  Which sure takes the wind out of my sails!!  It has gotten so I am afraid to think that I am getting better because I do not want the disappointment, again, of realizing that it was only a good day or two.  I have had to come to the realization that, for now, this is where I am with asthma.

    "How do you not overexert yourself on a good day?" – Still working on this one, too!  It is so very easy to want to do things like we used to be able to do or catch up on things we haven't been able to do when we do feel better.  I have ever so slowly been working on not overdoing on my good days.  The best resource I have found are these forums where I am reminded to pace myself and where others who do understand our limitations share similar stories so I do not feel quite so alone in my "life with asthma" endeavors.

    Have you talked with your doctor to see if you need any changes?  Hope you are feeling better soon!

  • K8sMom2002

    Hugs, Kelly … I think your experience is one that lots of our members can identify with. It's getting to that "new normal" that can stink, and figuring out what it means to have a life with a chronic disorder.

    You're NOT alone … AAFA did a recent research survey, and many, many folks with severe asthma have similar issues. As much as 64% of people with severe asthma said it impacted their relationships. You can read about it here: 

    You asked how to not over-exert on a good day — that is HARD because it feels so good to have energy. 

    Could you decide every night before bed what things are the most important for you to accomplish the next day? Sometimes if I can accomplish the most important of those, whether it's one (on a not-so good day) or a max of the three most important things (on a great day) I feel pretty good and don't surrender to the urge of "just one more thing."

    Lisa has some great tips and insights … one thing I don't want to do is assume that everything is "just because I have asthma." 

    The overall exhaustion or tiredness could be from a lot of things … it's a tricky thing to chase down. But bringing them to your doc's attention is a good thing.

    Could you ask your doc these questions?

    • Do you think a sleep study would help us figure out why I don't feel rested in the AM?
    • Could some of the medications I'm taking cause some of these side effects?
    • What are some other things that we could consider?
      • pulmonary rehab
      • speech therapy to help to see if other issues like vocal cord dysfunction could be a factor
      • reflux meds to see if reflux could be a problem
      • other meds that may be appropriate

    And having a place to vent and get support has been so helpful for me. Another thing that has helped me through rough patches is to keep a journal. Being able to flip back and read through bad days has helped me see trends. 

    Could you focus on trends? For instance, by simply keeping a symptom journal that is really bare-bones —

    • Today is a good day/bad day 
    • Today I've not had to use my rescue inhaler/had to use my rescue inhaler 

    You can look back over it and see whether you've had more good days than bad. 

    That's helped me — and my doc — because we can figure out, okay then this is an issue that is not improving. Or I can see, "Oh, yeah, the changes we made ARE helping … I just need to be more patient."

  • Shea

    Hi 09KellyAnn, 

    I definitely struggle with fatigue from asthma and my chronic allergic disease. I am getting used to it, and others in my life are too– so that helps. I just cannot do what a healthy, easy-breathing, non-allergic, uninflamed, unmedicated person can do, NO DOUBT. But I try to do what I can and focus on that, and I do believe where some doors close, others open– and I see that in some ways asthma and allergies have pushed me into a unique position and that from it, I can accomplish certain things I would not have if my life hadnt spun me around and dropped me on my butt nearly 7 years ago when my diseases onset. So– Im not saying I am happy having these diseases or dealing with the pain and limitations and frustrations and blatant fear and near-deaths (I am definitelt NOT happy about those and I would never have chosen it for myself) BUT … I have to admit I am happy I get to stay at home with my son and not struggle to work and daycare and struggle with keeping the home– instead I eas able to get help and support through disability benefits and my family and I have been able to be a stay-at-home-single-mom (which us very rare). I had my health issues after pregnancy and was struggling in pregnancy and after my son was born trying to balance everything on my own, with little support and many parasitic people in my life– and that is when I think I broke myself– but on breaking myself I have been able to sort of rebuild myself and learn that… Well… Everyone has some sort of limits… And my weaknesses in some areas have allowed me to develop strengths in other areas, and that is not so bad.

    I have seen both myself and others on this forum develop skills and strengths in communication, self-respect and self-care, brave and effective handling of difficult social situations, observation, note-taking, measuring, organizing information to make inferences and predictions about triggers, and find tools to avoid them– it is all quite masterful. I know that things have gotten easier and better and I believe they will continue to as long as I give attention to each flare and what causes it and make plans and learn to feel the constantly-fluctuating bounds of my asthma in its many different states and under different environmental conditions. 

  • Pljohns

    Kelly- for you and hope you are soon feeling better.  To answer your questions, YES  I feel the same type of things you do and struggle to figure it out.  I currently don’t have a good care team so much of my asthma is on me to manage-I’m not a doctor and managing your own asthma isn’t a good thing. 

    Like you, I struggle being tired when I wake up and feeling like it’s the “put one foot in front of the other” and just try to get through it type of thing.  Some days and weeks are better than others but there are days that I just don’t know if I’m going to get through it or not.  Having a good care team that you can talk to is a wonderful suggestion.  A good doctor can talk with you through the exhaustion, the sleep issues and the just not feeling right.  

    I am a notorious data cruncher and note taker-I track my own peak flow numbers and look for trends and when I go to the doctor, I have no more than 3 things I want to discuss with them and I write down what they say.  I can’t tell you how this has helped me when issues arise again.  

    As for the “getting better” or just having a good day-I wish I had an answer for that one.  I struggle with that as well as not over doing it.  I work full time, take care of 2 kids, DH, the house, the yard and pretty much everything else with very little help.  Over doing it is my normal.  I have no doubt that my asthma would be a TON better if I didn’t, but that’s life.  I do strongly believe that pacing yourself and being your own advocate for what you can and can’t do is very important.  I’m getting better with that but telling people NO I can’t do something is just not something I’ve been able to figure out.

    This forum is a wonderful place for support and suggestions.  I honestly don’t know where I’d be if I had not found AAFA and this forum.  

  • 09kellyann

    Thank you all for the great advice and understanding!!! You have inspired me. 

    I have reached out to my doctor and I will be going back to the Pulmonologist to see what we can do in 2 weeks (he's on vacation).  My doctor doubled my corticosteroid about a month ago, but I haven't noticed any relief. I did the sleep study last year when my asthma was cleared up and it seems I sleep perfectly normal. Once I meet with Pulmonary doctor I hope to start Pulmonary Rehab or some other type of program. 

    I'm just really struggling with living life this way. How do you all go to work, make dinner, and clean your house? I really don't know how on earth I am supposed to function. 

    In the meantime, I will try the list idea to help manage my expectations. I think I'll include it as part of my new asthma journal.  I've just always been such a doer, someone people can rely on to help them. I guess I need to learn how to say no more and cancel when I'm not feeling good. 

    BTW, anyone else have brain fog, memory issues, and headaches when their asthma is acting up? 

    On another not, we are moving to Norfolk soon. Does anyone have any Doctors they recommend in the area? 

  • Pljohns

    So glad you have a follow up with pulmo soon.  Hopefully he can get you feeling better.  sometimes it takes trying different medications to find what works best with you.  I know several members, myself included, that have gone through A LOT of different medications until they found what worked best for them.

    You will find what your "new normal" life will be once you feel better.  I think most of us here have had to change our lives somewhat (some more than others) because of what we are and are not able to do any longer.  I've always been a goer and doer too but have had to realize that I can't always do what I want.  I have to do what I can based on how I feel so please don't think you are alone in trying to figure out how to manage.  I work full time outside the home, have a DH and 2 DS's that I have to take care of too and literally everything around the house/yard as well.  It's a challenge and sometimes I don't get it done the way I want it done but I'm learning that it's OK.  Taking care of myself is what's important.

    Good luck with your more!

  • Melissa G

    Kelly, glad you will be having a follow-up with your pulm soon! 

    Have you had extensive blood work done to check your thyroid and vitamin levels etc?