August 7, 2018 at 5:47 pm #13188
Lately, I have really missed the distraction that my full time job gave me. Before diagnosis, I was teaching at a middle school as a special education teacher. Although it was extremely taxing on my physical health and I found it really difficult to keep up, it was a great way to get my mind off of my illness and let me put my focus on something other than my health.
For me, taking the focus off of my health for such long hours was also a bad thing. I started to ignore symptoms I was having and this began to build up. Eventually, I was told to leave my full time job and was putting my health at risk. I am currently on full time disability but work part time for Bio News as a column writer, manage the forums , and nanny.
Not going to lie, working part time is even difficult for me, but it is hard to not do anything at all! If I’m not keeping busy with SOMETHING, my mental health suffers and I spend more time thinking about my physical health which leads to even more anxiety. I feel like I am constantly stuck between feeling overly exhausted some days after coming home from being with the kids I nanny and knowing that if I wasn’t with them, I would have a hard time finding a part time job with the same hours and flexibility.
Do you work part time or full time? What is your part time or full time job? Do you feel stuck between being exhausted but at the same time needing your job for the money and your own sanity?
August 8, 2018 at 11:20 am #13203Rosemary MartinParticipant
i work full time – 5 days a week and yes, i am exhausted when i get home. I am on 5 liter concentrator here at the office so it helps.
August 8, 2018 at 11:25 am #13205
I’m glad it helps when you are using your concentrator. I remember working and using the oxygen and still feeling completely wiped out at the end of the day! All i wanted to do was sleep. What do you do for full time work?
August 8, 2018 at 2:25 pm #13206Rosemary MartinParticipant
i am in an office setting – i wear many hats….no one has tripped over my hoses, as yet. Sometimes my job requires me to go out of the office -the extreme heat has made that very difficult.
August 8, 2018 at 5:04 pm #13207
I’m glad you have a job in an office setting and are able to use your oxygen in this type of environment ! But that must be so difficult if you have to get up and move especially going outside. I can’t even step outside for a few minutes lately with this level of humidity! As soon as I do, my symptoms are so severe and I feel just exhausted for the rest of the day. Do they have accomodations for this for you at work ? I know sometimes it can be hard to even talk about what your limits are with an employee. I truly can understand .
August 9, 2018 at 4:05 pm #13221ronald coleParticipant
Dear Brittney my friend,
I have just accepted that entire exhaustion is part of my life going forward.
I think if you have ” must do situations” do them right when you get up if you can.
I find that about noon or 1:00 PM my eyes start to close and my brain malfunctions.
I use Grammarly a free program offered by Google as a way to write a letter that is grammatically correct and fixes all spelling errors, as my mind is just not sharp when I work with total Exhaustion.
Brittney, Most of your writings try to respond to others need, but at the end, you focused on yourself.
I want you to know that “I get you” and I feel your pain girl, I am older and my life has been adventuresome compared to you, I just wish I could make it all go away.
August 9, 2018 at 7:10 pm #13222
Thank you for the response. I get what you mean by the exhaustion and the inability to even think clearly sometimes. It’s good that there are things like those apps out there that can help assist you. I’m glad you are able to find support here. Talking with others and making connections definitely makes me feel less alone in all of this. Hope you continue to keep pushing forward even though it’s hard.
August 9, 2018 at 9:50 am #13214
Good morning all,
I have owned my own home business since 2000 wanted to cso I am full time, I do wedding planning and I also perform some of the ceremonies. Most of the time I am in my home office, BUT the weddings I do are on the beach so 3 – 4 Saturdays a month I am on the beach. We do the set up of chairs and the bamboo canopy (for which I have workers to do it for me). I use my backpack for my bottles for my beach use, (have a concentrator for home/home, office) At first I felt very uncomfortable wearing my oxy performing the weddings, but not anymore. My couples are very gracious and most never say anything, with the exception of one (whose mother) asked me if I had an extra cannula as she had forgotten hers (I always carry new extras) so she could then use her oxy. The only problem I have had is windy days when that sand is blowing like it sometimes does that is rough for me, that and as Rosemary and Brittany said the humidity can be brutal. However my biggest challenge is ME, I love doing my weddings and to be so darn restricted on what I can accomplish really makes me crazy. Wow, I did not mean to ramble on so, but that’s who I am.
August 9, 2018 at 10:02 am #13215
Wow that sounds like such an awesome job and even better that it’s your own business! So you perform too at the weddings !? Are you a singer or do you play an instrument or both!? So cool! It seems like you have great clients who have been understanding and thankful that you are able to be there doing that. I can imagine that it still must be hard wishing that you were able to do more and had the freedom to move as you chose and not be confined to the tank or cannula. That was the hardest part for me as a teacher when I taught with it because it was way easier when i didn’t have it and thinking about that bothered me even though i was still grateful to be doing something.
August 9, 2018 at 10:18 am #13216
Oh Brittany my favorite expression is no I don’t work.. I do weddings, when you do what you love you will never work a day in your life. I sing in a community chorale, but at my weddings I perform the ceremony I am a Minister. I love each and every one of my couples they are so awesome. It has been 18.5 years of FUN…..
August 9, 2018 at 10:19 am #13217
You know I don’t know if I have ever told you but I am on 4 liters at rest and on the beach I go to 5.
August 9, 2018 at 2:33 pm #13218
That sounds awesome! I’m so glad you found your passion and what makes you happy ! That must be so great to share in someone’s special day in that way. 🙂
June 5, 2019 at 10:26 pm #17665Robin WebsterParticipant
I work full time and am the director of a motivational museum. We give tours to area schools and I administer trade school scholarships and teacher grants. I do quite a bit of event planning for our annual fundraiser and induction ceremony, and that takes most of the year to plan as well. I’m very fortunate in that my employer is totally understanding of my various chronic illnesses and doesn’t mind however often I must miss work for doctor appointments, tests, procedures, surgery recovery or just not being well enough to come in. All the board of directors have ever said was “all that matter is that you get better.” Even when I had long stretches of not being able to come in (and I tried to do some work from home when I could) during chemo and radiation for breast cancer, there was never any question of whether I’d get my paycheck. I know most people in the same situations aren’t that fortunate, and I can’t imagine how they handle the stress of worrying over that on top of everything else. The only negative in my situation is that my work does involve a lot of stress, and my stress load contributes greatly to each of my illnesses. I know I probably qualify for disability, but I think still having responsibilities outside the home and feeling like I have a meaningful purpose (other than wife, mom and friend!) is important to my mindset. I’m not sure how long I’ll be able to continue working as things progress, but I’m just taking a “wait and see” attitude.
June 6, 2019 at 11:17 am #17667Colleen SteeleKeymaster
Wow Robin, I am impressed with your ability to work full time in a field that sounds like it requires a lot of responsibility. However, it is obvious how much you enjoy it and how much you are appreciated and respected, which makes all the difference in the world! You are an example of how people struggling with a chronic illness are capable of working and doing their job well. It just takes some compassion and understanding like you are being provided by your employer. That is amazing teamwork all of you have achieved.
I understand the challenges you mentioned in maintaining your career. The “wait and see” attitude is a healthy one. I do hope you can continue with what you love doing for as long as you can, and if the day comes that you need to make a difficult decision about working, may the thought of all that you accomplished be something that sustains you.
I would love to hear the positive influences that working with a chronic disease has had on your job.
June 6, 2019 at 4:24 pm #17684
The fact that you are going through so much and are still working is truly remarkable. I know what you mean about having that feeling of purpose from your job and being able to work outside of the house. I am fortunate to be able to work from home but also like to get out of the house when I can and go do my work at a coffee shop, a library, etc so that it makes me feel like i am getting out of the house for a bit and having responsibilities so I don’t stay in my pajamas all day long. As much as I do like to relax , it still becomes very boring when it’s the only thing I can do. I HATE just “taking it easy “. I feel like that term is just not in my vocabulary. You are doing a pretty amazing job at juggling all of this
June 6, 2019 at 6:54 pm #17686Robin WebsterParticipant
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