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 13, 2020 at 11:15 am #25713TraceyParticipant
This forum and particularly this topic couldn’t have been more timely for me.
I was brought up with a very strong work ethic and have always been taught that I have to make my own way in life.
I have had my own business since 2000 and have given every ounce of my soul to making it work and succeed. I love the work I do and even more enjoy the team I work with. I have worked incredibly hard to get to where I am, and now realise that it has been to my own detriment. I am always so determined that I will not be seen to be ill that I have definitely worked at times when I should have been tucked up in bed.
I now find myself in the situation that I just simply cannot carry on working. No matter how much I want to, and I want to very badly, I just cannot do it. I get up in the morning with all good intentions, check my emails and then check out. I am not able to perform at my peak and it is not fair to my clients or my team to continue working.
I’m now working only as a senior technical consultant but it seems I trained my staff too well, they dont need to consult me. We all check in with each other once a day but that’s the extent.
And the truth is I know that I am just too tired to try anymore. I sit on my patio and chat to friends or just enjoy the dogs, and funnily enough that is enough for me now. The over achiever, control freak has given in to her body.
June 13, 2020 at 12:08 pm #25714Robin WebsterParticipant
The pandemic and subsequent shutdown have really put me in a very different place on this topic. I’ve been working since I was 15 years old, held down three jobs while I was in college, worked like crazy at every career I’ve had since then. I have loved the job I’ve been in the past 14 years, and I’ve kept at it full time even the past several years while dealing with PH, breast cancer, primary biliary cholangitis and a host of other medical misadventures. But since my office shut down, as I’ve technically worked on and off from home (but mostly just rested and enjoyed my quiet little life) — I’ve realized so much this past three months that when I am free to listen to my body and give it what it needs when it needs it … well, I am better. So much better. I knew stress was playing a big role in my health. I knew I often (almost every day) pushed myself hard to do things my body didn’t feel up to doing. Oddly, I thought it was keeping me going, keeping me alive, keeping me distracted from my worries. I knew it took longer and longer for me to “recover” when I pushed too hard for big events. It’s hard for me to voice it now to family and friends who identify me by what I do and who fully expect me to keep doing it. But the truth is that I don’t want to return to work as it was before. I might be willing to still work part-time from home. I don’t know how to move forward when the time comes. I don’t know if I should seek disability. It seems daunting to try to navigate that. I have avoided it partly because I know even though I would most likely qualify, I don’t want to feel that I’ve labeled myself as “not able.” And I hate the thought of the reduced income. But if I am able to stay home and continue daily life as I have been, I wonder if it just might extend my life significantly. Of course I want that, because I have two daughters and want to live to see grandchildren someday, even if it means some level of personal sacrifice now. I suspect lots of people with chronic illness are having a lot of these confusing thoughts and feelings right now. (P.S. I haven’t been on this forum for quite a long time due to some major medical problems just prior to the pandemic, so I hope everyone is doing well and has avoided additional medical problems.)
June 14, 2020 at 1:58 pm #25737
Hi @traceyaustralianmigration-co-za, I am happy that you are enjoying the forums. I am sorry to hear about you and the ability to work. It sounds like you have created a fantastic company, and team, as you mention, can function without you there. That, in itself, is an accomplishment.
I worked FT as a nurse before PH and always worked overtime. My medical team will not allow me to work FT again and not in nursing. I am fortunate that I can work from home while helping others in the PH community. It would not be as easy if I did not work for a company that understands rare diseases and the appointments, etc. that we juggle. I am blessed.
It is inspiring that you have found peace in resting and enjoying what you can do. Stress from specific jobs can undoubtedly impact our health. Kudos to you, this is a huge win that needs to be shared in our weekly wins section!
June 14, 2020 at 2:06 pm #25738
Hi @robin-webster, welcome back! I am sorry to hear about the new medical issues. I hope that you are doing better today.
I can relate to some of your comment. I hate saying No and did not for years. After 15 years with PH, I finally started saying NO without so much guilt. It is not easy, but I often know it is for my health. I also think working some helps distract me from the truth of my illnesses. It is excellent in so many ways, too.
I am sorry that you now realize how much stress your FT job was adding. Often, when one is forced to do something, we learn from it. It sounds like you learned a great deal during this pandemic. I realize that this is not easy for you, I am sure you will adjust in time. I am hopeful that you can find something that you feel is purposeful and enjoy it even if only PT.
Like you, my young adult daughter is now married, and I am hoping to see grandkids one day. In this case, I do not feel as guilty for saying no to things when I know that I need rest. Don’t get me wrong. I still tend to fall in that, “I can do anything” mode, and that only adds to my health issues later. I am sending you big hugs- so true this time can offer such confusion in our emotions.
June 15, 2020 at 3:13 pm #25757Colleen SteeleKeymaster
@traceyaustralianmigration-co-za the church I attend has a bereavement group and they make a point of welcoming people who have experienced ANY type of loss, jobs included. Your career has been very important to you so it would only be natural that you are grieving having to take a step back from the responsibilities you enjoyed.
It sounds like you are headed in the right direction and turning your grief into acceptance…even pleasure. I hope you keep enjoying your friends, dog and patio and most of all, appreciate the work you accomplished in the past. Don’t let your loss take those memories from you. You have a lot to be proud of and you always should be.
@robin-webster as you face difficult decisions ahead I hope you can peacefully come to terms with the path you take. My heart goes out to you, it really does. What you and Tracey said are so similar in regard to feeling better when you give your body the rest it needs. Maybe the perks of having to stay home these past few months is the chance to experience what a new normal like that would feel like.
June 18, 2020 at 5:26 pm #25816Nathan YoungParticipant
Like many of you when I was diagnosed in 2009 I was forced to quit my job which was a major blow to my self-esteem and male ego. I obtained my first job when I turned 16 back in 1990 and over my working life I never took a vacation as all of the jobs I had at the time never really gave me the luxury to do so.
It wasn’t until 2009 that I finally had the chance to take my first real vacation to go to Puerto Rico to visit my wife’s family. At that time we were not married yet. While I was there I fell extremely ill and landed in 3 different emergency rooms before I made the decision to fly back to my childhood home in Kansas City, MO where I was diagnosed with Pulmonary Hypertension.
I spent almost 10 years pretty much waiting to die as all of my doctors were telling me and my wife that the outlook with PAH was extremely bleak and the chances that I would die were extremely high.
It wasn’t until late 2017 when me and my wife moved to St. Augustine, FL I decided that I was no longer going to let my health dictate my life. However, the choice to go back to work did not go over well with my wife as she was terrified that something would happen to me while I was at work and she wouldn’t be around to deal with first responders to educate them on my condition. She had every right to be worried as she had already almost lost me 3 different times and 2 of those were because medical staff were not educated about PAH.
After much debate I obtained my life and health licenses as insurance can be sold remotely in a home office or bedroom. My first year I did a temporary gig selling for Kaiser via inbound calls remotely in my home office. Fast forward to now most insurance companies like United Healthcare, Aetna, Humana, Foresters, Gerber and the list goes on are now hiring insurance agents to work from home.
The ability to work from home was one of the major factors on my decision to get into insurance not to mention you can make a lot of money doing it on a part time basis especially if your an independent agent as it lets you build your book of business as you earn advanced commissions and renewals for the life of the policy.
I opened my own virtual insurance agency that is licensed in multiple states and all of my agents work remotely from the comfort of their own homes. Due to Covid-19 its more appealing than ever especially for people like us who are extremely high risk.
With all of that said it was the best thing I ever did as I’m no longer sitting at home thinking about my illness as it is also giving me back my life, my sanity, and my pride as I’m able to keep busy rather than sitting around and doing nothing while waiting to die. Life is for Living and as we all know life is extremely short and precious and we should make each day the best we can.
If anyone is thinking about working from home let me know regardless if you want to do insurance or you want to work for a Fortune 500 company like American Express let me know. I have a list of companies that hire people to work from home. The list is free to anyone as it was what I compiled before deciding to get into insurance.
Till then I hope every one stays safe. Much Aloha to you all.
June 18, 2020 at 5:38 pm #25817
Hi @nathan-young, welcome. It sounds like you have had quite the journey with PH. I am sorry to hear about the struggles. It seems like you made a great decision to move to Florida. How is your Letairis working for you now? Have you been on any other PH treatments?
I am happy to hear that you have found working in insurance helps you to keep your sanity. I think that working from home, especially during this time, is the best thing for those of us with PH. I can relate to working some help you not to focus on your PH. It offers you more purpose. I find that working PT at home can benefit my health in many ways.
As you said, life is for living. Those of us who can work from home or outside the home are fortunate. Your wife sounds lovely and caring. Take care,
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