Darlene FloydParticipantApril 3, 2018 at 5:55 pmPost count: 2
I was diagnosed in Feb, 2016 with PAH. I also have limited scleroderma, raynaud’s, sjogren’s syndrome, & lipodermatosclerosis. I’m sure I had PAH for several years prior to the diagnosis as the symptoms slowly crept up on me. I just thought my body couldn’t multi-function any more (talk & walk at the same time, eat & breath at the same time). I’ve continued to work as a full time office manager for a law firm. I’m so very tired though. I have no energy for functions after work & have to force myself to do things on the weekend. I’ve told my employer that I may need to go out on disability by Sept. Am I just being lazy? I’m having a hard time justifying all of this in my head. I’ve worked since I was 16, full time by 18, even while going to college, almost 55 now. Financially it will be difficult. Without the stress though, maybe I’ll feel better, I just want to have some fun you know? Friends & family don’t truly understand. Any words of wisdom?
AvaParticipantApril 3, 2018 at 11:57 pmPost count: 26
Let me be clear: You Are Not Lazy!
I was diagnosed with Idiopathic PAH and Right Heart Failure 3 years ago. I am 45, and a retired Australian Army Officer, so I fully understand your work ethic and confusion about what you *should* be doing.
Since my diagnosis I have had a number of ups and downs. Unfortunately, the ‘downs’ inevitably seem to occur because I blame myself (think I’m just being lazy and should just try harder) until I get so sick that it becomes glaringly obvious it’s the PH. I then am kind to myself and do all the right things until I recover, and the next time I start to decline I once again blame myself for not trying hard enough…and the cycle goes on.
It’s only been in the last few months that I’ve finally learnt to recognise that it’s the disease and not my attitude that causes me problems. And I’ve learnt how to pace myself and now accept that if I do a little bit more one day then I’m going to be paying the price for the next 2-3 days. I’ve learnt just how much of a tightrope it is to try and live life to the fullest without tipping over the edge and doing just that bit too much.
I no longer work, although I do approximately 4 hrs/week of volunteer work at a local charity shop, and I manage my church’s website from home on a volunteer basis (another hour or two each week). My last remaining tie to my old, active life is that I sail once a week (which requires a day of rest prior, plus another couple of days recovery) but my doctors are adamant that I should continue to sail as long as possible (even if I do nothing else all week). From a mental health perspective, they understand how important it is for me to do something normal and not be completely constrained by the PH.
I definitely get frustrated by my limitations, and it’s only by focusing on the positives (the things I can still do) that I’m not horribly depressed. But I’m also glad that I don’t have the pressure of employment -because I know that no matter how hard I tried I would fall short. Although paid employment can give a lot of satisfaction and a sense of self-respect and purpose, I think in my case it would just cause stress, anxiety, and depression to be reminded constantly of my limitations, and to struggle so hard to try and perform at the same level I did before the PH.
I am always in awe of those who are able to continue working with PH. But I think it also depends on your specific circumstances. I live alone so a LOT of my energy goes into simply caring for myself -grocery shopping, cooking, doing laundry etc. And I know from experience that when I am busy with other things, I get too tired to cook (for example) and so end up eating something quick, which inevitably contains more salt than usual, which makes me retain fluid, which sees my PH worsen. So I’ve learnt that in order to properly care for myself, I have to prioritise those things concerning my health – my daily walks, shopping for and cooking fresh food, plenty of sleep. I’ve learnt that willpower just isn’t enough anymore – that if I push myself the PH is only going to get worse.
I think that in your case, if you are asking the question about giving up work, then you’ve probably found that it’s getting too hard. Can you explore options regarding part time work? I think part of learning to live with PH is working out your priorities, what you can live without, and what you feel you can’t quite give up yet (like my sailing). The transition is very, very difficult, so I sympathise with your situation. Especially if (like me) you don’t *look* sick – I don’t think I’m fully past the idea yet that people are judging me (eg. If I’m well enough to sail once a week, surely I’m well enough to work part time). My pride is also to blame because I don’t go around advertising my PH or complaining about how sick I am – but those who have seen me on a bad day, or when I have done too much, then understand how difficult things can be for me. So yes, I think all of us have experience with friends and family not fully understanding PH – and just how bad the fatigue can be.
Best of luck, and do let us know how things work out.
Darlene FloydParticipantApril 4, 2018 at 5:54 pmPost count: 2
Thank you Ava for taking the time to “talk” with me. I have found that, like you, if I stay busy one day then I need to rest the next. With working I just don’t have that option. I’m on oxygen so it’s obvious there’s something wrong but I try to not act like there is. So no one realizes when I’m having a really hard day or am exhausted. I’m single but my 85 year old mother lives with me. Financially I am the sole income. Thus another concern and another stress.
For the past 9 months, I work 4 days most weeks and use vacation & sick leave but I still end up working about 36 hours. I’m lucky that the firm has allowed me to do that. Even with an extra day I’m exhausted. On a typical day I feel like I need a nap by the time I’m ready to leave for work in the mornings. I hate that you experience the same exhaustion but it helps knowing that I’m not just getting old & lazy. My mom still makes comments sometimes about me sleeping in late on the weekends. I seldom get more than 6 hours of sleep (yes, also experiencing insomnia) during the work week so Saturday or Sunday is my day to catch up. Being an early bird she can’t relate at all.
I have avoided participating in this site, a psychological ploy to avoid accepting this condition. I know I need the support now though from those who can truly relate to the issues I’m facing. I’ve even gone to a therapist but I left knowing she didn’t have a clue about what I’m mentally & physically dealing with. Sometimes I ask myself how I hit the jackpot of so many rare diseases then I look around & feel bad for that moment of feeling sorry for myself. I still have much to be thankful for. And much to learn from all of you.
Abigail EccherParticipantApril 8, 2018 at 9:17 pmPost count: 2
First of all, please know that the “Is this PH, or am I just being lazy” thought goes through all of our minds more often than we care to admit. It takes time for you (and the others in your life) to realize that the physical symptoms making you feel that way (exhausted, groggy) are your body’s way of telling you to listen and take it easy. I can tell you’re a hard worker, so I’m it has been difficult for you to slow down. Just know that this community is a great place to sound off when you’re having those thoughts/moments, it’s been a huge help for me while adjusting to lifestyle changes.
Also, I can relate to the struggle of juggling work with those physical symptoms. I am a third year law student and still work as a mass tort paralegal, so I understand where you’re coming from. I was diagnosed with idiopathic PAH three years ago while I was in my second year of law school, but struggled for several months trying to get that diagnosis. I completely understand the importance you place on work, and know it’s hard to change our “go-go-go” ways to accommodate PH. I have been researching opportunities to continue my legal career when my physical symptoms become too much, and I’ve found many law firms who will make accommodations for experienced paralegals to work from home. You may ask your firm, or reach out to a Robert Half-type service to see if there are any opportunities out there to work remotely. I did this myself while I was recovering after my diagnosis and I really enjoyed that I could stay home and work when I felt well enough on the days when I needed more time to get moving. If you have any questions about this, you’re more than welcome to email me directly at email@example.com and I would be happy to help you find more resources.
I hope this helps. I know in my case, work was the last thing I wanted to give up because it made me feel that I could still be a part of something “normal”. Thanks to the digitization of the legal world, there are plenty of opportunities to do meaningful work without the struggle of a traditional schedule. Best of luck, and please feel free to reach out to me.
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