Anyone Dealing with Chronic Illness?

[Bethersonton]

Hopefully I'm putting this in the right place!

Let me get right to it: I have endometriosis (general symptoms: severe pain+fatigue) and it moderately to severely affects my earning/working ability. I'm doing the best I can right now to measure out my energy, etc, and only recently started a new job that thankfully is incredibly flexible.

I see people on here talking about working 40-50 hour weeks and taking on overtime when they can; I am aiming for 30 hours but at the moment 20 is a bit of a challenge that I am working through diligently. From reading the journals here it generally seems like a group of able-bodied people, but I was wondering if anyone else is dealing with a chronic illness and is on the journey to FIRE?

(Btw, not complaining or expecting my illness to limit FIRE; on the contrary, it's the major reason I'm working towards it).

[MacGyverIt]

Bethersonton,

I've got health issues as well and applaud you for your willingness to ask for advice and suggestions. One thing I've done which did put some temporary hurt on my savings but I considered a long term investment was to see a CNHP-certified (Certified Natural Health Professional) Naturopath to help me where conventional doctors (even very good ones) were missing some important tests and data points. The non-big pharma approach to health improvement required as much if not more time with study and research as does The Way of the Mustache. (Googled a bit and found this inspirational story: http://www.drmcdougall.com/health/education/health-science/stars/stars-written/paula/ )

Great to hear you have a flexible part time gig. Assuming your mobility is limited, there could be home/computer-based options for you based upon your skill set. Or pet sitting (if you have a yard), writing/editing, etc.

Perhaps if you could mention some of your skills so we can help out with more specific ideas and suggestions for you?

- Mac

[rubybeth]

I'm not dealing with a chronic illness, but my sister is (Type 1 diabetic) and she plans to retire early. She has good days and bad days (with lots of high and low blood sugars), but she works for a school so has the benefit of being salaried and has a good amount of sick days, plus all the time off at winter break and during the summer. She does pick up extra shifts by helping out with school dances and things where she can make a bit more on top of her salary, but maybe only once per month. Another benefit of working for a school is the good health insurance coverage. If she had to have a HDHP like I do, it would be very difficult for her to save anything each month.

[mollyjade]

I have type 1 diabetes. It doesn't really restrict me from working extra. It did restrict where I could work/intern when I was first starting my career since I needed to work for a company large enough to have health insurance, though that's not an issue anymore with the new healthcare laws.

It also affects my budget since I spend a few thousand dollars on prescriptions and copays a year, even though I have very good insurance that my company pays for entirely.

[HappierAtHome]

Yep. Diagnosed with "probably" lupus earlier this year (may never get a 100% confirmed diagnosis as I don't produce inflammatory blood markers, which is surprisingly common).

What it means for my health: fatigue, fatigue and more fatigue. Muscle and joint pain. I get sick easily - catch anything that's going around. I started meds about six weeks ago that take ~ two months to kick in, so I don't know if I'll suddenly feel wonderful at some point in the near future. I have a very mild case - people still can, and do, die of lupus, especially if they don't get diagnosed before the disease progresses. I am extremely lucky to "only" have the level of illness that I have. It's a disease with non-linear progression and each person is different, so it's hard to know what the future holds for my health.

What it means for my ability to work: at the moment I'm full time and just taking the occasional day off as I wait for my meds to kick in. If once the meds are working, I still feel so tired all the time, I'll consider dropping down to a nine day fortnight or four day week. I'm lucky in that my employer doesn't encourage working more than 40 hours a week anyway and is supportive of part time work. I imagine it would be a lot harder with an organisation that didn't want to work with you to manage the issues well.

What it means for my budget: I estimated this on my journal and now can't remember, but I'm at about 83% savings rate at the moment and I think I predicted that my illness will only cost me a few thousand at most per year. Which isn't too bad. Even if I dropped to four days a week of work, I'm sure I could maintain a 75% savings rate, possibly even 80%. So it's not too bad. I have the advantage of being a high income earner and having developed enough competency to be able to do my role well despite illness, otherwise this could impact more.

What it means for FIRE: more motivation, as I don't take it for granted that my health will always be good enough for me to work. On the flipside, people with lupus often become socially isolated because it's too damn hard to leave the house when you don't have to and your body feels like you've been run over by a truck... so that makes me think that I may continue part time work until traditional retirement age, as it forces me to leave the house and talk to people all day. I don't anticipate having a lot of any friends retiring early, so the possibility of being isolated and lonely after FIRE is one I take seriously and would take steps, whether it's paid work or something else entirely, to avoid.

[milla]

My husband has... well, who knows what he has. All we know is how it affects him. He has the worst immune system ever. A gazillion allergies, chronic fatigue... something is weird about his muscle contraction, smooth, cardiac and skeletal muscle. Nobody knows exactly what. Sometimes they call it "fibromyalgia" and offer him pain meds, he doesn't want pain meds, he's not in pain...
Anyway, he works 25 hours a week right now at a pretty cushy sit down job. The rest of the time he does fairly physical work at home, gardening, construction, he and his brother in law occasionally build cabinets or a piece of furniture for someone. He needs to be able to sleep a lot and we don't do overtime any more. Over the years we've figured out it's not worth it. We've figured out ways to help him through diet and exercise (imagine that!) and environmental controls. He is not a healthy guy and realistically, he does not have a long life expectancy. We want him done with work at age 40. I'll work longer than that most likely because we already have kids and we are doing both things at the same time. But no, no overtime here. Not even full time.

[Bethersonton]

Thank you all so much for your answers!

@MacGyverIt: I always hear of people getting part-time online writing gigs but they never fully say how they do it or from where they get the work. Writing is one of my strongest skills; I was even just published in a printed magazine which was incredibly exciting (unpaid but a lot of honor). I'm open for suggestions in that area for sure! As for health care providers, I am seeing a holistic physician (who happens to be my boss) and she's working with me not only on treating the symptoms but trying to find an underlying cause. It's really frustrating having a female-only disease; women's medicinal research didn't even start until the 1980s. There is very, very little that anyone knows about endometriosis in the Western world or otherwise. I did acupuncture for awhile but the cost was so high ($400/mo) and I felt like I was no longer seeing results.

@rubybeth: Speaking of health insurance, I'm thrilled to report that after 2.5 years without it, I finally am insured thanks to the ACA provision on pre-existing conditions. I was uninsurable due to my illness and am so relieved now to have just a catastrophic health insurance plan.

@mollyjade: Right now I'm spending a decent amount per month on supplements and paid $500 last year for a single doctor's appointment, so I definitely understand having to add a few extra $$$ a year for illness. The message for healthy people? Don't take your health for granted.

@HappieratHome: I found your journal yesterday which prompted me to ask this question. I'm in my mid-20s, so I was strangely relieved to see another young female talking about fatigue+chronic illness. Way to go on your amazing savings rate. I understand being socially isolated. Thankfully I'm an introvert, I'm friends with my employers, and I have a husband who I love being around. But it's hard to have to cancel on people so often when I'm not feeling well. There's a great forum I joined called "Sustainably Creative" which is filled with people with chronic illness that causes fatigue. It's really supportive and the guy who runs it has a ton of tips on how to deal with limited energy.

@Milla: Sorry to hear about your husband. There are few things worse than not feeling well and not having a label for why you are feeling badly. I had a physician basically laugh me out of her office when I was a teenager in severe pain and the memory of it still pisses me off.

Just hearing I am not alone has helped me a ton. It's motivated me to find other ways to get my hands on some cash without having to get up from a computer.

[Elaine]

Not an illness but I have a severe physical disability which causes chronic pain in varying degrees on different days. Basically it's a really rare form of scoliosis, lots of people who have scoliosis experience very few ill effects- basically I have the one in a billion turbo charged version. In fact, I've never met anyone who has exactly what I have (even online)! I had lots and lots of surgery when I was younger, but because of the extreme nature of my spinal curve they were unable to correct it fully (they even removed five ribs on one side because they were curling in and crushing my organs- and guess what, they grow back, that is very painful). So in addition to the whole metal in my spine I still have a strong curve- in fact my curve post surgery is still larger than the average person with scoliosis has pre-surgery!

I've had it since I was 12 so I don't really remember a time without it anymore. Spinal surgery is not very advanced when you compare it to other medical procedures. There's basically very little known on why it's so unsuccessful and causes so much pain. I think it's hard sometimes because it can feel lonely- people can only conceptualize pain up to the point that they have felt themselves (I am certain of this), so I often feel like people don't really understand this one part about me that makes me quite different. I can never go without health insurance, which I have through my job. Sitting all day in an office is hard for me- sitting hurts me more than standing/walking around. Weather effects it, and then sometimes I just have a random bout of lots and lots of pain and I have to call out of work. I do know that working out a lot helps, having a strong core and doing flexibility training helps. One of my favorite things about my job is the amount of leave I get, and how chill everyone is with me calling out (which I do probably 2 times a month at least).

I know it sounds really weird but I actually feel kind of lucky. I think it's easier for people like me who have had things like this their whole lives because I don't remember not having it. I think it would be harder to be an adult and then suddenly be hit with something. Also, I think experiencing extremely high amounts of pain chronically gives me a perspective that most people my age don't have- and that most people many years older than me don't have. I appreciate life in a way that other people seem unable to. I love every day so passionately because I understand how uncertain things are, and how quickly they can be taken from you. I have no fear of old age or death (I almost start laughing hysterically when people talk about how hard it is leaving your 20s and being in your 30s). I never had most teenage/20s life crisis issues, because by the time I was that age I was sort of past that already. It wasn't always easy for me to deal with, I definitely spent years being bitter and very, very angry (age 12-18 probably), but now I see that this is kind of a bizarre gift. I know that when my life is over I will be able to look back and say, "my god that was fun, and I truly appreciated every minute of it." 

Edited to add: All of this is a major reason I want to retire early. I work full-time now, basically I always have pain so I just go to work whether it hurts or not- except when it becomes so bad that I can't move, then I call out and take pain pills. In a couple of years when my fella is out of school I may switch to part time work, or try to do something where I can work from home. He's totally fine with it adding a few more years to his working life since he knows how hard it can be for me. That's why I'm all too happy to help him through college and help cover some of the bigger bills for now- I know that it will all come back around. I am seriously lucky to have a partner in all this!

[SpinGeek]

@Bethersonton - You have my sympathies with the endo -- it took me 15 years to get a diagnosis and to get my doctors to take it seriously. I called it being hijacked by my body, because I was never sure when the symptoms would flare and make leaving the house impossible. Add in nearly constant pain, and it just wears you down. I could count on missing at least two days of work a month, and if I didn't stay home, I was pretty useless in the office from the brain fog. I put up with it until I was 35, then insisted on a hysterectomy. I now have my life back. I know it isn't a solution that everyone with endo wants to embrace, but 20 years was enough for me.

I'm working toward FIRE more for my husband's sake. He's older and has already had one heart attack at 53. Unlike me with a cushy desk job, he has a very physical job that I'm not sure he's going to be able to maintain to age 65. And I want as much time with him as I can get, so I'm hoping to semi-retire when he quits. Losing 15 years of full-time earnings is a great incentive to increase our savings rate.

[read books]

Regarding how to earn money writing: check out Writer's Market (North Light Books). It's updated every year.

[Thegoblinchief]

Not quite a chronic illness, but I have chronic nerve pain from RSI in wrists and pinched nerve in my neck that radiates up and down spine. First flared up really bad when I was in grad school. So bad that I dropped out and never went back, because once I got better I realized that I didn't want to finish the degree (sigh, $30K down the toilet...).

Flared up again 18 months or so ago. Lucked out and ended up in a multi-discipline spine clinic that has gotten me down to zero/low pain level. All of this is complicated by mild cerebral palsy that doesn't affect my life much, but it amplifies nerve-related pain by a factor of 10x. Despite having pain really high on the subjective scale, I was never a good candidate for corrective surgery because the actual physical damage wasn't very high.

I'll +1 what Elaine said. Not sure about your condition, but it makes exercise and eating right SO important.

[Bethersonton]

@Elaine-I am seriously lucky to have my husband as well. I literally do not know what I would do without his support. I'm empathetic to your pain. Your talking about not being afraid of aging or dying etc, I can completely relate. For me, it wasn't until I became an atheist that I was finally able to let go of my anger surrounding my disease. I used to "carry it" like a burden, because being formerly religious, I thought it had been "given to me" as a "test". The relief I feel now is incalculable. Also, the days I am not in pain or tired I appreciate so much more. Everything is heightened (good and bad) when you cannot take your health for granted.

@SpinGeek-well, you've certainly described my situation. Exactly. Being worn down by the pain is the hardest part. On good months I only have 25 days in between week-long bouts of fatigue and pain. I'm only 25 y.o., and we aren't entirely decided on the kid thing quite yet, but I know I will have a hysterectomy sooner rather than later. My mom had one in her early 30s. Thanks for your story, it really helps me quite a bit.

@readbooks-Thank you! I checked it out and am definitely going to pursue that.

@thegoblinchief-I think one of the unintended benefits of having a chronic illness is that I am so much more in tune with my body than the average person. Diet and exercise affect me hugely and I eat better than most people (processed sugar immediately causes me pain so I avoid it). I'm still experimenting with which exercises energize me versus wear me out. It's an ongoing experiment.

Thanks again to everyone, this has been a huge help.

[BrooklineBiker]

Hopefully I'm putting this in the right place!

Let me get right to it: I have endometriosis (general symptoms: severe pain+fatigue) and it moderately to severely affects my earning/working ability. I'm doing the best I can right now to measure out my energy, etc, and only recently started a new job that thankfully is incredibly flexible.

I see people on here talking about working 40-50 hour weeks and taking on overtime when they can; I am aiming for 30 hours but at the moment 20 is a bit of a challenge that I am working through diligently. From reading the journals here it generally seems like a group of able-bodied people, but I was wondering if anyone else is dealing with a chronic illness and is on the journey to FIRE?

(Btw, not complaining or expecting my illness to limit FIRE; on the contrary, it's the major reason I'm working towards it).

Hi Bethseronton,
I am sorry to read of your troubles. Unfortunately, I have some chronic autoimmune issues. I am deeply concerned about my ability to retire. Unlike you, my spouse is not at all supportive, I have two very young children, my wife is a devout consumerist and budget-phobic (I used to be as well and am trying hard to reform), our savings are thin, and my wife’s job is pretty insecure (she makes more than I do – ugh). Thus, I have multiple layers of complexity on my end. Here are some things I have done that have helped:
• Prioritize ruthlessly. Take care of the medical matters and financial piece. Everything else must be secondary.
• Try to find a functional medicine medical doctor. If you find a good one, the tests he/ she runs are an investment in your future.
• Work your core muscles and push aerobics as much as your time and energy permit. That will vent stress and keep you strong.
• If you can find a local college where physical therapists in training provide discounted personal training, try to get some good personal training on the cheap. Physical therapists paid by insurance often believe they work for your insurer, not you, and work to your insurer’s timetable, not your body’s.
• Specialist medical doctors may help but they focus on small pieces of your condition. A good primary care MD can really help you. I have had little luck finding one.
• A good whole foods diet can help you and is worth the time and trouble to stay on one. However it has to be the right diet. For example, I was advised by a good well-meaning doctors and nutritionists to follow Dr. Andrew Weil’s whole foods diet. Dr. Weil recommends eating lots of soy products and whole wheat. Many of my symptoms got much worse thereafter. Subsequent tests for food allergies revealed I am very allergic to/ intolerant of soy and wheat (among other things).
• Have the functional medicine doctor check you out for IGG food allergies, parasites, candida, and any other non-traditional stuff you can be checked out for. Traditional medicine will miss that stuff. You may have to hit multiple problem areas to arrest symptoms or see improvement.
• If you are going to be home a lot, invest in a home gym set up. Pilates balls, bands, cords, light weight dumbbells, foam rollers, and the like are relatively cheap but will give you strong core and stabilizing muscles.
• Biking and walking – as much as you can stand of either – at a good pace for chores will help a lot with aerobics at nominal cost. Get winter walking and riding gear if you need it. It will be cheaper in terms of time and money than a gym membership.

Please feel free to PM me if you wish to brainstorm, commiserate, etc.