When "X" no longer defines you.

[1Dollar93]

I'm sorry to hear about your illness, can you become the guy who swims? Low impact exercise is still important, especially as a place to park your head. Best of luck.

[pdonk]

Just want to revisit this. It's been a hard summer if limited activity. I've ridden a total of 175 km since getting sick. As for defining me, it is hard to look at my bikes and see them not being used. Other defining element of knowledge and collection of bourbon and tequila is also slipping away as it looks like I won't be drinking any time soon. I have not had a drink in 6 months, and am actually fine with this aspect of my life changing.

[buddybikes]

Reading this thread, I need to stop self pitying myself.

That being said, I am awaiting plans for 4th back surgery, third fusion. Add to that 57 years diabetes hitting this body.

I ride 8-12 miles a day, if I ride and add a 1 hr kayak I am toast. Miss days of taking off on bike or long paddle with "good" soreness afterwards

Least I can do bit of each. To those with more severe limitations have "good" e-bike or e-trike (there are some real nice ones out there) in scope?

[pdonk]

The hardest part is I'm sick but with no diagnosis except bad blood markers confirming how I feel. If they csn figure out what's wrong and have a viable plan it will be easier.

If I need to move to an ebike, I will.

[fourflys]

As others have said, I'm really sorry you're going through this and I trust you have a good support network to help you through.

We do, internally, often see ourselves only in a couple dimensions (cyclist, father, etc).. but we truly don't know how others see us until we ask.. and I bet we would be really surprised when we do ask..

I'll share the following clip from Ted Lasso, in it, Roy has just retired from the team after a knee injury and playing for a long time.. for Roy, football defines him.. https://www.youtube.com/watch?v=ku--EowVQlU
** there might be some language, just FYI..

We're all pulling for you, hope you find something more definitive and heal quick!

[bigbill]

Originally Posted by pdonk

The hardest part is I'm sick but with no diagnosis except bad blood markers confirming how I feel. If they csn figure out what's wrong and have a viable plan it will be easier.

If I need to move to an ebike, I will.

About four years ago, I was diagnosed with Undifferentiated Connective Tissue Disease and started taking Hydroxychloroquine twice daily to protect my internal organs from being attacked by my immune system. This disease is much like Lupus (and can develop into Lupus) in that I get periods of fatigue and joint pain about 4-5 times a year. I see a Rheumatologist 4 times a year.

One of my early blood tests showed a monoclonal protein spike (MGUS), a marker for multiple myeloma. It might never progress that far, but I see a Hematologist/Oncologist three times a year for that. If the spike reaches a certain level, then I start chemo. The good news, if I get diagnosed with MM, it will be < stage 1 with a good prognosis. Many people don't know they have MM until a bone breaks.

This stuff is in the back of my mind as I get older, and was one of the drivers for early retirement.

[oldpotatoe]

Originally Posted by pdonk

As per the weught loss thread I am going through a drawn out illness that is likely going to have long term impact on how I define myself as a person.

Specifically, due to the muscle loss and a few other things I probably won't be able to ride this year. Riding my bike has been a constant defining part of me for nearly 35 years. From mountain biking to sitting on boards of directors and city committee to road riding people have always thought of me and know me as someone who rides and likes bikes.

That is going to change, not sure how I'll define myself and how others will see me.

Has this happened to you, and what did you do to help (re)define yourself?

Not sure 'how others see me', if related to a bicycle, is that important. 'Define yourself', yes important but, IMHO, you aren't surgically joined to that thing called a 'bicycle'.

I've been thru this twice..As a 'runner', addicted to it for sure, no doubt about it..but got injured, couldn't run..worried about that but started riding a bike..

But, just a bike...and haven't really ridden since COVID but...of well..still build wheels. Not that big of a deal...

Other time was leaving the USN..as a 'Fighter Pilot'..sometimes we bought into the Tom Cruise BS, but retired, worried about that 'identity'...but transitioning was pretty easy..Now realize that 'identity' was pretty slim and flimsy...easy to forget the 'dark nights and pitching decks', and remember the Ready Room..

But, you'll find something else...I am confident.

[DeBike]

When you label yourself, you negate yourself. Same as labeling others.

[paredown]

Originally Posted by pdonk

Just want to revisit this. It's been a hard summer if limited activity. I've ridden a total of 175 km since getting sick. As for defining me, it is hard to look at my bikes and see them not being used. Other defining element of knowledge and collection of bourbon and tequila is also slipping away as it looks like I won't be drinking any time soon. I have not had a drink in 6 months, and am actually fine with this aspect of my life changing.

I hate to be the broken record, but if they haven't done tests for Lyme disease, insist that they do so (even if you have to pay to have them added to your blood panels). Even for areas that are not hot zones like the NE.

The number of people who have random symptoms that are eventually diagnosed as Lyme are legion, including celebrities like Kris Kristopherson.

Probably close to 12 years ago, I got Lyme--in my case I was "lucky" in that I got the bullseye rash--

Problem being, the Lyme can be in your system for weeks before the rash appears which means it can go anywhere, including your brain. And a large number of people never see the tick, and never get the rash!
I had a number of years of being pretty useless--tired, no bike riding, memory loss, inability to handle stress etc. It also meant no alcohol for me either, along with eating as few sweets as possible (and I have a sweet tooth). The memory loss and brain fog are what seems worse in retrospect. Going forward, you are not aware of diminished capacity; looking back you have the OMG reaction. They now acknowledge that there is "Post Treatment Lyme Syndrome"--and to a layman like me it looks a lot like long-term Covid and other long-term auto-immune diseases. Mine finally "cleared" (for lack of a better word) but I'm definitely slower than I was!

[rallizes]

Originally Posted by paredown

I hate to be the broken record, but if they haven't done tests for Lyme disease, insist that they do so (even if you have to pay to have them added to your blood panels). Even for areas that are not hot zones like the NE.

The number of people who have random symptoms that are eventually diagnosed as Lyme are legion, including celebrities like Kris Kristopherson.

Probably close to 12 years ago, I got Lyme--in my case I was "lucky" in that I got the bullseye rash--

Problem being, the Lyme can be in your system for weeks before the rash appears which means it can go anywhere, including your brain. And a large number of people never see the tick, and never get the rash!
I had a number of years of being pretty useless--tired, no bike riding, memory loss, inability to handle stress etc. It also meant no alcohol for me either, along with eating as few sweets as possible (and I have a sweet tooth). The memory loss and brain fog are what seems worse in retrospect. Going forward, you are not aware of diminished capacity; looking back you have the OMG reaction. They now acknowledge that there is "Post Treatment Lyme Syndrome"--and to a layman like me it looks a lot like long-term Covid and other long-term auto-immune diseases. Mine finally "cleared" (for lack of a better word) but I'm definitely slower than I was!

I believe the OP mentioned losing 35 lbs in 2 weeks. Would such a dramatic loss be somewhat typical with Lyme Disease?

I cannot wrap my head around such a huge loss. How would this happen?

[paredown]

Originally Posted by rallizes

I believe the OP mentioned losing 35 lbs in 2 weeks. Would such a dramatic loss be somewhat typical with Lyme Disease?

I cannot wrap my head around such a huge loss. How would this happen?

I forgot to go back to the beginning of the thread--and you are right, rapid weight loss is not typical of a Lyme infection, although it can cause GI issues, appetite loss and other symptoms that affect appetite and hormonal balance.

I still think it is worth ruling out though--most of us have been active outside for most of our adult life and some of my friends have only figured out years after the fact that this was at the root of other problems they were having.

[pdonk]

Originally Posted by rallizes

I believe the OP mentioned losing 35 lbs in 2 weeks. Would such a dramatic loss be somewhat typical with Lyme Disease?

I cannot wrap my head around such a huge loss. How would this happen?

I didn't eat much, plus daily multiple blood tests, plus stress. The weight loss is what got the dr to take things semi serious. As for Lyme. I'm at a new hospital and will be asking again. Worst case is that we have a trip to Florida planned and will seek out a test there.

[jimcav]

But I wanted to touch on some activity “defining” you versus an activity being an integral part of your life/lifestyle but also having real and significant physiologic impact.
I’d been a runner for over 40 years before long COVID hit me. I’d ridden bikes for nearly 35 ( 5 year break during school and 1st year post-grad).

I’d had short stretches where illness or surgery caused time off, but it was always for a clear reason with clear path back

It wasn’t until long COVID and the loss of running that I realized what a huge impact that had on my well being—it was my stress relief, stabilized my mood, helped me feel connected to the greater world in a spiritual sense. To get all those benefits required me to go at a certain level of effort. Just shuffling along or walking doesn’t do it. I can still enjoy being outside in nature etc, but it isn’t the same.

It is very hard to feel a shadow of yourself and not have a clear understanding of why. A traumatic injury or well-defined illness is easier in some ways perhaps to cope with or adapt to. The uncertainty creates doubt on endpoints and possibilities, which just adds onto the existing frustration and grief for what is lost.

In my mind, it is easier to reshape how you define yourself (career X, then retired), but far far harder to alter what certain things gave you in that emotional/physical/mental/spiritual sense. That loss is hard to take and hard to replace.

I truly hope they figure out your condition and that you find meaningful things you can enjoy doing.

[deluz]

I can sympathize with your situation and feel your pain as I am currently going through something similar. I have had a large number of health problems over the years keeping me off the bike for long periods.

2003 - Diagnosed with Addison's disease, since then I have have periods of feeling good but when I increase my riding duration and intensity I hit a threshold that puts me in a deep state of fatigue and insomnia for months. Doctors have no explanation for it.

2019 to 2021 - I had two different tendon injuries, cause is not known. Did not ride much at all for two years.

2020 - Heart attack, had 4 stents placed.

2022 - Was feeling pretty great but then made the mistake again of riding too hard and fatigue set in.

2023 - Started to feel better but then worse again and had to stop riding. Cardiologist suggested to do an angiogram which was done on August 1 and he found two blocked arteries and got two more stents.

I have not done a real bike ride since March and currently not riding. I am feeling better but not great and started walking and I am up to 45 minutes. Planning to start riding when I get up to 1 hour of walking. I am in no hurry and will probably start with 15 minutes.

Over the past 20 years I have learned some things:

Even very severe symptoms cannot always be diagnosed by doctors. A frequent response I got was "I don't know" or go see a different specialist.
Doing your own research can help but I realize I am not a doctor and the internet is not always a good place to get reliable information so you have to learn to filter it. I find books written by experts are the best source of information. Even though you may never get a diagnosis doesn't mean you should stop seeking one.

When doctors cannot find the cause of symptoms it then becomes more likely it could be a mental problem that involves the brain and nervous system. I believe that could be involved in at least part of my symptoms.
I have been practicing meditation for many years and find it helpful. I use an app on my Iphone called Calm.

When I can't ride I have alternate activities. Walking, swimming, hobbies such as gardening, guitar, woodworking, cooking.

I hope this helps and that your situation improves. It is rare for things not to change over time which is the concept of impermanence.

Good luck

[BryanE]

I ran a the Boston marathon in April 91. The following year had a series of off and on flu like symptoms but kept pushing workouts. May of 92 I had my morning coffee and heart rate spikes to 200. By the end of the day I could barely move. Long story short, Epstein Barr virus that took 14 months to get over. It was horrible. No more 37 minute 10Ks or marathons. My life changed drastically. Keep your head up. You can get thru this.
We have no choice.