Losing weight with chronic illness/pain/fatigue!

RynnieOrion

Hi! I'm Ryn. I'm 45, I live in NH, I'm a single mom who isn't able to work, and I have about 50 lbs to lose to be at my ideal healthy weight (or 35 to meet my previous average weight). I have no idea how I could have gotten so much bigger in less than a year.

Are you trying to lose weight while pinned under the heavy thumb of a chronic illness? Do you use more spoons for eating than you have "spoons" (Google "spoon theory") for daily activities? Do you start off strong on a good day, just to end up in bed and in agony for the next several days?

Let's get together!

I have Ehlers-Danlos Syndrome, a connective tissue disorder that is the result of faulty collagen; if something is supposed to expand and contract, it will stretch out and eventually stop contracting. (For example, I've had 4 surgeries to shorten my eye muscles, because the tendons became too loose, and I couldn't move my eyes in synchronized, giving me severe double vision.)

EDS causes constant joint subluxations (partial dislocations - like when your back "goes out"), severe fibromyalgia, chronic fatigue, insomnia and non-restorative sleep, adrenaline & other hormonal imbalances, early-onset osteoarthritis, depression (as a symptom, not simply as a result of being ill; our brains are formed in utero with defective "glue," causing depression, anxiety, and even autism), and so much more.

Another condition that coexists with EDS is Chiari Malfunction, which is, to simplify, when YOUR BRAIN FALLS INTO YOUR SPINAL CANAL and compresses your brain stem, screwing up your autonomic nervous system. I had surgery for it 3 years ago, but it's just a treatment, not a cure.

Worst of all for weight gain, EDSers have *major* GI dysfunction, including reflux, delayed gastric emptying, slow intestinal mobility, and IBS. So... the only thing that stops your stomachache is eating, the food moves slowly enough to be in your body for up to a week (letting your guts suck out more and more calories), and to relieve the painful constipation, you have to use medication to induce... um, well... the opposite of constipation.

I'm also completely alone, since it's no fun to be friends or partners with someone who is always sick and cancelling plans. Food is my friend, and I pass the time by eating.

I have a treadmill, but if I do more than half a mile at 1 MPH, I feel like dying the next day.

So even light exercise is incredibly painful and exhausting, my digestive system is sabotaging me, and the extra weight makes everything much worse.

BUT I AM GOING TO DO THIS!!!

I will slip, stumble, fall, fail, and then get up and try it all again. I'd love some company.

kshama2001

Hi Ryn! I lost a husband and two jobs to Multiple Chemical Sensitivities. That was 16 years ago and I am much better now and with a man who is a much better fit. I also have a better job.

Are you familiar with Jon Kabat Zinn's work on Mindfulness Meditation for pain relief? http://www.umassmed.edu/cfm/about-us/people/2-meet-our-faculty/kabat-zinn-profile/

RynnieOrion

I'm so happy for you!

No, I hadn't heard of it. I'll check it out. Thank you!

HippySkoppy

Hi Ryn, I feel for you, what you are suffering with daily truly sounds nightmarish and must be very diffiuclt to live with.

I have CRPS, Lupus (SLE) and for me that causes me to suffer with migraines, adrenal insufficency and many other symptoms that impact, including depression.

I have had success at losing weight and maintaining that loss for 4 years by using the MFP app. and being really commited to as perfect logging as possible. In all seriousness, if you can't exercise that won't impact your ability to lose weight it truly can be done by making sure your CO is bigger than CI.

Exercise is fab for enriching your health and keeping as much muscle and strength intact so as you age you don't get stricken with weak bones and fractures etc. It can also be helpful in easing depression symptoms.

Getting to know how you respond to movement and working within the confines of you condition is an absolute must. I struggle with not overdoing it through frustation and I do understand the situation of exercising one day and for days later paying the price with pain and crushing fatigue.

What I have found that has helped me is changing cardio pursuits to focus more on strength training, Yoga, Tai Chi etc. I don't know if any of these would be possible with your conditon. I too also use meditation regularly to deal with the pain and the psychological side of chronic ill health.

It is so easy to become very isolated with chronic illness. I am blessed to have a loving family around me and IMO the best man in the World as my Hubby, friends wise I am have a relatively tight circle of faithful friends who understand my issues and accept me as I am. Perhaps you could think about engaging in craft, art, Yoga classes or anything else that you are interested in as a way of meeting people and easing your isolation.

I hope I have helped you in some small way, at the very least you know that you aren't alone.
I wish you all the very best.

leanjogreen18

kshama2001 wrote: »

Hi Ryn! I lost a husband and two jobs to Multiple Chemical Sensitivities. That was 16 years ago and I am much better now and with a man who is a much better fit. I also have a better job.

Are you familiar with Jon Kabat Zinn's work on Mindfulness Meditation for pain relief? http://www.umassmed.edu/cfm/about-us/people/2-meet-our-faculty/kabat-zinn-profile/

Big fan of Jon Kabat Zinn!

kshama2001

Speaking of spoon theory, I have uterine fibroids which cause debilitating monthly bleeding. I have to really ration my spoons at that time. Yesterday was Day 3 and I thought I would be able to do both gentle yoga and go food shopping, but couldn't bear the thought of the shopping after the yoga. Fortunately, I always have enough food in the pantry and freezer to get me through.

https://en.wikipedia.org/wiki/Spoon_theory