Deconditioning due to chronic Lyme

Loss of muscle tone...
Excess fat...
Puffy face...
Scars...
Pimples...
Postural decline...
...all these things and many others...

What can one do about it when chronically fatigued and dealing with horrible neurological symptoms and/or pain??? How do you find the energy, the strenght and the ability to get back on track even somehow?

What depresses me the most right now is that after many years of being sick, my posture has suffered a lot and that not only causes pain and discomfort, but also affects my looks in a dramatic way and thus my self esteem and thus my ability to fight and win...

Any tips on how to lose the excessive fat when feeling like a zombie? There's not a lot of it but muscle would be much better (needed for the posture correction for example).

Feeling so sluggish. Not feeling like me. At all.

Sure I would like to get well first (or atleast a little better) but as we all know: that ain't easy.

goshawk said...
Stepping stones..... one small step at a time.

If you are able , try just doing some chair stretches at first. You can probably google it for a list of them.

Build up the repetitions slowly.

If you are mobile try just walking a little more around the home or outside.

Remember just go slow and easy.

Tell yourself..I can do this, I can and I will and it will help make me stronger... so I can fight the these infections..

Smile at yourself..it is the best thing. We are ill and struggling with these symptoms daily, but you are still you inside. Remember to love yourself and to fight and conquer these infections because you are important and you matter.


Take care, Jo

Thank you for the encouragement, Jo. It's all right what you say. We shall not forget who we are, we shall not give up the fight. Being in my early 20s this just isn't fun... Well, fun this isn't for anybody I know...

I do go for walks a few times a week, even for as long as 10 km (in wintertime it's a lot of work to dress up so there's no point in doing that if you go out for just 15 min.), but it doesn't help as long as it is not done on a regular basis... And that discourages me... How long should I do something before the benefits are being felt/seen?

Same goes with stretching... I might get a burst like hey I'm gonna stretch now... But again it should be done almost everyday and my muscles are so tight that I can't even stretch properly...

Guess I should get some massage but my experience so far is that nobody does their job as they should... And as I am trying to collect money for some intensive Lyme treatment, it doesn't make me smile when I think about the cost of massage therapy... (Again: one or two times do nothing.)

Girlie said...
Eaglet - I don't go for massages...but I do see a Physiotherapist. I found a great one...and she works on me...each visit.
And..the visits are mostly covered with my Blue Cross insurance.


Have you thought about finding a good PT?

Yes, I have tried to get some help from physical therapists but with no success. I tried OMT physio because I was told my atlas is rotated (however, some specialists think this is natural for me) but it didn't help and I was only asked annoying questions out of curiosity... Because my situation seems so poor...

I tried fascia manipulation but it didn't help. I was checked up by a very basic PT but the thing is that nobody really cares... Nobody does their job properly... I know my posture needs fixing, I know there are muscles that need to be strenghtened, I know I have tight chest muscles etc. etc. But nobody helps me even though we've been carrying lots of money to them.

Gotta do it on my own. With no energy. Yeehoo.

I know good PTs do exist (e.g. on YouTube) but I have not come across any yet.

Eaglet said...
Loss of muscle tone...
Excess fat...
Puffy face...
Scars...
Pimples...
Postural decline...
...all these things and many others...

What can one do about it when chronically fatigued and dealing with horrible neurological symptoms and/or pain??? How do you find the energy, the strenght and the ability to get back on track even somehow?

What depresses me the most right now is that after many years of being sick, my posture has suffered a lot and that not only causes pain and discomfort, but also affects my looks in a dramatic way and thus my self esteem and thus my ability to fight and win...

Any tips on how to lose the excessive fat when feeling like a zombie? There's not a lot of it but muscle would be much better (needed for the posture correction for example).

Feeling so sluggish. Not feeling like me. At all.

Sure I would like to get well first (or atleast a little better) but as we all know: that ain't easy.

::hugs::

I feel you.

To top it all off, the PT I saw was convinced that my problems all stemmed from laying around in bed all day (not true) and was determined to "whip me back into shape" (really not good).

As far as excess pounds goes, physiology says that exercise has little impact on the amount of calories "burned" in a day. Being alive with your brain working and your heart pumping burns the vast percentage of calories. So don't feel that because you can't go running for a couple miles every day you're doomed to get fat.

Now, exercise is good, for muscle and bones and all that. It can help people lose weight, though that's mostly only because it causes people to burn through backlogged glycogen (mostly - there's other things going on too). But the point is that "working out" has little direct effect on body fat.

But if you are sedentary, yes, you need a bit fewer daily calories. But you also need nutrition, since you're sick. You may have already worked on your diet, but to reiterate just in case (and for anyone else reading), cut the processed food and junk. That includes nearly all grains - most grains in the supermarket is a processed food, that includes bread. Any vitamins they have are usually added afterwards with the cheapest non-absorb-able (maybe harmful) synthetic crap. You can poke around for real bread if you want (the Ezekiel bread is okay), but I find it easier to just ignore the crap altogether. Embrace, fat - you need fat, including saturated fat. Just skip the processed food crap fat and you'll be fine. Eat eggs fried in coconut oil and avocado and salsa, salad with skin-on chicken with olive oil and vinegar dressing, and then some steak with lots of veggies. Keep it simple.

You can plug everything into myfitnesspal and keep track of where you are. I don't use it every day, but sometimes I put in a sample day just to check. I always go way over on the fat allowance and way under with carbs, but that's what makes me feel best.

For exercise and posture I suggest going slow with things like Tai Chi / Chi Gong, easy pilates, and easy yoga. There's plenty of youtube videos - I use this one /youtu.be/Ac08kMK-dyI. If you're not comfortable going on your own, and can't find a worthwhile PT, look around for a class at a health center. Look for "slow yoga" or chi gong or something else promising to be nice and gentle. Discuss your issues with the instructor and only sign up for a class where you feel comfortable. It may be a much better use of your money.

Plus, you might luck into finding a place that includes a sauna or discounted massages to members. That could be real nice.

For skin issues I've heard of people having luck with betonite clay masks. I've also heard of people having luck with castor oil. There is also MSM lotion - I doubt MSM absorbs through the skin very well, but the lotion I have does brighten my skin and make it look healthier.

There's also mental health, and getting yourself out of the dumps. I don't think I'm the only one who has ever laid in bed feeling sorry for myself and despairing for the future. I find it helpful to do something that I enjoy, like listening to music, or reading a book. Watching a fun movie also counts, but I find that tv/movies feel overwhelming after a little while, so I go easy on that. Give yourself mental permission to take care of yourself and be happy.

I hope this helps a little. Hang in there.