Friday, June 11, 2010

HELP !!! haha, did that get your attention?

The first part of my post is a call for help on behalf of Dawn who writes a blog called Daily Life with "Hidden" Chronic Illnesses, please visit her blog here -

Dawn needs some advice from readers in USA. Here is an excerpt from her recent post:
For anyone reading in the US, do you have any experience or advice for proving a claim for CFS under private disability coverage for short term disability coverage (at least for the moment)? Specifically, unfortunately we are covered under the famous company u*n*u*m.

My doctor is very willing to assist with all paperwork and forms, I do have swollen lymph nodes (especially right now), but don't really have any other "markers" - at least that I'm aware of (which granted is limited knowledge).

If anyone has any helpful info then please either visit her blog or post a comment here. Thanks!

Now … what’s up with ME (haha, no pun intended)
My feelings are all over the place this week. One minute I feel hopeful and the next totally hopeless. My sleep has also been total crap this week and that doesn’t help. I find that mornings are generally ok but by evening the nasties that live in my body start to show themselves! By bedtime I am usually really tired but I just don’t want to go to bed because I know it’s going to be hours of not sleeping and I seem to get lots of other yucky things during the night. I can’t really even explain what I mean, I feel freezing but at the same time think I may be too hot and my vision goes all weird and distorted and it’s SCARY!!! Nothing like a bit of FEAR to keep you awake!! Hahaha I’d probably get less spooked if I weren’t here alone, but I am, so bad bloody luck really!

On the upside I have started taking PreDop which seems to be making a difference with brain function and also my general stuff, POTS like symptoms especially. So that is all good news!! I have been this week for more tests to check on HerpesVirus6. I had somehow failed to tell my Dr that I have had Shingles 3 times in the last 18 months, so if my blood shows high levels I may be a candidate for anti virals?? We shall see….

Well that’s about it at the moment I think. Thanks everyone who has been leaving comments … I read them all with joy even if I don’t always get back to you (sorry ) LOL.


  1. Yep, when you are in phase where the sleep is particularly bad then it makes everything else worse and more scary. I expect that being alone doesn't exactly help: there's no distraction and no one to share it all with :O(

    Interesting that you've had shingles 3 times: that's an awful lot in such a short space of time. Did you have any meds for that ? I had shingles 15/16 years ago and had an anti-viral straight away but even so every now and then I get a twinge: only this week I couldn't work out why the skin around my middle felt as if I had been scalded until my partner said it was probably shingles. Went away again after two days.

    Hope you can get some helpful results from the HV6 tests and meds.

    Take care. Great that even though you're so rough at the moment, that you still consider and help others like Dawn.

    Star (*) ;O)

  2. Yeah the shingles thing is interesting, I don't know how I had forgotten to mention it to my Dr. I didn't take any anti virals at the time ... the Dr I was seeing at the time (who I now thing was an idiot) said better to just let the body work it out!!

  3. Mine was just the opposite and my partner who works with blind people shooed me up to the docs straight away because shingles can move to the optic nerve and do all sorts of damage. Think I had acyclovir but it was years ago. Did the job but I do wonder if it kind of left it in my body instead of letting my body work it out so maybe your oter doc wasn't an idiot. Who knows ? Que sera sera....

  4. Feel better, Lee Lee! I might know someone who can aptly advise Dawn. I will let her know, and I will contact this person and forward Dawn's blog to her..

  5. Hello :) New follower to your blog, just joined the (ME/CFS) blogging community myself.

    I started seeing an endocrinologist last September and he recommended that I do hormone replacement therapy since my thyroid levels were out of wack (well, reverse T3 was way too high; testing reverse T3 requires a special test because standard thyroid tests don't check it). It's a relatively new approach, but I feel like it's been helping a little. I'm curious if you've ever tried it. Just thought I'd throw that out there if you want to ask your doctor about it.

  6. G'day Dolce, yeah I did have the extra T3 test etc and actually i went to get re-tested just a few days ago .... just in case something has changed, haven't got the results yet tho. Had a bunch of other tests at the same time - Herpesvirus etc. Regarding the graded exercise (you commented on a previous post), I am still doing it but I had to cut it way down. I was only walking 4 minutes a day but even that was too much, so I now just do what I think I can do. The stretching does sound like a great idea, I had been thinking about it for a while but havent really done any yet. I think you have motivated me haha! I will have a go, it makes sense that it will help, my muscles and bones feel so stiff and constricted, so thanks :-)

  7. I know the dread of going to bed thing. What helped me was resting more. I know it sounds nuts, but I think we need energy to get to sleep properly.

    Yeah, and stretching is very good for us. See if you can invest in a beginner's yoga or pilates DVD. It's very important to stretch the right way otherwise it's useless, or can even do a bit of damage. I've just started stretching regularly again and my sleep has improved overnight. With the stretching you have to learn to breathe properly too. Just lying in bed breathing mindfully can be very calming. John Kabat-Zinn does a great set of meditation CDs with simple yoga also. Go for it - what have you got to lose? :-)

  8. Yeah, I tried the increased walking thing and I couldn't handle it. Pretty much any activity that requires working my muscles is detrimental to the healing process I think. But stretching! It took some experimenting to find out what worked and what didn't which can be a bit difficult, but so very worth it :) When I started, I was tracking each and every step I took in case I take anything extra I can't afford, but I was still able to start with 5-10 min of light stretching and it felt great :)

    I used this video: Yoga to the Rescue - Feel Good from Head to Toe, with Desiree Rumbaugh. Bought it on Amazon.

    I skipped through most of stretches, but I started with some of the floor ones. I couldn't hold the stretch as long as they did, so I just rested the rest of the time, and it was a good way to pace. And they talk about breathing somewhat too on it.

  9. Oooh, and to add (haha, sorry!) my theory with this whole stretching thing is that the -best- solution would be to have someone gently stretch your arms/legs/whathaveyou FOR you. This way you're not expending any energy yourself and the muscle gets stretched still. So if you have someone you feel comfortable with doing it, that could be a good solution if you feel like you can't do it on your own. :)

  10. Thanks Lee Lee for your help (Big Hugs) - especially with all that you have going on as well.

    I also get the change in body temp - my daughter asked me the other day if I was going through the "change of life" - LOL - I'm still a bit young for that. It's quite dramatic to go from literally shivering under the covers to tossing them off because you feel as if you might die from overheating (all in 5 minutes or less).

    As for the stretching, I also think it's a good idea - but take it slowly - (like everything else in our lives) - so as to not overdo it.

    Thinking of you XX

  11. I get the night temp changes too, but not the vision stuff. It is so hard to figure out how much clothing and blankets I'll need, and yes, cold and hot at the same time... how does that work, lol? My partner has really bad insomnia so he often can't get to sleep until around sunrise.

    I can stretch on a good day but on a bad one any kind of muscle work is too much. The amount of exercise I can handle seems to vary pretty wildly. I take baths in epsom salts and that seems to make my muscles feel a lot better. I also started taking way more salt and eating it in capsules, which I really feel is creating an improvement.

    Take care!


  12. Oh I am glad I am not alone with the temperature changes thing ... It really sucks and I wasn't sure if it was just me or not??

    Dawn, I do hope someone has some useful info for you??!! Good luck :-)