For a week and a half I've felt just a little better. Such relief after months with no break from the never ending flu. So now I'm contending with a body that is easing (hopefully) out of a relapse and is seriously deconditioned.
I had to go out two days ago to pick up my medical compression stockings for POTS. it was about an hour outing. The stockings are way harder to put on than I expected. They take a fair amount of time and strength. They seem to help some with the standing/sitting dizziness which is great. On the other hand, there is increased blood pooling in my arms and hands, and after I take them off, my legs hurt for hours. To be honest, I'm not sure how much I'll use them.
Then yesterday I went on a short outing with the dog.
Today I'm absolutely crashed and ill and miserable. Right back to square one as a reslult of two days with one hour outings....sigh
I really wish there was some help for this illness. I feel so awfully sick and alone. I'm such a solution oriented person I feel like there's got to be something I could take or do that would help.
I also feel so lost with the relapse recovery. Should I just do nothing at all? Should I just lay here everyday all day? How much should I attempt? How do I know if I can do a little more if I never try? On the other hand, how do I avoid these awful crashes?
I want to have a social life, I want to work on my PhD, when I never leave the house I get depressed.
On my bad days I'm seriously considering taking a two or three term medical leave. I'm making no progress on my PhD....I can't justify collecting grant money indefinitely and doing absolutely nothing. Also, I'm no where near well enough to conduct research next summer and there is a fair amount of work I need to do before hand (i.e. now) to make it happen.
Hi upnorth~ So sorry this happened again...going back when you had just regained that window of feeling a tiny bit better..it is not fun at all to have that happen.
ReplyDeleteI really can only think of suggestions or what others have done to help themeselves...One is the heart monitor and what Dr. Klimas is promoting..maybe doing just 1$ more at a time..for a week at a time making sure the level you are at is stable before moving forward. It is hard when what used to work no longer does...
Considering a 2-3 term medical leave must be so hard for you. My hubby says his job right now is to heal....then do more. Not going back to his old life but creating a new one that is sustainable....Only you know what is best for you ~ maybe for now you just need to heal...no pressure...not letting go of your goal but taking a more windy road to it? Maybe..or maybe not
Just know we are supporting you in what you decide is best for you and praying like crazy you see some improvement soon!
Yes, Renee, maybe a heart rate monitor would be one route to monitoring my acitivy and avoiding crashes....on the otherhand, any time I check my pulse not laying down it seems too high...I maybe need to do some reading on this.
ReplyDeleteAnd hopefully this is just a glitch or crash, not a return to full relapse...at least that's what I'm hoping.
As always, thanks for your caring words.
I know you're frustrated. And understandably so. I should think taking leave would be a good move so as to allow you to really relax sans subconscious worry that there is something waiting in the wings to get done. I've been there. It does suck a significant amount of energy just thinking about what needs to get done, especially when you know that what needs to get done will undeniably drain what little reserve you may somehow conjure up; although it seems as though even your reserve is depleted as of late. I think making a definitive decision will really allow you to relax as well as rest. Sure you're resting, but are you relaxed while you're resting. I suspect not.
ReplyDeleteI had a horrible two weeks but then yesterday and today were much, much better. Had you asked me Monday if I thought I'd be able to dress and leave the house Thursday (today) I would have categorically said No Way. I think my B12 helped too though. I skipped two weeks because The Injector (that's what I call her) was out of town. My blood levels of B12 were on the low side, but not depleted, but like I always tell you, it's the B12 in the spinal fluid that applies to those with this disease. Maybe you should look into those. Have you started taking CoQ10 yet? I know we had discussed that at one point. Klimas and Cheney both highly recommend it.
I've often thought of going the heart rate monitor route myself. I think it could really help me keep pace when I'm in a nasty flare. Otherwise, I'm pretty good at pacing. Sometimes the illness just does what it wants to do with no rhyme or reason.
Hang in there and if you can, give yourself a break in the noggin. :)
jenji
Hi Jenji - My heart rate sores even if I just stand up, but keeping track might help me know which things I do are worst on my HR if you know what I mean.
ReplyDeleteI still have the requisition for the blood draw for B12 sitting in my pile...my NP wanted to know my level before she considered shot...she said she still might let me have them if my levels were normal.