I have fallen into such a major crash that I am no longer able to work at this time.
Since my lumbar puncture and subsequent blood patch (see previous posts regarding the Georgetown CFS study for background info), I have been running constant low-grade fevers and been extraordinarily weak. I have been sleeping 10-12 hours per night and have needed another 3-6 hours worth of naps each day. And I'm still exhausted.
I've been plagued with daily headaches ranging from dull aches to full-on migraines. The lymph nodes in my neck and armpits have recently become more sensitive, and my throat has hurt for the past couple of days.
In short, I'm a physical mess.
I haven't left the house since I flew back home from Washington, DC on Saturday. My wonderful and loving husband, Kenny, has been taking care of me. He has picked up where my parents left off. It is fortunate that he has this week off from work. Kenny has been preparing all my meals and even helps me sit up in bed when I'm feeling extremely weak.
About half of my waking hours are spent lying down. The rest are spent sitting. I'd say I have about three or four good hours a day at most when I can think clearly and feel almost human.
I was at Georgetown University Hospital on Friday (my third visit in a week due to my continued fevers, headaches, and general crappiness), and I asked the doctor (a CFS expert, by the way) if he thought I should take a temporary leave of absence or work part time for a while. He looked me in the eye and said I should not go back to work until January.
I was shocked that he would suggest such a long period of time. At the time I asked the question I knew I was bad off, but I didn't think I was that bad off. This was me in denial. Thank goodness the Georgetown doc saw through my nearly always smiling "I'm ok" exterior to see that I was not ok.
I haven't been this sick in years.
I am now filing for short term disability.
The process is a bit convoluted if you ask me. An outside company will be deciding (a) whether or not to approve my disability claim and (b) if they approve it, they will decide how long I will be allowed to stay out of work. Even though the doctor has recommended I not go back until January, this outside company could say I need to go back immediately.
Despite all the insanity, I do not regret volunteering for the research study. In fact, I told the research team that if they have any future CFS studies, I would be ready and willing to volunteer.
I will be seeing my regular doctor on Wednesday. I have a lot to discuss with her, but I'll save this topic for another post.
Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 99.6, generally fevery feeling, headache, migraine earlier today, nausea.
Mood (10 is best): 4
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5
14 comments:
Oh hon, I really feel for you! But I'm glad that you're taking the time to take care of yourself. I've worried that you were pushing yourself too hard. You're a lot like I was back in college, so determined to be productive, because I knew nothing else, that I didn't even realize how sick I was and what I was doing to my body. I never came back from it and truly regret driving my body into the ground like I did. So it's good that you caught yourself, even thought it really sucks.
*nodnod* ... I don't have ME/CFS, but I've heard/read enough bad stories that start "I tried to push through it ..." to know it's a bad idea.
Take as much time as you need.
It may be that taking part in the study has been your 'last straw' event. I reached the point you are at now five years ago.
Surrendering does not mean giving up. It is a change, and a necessary one. When you surrender you can start a process of acceptance which will then allow you to work on your recovery.
You could have chosen to ignore the doc's advice but you didn't. Now rest, rest, rest. Big hugs from across the ocean.
Hey Alyson, just read your post. Huge hug! You're an inspiration, you really are. X
Hang in there, Alyson. You would definitely be wise to listen to your body (and your doctor) and take some time off from work so you can heal. Hugs to you!
I am surprised and amazed at your strength of spirit to have worked so long despite being sick. (At the same time I know how important it can be to feel as if you're doing something). I hope if you take some time to improve you feel better soon - improve quickly. Be good to yourself in the meantime...Sometimes when I'm really crashed, for instance, I give myself treats....(a little chocolate, watch my favourite movie). I'm sending good thoughts your way.
Oh Alyson.... I'm sorry to hear that things have reached this point. I think it's a really good idea though that you are taking some 'much needed' time out from work. I know how very difficult and stressful this can be.
Now you can take the time to do everything your body is requesting you do.
Rest well Alyson. I will be thinking of you. xx
I am so sorry to hear that you are experiencing such a big setback. It definitely sounds like a good idea to take some time to heal. I hope short-term diability comes through for you! Just be careful what you post on online if you're on disability! A Canadian woman just got her benefits cut-off due to facebook!
So sorry to hear you've gotten so much worse! Boo hoo :-( I'm glad you are going to rest because it sounds, from your symptoms, as if a viral infection has gotten activated and your body is working hard to fight it. Hope your doctor can guide you in strengthening the immune system and/or using antivirals. I hear they're getting impressive results in the Norway study.
I'm so sorry to hear this. I agree with Janis that it sounds like a virus got reactivated prior to the Georgetown study.
I echo others too in that now is a time to surrender into resting (as if you had a choice).
Hang in there!
I'm sorry to hear about this! I hope it is only temporary and you'll be back on your feet soon. What p1nkg0dess said is true—be careful what you put online. Insurance companies are not above twisting the truth to get you off their hands.
Here's that news story:
http://www.cbc.ca/canada/montreal/story/2009/11/19/quebec-facebook-sick-leave-benefits.html
I am so sorry this has happened to you. I hope that your time of rest and staying home will be just what you need. My husband just went through the same steps to get disability. Not easy, but it worked well for him and he is on disability now. Please know you are in my thoughts and prayers as you do what you need to heal.
Everyone ~
Thank you for all the well wishes, positive thoughts, prayers, and advice!
I know this is an older post, but I agree on the energy crash and difficulties on getting disability. As if having a serious case of CFIDS wasn't bad enough.
Blah.
I wish you well in your journey :).
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