This week I am finally allowing …
This week I am finally allowing myself to know how exhausted I am. I feel that it is less a physical tiredness, …
Join Now
xRobinx 
9:42pm November 18
Wow, I got in the shower for the first time in almost three months yesterday. If that's not a victory I don't know what is! I didn't wash my hair so it was just a half shower, just scrubbed probably ten layers of dead cells off my skin. There's no way I could have done that in August.
I am absolutely committed to not overdoing. Every day is cautious, routine yet flexible. If I need a little more rest I take it. If I think I can do an activity I proceed but reduce it or cut it in half, like my shower.
The hard part is not being upset about all of the things I can't do. I have a large, 80 pound shepherd mix. I used to take him for monthly baths in a cozy, friendly, do-it-yourself grooming salon. A mundane chore for most people but I enjoyed it: the pretty drive, seeing all kinds of dogs getting baths, and best of all a clean dog. You are permitted to take a bandanna after every bath and the owners select adorable plaids, prints, and holiday styles too. I save them in a pile in my pet drawer and make sure my dog is always wearing one. He's a goofy friendly dog but people seem to be afraid of him and the bandannas make him more personable. He loves having them put on him, too.
But, right now I can't even walk my dog, much less groom him. I called around today and most groomers charge $60 to bathe a dog that large. I have to arrange for someone to drop him off and pick him up. I wonder if and when I will up for grooming again. Chores elude me, like grocery shopping and laundry. I must ask for help. I pay my niece and nephew to vacuum and mop my floors. Cooking is a far away dream. After fourteen years of steady progress I am once again unable to take care of myself.
But, I can walk across a room without fearing I will collapse. I can empty the dishwasher, and with a little rest afterward, feel fine. My aunt came over last week and I sat with her in the living room for fifteen minutes. These are little seeds of hope.
The news about XMRV is welcome but a little unsettling. I have witnessed the politics of CFS research unfold over the years I have been sick. The Reeves and the Wesselys have their careers invested on the notion that CFS is emotional. CBT studies always show a subset of patients who don't improve. The sickest patients are excluded. In the meantime desperate people spend a small fortune on supplements. Careers and marriages are lost, hopes dwindle and expectations diminish. Years pass. The government pays out millions in disability and spends a fraction on research. I have seen so many "causes" of CFS discovered: orthostatic intolerance, dysfunctional sleep, other viruses, neuroendocrine dysfunction. I have so many questions about XMRV and must wait for the answers. But, I never stop feeling hope.
UPDATED GOALS
Recover to where I was
Progress 10%
Encouragements: 1
Add your supportComments
You might also like ...
Once I understood that I am responsible …
Once I understood that I am responsible for my health, new ways of caring for myself have come to me. I realize that it …
This is a farewell. I have decided …
This is a farewell. I have decided to admit that I am not posting here, I like you all so much and may return to …
Congrats on your shower! Sounds kind of funny, doesn't it? I always try to remember to give thanks when I'm in the shower - for clean water, soap, a clean towel, etc. Sounds kind of strange I suppose, but that's how I roll.
I've had a tough month of sleep crazies which always reduces me to gratitude in the smallest of degrees.
There are dog lovers in the world. It's interesting to think about really. I'm sure there is someone who would be happy to wash your dag, but how to find that person is the question. You know what I mean? Kids at our church are always looking for service projects and that would be perfect for a dog lovin' kid. We use to have a neighbor girl who wanted to be a vet and she would have loved to do something like that. I wonder if the humane society would have a list of volunteers that offer the kind of services you are looking for.
I am grateful for your voice of hope. I appreciate your efforts to get through your trial in the best way you can.
take care,
katy
kjfe
Hi Robin. I saw this entry as i was giving you a HUG and thought wow this sounds like me!
It is remarkable what "normal" tasks we take for granted. Like showering, or don;t even get me started on shaving my legs! ( It is a good thing I am single and my dog does not care if i shave my legs!) So many drs visits I had to "apologize" for not shaving my legs when they checked my ankles for swelling. At least now winter is coming and i do not need to worry as much about it! AH life is good! LOL
as for the dog....I will cry if I write too much BUT I understand..my dog, GOD BLESS HER, has had to put up with me being ill and I feel so much guilt it kills me. Luckily, she is an English Bulldog that loves to nap and we nap quite a bit! And now that I am doing better than I was during this last setback, we play more and she is happy about that. However, I am not able to walk her so she goes in the back yard and I feel very guilty about that.
Asking for help is hard for me...and I have had to catch up on my household stuff as I can.
when I saw my new local endo I gave him basically my calendar where I write everything down ( steroid doses that day how I felt etc). He was reading it and he goes "cleaned fridge"? I wrote that because i told him I had an exc day that day and my fridge was way overdo to be cleaned! he laughed!
so showering, doing my dishes without having to take a break ( grr), being able to dry my hair all at once, being able to put on makeup without having to rest...heck, being able to get up off my sofa and walk into my kitchen without holding on to something, it is all improvements!
Really changes your perspective on life doesn't it?
Be well!
Jeeplibby2