MY FEELINGS ARE VALID.

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stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 7/12/2007 11:21 AM (GMT -7)   
i WAS WONDERING IF PEOPLE IN YOUR LIFE INVALIDATE YOUR FEELINGS OF FATIGUE AND PAIN? mY FIANCEE IS COMPLETELY FRUSTRATED WITH ME AND SAYS THINGS LIKE, "YOU'LL JUST GO SLEEP". iN FACT, WE JUST GOT INTO A FIGHT BECAUSE "I DONT TAKE CARE OF THINGS I NEED TO". I AM NOT LAZY, I AM JUST EXHAUSTED ,ESPECIALLY AFTER WORK. i AM GOING A REALLY HARD TIME RIGHT NOW. i DONT KNOW iF i HAVE CFS YET, i AM HAVING A SLEEPING DONE IN 2 WEEKS, BUT i KNOW I AM CHRNICALY FATIGUED. i FEEL LIKE I ANM WALKING AROUND LIKE A ZOMBIE. i WAS WONDERING IF ANYONE GETS THIS KIND OF TREATMENT OR REACTION. i SWARE THIS IS NOT ALL IN MY HEAD. i JUST WANT TO FEEL BETTER.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/14/2007 8:16 AM (GMT -7)   
stutterbug, you are so right when you say that what you are experiencing is NOT in your head.  It's so hard for healthy people to understand the level and the magnitude of the fatigue we feel.  It is not the tired feeling that healthy people get, it is an overwhelming and debilitating fatigue.  There's a website that you might want to look at and there's something great there called The Sppon Theory which explains to healthy people what it is like to live everyday with a chronic illness.  The woman who wrote is has lupus, but it can be applied to any dbilitating illness.  The website is: http://butyoudontlooksick.com  I printed out copies of the Spoon Theory and gave them to my husband and other people who are close to me.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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pasara
Regular Member


Date Joined Apr 2006
Total Posts : 206
   Posted 7/15/2007 5:38 PM (GMT -7)   
i would make sure you have a LONG engagement if your husband-to-be has this attitude. He should take time to gain understanding of your illness and be supportive of you.
pasara
"Don't be afraid."


twinofdar
Veteran Member


Date Joined Mar 2006
Total Posts : 1837
   Posted 7/25/2007 6:19 PM (GMT -7)   
hippiemom: We like the spoon theory over at the Lyme Board - in fact I did a post just today on how I "ran out of spoons" I am going to print it out and share it, too - that's a great idea.
Too much of anything is no good - moderation is the key.


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/26/2007 6:41 AM (GMT -7)   
The great thing about the Spoon Theory is that it can be applied to so many of these chronic illnesses.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



alfers
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Date Joined May 2005
Total Posts : 2671
   Posted 7/26/2007 11:32 AM (GMT -7)   
Wow, I popped over here just to see what people were talking about with the Spoon Theory...Just read it and I actually got chills! That was a really amazing description.
Lyme Disease since fall 2001; on antibiotics since spring of 2005 (since diagnosis), treating lyme, babesiosis, ehrlichiosis
 
Moderator for Lyme Disease forum


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/26/2007 3:52 PM (GMT -7)   
Hey alfers, it's good to see you here and I'm glad you took a look at the Spoon Theory and am glad it's getting lots of use. I think it's one of the best things out there to explain to healthy people what it is like to live with a debilitating illness everyday.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



ruggedtoast
Regular Member


Date Joined Apr 2006
Total Posts : 44
   Posted 7/27/2007 1:47 PM (GMT -7)   
Totally feel for you. Its next to impossible to explain to someone else what its like to have your energy metered down to such a finite degree and have things they take for granted cause you significant physical discomfort. Add the constant brain fog which robs you of reason and leaves you just feeling constantly like you 'dont want' and things are getting grim.

When you feel so sick and tired its also quite hard to explain rationally in a quiet moment. Most people with cfs feel rubbish all the time which puts you in a bad mood constantly, arguments arise very easily because you feel so embattled and if you feel like your partner is adding to the misery its very easy just to snap and lash out at another thing your fighting. In a sense cfs puts you in constant 'battle mode' because you feel like youre being attacked by something.

That Spoon book sounds good, maybe you could ask your fiancee to read this thread as well.

It would really help your relationship if you try and involve her in your disease and make her a stakeholder in your recovery as well. You shouldnt forget that she probably feels very frustrated because she doesnt understand why youre acting as you are and doesnt feel like she can do anything. She may well think youre losing interest in her, you need to stress that isnt the case.

There is quite a bit she can help you with. Many people with cfs find that going on a diet to help post viral fatigue really helps. I had a good book by a Leon Chaitow called Post Viral Fatigue Syndrome, I dont know if its still in print but he seems to have this website with some other books that are probably good too:

http://www.leonchaitow.com/candida.htm

you totally cut out caffeine and sugar to give your poor old adrenal glands and pancreas a break and also have to eat fresh food that wont aggravate candida or immune reactions and will complement eachother to boost your system.

All this takes a fair bit of preparation and if you feel very poorly all the time its tough to buy and prepare it all. When you start out it will probably make you feel worse before you feel better. If she can help you with that and feel like shes making a difference to this thing then the context of her relationship with you and your illness will really change.

Once I got off the diet personally I also found a product called Threelac to combat candida worked quite well as well and my doctor has me on an antidepressant called paroxetine which helps a great deal too.

Best of luck

john jones
New Member


Date Joined Aug 2007
Total Posts : 4
   Posted 9/2/2007 12:24 PM (GMT -7)   
I agree with parasa
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