Well, I Still Don't Understand!
At least once in your life, you have probably experienced having to stay home from work or school, because you were too sick to go; incidentally, I have yet to meet someone who has a cold or the flu tell me they are having the time of their lives and enjoying every minute of it! Or, you may have been hurt in an accident and were forced to give up activities you loved for weeks or even months; so, you know how stressful, depressing and frustrating being unable to do what you want to do can be!
Now, when I refer to being sick, I am not talking about feeling just a little "under the weather" or just not "up to" going to work that day. I am talking about being so sick you can barely sit up or talk, having a fever that makes every muscle ache and your bones feel like they are being crushed. Then, when you try to get up to go to the bathroom, your head pounds, your body feels like it weighs a ton and you become dizzy and nauseous.
Just imagine feeling that way every single day, week after week and year after year. True, some chronic illness sufferers have a few "good days" in between, but many do not have any at all! So, if you see them out and smiling, does that mean they are having a "good day?" Not necessarily! Many times they cannot wait for a "good day" to get out, because they do not have them; thus, they make the sacrifice, sitting there in horrible agony and knowing they will pay dearly for it later!
No human being can be at peace with being sick day in and day out! In fact, most people become very frustrated and impatient after just a few hours; then, if it lasts a few days, they become panicked and angry about missing work, school or other activities; next, they become depressed and act like a week out of their busy lives is the end of the world! Yet, they often treat their loved ones like losing months and years out of their lives is no big deal! So, why would you expect your loved one to be happy with losing years of their lives, when you cannot stand to even lose a few days?
It is true, you will never fully comprehend what it is like to be chronically ill, with all of the loss and pain it poses. You will never know what it is like to feel horrible every day and you will never have a grasp at what it is like to watch your lifetime dreams come crashing down forever. So, stop using the excuse that you do not have understanding and start focusing on whether or not you have compassion!
In all, your loved one just wants you see their courage in enduring a life of feeling sick, achy and exhausted all of the time; and, you have the capacity to know you would not want to feel this way every day yourself! You know how horrible it is to be sick and forced to put your life on hold for a while, so why don’t you tell them how amazed you are at their strength and perseverance!
It Seems like I Am Always Saying The Wrong Thing!
What can sometimes be even harder to bear than the illness itself, is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of oneself die off bit by bit, isolation consumes them when others refuse to affirm their pain. By repeatedly trying to "cheer them up" and make them see the "bright side" you are not validating their pain, but instead saying, "I don’t want to hear the truth" or "your losses don’t matter." On the other hand, if you acknowledge their losses, they will no longer be compelled to gain your belief by having to explain their situation over and over again.
Resist the temptation to make a visual diagnosis by saying, "gee, you look like you’re feeling good today" or "hey, you must be doing well." They may look like they are feeling well, because there is joy in their face from seeing you; however, your comment will only make them realize they are alone in their battle, since you are evidently unaware of their insurmountable hurdles.
In other words, by rebutting their answers with, "But you LOOK good," your friend really hears, "But, I don’t believe you, because you look fine to me." Instead try, "I am so glad to see you," "wow, I can’t imagine what you go through, you are amazing!" "you look nice today," or "how can I pray for you?"
Encourage your loved one by affirming your trust in them, loving them and showing them that they are still just as valuable to you even if they can no longer do the things they used to do; your willingness to acknowledge their losses will give them the strength and positive attitude they need to fight the illness, instead of wasting their energy fighting with you to believe. They are not seeking your pity or sympathy, they simply want your compassion; some will need your help, just listen, they will tell you how.
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.
Author Unknown
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Louise CFSi [5]i [5], CPN+/Bb+,Wheldon CAPi [6] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [7]i [7] & Endotoxinsi [8]i [8] PRN, Doxyi [9]i [9] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support
Links:
[1] http://cpnhelp.org/glossary/term/164
[2] http://cpnhelp.org/taxonomy/term/24
[3] http://cpnhelp.org/taxonomy/term/19
[4] http://cpnhelp.org/taxonomy/term/62
[5] http://cpnhelp.org/glossary/term/163
[6] http://cpnhelp.org/glossary/term/168
[7] http://cpnhelp.org/glossary/term/175
[8] http://cpnhelp.org/taxonomy/term/26
[9] http://cpnhelp.org/taxonomy/term/39
[10] http://cpnhelp.org/glossary/term/167
[11] http://cpnhelp.org/print/3183#comment-21210
[12] http://cpnhelp.org/taxonomy/term/57
[13] http://cpnhelp.org/taxonomy/term/38
[14] http://cpnhelp.org/taxonomy/term/6
[15] http://cpnhelp.org/glossary/term/171
[16] http://cpnhelp.org/glossary/term/120
[17] http://cpnhelp.org/taxonomy/term/128
[18] http://cpnhelp.org/chlamydia_pneumoniae/supp
[19] http://cpnhelp.org/taxonomy/term/44
[20] http://cpnhelp.org/taxonomy/term/41
[21] http://cpnhelp.org/chlamydia_pneumoniae/anti
[22] http://www.restministries.org/comfortzone/item27.htm
Louise, USA, Northern New
Louise, USA, Northern New England. CPni [10], Bb(Borrelia B., Lyme,) CFS. Started CAPi [6] 6/24/07
Doxy400, NAC1200.Currently 9/24/07, Doxy 200 mg, NAC 2400 mg.___________________________________________________________
Louise CFSi [5], CPN+/Bb+,Wheldon CAPi [6] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [7] & Endotoxinsi [8] PRN, Doxyi [9] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support
Louise, Thank you for [11]
Louise,
Thank you for posting this very point-on article! I sent it as a "last ditch" effort to my sister who is unwilling to get involved on any level in my struggle with CFSi [5]. I have no great hopes there, but felt I needed to make one last attempt at reaching out.
Thanks again -- too bad the author is anonymous, would love to know who exactly wrote it.
denise
63 year old woman feels like 80! CFS since 1998. Severe fatigue. Tested positive for CPN 3/07. Severe reaction to azithro (begun slowly in 5/07) - stopped. Working with nutrition, vitaminsi [12] before starting more abxi [13].
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63 year old woman feels like 80! CFSi [5] since 1998. Severe fatigue and awful reverse sleep main symptoms. No Fibro. Tested positive for CPN 3/07. Severe reaction to azithro (begun slowly in 5/07) - stopped.
It was posted to a
It was posted to a Lyme Support Group archive and was not properly identified by whomever entered it. Personally, I find more support and hope here at CPNhelp.org. I see my new provider next Tuesday. I am sorting out what few papers to include with my history and copies of labs. He is reputed to be lyme literate. That may not be Wheldon Protocol literate. I have been waiting 10 weeks for an appointment and have developed quite an opinion as to how I want to proceed.
Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFS. Started CAPi [6] 6/24/07
Doxy400, NAC1200.Currently 9/24/07, Doxy 200 mg, NAC 2400 mg.___________________________________________________________
Louise CFSi [5], CPN+/Bb+,Wheldon CAPi [6] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [7] & Endotoxinsi [8] PRN, Doxyi [9] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support
"Wheldon Protocol
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You gooo Louise, we've got
You gooo Louise, we've got your back!
Grace & Peace
CFIDSi [1]/ME 25yrs, FMSi [2], IBSi [3], EBVi [16], Cpni [10], (insomnia - melatonini [17], GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi [18] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 9-30-07 2nd pulse 1 X 250 mg Metroi [19]
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CFIDSi [1]/ME 32 yrs, FMSi [2],
IBSi [3], EBVi [16], CMV, Cpni [10], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08It may come from here:
It may come from here: http://www.restministries.org/comfortzone/item27.htm
CAPi [6] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [20] (2 x week). Waiting to first Flagyli [19] pulse.
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CAPi [6] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [20] (3 x week). Fifteenth pulse metronidazolei [19] + INHi [21] completed 11/22/2008.
http://www.restministries.org
http://www.restministries.org/comfortzone/item27.htm [22]
hdwhit, if you hit the space bar after the website address it will automatically become a llink. Isn't that slick?
Louise, USA, Northern New England. CPni [10], Bb(Borrelia B., Lyme,) CFS. Started CAPi [6] 6/24/07
Doxy400, NAC1200.Currently 9/24/07, Doxy 200 mg, NAC 2400 mg.___________________________________________________________
Louise CFSi [5], CPN+/Bb+,Wheldon CAPi [6] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [7] & Endotoxinsi [8] PRN, Doxyi [9] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support
Yes it is. Thank you for
Yes it is. Thank you for pointing that out. I am so used to my e-mail editor automatically turning addresses into hyperlinks that I didn't even notice it wasn't a link.
CAPi [6] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [20] (2 x week). Waiting to first Flagyli [19] pulse.
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CAPi [6] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [20] (3 x week). Fifteenth pulse metronidazolei [19] + INHi [21] completed 11/22/2008.
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