Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 19, 2010.
You can view the page at http://www.forums.aboutmecfs.org/content.php?191-Magic-wand-anyone
On the advice of my doctor, I started taking active birth control pills every day of the month in the last year, so that I don't have to have a period more than a few times in the year. It has been great, and I wish I had started doing it years ago.
i take mine all the time with no breaks, i recommend it. no more starting to feel ok then the period hits & knocks you right back down again. it's the way to go if you ask me. my docs assure me there is no medical reason a woman has to have a period.
Periods are a bugger, but the contraceptive pill can cause trouble too. I think that if you find a pill that suits you it will all work out, but that can be a bit hit and miss as it seems really difficult to predict which pill will suit which woman.
This is something I should look into more seriously.
i've never had any trouble on any BC pill. i really do highly recommend this to women with our condition. i have a friend who has IC (interstitial cystisis? not sure how to spell it) anyway she has the same problem. & if she could take the pill she would, but she has a tumor on the liver so they recommend she not. i see her go thru horrible periods & remember how bad mine used to be too. it's a no brainer for me.
Yes, but since most with CFS can't take meds and are sensitive...it may not be great for all. Me included. I have a horrible time on the pill...get much sicker due to being allergic to my own hormones and I had a blood clot. So, I am not allowed and couldn't even if I was. Thank you though.
One CFS specialist (is it Sarah MyHill?) has written an article about CFS and the contraceptive pill and she recommends that those with CFS dont take it. (I cant remember why now, I'll try to find the article).
(I myself reacted very terrible to a contraceptive pill and ended up in hospital for a week due to it).
Great to hear you still have your creativity! I feel your pain so much I can;t express it. The things you mentioned, are what I struggle iwth everyday. Having great ideas, and not being able to pursue them.
I patented a product, 15 years ago at the age of 22, that I have protoypes of and is sitting waiting to be manufactured(i had CFS then that stopped me), all I have to do is identify some good sources for making the product(it is plastic injection molded). I know a really great CEO of a worldwide organization that already has 95% market penetration for my type of product in the US(not to mention aroudn the world). All I have to do,is bring him the final product and he already agreed to buy 50,000 units out of the gate as a trial run. Does it kind of sound like what you are going thru? It is sitting right their, but don't have the consistant mood or energy to pursue it? Everything can be imagined with 100% cofidence, just no energy to push it through? So yep, I know exactly how you feel! IT HURTS $%^&IN BAD...
Anyways, I never give up hope and constantly try to scale back my expectations and goals. To the point where I hope I will get better or can find a level of stuff I can do. Problem is, I am limited to just a few hours some days of doing much of anything...
Sounds like you are doing good if you are able to make and sell your jewelery, and have the creativity to do it. Thta should be worth something, and it sounds like you are better off than me who has just put all that on hold for now.
I actually would live to learn how and make jewelery or pottery for that matter! So I admire that, and you have reminded me that when I take care of some other things, I might try that!
However, here comes the blunt realist side of me, To get rich and acheive ones dreams, it is necessary to work with and manage other people in my opinion. Part of the equation of getting rich and running a business is the mark-up one makes by putting people together and the mark-up on their services. The other part is the idea, but ideas are just ideas and the real money is made by marketing and all the no so fun stuff. But that can be hired out, but is not easy and requires energy and persistance. You know all this I'm sure.
So don't be so hard on yourself!!! and maybe build on what you CAN do instead of what you can't? So you CAN design and make jewelery. You CAN hire part time help once in awhile. DOes that make sense? Is there anyway you can re-focus your CURRENT energy to make your dreams real in your existing energy level envelope without being too hard on yourself and causing a crash? That seems like the crux of it!(ovesimplified of course) with our neroimmune disease, one needs to work within a given energy envelope, and iven skill set envelope to make things happen. Otherwise it may just become a burden to worry and deal with those other people and the stresses of trying to do too much.
I have determined that I do have those abilites to create, invent, deisgn, see a business all laid out, manage the people and so on. But I have come to grips with the fact that I don't have the energy. Don't have the consistent energy or mood to drive things day in and day out. It actually drains my energy to try and pursue the stuff. So I essentially have given in to my disease and have accept it. Trying to accept myself for who I am, and not who I think I want to be. It took me a long time to do that! (hard to do being a visionary and creative type)
Sounds sad right? well I have gotten myself in finanacial trouble by thinking I would get better, or I was better then I am.
So it cuts both ways...One needs to go for it but needs to understand what ones energy envelope is and be realistic. Youu know all this.
Sorry for the rant, but I have a good idea of how you are feeling and it just illuminates my problems too. Hence the long winded response!
Thanks for blogging, I enjoy your blogs more than anything on this site.
I thought BC pills interefered with folate absorption.. and if you follow rich van k or amy yasko's work.. you'll know they think folate deficiency is a big part of the problem in CFS.
I'm not sure how big the effect is....but I wouldn't touch BC pills. In fact, I thought at least that's one thing I did right with ths stupid illness.. I never took BC pills .. which would supposedly compound the problem.
OTOH, if I understand Rich's work correctly, maybe preventing periods ameliorates the oxidative stress that typically gets worse that time of month....
Hmm. Not sure about the trade off here..Maybe Rich could comment.
thank you for your comment. WOW! I am thankful you like my blogs. I think it's awesome you got something patented. That can be a hard thing to do. And, it's also sad that you can't finish it RIGHT NOW.
You hit it all on the head. I am exhausted right now. One because of work but more importantly, I have been following yasko's protocol and I am having a wicked detox...I have to stop for a few days. My whole body is in so much pain from the folate and B12....HOLY MOLY...the F word would be more appropriate and less refined. OK.
Yeah, it's a toss. I am excited because I was accepted into a juried art show and it's only 4 hours. It's in September and it's a big deal. I have hired someone for the weekend. That is how I am going to do it. I am going to hire someone for events.
I am actually really going to sit down and hire someone and interview them to make sure they are the right fit. I need someone who can do what I can do...not just sit there, but one who knows how to place jewelry and what looks good. They need to be creative as well. Hence, they need to be "me" while I am not there. I am a type A perfectionist and I need to loosen the reigns because it fuels this disease, as we all know.
I took off for the summer doing events. YEAH, but my head chirps on how to make it grow and I end up working anyway because even though I am sick, I am bored. I need something to do besides complain about pain or fatigue.
Right now, my big dilemma, I just bought a new phone. A blackberry for my business. It's an amazing thing, but I don't know how to use it. It's like a mini computer in my hand. That is exactly what it is. It gongs when I get an instant message. All of this technology. I need it because I have a website and receive email. WTF have I gotten myself into here?
I am at least laughing!
That's hilarious with the blackberry! You are getting gonged and all. I love it. On top of that doing detox to boot. Just jump right in there spitfire! You are ambitious! You can do it, don;t forget to rest though ;P
SOunds like you have really tackled this stuff head on and all with the website, the phone, and th employee. SOunds great. I always like to jump in way over my head and just figure stuff out. However, reading the manuals and how to books is good too. I would like to see your website, and jewelery? if you could PM me? SOunds really neat. or post it here for advertising, whatever...
WHile detoxing, can I reccommend taking it slow and avoiding stress and other things that bring on your symptoms? I say that becuase I had an inccident while detoxing lead that screwed me up. I don;t know if I can recover from it. I think the XMRV burnt some wiring up while I was stressed and detoxing. Be careful please.
Good to hear all the progress though. I'm all excited and motivated now and want to create something1
A patent is not really that big of deal really though. It is easy to patent something. It is the infringement part that is trickier, which determines how useful ones patent is....But if you can sell stuff without even getting a patent, that is even better yet.
I think you can find a very competant and productive emplyee in this job market. They won;t be you, but with good communication, it can be a great thing.
One last random thought. Part of the power to doing ones own business, is you don;t have to convince a boss or anyone else what you are capable of. you can just do it. So it doens't matter if you call in sick, or just screw something up. It is all yours to screw up spitfire! So take your time and do it your way! I'm jealous, but still rooting for ya.
My website is www.spitfire-designs.com and if any of you are on facebook, I have a business page too. Spitfire Designs Jewelry. I love that because you can see my latest designs right after I make them. It's sort of like a blog too.
I am thinking of putting an ad on craigslist to hire someone and to go to a college to have an intern. I can teach the intern a lot. It will be one on one and I am in a college town. They will be able to help me but I can help them too, with placement, color schemes, art and business.
I will call colleges soon to find out how to go about this. A fashion college or art school would be perfect.
Very nice work! :Retro smile:
Had a look at your web site. Look awesome. Your are very good at jewelry and the website is great too.
I found your post interesting because of the business aspect with CFS.
I pretty much violently agree with everything you and markmc said.
I myself was an IT guy working overseas when CFS hit.
Now with CFS I have enough enery left for 1 or 2 hours work every day.
So I tried to go self-employed fixing PCs and to make it perfect and optimise every aspect of my work so
it would be easier over time and with experience.
Like you, I think I am very good at what I am doing. I am a bit of a computer whisperer. If the internet is down,
email doesn't come through or PC won't boot then I know where to look and even though there are not
always easy fixes I know the odds of what it could be and what's the best approach.
But how do I market this?????
I am not competitive! I get buggered just driving 20 mins to the customer. Some people have noisy dogs,
kids, phones etc in their homes. Or I get bombarded with a lot of questions, problems, multiple computers
until I am completely washed out for a few days.
I do get some CFS friendly jobs in quiet environments but it varies.
The money would clearly be with offices/businesses but they tend to be more energy zapping because
everything is more urgent and the problems are bigger.
So I do "small-town-domestic-computer-support-showing-the-elderly-how-to-do-a-double-click-on-the-desktop"
type of thing. That sucks!!!
To open my own computer repair shop and hire employees that do the work for me I clearly don't have
the energy. I needs building up, supervision, capital and mental energy that I don't have. On bad days I don't
even want to return phone calls.
I refuse to call you lazy. I used to have to get my computer fixed and I had to drive it to the man's house who fixed it. Can you advertise it that way? I guess I was never the customer that asked a lot of questions, I just wanted it fixed. You can say how many computers you fix a week by just saying, "I am sorry, I have too many computers to fix right now. Call me in a week if you can wait." Some will and some won't. Some have computers at work so can wait.
I think if you have them come to you, you can control the situation. I completely understand your agitation. I don't like when customers come over to buy jewelry or try different pieces on and bring their children. I told one customer when she wanted to come again that no children were allowed. I have never heard from her since, but why should I have a creepy child in my home picking up things and wanting to set stuff on fire? No thanks.
I would not take on offices or businesses unless it was one computer.
Ya know one thing that you could make money off of? Putting photoshop or Excel on someone's computer. You probably have it and it costs so much. I was lucky to have my boyfriend who had all the "stuff" I needed for a computer but it's $600 for PS. I need it for my business. Many people do. Charge like $150 to install it. Tell them how much it cost's if they buy it.
Just a thought. I feel for you but I have hope that you can do it!
Professional website spitfire....
LIzard. That elder population sounds like it could be a good little niche. Maybe not challenging, but maybe nice gravy type work. The idea of having them come by sounds good especially with limited energy.
I have had a couple seniors find me in the past. They end up loving me and wanting to just spread the word around. Can be a great thing for one with patience. They almost will pay you just for companionship, some are so lonely. Not that I would advocate that. But they can be easy and low pressure to deal with.
SO ya... senior mouse clicking, emailing, and web surfin classes here we come!! 1 hour classes at the lcoal senior center, $5-10 per class per person?
ahhh.....then the computer software loading service....then.....you might have something there.
Hi Mark, Hi Spitfire,
Thanks for the thoughts and yes, "LazyLizard" is probably not a good name in a CFS form.
I do give people the option to bring their PCs to me. Some do, thats fine.
Also, I keep up a nice facade of how busy I am and I "squeeeeeeze" in clients
at 2.30pm when in reality I have nothing else to do all day.
The thought about installing software sounds slightly risky as you
seem to suggest to charge for copied SW. Sooner or later someone is
going to dob me in.
Mark: I instinctively prioritize older, easy-going folks. It can be like
picking up money from the street when you sort out an older
lady's issues with Outlook. They are so happy and grateful. It surely
is the safest money because shifting desktop icons and
tutoring the use of attachments in emails carries no risk
of system failure or warranty claims.
You can probably tell, that I am having good and bad jobs.
Sometimes I love it but feel awful after other jobs. I never chose
to work self-employed as a suburban PC tech but under the
circumstances it's the best job.
What you say about lonely seniours is very true. Some jobs
clearly have a strong companionship factor where my visit
seems to be the highlight of the day.
Let me be honest: This job is like therapy for me too.
A hobby that gets money in and gets me out of the house
and among people. I am so privileged!
Yes, my mom is 80 and has no idea how to use a computer and won't. Going to a retirement community and posing this as a tutorial is a great idea and a quick $100 for an hour. Or more. My mom's place, they have a computer room on the premises.
Sorry about the PS idea. Didn't realize it was illegal. EEK. Well, my last computer guy did that. And, I am sure made a lot. He would kind of just slip it in that he could do that if I wanted.
Thank you MarcMC. Thank you!
Just a bit of brainstorming between cfs'ers! :sofa: Heya, you may want to check your mailbox, I think you have exceeded the storage limit spitfire. Maybe we should go and find the manic support forum and make some connections to get all this good stuff done! :tongue:
But your doing it, congrats!
Your putting one foot foward in front of the other is inspiring in many ways.
I just want to ad, that I know many folks can;t even get out of their beds on here. So starting a new business venture may be out of the question and may create a bunch of extra unwanted stress. However, maybe their goal is to shower and sit in the sun one day. For another it may to start a blog site, and for another it may be selling a few things on EBAY. FOr me, it is the dreaming of what I will do when I get better that keeps me going and hoping that I can get to the point to work again part time, full time, and how to best spend my energy or get satisfaction out of life.
That's it, I'm ready to get better now.
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