Phoenix Rising, a selectively supportive atmosphere

I got the flu shot yesterday.
I got it after reading a few posts here on PR, and made my decision.
I made my decision because I have a super super LOW WBC count, and if I possibly get the flu, I might not be able to fight it like someone with a normal immune system. I consider myself in a high risk category.

I also use transportation services that are shared rides...medical cabs and para-transit service. I am mostly home-bound...but there are times when I have to, and want to get out in the world. Thus, I can't guarantee who is or isn't going to sneeze in my face in the back of a medical cab.

It wasn't an easy decision for me. But, the headlines in NY State scared me enough to do this. I have maybe had 1 other flu shot in my whole life. I'm 45.

I am having some side effects. That aside..... I'm finding Phoenix Rising a less than supportive environment regarding my decision. And, I'm writing this blog entry - because I find people's non-supportive attitudes truly puzzling. Also, I feel like it's a pie in your face scenario. Fellow PR members may not agree with my decision.... but how about (and this goes for numerous people at this point)....instead of telling me (with quotes from health related articles) what an ignoramus I am....why don't the same people ask how I'm faring?

I went on chat last night because I felt I could use a little moral support. When I mentioned I got the flu shot - instead of people just saying "oh, and how are you doing then?"....I got cut and paste quotes from a retired doctor saying the flu shot is a big scam, and then the conversation turned into one about Sambucol. So, I decided that I wasn't going to garner any interest from my fellow sickies...and just signed off.


Nico, I'm sorry you didn't get positive responses for your decision. I understand concerns because some react negatively. I also have very low WBC and if I was exposed to a lot of people I would have gotten the flu shot with no hesitation. It's troubling to read that some think vaccines are dangerous when in fact they save more people than "kill them". I saw a virologist years ago who gave all his CFS patients flu shots and only a few had short term negative reaction. Glad you are doing ok,.
there is so much conflicting information out there that its really hard to know what to do. Flu shots are generally advised for people with compromised immune systems but then they say if a child is due for a vaccine and has cold/flu symptoms that they should wait till symptoms are gone before getting vaccine. Then there are those that say not to get it at all. I have never had any adverse reactions to vaccines but then some i have noticed didnt take ie didnt produce any antibodies, but then i havent had any vaccines for years now. I think generally people mean well its just that some have hard core beliefs that can come across very aggressive.

I hope u dont get the flu and are able to get through winter healthy as u can.

good luck,
I agree with you about the public transportation. Years ago, I got a respiratory infection prior to a planned vacation. I talked to a nurse who told me I could go ahead with my plans if I took appropriate precautions to avoid exposing others. Since I was being careful not to expose others, I became aware of how many other people around me were sick and were not.
Nico, I'm sorry that chat wasn't more supportive. You can always invite somebody you know, or a chat mod, into a private chat and ask them to come support you in the larger chat room. It sounds like you stumbled into a group with set opinions........I usually just leave when that happens to me.

I think getting a flu shot issue is a highly personal issue in a group like this. Some of us have reacted very badly to the shot. But for others, there's more fear of getting horribly sick and not being able to get to a doctor quickly. A local friend got this flu and very quickly needed antibiotics and an inhaler.

Anyway, sorry you didn't get the pleasant conversation you were hoping for. I don't know if you were in general or member's chat, but member's is usually a better place for anything that feels sensitive.
Thank you everyone for your comments (and support!). I am doing OK....last night I had very bad pain, which is pretty much resolved....and I had a high heart rate and didn't get to sleep til after 2 am. I think tonight I should be more stabilized. I will be talking to my primary care next time I see her. She has often told me that her fibro and ME/CFS patients get the pediatric version.
Hi Nico. I too am sorry you didn't get very supportive responses. I think any choice a person makes is the right choice for them. Our whole province is one great big red zone of flu right now. I got the flu a few weeks before Christmas. I was really ill and it left me weak with tons of symptoms coming back worse than usual. Then I got tonsillitis and after that strep throat. I still have a sore throat, am running intermittent fevers, I am weak, in a ton of pain etc, etc. I haven't gotten the flu shot for years and have been lucky not to get the flu. No luck this year. I have no problem with the flu shot and got it every year when I was still Nursing and I did not experience any untoward side-effects nor did I get the flu but that is when I was well.

I am sorry that you have experienced some side-effects from getting the shot. It's a double-edged sword -- for us we have to seriously think about possible side-effects weighed against what will occur if we actually get the flu. It's not easy. I hope your side-effects are short lived and I hope you don't get the flu either.

Let us know how you are doing tomorrow and if you want to have a chat, let us know.

Hi Kina...oh my got hit so hard. I am so sorry. :-( I am wishing you a solid & steady recovery....toward a better baseline even. (It's Wednesday night and I am not in pain - thank goodness.) I just hope you are doing better *soon*!!! Thank you for the offer to chat as well :)
Hi Nico, many of the ME experts say the flu shot is a good thing for most of us. Opinions vary hugely and the science is controversial. Flu shots save lives, period. Sure there are horror stories, and mistakes, and many old flu shots are probably either not very good or dangerous. However this does not mean they all are.

Ultimately its your choice. You assemble what facts you can, then you decide. I am disappointed that people do not accept that. Personally I would not take it, for me, but that is my choice and mine alone. However I live in almost total isolation, I am rarely exposed.

A lot of the more worrying science is not about the flu vaccine itself, but about adjuvants and preservatives. One of the worst preservatives is no longer used, and adjuvants might cause issues with some - the best advice is to take it when you are feeling better and do not have an active infection, and don't have multiple vaccines at the same time. These strategies will minimize risk and maximize gains.

The final issue to consider is how long it will last. So many of us lose immunity fast, there is something wrong with our memory B cells I think, and some evidence that they have a high turnover.

The final verdict is not in. The opinions are varied but most of our ME doctors think its a good idea so far as I can see. Regardless, its your choice, and between you and your doctor - not you, your doctor, and Phoenix Rising members.
thank you Alex for your thoughtful feedback, and insight to the particulars. appreciated :)
Hi Nico, sorry you had this experience with other members - especially upsetting to be treated like that in chat. I often only go on chat when needing an extra bit of supportive, so can feel so awful to be dismissed in that way. I hope you are feeling a little better - and good for you for bringing this up publicly.
Thanks Justy. I'm doing ok...but PEM from trying to do too many chores in past days, actually. Side effects from the shot really seem to have resolved now.
Hi Nico, i'm glad that the side effects have resolved now. Wether to have the jab or not is a big question for us all. I have chosen not to have it - but i do consdier it every year as i have fibrosis in one lung and have had pneumonia twice in the last few years. I have had flu this year already and thankfully it didnt go on my chest. But i never know if i have made the right decision or not.
PEM certianly gets me down - i never learn!
Hi Nico, We are all so different and the state of our immune systems are completely different that there is no universal answer( like everything associated with ME CFS) I was a kid with 65 allergies and severe asthma and I got colds before anybody and they too go into my lungs. I have not had a cold in eight years. My Th-2 immune system is completely dominant and my Th-1 immune system (kills viruses) is dormant. The flu shot made me sick in the past. I feel like I have the flu everyday as many of us can attest. I am glad you got your flu-shot and it seems you have an good understaning of your situation and your needs. We all have different DNA that deals with this illness in different ways. Stay Strong Nico!
Hi Xandoff, thanks for contributing to the thread! :) There is no argument that this is a decision that is unique and personal for any individual. I appreciate that some people will become sicker from the shot....and it has been a worry of mine for a long time. That is why I did not get the flu shot except for 1 time in my life perhaps. I was told by my homeopath a couple of years ago not to get it. However, when I saw the "state of emergency" I needed to reevaluate my past decisions. I am sorry you have overt flu symptoms every day...just horrible :( I am wishing you to stay strong too....

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