Wondering, finding out, keep living.

[Spring2017]

Well with all the rain and cold weather there seems to be little relief. I felt great this summer after starting my meds and changing jobs, the heat and little rain.

However when winter started I made arrangements for my little family to have the flue jab. We have so far only had the youngest ill for 5 days with very high temp and flue like symptoms.

Fingers crossed that will be it.

I have tried to promote that everyone I know gets the flu jab. It is very strange how little others know and what attitude they hold to the flu vaccine.

It is scary to hear one of the parents at school pick up say “ I’m not believing in the Flu hysteria, I don’t believe that it helps at all... they can’t ever come up with a vaccine for the right flu, anyway my sons get the nasal flu spray in school but still get sick!”

What do you say to that?! I wanted to shake the women and scream at her “ to protect people with auto immune decease, people on medication for lifelong illnesses, people who are fighting Cancer!” One of my youngest friends just lost his dad in the spring to Cancer but kept come to the school until three weeks before his body gave up.

I wanted to tell all of them standing there nodding their heads that they are part of the problem and why people still die today of something that should not be an issue anymore! That because this very women came to school pick up with her youngest covered in Chicken pox and let him loss in the school play yard while waiting she was risking someone’s life to ease her own of getting someone else to pick up.

I’m amazed at how this person and her friends are so closed minded that it doesn’t matter as long as it does not have a negative impact on her or her family.

Anyone else get to a point where going out even to the super market to shop is a battle with yourself ? As you know there will be sick people there and you sort of have to think twice about this. I wonder if I’m becoming a hermit?🤔

I work from home, so the only times I leave home is when my DH is not here to drop off at school or pick up or the kids do their sports and if DH hasn’t picked up shopping.

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I work at a primary school for children with special needs, the amount of times parents pack their children off to school with some sort of contagious illness is unbelievable!

I myself am wary of the slightest bug/cold etc etc, if I have anything of the formentioned, I stay away from anyone, especially my dad as he's going through chemotherapy. It's really not worth risking.

[helixhelix]

I tend to think that it's that people don't think of it...

I remember pre-RA that I would feel impatient with (young) people who were slow to get their money out of their purse at the check-out, or move along a pavement. Now I feel horribly guilty that I never considered that they could have something like arthritis. I always thought it was an old person's problem.

So now I try to stay calm and explain the issue to people very gently. As for virus and bacteria, I don't worry about going out as I just make sure I wash my hands frequently, step out of the way if anyone's coughing and spluttering - and hand people tissues to wipe their kid's noses.

If you are on the high doses of chemotherapy drugs that's another matter, but the dose we take is very low.

[Matilda_1922]

I understand where you are coming from. Have a colleague who doesn’t have the flu jab.

I work in a hospital so quite vulnerable to picking up infection although consultant says only slightly higher risk.

[Ruth12345]

Im like helixhelix. I also use antibac after pushing trolly around supermarket and before I have a meal or coffee out. I have a little bottle in my handbag. However if I know someone who isnt well I do avoid them. People dont have a social consience, not only in this instance but in others ie tax fiddlers are fiddling/steeling from us tax is our money....ok im stopping there as i say no social consience. Im less vocal than i used to be the more mature i get.

[Gnarli]

I reckon HH has got it right. Generally speaking people don't realise, don't get the impact of their actions and neither did I for the most part. Pre-diagnosis I was very aware of infection control and the need for vaccination (unless contra-indicated) as I worked with small children. There was a similar situation not so long ago at our local library. I ranted. Lots. As usual, unless you're directly impacted, it makes little impression. Nowadays, I'm there with the anti-bac, obsessive hand-washing and trying (desperately) to teach a small granddaughter to use tissues and not her hand. Kinda puts you off holding her hand when it's covered in snails trails *shudder*. Hugs

J

[Kai-- in reply to Gnarli]

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An ‘Aside’ if interested, Gnarli? 🤔

Hygiene Theory (as related to autoimmunity/ microbiome 🔬 ): google.com/search?as_q=hygi...

Merely a thought for consideration to avoid having the pendulum swinging too far in other direction — hyper-cleanliness.

Richard Matthews ( thesymbiontfactorblog.com/?... ) sums it up as: " . . . hygiene theory. And that’s pretty central to the study of autoimmune diseases. When you look at the microbiome, hygiene theory is simply the theory that if we spend too much time and too much chemistry killing off bacteria, we rob our bodies of the opportunity of being exposed to those bacteria, and giving our immune system a lesson about what it is supposed to be doing.

This is proven somewhat by countries that do not have very good sanitary standards, that may go very far off the other end, but they tend to not have autoimmune disease. Autoimmune diseases are largely an artifact of modernized countries. And everyday, I see mothers that are disinfecting their children’s hands, disinfecting shopping carts, disinfecting food, disinfecting everything with antibacterial wipes and sprays.

And really what happens is you end up with an immune system that is like a military force with no training whatsoever. It may shoot the enemy, it may shoot friendlies. And that’s largely what autoimmune diseases are, they are an error of function in the immune system where a lot of our own tissues suffer injuries from friendly fire. . . . "

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Trying to find balance ⚖️ seems to be the trick 🤹‍♀️ . . . 🤔

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🙏 🍀 🌺 🌞

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[medway-lady in reply to Kai--]

I don't often agree with you Kai but do think the same we need germs, bacteria and virus's.

[Kai-- in reply to medway-lady]

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It seems to be like a ’training exercise’ 🤼‍♀️ for the immune system, medway-lady? 🤔

The trick seems to be how do we strike a balance ⚖️ in a compromised immune system amongst: germs 🔬 , meds 💉 💊 , etc., while allowing our ‘wonky’ 🤪 immune system to safely continue ‘training’ 🤼‍♂️ without become more unwell (setting off a cascade of inflammation 🔥, flare/ joint pain 💥💪, etc.)? 🤔 🤷‍♀️

Stumped. 🤷‍♂️ 🤦‍♀️

Guess that’s where our medics 👩‍⚕️👨‍⚕️ come in to orchestrate 🎼 🎶 🎷🎺🎸🎻🥁 🎹 that delicate balance ⚖️. . . . . 🤔

vimeo.com/195016426 🙏 🍀 🌺 🌞

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[Spring2017 in reply to Kai--]

I have one question to this though. What makes you think that auto immune illness like RA means your immune system has never had any work to do and now for the sake of it are attacking your healthy cells?

What I have found when looking into RA is that it is an over active immune system that has been under so much stress that it thinks that the cells in you lining in joints is “bad” cells and thus attack them. Not that the immune system has never had anything to battle and thus attack healthy cells in the body.

I was really under the impression that something big your body’s immune system has been battling would be the trigger for this ridiculous life long illness. Was I wrong?

[Kai-- in reply to Spring2017]

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Kindly see if Richard Matthews ( paddisonprogram.com/how-gut... ) addresses your queries, Spring2017. 🙏 😌

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[medway-lady]

I think its the herd philosphy in that if 3/4 get it done, the rest are protected. But I don't think that your right in someways; dirt and germs are good. We used to have Chicken Pox parties as children now older people get it because they did not have it as children and then its so much worse. I had mumps at 30 it was awful ! But we have to be realistic and not wrap ourselves in cotton wool. I don't even think I'm ill, I just have a condition which means I can lead an absolutely normal life as long as I take the LEF. Avoid germs by missing Michael Ball and Alfie Bow at the A2 - no way. lol xxx

[Spring2017 in reply to medway-lady]

Good for you! I was hoping for some perspective... as I said I tend to be at home so don’t get out that much and I think that might be part of my problem... I’m too much in my own space and in my own head.

I used to be more spontaneous and loved to travel. Last time I went away in October I got sick with in 2 days of getting there. The cough and fever lasted more than a week and had to travel home with it along with my family. ( who luckily didn’t get ill.)

So thank you for saying it like you see it.

Fingers crossed for getting out more...

[medway-lady in reply to Spring2017]

I'm sure looking out rather than looking inwards is helpful. Way I see it , RA is not terminal, and some great medications are available nowadays and I won't end up in the pain my mum was in. Its not all plain sailing but life isn't anyway, is it? I hope you do get out more and try not to worry as I have no doubt that worrying does'nt change things and the young always think they are invincable as I probably did. I do have my bucket list and having RA does not stop me booking holidays, or enjoying myself etc. Please do not worry as stress always makes things worse and its not good for the blood pressure. lol xx

[Ruth12345]

I dont think CLEAN is the answer and I do think exposure is certainly an answer. I always used to let the children be exposed but its not as simple as that anymore due to different times and maybe superbugs (they have always been)....social consience. We are not all the same and times have changed so awareness of diversity of needs and vulnerability maybe helpful