Tag Archives: invisible illness

Life with Foggy Frog and the Pain Gang: Father Eddie Tatro’s Story

10 Apr 14
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Father Eddie Tatro, from Bishop Eddie Tatro’s Study, has been a wonderful friend and fellow blogger. He has been reading all the true stories I have shared through the Life with Foggy Frog and the Pain Gang series and has offered to share his story as the first male story in the series. Below is Eddie’s story in his own words.

Eddie’s Story

I had no real physical pain issues in my life until way after university and seminary.  However, everyone feels pain on some level, whether it be emotional or physical, however those that are “normal” the pain passes.  Those of us who live with Chronic Pain Syndrome and Fibromyalgia deal with it at very high levels and on a daily basis.

Pain does change a person, and today my dear Readers I’m going to tell you how it has changed me.

First the back story on how I came to have chronic pain/fibromyalgia.  It was in February of 2011, I was in for a heart procedure at what was supposed to be a world class hospital.  Well instead of checking if I had any type of blood clot prior to surgery they went ahead and did the procedure and I stroked out on the table due to a small blood clot.  It was a very minor stroke but a stroke none the less.

From that stroke I had very mild paralysis on my left side of my body, which I did eventually overcome through physical therapy.  However I developed so much pain from it and still have it; the neurologist who followed me in the hospital came to the conclusion that the stroke did something to the pain receptors and nerves in my brain; and that I would be like this for the rest of my life.

That is the back story…
Pain has tremendously changed me, and in some ways for the better.  Yes I’ve always been a “sensitive” man, but I always chalk that up to my incredibly large heart, but I began to feel things much deeper.

I’ve become more of a loving person, and much more affectionate.  Yes my body hurts, but since this life changing experience I have wanted to cuddle more, and just be more lovey-dovey even if I do hurt.  The bad part of this (can there be one) is I can’t fully explain why and it sometimes pushes people away.  Emotional Padre is what one close friend called me after this happened, what can I say;  I think it is because I looked death in the eye and was granted new life.

Being in pain does limit what I want to do.  Intimacy when it did happen (not for my lack of trying but that’s a story for another day) was always wonderful but I would hurt so much afterwards, and still want to cuddle/snuggle.  I can’t hold my fountain pen for long and that kills me because I still like to sit down and actually write out a letter in long hand.  Doing simple chores can cause me the greatest pain as well, folding my clean laundry will put me in severe pain for hours.

There are days when I don’t even want to get out of bed and tend to my duties at church, which is more than just the occasional thing.  Still though I manage to fight the demon of pain (some days I lose though) and tend to my precious charges.

Even some days I am a grouch because of the pain, yes sweet, kind loving me can be a grouch; and that’s when I need some to gently hold me the most.  Dear Readers pain does all sorts of things to people and each one is affected by it differently, be patient with those that are in pain and so some love instead of vile vinegar to them; it will go a long way.

That’s how pain changed me in a nutshell, if you have any questions please feel free to ask me.

bishoptatro_1388171455_65About Eddie

In his own words, Eddie is a man of God who loves all his family and friends, proud of his Italian American heritage. He blogs about a wide variety of topics and is always great at listening when you need someone to talk to. If you haven’t already checked out his blog, please head over now!


Life with Foggy Frog and the Pain Gang: Jenn’s Story

20 Mar 14
Megan
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Sorry I’ve been offline for the last week. I’m currently struggling with energy, pain and tummy issues so have had to take a break from everything else to try and recover.

Foggy Frog and the Pain Gang Update

Foggy Frog FB Icon

I’d like to start this post off by thanking everyone who has already pledged their support for the Foggy Frog and the Pain Gang Kickstarter Campaign. We’ve reached 50% of our goal and we have just 8 days left to reach our target or we get nothing.

Please get behind us now and help us reach our target! I know that if everyone helps out by spreading the word, and pledging their support (even $1 is great!), we can reach our goal and get this book out to the world.  So please use this next week to spread the word and join our campaign!

Now on to today’s story. About a week ago I was contacted by Jenn from Tangled Up in Passion, she was inspired by the true stories we’ve been sharing about life with Foggy Frog and the Pain Gang and wanted to share hers. So, given how much I’m struggling today… here’s Jenn telling her story (Thanks Jenn!)

Jenn’s Story

I guess I can say that I had a pretty average life before getting fibromyalgia and chronic fatigue syndrome (CFS). I was working full-time as a teacher’s assistant, just graduated from college with a Bachelor’s degree in psychology, and I was pretty optimistic about the future. However, I wasn’t really sure where I was going career-wise. I worked in childcare since being a junior in high school, so I wanted to do something different.

Boy, was I going to do a 360 a year after graduating from college or what!

The summer of 2012 was “The Summer from Hell”: the unemployment checks came late, money was very tight, I worked part-time as a sub for a horrendous childcare center (my full-time job was a seasonal one), I quit and was paranoid that I would lose my unemployment for quitting this job, and when I was going to return to work for the fall, we were going to have an extreme staff shortage (ten times the stress!)…

For sure, you know where the story is going.

By the time the fall came around and I was back at my seasonal job, I noticed that I wasn’t myself at all. I thought I was just dealing with the typical “work stress” and “job burnout” because I hated my job with a passion. I was dealing with more fatigue than usual, I was in pain every day (which began in my neck and back), and I had frequent panic attacks…

Yep, that was around the time when Foggy Frog and his friends decided to stay with me and made an oath that they would stick around!

During the winter, the symptoms worsened. I got sick frequently, I was tired all the time, I was depressed, and the pain was now in my entire body, coming in a variety of ways (burning, pins and needles, gnawing). I knew that something was wrong because no matter how much I rested, these symptoms wouldn’t go away!

Months later, I was finally diagnosed with fibromyalgia (however, I’m still waiting on the CFS diagnosis). I’ve been put on some medications which help with alleviating some of the pain, fatigue, and anxiety/depression. I also took an online course called “CFIDS & FM Self-Help Introductory Course” which further educated me on how to lessen the severity of the symptoms as well as techniques to use in order to have better control of my chronic illnesses. The course was very helpful and the textbook has some great tips!

With having fibro and CFS came some losses and drawbacks: I’m unable to work, money is even tighter for me now, I can’t drive as much as I used to (I can only drive to places about 10 minutes away), I can no longer eat things that contain gluten (since these illnesses have triggered a gluten sensitivity), and my family helps out with errands.

Despite the obstacles I have experienced, I have been led to many wonderful things: blogging, opening an Etsy shop where I sell my crocheted items, volunteering for the Meals on Wheels program, and I have met a lot of wonderful people through my volunteer work and through blogging.

So yeah, I don’t like Foggy Frog and his friends very much…however, I’m learning to deal with them. With having certain tips and techniques up your sleeves, you can at least keep them at a distance!

About Jenn

JennJenn M. is the creator of the blog “Tangled Up in Passion” as well as the shop owner of the Etsy shop “Jenny Square Crochet.” Jenn has had fibromyalgia and CFS for over a year. Despite the hardships and changes that have taken place with her chronic illness, she has been able to find the blessings and positive opportunities from it. When she is not blogging or crocheting, she enjoys volunteering in the kitchen for the Meals on Wheels program, singing, walking her dog, and watching cartoons.

Physical Friday: 3 key steps to surviving a busy week with Myalgic Encephalomyelitis and Fibromyalgia

07 Mar 14
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So… it’s Friday morning here, and the Kickstarter campaign for Foggy Frog and the Pain Gang is now in it’s 6th day and 25% funded. If you haven’t checked it out already, please head over and watch the video to understand what we are trying to achieve. This week has been the busiest week I’ve had in over 8 months but I’m surviving.

Today is the first day in a week that I don’t actually have anything ‘planned’ with a set time I have to do it. I do want to catch up on the washing and do a few other littler chores around the house, but I don’t need to go to an appointment or meet up with anyone outside. Surprisingly, although I’m fighting with Foggy Frog to stay focussed on what I’m doing and fighting with my eyelids to stay open, I’m not actually feeling as bad as I thought I would today.

It’s Physical Friday today, so I thought I’d share with you the steps I took this week that I think may have helped me survive such a busy week without a full on crash (touch wood).

(c) Megan S, December 2013

(c) Megan S, December 2013

3 Steps I took to survive my busy week

1. Plan in Advance

I knew in advance that this week was going to be extremely hectic and possibly even stressful so when booking the appointments I tried to space them out over the week and made sure I had time to rest both before and after every appointment.

To keep the impact of the Foggy Frog campaign down as low as possible I’d planned in advance how I was going to launch it. I asked friends to prepare the food, I pre-wrote all the questions for the online launch, and I prepared and scheduled emails to go out on launch day. Without having done this the launch would have been a lot more stressful for me and would have probably caused a crash on its own without adding the rest of the week’s activities.

I also had my first late night class (a 3 hour class starting at 6pm) for the illustrating children’s picture books course. Although I had no way of knowing how I was going to cope with this class, I had made plans for E to be ready to pick me up at any stage if it got too much and I made sure the tutor knew that if I left early it wasn’t that I didn’t want to be there, it was that I couldn’t last any longer. (Luckily it actually finished slightly early and I made it to the end).

2. Be Gentle on Yourself

There were multiple times during the week when I started to feel that it was all getting a bit too much and I wasn’t going to cope. At these points in time I made myself stop whatever I was doing, sit or lie down, close my eyes and just breath for a while. This technique seemed to work well as ‘mini breaks’ throughout the days when there was no way I was going to get my normal rest.

I also prepared mentally and let myself know that it was OK if I couldn’t get everything done. I gave myself permission to leave things early, or cancel appointments, and even though I didn’t need to do this in the end having the permission removed the additional stressors from my days.

3. Take Regular Breaks

This was a big one, and I discussed in more detail on Wednesday how I was planning to do this. Finding time for myself and just relaxing was probably key to reducing the impact of this week on my health and wellbeing. I’ve had 3 baths this week, done several short meditations, and taken very short breaks just to breath as I outlined above. The baths all used Epsom salts which increase my magnesium levels and reduce cramping, so they were extremely beneficial on the nights I was feeling over it all. The other activities just gave me mental space to step back and assess where I was at thus avoiding too much stress and discomfort.

These three steps have been vital to me this week and I will keep on using them during the rest of the Kickstarter campaign. We have just over 21 days to go and $5,600 still to raise. I know that we will make it because I know how important this book is for our community.

Everyone I have spoken to who suffer from any of the invisible illnesses (Fibromyalgia, ME/cfs, MS, Lupus, etc) all have the same story to tell… Lack of awareness and understanding (and even misunderstanding) in the general community about what it’s like to live with these invisible illnesses. Foggy Frog is the first step in providing awareness and understanding to the wider community on what this is like.

Do you have any other steps you would add for surviving a busy week?

Have you found you can maintain a higher level of activity for an extended period of time without crashing?

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Please get behind Foggy Frog and the Pain Gang. Add your voice to ours in letting it be known that we want to be heard. A donation of just $1 will add your name to our list and the more people we get working together, the more likely it is that the general population will stand up and take notice. Visit http://bit.ly/FoggyFrog and pledge your support today.

Life with Foggy Frog and the Pain Gang: Trisha’s Story

04 Mar 14
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Trisha from Notes from the Fog has been a strong supporter of the Foggy Frog and the Pain Gang Campaign from the beginning. Throughout the campaign she will be sharing her own Foggy Frog stories on her site, but today she is sharing her story here for us.

Trisha’s Story

After the birth of my youngest son in January of 2000, I started feeling really awful. I was tired. My back hurt and I felt a constant, dull ache throughout my whole body. My mind got muddled and fuzzy. Sometimes I felt dizzy or like I was dreaming instead of awake. Nothing felt real but everything felt overwhelming. At first I thought it was just from lack of sleep but it continued. And worsened. I wondered if everyone felt this bad, that maybe all parents were this tired and achy, even though no one else mentioned it. I had no idea that Foggy Frog and the Pain Gang were working on me, preparing for a takeover.

In the spring of 2003, Foggy Frog and the Pain Gang made their big move and completely hijacked my life. Two days after getting my first massage, they hit me like a ton of bricks. Foggy Frog took up permanent residence in my mind, making me feel foggy and groggy all the time. I was so tired, my body feeling so heavy that I could barely move. I had difficulty staying awake to watch my kids. The Gnawing Gnats crawled all over my body, gnawing away on my bones and muscles, causing intense, constant pain. They were joined by the Stabbing Spiders, the Burning Bats and the Needling Nematodes and together they attacked my back, my hips, my neck, my shoulders, my feet, causing many different kinds of pain, all severe and agonizing. My whole body felt achy, like it had been run over by a big truck. I realized something was very, very wrong.

I went to the Naturopath I’d been seeing and she tested me for a few different illnesses, most of which were terrifying. While I was online researching the deadly blood disorder she suspected, something told me to look up fibromyalgia. I did and my jaw dropped. The description of fibromyalgia was describing me and everything that I was experiencing! I went back to my Naturopath and told her my theory. She reluctantly tested me for tender points and seemed irritated when I flinched as she prodded each tender point. She did more blood work to rule out other illnesses, (and thankfully that deadly blood disorder) then finally, very reluctantly agreed that my symptoms fit a diagnosis of fibromyalgia…which, in her opinion, wasn’t a real diagnosis and, therefore, couldn’t be treated.

I ditched her and went to an allopathic doctor, who also ran some tests to rule out other illnesses, then prescribed several medications that didn’t promise much relief. This doctor told me that fibromyalgia is something that doesn’t progress but never really gets better either, so basically I would have to learn to live with it. Lovely! I read and researched on my own and everything I read pointed to the same conclusion: Frog and the Pain Gang were here to stay. This was very discouraging to say the least. They were making my life miserable and I wanted them gone!

Over the years, I’ve learned ways to keep Foggy Frog and the Pain Gang from getting too far out of control. If I pace myself and don’t try to do too much (which translates to less than half of what a healthy person does in a day) I can keep the pain, fatigue and brain fog to a level low enough that I can semi-function…most of the time. But if I left my guard down and do too much, Foggy Frog and the Pain Gang quickly remind me that they have the final say in how much I can do. They are always ready, waiting to launch an attack and cause a flare-up of symptoms. With lots of rest, the flares do eventually subside but the reality is that every day, even the days I call “good” days, I feel Foggy Frog muddying up my mind and the Pain Gang chewing on my bones and bruising my muscles. They are a part of my life now and there’s no ignoring them, only learning to live with them.

003About Trisha and Notes from the Fog

In her own words, Trisha is a 43-year-old, foggy-brained stay-at-home mom who has struggled with health issues since she had mononucleosis at 16-years-old. Notes from the Fog is her journal of learning to live life well while living with the pain, fatigue and brain fog of fibromyalgia, plus all her favorite distractions such as pets, squirels and birds, her herbalism course, aromatherapy, teaching herself to sew and whatever else happens to strike her fancy.

Please don’t forget to head over to http://bit.ly/FoggyFrog and check out our Kickstarter campaign to get Foggy Frog and the Pain Gang out in the world in the form of a picture book.

Foggy Frog and the Pain Gang – Making the invisible visible by Megan Schartner » Foggy Frog and the Pain Gang Launch Party — Kickstarter

03 Mar 14
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Please check out my update on the Foggy Frog Kickstarter page.

I have provided photos from yesterday’s launch…

Thank you to everyone who joined us yesterday for the launch of Foggy Frog and the Pain Gang here on Kickstarter.

Please check out the project and donate. Even if it’s just $1… that’s enough to say, yes this is a book that we need in our community. If you already have, please share it with your friends and encourage them to join us as well. The more people we can get saying that we need this, the better!

We had both an online launch party and an afternoon tea to celebrate the launch of this project and I just wanted to share with you some of my favourite moments from the day.

Afternoon Tea

A gift for the launch from a close friend: My own Foggy Frog!
A gift for the launch from a close friend: My own Foggy Frog!
Celebrating with afternoon tea on a beautiful afternoon!
Celebrating with afternoon tea on a beautiful afternoon!

To make sure I didn’t overdo myself organising the launch, three of my closest friends made the sweet food we had at afternoon tea. I’d like to give them a massive thank you! All the food was delicious and all was Megan friendly (dairy and gluten free). Thank you.

Continue Reading on Kickstarter

Life with Foggy Frog and the Pain Gang: Jennifer’s story

06 Feb 14
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Jennifer from MEcuperate contacted me the other day about sharing her story with Foggy Frog and the Pain Gang. So today I’m passing over to her.

Jennifer’s Story

I was a very busy, very active, very social girl, burning the candle at both ends when i was visited by Foggy Frog and the Pain Gang. I didnt know who they were, but I knew I didn’t like them and I knew they were unlike anybody else I had known before. For months they stayed around , getting stronger and stronger, making me weaker and weaker and nobody could tell me who they were.

They took my life and changed it completely. They stopped me from being able to move my limbs, they made it so hard for me to sit up. They would cloud my brain so that i found it difficult to talk to people and they made it tiring for me to be in company. I would spend all day in bed with only foggy frog and the pain gang for company. I didn’t like them, I wanted them to leave and let me be, but they refused to budge and would punish me harder if I tried to fight them.

After 6 months the doctor told me who they were and through my own research I knew I wouldnt be getting rid of them easily, if at all. I was angry with them. I didnt let them stop me though, and although they made things very difficult I got married and had two babies.

Although I never grew to like them, I got used to their company and tried to work with them. I listened to what they told me and tried to live within the rules they set. It worked and I stopped getting worse. Over time and through lots of research I found things that helped me a bit and loosed the hold foggy frog and the pain gang had over me. I was able to sit up for longer and even move around the house, at my best i was able to do short walks outside. Life began to feel good again. But, they arent easy to get rid of, Foggy Frog and the Pain Gang must get bored so they change their tactics and throw new symptoms into the mix and get stronger again. But now I know them and even though new symptoms might put me off, I know if I listen to them and listen to their limits, I will have more control. Foggy Frog and the pain gang have taken away the life I knew, but they have made me stronger in more important ways.
image

About Jennifer and MEcuperate

Jennifer set up MEcuperate in August 2012.   Having been bed bound and housebound with ME for a number of years she felt a need to focus on the good things of life, such as, art, music, photography, poetry and all forms of creativity to help myself and others remain positive through difficult times. Without known cures those of us suffering from invisible illnesses find alternative ways to treat or ease their illnesses. Jennifer wanted a place we could share experiences of what helps us to help us make the most of life that we can and she has created that with MEcuperate.

Foggy Frog Simple Logo

Life with Foggy Frog and the Pain Gang: Jordan’s Story

04 Feb 14
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I recently received a wonderful email from Jordan over at Qatmaster which I feel encapsulates how living with an invisible illness can feel, and what a blessing the WordPress family is to have around when you’re struggling. Thank you Jordan for letting me share this here as part of the ‘Foggy Frog and the Pain Gang’ campaign.

Jordan’s Story

Invisible illness.

What a beautiful description of the worst and best thing that ever happened to me! While I don’t think I’m as invisible as I once was (down to 110 from a very fit 150, less than ten teeth left, somewhat less attractive than I thought I ought to be…), at a glance, I still appear relatively fit. Maybe just rundown a bit.

After 11 years with Reflex Sympathetic Dystrophy (chronic pain)/ Complex Regional Pain Syndrome (that pain is gonna travel where ever it wants to whenever it wants to)/Chronic Fatigue (just a side effect of my body’s struggle with the pain), I have finally begun to feel just a little bit better about myself and my life.

I don’t know whether it’s because of the new Volcano vaporizer I got for xmas from the Best Sister in the World, or the Coconut oil I recently added to my diet, or the beginning of my Third and probably final Saturn return cycle, but something is different.

Maybe it’s just a fluke and things aren’t really different. Maybe I just THINK things are different. I’ll take it. I don’t care. Anything that improves my life situation, I embrace. Even if it’s temporary. After all, I did just damage my left hand. I don’t know how that turned into a whole body thing, and I don’t know why my left shin is still numb after four months. When I see my doctor, day after tomorrow, I will draw out a circle on my leg of where I’m numb so she can take photos of it.

And that’s my biggest blessing. I have an actual pain doctor. A dctor trained in treating pain of any type. She is phenomenal. She has never once doubted my situation (despite the physical therapist at the other end of her office throwing up her hands and saying I can’t help you if you wimp out every time I touch you. That therapist no longer worked there a couple of months later…), and has been so completely supportive. When I asked about med cannabis, she said, no problem, drew up the form on her pc, filled it out and said get your card asap. It will help a lot. she was right. The story of that begins in my main blog which is more about the things that are right in my life, travels to my 2nd blog (vaping4life, which is not yet truly live), and will eventually get its own blog just so I have somewhere to go when I need to talk about THAT.

And now I have a community I thought I would have to LOOK for, and it has already found ME. There is a Universe (god, if you will) and she (he, it, they, what ever) is looking out for me and the rest of us as well. I feel so gratified to have found you, thank you for reading my blog and letting me know you were here too.

About Jordan

Jordan has recently commenced blogging. He has been ‘medically’ retired and uses his blog as a means of keeping him on his path. He is a “gaming pc builder with a 30 year history of writing, teaching writing, biz coaching, and pc work of a number of kinds.”

Invisible Illnesses: Campaign to Raising Public Awareness

28 Jan 14
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Foggy Frog (c) Megan S, January 2014

Foggy Frog (c) Megan S, January 2014

The image above is one of the early sketches of Foggy Frog that I have made for the “Foggy Frog and the Pain Gang” campaign.

This is a project created by the Spoonie Community (those of us suffering from invisible illnesses) for the Community. We aim to provide information and support; encouraging those outside our community to understand and make informed decisions as to how they act around those with invisible illnesses.

Please check out the campaign page to see what our mission is and how you can join in.

Invisible Illnesses and Public Perception

09 Jan 14
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Image curtesy of Facebook

Image curtesy of Facebook

This post is written in response to day 3 of the Daily Post Zero to Hero tasks.

I’ve seen this image going around Facebook a lot lately and it has got me thinking.

Since my crash in April last year, I have become aware of this large community that I didn’t even know existed before. The Spoonie Community is one that I’m finding myself relating to, and becoming involved with, more and more as I increase my attempts at raising awareness and understanding how chronic illnesses affect our lives. Although my obvious focus is on Myalgic Encephalomyelitis, Fibromyalgia and Pelvic Congestion Syndrome, I am recognising the similarities between the symptoms and issues I face with these illnesses and those faced by others in the Spoonie Community.

A big issue is the fact that awareness levels about chronic illnesses in the general public, especially illnesses with invisible symptoms, is low almost to the point of being non-existant. I don’t remember ever talking about chronic illnesses in school when we learnt about health related topics. There was information on acute and life threatening illnesses such as cancer, and some information on mental health and topics like depression, but nothing on chronic pain, brain fog and fatigue. This lack of information and awareness leads to a lot of negative responses to people who suffer from these illnesses, with comments like those in the image above that demonstrate a lack of awareness and belief in the reality of the symptoms these people are facing.

Some of the illnesses, such as Myalgic Encephalomyelitis, isn’t even widely recognised or accepted as an actual physiological condition in the medical community. People suffering with these conditions often have to face not just the constant and often extreme symptoms caused by their conditions, but the disbelief and lack of sympathy from those around them. Many are even treated like it is all in their head and told that the issue is psychological.

I believe that it is important that awareness of these illnesses be raised in both the general and medical communities. This awareness raising should begin in schools at a young age to increase acceptance and understanding in the community.

Today I am taking the day to focus on my personal visions of what a successful 2014 would look like for me. On top of the obvious answers such as increased or stablised health, returning to work in some capacity, and enjoying time with my family and friends, I believe there will also be a section in there on increasing public awareness of invisible illnesses to help increase acceptance and understanding. I already have some ideas on how I can do this and I will share them with you over the next few months.

To succeed in changing public perception I believe we all need to work together. There are already projects out there that are focusing on increasing awareness around particular topics, such asthe Canary in a Coal Mine film focusing on raising awareness of Myalgic Encephalomyelitis, that focus on engaging adults but from what I have seen so far there is still a gap in education that would be suitable for all invisible illnesses and all ages.