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message 1: by Vaishali • [V.L. Book Reviews] (last edited Sep 15, 2019 02:18AM) (new)

Vaishali • [V.L. Book Reviews]  (vaishalid) | 91 comments Mod
So we know we're all here because essentially we share a love for reading and books. But i also wanted this group open for chronic health sufferers to integrate and get involved how and when possible. For me my health ruled my life for a long time, and reading was this holy grail of sorts that was the best possible distraction for me, but it was also healing, which is why i hold certain books very close to my chest because they were my best friends when i was very alone.

Reading for us is so important, so crucial, so vital because we have little else to look forward to, and because it's a lifeline that never stops giving. So i crammed and devoured book after book for a steady stream of the imaginative and fictitious to sweep me up and take me somewhere comforting and welcoming, because my life certainly didn't feel that way. So i'm going to start this discussion off by just telling you a bit about myself, and hopefully you will feel encouraged to share a bit about your own lives and stories of bad, perpetual health :)

I'm Vaishali, and i've struggled with Chronic Fatigue Syndrome/ Fibromyalgia for many years. It's been very difficult but i'm lucky enough to have the support of my loving family, especially when i had little support from the health care system. My poor health is something i still have to deal with daily, and so i'm dependent on my family for a lot of things. The simple things that people don't think about? The everyday motions that most can do with their eyes closed? For me they are huge tasks that take so much effort. I have little energy to expend, i can't have long conversations, i can't overexert myself because i will literally be paying for it for many days to come. I have to listen intently to my body while accepting that it might never listen to me. I have to pace myself, and take each day as it comes - much like that saying - and try to find some joy in the small things, in small ways. It's a strange feeling to be trapped in a state of inertia and frazzled thoughts when people were made to move and act and do and participate so you imagine how troubling this can be.

I created my book review blog to give me some kind of direction and focus, so if you'd like to take a look, here is a link! - https://vicariousliving-bookreviews.w...

As much as i love reading and reviewing, both also come with complications because the constant lethargy is both a chronic mental fight as much as it is physical. So for those reasons i'm a slow reader and a slow reviewer, but when we have slumps? They are so much worse to get out of and often last longer. Most times i don't even remember what i've read the day before so i have to make notes every step of the way.
Personally i find that i can't enjoy my life the way i want, and this also includes reading - we just can't experience complete joy when our symptoms daily drag us down, so desires can feel baseless and as dry as a drought. I love reading, and spend most days reading but reading also feels like trying reach a source of water when there is a glass wall in between you and your thirst.

I think it's so important that people support each other, and especially people like us who feel so alone, thinking that we are solely experiencing something that no other person on this Earth can possibly understand. But let me tell you that yes there are thousands going through similar ailments, so let's reach out and do what we do best. Let's give each other some love <3

Virtual tight hugs to every one of you who needs it ! <3

message 2: by Ayesha (new)

Ayesha Tariq Ali (ayeshatariqali) | 3 comments Hi V,

Thank you for creating this section of the group. You raise a very important reflection into the topic. I too have used reading as a heaven from worldly troubles including my health.

I battle several conditions, some of them autoimmune, and the thing about the army inside people like us is we never know when it is going to be a good or bad day... when our symptoms will die down or feel better. I too have experienced really bad fatigue and have very bad memory issues.

It is difficult being a student or a young person and facing these sort of illnesses, the invisibility totally misunderstood by our peers who in comparision, seem to be so active and buzzing. Books serve that buzz for me, once you relate to the main character, you start feeling an adventure we sometimes unfortunately cannot get to feel ourselves.

I too do not remember the plots or even book names sometimes, just after a few days. What I have learned is that the reviewing process is beautiful in the way that it is your reflection and not a summary with spoilers so perhaps we do not need to worry so much about our memory issues, though of course many small reminders are available everyday.

I personally consider it a heavy plate for myself, being able to drag myself through university whilst still maintaining my valedictorian status and also achieving many other roles and volunteering work... I feel better by giving lots of time to support others. Only in the recent months have I realized the serious implications of burnout and the importance of self-care.

That brings me back to reading, a good self-care activity and of course again, something to help distract and quieten down the negative mind of mines although of course people think I am perfect on the outside.

I hope to use this group and my hope for getting back to reading moderately to try feel even a little better.

Thanks once again! And apologies if this whole message feels like a lost train of thought...

- Ayesha

message 3: by Ewe (new)

Ewe Linka (iamewelinka) | 7 comments Oh, lots of hugs and positives thoughts ! Thank you for sharing :)
- Ewe

Vaishali • [V.L. Book Reviews]  (vaishalid) | 91 comments Mod
Ayesha wrote: "Hi V,

Thank you for creating this section of the group. You raise a very important reflection into the topic. I too have used reading as a heaven from worldly troubles including my health.

I batt..."

Hi Ayesha 😊

I have to tell you that it brings me the warmest feelings and sense of appreciation when people share their stories - especially about their struggles with health - so thank you so much for enlightening us with your own situation.

It really is true that reading becomes a balm when we are at our lowest, it teaches us so much and inspires hope to, and I'm glad reading is so special to you for that reason.

For most people they are practically bed-bound with severe autoimmune conditions. It can feel like there is no hope of feeling better or fighting your way through perpetual lethargy. I personally can't do as much, and I know there are a lot of people who have such severe fatigue that even getting out of bed is impossible. This is why I find it even more admirable that you are able to do so much, which is positive and encouraging to hear :)

It's absolutely an illness that has the least understanding. Invisible diseases are poorly understood and because of that people are suffering with misinformation. I think somebody can only truly understand something if they live it, and even trying to explain the oddities of your bodily reactions to other people is not easy. Sometimes even words don't do the best justice.

I agree! Our lives I feel are limiting because we have to live within certain lines, so it's an enriching thing to live different ones through our most loved protagonists. Reading is absolutely a form of living that will never stop giving 😊

It's a great mentality that you have - even though it must be hard at times to cope with symptoms - that you still find ways to help people and further yourself. But like you say burnout is a real thing, and we hear this word 'pacing' everywhere which is really important because pushing ourselves can have major consequences.
I have to live quite a structured life for this reasons, i.e. trying to get regular sleep, eating regularly and even taking important breaks between whatever we're doing. I also can't cope well in energy stimulating contexts so I don't fare well in loud spaces or around so many people. My bedroom is my safe space.

Please feel free to continue talking about any experiences - good or bad - that you are having with your health and life. Sharing is really important, and I really want to build a space where we can feel comfortable doing that!

Thank you Ayesha <3

Vaishali • [V.L. Book Reviews]  (vaishalid) | 91 comments Mod
Ewe Linka wrote: "Oh, lots of hugs and positives thoughts ! Thank you for sharing :)
- Ewe"

Thank you Ewe 😊

message 6: by Carol (new)

Carol Pennington | 3 comments Vaishali, thank you for creating this space for us to share and to support one another.

Prior to my illness, I was a very active mother of 2. I worked as an RN in the emergency department. Adrenaline was my drug of choice. Then.... I was diagnosed with breast cancer just over 10 years ago. The first year was very tough, bilateral mastectomy with reconstructive surgery and chemo. Investigation into an abnormal chest x-ray also revealed I have Lupus.

My life now is vastly diffferent from what it was before. I never know how I am going to feel from one hour until the next. Planning anything is next to impossible. Even on my best days, I’m only about 10% of what I was before, both physically and mentally. I can no longer work which is devastating in itself. I want to enjoy the grandchildren I have been bless with, but the energy is just not there.

Reading is my sanctuary. It can pull me out of myself like nothing else can. I prefer to read stories that take me to places I’ve always wanted to visit, but will likely otherwise never have the chance. I love to read uplifting stories that bring hope to my life. Sometimes, I just want to get lost in a story that takes me completely away from this world. I became a reviewer to help give back to the authors who have given so much to me.

message 7: by Vaishali • [V.L. Book Reviews] (last edited Oct 19, 2019 02:22AM) (new)

Vaishali • [V.L. Book Reviews]  (vaishalid) | 91 comments Mod
Carol wrote: "Vaishali, thank you for creating this space for us to share and to support one another.

Prior to my illness, I was a very active mother of 2. I worked as an RN in the emergency department. Adrena..."

Hi Carol!

That's no problem at all. I felt alone for a very long time, and still do to this day, so I really wanted to do something that reached out to others in the case that they were feeling the exact same way 😊

Thank you dearly for sharing Carol, I can't begin to imagine what that must have been like, and I send prayers and warm wishes, and hope that find a way to feel joy and live your life the way you want to. Chronic illnesses are so much more than just energy limiting, they dilute your life and your desires. It's really not great, and it's even more difficult to maintain positivity when you feel so low.

I absolutely understand when you say your life is vastly different, it's almost like this is now a new 'normal' that you have to live with, and we feel only a fraction of what we once were. I hope that you someone gain some energy to enjoy your grandchildren, that's an experience that you should undoubtedly enjoy so I hope that get that 💕

I'm just the same, any story that provides hope, happiness, and enjoyment and brings out the best in me is one that starts to become something important to me. And you know a great thing ? Most authors probably don't even know what kind of a lifeline they are giving us and are still continuing to give us!

Let's hope you continue to read great books that lift your spirits 😊
It is difficult to remember how brave we are, and that we fight every day without realising it, which is a feat in itself 💕😊

message 8: by Adrian (new)

Adrian Rose (adrianrose9) | 8 comments I hope this doesn't go long enough to irritate anyone, but my story is a long one, as I have suffered from some form of chronic illness for most of my life.
My disability is a combination of genetics, misadventure, and medical incompetence. I have had symptoms of chronic pancreatitus since I was a teenager, but was not diagnosed until I was almost 40 years old. My father had a bad pancreas as well, though he was also an alcoholic, so no one thought to check if the condition was genetic until I came down with the disease. This condition keeps me on what I call a uniquely specialized diet, meaning that, except for special occasions, I cannot eat any food that I do not prepare myself. This precludes my attending most family functions, or even being able to go out for lunch with friends.
In addition to the pancreatitus, I also have a condition where I have very severe reactions to any and all types of metal. This means that I cannot wear jewelry, a wristwatch, or even have a zipper or metal snaps on my clothing. With this condition, surgery of any kind can become a life threatening situation, so, when I fell and tore the meniscus in my left knee, I was appalled when I ended up with a doctor that not only did not believe what I was telling him about my condition, but also refused to give me the full dose of Benedryl that I requested before the surgery to negate the effects of the surgical instruments that he used on me. He soon learned how he had wronged me when my entire leg swelled up to twice its normal size right after the surgery and stayed that way for a full 14 days. By the time the swelling started going down, all the muscles in my leg had deteriorated to the point where I needed physical therapy, was on crutches for over a year, and ended up having to wear a brace on my leg for the rest of my life. Unfortunately, I was unable to sue this doctor as I was under his treatment at a charity clinic where he was working pro bono at the time, and one of the papers that patients had to sign to be treated there was an agreement that they could not bring malpractice suits against the doctors.
As if these things were not bad enough, I have also had rheumatoid arthritis since I was a child, and, probably because of my other health complications, that disease has progressed more quickly that it normally would have. Though I am now only in my late 50s, the arthritis has caused one of the vertebrae in my lower back to become partially displaced and frozen in that position. This causes great pain when I walk, making it necessary for me to use a walker for added support. My hands, shoulders, and neck are also effected, causing me daily pain. Activities such as opening bottles or jars, getting up out of a chair, or even picking up my cat can be excruciating. Due to my reactions to metal, any replacement or corrective surgery is out of the question, and the doctors have told me that I will likely be in a wheelchair within the next few years.
All of this adds up to the fact that I am basically housebound for the majority of the time. I go out for groceries twice a week, and I am a member of a book club that meets once a month at a local cafe near where I live, but other than that, I remain in my home and depend on the internet to allow me to keep in contact with my family and friends. This is the reason why sites like this one mean so much to me. It is the only way that I have of talking to people who may understand my frustrations and struggles.

message 9: by Vaishali • [V.L. Book Reviews] (last edited Dec 01, 2019 03:27AM) (new)

Vaishali • [V.L. Book Reviews]  (vaishalid) | 91 comments Mod
Adrian wrote: "I hope this doesn't go long enough to irritate anyone, but my story is a long one, as I have suffered from some form of chronic illness for most of my life.
My disability is a combination of geneti..."

Thank you for sharing Adrian :)
And believe me, there's no space for irritation where our lives our concerned, our problems are paramount to us, and should therefore matter in society.
You've definitely had a long and arduous struggle and in my own experience I've found managing my health issues very difficult - it's a difficult thing to tackle when you don't know what your body wants or what specifically is happening to it. I was lost and confused for a very long time, in a very morbid kind of limbo, and similarly to you experienced (in my opinion) professional neglect in the healthcare system. Unfortunately I know we are not the only ones.

IBS is one of the accompanying conditions I have, and much like you I have to be careful of what I'm feeding my body...this is still something I'm trying to figure out, but I'm so glad that you're managing as best as you can. It's very much as if we have a specified criteria to live by - one that is unforgiving, restrictive and heavily limits our abilities (at least this is the case for me.)

I'm so sorry and very appalled to hear about what happened to you during your surgery - it's honestly this kind of ignorance and negligence that puts us in a trifling and bitter position. Your doctor certainly should have listened to you, but as I've come to know most health professionals don't know enough about chronic health diseases to be able to help us in the ways that matter. Still you blatantly spelled it out, so your surgeon was absolutely at fault. I'm sure there are practitioners who avidly support the unlearning of false misconceptions about chronic health issues, but the fact is that there aren't enough. Most people aren't actually receiving the necessary help, and that's also because doctors don't have the resources to help.

Again, just hearing this is both frustrating but and enlightening. It's why I believe we need more people to talk about and communicate their situations.

I'm glad that you still manage to meet with your book club, that's such a fantastic positive. I'm also housebound. If I go out for even a couple of hours, I'm basically trading in few days of my own life afterwards because my body just can't procure the energy I need. I quite literally feel as if i'm allergic to the world.

Although the internet is an accessible and personal means for us share and connect with the world, it's inviting just as much as it is frustrating that we have to use this to find people and places to feel welcome. It's very isolating indeed.

I really hope you are doing ok Adrian, but imagine - just like me- you are just managing the best you can. I don't feel right in saying I hope you feel better, because your affliction will still be there, just fluctuating day by day. What I can say is, take care of yourself (as I'm sure you are) and i hope you have people around to help you should you need it, and ways to offer yourself relief from pain as well as ways to find some happiness 😊 Xx

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