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Chronic Fibromyalgia & Chronic Fatique Syndrome - My illness

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For those that WANT to understand......

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 It all started around 2007 for me, slowly creeping on and on and on over the years. I just 'got on with it' and suffered in silence, I was ashamed. Simple things were getting difficult for a while, with a few minor issues I was trying to fix. Everything was always a short term ease/fix and that was how it would always be for years. Every time I tried to do fix some things, sometimes things would help, but then at other times, the exact same thing didn't help. It was a complete nightmare!!

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The one thing I could always rely on though, to bring just a hour or two of comfort and ease, was a lovely hot bath, BLISS. But I still suffered greatly.

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Years later.... The middle of 2015 was the absolute worst time for me, I just woke up one day and a bath didn't do what it used to do. My first thought was 'Oh no', and after a few more, I realized I took those baths for granted over the years as I always thought it was my little life saver, and I realized they would never help me ever again in the way they had done for nearly 8 years.

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Everything suddenly just became very unmanageably chronic and went wrong. And I mean EVERYTHING!!! I tried my best to solve all of them but failed.. 

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Most of my friends & family understood, others didn't.

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​About 7 months later of chronic issues, I have been diagnosed with this disease. There is no cure!!! Just drugs to ease it a bit. It will never be better!!! The last 7 months were so hard for me, and it's still hard now, but I will find my happy medium.

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I want to thank the friends I have for all the lovely words you have spoken/written to me, those who understood, your patience, support and helped in one way or another. Your all amazing!! You know who you are xx <3 xx

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A Letter to those without Chronic Pain
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In the spirit of informing those who wish to understand. These are the things that I would like you to understand about me before you judge me (& even if you do know the story, who the fuck are you to judge anyway :p )

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!
I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

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​Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

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​Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

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A fantastic article that explains it that is spot on!!! https://themighty.com/20…/…/facebook-posts-chronically-sick/

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I come on SL as it has been a love that I had long before Fibro and even though sometimes it interferes and it can also cause me to struggle inworld. Inworld, i have a taste of the life i once lived when i was more able. A time when the simple everyday tasks was not a massive struggle, a nuisance or the one massive job that may force me to be bed bound for days. And inworld I can have a taste of the real me and be myself <3 and stay in touch with friends and the outside world <3