Where have I been good question?

I've been on a wicked roller coaster ride and thats wicked as in bad not wicked as in good :P.

Let me start from the beginning from my last blog feeling down, old before my time etc etc

then ..........................................................

the sun came out and for the first time in over 6 months I felt good, in fact I felt invincible. I took it slow sitting out in the garden watching the little man play happily in the sun, building up my energy levels. Started to do a few small walks with the dog, all still good. Even popped into my work as I started to feel like I actually might be able to return to the job I love and started to make plans for my return. I felt happy.

Remembering of course I still don't have a day without pain, in fact i'd be lucky now to think of a minute I have without pain. But the sunshine just seemed to lift my mood, got me out of the bedroom and stopped me feeling sorry for myself. Then as you do I took it too far by doing 2 long walks, first one in the morning and that was fine, then before hubby was due back from work I thought i'd walk the dog again with the little man save him the job.

This is what came back

The pain was literally ripping through my body and I was walking back in the smallest of steps hence penguin like just to get my kids back when all I wanted to do was lie down on the pavement and not move a muscle until the pain went.

Seriously my life is a joke.

So I'm afraid today's blog is all about my condition as it also coincides with National Fibromyalgia Day

and this is dedicated to my friends and family who may not understand what's wrong with me and I can never find the right words to say.
Today, Sunday morning I am lying here with my whole body aching, I know I need to wee but although I have an ensuite the distance to the bathroom outweighs the pain of holding my bladder against the pain of moving ( to give you a brief idea of my pain levels).
I am due to see my consultant in just over a weeks time and have huge questions for her and this lifelong condition without a cure I my have the main one being what can I do to create some kind of balance in my life??
I wrote out a list of my symptoms for her:

(you may switch off now if this is boring you but I kind of need to document it for my own good)
Pain - both arms - both legs (ache)
Increased pain - joints inner knee, ankles, shoulders (especially right) elbows, wrists, hips etc (sharp stab like pains)
Impossible pain - between shoulder blades , neck, back and ribcage / chest (spasm pains excruciatingly painful).
Tired all the time (even on waking)
struggle to sleep as wake when turn over.
Wake tired.
By midday want to close my eyes and sleep again.
No energy.
Temperature control - either too hot or too cold no middle ground.
When stressed start to run a fever.
Wake every morning with a runny nose (gone by lunchtime????)
Struggle to drive (increased pain)
Struggle to walk (increased pain)
Mood swings /happy/sad/moody/angry.
Have very depressed days.
Rarely see anyone other than doctors.
Can't carry my baby at ALL increased pain times by 10000.
Headaches which increase to migranes.
Feeling blurry / spinny.
Stomach pains.
Sometimes constipated sometimes the other way round.
Itchy skin.
Nauseous.
Burning in fingers.
Sore throat.
Always thirsty.
Always have sore throat.
If I write - increased pain in wrist /shoulder blade / muscles top left arm.
Computer (inc games) - increased pain wrists / fingers.
Walking - increased pain hip / ankles / inner knee / back.
Driving - wrist / shoulder / inner knee / calves / ankle
Sleeping - ankle / shoulder / arms / knee.

Nice eh????
So when my family moan at me (and they do) for not seeing them so often as whilst i'm off sick as I should have more time for visiting please please try to understand what even getting into a car does to me.
Trying to make people understand what's wrong with you when you look so normal is the hardest thing.
When people complain of the pain their body feels when they have flu, imagine that every day and being told there is n cure and you'll now have it until you die BUT there will be better days but worst days.

So I brought a book how to live with Fibromyalgia and most importantly how to tell people whats wrong with you. The author has Fibro so its coming from her point of view and in the foreword (after having it for years) she states she can manage a couple of hours a day on the computer now and one small walk a day???? Seriously!!

This article is by far the best I have found written to try and attempt how to understand well little old me and anyone else that has fibro

Understanding Fibromyalgia If You Are a Friend or Family Member of a Sufferer

Angie Shiflett, Yahoo! Contributor Network
Jan 15, 2007

If you are a friend or family member of a person who has Fibromyalgia, it is vital that you educate yourself thoroughly on the condition. Fibromyalgia can be a very complicated condition for the sufferer, as well as those people the sufferer comes in close contact with. It is not easy to detect when a person has Fibromyalgia because you cannot see the effects of the illness visibly. Many times, people may take for granted that a person is truly sick if they cannot visibly see the illness. In this article, I will explain general ways that a person can understand Fibromyalgia if they are a friend or family member of a sufferer. The first way that you can understand Fibromyalgia, if you are a friend or family member of a sufferer is to learn as much as you possibly can regarding the illness. One of the most important things that you should grow to understand about Fibromyalgia is that it consists of numerous symptoms. This comes because of the illness stemming from an issue within the sufferers central nervous system. With the Fibromyalgia sufferer, there is also a lot of pain that stems from muscles and the soft tissues in the body and the fact that they lack the strength and ability to replenish themselves as healthy person's muscles and tissues do. When you mix all of these sensitivities together, you have a wide range of symptoms and complaints. Many Fibromyalgia sufferers may express the fact to you that they are in pain, others may mention it briefly, and still some may not mention it at all. Just be aware that the person does suffer, whether they talk about it or not.
As a friend or family member of a Fibromyalgia sufferer, you may find that the person does not seem to be the type that likes to touch through handshakes, hugs, and so on. It is important to understand that this is not truly personal. As a sufferer of Fibromyalgia, I have hurt the feelings of others because I shy away from hugging and other types of physical activity, like play wrestling and so on. It is hard to explain to people that you simply hurt very badly at times, and it is easier to avoid these activities to save yourself some physical pain. If you know a Fibromyalgia sufferer that does this, do not take offense to it. We may really want to play around and hug and other things, but sometimes, the pain is so overwhelming, we just cannot.
If you are trying to understand Fibromyalgia because you are a friend or family member of a sufferer, you should understand that it is often difficult for the sufferer to make plans and commit to things. Some days, it is very hard to simply get out of bed. Other days, it takes all that we have to simply clean the house - even if the mess is small. I have found that my family and friends often do not understand why I do not visit them very often, or why I do not make plans with them very often. It is very hard to explain that I must use the energy that my body has as efficiently as possible. I have two children, both boys. My oldest is six years old and my youngest is four years old. I home school them, and write for various online venues. In addition, I keep house and do most of the shopping. Because of the amount of things that I have to do, it is difficult at times, to exert any more energy. It is important to me not to allow my immediate family to suffer, so, many times I have to postpone activities with friends and other family members. It is not that I want to; it just ends up that way sometimes. Do not be offended if you live outside of the home of the Fibromyalgia sufferer, and do not see them very often. Just try to understand it. Keep in touch as often as you are able by email, instant messaging, snail mail, and/or telephone. Not only will it keep the relationship positive and productive, it will mean a lot to the Fibromyalgia sufferer that you care and are willing to step up and take the plate when they are sometimes unable to.
If you are working to understand Fibromyalgia, there is another important aspect that you should be aware. Fibromyalgia sufferers often lack the characteristics of a good memory. This is often referred to as "Fibro Fog". It is often difficult to remember small details. We may misplace items frequently, or have to be reminded of things often. It is not that we purposely forget important details, we actually try very hard to remember them, and it is just that it is a part of our illness. If you are a friend of family member of a Fibromyalgia sufferer, it is important to understand fibro fog and accept it.
The above listed suggestions are really just the tip of the iceberg when dealing with a friend or family member that has Fibromyalgia. There are many other things that you can do to assist the person with Fibromyalgia as well. The Fibromyalgia sufferer will not ask for help. It is partly from pride, and the other part is not wanting to inconvenience others. Please refer to the following list for other ways that you may assist the sufferer:

If you must do some shopping, call the sufferer to see if they would like to ride with you or if you can pick up anything for them. It is often difficult to get out of the house, drive, and walk around a large store if you are in pain. This would help them a lot.
If the sufferer has children, offer to take them for a couple of hours or come over to sit with them so that the sufferer can enjoy a warm bath, or a nap. It is often quite nice to be some peace and quiet - especially if the home is always bursting with energy.
You may want to help the sufferer with various tasks, such as cleaning up the house, laundry, and/or yard work. It is often difficult to perform these tasks, and the help will be appreciated.
Keep in touch with the sufferer. They often feel as if they burden people, and that people may not care anymore...if you keep in contact with them and let them know that they are still loved and valued, they will be very thankful.
The Fibromyalgia patient must keep their doctor appointments. If you are able, encourage them to pursue treatments and medical care. One way you can do this is to offer to take them to appointments or ride with them