How to deal with me; a guide to a mad woman with chronic health issues.

It feels like it has been months since I've been well enough to tolerate a couple of hours out of bed and out of the flat; I know, asking for both is just greedy, right? I'm feeling like being greedy and demanding that my body go along with it, but apparently it has decided to rebel at this suggestion and stick two fingers up at what my mind would like to do. I think that it has been the beginning of October that I last felt even vaguely human. Since then pain levels decided that it would be fun to just shoot through the roof, my speech therapist vanished off the face of the earth and I still haven't had the nerve test that I was told I was supposed to have two years ago.

Just to make things extra fun my little finger decided that the two top sections no longer wanted to be friends with the bottom section and attempted to part ways. Well, they did temporarily part ways until I gave them a sound scolding and manoeuvred things back to their correct position. Pete bandaged my little finger and ring finger together to make sure that I didn't knock it in the night and cause more damage. It has decided to remain reconciled, thank goodness. However my shoulder blade appears to have thought it seemed like a good plan and is painful enough that it is stealing my breath at the moment. Hopefully the bout of rather extreme language will have persuaded it that attempting to do anything untoward and cause me more pain is going to result in either an emergency GP visit or a hospital trip - both of which I hate with a fiery passion. I am choosing to assume that my body and mind agree on that one.

I think that it is incredibly difficult to understand just how tiring and wearing chronic pain can be. I also suspect that because I have a habit of assuming other people are as honest - and blunt - as I have a habit of being, when they ask how I am, they want the truth. I tend to tell the truth; I am not moaning, I find that tedious, I just have a habit of being brutally honest, then I get confused when people react in ways that don't quite fit with my expectations. So, here is a quick guide to me:

• If you ask how I am, I will be honest. It isn't a complaint and I don't expect you to do anything about it. That's what doctors are for.
• If I cancel plans at the last minute - which I often have to - it isn't because I don't want to chat over Skype or have you come and visit. It is because I am in enough pain that I feel like vomiting, even with my vast quantities of medication. I just don't like to tell you that, because most people are a) grossed out and b) don't know how to react.
• I don't want or need you to be sympathetic. I really don't want or need you to pat me on the head or patronise me. All I expect is for people to listen to an answer that they asked for - otherwise, please don't ask. I am quite happy for you to be as honest as I will be. If you want to say "Fucking hell, that blows big-time" then I'm good with that. Or if you want to say "That's shitty and I'm depressed, can we talk about something else?" then again, that's fine. You're being honest with me and I like that. It means I know where I stand.
• I am entitled to have days where I sulk. Pain is bad enough if you break, or dislocate, a limb. It may give you an idea if I say that my finger parting ways with itself may have prompted lots of swearing, then pain level was nowhere near the top end I have on a daily basis.
• Along with the pain I have chronic fatigue. That does not mean I am tired, so please don't tell me that you're tired too because you didn't sleep well. That just pisses me off. I would give my right arm to just be exhausted.
• I get different types of pain and different types of fatigue; the fatigue can be like utter exhaustion where there just isn't enough energy left in my body to lift my hand up a couple of inches. Or it can feel like lactic acid burning through my muscles, in combination with utter lack of any ability to move at all. I can also be mentally fatigued and have no ability to think, speak, or know my own name.
• Pain can be deep muscular and tendons - sort of feels like my bones and muscles are swollen and fighting each other. That is the one I hate the most. Then there is a surface pain like extreme skin sensitivity where even a bed sheet can be so painful I feel like vomiting. There are times that passes over into feeling as though I am about to black out.
• That pain and fatigue is there all the time. If 10 is the worst pain you can imagine, then my average is an 8. However since October it has mostly been 10.

I did say that I have a tendency towards honesty and bluntness, but I have tried to behave a little there.

Fibro also has a lot of other symptoms that people may not be aware of such as sensitivity towards heat, light, sound, smells. I have all of those and to a degree always have - although they did get a lot worse with the fibro. If I have a problem with a scent, whether it be fabric conditioner (almost always) or perfume, I am not being rude. I am being ill. I am sorry if me having to leave or going white and sick upsets people, it is not intentional. It is just part and parcel of that wicked little beast named fibro.

So, that's me talked out for the day. What's up with everyone else in the world?