At this point I have three pain causing conditions; Fibromyalgia, Arthritis and Sarcoidosis. Fibro is, of course, across my whole body at different times, but my upper arms almost always hurt. The arthritis is mostly in my hands; it mostly makes jar opening really difficult! The sarcoid has been diagnosed as in my lungs and lymph nodes.

So there are pains that are always there at various levels.

And then there are the unexpected and weird pains.

Like the day that the skin, yes the skin, of my left thigh hurt. No mark on it. Nothing obvious. But it hurt when air touched it. And really hurt when clothing touched it. Taking a shower was not fun either.

Today the same sort of pain was was on the skin between my index and middle finger of my right hand. Have you ever tried to hold anything when you’re right handed and that particular piece of skin hurts? I do not recommend it!!

And then there are the good and bad days of arthritis. Some days I almost forget it’s an issue. Then there are the days when I suddenly can’t move my pinky. Usually my right pinky. Because of course it affects my dominant hand.

As I write this, I realised my nose hurts. It’s where my glasses sit, but it doesn’t usually hurt!

So how do I cope? What else can I do but get on with things? I still have a job and a husband and a son. And a house and two cats and a fish. I’m fairly busy.

But I also build rest into my day. I have to or I’ll regret it later. So when I get home from work, I rest. Whether I feel up to sitting on the sofa watching TV and knitting or I need to actually go lie down and try to get some sleep. The resting is usually from around 1430 until I start making dinner at 1700.

Unless Adam is making dinner, which he does a few days a week. In which case I rest until I have to tidy the kitchen for him to cook in! Breakfast dishes are done in the morning and we’re all out for lunch, but there’s always odds and sods, like water bottles and my travel coffee mug to be sorted out!

So I push through the pain. What I really have problems pushing through is the fatigue. Now, lots of people are tired these days. We have too many things going on and we are not encouraged, at least in the part of the world I live in, to rest during the day. In fact, if you don’t work at least 8 hours a day, you’re pretty much considered lazy.

Now, I don’t work 8 hours a day. I work between four and five hours, depending on how I feel. My boss is really understanding and I have a completely flexible schedule. My official hours are 0900 – 1400 Monday to Thursday. 20 hours a week.

But sometimes I don’t get in until 1000 and still only work until 1400. So long as I keep a record of what hours I’m working and how many I owe, my boss doesn’t care when I make them up. I have a spreadsheet that I’ve shared with her so she can see how I am doing.

The fatigue really hits me first thing in the morning. Have you ever woken up from a really good sleep and are still exhausted? I don’t mean tired as you wake up, I mean so exhausted you can barely walk across your bedroom floor? That’s how I wake up some days. A lot of days, actually.

Adam being 14 helps. He is, however, also still autistic, of course, and likes to have a countdown before he dresses and leaves for school. If I seriously can’t get out of bed, Simon can often go in a bit late. And if he can’t, I get up as far as the sofa and as soon as Adam is out the door I am back in bed.

And maybe another four or five hours of sleep allow me to at least work from home. And I’ve added things to make that easier. I have a bed lap tray so I can work from bed. And I have a sofa C table, where the bottom goes under the sofa so I can sit on the sofa against pillows and work.

Sometimes the fatigue hits around dinner time. Especially if I’ve been busy at work and then come home and cook at some point. I will sometimes, fairly often sometimes, excuse myself from dinner to lie down, either on the sofa or I go straight to bed.

The pain, even the weird ones, I am, mostly, used to. I’ve been in pain constantly for about 16 years. (*snerk*. I just typoed 167 years. That’s closer to the truth. :D). It’s gotten to the point where if I’m not in pain, I really feel weird.

But the fatigue? The fatigue is killing me. There is tired. And then there is fatigue.

And fatigue sucks.