Today has been a weird day.

I slept in late because I have what the spoonie community calls painsomnia — meaning that the pain we are feeling is harsh and causing us not to be able to sleep well.

It also doesn’t help when my fibro brain wont shut down for the night I have  at best 4 hours of sleep at night, if I am able to fall to sleep at night at all. I normally do not get any rest until around 7 am … an hour after I have had my morning meds, why my doctor insists that I take them in the A.M. instead of the P.M. still alludes me… one would think that since these pills make me drowsy that it would stand to reason that the best course of action would be for me to take these pills at night so that maybe – just maybe I could get some rest while the moon is out — like a normal person would, but nope … not my doctor.   I also am only getting about 3 to 5 hours of sleep in the morning so my fibro brain feels like Jello.

I fell asleep around 7:30 A.M. and was stirred from my happy place around 9 A.M. by two maintenance men asking about the leak in my tub that didn’t exist… wrong apartment. Did I mention that #1 I was asleep, in very little clothing #2 they were just standing in the hallway while I was sleeping and that it startled me that they were in the house without being invited … I had the slide lock on so I have no earthly clue how the hell they gained entrance in the first place (other than the fact that they pushed the door open braking said lock in the process, thank goodness for my hubby – who promptly fixed the damn thing) #3 only when I jumped {and yelped ( like a 3 year old staring at a bug) because when I fell asleep I knew I was home alone and I was awakened because I heard a noise and TA-DAH!  I have 2 new house guests}  was when they announced they were there to fix a tub that wasn’t broken.

Needless to say today, I would have only had 1 1/2 hours sleep since I was nervous to fall back to sleep because I didn’t know who I’d wake up to next …perhaps the butcher, the baker, or the candlestick maker? (rub a dub dub)

I ended up having to take a sleeping aide and thankfully slept till 2 pm today.

Sometimes spoonies have a very hard time sleeping at night… this vampire like hell can sometimes leave us feeling isolated, lonely, helpless, and ultimately useless. We just know at some point we will crash and than the wash wont get done, the cooking will have to be done by someone who worked all day or perhaps we will have to miss yet another school event.  We feel lonely and isolated because the house is asleep and we are wide awake. This can cause use to irrationally be angry at our spouse or significant others  because they have no problem  falling sleep and even though it shouldn’t bother us, it does.

The best thing to do is … let your spoonie know you understand and that you appreciate the things we ARE able to do when we are able to do them. On days when you ( our dish counter parts) are off from work, on vacation from work, or even just taking a hooky day from work, perhaps think about changing your sleep pattern to mirror ours. We miss snuggling, we miss the feel of your arms intertwined with ours, the rise and fall of your chest as we drift off to sleep. We miss the chats we have with you while our bodies settle down for slumber. We miss the gentle ( and sometimes not so gentle) breaths you make while you sleep. We miss being held as we fall to sleep. We miss being able to say good morning (errr… afternoon in some cases) honey, how did you sleep. We miss waking up nice and warm and feeling engulfed in your love, affection, and tender embraces.

I guess what I am saying is, it’s hard to love a spoonie because you don’t really understand how it feels to be one of us. It can be frustrating to watch us suffer and infuriating to catch the back lash when we get frustrated ourselves. Sometimes both sides forget that the we both have issues to adjust to with these illnesses. Spoonies try so hard to run and catch up to the life we feel we are loosing our grips on that we sometimes forget to slow down so we don’t get sicker.  We start to feel useless because we love our families and it’s difficult when we can’t give as much energy and time  to the lives we share. Something as simple as taking a hooky day from work to just snuggle , or using a vacation day to just be there for us is all it takes to give us the strength to keep going.

We thank’s again for taking a peek inside this spoonie’s makeup bag. Until next time spoonie darling and dish dears, and remember spoonie darlings ,