I guess we’ve all come to this point sometime on our journey.
I’m still off work, was reviewed yesterday and probably may start back to work in about a months time. My doctor has said it will only be for a few hours twice a week to begin with. I’m much better than I was at the beginning of this flare, am now able to sit up for five hours a day and each day I drive to the local mall and do a circuit of the top floor in order that I actually do some walking to build up my muscle stregth again. I was reducing my pain meds but after an increase of pain the doctor has put me back up to what I was on. I’m not castigating myself as I could do, but rather saying well done you. You have gone from being bedridden to sitting up for five hours you have gone from being economical with any walking to being able to do the mall circuit every day.
I am however tired of being tired and sick of being sick. It’s interesting how we can cut other slack for being unwell but we are impatient with ourselves. Interesting too if someone told us they felt like they had climbed a mountain and were sore we would tell them take a hot bath and go to bed, but do we heed our own advice…often we don’t.
I’m many ways I can see I am my own worst critic and hardest task master.
I have read here from others about what this illness has stolen from them. It is true for me too. I have to constantly be mindful of routine as that. Must. Come first before any social outings and sometimes I make arrangements to do something and have to cancel. Here people would be tolerant of that but sometimes I know when I cancel out people are pissed off with me. I don’t know how you get past that. I will say when their tone changes you seem Dissappointed, but others are not always honest with how they feel when I cancel. Then after a while I notice the phone calls drop off and they no longer ask me out. I’m now used to this and it doesn’t hurt like it once did. I’ve learned to say maybe instead of yes and suggest they may like to invite others incase I can’t make it on the day. I’ve stopped telling them how this illness works for me. Many new friends don’t even know I have it but think I’m a busy woman and will get there if I am able to. That’s not totally a lie, I will get there if Im able to.
I agree we do not heed our own advice. You seem to be coping very well with this. I do tell my friends that I have lupus and fibro and explain that I can not always make it to things with them I figure they will understand or decide not to invite me. which is fine with me .
Well said Lindy-Loo. I am always telling those who are close that I am really sick and tired of being sick and tired…Ha. But I have decided to try my best to have a better attitude about social events. I figured that I might be better off if they don’t invite me because I almost always have to cancel. I hate even keeping doctor appointments because it is so much energy that I don’t usually have.
We definitely have to take our own advise…must say that I don’t either but trying to get better with that. If we can tolerate others and understand their needs why can’t we do it for ourselves? Seems like a contradiction huh?
Be good to yourself and I hope tomorrow will be better for us all.
Kudos for making it through a major flare! That's so hard to do, and you did it! I'm so proud of you for doing what you needed to do medically instead of ignoring it. For me, there is a time of fatigue, letdown, and a bit of depression right after a flare is conquered. I think of it as a warrior who has just come out of battle. We need to recuperate from the battle, in mind, body and spirit.
I, too, am my worst critic. I can also relate to the difficulty in cancelling social situations. I have learned to say something like, "I really wish I could go, but my body won't let me - it's a fibro thing." More and more people have at least heard of fibro, but by saying my body won't let me, it avoids misunderstandings. I usually say something like "Let's try again another time" so they know I'm not totally disinterested. This seems to work with most people. I also tell them to go ahead and invite me to things, and if I can go, I would love to.
My phone doesn't ring a lot either, but those who care, call. The rest of them .... oh well, let them go. :)
I hope this helps....
hi lindy xx sending warm hugs xxxx