Most of the time, my mind is alert. Inquisitive. I want to know everything. I want to know about the world around me, and in that knowing, I want to experience those things around me. I want to know it all and I want to know it now. I want to write a novel and I’m learning to do that the slow and hard way, much as everyone else has to do. I also want to branch out and try to write other novels. I want to continue to learn things, about the past, what we are capable of as humans and the geology of this wonderful planet of ours. I have a huge bucket list which I am very slowly working through and it will be slow as a lot will involve times when the children have flown the nest.
But to do the things I want to do, I have to consider everything else. The mundane and everyday situations that make up my life. My full time job that keeps me out of the house nearly eleven hours a day. The children who then want to talk to me about something they’ve been doing. Then I want to read books, finish the final edits on the first crime fiction novel I hope to send back out this month and compete in the madness that is NaNoWriMo month. All these things impact on any decisions on further activity for lifes wishlist.
I found this weekend that there are limits. For the majority of the time, I manage the fatigue of the Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome, really quite well. If you didn’t know otherwise, you wouldn’t know there was anything wrong with me. Well, not last week. After a week of extra long hours at work, and I mean long – 17 hours one day. I pushed and pushed myself to keep turning in because the job needed doing and it was my job. I did it. I did it all and I was thrilled. But now, now my body relaxed and I didn’t feel I could get up again.
Friday night I was supposed to take my little man, with my Other Half and some friends to an organised Firework display. I didn’t have the energy to move off the sofa and it wasn’t just, oh dear I’m tired, it was, if you make me, I’m going to fall on the floor and my body will weep all over your feet kind of exhaustion. I didn’t give myself too much of a hard time over this, because we had our own firework display at our house, with family and friends set for the Saturday.
So it comes down to this. Fairly disabling illness, which more times than not, I have a pretty good grip on, but if the body says no, it’s a no. Compromise with the illness and I’ve more chance of doing the important things. The event at home with friends and family and better memories and photo opportunities.
These illnesses both take from me, but if I allow some of this take, and give it my time, I save enough for myself, for the important events. Those I’m not prepared to miss.
Give and Take with an illness I can neither see, nor fight. It’s a new and adaptive way of living. It’s not easy either. It’s frustrating because the person I am is locked inside these boundaries. It can be difficult explaining to others though, just how bad it is when you look as well as you did yesterday, but you’re saying it’s now impossible to do what was possible yesterday. I do have to make some kind of peace with this though, or I will end up burnt out and living my life through anger.
Do you life with boundaries and adaptations?
(((((Hugs))))) honey.
It must be so hard 🙁
Xx
Thanks Vikki. It is sometimes. It’s not always this way x
Rebecca, I have some understanding of this. I have CFS/ME, which is also pretty much invisible. I have learned to pace myself so that I now have a reasonable degree of physical and mental functioning. But I often still push too hard (mentally and/or physically) and end up with that same ‘paralysing’ exhaustion you describe. The process of acceptance is not an easy one; I am still learning and I suspect I always will be. 😉
I only researched POTS a few weeks ago, as I had a client with the same diagnosis come to me for a session, and I needed to understand his particular limitations. You have my respect, as does anyone living with an ‘invisible illness’. As for doing NaNoWriMo, well . . . HUGE kudos to you. I really hope it goes well AND that you can feel well through it, too. Hugs here if you’d like some!
Thanks Joanna, and for the hugs!
I’m sorry you have to live with CFS/ME. Pacing yourself and making choices isn’t easy, and like you say, neither is the acceptance. Like you, I think that will be an ongoing learning curve for me. It’s not something we have a choice about though is it? We have to make the choices or we pay for it.
My POTS obviously isn’t as bad as it could be, otherwise I would never get through the work and hours that I do. I self manage with movement and sitting, pretty well. I’m both thankful for it being fairly mild, but still frustrated for its limitations!
I understand that perfectly. It’s all checks and balances and prioritising. You sound like you’re doing wonderfully well. 🙂
Rebecca – You really do face a difficult, made all the worse by the fact that it’s not visibly apparent, so explaining it can be, I’m sure, hard. Good on you to keep going and try to balance your life as best you can.
I’m sure some people just think I’m lazy Margot! That’s the problem with the “invisible” bit. I’m getting my head around the fact that I know the truth and taking care of me and my family is what is important.
Sounds as though you have your priorities right, Rebecca.
I’m sorry, Rebecca!
Listen to your body. When it says too much, just stop.
Thanks Alex and good advice! I do try and if I don’t, it flipping well tells me in a firmer manner!
I’m so sorry for you, Rebecca. I live my life in a constant flux, struggling to fit in writing around family commitments, work and hobbies. But I don’t have your problems and I feel for you. As, Alex says, listen to your body, dear friend, and rest when you can. *Sending hugs*
Thanks Jane. I think our lives nowadays are so much more hectic than they ever used to be. We all want to fit so much more in and don’t want to waste any time. I think now, for me, it’s about realising that I’m not wasting time if I’m sitting and relaxing! xx
It seems to me like you’ve got a good handle on your condition – missing one day for the sake of another is a great way to balance life.
Thanks Annalisa. It’s all about one day at a time and trying to accept the things you can’t do, in favour of those you really want to! 🙂
Hi Rebecca,
I developed an underactive thyroid after having my daughter (she’s now four) and this is also an invisible illness that, although manageable most of the time, can flare up if I’m overdoing it and cause a similar feeling of complete mental and physical exhaustion. The worst thing is the sense that other people think you’re being lazy, or making too much of it. Most people have heard of an underactive thyroid, and think – wrongly – that once you’re taking tablets it’s all fine again. But the tablets can’t replicate the subtle function of a gland that’s stopped working properly, so this condition can be debilitiating at times. I think you’re really brave, and learning to give and take with my illness is something I need to work on. Mostly I just get frustrated and angry when I’m not well, and then try to do to much when I am! 🙂 x
I completely understand those feelings of frustration and anger. It is exactly those that I am attempting to fight against and learn to live with.
I’m sorry that you also have to live with an debilitating invisible illness and you’re right, people do think you’re lazy and that is one of the things that causes my frustrations as well. Another thing we have to attempt to come to terms with is not caring about other peoples thoughts. Never easy.
I hope that Christmas preparations are not taking too much of a toll on you. x