Life or Sleep?

One of the hardest things abut having a chronic illness is the need to limit the amount of social events that I attend.  Having a busy weekend with a couple of nights out and days spent with friends or traipsing around the shops are a distant memory.  Instead, I have to weigh up the pros and cons of any invitation:

How many spoons is it going to use up?

Is it going to impact on the amount of sleep that I will get?

What have I got planned for the next day?

Will it mean I end up making more work for myself because I need to rearrange something?

Am I out later that day? 

Making plans is a balancing act; if I do too much it means that I will spend the next few days/weeks recovering.  Holidays are both looked forward to with excitement and viewed with trepidation – the expectation of long days out along with symptom-inducing warm weather is enough for me to think that I will spend the whole time suffering.

Scales
Weighing up pros and cons

I hate the idea that friends and family may feel that I am not bothered anymore; that I would rather stay in than go out with them.  That couldn’t be further from the truth.  The reality is that I would love to go, but it is a toss up:  either have a great time out and then not function the next day (which then impacts upon others, such as having no energy for the kids) or stay in whilst everyone else is having a great time, therefore missing out on fun.

We have a busy one this weekend; a BBQ tonight, a wedding tomorrow and then a festival on Sunday.  I know that I have bitten off more than I can chew, but I also want to do all of these things.  So what can I do?  I have to pace myself – we’re having an early BBQ so that I can then go to bed when the kids do.  I might leave the wedding celebrations a bit earlier than my family to ensure that I get a good night’s sleep.  And I will need to prepare and organise myself in advance for the festival, ensuring that we have all the bits and pieces we need near us, avoiding the need to hobble wander around too much.

It is very easy to just stay at home – it is warm, cosy, I don’t need to change out of my comfies.  But it also makes me feel like I am missing out; that the world is going on around me whilst I just sit back and watch, thinking about the life that I used to have.  So I think that it is important for me to make myself go; to make myself socialise even if I really don’t feel physically up to it.  I am lucky in that I my friends and family usually understand.  Whereas in the past we may have had elaborate dinner parties, now we have others round for a takeaway and movie night.  I have also tried to stop stressing about the house, trying to get it in a fit state for visitors.  Instead, I will tidy the main areas and shut the doors of the rest of the house.  To be honest, anything that stops me stressing out about the house is a good thing, at least in my husband’s eyes!

Words can’t explain how jealous I am of other people; living the kind of carefree life that I once did.  I wish I appreciated it when I had it and I wish that my need for planning didn’t impact so much on Hubs and the kids.  But life is what it is, and I guess that I just need to get on with it.

For those of you going through the same – how do you manage to keep everything balanced, ensuring that you don’t make yourself even more poorly by doing to much?

Jen 2

 

0 Comments

  1. Great question. Finding that balance seems almost impossible as things are different day to day. Sometimes even changing within the day. You may feel like ok I’m doing pretty good today. I can do this and hours later it all changes. For me I just try to make sure I am around people that know it can change at any time.

  2. It really comes down to good communication. Even if the other person doesn’t understand, which they probably won’t, we have to do our part in being truthful. It is hard, especially when we want to keep as much independence as possible and not seen a burden. I’m learning a little bit more more every day that to be good to myself may not be understood by others.

  3. I am having panic attacks but not like “I can breath a bit harder than usual and got afraid” attacks. I start vomiting and it ends up in an emergency because once it started it keeps going till I got a seizure. It happened in 3 weddings, 4 vacations, countless car rides, countless 1 glass of alcohol nights. I just force myself to go outside. Constant fear is a usual friend of mine but somehow I find that power in me when I heal a bit after an attack. I have to believe I can manage that day otherwise I would have no chance.

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