Bright In Small Doses

Photo by pilipala9

Photo by pilipala9

On Tuesday evening I attended a small meet up of local folks who use Twitter.  There were 9 of us in all, most meeting each other for the first time.

It was good to be and doing something different and I enjoyed myself very much.  I hope to meet up with them (and probably more new people) again in the future.

Deciding whether to attend or not was really difficult.  When you have ME it’s not always just a case of deciding if you want to and if you have the time.  Desire and time are things I have plenty of – it’s the ability to exert myself without making myself ill that’s the problem.

I was out with Growler for a few hours.  First we had a meal out (lovely!) and then onto the pub to meet the others for just under an hour and a half.  I felt myself zoning out after an hour and was starting to fade so we left ahead of almost everyone else.

I do worry how people see me in terms of representing an illness that stays hidden at home a lot of the time.  I find myself buoyed up with nervous anticipation and enjoying meeting interesting people. 

Enthusiasm carries me along well – but I do falter when people ask me direct questions.  It takes me notable extra seconds to literally search my memory banks for an answer & consider how/if to mediate a response especially if illness is a factor in the answer. Do they want to hear the details, or broad brushstrokes of how being ill effects how long it takes me to paint a canvas, or do I give a broader answer without highlighting illness?  When he asked “is it tough?” did he mean painting in general, or painting with my illness, or my life as a whole?

As I get to know people better I can often guage such things better and so not take as long to do the mental gymnastics.  But it does make me sad that they get to know me as the person whose mind goes blank and ummms a lot.  They meet the Rachel who isn’t very sharp and don’t know that I’m not as sharp as I used to be because they only know me now. 


Vacant by RachelCreative

Then after an hour I am fading and looking blank as even the muscles for my smile are numb.  I’m too tired to observe if anyone has sensed a change or just thinks I am always like that (vacant, rude, gormless – I don’t  know what they think). 

If they do see the change is it possible they recognise it’s the illness?  Or is the concept so alien it doesn’t factor?  I can (just about) remember being healthy and I took people as they came.  Take me at face value without factoring that ME is silently dulling me and I may not come across as the caring intelligent person I really am on the inside.

It leads me to another question – am I denying the part of me that is me with ME?  After me dulled with ME in a social situation IS a part of who I am now.  If I am vacant and absent and forgetful in public then in a way that is showing a true part of myself.

I start the evening well and bright because I manage my condition as carefully as I can.  I manage it so that I am able to be there in the first place.  If the exertion and stimulation melt my brain and body into submission then is that not just another aspect of me?  I am not just the bright woman I am at rest on my own sofa without physical interaction?

That’s a bitter pill to swallow.  I’m pretty sure Growler will say “never make assumptions”.  That I notice the dulled down, vacant me much more than anyone else.  Maybe.

In one sense I’d like those lovely people I met to understand that a few hours out one evening takes much more than that out of my week. 

I curbed a lot of activity the day before and the day of the meet in order to be as well as I could be on the night.  I got home and my brain was buzzing with the evenings conversation and characters like electricity pulsing through my mind.  It took a good hour for me to calm my mind enough to settle down to sleep.  Meanwhile my body was crushingly exhausted.  The next morning I  woke early still with my mind buzzing having not had enough sleep and feeling hungover from the dose of amitriptyline I had to take late the night before because I was wanting to be able to chat and not be totally spaced out before I even got to the pub.

That day after the meet all I managed to do was use my computer and watch TV.  My mind and body were slow.  The next day and I feel the same.  The plans I had for this week have had to be postponed until I have recovered some more from the outing.  I’m not bedridden, but I am slow and ill so need to avoid adding any further malaise to what I already have.  I was supposed to have a Growler assisted bath last night but it was too much for me.  No bath, no art, no cleaning and a dulled mind with forgetfulness (more than usual), a misbehaving tummy (which was much better until this), being on the cusp of my headache threshold – all for a few hours out one evening.

But I also know that this knowledge could leave those folks feeling awful.  Asking someone to do something for an hour that will leave them feeling ill and unable to even wash for a couple of days seems unfair.  They end up feeling uncomfortable knowing the cost or saying “if you’re tired/ill you don’t have to come you know” not understanding that I’m always tired/ill.

I want them to understand but I don’t want to burden anyone with something they can do little about.  Is it fair to share the suffering?  I suppose the one thing that can be offered is understanding.  Share in the knowledge, the reality and understand what effect things have on people with ME without feeling the need to find a fix or a cure. Yes to understand, or want to understand.

Photo by Tomas Hawk

Photo by Tomas Hawk

For me it’s positive to be out and connecting with people about anything except illness.  As someone who is mainly housebound and incapacitatedin many ways it’s difficult not to feel like an outsider.  Common experience is limited.  Even talking to people who live in the same city as me I can’t share much because all I see is my own house and not the outside world.  But it does give me a way to connect to that outside world and some of the people in it.

I am happy to celebrate that I am able to go and have one good hour.  I can remember a time when that would not have been possible and holding a conversation longer than a few minutes felt impossible, let alone with a bunch of strangers in a noisy pub.  So I’m thankful of what I do have but with an eye on what’s still left to gain.


5 Responses to “Bright In Small Doses”

  1. 1 ashysheela March 12, 2009 at 1:14 pm

    Reading this and it’s similarities to my own experience of going out last week makes me realise just how far there is still to go before these occasional social outings are easy for us. It also highlights to me and makes clearer my own suspicions of how huge a barrier to integration with society our illness and the strange “lifestyle” it enforces really are…

    Even if technically “able” to go, we have to decide for ourselves how much we will gain from doing this kind of thing and wiegh that up with the difficulties and impact this has on our usual routines, levels of wellbeing and quality of life in the days afterwards (and beforehand while resting ready to go). A good experience is worth so much in my view, but every time we do something we are taking a huge gamble and it doesn’t always pay off! I am glad you had a good time but sorry you are paying for it now.

    Rest up and well done for putting yourself out there!

  2. 2 Nina March 12, 2009 at 2:43 pm

    You went and enjoyed yourself! Now, when you twitter those folks you will know what they look like and a bit of who they are:-)

    I don’t think anyone not in our shoes can understand or want to. So, I go w the flip comment/broad brushstroke idea. I try to do it w a smile…….it does not help anything to make others uncomfortable.

    Besides, our big secret is that we were sharper than your average bear before which means what seems like a slow response to us is normal to others!!!!! 🙂

  3. 3 Sue March 12, 2009 at 8:19 pm

    Good to hear you were able to enjoy an evening out. I know just what you mean about all your questions of how much to say, how much to tell people, etc. I’ve agonized over all of those questions myself. You want people to understand, but you don’t want to make them feel uncomfortable. I tend to err on the open side, partly for myself and partly to help people understand more about CFS/ME.

    And I really related to your description of trying to get to sleep after an hour-long social event. I belong to an evening book group, and I’ve learned I have to take an Ambien after a meeting or I’m half awake all night long. How sad is that when a book group is too stimulating??

    I hope it doesn’t take too long for you to recover.


  4. 4 Connie March 13, 2009 at 2:01 am

    I can so relate. I just went through this yesterday. I am concerned about my daughter’s wedding day. But worrying will make me stressed and then make me sick… It is a vicious cycle.

  5. 5 rachelcreative March 13, 2009 at 9:02 am

    It is rather nice to feel connected with some new people and to break from the 4-walls routine.

    It did occur to me that some were drinking so similar reaction speed to me! And most of the others had been at work all day and were probably a bit frazzled too.

    I suppose I go with a combo of the truth (but not the whole brutal laid bare truth), light brushstrokes with a smile and glossing over things – depending on who I’m talking to, the situation and how I feel.

    One thing I have found since getting really ill with ME is that my self censoring is not what it used to be. So often I am brutally honest in a response (about all sorts of things) before my brain has caught up and wondered if I should have censored that a bit!

    A book club would be too much stimulation for me!

    As for Connie and your daughter’s wedding – plan as much as you can (especially your own strategy for what you need to do on the day) and then decide to relax and go with the flow a few days before. Things WILL go wrong so just go with it. At my own wedding I was so happy it was like I got a day off being ill. The love and cheer carried me through the day. The weeks afterwards were not so good health wise – but on the day the spirit of the wedding helped me along.

    Your daughter doesn’t get married every day so remember the primary aim is to enjoy and celebrate (even if that’s from a chair or you need to excuse yourself for a rest or two).

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