Who I Am Now, Who I Was Then

After my mother-in-law and sister-in-law were asking some questions about how I am and how my illness impacts on my life it made me realise that I still measure who I am against who I was.

My definition of who I am is a reduced version of who I was, like before but not so active.  But I still measure how I feel now against a benchmark of where I want to be, which is based on where I was before.

Maybe this is too confusing for the ME brain ;o)

See I realise I am still hoping to recover to 75% or more of where I was before I got ill.  And that I expect that to happen within the next 12-18 months.  That would be within 4 years of being ill.  This is not an expectation which is at the forefront of my mind – it’s something quiet and buried deep down.

On the one hand I am pleased I maintain the hope. On the other I wonder if I don’t recover to this expectation will I go through another level of grieving.  I think it’s a case of dealing with whatever the outcome is when it happens. 

But it’s the first time I’ve realised I am still holding on to that initial picture I was given that “most people with CFS recover within 4 years”.  The evidence for that statement is flawed yet I hold on to the hope.

I also realised that I do not fully embrace who I am right now because I still measure against who I was before my illness and, in turn, who I want to be again.  Or rather the level of physical function and health I was before.  I’ve surely moved on as a person in these 2 plus years.

So I wondered – is it a problem that I do not define myself in the now, for who I am now, for what I am capable of now?  And I don’t think it is a problem. 

I’ve read plenty of advice that says you must accept but you must maintain hope. 

I think I do accept, mostly accept, but I do have times when it all hits me again like a blow to the stomach.  Like when last night I was so tired but needed to clean stuff up (womens things and not something I can ask for help with from my husband) and just a few minutes later I was utterly exhausted and in pain.  I could have sobbed I felt so helpless and crushed by this illness.  Fooled into thinking I was a little better and then stripped back to pain and headache and exhaustion from a few minutes at the wash basin.

I can see that not fully accepting and embracing my current level of capacity makes for these moments of shock and upset when I realise I am unable to do the things I always want or need to.

BUT wouldn’t accepting these current limits as who I now am make it incredibly difficult to do more when my health improves?  Maybe it is a better way – that I would wake up one day in 6 months time and discover I can go for a walk to the corner, I can stand and wash up the dishes, I can spend a few horus reading a book without it making me ill.  To see a bigger increase in health rather than the drip drip increase (often two steps forward one step back) approach I have now.  This is all assuming that I will continue to improve of course.

But what struck me is that most people are defined not just by who they are now but by who they have been.  A healthy adult is not just the job he does and the activities he does now – he is also the person who played football at 11 years old, studied for his exams as a teenager, went out to rock concerts in his 20’s. 

We don’t ordinarily ditch the parts that made up who we once were – so why should we do that as chronically ill or disabled people? 

Why must I let go of being the woman who would always step up to help with the physical work, to re-decorate the house, to paint a canvas with intense energy, to cycle and walk for miles without thinking about it. The woman who read into the small hours of the morning rather than put the book down, to attack the gardening with shears and power tools, to work extra hours, solve problems and explain complex ideas simply.  Who would chat for hours to friends on the phone, to listen and to be there when a friend was needed. The girl who had dreams and believed she can charm the wind and talk to dogs and was as alive in her imagination as in the real world.  Who wrote stories and wanted to drive trucks and thought boys toys were better than dolls.  These things are still within me and part of me.  I’m not going to deny them. I’m not going to shut them away.

What we need is not a new beginning as a person with a chronic illness.  We need to learn how to live fulfilled and happy lives within the limits we have and still be alive, in our hearts, with all the things that have made us who we are. 

To balance the life we dreamt of with the life we have.  Because everyone has to do that – ill, disabled or not.

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4 Responses to “Who I Am Now, Who I Was Then”


  1. 1 ashysheela September 2, 2008 at 6:35 pm

    ahh yes, my favourite, the old hope/acceptance quandry! I feel this is such an important issue… how to understand our own illness between the unknown of the future and the person we once were (and deciding which changes due to illness to adopt as part of our “true identity”). I have been advised not to keep comparing myself to how and who i was before, but if we don’t hold onto that person to some extent then who are we now? As you say, well people are not asked to forget their personal histories… Also we are always being asked how we feel, how bad we feel etc supposedly compared to what was “normal” so they can’t have it both ways! As a woman of 31 i am so different to who i was at 22 when i became ill, but that would be the case anyway, and i am very pleased about that, but i also hold on to things in my personality and preferences, and to the experiences that have contributed to who i feel i am.

    I think you deal with your illness and cope incredibly well, and i often forget that you have not been ill for very long (i mean compared to me, sure it feels like an eternity!). I still fall into grief unexpectedly, it comes around in cycles, however much i think i should have accepted it by now.

    One sentence you wrote stood out for me:

    “BUT wouldn’t accepting these current limits as who I now am make it incredibly difficult to do more when my health improves?”

    i really don’t think so… i think there is a really problematic notion peddled that we just get used to being ill and doing so little but i really think (and know from when i have good days) that i have no problem doing more when i genuinely feel well. Yes, i think i would find it completely wierd and surreal to jump into high octane public life and to trust my body to perform, and that i could deal with the stress of it, but those are all things that people learn and get used to, and that is not quite the same thing. I think you would soon accept the joys of a more active life! I think the word “now” is key in your sentence. It is almost impossible to totally accept our limitations in this situation, but i think we would soon adapt to the chains of captivity being loosened…

    Anyway, i love the concluding two paragraphs and think you are spot on!

  2. 2 Connie September 4, 2008 at 3:48 am

    We go through periods of change in our lives due to different things, age, marriage, loss, pregnancy, etc. But when change happens with our whole bodies and without our approval (LOL) it is so hard to cope.

    There are phases that I go through as someone with multiple chronic illnesses. I feel OK about it, then feel a pulling toward the past, a fear of the future, etc.

    It is good to have hope! Don’t let anyone take that from you. I wish the best on your journey!

  3. 3 Matthew September 5, 2008 at 8:54 pm

    Some insightful points. You seem to articulate very clearly what I (and i suspect many others) struggle to put over about M.E. Have you thought about writing for the Action for M.E. magazine?

    I know what you mean about this balancing act. I don’t think it’s possible to deal with it perfectly. Accepting the massive difference between what we were capable of doing and the ‘now’ and somehow accepting that as one self can be hard. I am still the active person I was.. only I’m not, and yet I am (circular thinking meltdown imminent)!

  4. 4 Linda September 10, 2008 at 9:55 pm

    I’ve spent the last two years trying to catch the old me again. But was that really “me?” I was running around crazy trying to do everything for everybody, and I think I got lost. Now, with everything stripped down to nothing, I’m faced with finding out who I really am and what is really important to me. Because I don’t have time for anything else. It’s not the “things” I did that made me who I am, but the reason why I did those things in the first place.


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