In the past few months I have been attempting to move on
from all of last year’s Benefits misery: to try and reconnect with things I am
good at and which give me some pleasure; to try and be out in the world more
and at home or in the virtual world less.
I could foresee some of the problems this might unearth. There are others I could not have foreseen
I was asked if I’d like to help out on a sewing project for people with mental health issues at out local museum. There were four sessions and I managed to get to two. The group was made up of arts workers, museum staff, volunteers, people with mental health issues and CPNs. I wasn’t sure where I fitted in at first but, after conversation and a relaxed approach, I found that I had a lot of experiences and knowledge in common with the arts and museum workers (we had worked in the same places at different times) and everyone was very friendly.
At first I found it heartening to be part of the world where I used to feel so comfortable: talking about art, making, museum collections, history, and ways to develop projects. I could feel the old Cusp re-emerging and coming to life.
However, over time I realised that old Cusp was just that…old, gone, in the past …and the more I listened to what people were doing, where they were going, had been, had planned, the more I was reminded of what I could do long ago and the more mindful I became of how little I can achieve now. I realised that, by choice or design, I had been living in a narrowly bracketed band of energy which felt like ‘living’ but was in fact existing on the margins of what other people call ‘real life’.
I could foresee some of the problems this might unearth. There are others I could not have foreseen
I was asked if I’d like to help out on a sewing project for people with mental health issues at out local museum. There were four sessions and I managed to get to two. The group was made up of arts workers, museum staff, volunteers, people with mental health issues and CPNs. I wasn’t sure where I fitted in at first but, after conversation and a relaxed approach, I found that I had a lot of experiences and knowledge in common with the arts and museum workers (we had worked in the same places at different times) and everyone was very friendly.
At first I found it heartening to be part of the world where I used to feel so comfortable: talking about art, making, museum collections, history, and ways to develop projects. I could feel the old Cusp re-emerging and coming to life.
However, over time I realised that old Cusp was just that…old, gone, in the past …and the more I listened to what people were doing, where they were going, had been, had planned, the more I was reminded of what I could do long ago and the more mindful I became of how little I can achieve now. I realised that, by choice or design, I had been living in a narrowly bracketed band of energy which felt like ‘living’ but was in fact existing on the margins of what other people call ‘real life’.
The whole business has confused and unsettled me.
Overall the project was a success and a large part of me enjoyed contributing in some small way. The facilitator asked me if I would like to help at another group, an art group, at the seaside. It’s a 30 minute drive and something I rarely attempt alone. I was very hesitant about accepting her offer because I hate to let people down: if I say I’ve committed to a project I really commit to it…but I told her that I would attempt to be there and reiterated that, because of the bastard M.E., it might be difficult some weeks.
Sure enough, I have missed the first two sessions. At the start of the project I would have been lucky to manage a drive to my local shops, two miles away, let alone a 45 mile round trip with a 2 hour art session as well. This week, despite feeling exhausted, I made myself go. I didn’t want to let down the Project Leader and I wanted to be part of that world again.
The group is small and lovely. The other volunteer is warm and friendly and, again, I find myself unsettled and exhausted by the whole process. All the time, there are echoes of how I used to be, what I used to do, what I could achieve. All the time there are echoes of what I cannot do now: echoes and tremors of how I have no real goal now but drift along, buffeted by ill health, family responsibilities and necessities. What’s more, when I was working, I had two projects running in this seaside town for over 5 years. It was my regular ‘haunt’ and everywhere I go, I see the old me.
In addition to all these echoes, my Pensions Company have, somehow, got wind of the fact that I have done a small amount of volunteering and seem to see this as a glimmer of hope of me returning to work: wanting to know how often I attend, how long for, what I actually do there. They also got wind of an online art project I followed last year and want to know ‘ …what are my plans for a follow up and the work that was produced…’ as if I am going to launch myself at the art world with a major exhibition. The course was online, six sessions and for self-expression: my desperate attempt to find a way of expressing all the turmoil within that had been unearthed by the wretched ESA assessment.
Everywhere I turn it seems I am reminded of how much other people can do, how quickly, how organised they can be and how everything seems to take three times as long for me and drags on and on as I try to complete a task.
If I speak to people about my misgivings, (i.e. people in good health) they say ‘Don’t look back, look forward’….but to what ? What am I looking at ?
Will I give up volunteering ? No. For all the difficulties and rumblings, I enjoy it too much and there is a glimpse of what it feels like to be useful and recognised as me rather than as a role in someone else’s life but I still have to find a way of resolving all these unsettled rumblings.
Was the ESA assessment that I was ‘fit for work’ correct ? No…not if these experiences are anything to go by. This is hard enough. The idea of being expected to turn up to a place of employment on a regular basis, at a specific time for a specific number of hours is ridiculous when applied to me.
I’m not sure I’m fit for anything
Overall the project was a success and a large part of me enjoyed contributing in some small way. The facilitator asked me if I would like to help at another group, an art group, at the seaside. It’s a 30 minute drive and something I rarely attempt alone. I was very hesitant about accepting her offer because I hate to let people down: if I say I’ve committed to a project I really commit to it…but I told her that I would attempt to be there and reiterated that, because of the bastard M.E., it might be difficult some weeks.
Sure enough, I have missed the first two sessions. At the start of the project I would have been lucky to manage a drive to my local shops, two miles away, let alone a 45 mile round trip with a 2 hour art session as well. This week, despite feeling exhausted, I made myself go. I didn’t want to let down the Project Leader and I wanted to be part of that world again.
The group is small and lovely. The other volunteer is warm and friendly and, again, I find myself unsettled and exhausted by the whole process. All the time, there are echoes of how I used to be, what I used to do, what I could achieve. All the time there are echoes of what I cannot do now: echoes and tremors of how I have no real goal now but drift along, buffeted by ill health, family responsibilities and necessities. What’s more, when I was working, I had two projects running in this seaside town for over 5 years. It was my regular ‘haunt’ and everywhere I go, I see the old me.
In addition to all these echoes, my Pensions Company have, somehow, got wind of the fact that I have done a small amount of volunteering and seem to see this as a glimmer of hope of me returning to work: wanting to know how often I attend, how long for, what I actually do there. They also got wind of an online art project I followed last year and want to know ‘ …what are my plans for a follow up and the work that was produced…’ as if I am going to launch myself at the art world with a major exhibition. The course was online, six sessions and for self-expression: my desperate attempt to find a way of expressing all the turmoil within that had been unearthed by the wretched ESA assessment.
Everywhere I turn it seems I am reminded of how much other people can do, how quickly, how organised they can be and how everything seems to take three times as long for me and drags on and on as I try to complete a task.
If I speak to people about my misgivings, (i.e. people in good health) they say ‘Don’t look back, look forward’….but to what ? What am I looking at ?
Will I give up volunteering ? No. For all the difficulties and rumblings, I enjoy it too much and there is a glimpse of what it feels like to be useful and recognised as me rather than as a role in someone else’s life but I still have to find a way of resolving all these unsettled rumblings.
Was the ESA assessment that I was ‘fit for work’ correct ? No…not if these experiences are anything to go by. This is hard enough. The idea of being expected to turn up to a place of employment on a regular basis, at a specific time for a specific number of hours is ridiculous when applied to me.
I’m not sure I’m fit for anything
9 comments:
ugh! I have such mixed feeling just reading this, I can't imagine just how confused you must be by it all. I totally understand that sense of loss that comes with re-connecting with something that USED to be part of how u identified yourself. You still have the desire and can still achieve but when you stand side by side with a 'well' contemporary ... you see just how short you fall (at least in your own mind). I think the key is to find a way to not compare yourself to others or to the old version of you ... sounds impossible doesnt it? I know!!
From my perspective I see you as someone very talented and capable .. and if there were a way for you to step out from the confines you's achieve mountains ....
You still have plenty of time, don't give up!! xo
Argh, this is heartbreaking. I'm trying not to leap in with advice but I'm wondering if you could start your own group somewhere you can easily get to. User led groups are all the rage and you may be able to get some funding even. Re, the pension people - remind them you are doing it for therapy (even if you're not). Also I'm wondering if you can reapply for ESA at some point if you can face it of course. Like Lee Lee says, you are a woman of many talents and I feel sure you can reinvent a new and different Cusp. It's a terrible loss you have faced but you are still wonderful. xxx
Oh, Cusp, I totally understand about the mixed feelings and feeling torn. I have been going through some similar internal turmoil over my upcoming college reunion, as I wrote in my last blog post.
But I think it is fabulous that you got out and did these volunteer projects!! Really, I am so impressed. I know what it takes to get out and do something like that and be with "normals." That in itself is a huge victory and you should rejoice in it - good for you!!
Thinking of you...
Sue
Book By Book
Live with CFS
Oh Cuspy it's impossible isn't it? We aren't who we were, but we're not who we will be either. We're stuck in never-never land.
I always find that grief follows small achievements/outings/stretches of myself. Because there's this realisation of loss ... that it is not what it was before and yet we are not settled into a now either because every day is different, transient, changing, worsening, improving - ever moving parameters and gold posts.
Our sense of self is hard to resolve when we are in constant flux.
And living in the moment is so hard when you are ill, because there is this barrier of pain, exhaustion and intense concentration required to maintain the illusion of being engaged - that too keeps us separate and confuses our perception.
I have no useful advice. All I can say is that I am glad that you ventured out. That you tried and continue to try. That's courageous. It's huge.
Thanks for being you.
Big love xxxx
Cusp,
Can so relate to this post. About a month ago my brother asked me to read over a business plan he had put together for a new venture. The first time I tried to look at it, a blur of words, that made no sense. This week I had another go, and to my joy I found I could be constructive and step into the old me, savvy in the business world.
I helped, and it felt good. Could I go back to it full time. No. Exhausted, yes. But for a couple of hours I was useful to someone. It's so hard balancing, I mourn daily the loss of me, and wish I could let her go, but I can't. Time I guess,
May I tell you I enjoy the posts you share via facebook, the photos etc and I look forward to them daily. Thank you for sharing your amazing humour and knowledge, Kellie
Oh Cusp, I too can relate to this. I was asked to develop a colour palette and design for a new school, mostly starting with a uniform. So far it is reminding me how much energy it takes and how limited I am now. It isn't enjoyable for me because of those feelings.I would normally put in 100% and then some. I am glad you did get some pleasure out of it and hopefully will continue to.
Thinking of you
Mel xxx
I read this a few days ago now and haven't been able to work out what to say. Because it hits so close to home Cusp. It's as though other people expect when we can participate in activity that we're somehow back to how we used to be. It feels to me more and more like 'the real world' is a place inhabited by healthy people. That even when we visit there we're somehow still never really a part of it. It's that not being able to fully enjoy and the price we pay for what we can push ourselves to do that is so hard to explain to anyone. Anyone except people like you who know only too well. And I wish so badly that you didn't.
Thankyou for writing this. XXOO
The bittersweet experience of being able to dip a toe back into the ocean of your 'past life' only to feel like you're now trapped in a pond.
Like you, I love volunteering when I'm able to. I share you fear of letting people down and its so tough to balance the desire to do stuff that you want to do with the reality of simply not always being able to.
I wish I had some words of wisdom...I just wanted to express some empathy.
ah, such a familiair story...it seems like we can never win this battle, no matter how hard we try. Others not affected by M.E. and especially the bureaucrats and
and the so called health professionals will never understand our lives. The only thing we can do is believe in ourselves, in our own abilities, in all we love. As hard as we can.
thinking of you.
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