Over the past few weeks I keep being brought up against my past. It's a past I don't like to dwell on; a past I've learnt to brush aside because it's too painful now. It's a past where I had a job, money, work colleagues, respect, loyalty, appreciation and felt a part of the world. It's a past doing a job I loved (most of the time), that I'd worked very hard to get and worked very hard to stay in.
First there was the job in the local paper --- a Development Worker for a project that I initiated seven years ago and working with someone who used to phone me for ideas and inspiration (this sounds big-headed but it's true). It was a project very close to my heart for personal as well as professional reasons. I'd love to do that job, love to apply. I even fantasised that I would. 'It's only 18 hours a week....I could manage that....'
Who am I kidding ? The last few weeks with the kids at home 24/7 has been a nightmare in terms of energy. I love my kids more than my own life. I fought hard to have them too but this bloody condition makes even enjoying time with them hard sometimes. Going back to work would be a breeze in comparison except that where I write 'breeze' I should write 'Force 3 hurricane' because the holidays have been Force 5 and you can't stand up in one of those and I can barely stand up now.
The second jog was going to the seaside at the weekend. We drove down and past where I had a beach hut ---given up 6 months after I got ill because I could no longer afford the ground rent and anyway at that point I couldn't even get out of bed, let alone go to the bloody beach. Even now it's nigh on impossible to get there because it crackers me. We drove past where I used to work every Monday afternoon (sessional work) and to a cafe we went to all the time and past a place where I made a film for TV in 1999. I could see myself...blundering through my peaks and troughs of energy even then, never letting on and determined not to be beaten by my health. Even then I was more ill then I realised or anyone else knew. All of that is gone. I cannot fight the bloody illness anymore in that way. I can't pull out reserves because there are none -- only the meagre wisps of energy that float about in my body like mare tail clouds on a sunny day; except none of this is sunny.
Jogs and bad luck always come in threes and the third came today. On Saturday, we're all meant to go to a big party for an old friend who I used to work with. God knows she has had her own health problems for the last year and I haven't actually seen her face to face for 6 years. I'm praying I can get there and I can't stand the idea of disappointing her because she's told me several times how much she's looking forward to us being together. When we both worked (she's taken early retirement now on health grounds) we cooked up all sorts of jolly things and made each other laugh and laugh. It wasn't like work but like a jolly day out. That's gone too. Then this afternoon after the friend had send a round-robin e mail with directions for Saturday I got a surprise e mail from another old work colleague who I haven't heard from since I first left work nearly 7 years ago. It was a really sweet message asking how I was and saying she is looking forward to seeing me too. She had moved miles away so that is why I have not heard from her but it also reminded me of all the other work colleagues who were, apparently so close to me and with whom I worked so closely (and socialised) and who seemed to vapourise about 2 months after I got ill. Suddenly they were too busy and I wasn't even able to talk properly at that point.
You can see I'm in a dip. I've had to work hard, over the past 4 years especially, to forget the hurt of 'friends' disappearing, the pain of having to leave a job I loved, of starting and then having to abandon things I'd started, to try to ignore avenueswhich call to me because I know I have the mental and emotional capacity to achieve them but not the physical strength or stamina. This condition can be like being in a straightjacket. I've had to learn to appreciate what I do have , appreciate the small things and find new ways of being. I've had to learn to try and forget things I would love to do, places I'd love to go, people I'd love to see, big ambitions because it's too difficult to achieve or would compromise my ability to attend to everyday duties and responsibilities.
What I also realise now is that, for years, undiagnosed and being told I was neurotic, mistaken, deluded, lazy, not trying hard enough, I tried all the harder to be like other people. It feels and always did feel like everyone else could go faster than me and I was lagging behind. I either couldn't keep up or kept up and suffered inside.
Now, some days, most days actually, I believe I've come to terms with how things are, how I am, and what is possible and what is not and where patience and pragmatism are better options than delusion and relapse.
Some days, the reminders are too strong and I can't keep up the pretence that this compromised life is bearable. Today is one of those days and I'm straggling behind everyone else.
10 comments:
Big hugs from Liverpool.
We all do what we can at the time. No-one can do more. It's a lesson I still have to learn fully, but I do think that it's true.
My kids were older when I got ill, so it was easier in some ways.
Hope you feel better soon.
Very best wishes from the wilds of Aigburth ;-)
Sending you a massive hug (make that several massive hugs). Hope you feel better soon lots of love Mandy xxx
Dear Cusp, what can I say. I feel with you, understand completely what you're talking about. This illness gives us so many reasons to mourn, doesn't it, all the things we have had to leave behind, all the things that we have to leave every day because we just can't find the energy to do them. Everything is touched by this illness, the ability to work, to socialise, to travel, to make, to be. It changes completely how we are in the world and feel connected to it and how we feel about ourselves, doesn't it. And everything we do do just seems to take immense effort and has a trail of symptoms following right after.
While my art is what keeps me going I struggle when I see what kind of work and how much others put out when I only manage to make bits and pieces very very slowly. It's hard not to get discouraged when others have work in exhibitions or are working towards solo-shows and I lie on the floor at home and try to crochet a little something and if it wasn't for my blog hardly anybody would ever see it. Had a very black period a little while ago when I felt I just couldn't do it anymore but managed to get myself out of it again and here I am, writing my blog, linking up with other artists and bloggers of all kinds, making my work and getting feedback for it, and I try very hard to focus on that, on what I can do and not what I can't. That frustration and pain always comes back though and has to be acknowledged and then sent on its way again, until the next time. I've come to see M.E. as my present job, it is hard work and unfortunately work that is invisible and that nobody acknowledges and gives you respect for, but I just have to do it as best I can, for my sake. And the 'friends' that just fell by the wayside when we fell ill - yeah, but I don't want to mourn them, I'm still angry and anyway, somehow I've managed to gain new friends too, so there.
So, Cusp, it's o.k. to lose the plot sometimes, and to mourn and to rage and cry for oneself, in fact it's a necessity, and then you'll pick yourself up again and do what you can and enjoy it and make the most of it while you can and with the people who love you NOW. Hope you can make that party on Saturday and have a great great time.
Big hug. M.
Cusp,
Your post really touched me and I am thinking of you.
You have given up so much my friend and continue to do so. I wish you good health and energy.
Hugs
Kahless.x.
ps I always wanted a beach hut; I am sorry you had to give yours up, I think I know what it must have meant.
Oh Cusp, I am sorry to hear that you are having a rough time of it at the moment. Being constantly ill and yet still trying to maintain some kind of normality in our daily lives really tests our strength and patience. I know at times mine wears very thin indeed so I can truly understand where you are coming from.
I'm afraid that I don't have any answers for you, I really wish that I did. We can all only try our best and at times our best sometimes may seem like it's enough but that is because we compare ourselves to others who may not have the same health issues that we face.
Sometimes I find that looking at what I have achieved up to this point can help me with feeling a little better about myself and may help gain that bit of extra strength that I might be currently be lacking in. It's far from easy though and at times the mental strength that I need to think this way, I just don't have, so I fall further into a slump.
After reading your post and marjojo's comments I can really relate to what you are both are saying. marjojo says that M.E is like her job and that the work is hard and invisible and no-one acknowledges or gives you respect for it but you have to do your best for your own sake. This sentence jumped out at me. Wow, I have thought this so often! It gives me strength to know that I'm not alone and that others even though I don't know them personally are feeling exactly like I do.
This comment appears to have become a bit of a ramble that doesn't make a lot of sense but I just wanted to let you know that although I don't have a answer for you that you are most certainly not alone. There is always someone here to listen to you who understands.
I really hope Cusp that you are able to find a little bit of strength from somewhere to draw upon.
*big hugs*
Thank you, thank you for all your support (apart from Tara, whoever you are, who only wants to spam and suggest work I don't want and can't do. Clear off Tara !)
I'm really touched by your thoughts and comments. I don't often get a dip like this now, but I'm tired from the summer hols.and we are plagued at the moment by all sorts of fertilsiers on the fields which surround us. They make me feel ill and weak and so it has all kind of collapsed on top of me.
I know I am resilient and I will bounce back when I've had a little space to chill (the kids went back to school this morning).
I know what you mean about the condition being like a job but if I'm honest I really resent it when I feel ilke this. I don't want it to be my job. I want a proper job (foot stamping, crumpled face like a two year old who can't have it's own way !!! oh dear ) And then I feel guilty becasue I know there are many peope who are much worse off than me and I do have a lot to be thankful for
Oh dear, more self pity, more maudlin sentiments......I'll shut up and keep to myself til I'm more myself. Stop imposing my grumps on the world.
In any event, I do really appreciate the support and kindness you have all shown. It means a lot and I'm truly grateful to have friends like you.
Back soon with more spring in my step.
Love to y'all
Ditto other's sympathy. The awful thing about the mourning process in chronic illness is the ghosts; you don't ever get to lay what you've lost to rest because it keeps coming back and nudging you with maybes. I imagine this is actually much worse when a person got sick gradually and they had to watch that stuff slowly slip away (or perhaps fall apart).
But do remember that life isn't a race, nor a competition of any kind - that goes for coping as well; you are more than entitled to your sense of loss and frustration, regardless of what others might face.
The challenge is to get the best out of the life we happen to have been handed. Which is a million miles easier said than done, but not impossible.
Thinking of you.
You're right Goldfish. It's the ghosts and that is what has compounded other stuff really. I thought I had laid them to rest and then BHAM they spring up in front of me like a ghost train ride...just when I was beginning to feel that I was getting some sort of life again.
Anyroadup....I am getting some osrt of life again..a different life, not better or worse and in my 'old hippy' way I'm sure there's a reason for it.
I'll bob back to the surface. I always do.
Thanks for taking time to respond.
Hi Cusp,
I won't offer wise words - haven't got any to address the situation, in any case. I won't offer consolation either because sometimes it's not a question of asking someone to make you feel better, is it? It's just important to tell how it is - as you have done here - and to know you are being heard. Which you are.
Thanks Signs. As ever ---- wise words. I see this blog as a kind of journal so when I am feeling glum I tell it as it is. No it's not about expecting sympathy --- thoug it's lovely that people take the time and effort to show they care --- and it is more about being heard in a setting that feels non-judgemental and supportive
Post a Comment