I’m feeling more positive about life and about the house/housework stuff. Thanks to everyone who has been supportive, encouraging and shared their own experiences. It’s helped a lot.
It’s still all quite overwhelming if I think too big, think about too much of it it one go. But I can try. The declutter sessions will continue until hopefully it makes things easier to keep tidy and clean. My inlaws are staying overnight in just over a month so there will have to be a certain amount of cleaning done. But that’s a lot of weeks.
My plan is to do a tiny amount each week backed up by Growler doing a slightly larger amount each week. Certainly trying is more rewarding than not. But at the same time I have to balance the other things I need/want to do and to do no harm. Triggering a relapse or setting myself back is the last thing I need.
January has proven to be a very frustating month for me. It’s been difficult now Growler is working a full time office job and he’s been busy there so preoccupied as well. It’s a steep learning curve adjusting the balance.
I’ve worked hard to give him gifts of being strong and self reliant – to a certain degree. Quite rightly it’s gone unnoticed because that’s the point of not being a constant drain or constantly needy. But there are points I reach a critical mass and can’t cope alone. It seems the tipping point has been the emotional battle with incapacity.
My frustration 2 years on from my official diagnosis of CFS (preceeded by a year of uncertainity, misinformation and denial) has hit me hard. I found myself in a knotty ball of anger, upset, hurt and confusion. Why me? Why am I still sick? Am I too blame? Do people think I am doing things wrong? Will I ever be better? Did I do something terrible – do I deserve this?
Considering I spend 24/7 living with debility and incapacity I’m proud of how I am positive and happy most of the time. This bubbling over of emotional and anguish are understandable. It’s certainly not easy to reconcile having spent the last 2 and hald years almost continously sitting on the sofa or being in bed. Meanwhile life has carried on (almost) without me and without missing me.
Growler reminded me that I am better than I was a year ago. I have improved. For that I am very happy. But I heard myself wail, “A year. A whole year of self restraint. Of being careful to get THIS? The get this tiny, tiny improvement? This tiny improvement that could be stripped away with one wrong move? It’s just not fair.” Growler said he’d rather take the tiny improvement than me being worse. He’s the naturally optmistic one is our relationship.
What scares me is that I might be saying the same things in a year, 2 years, 10 years. Or that this might be the best of times and worse could still come.
I want to be able to accept with certaintity that I have ME for life, but that remission is possible. Just so I know what it is I am fighting.
I want to accept ME is always going to be a factor without a suggestion that accepting that is a weakness. That accepting it means I am giving in, or fulfilling a ‘sickness role’ or choosing to fulfill ‘sickness behaviours’ or deciding to choose to be ill instead of setting myself free.
It’s made more difficult for me because my dad is a therapist and counsellour who was taught that CFS is psychological. I think since his own daughter, happier in her life than ever before, developed the illness those ideas have been challenged and I think set aside. Honestly I don’t know if his reluctance to talk about my illness or to accept it as long term is due to a belief in somatics with this illness or due to good old fashioned fear. Fear for me, fear for himself, fear from a conflict in the “truths” he has learnt in his profession.
Does he not want me to accept I will always have ME because of mind over body or somatics? Or because he’s frightened for his daughter and himself to have to face a lifetime of her incapacity? Or because he himself has had periods of extreme fatigue and maybe he’d have to hear a voice inside himself he doesn’t want to?
I don’t know the answers and I can only speculate because he won’t talk to me openly about it. But I do know that this seems to cloud my own thoughts.
The way I have survived, coped and prospered this last 2 years is acceptance whilst maintaining hope.
Sometimes I question if that’s good enough to make a recovery. That if my attitude was “I’m going to beat this whatever it takes” I’d be well again by now. Is acceptance and living within limitations a way to self perpetuate my sickness behaviour?
I believe my illness is organic and physical. I do wonder if programming the mind can alter autonomic disfunction but I’m not willing to gamble the health I do have to find out. But it’s a nag in the back of my mind like a hundred other questions and uncertainties with this condition.
I see acceptance whilst maintaining hope as a powerfully positive way to move forward with this illness. That little by little it is possible to make a recovery just like Charles Shepherd describes in his book. But as someone who likes a quick fix and is aching to get back to living a full life a magic bullet is a tantalising prospect. Is the fight with ME a quiet long fight? Or is it one where you gamble your body with a quick mind over body fix?
When I finally saw a GP who was good enough to recognise and brave enough to suggest to me that I may have Chronic Fatigue Syndrome one of my first reactions to Growler was “I am going to fight this with everything I have and I am going to beat it”.
I wonder if I have let myself down?
When did I stop believing I would fight it and beat it?
I remember the (awful) Occupational Health woman at my old workplace saying “you can beat this” and rolling my eyes because she just didn’t understand. Because months earlier I’d realised you can’t fight ME/CFS like you fight a cold. You can’t fight against it, push past it, beat it down. Because it’s in your cells messing everything up, misfiring signals from your brain, robbing you of energy and function.
I think of the not-so-great GP I saw when my ME was mild and I was heading back to work to *push through that last bit of tiredness*. I asked how long should I wait to come back if I didn’t improve? How long would feeling this tired not be normal for?
She said as winter was coming it could take 6 months to be back to normal, but “certainly if you’re still this tired in a year we’d want to be referring you to a specialist. Not that it would do you much good. To be honest they’ll just give you a graded exercise programme to do and that’s really for people who’ve given up. People who’ve taken to their beds and given up. But you seem a sensible with a good head on your shoulders so I doubt that will happen to you.”
It strikes me now that in her eyes I’m probably one of those who have “given up”. Rather than what I really am – one of those people who was never told what was really wrong with me (I assume to not infect my mind with negative illness behaviours) and was sent back to work without understanding what I was dealing with. One of those people sent off misinformed and misdiagnosed to run myself properly into the ground until I was more sick than I’d ever been in my life. One of those people who would need certainly more than 2 years to get back to the level of function I had sitting in her office that day.
And I wonder why I’m so angry?
If she understood acceptance of limitations with this illness then I’m sure I wouldn’t be so ill today. I might even be living a semi normal life as I was making a good recovery back then in Autumn 2006.
But one thing I suppose this must prove to me is that accepting your limitations doesn’t make you more ill. Because that doctor sent me back to work with the belief that I would gradually improve. I wasn’t even trying to attain crazy levels of fitness – I was just approaching each day knowing I would get stronger and stronger. Knowing that the worse was behind me and keen to get back to my life. Despite those beliefs I got sicker and sicker until a few months later I was worse than ever.
I do believe that it’s possible when people give up that they can go downhill. You can stop fighting a fatal illness and let go and die. That I believe. But acceptance isn’t the same as giving up. And fighting isn’t just about carrying on like everything is normal. Some of the most courageous and fierce battles are the ones we don’t reall see or hear, that take months and years of quietly getting on with it.
I choose to accept my illness and my limitations but to maintain hope. I choose to fight my illness in a quiet way and that fight is with me every hour of every day. I want to feel assured in those choices every minute of every day.
Just because my illness doesn’t fit with someone’s view of what illness is, or my fight doesn’t look like the kind of fight they know or my acceptance is something they’ve only seen as surrender before – that doesn’t make me wrong or foolish or weak. In many ways they are fortunate not to have known the pain I know or to have been forced to see the world the way that I do.
My acceptance is not an easy option. It’s a fight in itself. I could do with those who think otherwise to try to understand that than to push against it. Because, frankly, my life is hard enough.