Wednesday 19 September 2012

So How Am I?

These are extraordinarily difficult posts to write.

If you were to look at the very first few posts on this site, and their comment threads, you would see how uncomfortable I was with discussing my health from the very start.

I have spent my life pretending I'm OK whenever I can. Most of my family and friends say that they were staggered when I started writing here, privately, in front of the whole world. They had absolutely no idea how I really am because if I let them know, I have to admit it to myself.

I hate sympathy. I mean phobically, rabidly detest it. Sympathy is the big neon light that confirms my secret is out. There is no sympathy without pity and I cannot bear the moments where I see that my life can be pitiful.

But I made a choice to shine a light on this other world. To draw back the veil on a life like so many millions of others, lived beyond the comprehension of most. Because without comprehension there is only the  ignorance of being judged. If I don't edge into reality now and then, lay myself totally bare, face the day as it is, just for once, then none of what I write has any meaning. It has no context.

I've been very unwell since my last operation. I didn't recover as I normally would.

I started to get hot-poker stabs of pure pain at the site of my surgery, so breathtaking, I would shout out involuntarily. I am no surgery virgin. As the days and weeks went by I failed to put on weight as I normally would. I was weaker than I should be and I had all the symptoms of obstruction I was supposed to be free from.

After the horror of my recent stay, I found myself with no medical or surgical support at all. No gastro, no bowel nurse on the end of the phone, no dieticians, no surgeon, no cardiac consultant, no more lovely rheumatology specialist, no respiratory doc, no neurologist. I had to start over to get the treatment I so urgently needed.

Chronic care is not acute care. The endless, bureaucratic hell of trying to negotiate urgent treatment is a farcical, kafka-eque, nightmare of unbelievable delays and disappointments. You just won't know unless you've done it, so you will simply have to trust me when I say that you just have to play the game. You wait the waits, you succumb meekly to all of the same predictable delays and conventions. You live a limbo-life of survival.

I'm malnourished. I daren't eat more than once a day. If I eat at lunchtime, I will writhe all afternoon but might enjoy a few hours with my family in the evening. If I need to do anything at all during the day, I dare not eat til the evening and so pay the price through long, sleepless nights.

I try not to faint at the school gate. I wonder why I'm crying because I can't find a bill or satchel and realise I'm shaking with hunger.

I allow myself two days of opiate-cloud escape at the weekend, when I can hide away in bed and Dave can compensate the boys with ice-creams and parks and bedtime stories.

But I itch and I sweat and my nerves jangle and jump. By Monday morning I never want to see a painkiller again. Then, by Friday, I crawl into the surgery again, convinced that it is, after all, a price worth paying for some peace from pain, however fleeting.

We dare not plan, Dave and I. Yet we do plan. Because life must somehow go on. We fill our diaries cautiously with normal lives until the normal life becomes chaotic and frightening and uncertain all over again.

I have never needed surgery immediately after surgery before. There has always been some respite, a brief few months after the horror of an operation, that mean I always remember there will be better times ahead. You need some fight to go into surgery. Some strength and reserves and acceptance. I have none of that this time. I am still a painfully thin, weak, little bag of bones.

I am lethargic. I don't want to write or check my emails. I don't want to climb into a frock and a painted on smile and fight for justice. I don't want to pay bills or make phone calls. Even my old friend adrenaline is becoming more and more reluctant to drag me through.

So I hide away in the twilight of this limbo-life. Please, don't make me look, and later, we can pretend that this was all just a bad, bad, dream.


  1. More hugs. And lots of love.

  2. Oh my word I feel ashamed for how sorry for myself I am feeling today! I dont know how u cope with all of this and still manage to fight so hard for others. You truly are an inspiration. God bless x

  3. I'll just say this, but it's probably too late..go to a different hospital. Xxxx my prayers go with you, in my thoughtsxxx

  4. I'm glad that you did decide to write about it here. I'm only new to blogging, and felt that I too couldn't write about it, not wanting to sound all 'woe is me', but I think that we're all 'allowed', and surely blogging isn't just about your campaign to help people, but it's about you too. And people do need to hear this Sue: it's your journal, your 'day' book, your take on life, which is what 'jour'nalism is surely all about, and a journalist is surely what you have become along the way.

    Those of us who have followed you for a while are just as interested in your daily life and the brave struggles you face, as our interest and admiration for your tireless campaign for the vulnerable.

    For many of us, our worlds are closing in too bit by bit, due to continually deteriorating chronic ill health, financially, acute family problems, and in terms of care support. The only thing that helps a little is being able to say how you feel, and knowing that others are thinking of you, that they fully support you in spirit (although helpless to do otherwise).

    I was going to explain what things are like for me, hell on earth at present, but I deleted it: this is your time to express how you feel, not mine. I will just say a little about a very sick friend I have who is taking Morphine for pain. She has fought a long battle for DLA and become very depressed along that road. It's not as if her life was nice before since she was married to a man who used to beat her badly; she's very prone to depression and anxiety as a result. She said that she can't understand why she was still crying and feeling down weeks after winning her DLA award. I told her that apart from the trauma and aftermath emotionally of the claim process, it is the realisation that the money - although welcome - can only buy certain things. When you have a deteriorating condition, it can't buy your health back. Along with money, no amount of support in all areas in your life, whether via family or carers can do that either.

    She also told me that her 'friends' keep getting annoyed with her, telling her that she must think 'happy thoughts'. I was so angry about that. I said that it's akin to putting icing on a pile of shite and calling it a cake, because chronic illness is a pile of shite that you never really get used to; you dress it up a bit, and have your little windows of happiness, but the consequences of it never goes away. And to top it all, the real icing on that pile of shite is your battle to stave off the depression and desperation that goes hand in hand with it each time you have a new deterioration (excuse the language).

    So along with others Sue, my thoughts and prayers go out to you. Some people just don't get a break do they? But you deserve a break more than most, and what is happening to you is so very unfair.

  5. Sue - as a mother who watched her child in pain for many years I can hear her in you so a big very gentle hug (((hug)))) I know that real hugs hurt.

  6. I am so sorry. I wish we could all do something to make you better. Sending some ((((((((hugs))))))))).

  7. Desperately, desperately sorry it's like this, Sue. So, so wish I could do SOMETHING but I know there's nothing... but I hope you do find helpful, kind medical professionals for all the various specialisms you need, and I hope, more than anything, that you find relief in whatever the medics decide to do next to help you. You so badly need a break, health-wise, and so do Dave and the children, so you can enjoy being a family again. And if you need to ask someone to moderate comments or block people to get rid of the trolls, please do that - you need to be kind to yourself xxx

  8. as you know sue i have always been a big fan of st marks hospital having been a good friend of the late Sir Alan Parks who i had known since 1976 who i had to see with what at the time was a small problem

    I still feel the team their are the best in the world and as the saying goes once a st marks patient always a st marks patient

    I do so hope that who your now with treats you well and you can strike up a good friendship with as long standing conditions are always best dealt with a understanding and supportive consultant

  9. Sorry to go sounding all Healthcare professional but are you drinking enough fluids? With all the delays and bureaucratic nightmares to deal with please make sure you are drinking water (if not flat lemonade or something).
    Hope you get seen again ASAP

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  12. Thank you for your words - for telling your truth.

  13. Take good care of yourself, Sue. You do so much for others...your health must come first. (Easier said than done, I know)

  14. Hey xx I would just like to take a few minutes to let you know that I love your blog! It's a truly awesome read. I've had surgeries over the past year which haven't been easy to recover from, I'm still recovering from major knee surgery I had done back in April 2012. My pain levels at times are insane!! I worry each time my medical prescription nears it's end for fear of making that call to request more meds, to endure someone indirectly making the assumption that I'm a borderline junkie!!! Very annoying, since my pain at times literally knocks me out, one minute I'm writhing in agony, the next I'm waking up! Then there's the added stress brought on by Atos, who couldn't literally give Atos. Who wanted me to take public transport, with all my meds, medical aids a thigh to ankle leg cast merely 4 days post op, a journey that would have taken, by their timings, 25 minutes including the one minute walk over the pedestrian crossing and all this whilst on oxycodone. Idiots. I absolutely love reading your profile, it's wonderfully inspiring. To go through all you do and to have a big smile that shines is simply awesome xx keep it up! :-)it's quite simply brilliant x

  15. the welfare state was meant as a safety net for times of need however it has now turned into a way of life for millions of people whereby generations of families have ever seen a workplace or thought they should bother looking after themselves.

    now it is a regular place to hear the response 'am on the sick' when you ask these people what they do.

    the welfare reforms are there to make work pay. why should someone on benefits have better quality housing and more disposable income than someone that works all the hours god sends?

    the benefits cap equates to a salary of £35k which is far higher than the average wage.

    this is the lunacy of 2012 britain where laziness, fecklessness pay and bothering to work doesnt. if the reforms encourage more people to work then claim benefits they will have done their job. stop the benefits you will see brits doing the jobs eastern europeans used to do.

    Again question never answered if benefits are such a bad thing why are millions desperate to stay on them?? shame how noone bothers to answer that question!

    1. You've asked this question before on this blog and been answered comprehensively. I'm only replying to this comment in case it should mislead new readers.

      In addition to being about Sue's life, this blog discusses benefits and welfare issues for people who are too sick or disabled to find or keep work. The alternative to benefits people in this situation is no income at all - which means families without food or heat, if you really want it spelled out.

      There is plenty of evidence on this blog and elsewhere that many people who are too ill or disabled to work are being denied benefits. The rate at which people too sick or disabled to work are being denied benefits has been going up in recent years, and is set to rise much more.

      As your points are about other topics entirely, it would appear that this blog is not relevant to your interests.

    2. There are actually no families at all that have been workless for more than 2 generations. Just a few hundred for two generations.

      The benefit cap of 26k doesn't mean everyone on benefits gets 26k!!! Far from it, but a neat trick by politicians, I grant you.

      Despite your envy, "someone on benefits" does not get more disposable income than someone who works, that is so silly it's laughable. Over a third of Disabled people live in poverty - way more than more able citizens.

      And the most obvious answer of all - if a sick of disabled person cannot possibly work, then the alternative is benefits. Few of us like it. Without benefits, there is simply starvation.

      All my figures are DWP figures, yet oddly, they don't share them with you - why is that do you think?

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