Thursday, 1 August 2013

So, How am I?

I absolutely hate doing these posts.

I believe they're vital in our fight. It's only by seeing HOW we achieve what we do that we can explain why there are barriers and obstacles others don't face. It's only by saying what we go through that others may understand how very, very far we need to travel in support, services and "work provision" for those with fluctuating conditions.

Nonetheless, it either elicits cries of "Oh poor you, you're so brave" or well meaning hints at "inspiration"

There are millions like me, carrying on, day to day, through extraordinary situations. Some work, some can't, some give up, some fight on. It isn't brave, it's life as we know it.

However, there will always be those that question our ability to type, or speak, or attend. To fight and oppose and organise. Just like your lives, some of us sink and some of us swim. Could you really judge either?

However, a while ago, I wrote that my Drs and surgeons were saying those dreaded words. The words that turn every heart to stone. Previously healthy or constantly ill, that snuff out hope and ambition in a moment. "There's nothing more we can do."

I vowed there was plenty I could still do and set about doing it. The medical opinion was that my petulant bowels had suffered so much surgery, they had simply given up. They had succumbed to a nice long sleep and just wouldn't work any more. It was agonising - when you put food or drink into a receptacle that refuses to process it, you writhe and vomit and spend hours on the toilet in a fairly miserable facsimile of life.

They told me to go to bed, take lots of opiates for the pain, be fed through a tube and possibly consider a bowel transplant.

I surmised that those were the very worst things you could do for a sleepy bowel. Opiates make them sleepier, exercise, however gentle stimulates spasmodic responses and eating - however painful and problematic - keeps things moving too.

So, I realised at that moment, that to do the best for myself, I just had to accept the pain and vomiting and diarrhoea and introduce the "Stuff you Drs" plan.

I've slowly built up the distance my weak and wasted legs will carry me. I've eaten "little and often" however much it hurt. I've kicked the opiates into touch bar all but the most delirious days. (A 66% reduction so far)

And I'm proud to announce, it really has worked. Oh, I still feel absolutely dreadful. The pain is searing, it seeps into everything I do. It takes my breath away, leaves me unable to talk. But the vomiting has eased a lot. I'm still sick, but much less often.

And......drumroll please...... I've put on 9 POUNDS!!!!! I am half way to my target and well out of the "feeding you through a tube" hell of permanent and more significant disability (in the true social model sense that the tube, not the feed would disable me so much further both in barriers and the eyes of the general public)

So what can I say? It was extraordinarily tough. So tough, I wonder how I've managed it. I DON'T say this for pity, simply that it's true.

But here's a wonderful thing!!! the Drs I thought I would have to fight have embraced this totally and supported me 100% in my attempts to find less medical ways of dealing with my symptoms.

This is seriously impressive. My new hospital has earned the acclaim of being named because this is truly awesome and I have no hesitation at this point in revealing that the wonderful Drs are at UCH in London.

They have found that I have severe "bacterial overgrowth" from all the operations with a simple test and have started me on an intensive regime of antibiotics to kill all the infections and then.... Pro-Biotics (industrial strength) forever!!!! How cool is that!!

But, they've also discovered that my Vit D is low and this could cause a lot of the fatigue and muscle wastage in Crohn's!! So I'm getting industrial doses of Vit D too. They've recommended a particularly good peppermint tea (no, really!) and have written to my GP to ask that she consider hypnosis for the pain!!!

How astonishingly wonderful is this? To be honest, it's all I've ever wanted from Drs - support to manage my condition in the most natural, effective way for me. I'm not anti-medicine, I just don't want more than I absolutely need.

So how am I???? Hahahaha, that's a tricky one. I'm atrociously better, agonisingly stronger and miserably happier. The pain is awful, the "getting stronger" is like running my own personal marathon every day. There are things that could make this temporarily "better" but I must shun them.

It's horrific.

But am I living a better life? A million times yes. I engage with life again. I spend time with my children and husband. I walk, agonisingly slowly through the shimmering summer days. I cook again and nourish my family in the way that fulfils me most. I laugh and I cry and I feel. The good and the bad.

I'm sure there is some tummy-griping herb that could replicate my symptoms for IDS or Hoban. Perfectly harmless, but equally grinding. If they were to pledge to join me and experience the days as I do, I GUARANTEE they would get serious about sickness, disability, welfare and working in about, hmmm, 7 hours. If Mr Hunt would like to play too, I bet the NHS would suddenly be a very different beast to him.

Do you read this and expect everyone could or should do as I did, make the choice I did? Try it with me and tell me if you could.

As I said, some sink and some swim. In illness as in life. Tomorrow I may sink too. Today I'm swimming for all I'm worth.


  1. I am very impressed by your Drs.
    And glad you are a tiny bit more fed/active/etc.

    (I have friends who persist in believing I will get better, if I'm having a better day they decide I'm cured.)

  2. That IS a risk Tig. Sometimes thse around me forget. I'm here, moving about, eating a bit, I must be better....

  3. As a fellow Crohn's sufferer of over 30 years I wish you well with your new treatment regime Sue. I'm also trying to manage a flare-up at the moment (though not as severe as yours) so I know a bit of what you are going through.

    Over the years I've been treated at over half a dozen different hospitals all around the country as I've moved around for work. One thing I've found is that IBD doctors are like economists. The old joke that if you have 100 economists in a room they will give you 101 different opinions applies equally well to IBD consultants in my experience. That's why I try to manage my condition as much as I can without them.

  4. It's weird - I get people telling me I was "inspirational" too when I fought to get my son into school, as well as the ever-helpful; "I don't know how you're doing this!". To which my only response was "I don't know either." And I don't know. I still don't. All I know is the "options" were infinitely worse, so what the hell else was I going to do?

    Sink or swim indeed. Wish I could throw you a lifesaver...

  5. Oya's Daughter - there's the response of a woman who understnads ;)

    Cantab83 - that is SOOOOOOOO true, lol

  6. U r a dolphin u have swam so much babe im so so please ur doing better. That pic of u recently u were actually glowingly beautiful. Love ur strength ur ethic & ur determination & im thankful there r people like u in the world fighting for us all. A total inspiration wh odeserved that award u won & many more. Kisses xxx

  7. This country is full of lovely people like yourself Sue, who ARE brave and DO inspire! Obviously because i haven't got Crohn's disease you don't help me like you do fellow CD sufferers, but if you didn't have something GOOD to give to the world, then myself and people like me wouldn't be commenting and complimenting on your website. In essence, i would take your side of the story ANYDAY rather than try to understand the problems CERTAIN politicians seem to have with 'disabled and unwell' people in Great Britain. As you understand, there is nothing more noble and important than addressing the unbalance between fairness in society, ESPECIALLY when the causes of most peoples problems are because of foolish and unimportant ideologies of ignorant political bastards. It amazes me that ANYONE in todays world can see money as more important than peoples health and welfare. The government can say what it likes, but it will NEVER make me believe that the way it is creating unfair issues for people with genuine disabilities is correct. I feel a natural, human, moral obligation to understand your views and feelings, that doesn't hurt me or rob me of any finances, it is only empathy i think. In the same way i would carry a person with no limbs across a river, i will listen and hear the voices of people who want to share their 'misfortunes and anguishes' with the world. The only trouble i have is your comments make me wish i was a politician, so i could create a policy that gives people more welfare and care than they could ever ever need forever and i bet the other people in the world wouldn't even notice how much money i had spent on disability reforms, even the rich ones! It isn't entirely relevant, but i would like to end with a poem, that reminds me of your website and it's causes and concerns. Thanks Sue. X
    SOLITUDE, by Ella Wheeler Wilcox.
    "Laugh, and the world laughs with you;
    Weep, and you weep alone.
    For the sad old earth must borrow it's mirth,
    But has trouble enough of its own.
    Sing, and the hills will answer;
    Sigh, it is lost on the air.
    The echoes bound to a joyful sound,
    But shrink from voicing care.
    Rejoice, and men will seek you;
    Grieve, and they turn and go.
    They want full measure of all your pleasure,
    But they do not need your woe.
    Be glad, and your friends are many;
    Be sad, and you lose them all.
    There are none to decline your nectared wine,
    But alone you must drink life's gall.
    Feast, and your halls are crowded;
    Fast, and the world goes by.
    Succeed and give, and it helps you live,
    But no man can help you die.
    There is room in the halls of pleasure
    For a long and lordly train,
    But one by one we must all move on
    Through the narrow aisles of pain."

  8. Tries again - I know you may not feel inspirational - But you are to people like me. I also don't like it when people say I am brave etc - I don't feel brave i just fight the battles that are presented to me. After all - What else can I do?

    But I find you an inspiration as it helps me to fight knowing others are also fighting.

    I pray this one posts as it will be 6th time lucky if it does...

  9. What can I say but awesome - Sue I am impressed by all who fight for themselves and others and am in awe by those who do it through so much pain.

    UCH London saw my #Dani through cancer so I know how good hospitals can be - they (the Middlesex as was then) looked after Dani oh so well and encouraged thinking outside the narrow confines of medical education - oh and they looked after us parents and the siblings of all the teenagers as well.


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  11. I have a pretty good chance of getting Crohn's myself - my mum has it, and her little sister also has it.

    Maybe I'll be lucky, but if I'm not, or I have another condition as disruptive to life, I hope I have your determination and can-do.

  12. You ARE an inspiration Sue!

    Your unreserved compassion and fervour have inspired me to add my voice to the fight!
    Because of your amazing spirit, I have been impelled to write to and meet with my local Lib-Dem MP, regarding these hideous "reforms".

    I'm fortunate that I have no physical pain with my illness but I know exactly what Tig means.
    I'm bipolar and agoraphobic.
    A "good" spell and suddenly, all is cured!
    Folks don't have any understanding of the daily battles to achieve the outward appearance of equanimity.
    I completely understand the first paragraph of your post Sue and I do agree. Only by talking about the hidden barriers and obstacles others don't face, can we elucidate and educate.
    Your impassioned eloquence and courage gives voice to those who cannot defend themselves.
    Thank You!

  13. To throw yourself into the teeth of pain like that and keep going is more than brave. To face up to it enough to write about it also needs courage. You help me to bolster my own cowardice in the face of pain.

  14. You love doing these posts because you are an attention seeker - be honest!

  15. it if weren't for the likes of sue the deaths rate of the sick and disabled would be far worse

    over the past 3 years i myself have not only lost all of my long term local sick friends through the added stress placed upon them by the welfare reform bill i have lost also all my on-line long term sick friends as well

    sue is the only one left who i could call a on line friend and i tell you now i feel like hell on earth despite my drugs

    just imagine John all of your friends being wiped out over a 3 year period how would you feel ?

    i tell you you would end up committing suicide that's how you'd feel the same as i do now at least i have my family and the police who look in on me and that's about my lot