Wednesday 9 May 2012

Just not Right

When  people ask, I have two default positions,

"Not too bad" and "Just not right"

"Not too bad" is my situation normal - diarrhoea, tiredness, sometimes pain, a sprinkle of malnutrition and a pinch of nausea. The hardest thing for people to understand who aren't ill, is that I really don't notice any more. It doesn't hurt less, I don't feel less sick, I just don't notice.

On a bad pain day, I don't realise until I find myself crying because I've run out of milk or when my kids spill a drink. I'm "fine"

When I'm not fine, I'm "just not right". I find it hard to be more specific than that. After all, I already feel ill, I already feel sick, I already get pain. "Just not right" is something on top of that. This time it's been an extra dollop of exhaustion and a string of chest infections. I didn't think I felt too bad, but it was harder and harder to make it to school to collect the boys, harder to get round a supermarket. The exhaustion that I always feel became an insurmountable mountain.

After weeks of tests here in Addenbrookes, I had a procedure yesterday (colonoscopy) They had found a suspected narrowing in my bowel and thought that if they opened that out, the other symptoms might just fade away.

If you're squeamish, look away, but a colonoscopy involves shoving a tube up your bottom and weaving it up and up and up until it get's to the right place. It's very unpleasant.

Yesterday afternoon, procedure completed, a rather nervous looking doctor appeared at my bedside. She had a look of awkward pity on her face and long term patients know that if a Dr looks at you with pity, it's not going to be good news. It takes a lot to invoke pity in a doctor.

It turns out that, yet again, I was riddled with crohn's. My poor consultant had opened up THREE narrowings, but when he got to the FOURTH it was too tightly closed and he had to give up. In between the narrow bits was active disease, something I hadn't thought they would find at all. Basically, I'm a checker-board of obstruction, inflammation, obstruction, inflammation...... Again.

But there's more. The gamut of tests and tubes have found that I also have bronchiectasis - a lung disease that makes you more prone to chest infections. Exhaustion is one of the main symptoms.

Erm, and something else. They found I have Addison's disease too. My adrenal glands have packed up, leaving me low on adrenaline. The clue is in the name. Exhaustion is one of the main symptoms. It's getting a bit clearer to see why I couldn't make it round Sainsbury's eh?

If I stay in here much longer, I'll have a disease for every day of the week.

Ah well, sometime soon Mr Gaunt-Looking-Surgeon (or if I get lucky, Mr Genius) will re-appear and set a date to unzip me (again) hoover me out (again) and patch me up. (again)

They'll be setting up a central line feed into my artery, so I don't waste entirely away before surgery. I'll just keep sitting here with my West Wing DVDs and toffee bon-bons trying not to think about anything very much.

I miss my babies, my Dave and my lovely, sunny flat. I miss my elephantine beanbag and tea that is actually hot. I miss chilled wine and home cooked meals.

Most of all though, I think I miss the denial.


  1. What can I say that doesn't sound trite? Hugs aplenty


  2. Good Lord Sue, how the blithering f*ck did you do all that Spartacus stuff?! It's clearly most dangerous feeling rubbish the whole time, 'cos of course then you can't tell when you're 'too sick'. All I can say is nuff respect.

    And thank you for telling us how it is now: I hope your writing helps more non-chronically ill people understand what 'not fit for work' really means.

    1. My thoughts too. Nothing but admiration and good wishes for you, Sue.

  3. The I'm fine got me.How you keep going and manage to support others is beyond me.Hugs for you and your family.Hope you get a hot cup of tea soon <3

  4. I also wanted to add that you and other major Spartaci have made enormous sacrifices for the rest of us. You have made us less afraid, you have given us a voice and self-respect, and you have prevented powerful people from doing and saying some of the terrible things they were going to say and do. But the cost to you all has been huge and I don't know what to think about it. I don't think saying thank you again is enough. I don't know what we can do, but I do know that you only have to ask us if there is anything you need.

  5. Oh, Sue. "I'm sorry to hear that" doesn't quite cut it. I really hope you feel better after surgery and that they can treat the Addison's and bronchiectasis and that you're out of there soon.

  6. What can I say, sorry to hear that you've got more health problems seems so inadequate. We've been there, my son seems to be collecting additional diagnosis year by year. The effect, well they explain new symptoms, we find out how to live/work round the extra challenges. It's a situation that continually challenges us. Having the support of family and good friends keeps us going.From your blog I know you have that, and a lot of us that follow you will also be sending our best wishes to you.

  7. I'm so sorry you have yet more health issues to deal with Sue! You do so much for others I know many, many of us wish we could do something for you. xxxxxxxx

  8. Hello Sue, my name is Victoria and I've recently started following your truly incredibly blog. In fact I haven't been able to stop talking about your blog posts as they touch a nerve with some many of us with 'invisible illness' that are 'all in the head' (re your earlier post - mine is complex migraine). But one of the MANY things I so admire about you is how you manage to write so elegantly, passionately and with such insight whilst sitting/lying in a (most likely) terribly uncomfortably hospitable bed AND in such a lot of pain. I can barely even manage a post a week (and I'm in the comfort of my own home) so the fact that you write such consistently profound pieces astounds me.

    I don't want to say anything trite either about your current situation - so would you like me to send you some chilled wine, I could smuggle it in the post via an apple juice carton maybe so the nurses would never suspect!! Love Victoria

    1. How lovely! I'm so glad my blog "speaks to you"

      The problem with the wine is I couldn't even drink it if I had some. Regulars will KNOW things are bad if I forgo Gin-O'Clock and a nice crisp glass of sauvignon ;) Thanks for the offer though x

    2. Oh sorry that was very silly of me! Well, how about when you feel like you could manage it, we work out how to get you an IV drip of Gin! I swear by its healing powers (I am a Gin-0'Clock lady myself) x

  9. This is what the government (and currently healthy people) don't get. Every day we are ill and striving to cope. The average misery day gets coped with by saying I'm Ok, when we are not. Then come the worse than average days, when we just "disappear" for a bit and no one notices. Then come the "I think I'm gonna die days", and no one cares.

    To think you are going through all this just shows how good normal "work" is for us chronicaly ills. It puts us in hospital.It doesn't "make us free".We already work 24 hours a day, just to keep going.

    And they have the bloddy cheek to say you are not "entitled" to DLA and your ESA is stopped, because after one year of it now, everyone should be miraculously better.

    We either need to be left alone to cope the best we can with our coditions or a host of magical medical cures needs to be invented.

    Why can't the likes of IDS and Grayling and cameron see this?? They are sadists and liars the lot of them.

    Oh, and yes, why is hospital tea always in those horrible little green cups, luke warm and too milky?

    We should start a campaign for MUGS of proper hot tea!! Sometimes, it is the little things that help most.

    You are in my thoughts and prayers, Sue.

  10. I'm full of goosebumps, I don't know how you manage to keep such a positive outlook and remain strong. My thoughts and prayers remain with you and your family. If we need to take up a collection again to help with the family getting down to you on weekends just let us know. Seems that once we start falling apart, it's one thing after another. Best wishes Sue xx

  11. I know where you are coming from. Mine is "I'm OK" or "Not quite right", trying to deal with it all when something catches me unawares. A day when I'm more breathless or in more pain or just don't have the slightest bit of energy that my body just wants to give in. Dealing with multiple medical conditions, all of which have a significant impact on my life, and wishing there was a better day, when, in reality, there won't be, and I should face that. But I don't want to. I like to think that when my Mum asks if I want to go round the shops with her, I'll be ok. But after we've go out of the car, and I take my first few steps is apparent that I'm not. And then the next day my body is just like a lump of lead. One condition after another, and money being taken away by the state. That's "not quite right"......

  12. i hope u can get home soon sue

    take care

    love martin

  13. Kepp battling on, love - we're all with you!

  14. Don't know what to say except I'm hoping things improve and that I'm deeply grateful for the work you've done.

  15. God Sue, I just don't know how you keep going but what you have done has given so many of us fresh hope. Now it is time we should try to support you as best we can. As britishroses said - if you need help, ask! There are a lot of people who will help and who love you and your writing. I hope the unzipping etc helps.

  16. (((HUGS))) I simply don't know what else to say. I hate autoimmune conditions. xx

  17. (( Sue))
    I also wish you were with your family.
    Words can't express how much your blog speaks to your readers of the way the doctors and health professionals are so quick to simply not listen to you, the patient.

  18. *hugs*

    At least if the Addison's is now known, but had been undiagnosed before, that bodes well for the future - I believe it has treatments to reduce symptoms, at least.

    I saw a gastro yesterday, GP referred me after blood tests found no explanation for my low B12. The registrar quickly decided that my diet was fine, so there must be malabsorbtion. Quickly ordered an upper endoscopy (in a couple of weeks, I'm terrified, but I know it's better than a colonoscopy!) to check for pernicious anaemia (minus the anaemia) or coeliac, in case of the bloods being wrong, but went to check with the consultant. He came in and explained most of the same stuff again, and I asked some questions, which then caused him to ask some of me. Most noticeably, I asked whether anything they might find might relate to my IBS symptoms. He asked what they were (clearly the registrar hadn't told him), and I said, loose movements nearly half of days, some of which are part of violent episodes with horrible cramps. Less horrible cramps most days. Constipation some days. Occasional blood, but an appearance that a GP said meant it was probably coming from very low in the system. He promptly ordered MRI as well, just to rule out mild Crohn's. He stressed that it was unlikely, but worth checking. Before talking about my IBS symptoms, he had written off that possibility completely, though he knew I had some IBS. Was a very stark change in attitude, from "not worth checking" to an earnest "well, it's very unlikely, but we'd better check in case". Not sure whether I'm more terrified of the endoscopy or the possibility of Crohn's.

  19. You have written on occasions for the Guardian, Sue, and I remember they covered the Spartacus campaign quite well (Amelia Gentleman? - can't remember). Could this latest blog be sent to them? It's a stark reminder of the price you've paid for massively overdoing things in your efforts to highlight the government's attacks on sick and disabled people. Fit and well people simply don't have a clue.
    So very sorry to read you are so ill, and far from home. I wish you all the hot teas and G&T's in the world, when you are feeling up to them. Sorry to say the obvious, but presumably you have been checked out thoroughly for coeliac disease and gluten sensitivity (the two aren't quite the same). Also sensitivity to cow's milk.
    Really hope life will improve for you soon...

  20. Hi Sue,

    Your words are amazing. I don't know how you feel, but I know how I as an onlooker would feel. Dani had this way with words - you would say to her "how are you today" and she would say "so,so" If she said nothing and to her mother she would sometimes say nothing, then I knew her pain, her mood was not good. I would take her to dialysis and she would be slumped in the car in pain and sometimes despair. We would get to the car park and she would pull herself to her full height, take a couple of steps and you could see the hurt in her face, then something inside her got her moving and smiling and into the unit she would bounce asking every one how they were, and she would not tell anyone how bad she was feeling, or on a really bad day she would make light of it and dismissing it as if it was inconsequential.

    I never understood how she coped with the constant pain (that by the way she was too young to have according to some nurses and doctors). As her mother I never understood how she coped with the endless pain, the endless mishaps in her health, why she never shouted and screamed at the unfairness of life. I can say that as an onlooker the Sue's and the Dani's of this world deserve far more help, encouragement, care and other good things that seem available.

    Take care - I am proud to have known Dani and I am proud to know Sue (even if it is over the net'

  21. Helga

    Is there a way we can communicate outside of Sue's Blog. I'd like to find out more about Dani, if I may, and you don't mind telling me? (Karen)

  22. Oh Sue you poor thing,all my strictures(im being told probably 6 or 7 now but crohns has a way of surprising everyone) are to be removed.There's no saving those bits of gut and I too have active Crohn in between those strictures.

    Im nine years older than you and have lost half my life to Crohns,have had to give up my daughter to her dad when she was 4 because I was 5 stone and on deaths door.
    I admire you greatly for your ability to put into words what so many would not be able to describe.

    I spent 3 years raising money for,visiting and helping rebuild an orphanage in Romania all to take my mind off the Crohns disease.

    Ultimately it could not be ignored and I had to stop doing everything and just think about me and getting better.It gets harder the older you get.

    Your blog helps people understand what we and many other sufferers go through and yet somehow manage to keep going through it all.Thankyou

    Since December ive been "not quite right" im hoping to get back to being "not too bad"

    Take care Sue

  23. Sue

    I know all too well the shock to the system of yet another diagnosis, yet another problem to have to look after. Yes you know why you've been so ill, but you now have to deal with it.

    I'm so sorry things are so tough. I am thinking of you and hope that you get patched up just enough to get you home as soon as humanly possible.

    With much love.

  24. Oh Sue- yesterday's Tweet stands.

    Next time you see your kids, send them out with some Laptop Fund money for your toffees and some sweets for themselves.

    Sending a daily thought, a daily blog hit and very sincere best wishes


  25. I do hope that you get well soon, my dad had the same chest condition and had an aray of inhalers, tons of antibiotics etc. It leaves scaring on the lungs but the cheerful prognosis was that he wouldnt die of it!!
    At least you now know whats going on and can get set on your next journey.
    Good luck and god speed.

  26. This comment has been removed by the author.

  27. Big hug from me too. Remember I told you and Amber once, I don't do hugs. Smug pillock that I am.

  28. Keeping you and your family in my thoughts... lots of love and light... Dxxx

  29. Have been moved to tears again reading your blog. I hope you can get home soon to Dave and your lovely boys. I havent seen you in a long time, but am thinking of you. Have been recently diagnosed with IC and so have a glimpse of what it is like to be at the mercy of doctors, and its not a good feeling. Your blog gives others strength... keep strong, Catherine x

  30. Sending you good vibes, Sue. Following the NHS Risk Register issue closely today as Mr Lansley is dragged to the Commons to explain why they think they can just veto it. Will tweet regularly. Love from Liz from Derbyshire Anti-Cuts Campaign @DerbyshireCuts

  31. Thanks everyone x Howard, it's lovely to see you here, how's tricks?

  32. Hope you are feeling better Sue, and I wish you good luck with your forth coming treatment. People who are lucky enough not to be living with multiple chronic conditions don't really understand. I always say 'not too bad' even when I am feeling crud, and I often get 'your looking really well' when I'm not. I must say something about my treatment in various NHS hospitals over the last twenty years and that is that my treatment has always been first class in every respect. Perhaps I have been lucky. I am now looking forward to being 'cured' by ATOS. All the best and many hugs from me.

  33. Dear Sue,

    Am so sorry to read your latest posting. Will hold you in prayer that, surgery will be scheduled soon and that all will be well.

    AS for the DLA, you have to let someone help you challenge the bureaucrats decision.

    Sending you a cyber hug

    San xx

  34. Thinking of you. I hope you feel much better soon. Px

  35. Howard, good to see you (I'm Pam F)

  36. Dear Sue,

    So sorry to hear this. I'm amazed that you can remain witty, insightful and thought-provoking despite everything - we're lucky to have you keeping an eye on modern Britain for us and making us think.

    I hope the family are coping okay at this awful time.