Thursday 2 January 2014

I haven't posted for nearly a year, because in many ways not much has changed - more than 15 months have been eaten up with worrying abut Catherine's stomach disorder. After two gastroscopies, a capsule endoscopy, MRI scan, blood tests, barium test, manometry, a series of diet and drug treatments, she is still having nausea, fullness and acid reflux every day with no clear diagnosis or solution evident. We seem to have tried everything from cider vinegar to acupuncture, antacids and PPIs, exercising and not exercising, chiropractic, cyclizine, motility medicines, going dairy-free... a gluten-free diet helps the coeliac condition but not the stomach. I still think the whole thing was caused and is perpetuated by stress and worry, and she doesn't. Even if I'm right, I don't know how to ease the symptoms; how to break the cycle.

Meanwhile, going to Corrymeela was enlightening in some ways, difficult in others, as she felt so ill and homesick most of the time. Going to Sno-Mo special-needs camp in New Hampshire was "the best thing I've ever done" and as transformative as they say in their promotions. It confirmed her vocation to work with learning-disabled young people; her abilities and confidence blossomed; she finally decided after much agonising to pull out of BA languages altogether, even at Dublin, and reapply for Speech Sciences for 2014. Some of the photos show her unbelievably happy and beautiful, and she made deeper friendships than ever before. But what she called the "cold black lake" of depression was always lapping around her toes ready to pull her under again.  When I think of how she almost didn't go - that bleak night at Manchester airport, dead but for a handful of other passengersr and a display board until the first check-in staff appeared at 4am, and how she set off ill and desolate convinced she was going 3000 miles away from her only source of succour totally unfit to look after children when she couldn't look after herself... but she did go, and came back 12 weeks later shining with life. But still with her stomach problems.

Now it's a waiting time again, while she does several part-time jobs; hopes to hear from universities soon; hopes to be kept on at Waitrose; hopes for regular voluntary work at Peak School and New Mills Volunteer Centre; hopes without expectation for a definite diagnosis and treatment plan from her consultant Dr Koss.

Saturday 9 February 2013: C's ingrowing worry

Catmint has been in abeyance since New Year while we grind on with the cold and the snow, and Dave's latest injury (fell off his workbench and sprained a ligament in his right knee) and most of all with Catherine feeling ill every day - reflux, nausea, griping pains below, feeling painfully full after a couple of mouthfuls. She has endured another difficult procedure - gastroscopy - and must wait another couple of weeks to discuss the results with a doctor. Going back on a gluten-free and also dairy-free diet may well help. Feeling her stomach is blocked, though, is worrying and difficult to cope with, and the more she worries the worse it gets. She has found the label gastroparesis, but I just don't know which came first with her : the name or the symptoms - whether reading about the symptoms is enough to cement them into her brain and therefore body in a case of terminal addiction to medical websites, or whether it stems as she still thinks from injury to her stomach, and in either case how to break out of it. Mrs Harling thinks, and I think I feel it too, that it's the accumulated strain of last year taking it out on her gut. With C so much of a worrier, and very much on her own with no close friend around except me, who knows too much, her whole state of mind is like an ingrowing toenail.

But in the last few days there have been gleams of light - Corrymeela have asked her to go over for 3 weeks or so around 11 March; and meeting up with Natasha yesterday cheered everything up; and Camp America is definitely on for June. Also the decision to go g-f and dairy-free is something more positive to do than just worrying.

Tuesday 1 January 2013 Difficult Christmas

One good thing is the extra few minutes of daylight each day. Another is that M&S are keeping
Catherine on for another eight weeks, one of only four of the temporary Christmas staff to be chosen. This news raised her spirits one degree yesterday, for about two hours..
For the rest, she spends her time in a black and cheerless swamp, where it looks like she's wallowing but probably feels like she's silently drowning. This is because of the continuing acid reflux, which she is convinced she brought on herself by drinking vodka once in September. It started then and hasn't got better, so she is sure she has caused herself irreparable damage. I tell her that even if the vodka triggered it, it's her coeliac condition that perpetuates it, and produce the web pages that support this, but she won't accept this possibility and continues to beat herself up over what happened three months ago. I am sure the constant fretting and recrimination is making it feel a lot worse. It also says online that changing to a gluten-free diet will help cure the reflux, but this can take three months from diagnosis. She has only been gluten free for 10 days and probably hoped for instant improvement, so disappointment makes it feel worse again. Each of us thinks the other is in denial, and today she stopped talking to me so I must have been extra annoying.

Although it's been good to have Rik and Nicole here, all that seems to have happened over Christmas is worrying about Catherine. She spent most of her birthday in bed with a temperature, not for the first time. The raging industrial Christmas that beset the Merseyway shops, and the cold wet weather, and the dead time between bank holidays (which, from our point of view, puts beyond reach the doctors who might actually explain things properly to Catherine) make us think that the best thing we could do next year is go away somewhere sunny

Friday 14 December 2012

I am appalled to be 60, but have to get on with it now. In many ways I still feel that I am 16 and can't have learnt much in between. Two benefits are a senior railcard and the prospect of about £200 per month local government pension. Disadvantages are many and horrific and to do with sliding faster and faster away from the young people whose lives light up the world. But then it's up to me to stop sliding.

Rik sent a beautiful bunch of roses and lilies in an enormous box. Catherine gave me a lovely long M&S jumper and scarf, and took me Christmas shopping in Buxton. She steered me through several purchases and supplied other ideas, but soon I found I just couldn't cope with all the choices and people and prices and shops; I screwed up with panting breath and hammering heart and had to leave off shopping, and then the train was cancelled... Being screwed up over shopping was just stupid. Later this evening it was her turn to get upset with much better reason over feeling so ill for so long: nothing seems to control the stomach discomfort and the acid reflux that spoils every meal. Five days in, the gluten-free diet hasn't had any result yet, but she has unexpectedly got an appointment for endoscopy on 22 January - a lot earlier than we expected, but it means she must go back to eating gluten until she is tested, which may mean increasing the damage.

One positive development is her application to spend a few weeks at Corrymeela, a place I found inspirational back in 1977. They replied to her enquiry with only 3 - 4 days' delay, and sounded both nice and interested in her; at least, they encouraged her to complete her application, which she has done with care and thoughtfulness as usual.

Saturday 8 December 2012

Catherine has been waiting nearly four weeks for attention since the doctor told her the latest blood test showed positive for coeliac disease and she'd need an endoscopy to confirm it. Meanwhile she is meant to continue eating gluten-containing food so that the reactions they provoke will show up on the tests. But these foods produce the nausea, tummy pains, fatigue, bloating, etc that have been plaguing her for months. And she has just learnt - probably because I spent a good deal of Tuesday going in and out of the surgery and ringing them - that the waiting list is 14 weeks. So we have decided to go gluten free for a while and see if it makes a difference. Reading about it has confused me as to the difference between wheat intolerance and coeliac - some see them as a continuum as the symptoms are very similar, but apparently the causes and mechanisms are quite different. She seems to cope really well with work, considering how poorly she feels, though it's getting insanely busy, and from behind the till it seems that Christmas shopping aggravates everyone's worries and irritations, which get taken out on the sales assistants.But what gets Catherine down, besides feeling unwell, is the lack of definite plans for the months after the M&S job ends. So worries trundle on.

Sunday 19 November 2012

Catherine is well into her job at M&S, learning to work patiently and methodically under pressure from growing Christmas queues, and to withstand the fussy or supercilious shoppers and the one who regularly turns up at 5 to 6 for a full trolley shop and ends up at her till at 6pm while the other staff wait to lock up in a semicircle behind her... But I wish as much as she does that she didn't feel so ill for so much of the time. The M&S job will last till 5 January, but CSV haven't come up with a placement for after that, and though she does have several good ideas there is still the uncertainty, which has been nagging away for six months now and is bound to exacerbate the IBS symptoms. I think I perpetuate it too by joining in with the worrying.

Dave ruined a ramble today by losing his temper at Di when her dog tripped him up in a bog. He swore and refused to walk with her; I rounded on him ; he totally failed to understand that whatever the rights and wrongs of the case, shouting at people ruins everything and toleration holds us together. Though if it had been a child knocked over in the bog, I'd have been angry too. When I told Catherine later, she just laughed and said he probably deserved to fall in the bog.

Tuesday 23 October 2012 M&S

Catherine has been at M&S two days now, on induction, and loves it. Everything is planned and orderly; you have defined responsibilities and work within the limits; there are procedures for handling everything from frozen foods to complaints; there are policies on bag re-use, recycling and avoidance of waste; even the black stock-issue trousers are designed with loops for clipping your name-tag to and a pen-sized pocket for carrying your pen. What Dave would see as over-regulation and the death of initiative, Catherine welcomes for its sense of security. The training is full and systematic; everything has been thought of. There is always someone to ask when you  need advice, and they're happy to be asked. They welcomed her as part of the team right from the start; everyone is friendly, whether aged 17 or 70; she likes everything from the security checks to the eco-friendly waste disposal system to being able to get a cup of tea from the breakfast bar on arrival; in other words, she fits in well and gains poise and confidence all the time.