I’m in hospital again

So, ironically enough, I am in hospital with an infection. So much for being an expert in the theory of infection prevention!

I was admitted yesterday, through A&E, which, thankfully, wasn’t too busy. I was moved to ‘Majors’, where everything was routine and normal.

As a quick aside, A&E in the UK is usually split into three areas: Resus, for the sickest patients; Majors for people who are quite unwell and will almost certainly be admitted to the hospital; and Minors, where the less life-threatening cases are seen.

Back to me: I was seen by one of the A&E doctors, who was very kind and very efficient (a rare combination!) and got the ball rolling for all the tests anc treatments I would need. One of the Emergency Department technicians came and put a cannula into a vein in my arm. She got a gold star for getting a vein on her first try. Once the technician had found a vein, she took lots of blood for various tests, and then left me alone to read my book.

About 3 minutes later, the technician returned with a slip of paper containing some blood results. She looked worried. The doctor read the results and looked worried. My nurse read the results and looked worried. I read the results and suddenly had a mind swirling with unprintable words.

After that, everything happened very quickly. Lots more tests, lots of medications, lots of concerned faces.

The magic numbers that caused all the worry, for those who are medically knowledgeable or like to google things:

Potassium: 2.6 mmol/L (normal 3.5 – 4.5 mmol/L)
Lactate: 4.5 mmol/L (normal range 0.5 – 1.0 mmol/L, or 0.5 – 2.0 in critically ill patients)
pH: 7.31 (normal 7.35 – 7.45)
Blood sugar: 8.9 mmol/L (normal about 4 – 6 mmol/L)

Since then, I have been on a medical admissions ward, where I’m perfectly content. The plan is to take out my Hickman line, which has been infected since January, with the same bacteria (staph aureus) despite 5 courses of intravenous antibiotics.

One of the wonderful nurses from the IV team came to see me, and has promised that he will squeeze me onto the list tomorrow for a PICC line (a less permanent central line, which ends in the same place as my current line, just above the heart, but is inserted in the arm and not tunnelled under the skin). This will give me a reliable way to get medications and fluids until they’re happy that the infection has gone, and can insert a new Hickman line.

I will be in hospital for a while…


Good intentions

I don’t have a bucket list.

There, I’ve said it.

I’ve lost count of the number of people who’ve asked me if I have a bucket list (things to do before I kick the bucket, for those who’ve been asleep for the last decade or so), or who have gone straight to asking me what is on my bucket list.

There are three reasons that I don’t have a bucket list:

1. I’ve never had the inclination and the energy in the same place at the same time

2. I worry about how I might feel if I completed everything on the list. OK – I’m done. I can die now.

3. (and this is the biggest reason, which is why I saved it for last) I couldn’t bear the disappointment of making a huge list of all the things that I’d like to see, do, experience, and then have it sitting there, in writing, as my body deteriorates to the point that I can’t do any of the things on my list.

Medically, I’ve deteriorated a lot in the last five years. Maybe longer. I try not to think about it too much. I find it difficult to sit up for any length of time now, which makes travelling hard (makes everything hard, tbh), I can’t eat much without a lot of payback, I’m almost constantly in pain. I don’t enjoy making people feel bad for me, so I’ve become pretty good at smiling through almost anything, but that takes a lot of energy, and makes the payback worse afterwards. Quite a few times recently I’ve peaked too early and the payback hit before I’d even left the house. It’s disappointing.

I try not to dwell on all the things I’ve missed. Weddings, funerals, christenings, parties, concerts, theatre, sporting events, holidays… Despite all the practise I’ve had at missing out on things, it doesn’t seem to get any easier. I still have the symphony of sobs; I still wonder how long people will remember that I’m here, and whether they’ll stop inviting me to things if I never go.

One of the questions that I’ve asked myself over and over of late is whether it’s worth the effort of keeping myself alive and medically stable – why I do it, other than that it’s inhererntly human to keep on keeping on. But why do I do it?

That’s not a suicidal question.

It’s a question that means I need to make the most of what I do have, and what I can still enjoy. Making plans to do fun things out of the house hasn’t worked terribly well, so I’m going to try making plans for things to do without leaving the house. If I’m bored of these few rooms, why not change them a bit? There are so many great seasonal festivities – halloween, bonfire night/Guy Fawkes, Thanksgiving, Christmas, New Year, Valentine’s day, etc. not to mention all the birthdays, and lesser known festivities, such as Eurovision and Cat in the Hat day.  I don’t want to let more of these days pass me by, ungrateful and sad that I can’t go out and celebrate. I want to make memories here, so that people will want to come and spend time with me, and so that you can all look back and remember how much fun we had, even when I couldn’t get out much.

I’ve got a month until Halloween, which should be more than enough time to come up with some fun plans (yay for Pinterest!), and I promise to take lots of photographs. I’ll photograph all the preparations too, just in case I’m not well enough to celebrate on the right day. I hope you’ll celebrate with me, either in person or by following along here, or both – I look forward to sharing all the excitement with you!


What Not to Eat

It’s 4 am, and I am sitting on the floor in the bathroom, alternately cradling the basin and a hot water bottle. I have been sitting here for a little over three hours, and I need a distraction from the misery of throwing up, as an attempt to stave off the impending Pity Party, so hello WordPress!

Why am I vomiting?

The complicated answer (and a quick recap of previous blog posts) is that I have gastroparesis and pan-enteric dysmotility, secondary to Ehlers-Danlos Syndrome. Which means, as you may recall, that my entire digestive tract is too stretchy, and hence inefficient.

The simple answer is that I ate too much on Thursday, and food has to leave the body somehow. The usual route is closed due to strike action today, so my stomach has decided to try things in reverse. It always amazes me that my stomach is all weak and pathetic in the right direction, but seems to work beautifully in reverse.

So far today, the retching and vomiting has been forceful enough to dislocate my jaw, my shoulder (twice) and at least one rib. Hence the Pity Party.

I thought I’d put my experience to good use, and recommend a few foods that are really not very nice on the way back up, as well as a few that are not so bad.

People with gastroparesis are usually advised to eat small meals every couple of hours, in liquid form if solid food is hard to tolerate. The meals should be low fat and low fibre. That makes for quite a limited, and not terribly healthy, diet (more details here if you’re a glutton for punishment interested).

When I was diagnosed with gastroparesis, I took all these diet recommendations to heart. I memorised the tables of foods to avoid, trawled the internet for recipes and meal ideas, and even drank supplement drinks with minimal fuss, and yet I was still sick. For months and months I forced myself to eat and drink all the ‘right’ things, knowing that doing so would cause pain, bloating, nausea and vomiting. Like Pavlov’s dog, I became conditioned to gag and retch at the very thought of Fortisip. I felt so guilty for not wanting to ‘comply’ with my doctor’s instructions, and so miserable that I couldn’t eat the foods that I craved, or take pleasure in the social gatherings that revolved around food.

In 2012, I had surgery to place a feeding tube, which completely bypasses my unhelpful stomach. I get most of my nutrition and some medications through the tube, so anything I eat ‘normally’ is purely for pleasure. Although eating is still associated with unpleasant symptoms, it’s no longer linked to feelings of guilt, judgement and shame, and I am gradually starting to mend my relationship with food.

The decision about whether something is worth eating takes some trial and error, but here are a few suggestions of foods to avoid, and a few that aren’t as bad as you might imagine. Don’t forget that whatever you choose to eat today, which may be ok when tasted in reverse, will mix with the food still in your stomach from earlier (maybe even yesterday or the day before). Strawberry jelly might be fine in isolation, but is a different flavour entirely when mixed with yesterday’s tuna mayo. A different kettle of fish, so to speak.

Not so bad:
– coffee
– bread
– vanilla ice cream
– mashed potato
– pancetta/lardons

Not recommended:
– cottage cheese
– beansprouts
– coleslaw
– sauerkraut
– orange juice
– red, red wine

Would you add anything to either of those lists?


Hospital Pain Specialist

Yesterday I had an appointment with a consultant who specialises in pain management. I’ve been treated in this clinic, by the same consultant, for several years, and really appreciate his input and expertise. If nothing else, it reassures my other specialists, as they know that I’m not just wandering around on huge doses of strong medications, totally unsupervised!

I was greeted by the receptionist in the Pain Clinic, “You must be Joanna”

“You’re the last patient on Dr Painclinic’s list. Make yourself comfortable in the waiting area. Can I get you some water?”

I was taken aback by this wonderfully warm, kind and efficient receptionist, who chatted to me while I waited, at the same time as preparing paperwork and tidying the reception desk. It would have been so easy for her to ignore me once I’d confirmed my name, and I wouldn’t have blamed her if she had wanted to hide behind the desk by the end of a long and busy clinic.

Getting to the hospital had been stressful. I had missed several buses because the wheelchair space was being used by pushchairs, and had the same problem with the lifts at the hospital. By the time I got to the clinic I was feeling thoroughly unwell after sitting up for so long: I was cold and shivering, in pain (appropriately), dizzy, nauseous and exhausted. The receptionist made me feel so much better. Nothing she (or I) could do about the symptoms, but she was kind, which helped everything else.

I really like my consultant in the pain clinic. He has been on my Dream Team (the specialists that I see regularly and who really get to know me, as opposed to those who offer their expertise from outside the inner circle) for several years, and feel that he really ‘gets’ my complex medical history.

We have a plan to continue increasing one medication very gradually. I have a target dose and a rough schedule for increasing the dose over the next six months, along with a Plan B if the side effects are problematic. I’ve been gradually increasing the dose for several years, so this schedule is nothing new, but it’s reassuring to have someone in charge.

We are also increasing the dose of the medication that I take for breakthrough pain, and Dr Painclinic wrote a prescription for a two week supply of the new dose (6 kg*),for me to collect from the hospital pharmacy. I’m currently on a dose of 4 kg, so this is the next dose available.

When I take a prescription for this medication to my local pharmacy they have to order it from their wholesaler and I collect it the following day. I was quite pleased that Dr Painclinic had given me a hospital prescription, rather than asking my GP to start the medication, so I could get the new dose straight away.

I took the prescription to the hospital pharmacy, showed my medical exemption card, took a number and waited. Worryingly quickly a pharmacist came out to talk to me. She told me that “basically your doctor has written this wrong.”

The prescribed medication is a controlled drug, so there are lots of specific rules about how the prescription should be written, so I wasn’t totally surprised, but I had watched Dr Painclinic write the prescription by hand, and it looked alright to me.

I asked the pharmacist to show me the problem, and she pointed out the dose.

“Basically your doctor has written this wrong because the dose should be 2 kg, and he’s written 6 kg. I’ve been trying to call him so he can change it.”

Slightly taken aback, I started to explain that Dr Painclinic had written 6 kg because he wanted me to be on a dose of 6 kg. I currently take a dose of 4 kg, and it’s being increased from 4 kg to 6 kg. He hadn’t written 2 kg because he didn’t want me to have 2 kg (the type of medication and the way it’s administered means that I can’t just take three of the 2 kg dose each time).

The pharmacist told me that she would ask ‘next door’ (the inpatient, rather than outpatient, pharmacy), which sounded promising, but she came back to tell me that she still couldn’t get in touch with Dr Painclinic, even on his personal mobile, to change the dose to 2 kg.

Stifling giggles/tears, I asked the pharmacist if they could perhaps order the 6 kg dose, rather than asking the doctor to prescribe a different dose. She looked doubtful but went off to ‘call downstairs’ to order the new dose. On her return, she told me that no-one had ever ordered such a high dose (the highest available dose is 16 kg). The pharmacy would hear from ‘downstairs’ tomorrow as to whether they can order the dose I need, and how long it would take. She offered to give me the 2 kg dose to ‘tide me over’.

I gave them my mobile number, so they can keep me updated, and left in a cloud of indignation.

Almost immediately I realised that it might be easier to get an outpatient prescription from my GP, so I had to go back to the hospital pharmacy for a photocopy of the paperwork, trying not to look like the same person that had just whirled out of there in a huff.

There is almost nothing worse than a failed exit.

*I don’t really take 4 kg of this, or any, medication, though it sometimes feels like it. I’m not sure yet whether I want to specify the names and doses of the medications that I take, so this is a deliberately ludicrous dose


The Internal Filter

The internet is full of articles, lists and rants about things that one shouldn’t say to a person with a life-limiting illness or disability. I think that many of the things on those lists are a matter of personal experience. I quite enjoy, for example, being told that I look well, but a person who doesn’t yet have a diagnosis might hear that phrase, however kindly meant, as a way of questioning, or invalidating, their suffering.

Most people have an internal filter of some kind. It is used to edit the available thoughts into those that are right for this place; this time; this audience. With varying degrees of awareness, we select or reject the stories, anecdotes, debates, queries and words that run through our minds, allowing some to be spoken, some to be put aside for another time, and some to be censored entirely.

I want to be able to have a conversation with you. I want you to feel able to ask questions, to offer help, to talk about the state of my crumbling and decrepit body, or maybe just about the weather, current affairs, or the latest book you’ve read. I don’t want these conversations to be lexical assault courses, leaving you exhausted from hurdling handicapped, sprinting past spastic, ducking, diving and dodging diagnosis, deterioration, death, demise.

There are so many words, from the dictionary or slang; words borrowed from other languages. There are so many cultural variations, euphemisms and idioms, and so many different people, with different experiences, background, education, and understanding of language and disability. I hate the thought that someone might not talk to me because they’re scared by this minefield of words, and don’t want to cause offence or hurt my feelings.

I hate the idea that I might be ignored and isolated because some internal filter blocks all avenues of conversation, and as a general rule, I would rather people talked to me than not.

There are exceptions to this, of course, and many of you will have heard this story, but I’ll tell it again, for posterity.

It happened one evening, as I was on my way home from work, navigating the underground sea of commuters. I was wearing a suit, stilettos, a wheelchair, and the blank stare of a long day. I paused, considering whether to go out for a drink with friends, or to heed the siren-call of my bed. A man in a suit walked towards me, and I smiled, as most Londoners do when approached by complete strangers.

“I hope you don’t mind,” he began, “but I wanted to let you know that I was having an awfully bad day today, and then I saw you, and realised that in comparison to yours, my life isn’t so bad, after all, so thank you.”

Years later, I still haven’t thought of a response, except the silent wish that his internal filter had killed and buried that thought before he could share it with me.




Coping with pain

A number of years ago, a friend of mine in the US introduced me to the idea of guided imagery as a way of dealing with pain. Until that point, I’d used a rather unlikely mish-mash of guided imagery and progressive relaxation, along with memory exercises for distraction. I would, and still do, recite the states of the USA and counties of the UK in various permutations (alphabetical, geographical), and premiership football clubs, in league and reverse order and alphabetical/reverse alphabetical order (though my interest in football has seriously waned since my dad died and I no longer have to be prepared for frequent conversations about sport). The exercises are a combination of mental discipline and clutching at straws.

Guided imagery has the advantage of someone else’s voice cutting through the pain and all the associated thoughts; anchoring me and pulling me back from panic again and again. Of course, that is also its disadvantage. Listening to someone with a high pitched voice or strong regional accent stumbling over a script is not as painful as repeatedly dislocated joints, but it’s pretty unpleasant, nonetheless.

Nutmeg-the-first-cat made a very good alternative focus – she purred loudly (as only a really deaf and contented cat could) and was warm and constant in her presence on our bed at night. Cocoa-the-new-cat is inclined to bite, which is less helpful.

It’s always in the quietest and darkest hours of the night that the pain seems unbearable. It isn’t just the sensations of pain, but the thoughts and statements about the pain that one can slip into, almost unconsciously: I can’t take much more of this; the medication is never going to kick in; I’m not strong enough; it isn’t fair. Even the word *pain* is heavy with implication; barbed and loaded with judgements.

Doctors tend to prefer other words: discomfort, in particular. Never was a word so unfit for descriptive purpose. Discomfort is too much food at Christmas, tight shoes in warm weather, sand inside a swimming costume. The end of the world would not be heralded by a feeling of discomfort, however strong.

Discomfort aside, it can be helpful to analyse and relabel the sensation of pain. It isn’t easy – having the courage to focus on the pain, even for a short time, can feel like leaning over the edge towards a steep drop, but I tell myself that’s the sensation of winning. If I can squash the pain into a smaller word, like tightness or aching, it has less power for an instant. What sounds almost comical in the warm light of day can feel like the most desperate of battles towards the word with the least power (‘a bit sore’ is a current favourite).

Because of the syndrome that I have, local anaesthetics and sedatives have little to no effect on me, so the solitary practising in the middle of the night pays off when I can have a set of stitches done with no anaesthetic, or a joint ‘popped’ back into place. “Oops,” said the orthopaedic surgeon after one such occasion – half an hour of pulling my shoulder out of socket and back in every conceivable direction. “I thought you’d already been sedated.”

No, and it was a bit sore.

In a world in which understatement is right next to Fentanyl in my arsenal against pain, that made me a winner.