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!


Energy budgeting and setting priorities

My condition, and the ways in which it affects me, can vary wildly from one day to the next. Sometimes I can predict the change; sometimes I can’t predict it, but can see the reasons with the benefit of hindsight; sometimes the difference seems entirely random.

As I’m sure you can imagine, this makes it difficult to make plans – not just for the big things, like looking for a job, going on holiday, or hosting parties, but for just about every decision of every day. It also makes it very difficult to explain to other people – it’s hard to understand why I can’t sit up today when you saw me sitting up just fine yesterday.

The Spoon Theory, by Christine Miserandino, explains the concept of ‘energy budgeting’ very well. Every activity has a price, such as how much energy it takes, or how much pain it might cause.

The amount of energy it takes to do any given task is not fixed. Making a cup of coffee becomes a more difficult/expensive task after a nasty shoulder dislocation; even more so after dislocating both shoulders. Making that cup of coffee is not so difficult if I’ve dislocated my knee and not my shoulders, but carrying it might then become an issue. If I’m having problems with blood pressure/heart rate, sitting upright to pour the coffee becomes downright dangerous, and that’s assuming I’ve even managed to get to the kitchen in the first place!

I often try to combine tasks – the ‘extra value meal deal’ technique. The cost of filling a hot water bottle at the same time as my coffee mug is not much more than filling the mug alone. This is generally good, but can sometimes backfire. While I’m waiting for the kettle to boil, I’ll do the washing up, empty the dishwasher and wipe the kitchen worktops. By the time I’ve made my coffee and got myself back to the sofa, or have to bed, I’m too exhausted, in too much pain and too nauseous to drink the blasted coffee, and fall asleep with my hot water bottle (good thing I filled it, huh?).

The risk of running out of steam during the day is pretty high, so I have to prioritise. My mind is always filled with ideas, projects, and Cunning Plans, but my body is not so willing. There are lots of medical tasks that force themselves to the top of my list of priorities; there are lots of ‘should’ tasks up there too.

The medical things have to be done, otherwise there is no chance I’ll be well enough to do anything else. The ‘shoulds’ don’t really have to be done, but they are the things that make me feel guilty if I don’t do them. I’m sure you’re familiar with these: most of them are household chores or admin tasks.

I’ve struggled a lot with the shoulds. Rationally, I know that I should spend my energy and time doing the things that I love; the things that benefit my relationships, and which make me feel like me, but I feel so guilty when I choose to go out with a friend or watch a film instead of doing the laundry. Having carers has helped a great deal with this. I delegate the household chores and medical admin tasks to them, and instead spend my precious energy on the things that I enjoy most.

I feel guilty about delegating the boring tasks, but I’d rather feel guilty than feel as though I’m just an empty shell of a person, with all the layers that make me who I am gradually stripped away by this illness. I had started to struggle to define myself, with nothing left except medical curiosities.

I hope you know that you haven’t fallen off my list of priorities, and that I haven’t forgotten you. My husband and I are trying to find more ways of including you, even when things aren’t going so well medically. Perhaps we need a regular ice cream tasting club, a Strictly Come Dancing appreciation (or just watching, without the appreciation) club, or a come and laugh at the cat group. I’m open to suggestions!


Something that jumped out at me

I can’t tell you how many times this week I’ve sat down with the WordPress app open in front of me, and yet I haven’t completed even one of the posts I’ve started. So many thoughts; not enough time, or energy, or concentration.

This will be very short, which (I hope) will mean that it gets published, rather than just festering in my ever-growing pile of drafts.

While reading a report from the Royal College of GPs (here) one sentence leapt out of the page because it describes so accurately the way that I want to be seen:

Finally, the work has clarified the strong desire among many of those who live with progressive medical conditions to be viewed by their healthcare teams as ‘individuals-in-community’, rather than as ‘patients’; active members of social systems to which they make a rich contribution, and which help to sustain them, rather than simply passive recipients of care.

The entire report, Communication and Continuity in Progressive, Life-Likiting Illness, is well-written and thoughtful. It provided a great deal of insight, and has left me with a few points to ponder, and some practical things to do, in order to improve the continuity of my care (not easy with 24 different specialists at 15 different hospitals). I often feel as though my ‘self’ has been buried under layers and layers of medical complexity, so I’m grateful for the validation that I can still be seen as a real person, not just a body carrying an intriguing and rare syndrome.

Also worth reading is a book called ‘How Doctors Think’ by Jerome Groopman, which explains (in a very approachable and accessible way) how doctors handle the information given to them, and how this leads to various decisions. I found it fascinating and challenging.

There are other things I could recommend for you to read, but I’m falling asleep. I’ve dropped my phone (on which I’m typing this) about 8 times, and have completely lost count of the number of times I’ve had to delete streams of gibberish, from my fingers trailing dreamily across the keyboard. You’ll have to wait until next time…

While you’re waiting, I’m always happy to receive suggestions of interesting things to read…


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?


EDS and the Dentist

I saw my dentist yesterday for a routine check-up. Because EDS can cause awful dental problems (teeth crumbling, small jaw and very high, narrow palate, teeth falling out because of weak bones/weak gums), I see my dentist every 3-6 months.

I’ve had a lot of dental work in my time. EDS causes resistance to local anaesthetic (it doesn’t do much, if anything for me), so having dental work done is not particularly enjoyable.

I had five teeth removed in my early teens because there wasn’t enough space for them in my mouth. I also had a cross bite, which is an interesting mixture of overbite and underbite, which took years of orthodontic treatment to correct. It’s still not quite right, so my jaw often dislocates when I yawn, chew or talk.

Most of my teeth have been treated with a protective layer, to stop them falling apart, which has worked so far (frantically looking for something wooden to touch).

To complicate things further, I don’t eat/chew much because of my digestive problems (gastroparesis and pan-enteric dysmotility), which weakens the teeth and jaw bones, and also means that I have a dry mouth most of the time. Autonomic dysfunction worsens this (imagine the dry mouth you get when you’re nervous and the fight-or-flight response kicks in), and I also take medication that can cause dry mouth. Saliva protects teeth, so having a dry mouth is not a Good Thing.

One more thing: the painkillers I use. Actiq lozenges look like a small lollipop on a stick. They contain fentanyl, which is related to morphine. They also contain sugar. The medication is absorbed through the mucus membranes in the mouth, so I hold a sugary lollipop next to my teeth for 15 minutes, four times a day. These lozenges are licensed to treat cancer pain, but can be prescribed to treat other types of pain at the discretion of a specialist in pain management. I don’t really absorb much through my digestive tract, which rather narrows our options to treat the pain.

Sorry – sidetracked.

My point was that I was worried about seeing the dentist yesterday, in case all the factors above had damaged my teeth so much that the dentist would have to pull them all out without anaesthetic. What actually happened was that I was in the chair for no more than 5 minutes, while Mr Dentist checked my teeth. They were pronounces ‘spotless’ and I was sent away to keep on doing what I’m doing. So nice to leave an appointment with good news!


Where am I?

Sorry for the absence.

I’m still here (here, being somewhere between my bed, the spare bed, or one of two sofa beds that we have in the house).

I can’t quite explain why I went off radar, having been so full of good intentions to update you all regularly, especially as you’ve all been so kind with your messages of love and support since I started writing this blog.

It’s hard to break the habits of a lifetime. I’ve spent years believing that people don’t want to hear all the negative things that are happening with my body, and the enormous impact this condition has on my day-to-day life, my feelings, my sense of self-worth. I’m afraid that you might think less of me if I share some of the more embarrassing things with you, or that you might look down on me or pity me. Several people, over the years, have told me that they hesitate to share their own problems with me because ‘it’s nothing compared to what I’m going through’ which makes me feel as though I can’t be a good friend to them. There are things that I can’t do, but I can usually listen, and I always care.

Having said all that, there’s no point writing this blog if I omit or sugar-coat the ugly bits.

The most recent ugliness started a couple of weeks ago. I got an infection in my bladder (a urinary tract infection, or UTI). It happens a lot – approximately every 6 – 8 weeks so far this year – so my GP, local pharmacist and I have it down to a fine art. I have a stash of sterile containers at home, so that I can take a urine sample to the GP (they can almost always see me the same day), and I start IV (intravenous) antibiotics straight away while we wait for results from the hospital lab.

The recent infection was no different. I felt unwell so I took a urine sample to my GP (who saw me just 4 hours after I called for an appointment). Urine dipstick showed clear signs of infection, which is always a relief. Because of the immune deficiency associated with EDS, my body doesn’t always put up a fight against infection. Urine dipsticks test for signs of an immune response, so if my body isn’t trying to fight the infection, the dipstick won’t pick up that there is an infection present.

Anyway, this time the dipstick showed that I had a big old infection. So I started antibiotics from a small supply that I have at home, and the pharmacist managed to get the full supply (enough for 10 days) by the next day. The urine sample was sent off to the lab so that they could identify what bug caused the infection this time, and which antibiotics would be most suitable to get rid of it.

Most of my bladder symptoms subsided within a few days, but it’s taken me much longer than usual to bounce back.

Getting an infection, even just a cold, can really mess things up. It takes a lot of energy to fight off an infection, and energy is something that is in short supply around here. Seeing the effect of a simple UTI has reminded me how precarious my medical situation is, and how little it can take to destabilise everything.

Using energy to fight an infection means that there isn’t enough energy to go around. I’ve noticed that my muscles have been much weaker, which means that they are less able to hold my joints in the right place, leading to more dislocations and more pain. My digestive tract shut up shop for a while too, so I’ve struggled to eat enough. Not enough food means not enough energy. Too much pain means not enough sleep, which also means not enough energy.

The most frustrating effect of not having enough energy has been the effect on my autonomic nervous system. I’ve talked a bit about it before, so I won’t go into the how/why, but the symptoms have included flushing, sweating/shivering, nausea, tachycardia (very fast heart rate), palpitations, dizziness, blurred vision. For a while, the symptoms were pretty awful even when I was lying flat, but they’ve improved enough now that I can sit up for a couple of hours at a time.

I’ve missed out on a lot of things recently – birthdays, get-togethers with friends and family, and even my husband having a week off work. I miss my friends, and I hate having to miss out on so much fun stuff. The weight of all this felt soul-crushing. Disappointment after disappointment has led me to question why I bother with all the effort and expense of keeping my body functioning if I don’t get to do anything fun. Anything at all, in fact.

I don’t mean that to sound as though I want to just give up and die, but my quality of life has been rubbish recently, and I’m frustrated that there are so few effective treatments, if any, to give me any hope for the future.

I’m feeling a bit better now, so I’m starting to take an active interest in things again. I hope that will mean more regular blog posts (hopefully shorter too, for your sakes).

Until next time…