The idea of being bedbound means different things to different people. In its most pure form, it means that someone is unable to get out of bed at all, and may need to lie flat for all or most of the time. More commonly, it is used to describe a situation in which someone spends the vast majority of their time in bed, though they may be able to go to the bathroom or transfer to another place to lie down.
Chronic conditions often fluctuate, meaning that while there are times when I can leave the house, and drive myself to a hospital appointment or other appointment and back, these activities tend to have repercussions, especially if I push past those warning signals that tell me I should be in bed! I'm 30 years old, and have lived with these conditions all my life. Of course I push past my warning signals sometimes!
I had a fun, productive and busy week last week. I thought that I'd paid for the excess movement when I had a 'crash day' midweek and could do nothing but sleep, but apparently not. I slept for 14 hours on Saturday night, and then spent most of Sunday horizontal on the sofa. Today has been much the same - horizontal on the sofa, packed around with pillows and duvet and hot water bottles; drugged to the eyeballs in an attempt to get control over the pain, nausea & vomiting and dizziness. I can't tell you how many attempts I've made at writing this post through the haze of medication that destroys any clarity of thought.
Ideally, on days like this, bed is the place to be.
In order to stay in bed (my snuggly prison, as my friend M calls it), I need certain supplies. When I was last properly bedbound in May of this year, I could crawl from my bed to the bathroom (though I collapsed and hurt myself a few times) but there was no way that I could make it downstairs. So I came up with the idea of having a 'snack station' for times like this.
The Snack Station is not for midnight feasts (well, maybe it is sometimes), but is a selection of snacks that I can tolerate even when my tummy is really playing up, and which allow me to remain fed and watered without getting out of bed. Several of my medications have to be either dissolved in water or taken with food, so it's important that I have food and water so that I can take the medications I need.
UHT skimmed milk (in small cartons - 500 ml or less)
Nesquick instant milkshake powder (this is fortified with sugar and vitamins)
Nutrigrain bars (low in fat and fibre, but relatively high in energy, and some contain pureed fruit)
Pretzels (low in fat & fibre if you get the right brand)
Snack-a-Jacks (come in lots of different flavours - low in fat & fibre)
Snack-size cartons of fruit juice (some have added vitamins and minerals)
For those of you in the US, Orgain is a great option as an organic liquid meal replacement. Here in the UK we have to put up with Scandishakes, Fortisip, Fortijuice, Forticreme, etc. You can ask your dietitian.
Dycem (sticky plastic stuff for getting a grip with weak hands)
I have been bedbound, or virtually so, for up to 6 months in the past. If that happened again, I would invest in a small kettle, microwave and refrigerator to live by my bed.
In the shorter term, I can ask Richard to bring thermos flasks of hot water and cold water upstairs before he leaves for work so that I can make myself hot drinks (bouillon and ribena are good; instant breakfast and cup-a-soups are edible in an emergency).
This list would also make a handy travel list of things that can be carried relatively easily and give a guaranteed supply of food and drink that don't provoke symptoms. Trying to find a shop in a new city or country (especially if you don't speak the local language) that will cater for a very restricted diet can be stressful. Especially if your blood sugar is tanking with every step you take!
So, it looks as though I'm confined to the Snuggly Prison for at least the next couple of days. I'm not miserable about that (it was worth it to be able to get my hair cut) but it's good to be prepared. Look out for pictures once I've set up my bedroom Snack Station!
If I'm stuck in bed for longer than a few days, you may also get some pictures of a bedroom Craft Station, but hopefully not. I have grand plans for the study...
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J