You know you have a chronic illness when: You look back at your past month and realise that the only people you saw outside your family were your team of health professionals.
Now don’t get me wrong, I like my Doctor, Naturopath, Chiropractor and Physiotherapist. But a month where they are the only people I see apart from the Knight and maybe my parents is sad. It unfortunately happens far to often. But trying to have a social life when you have a chronic illness is hard.
Having a good chin wag and a laugh is so good for mental health. It is one of best therapies for depression and reducing stress. But going to a social function will have its toll. The FibroTroll will expect payment and I have had to learn how to reduce the damage.
Over time, I’ve worked out a few things. I can’t do an evening function unless I am in control of what I eat and drink, I don’t stay too long, I can sit down and I am able to do nothing for the next two or three days. This means I don’t do washing, I don’t have someone come for coffee, I don’t read anything that needs a lot of brain power. I need to be able to have a bath in Epsom salts, have a session in my HBO2 chamber, have easy to prepare or ready-made nutritious food that at the moment is GAPS approved. My priority has to be me. If it’s not, then I can be sure that the FibroTroll will invite the family over and I’ll end up with enforced rest for days or weeks because I can’t get out of bed.
When I have an invitation to anything, whether it’s a night function, or a birthday catch-up in the park, I have to pace myself. I decide if it is a priority. (I’ve got pretty awesome friends, so the vast majority of the time, then the invite is a priority.) This then means that nothing is scheduled for the day before or after. Depending on the time of day, I then schedule my bath and HBO2 time. I work out if I need to bring a meal, and what the other meals will be around the function. I work out what I will wear – checking if the venue will be air-conditioned or outside in the sun. I allow for travel time (even being a passenger is not rest – especially when your vestibular system is playing up). I decide which bag/s to bring based on how many layers of clothing I need and/or my own food. Finally, I battle with my ego about bringing my cane. Nowadays, I need it most of the time, especially when there’s a chance of stairs or uneven ground.
There is a common misconception that pacing yourself for a social function is just a matter of sitting down while you are there and having a nap when you get home. While those things certainly help, there is far more to it.
To help you out, I’ve made up an imaginary invitation to brunch at 10:30 am on a Sunday.
The week leading up to Sunday:
- Call cafe/restaurant and see if they can cater for me
- Cook extra meals during the week so there’s some food in the freezer
- Order fruit and vegetable delivery or write shopping list for the Knight to do during the week or on Saturday
- Sort out which loads of washing are the most important, and which can wait another week
- Ensure any appointments are no later than Thursday (with the exception of my chiropractor, I find most appointments energy draining for a day or two afterwards)
- Have at least 3 Epsom salt baths, and 5 HBO2 sessions
- Ensure adequate sleep
- Don’t introduce any new foods or re-try suspect foods
- Choose outfit – check BOM (Bureau Of Meteorology) for weather predictions
- Shave legs and underarms if outfit needs it
Saturday:
- Let chickens out and feed them, watch their silly antics for a little while
- Vegetable juice
- Yoga/Tai Chi
- Make and eat breakfast (Knight will probably make breakfast)
- HBO2 session
- Knight makes lunch
- Keep energy usage low – both physical and mental
- Make sure not to sit too long without stretching and change activities (TV, read, crochet etc.)
- Have a soak in Epsom salt bath and wash hair
- Knight makes dinner or use one of pre-made meals from freezer
- Early night
Sunday:
- Hope like hell that the FibroTroll is playing nice – despite all the prep, sometimes the Troll is just an arsehole.
- Wake up the Knight in tarnished armour to let the chickens out and give them breakfast
- Vegetable juice
- Yoga/Tai Chi
- Eat something light if the cafe can cater – because waiting until 10:30 or 11 am for food is not going to make the FibroTroll happy, a full meal if not. The fantastic Knight will make this while I’m doing my Yoga.
- Wash and study face – good day and casual affair – no make-up because it uses energy. Less good day – on goes the make-up so that people say “you’re looking well” instead of “are you sure you’re up for this?” Crap day – no point, because I’m not going to make it down the stairs let alone to brunch 🙁
- Get dressed – now lets say its summer, so it’s hot outside and the sun is going to be coming through the window on the way there – too hot for jeans, but the cafe will be air-conditioned and due to my poor thermoregulation, within a few short minutes, I will start to freeze and then my pain levels will sky-rocket. So a long light dress and I pack 3/4 length leggings and a cardigan in my bag ( on the plus side – don’t have to shave my legs!). Enclosed flat shoes so my toes don’t get cold
- Put band-aids on ankles and anywhere else the shoes might rub even if I’ve worn them in, in case the Troll decides to be the aforementioned arsehole and give me blisters anyway.
- Pack something to eat if the cafe couldn’t cater (and make sure I have snacks anyway because sometimes they are wrong).
- The Knight drives to venue.
- Enjoy myself at function, hope that the noise isn’t too loud, that the temperature is ok and that they don’t feed me something that triggers my IBS.
- Keep an eye on the time – super hard when I’m having fun.
- Dance around the “How are you?” question.
- TRY to leave before I hit the wall. – This is possibly THE hardest thing to learn to do as it’s really hard to predict. Loud noise and being too cold will significantly reduce the amount of time I can be anywhere.
- Knight drives home.
- Depending on what I could eat, I may need lunch.
- Knight prepares the HBO2 chamber and I hop in for at least 90 mins. I do something that doesn’t require too much thinking and no noise (probably a game on my phone or crochet.)
- Have a bath with Epsom salts.
- Knight makes dinner or we have a pre-made meal from the freezer.
- Maybe watch TV.
- Early night.
Monday (and possibly Tuesday):
- Knight gets up to feed chickens, make juice, make breakfast and take something out of the freezer for lunch and dinner and prepare the HBO2 chamber.
- Sit
- Lie down
- HBO2 session.
- Hopefully make my own lunch and I won’t have to make the knight come home to prepare lunch.
- Sit
- Make sure not to sit too long without stretching and change activities often (TV, read, crochet etc.)
- If not too bad have a bath – otherwise wait for knight to come home.
- Put pre-made meal in the oven.
- Lie down
- Sit
- Maybe feel up for watching TV with the knight.
- Try very hard not to feel guilty (this is a work in progress.)
If I don’t do this, I’ll probably manage for a day or two. I’ll do some housework, I’ll hang out with the chickens, study, research etc. BUT I have learnt from experience that if I don’t take the day or two I need to recover then I’ll almost always have a flare.
And that will mean lying in bed most of the day, needing help to and from the bathroom, taking the maximum amount of medication that I can and taking several days to a week or more to recover.
If I am disciplined and do follow the plan, then by Wednesday I should be back to normal energy and pain levels. Having one or two days where I only take care of me, ultimately works out better than having a week where I can’t even do that.
For people who work or have children or have dogs that need walking or any other commitments recovery is even harder.
Planning rest time and meal planning is your friend. Try to have nutritious meals in the freezer and try to take it as easy as possible. Can a load of washing wait an extra day or two? Can a friend walk the dog? Can you take 20 mins to soak your feet in Epsom salts? Recovery from any extra stress – including fun stress – takes longer if you don’t take it easy.
