1. Surprises are not for Sick People
Don’t get me wrong, an unexpected email, a letter, even a care package through the post can lighten even the darkest of days, but when talking to my fellow spoonies, the thing that came up again and again was how difficult unannounced visits are. This is for two main reasons.
Firstly, living with a chronic illness takes a ridiculous amount of planning. Most people will see if they’re free for an event, add on travel time, and that’s pretty much it.
For someone with a chronic illness, especially illnesses that specifically target energy reserves, there’s an awful lot more to it.
It’ll take time to rest in order to build enough energy for the event itself, the planning of the event so everything that’s needed directly before, during and after is available, the time it’ll take to recover from that preparation, the travel time, the event itself (both of which will obviously be much more tiring than for a non-sufferer), and then finally the time it takes to rest after the travel and event in order to regain a normal (for us) amount of energy.
It doesn’t really change that much if the people are coming to you either. The steps are pretty much the same minus the travel time, but there might be other tasks that take it’s place,like making sure there’s food in, or clean glasses etc.
Any social activity takes an awful lot of energy and organisation to complete, if something unexpected happens on top of that, or we don’t have time to make these arrangements, it can completely wipe us out.
If we haven’t had time to plan for a visit, then it could mean that some don’t have energy left to prepare food afterwards because we’re so busy trying to rest to catch up, or go to a much needed medical appointment. We either have to cancel our pre-made plans or risk pushing ourselves even further back in order to try and achieve them.
Each sickie will also have a time of day where they have the most energy, and unplanned visits often don’t get the chance to take advantage of that.
In short, it’s a complete nightmare.
Secondly, adapting to unexpected changes is not a ME/CFS sufferer’s strong point, and I imagine it’s similar with a lot of illnesses where cognitive problems are an issue.
Think of it like this: most people minds are like travelling on buses; if there’s an unexpected obstacle in the road they’ll just drive round it, or take a different route.
For sufferers like us, it’s more like being on a tram. We have pre-planned a route and laid a track to take us from point A to point B in order to pay the least amount of Payback possible.
If something gets on the track, it’s a lot more difficult for a tram (and it’s traveller) to change routes. It’s technically possible but it takes time, a lot more effort, (a large winch), and there’s a fair chance you’ll end up paying more for the journey. There are no rail replacement bus services when you’re sick.
There’s also the chance that unannounced visits can lead to the sufferer having two visitors (or groups of visitors) at once. If one person visiting is tiring, two is infinitely more so, and that is why scheduling visits is very, very important.
Most sufferers won’t feel comfortable asking someone to come back another day if they’re not up to a visit (or have another visitor) if someone turns up in person unannounced, and doing so puts them in a very difficult position of choosing between risking offending a loved one, or taking an awful lot of punishment.
It’s a deep seated fear for most sufferers of chronic illness that loved ones will decide that they don’t really want to hang around with a boring sick person any more and stop coming to see them.
It sounds silly, but there are a truly astonishing amount of horror stories of sufferers dealing with exactly this. It makes the risk of offending people very frightening and it can make it extremely difficult to send people away even if that’s what would be best for the sufferer.
Not everyone requires a lot of time in advance to organise visits, so it doesn’t have to mean everything needs to be planned months in advance (although some sufferers will prefer that). Even if you have some spare time on a random day and want to see your sickie, then texting and asking them will give them the opportunity to say yes, or no, or suggest a time in the future that means they can make sure they don’t suffer unnecessary Payback.
2.Timing
Due to the aforementioned constant planning, it helps us to know how long we can rest before you arrive.
If you're running late, just send us a quick text with your new ETA (as long as you can do this safely).
A lot of us have problems with anxiety, so a text will also stop us thinking you've been eaten by bears, swarmed by killer bees, or been hijacked by aforementioned bears and forced to pursue honey at the risk of death by angry killer bees.
3.Cancellations
There is always a chance that a sufferer may need to cancel a visit. As much as we want to see you (and we really, really do), our conditions are difficult to control effectively, and can change at any time, so all too often we may need to put you off until we feel more able.
Please never think that we don’t want to spend time with you. Every time I’ve had to cancel or postpone a visit it’s always broken my heart a little bit, and I know others will feel the same, so please trust that we will see you as soon as we feel able to.
4. Please don’t turn up ill
There's been debate for some time over whether ME/CFS should be classed as an auto immune disease; the vast majority of empirical proof of the existence of ME is based on proved changes in the immune systems of sufferers, though of course there are other theories that put more importance on gut health or stress responses (or a convoluted tangle of all of the above).
Either way, the general consensus is that our immune systems are in some way messed up, and the last thing you want to do to someone with a compromised immune system is bring them an extra illness for them to deal with.
What would take days or weeks for a fully fit person to deal with, could take weeks or months for a sufferer to fight off.
If you or someone close to you has an illness, even if it’s a cold, please let the sufferer know. They may want to postpone the visit until the sickness has passed, or just know in advance to get the anti-bacterial hand wipes and medical grade face masks out.
5.Know your sick person's sensitivities
The overwhelming majority of ME/CFS sufferers will have some kind of sensitivity that means one of their senses is heightened. This may sound like a superhero origin story, but it basically means that certain things are more likely to trigger brain fog, exhaustion and even Emergency Shutdowns.
Part of our cognitive problems mean that we struggle to filter information and it’s incredibly easy to get sensory overload, but there’s often one or two types of information that a sufferer will struggle with specifically.
Personally, my main issue is with noise. I use earplugs or industrial ear defenders every single day at one point or another, because my hearing is so acute now. After a certain point the information stops making sense and I feel a bit like I’m going to scream or faint.
In terms of visits, things that help include speaking quietly and slowly, trying to have only one person speaking at a time (or understanding if I need to pause if there’s another conversation going on in the room), and not having other noises like the radio or TV on while I’m there.
I also try to avoid strong chemical smells like perfume, fabric conditioner and especially aerosols which makes me cough and often give me a headache, so avoiding those (or at least not using them directly before you come in the house) really helps.
Some people suffer more visually and have to wear sunglasses even inside, and prefer that people avoid stripes and patterns in bright colours to stop them feeling odd.
(It’s fortunate that I don’t have a problem with this, because my wardrobe is primarily made of stripes and bright colours.)
Trying to keep the conversation relatively calm will also help prolong time with your sickie, because excitement is one of the most tiring emotions, and the most difficult to control. But I’ll be honest; it’s bound to happen sometimes, especially if your sickie is something of a Tigger like me, so don’t feel bad if it does.
It’s important that sufferers have fun anyway, and it’s not going to harm them, it’s just going to tire them out a bit more quickly.
6.Time Limits
As with cancellations, it’s likely a sufferer might need to set a time limit to your visit to make sure they don’t overdo it, or even cut it short if they reach their limit quicker than they were expecting.
It’s definitely not because they don’t want you to stay longer, or that they’ve suddenly got bored. It's more likely that they've become so excited about your visit they've worn themselves out before you've arrived in anticipation!
I absolutely hate setting time limits and saying goodbye to friends, because frankly I’d be happier if they never had to leave. But my condition doesn’t allow me that freedom so I try to work within those constraints because I know it’ll mean I’m more likely to see them again sooner if I take it slowly and calmly.
I find it’s actually harder not setting time limits because it means that I'm more likely to push myself because I don’t want my friends to leave.
If I can say, " it’s a 20 minute day, today.” at the beginning of the visit then I'm more likely to stick to the limit I've set myself and not push it too far.
Some sufferers will use visual cues to help with this; like a drawn ME-o-meter, or red, yellow or green bracelets to give an idea of the activity level the wearer is at. Some people prefer to use egg timers or timers on their phones to make sure they stick to the limit they’ve set.
Much like my resting ratio, it’s pretty torturous to stick to these timings, but as I’ve stuck to it I’ve noticed that the time I’m able to spend with my friends is (very slowly) getting longer, so it’s definitely worth it in the long run.
7. Know warning signals
Because it’s torturously difficult to stick to time limits when spending time with your friends, and it feels incredibly rude to suddenly ask people to leave because you’re tired, a lot of sufferers will push it too far rather than say anything.
It’s useful to keep an eye out for the warning signals of their illness so you can see when they’re tiring, and ask if they’ve had enough.
This will differ from person to person but there are some fairly good indicators, namely:-
Blanking: if your sufferer starts to lose track of the conversation, to repeat themselves, to have trouble focussing or finding words, or just stops talking for a while, then it can be a sign that their brain is starting to find information harder to process and they’re starting to tire. This is the most likely and easiest to spot.
Avoiding eye contact: some people will also avoid eye contact or shut their eyes when they tire in an attempt to minimise the stimulus their brain is receiving.
Posture Changes: if your sickie starts to slump or wants to lie down it's a good indicator they're tiring.
Panda Eyes: I’m not sure if everyone with ME/CFS gets this, but as I tire my under eye circles (and discolouration between my eyes) getting noticeably larger and darker.
Yawning: it seems an obvious one, but it’s worth mentioning.
If you notice these symptoms, it probably best to check with them if they’ve had enough. They may say they’re alright and want to continue, and that’s fine, they know best, but it’s generally best to check.
Bear in mind that these signs can be very subtle; illnesses like this are caused "invisible illnesses" for a reason, and your sickie may look completely fine to you. (Unhelpful, I know, but unfortunately that's how these things go.)
In any case, try to remember that they are still sick, and if they indicate in any way that they're tiring, to take it seriously.
(A note to sufferers: if you feel awkward or embarrassed about asking people to leave then maybe try prearranging a codeword/phrase or hand signal to indicate you’re flagging. I know it's awkward, but you've got to put your health first.
Plus if you've arranged a comedic signal you might feel better about it: no one's going to get mad at someone who suddenly starts doing jazz hands or humming the Lumberjack Song.)
8. Enough is enough
Once a sufferer starts to flag it's extremely unlikely they'll be up to more social contact that day. It can happen occasionally, but unless your sickie outright says, "I'll see you in x amount of time after a rest", it's best to assume they can't manage more.
Again, it's not that they don't want to spend the time with you, it's that they physically can't without causing themselves damage.
9. Standards may be different
Not everyone has access to the care they really need, or a family that’s able to look after them, so things like housework or getting food in for a visit may have to take a back seat. Sometimes it can literally be a case of choosing between tidying a room or having someone over for a visit.
It’s very likely the sufferer is aware of this, and is embarrassed about it, so it’s best not to bring it up.
If you’re worried that your sickie isn’t getting the help they need, or feel they could do with a hand cleaning, it’s perfectly okay to ask if there’s anything they need help with. They may not take you up on it right then and there (having people tidy around you is really tiring, so they might need to schedule another time), or at all, but they will appreciate the thought.
Similarly you could offer to make the drinks or food, bring food around with you, or check if there’s anything they need before leaving.
10. If in doubt, ask your sickie.
The person who knows most about your sickie’s condition, is your sickie. If you’re worried about misstepping or not sure what to do, then it’s perfectly fine to ask.
11. It is absolutely fine if you’ve done these things.
Lastly, there’s every chance you may have done one or all of these things. That’s fine. Really. It’s not like you read up on what would be helpful and then did the exact opposite, just for kicks. Most of the time there is no guide for you to know what’s helpful and what isn’t; that’s why I felt the need to write one. So don’t worry, we still love you.
Now I’ve given you a few tips, I’ll finish up by giving you an idea of how my visits look.
I can currently manage one home visit of around 30-40 minutes, every month, less if I’m going through a bad spell.
I have an idea of who will be visiting in each month for most of the year now, mainly because I just left most months up for grabs and let people choose them, but the exact visit dates are prearranged a few weeks in advance, to allow me to plan medical appointments around them.
Most people come in the afternoon (that’s my best time), but I have done late morning visits if afternoons are tricky for them. Morning visits tend to be a little shorter as a result.
Through trial and error we’ve found that I struggle having friends in the house after 6pm, even if they’re just with my parents while I’m resting upstairs. That’s when I start winding down for bed, and I need some time to process the day after someone’s visited, but now we know about that quirk we can adjust for it, and hopefully it’ll improve as I do.
I rest upstairs before visitors come. This is mainly so I don’t spend the time I’m meant to be resting watching the front door in excitement.
Mum or David greet my visitors and let them know what kind of day it is (20 minute, 30 minute, etc), and I come downstairs to spend time with them. Once I’ve had enough, I say goodbye and go back upstairs to rest.
I’ve found it’s a lot easier to go back upstairs if you start the visit resting upstairs; it kind of cements everyone minds (including your own) into knowing that upstairs is rest space and makes resting easier.
Goodbyes are also very difficult and tiring, so going upstairs and allowing my parents to take over this part means I don’t have to cut into the talk time to allow for extra-tiring goodbye time.
If my friends have travelled a long way (which is common, as most of my friends are in London or littered around the UK/globe), then once I’ve gone upstairs my parents will spend some time with them before they go. Mum’s very into feeding people, so most get a slap up meal (and a variety of delicious cakes), and potentially a whistle stop guided tour around our local town.
It took me a while to get used to this, because it feels like I should be the one getting to do those things and I hate that I can’t, but with time it’s getting easier.
Sometimes letting them have this time while I rest means I can split the time and see them for a little longer (even if it’s just an extra cuddle) before they go, so it’s definitely worth it.
I can't tell you how much it means to sufferers to be able to see their friends so I hope this guide makes it a little easier for everyone involved, whether you be travelling by bus or by tram (metaphorical or otherwise).
Thank you to everyone who contributed their opinions and experiences to help me put this together. If you think of something else useful, feel free to add it in the comments or email me if you wish to remain anonymous and I’ll add it.
