ME/CFS Week: It's The Little Things

Any person with a long term illness could tell you that being sick makes big social occasions hard. Often they require a lot of mingling and active participation which is almost impossible if you're in pain or have no energy. The last big event I went to was on Good Friday and I fell asleep in a corner twice. Even small events in big locations like clubs or bars can be difficult for the same reasons.
As a result, people stop inviting ill people some events because they know attendance is unlikely. This in itself can mean that the ill person feels left out and gets to see their friends less often.
That's why I've decided to write today about more inclusive activities for people with disabilities and illnesses. You never know, you might discover some fun ways to get to see a friend who's sick and reluctant to come out much. I've tried to only include activities here which don't revolve around the sick person because everyone else should be able to have fun too and it's less of an inconvenience if the sick person has to cancel last minute.

Picnics

Ok, I live in Ireland so picnics aren't exactly a wise idea all year round. If you live somewhere else (or in Ireland during the 2 weeks of 'summer' every year) though then it's well worth a try. If you plan it in a place that's easily accessible you can get a nice big group together without the hustle and bustle of an indoor event.

Going Out To Lunch/Dinner

As simple and everyday as it sounds, going out to lunch or dinner can really brighten up your day. It doesn't have to be something fancy. Even a casual meal has the benefit of getting someone out of the house, giving them company and it only needs a couple of hours worth of energy to do.

Movie Days

This is one of my personal favourites because it's something that I used to do all the time before I got sick. Go to Netflix or get a DVD, invite a couple of people over and have a movie day. If it's very close friends only then it can be hosted at the sick person's house (just make sure you help clean up afterwards). When the focus is on something else it's easy for someone to drop out of conversation or go and lie down somewhere without attention being drawn to them. Also there's almost no movement involved for the entire day.

Baking days

You can only really do this with around 3 people or fewer, but it's a great way to spend the day. The energy required for baking is significantly lessened when there's another person to help. If you notice your friend beginning to wilt, just pick up the slack so that they don't run out of energy entirely. There's also a built-in rest break as the food cooks, followed by a sitting-around-eating break after.

Bringing Over Dinner

Eat food, chat, maybe watch a film. It only takes a couple of hours worth of energy and bringing over food saves the sick person energy on buying food, cooking, cleaning and travelling. If you're doing it with someone who's reasonably healthy you can take it in turns to bring stuff over, but be willing to settle for takeaway, pre-made food or ready meals when it's their turn.

One-time Classes

Now classes do have one significant downfall: You lose money if you cancel last minute. If, however, the sick person in question is going through a consistent phase of the illness these classes can be really great. Sites like Living Social offer one-time classes at a discount. They require about 2-3 hours of energy and at the very least you'll learn some new skills like pottery or cooking.


You can also make bigger events easier by making sure there's a suitable resting/napping place available nearby and making sure there's a lot of people they know also attending. That's often an inconvenience though so if you're not able to don't worry about it. If you're really at a loss, don't be afraid to ask your friend what they want to do. These suggestions are more about when the patient is unwilling to risk going out or seeing people. I hope these help a bit, bye for now!

ME/CFS Week: Sticks and Stones

We often feel awkward around people who are sick or disabled. Even when it's someone we know well it's hard to find words that sound caring but not pitying. Sometimes even trying not to hurt their feelings can be awkward.

Based off many other similar lists and my own experience, I've compiled this post to give anyone in this position a rough guide to the general dos and don'ts.


Warm and Fuzzy
Probably stuff you're already aware of, but maybe a little inspiration if you're stuck for words.

Jokes. The best medicine is laughter, right? Gentle joking can make things feel normal and significantly less awkward. After all, a disability becomes a part of your life, and what are friends for if not lightly mocking you and your life? If you're not sure if it's appropriate, wait for them to make a joke. If they're joking about it then it's usually fine.

"How are you?" and "How are you feeling?" are very different questions. All too often people with illnesses and disabilities are only asked "How are you feeling?" and it can make you feel defined by your illness. Bit of a downer, you can imagine. It's nice though to know that you care so it can be a really lovely question - just as long as it's not the only question.

Offering help is often a massive relief. It's often really difficult and humiliating to ask for help. Smaller things, like offering to pick up a cup of tea, might be a little patronising. When it comes to washing the dishes or cooking dinner though it can turn a really daunting task into a small inconvenience. If they say no don't worry about it, often it feels good to take advantage of a good day.

Don't let it be the elephant in the room. Ask about it, ask how they're dealing with it and how the recovery is going. If they're uncomfortable talking about it that'll be obvious from their reaction and obviously you'll drop it. During a bad patch though they might feel like it's just whiny to bring it up, so if you bring it up instead it's a big relief.

Draw things, write things, give small gifts. It's incredibly lovely to look across the room on a bad day and see evidence that you're not going through this alone. Especially if it's been a while since contacting friends has been possible. From a personal stand point these are the best things my friends have done for me over the years. It's so easy and cheap to do too!



Not So Warm and Fuzzy
Again you could probably guess. A couple of things here though are sore spots that seem entirely benign to everyone else, so it might be worth a read.

Normally, people say "You look well" to mean "You look good". However, when you've heard too many people say "But you don't look sick" it can take on an entirely different meaning. To be safe, it's usually better just to say that they look good¹.

Try not to offer medical advice. When a sick person shows a new symptom they may begin to panic and it's hard not to try to comfort them with stuff like "Oh that just sounds like x. I had that ages ago, you'll be fine in a few days". The simple fact is that their body won't work the same way as yours and often things present slightly differently, or could even just be a new symptom of ME/CFS (even if they've been sick for years). The easiest way to manage it is "It could be serious, it could be nothing. If you're concerned go to your doctor". If you're a doctor then feel free to offer your medical advice, because using the above phrase would be mightily unhelpful and you might get fired.

When you care a lot about someone it's not pleasant to see them in pain. "It makes me so sad to see you like this" is a phrase often used in such situations. Unfortunately it mostly has the affect of making the sick person feel like they should avoid telling you if they're feeling icky. They probably care a lot about you too and are afraid of causing you sadness. Unless they hate you. In that case it might actually make them feel better.

If the person who is ill is a close friend this probably doesn't apply to you. If they're an acquaintance, however, listen up! Proximity to sickness is (thankfully) a new thing. You want to make the person feel better but you don't know them well enough to make them feel better with their favourite shows or whatever. My advice is this: act like it's the flu. You don't say stuff like "Let me know about the test results, ok?" when it's the flu. Stuff like that. It's just a bit invasive is all.

"Are you ok?" is an appropriate question when someone has gone quiet and may or may not be in pain. It's not really warranted after a small whimper and it's downright useless when someone is obviously in agony. Illness causes pain and chances are they're used to the small jolts when they're doing small tasks. Ask after a couple or if it seems bad. If it's gotten to the point of agony ask instead what you can do to help because clearly they are not ok.

This is another one that comes with time. Often people with illnesses test their limits at the beginning and this is perfectly natural. As time passes they will learn what they can or cannot do. This makes it really frustrating when people tell you that they're not able for something that they know they can do. Kind of like if I told you "Don't bother walking to the shop, you have a cold" you'd be a tad indignant about it.


So there it is. Maybe you saw something here that you didn't know before, maybe you didn't. Either way I hope it was at the very least interesting.
Of course, for all these things, it really doesn't apply if you're living with someone who's ill. In that situation you have a much better idea of how things have progressed and what they like or dislike. Anyways that's about all I have the energy for. Until tomorrow!

¹ The same goes for saying "You don't look sick". You may mean it as a compliment but it can be taken the same way as the other people saying it to imply that they don't believe they're sick.