So your friend, partner or family member has M.E? It’s really crap for them, I know. What can you do to help and support them you ask? Well rather conveniently for you, here are my five top tips:
1. Google is a friend of mine
I’ll be honest, I knew very little about M.E before getting sick and as it is a widely misunderstood illness, I don’t expect friends and family to be experts on the subject by any means. That being said, it can be really tiring to have to explain your condition to everyone all the time, so it always means so much to me when someone has taken the time to google my condition and spent some time reading up on what it actually entails (Quick caveat: Mumsnet style lectures about what your loved one should be doing will likely not be welcome).
Not only does this show a willingness to understand what your loved one is going through, but it has also saved me from having to give my “M.E in a nut shell” presentation. I’ve had to do that so many times that I did once consider putting a power point together so I could just point instead of having to talk. By actually taking the time to do some research it allows you to ask your loved one informed questions about their symptoms; providing them with much needed emotional support and saving people like me having to write boring old lists like this.
2. Please keep the noise down
As I mentioned previously, sensory sensitivity is a very common symptom of this condition. People who suffer with severe M.E often have to spend their days lying in a dark room, wearing noise cancelling headphones and avoiding touch as much as possible. I am more fortunate, my M.E is what they call ‘mild to moderate’ therefore I only seem to suffer from noise sensitivity. I’ll be honest with you, having any of this referred to as ‘mild’ is a kick in the teeth. I did suggest a better term might just be ‘varying levels of ongoing shit’ but I couldn’t get the NHS to sign off on that. Anyway, it turns out that noise is a pretty hard thing to avoid altogether. Not least because of my own ridiculous cackle of a laugh. How does one train oneself to laugh more quietly? Answers on a postcard please.
If you are lucky enough to spend some time around the absolute party animals that we M.E sufferers are, please be conscious that too much sensory stimuli can cause a flare up of symptoms. Just check in with your loved one – is this environment ok for them? Would they prefer to move to a darker/quieter/more comfortable location? I personally can’t cope in cafes; all the banging and clattering of cups and coffee machines on top of all the chatter causes me to start burning up and sends my nervous system into complete meltdown. One of my coping strategies has been to carry ear plugs or noise cancelling headphones on me at all times, just in case. One cannot reasonably expect the whole world to mute itself just for you, but if you could all just talk a bit more softly and only one at a time that would be ace. For my part, I’ll work on my laugh too because that bad boy is loud with or without M.E.
3. Practical help
People with M.E are basically a phone battery that only ever charges to about 10% and must be extremely careful how they use what little charge they have, in order to avoid draining the battery altogether. You know that feeling when really want to read and reply to that message you just got, but you’ve only got 2% batteryleft so you’re not sure whether to just flight mode it? That’s basically how a person with M.E has to manage their health on a daily basis. It takes less than you might think to drain our batteries too - a shower, washing the dishes, walking up and down the stairs – these have all been marked as ‘high level’ activities for me by my M.E clinician.
General household tasks have, therefore, become the sole responsibility of my husband. This time last year I couldn’t stand up long enough to even heat up a bowl of soup some days, so my husband had to become the king of meal prep and bedside table picnics. Thankfully I’m doing better now but I do still find household tasks very tiring, so a lot of it still falls to my husband (or my parents, who I am lucky enough to have just next door now). This can lead to a lot of guilt on my part at watching my husband have to teach all week and manage all the housework on his own. Even when people (very kindly) say that they are happy to help, it can be difficult or awkward to ask. It is beyond frustrating to be housebound and unable to run errands or generally just do most day to day life admin for yourself. That loss of independence and dependency on others can be tough to swallow. When people offer, it takes away the sense of shame one can often feel in asking. These small, practical favours can make the world of difference not only to our energy levels and symptom management but to our stress levels and general wellbeing.
If you’re going out shopping in the car, ask does your friend need anything picking up. If you have any free time during the week, ask do they need a lift to any appointments or offer to accompany them. When you come to visit, have a look around: is there a pile of dishes in the sink? Does the washing need pegging out? Does the recycling bin need emptying? It really can make our lives so much easier when friends and family carry out these small acts of kindness. It makes us feel seen, saves us from using up precious energy and also saves me personally from being buried beneath a mountain of empty cat food tins and empty packets of microwaveable quinoa.
4. Inbox me, hun
Being housebound with a chronic illness can lead to feelings of loneliness and isolation, which in turn can just make your condition all that harder to deal with. You suddenly become cut off from your community – unable to work, meet friends for coffee or dinner. Even talking on the phone takes up more energy than I have most days and it can often feel like you’re starting to disappear. It may sound a bit pathetic but over the last year social media has become my lifeline. Scrolling through twitter or seeing what people are up to on facebook can help to make you feel like you exist outside of your own four walls. It helps you feel connected and invested in the world around you, even if most of what you’re reading is just depressing tales from Trump Land or What Theresa Ballsed up Next. If social media has become my lifeline, then Whatsapp is my daily dose of medication. I don’t think my thumbs have ever had such a work out as they have since I got sick. Texting is a god send for those of us with little to no energy. I love talking, I love catching up with my friends and to be able to do it using little to no energy? Perfect.
If your loved one is unable to get out of the house, keep in touch as much as you possibly can. I can’t stress enough how isolating this illness can be. Even if they aren’t always able to reply straight away or have much chat (again, something that takes a surprising amount of energy), I promise you they will appreciate you getting in touch. Send them funny memes or interesting podcasts they might enjoy. Help them feel connected to the world outside of their home, beyond their illness. Hearing (or reading) a friend's news or even listening to them talk about a problem they’re having helps you to feel normal, still needed, still you.
*Cheeky little validation plea: I LOVED reading your comments on the first blog post. Some were from people I know, some from total strangers but all of them came from a place of love, support and friendship, and I don’t mind telling you, dear reader, it warmed the cockles of my fatigued little heart. At the risk of sounding like one of those YouTubers, erm…if you could, like comment, subscribe? I jest, kind of… but do keep the comments and questions coming.*