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 (because neither am I!). 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 personally 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 onlygot 2% left 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 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 facebookcan 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 Ballsedup Next.
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 articles, 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. So at the risk of sounding needy, keep 'em coming!*
5. Be flexible
M.E, like many other chronic illnesses, is a fluctuating condition. No two days are ever the same and you literally never know how you’re going to feel from one day to the next, even from one hour to the next some days. Exciting, right?! What fun! I’ll give you a scenario to help explain more clearly: Your friend invites you to their house for brunch in two weeks’ time. Yes, you say, that sounds like something both enjoyable and manageable. See you there, chum! When the date is approaching you are careful to pace all your activities and plan carefully so that you have nothing too taxing in the days leading up to the event. You do everything right. Then you wake up on the day itself and feel like you have the world’s worst hangover, and that also maybe someone ran you over with their car without you noticing. There’s no way you can go out, so you text your friend to cancel. Cue the anxiety!
* Fun fact: one of the ‘predisposers’ of people who get M.E is that we are mostly overly anxious little sods so you can see how needing to frequently cancel plans can really be an issue*
I am lucky that I have lovely, understanding people around me who never make me feel bad if I need to cancel last minute or repeatedly turn them down. If your friend is suffering with this illness, let them know that it’s ok if they need to cancel at the last minute. Your friend really wants to see you, it’s just that their body has other ideas sometimes. It’s important to let them know that there is no limit to your invitations, that you won’t give up on them. The type of activities you do together will inevitably have to change (think less cocktails and dancing, more tea and bed chats) but there are plenty of ways to make activities more adaptable so that they can join in – keeping it short but sweet, choosing a location with soft seating, offering to come to them – little things that can make a massive difference. Even then, they won’t always be able to make it but they will always be so happy and thankful that you asked.
If you made it this far, congratulations! You are now ready to support any and all loved ones with M.E. Hurray! In all seriousness though, thank you for reading. It means a lot to me that you would take the time to read this and be willing to learn. Equally, I’m happy to learn from you too! You’ll find out what works for the people in your life and develop the best tools to help them, but I hope this has been a good starting point if – like me and my family – this is all new territory for you.
As ever, onwards and upwards!
M.E, Myself and I…
If you’re reading this and you’re a relative or a friend you can skip ahead since we can assume you already know me fairly well. If you’re not then hi! I’m Lorna. I’m a 31 year old living in the North West of England with my husband and my cat. Until recently I was all of the following:
Then after three years of increasingly poor health I was diagnosed with M.E in August of last year, and suddenly all of those things I loved were just taken away. Life as I knew it came to a complete halt. It’s funny (in a ‘makes you want to cry’ sort of a way) because obviously I am still a qualified teacher, I still have an interest in or a love of all of the above but when you can no longer partake in them it feels as though they no longer make up the sum of your parts. They become part of the ‘old you’; the pre-illness you. It forces you to re-examine who you are, outside of what you do and there’s a sense of something akin to grief for the loss of your ‘old self’. You suddenly have to re-learn who you are now that all of those identity markers have been taken away. It’s more than a little bit daunting.
Until my diagnosis I had been living in Italy with my husband and working as a teacher; a job that I loved and worked bloody hard to get. I had (still have) a wonderful group of friends in Italy and was really quite happy in the life we had created for ourselves there. We worked hard, we travelled, socialised, enjoyed all the culinary delights that Italy had to offer. But poor health was making it increasingly difficult for me to maintain any semblance of a functional, normal life outside of work. I was barely making it through the working day and started having to spend my evenings and weekends in bed feeling utterly exhausted.
For a long time this was written off (by me and medical professionals) as stress; working in a high pressure job, undertaking my post-grad whilst simultaneously planning a wedding was stressful. But eventually it got to the point where I was in pain daily, had constant flu symptoms and couldn’t even walk up a flight of stairs without needing a rest and I simply couldn’t carry on. After two years of tests, referrals and tears in my GP’s office I eventually, FINALLY got a diagnosis. The relief was immense. At last I had hard proof that I wasn’t just being soft or not coping with the demands of life. I had an actual, medically-certifiable condition. Now I had answers I could finally receive the support and treatment I needed to begin my recovery and return to full health, right?
A year later and I’m still asking that question.
M.E, Myself and Myths!
Before we go any further I felt I should clarify a few things about my condition because I know it is still widely misunderstood. I’ll start by telling you what M.E isn’t:
M.E, Myself and the Medical Stuff...
M.E stands for Myalgic Encephalomyelitis but is also known as Chronic Fatigue Syndrome or CFS. To be completely honest the name CFS grates on me a little because there is so much more to this condition than just the fatigue (plus M.E just sounds fancier doesn’t it). Anyway, M.E (ooh, fancy!) is a systemic neuroimmune condition that affects an estimated 250,000 people in the UK alone. There is currently no known cure. The following is a list of just some of the common symptoms:
That last one isn’t medically proven or anything, but I think a quick glance at my Instagram would be proof enough.