I came across this fantastic list of guidelines for how to live successfully with Myalgic Encephalomyelitis and just had to share it. It's so refreshing to read a light-hearted account of life with this horrible illness. I'll be sharing this humorous look at life with M.E. below as well as explain the realities of each point in more detail to help with raising awareness. There's also an image you can share on social media.
So here they are, The 11 Rules For Having ME Successfully:
Do not consider having M.E. unless you have a downstairs toilet.
So true, right? Stairs are a nightmare when you're living with M.E. They're exhausting and cause severe muscle fatigue and pain as well as shaking and weakness which can all last for days, weeks or even months after. It's a good idea to avoid stairs as much as possible.
In order to have M.E. successfully you should acquire a cleaner, gardener, cook and a general handyman. If this is impossible, you should find a rich, devoted, non-talkative partner with few outside interests.
As funny as that sounds, it is quite accurate! My quality of life has improved so much since my sister became my full time carer. She takes care of the house and cooking, my medications and supplements, anything I need throughout the day and comes quickly and quietly whenever I need her, leaving me alone the rest of the time so I can recover in a quiet and peaceful environment. I wish I could clone her so all people with ME had somebody as considerate and caring as her!
It is essential that you budget and plan for M.E. as you will require an answer-phone, tumble dryer, dishwasher and many other supposedly 'luxury' items.
If you have somebody to take care of things for you, then this is not much of a problem, but for those with M.E. who live alone and can no longer work, financial issues can become a huge burden. Being too weak to handle most chores in the house, having these "luxury items" can really make life easier - unfortunately they often cost more than an unemployed person can afford.
It is advisable to get rid of dependent children (unless very helpful) and to ask elderly relatives not to have any major crises during the course of your illness.
My hat goes off to anybody who is raising children while dealing with this debilitating illness. Myalgic Encephalomyelitis drains all your energy and causes such severe sensitivities to noise, movement and light that having children around can become torturous. I cannot imagine being torn between your love and desire to spend time with your children and the dread and fear that comes from knowing each moment spent with them is causing prolonged deterioration. It's heartbreaking.
Any crisis that comes up can be a huge blow in the road to recovery, because every bit of stress only amplifies all the symptoms. That is why families of people with ME need so much support.
Play dates away from home for the children. Meals cooked and portioned for the freezer. Chores taken care of very quietly and carefully. Even the carer in the home needs a break regularly and will need much emotional and practical support.
Pets are a help, but they must be self expressing and quiet. Furriness is a comfort if you have no allergies.
Pets can bring so much comfort, companionship and joy, but will need to be cared for by others too. Taken for walks, visits to the vet, brushed, washed... a person with Severe ME might thrive with a healthy pet for company, but will struggle to meet all their needs without help.
All visitors should be advised to bring their own food (and some for YOU too). Overnight visitors should bring bed linen and take it home to wash.
For those with ME who can still tolerate visitors, it would actually be a huge help if meals and sleeping arrangements were handled by the visitor. Your company alone, the conversation and needing to be aware, focused and engaging, will be exhausting and draining - there will be no energy or strength for cooking, cleaning and making beds.
Even if the person with ME feels like they can manage it, if it's not something they already manage to do daily, then it will cause further deterioration. Anything you can do as a visitor that alleviates their load would be so much appreciated. As long as it's done quietly and carefully so as to not cause sensory overstimulation.
Patients should buy a new dressing gown fit for public viewing.
When you're mostly living in bed or on the sofa in a reclined postition, clothing becomes a matter of comfort and necessity, not fashion trends or making a statement. A person with ME might not be able to get dressed regularly and might wear the same outfit for days or even weeks.
Lifting arms might be painful, standing up might be exhausting, and buttoning a shirt might be impossible with weak fingers and muscle tremors. Skin might be sensitive and sore making clothing uncomfortable and painful to wear. Many of us resort to comfy, loose fitting pyjamas for everyday wear.
Before embarking on this illness, the would-be patient should make a badge which says “Looks alright, feels awful" and a selection of explanatory leaflets giving details of the illness.
The strange thing about this condition is that people often look fine when they're actually feeling awful. There are no external signs of illness if the person is washed and dressed and able to get out of the house, you might have no idea they're ill, but their efforts to appear normal for a few hours will cost them days, weeks or even months of deterioration with flaring symptoms.
Being able to endure such severe symptoms with no outward signs is hard to wrap your head around if you've never experienced it yourself, but it is something that people with chronic illnesses do every day. Chances are you know quite a few people who are battling like this on a daily basis, just trying their best to appear healthy and okay while suffering horribly just to get through the day.
The latter should be carried and distributed on all possible occasions, to protect from any misunderstandings, ignorance and downright nastiness.
People shun and criticise what they can't see or don't understand. Healthy people will avoid or even fight what makes them uncomfortable. This means that people with invisible illnesses and disabilities are often victims of stigma and gaslighting. Having some information about one's condition on a leaflet might help a struggling person get through those tough situations when the people they're dealing with fail to comprehend the gravity of their experience and severe symptoms make it hard to explain things on the spot.
The person with M.E. (as the most restricted member of the household) should establish absolute authority over the TV remote control.
Since noise and light cause such intense fluctuations in symsptoms, it is important that the volume and brightness of the television be controlled by the person with ME. Flashing lights, changes in brightness or volume, and even background music can cause all sorts of nasty symptoms to arise or amplify existing ones. Things that wouldn't even register or me noticeable to most people can be very uncomfortable or even harmful to somebody with ME. Being able to control one's own environment is a necessity when dealing with such a debilitating illness.
The person with M.E. should let it be known that his/her needs will change from day to day without notice, and family members who help inappropriately will get their heads bitten off.
Unfortunately, horrible symptoms have a habit of putting one into a horrible mood. People who are trying to deal with torturous symptoms find communicating very difficult and getting one's needs accross can become a very frustrating job. Having your head bitten off is not always due to some error you've made, it might have nothing to do with you.
The person with ME is just struggling to get through that moment. Don't take it personally, don't judge or hold resentment, take a deep breath and just let them get through it in whatever way they need to.
Sometimes though, you might have the best intentions as a carer, but if you cannot help quickly, quietly and very carefully at the right time - then you're likely to cross over the boundary between help and hurt. If you cause stress or emotional upset then you're likely doing more harm than good.
Having somebody around who can help alleviate symptoms and control the environment when the person with ME is unable to communicate or do things for themselves is a huge blessing.
It is actually quite a funny list until you realise it is unfortunately also very true. I'm certain that people with all kinds of chronic conditions would be able to relate to and benefit from these guidelines - so please do share this post!
Credit: The list of 11 Rules For Having ME Successfully was originally posted in the Shropshire and Wrekin ME Support Newsletter. I created all the graphics on this page and the commentary under each heading is my own.
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