The experience of having regular visits from hospice nurses has been a wonderful one, for the most part. The nurses who visit me are skilled, compassionate, intelligent, kind, caring, and just plain good at what they do. Considering I am their first ME patient ever, things have gone extremely well. Several individuals at hospice have taken hours of their own personal time to educate themselves on true ME and how to meet my needs in the best possible manner. Still, it has been a learning process, for all of us. Even I wasn’t entirely sure what to tell them at the start – after all, I’d never had this level of care before. It would take us some time to figure out what works best for me. That said, we pretty much have it down now, so I thought I’d share some of what we’ve learned. Hopefully reading this will make someone else’s learning period just a bit shorter.

Let me preface this by pointing out that each ME patient is an individual. No two patients will have exactly the same mix of type and severity of symptoms. It is important to sit down and talk with the patient and, if possible, his or her carer to go over what they think they need from you. This is especially true if you are entering a situation where regular visits will be made. Ignoring a patient’s needs will cause them tremendous amounts of unnecessary suffering, and will soon result in their sharp decline. That said, let me list the advice I believe to be most universal.

Visit Timing

Most ME patients follow a widely irregular schedule. Many experience sleep reversal, sleeping best during the daytime while spending nights awake. Others may sleep days one week, nights the next, and days again the following week. Still others slip in and out of sleep both day and night, while for others sleep is so rare they simply grab it whenever the body allows. Regardless of the schedule, sleep is extremely important for the ME patient. Because of this, it is important to ask when the best time is to visit. Also, try to be as flexible as possible. They probably won’t be able to keep the same time for every visit. The more flexible you can be, the less chance your visit has of intruding on the extremely important hours of rest each ME patient needs. I realize a nurse’s schedule is generally full to overflowing, but try to be as flexible as circumstances allow.

In addition to flexibility in initial scheduling, if you arrive and the patient is clearly having one of their worse days, it may be better to leave and reschedule yet again. There are some levels of suffering where physical examination and treatment become next to impossible, not to mention torturous to the patient. At those times, it’s wiser to reschedule for a better day than try to push forward despite such intense suffering.

Light

Most severe ME patients live in close to total darkness. Obviously, medical professionals need some level of light to perform their work safely and successfully. At first, we addressed this issue by making a flashlight available. Juggling a flashlight along with needles, lines, stethoscopes, etc can be tricky, but my nurses pulled it off (much to my amazement). Later, I came up with the idea of using clip-on reading lights (like for books). We have two. One is clipped to a small folding table the nurses work at near the bed. The other is clipped to the bed rail / side guard on the bed itself. My nurses use the former while messing with my morphine pump and filling out paperwork, and the latter while sticking needles into me or examining my skin.

The most important thing with any source of light is to never shine it in the direction of the patient’s face. I cannot stress this enough. Even if the light is all the way across the room, shining it towards the patient’s face will cause indescribable pain and could trigger a sensory storm (a form of mild seizure some ME patients experience in response to sensory overload). Several nurses have unthinkingly made this mistake with me, and the effects lasted long after they left. Always, always, always be mindful of where your light is shining.

Noise

Most ME patients experience noise sensitivity in addition to their other sensory issues. Many severe ME patients wear noise reducing headphones around the clock. Please understand these headphones are a necessity. The patient is not listening to music or trying to block you out. They are simply reducing the normal volume of your voice and surrounding noises to a level more easily tolerated by their struggling body. While it is important not to speak too loudly, keep in mind if the patient is wearing headphones, you may need to speak at a normal volume just to be heard. Make a habit of asking the patient during your first few visits if your speaking volume is okay. They will appreciate your concern and willingness to adjust. Also, make sure your cell phone and all other noise producing devices are turned off or put on silent! I cannot stress this enough. The sudden jarring sound of a ringing phone can have disastrous effects on the patient’s health.

Examination

Due to the same sensory issues mentioned above, most ME patients experience any physical contact as painful, sometimes extremely so. As you can imagine, this can present problems when performing a physical examination, taking vitals, etc. ME patients are aware that some level of touching is necessary to survive. Our carers must touch us to help with basic needs, and you must touch us to meet medical needs. We accept that, and are capable of gritting our teeth and getting through it. However, it is important to keep all physical touching to an absolute minimum.

Do not touch the patient conversationally. Also, consider what aspects are truly necessary in the physical exam, and what can be skipped or done only occasionally, instead of every visit. If you can get by listening to their lungs in just one or two locations, do not listen at four, five, or six locations. The same is true of listening to the heart and gut. Do you really need to touch their feet to examine them for edema? Or will a visual examination suffice? When taking blood pressure, spend some time considering how you might make it less painful and intrusive. If you can get by taking their BP on their lower arm, it will probably be less painful and require less movement than using the upper arm. Only one nurse has offered me this option, but it was much appreciated. Another nurse offered to allow me to use my own electronic wrist cuff after noting its accuracy one day when we used it to confirm a BP that had been extremely low and difficult for her to hear. My point is, consider what is truly necessary for each individual patient, and don’t put them through unnecessary pain and suffering.

Movement

For most ME patients, every movement hurts. Moving an arm a single inch can sometimes be excruciating. Even when that movement is assisted by others or by devices, it still hurts, a lot. Be conscious of this fact, and do not ask the patient to move any more than is absolutely necessary.

Scented Products

Many severe ME patients are physically overwhelmed by even mild scented products. Others have a bad reaction to many chemicals used in perfumes, cleaning products, etc. Never wear perfume when visiting an ME patient. Also, try to use unscented deodorant, as well as any other products you might use. Even the smell of “unscented” hand sanitizer can overwhelm an ME patient. Consider applying it outside their room and waiting for it to dry before entering. This can spare them the worst of the scent and help the examination proceed more smoothly.

Communication

For most severe ME patients, communication is exhausting, difficult, and at times, impossible. We may struggle to process what you say to us and to piece together our response. We may grasp for words, use vague descriptions, or forget what we are saying mid-sentence. We may stutter, stumble, forget things you’ve told us, or even forget your name. Please be patient with us. We will have good days and bad days. Our communication abilities vary from day to day, and even hour to hour. Some patients use gestures or written words rather than speaking. Others use electronic devices at times to speak for them. Don’t let these things scare you off. We’re still in here; we still want to communicate. It simply takes more effort than when we were healthy. Be patient, and try not to interrupt. While we may pause and look to you to complete a sentence when we are unable, interrupting us while we’re still trying to talk will only frustrate us and cause us to have to start all over in our train of thought.

A quick aside here: because communication is so difficult and exhausting for us, I do not recommend asking ME patients themselves to educate you or others about their illness. While patients greatly appreciate a willingness on the part of medical professionals to learn about our illness, explaining it ourselves isn’t always doable. ME is such a vast illness, covering so many body systems and symptoms, it can be difficult and exhausting to attempt to organize an explanation on the spot. Instead, ask your patient (or their family) if they have any resources they’d like you to check out in order to learn about their illness. Personally, I strongly recommend the website hfme.org, or the book “Caring for the ME Patient” by Jodi Bassett, which is an excellent collection of the most important articles from the hfme website in printed form. Information on ordering the book can be found here (it is also available on Amazon). My care team has read this book and found it incredibly helpful and informative. I enjoy the Kindle edition myself, which allows me to quickly search for individual symptoms as they arise or become more predominant to see what information or advice the book contains about them.

Visitors

Occasionally, a situation arises where you may need or want to have more than one person in the room with your patient. Always let the patient know in advance if this will be necessary. Having multiple people present is extra exhausting, and an ME patient may need to spend extra time resting and preparing for the visit beforehand if this will be the case. Always ask permission to bring someone extra (such as an intern) if it is not a necessity that they be there. While many ME patients are happy to provide an example of this little known condition, sometimes we simply aren’t up to having multiple people present. Never show up with an extra person unannounced, if it can be avoided.

Remember to do as much educating and talking amongst yourselves away from the patient as possible. At the side of a severe ME patient is not the right place for interns or new nurses to practice and learn new techniques. Remember, your presence alone places our bodies in distress and worsens our symptoms. We will spend days, weeks, or even months recovering from even the best run visit. Don’t add to that by spending loads of extra time in the room educating someone else. That can and should be done outside the patient’s immediate environment.

Conclusion

Treating the severe ME patient can seem like a daunting task. There are many important things to plan for, and you must remain mindful of even the smallest actions while in the patient’s room. And, should you be unlucky enough to witness the patient on one of their worst days, you will likely carry the image of that suffering with you forever, as few illnesses can match the level of pain and suffering ME is capable of producing. But in the end, you will walk away with the knowledge that you carefully and effectively treated a patient most health professionals ignore.

Most severe ME patients have no access to health care whatsoever. You can be part of the change we need. You can bring hope and relief – at whatever level possible – to individuals whom studies have found have a lower quality of life than sufferers of kidney failure, dialysis, chemotherapy, AIDS, and just about any other major illness in existence. Learning to treat someone with so many sensitivities and symptoms can be difficult and frustrating, but you’ll never find a more grateful patient.

I want to personally thank every nurse who reads this for taking time to learn, both about this illness and how best to interact with those who have it. It is nurses like you who bring credit to your profession. It’s nurses like you who make the biggest positive difference in patients’ lives. I wish every ME patient had access to nurses like you. Please spread the word about this terrible and hugely misunderstood disease. Thank you for your time and attention, but most of all, thank you for caring!