Chronic Invisible Illness and Frustration with Medical Professionals (Or A Letter to the Rheumatology Department of My Medical Group)

Dear Doc-

You should know that you're not the first Rheumy I've seen.  I've had a Rheumatologist as a part of my medical team since I was 15 years old, nearly 25 years now.

In those 25 years, I have undergone many pressure point exams, many blood tests (and repeated blood tests), and many movement exams. I've had high SED rate results and a positive ANA for about 15 years.

I've watched multiple family members (including my mom) deal with different Autoimmune and Connective Tissue Disorders.

In the past 15 years, my list of symptoms has grown to include not only the Fibromyalgia symptoms, but also Joint Hypermobility Syndrome/Ehlers Danlos Syndrome, hypermobility type, Reynaud's Syndrome, as well as symptoms commonly associated with autoimmunity. Many of the symptoms I experience also show up with Fibromyalgia, such as brain fog and cognitive issues, chronic widespread pain, fatigue and general exhaustion, and GI distress, so I can understand why you may easily just categorize the experience of the symptoms as part of my Fibromyalgia. Except these symptoms have become progressively worse and the presentation of other symptoms have surfaced as well: unexplained fevers, chronic nausea, constant GI pain, kidney problems (and frequent flank pain), skin problems (including the "butterfly rash"), sun sensitivity, hair loss, dry eyes and mouth, shortness of breath (which is frequently attributed to my history of asthma, even though I have had little issue with asthma when I don't have an upper respiratory infection or bronchitis), sores in the mouth, frequent and easy bruising, ringing in the ears, migraines and cluster headaches, and a difficult time recovering from minor illness.

About 3 years ago, I saw a Rheumy within the system who quickly diagnosed me as having both Lupus and Rheumatoid Arthritis, and gave me a script for Plaquenil. In the next visit, he told me he didn't like treating people with Fibromyalgia, and so I made the decision easy for him and sought out another Rheumy.

This second Rheumy was actually pretty likable. He listened to me, examined me, ran some additional blood work, and started throwing around the possibility that I was dealing with Ehlers Danlos Syndrome on top of the Fibromyalgia. He also ruled out Rheumatoid Arthritis, but was particularly concerned with my familial history of Antiphospholipid Syndrome (APS).

I'm not sure what happened, but between the third visit and the fourth visit, the investigative doc who I had started to trust suddenly hit me out of the blue with: "You need to have a gastric bypass. The extra weight isn't helping your Fibromyalgia." with no other mention of other conditions I was seeing him for.

Now, let me be clear. After my initial diagnosis, I learned not to seek out assistance from Rheumatologists for the Fibro. Frankly, their attitude towards the condition and me was always so negative and borderline hostile for "wasting their time", I choose to work with a PCP who could help me manage the Fibromyalgia to the best of my ability. I find myself having to state that at each Rheumy appointment. At this point, I only see a Rheumy because I'm on Plaquenil and it's generally not something a PCP will prescribe. Plus, I have a lot of symptoms that are concerning and fall outside of the Fibromyalgia realm.

And my weight is a sensitive issue. I have gained a lot of weight over the years from the variety of medications I've been on. I also did some really stupid things with my metabolism in high school, college, and grad school where I wouldn't eat all day. With the chronic nausea and fact I tend not to feel hunger, I have a tendency to skip meals. I worked with a nutritionist a few years ago, and started tracking my food, and despite being obese, we realized I was getting less than 1000 calories a day. In short, my body was in starvation mode and holding onto what food I did eat. I have to eat by a clock since I can't trust my body to signal me.

To add to all of this, for the past year, I have not been able to keep food in me. Thirty minutes to an hour after I eat, I'm sick. We've been working to figure out what's going on. Have I lost any weight? No. I have to assume it's what the nutritionist diagnosed as my body being in starvation mode. What I can say is that I'm beyond exhausted.

So when the doctor says I needed a gastric surgery to lose weight, yes, I became upset. It's frustrating to me to go from someone who just four years ago was vibrant and enjoying life to barely being able to function and not enjoying my life. If I honestly thought gastric bypass was the answer, I'd consider it. But since my (albeit, basic) understanding of the way the surgery works is that it limits calorie absorption--and I can't absorb calories since I can't keep food in me--I'm not sure that a major surgery would be helpful at this point.

This led me to request a new Rheumatologist, which brought me to you. And I hoped that the fact that you are a woman may mean you'd take me seriously. Historically, women--particularly overweight women who experience chronic pain--are not taken seriously by the medical profession. Our pain and reports of symptoms tend to be dismissed.

My hopes where immediately dashed when you walked into the office on that first appointment together and said to me, "I've worked closely with Dr. (last Rheumy I'd seen); I agree with everything he says."

I should have walked out at that point. There was no point to this appointment.

But no, I stuck around long enough to explain I was here because I was on Plaquenil (which, according to you, I shouldn't be on) and try to explain my symptoms (which, according to you, weren't rheumatological), and we ended the visit with the decision that we'd wait to see what the GI specialist came up with on my GI stuff.

Our next visit, I brought my husband with me. It says something to me when I feel it necessary to bring a man to my doctors' appointments so that I can be taken seriously, but we were at that point. (I'd like to mention that he accompanies me to a lot of my appointments just to be a support and second set of ears. He also gets the chance to ask any questions or bring up things that my fibrofog caused me to forget.)

Within 5 minutes of walking in the door, you refused to listen to my list of symptoms, again stated that you wouldn't have put me on the Plaquenil due to my tests, and asked me if anyone had ever talked to me about Fibromyalgia.

I admit, it was not my finest moment, but I completely broke down and lost it. Not only did you seem to not have read anything in my chart, but you weren't interested in listening to me at all.

My wonderful husband kept me from walking out of the appointment and explained the issues that I'd been having and eventually convinced you that blood tests were warranted. You acquiesced, letting us both know that things probably wouldn't show up, but you'd run the blood work.

The thing is I want to see you less than you want to see me. You may be a great doctor. But your bedside manner needs some serious work.

I felt a bit vindicated when my blood work came back funky. I read the pathologist's report that there was definitely something going on in my blood work, but it was unclear if it was well controlled Lupus (since I am on Plaquenil, I assume) or something related to APS. My kidney tests also showed some abnormalities that we're following up on. For the first time in years, my SED rate was low and my white cell blood count was down (which was interesting because I was diagnosed with a raging Parotid Gland infection a few days later.)

You see, I know a lot about the conditions listed in this blog. I know a lot about the tests. I read the same medical journals you do, as well as belong to several organizations dedicated to chronic pain management and advocacy around these invisible illnesses. I am not only a chronic pain patient, I am a mental health practitioner who works with individuals who live with chronic pain. I probably do more research than you in this area. While you may be an expert in the field of Rheumatology, I am an expert of what I experience in my body and what might be affecting me. I also research all the treatment options and I know which medications I've been on, which I can't tolerate, and what I'm not willing to even try.

I realize I'm either the best kind of patient (to the right doctor) or the worst because I educate myself and I advocate for myself, and I have no problems verbalizing my concerns about treatment. I'm also a complicated patient who has a lot going on. I didn't ask to have all of these issues or to be a difficult patient. I didn't ask to spend so much time at doctor's offices, having procedures, getting tests done, or being sick. I want my life back (or at least what I can get back).

In my heart of heart's I believe there is something rheumatological going on. That is why I continue to push forward.

I've applied the "three strikes" rule to doctors, and so far, you've got two strikes against you, Doc. I'll see you one more time, but if this visit goes the way of the others, I'm moving on. (And since Rheumatologists seem to be leaving my medical system at a rapid rate, I'll likely request referrals to UCSF and/or Stanford.)

Well, Doc, this sums up what you haven't been willing to let me share in our appointments. I'm not after a particular diagnosis or treatment, but I am after good medical treatment, which is what everyone deserves.



A list of medical definitions in my medical chart.

Incongruence (Or why I can be smiling and still reporting a pain scale that's off the charts.)

In mental health, we spend a lot of time evaluating a person's mood (what they're feeling, how they're feeling, if they're happy or depressed --or any variety in between) and their affect (how they appear). Most of the time, in the general population, people reflect how they feel.  So if they're happy, they're smiling; if they're sad, they're not necessarily smiling.  In the field, in these cases, we say that someone's mood is congruent to their affect.

But sometimes, people who are happy do not reflect this.  Or they may not appear to be much of anything, but they report differently.  In these cases, we indicate that this person's mood and affect is "incongruent".  (Yes, spellcheck, that really is a word.)

In my 20+ years of living with chronic pain and invisible illness, I learned that I don't want to live in the pain.  I'd rather be smiling and laughing.  Humor tends to be my default.  (And I'll be the first to make jokes about myself.)  Anyone who's ever been in one of my trainings or spent time with me as a supervisor knows that I have a dry sense of humor and I'm not afraid to use it!  (But only when appropriate of course.  :) )

But I also tend to use it with my medical team.  I tease my acupuncturist that he's my monthly torture appointment (those cups hurt!) and I joked with my rheumy the other day that my pain spike is related to the seasonal change that we have yet to have, but that my body says we should be having. Humor also tends to be my mask.

I've become so practiced at wearing my mask that the only people who see me not wearing it are those who are the closest to me.  The ones who know me really well can see through the cracks in my mask when I'm not doing well.  They can see past the humor.

But the doctor I've just met for the first time?  They only get to see my mask.  I might not make jokes with them, because they won't realize I'm joking, but they get my pleasant affect and demeanor.  And yes, I get double takes when I present as pleasant, smiling, and report an '8' on the traditional pain scale.  Or I receive looks of disbelief.

What a lot of people don't realize is that handling an 8 with humor--when possible--makes that pain feel better than handling an 8 with depression or anger.  It's still an 8, but with a little bit of humor and pleasantness, I can fake my body into believing that the pain is actually a 7, even if it's just for a few moments at a time.

This incongruence is why I have such a difficult time when medical professionals attempt to rate someone's pain only by how they're presenting, rather than asking for a self report.  What someone else's definition of what a particular pain level should be based on what an individual presents as--particularly if they have never experienced said pain level--isn't an accurate reporting tool.  The pain scale is really a self-reporting scale.  It's my experience of the feeling of pain in my body.  That experience--the sensations of pain, the location, the quality, the severity--will change from person to person.  My "8" might be someone else's "10" or it could even be someone else's "4".  But I've dealt with this so long that there are extremely few medical professionals who could come close to evaluating my pain level by studying my facial expressions and body language.

Now, as a caveat, are there people who will report high pain levels to get the "good stuff"? Absolutely.  But even those people should not be criminalized; addiction is a disease and should be treated as such. And by assuming any person who reports a high pain number with an incongruent presentation is simply drug seeking?  That's just doing a disservice to individuals experiencing chronic pain.

A link to the definitions of conditions I have in my medical chart.

Everyday tasks that become challenges for Chronic Pain Warriors/those with invisible illness

In the field of mental health, we often talk about a client's ability to perform Activities of Daily Living (or ADLs, because we mental health types tend to talk in alphabet soup). These are activities related to hygiene, ability to cook and care for oneself, ability to complete chores, ability to function appropriately in social settings, ability to budget and manage finances, and just generally things that most adults are able to do for themselves.

There are times when adults aren't able to complete ADLs for themselves. Illness tends to be a big factor in this, whether it's physical or mental illness. Those who know my professional persona typically see someone that's fairly high energy, on-the-go, jumping from one task to the next, being the calm in the storm, great in a crisis type of person.  I'm the one who can strike up a conversation at the hair salon or in the grocery store with complete strangers.  It's not fake; I genuinely care about people and I genuinely enjoy what I do.  I enjoy what I do for a living, and I want to be the kind of person other people enjoy working with.

But I have to admit, it's an act. I don't fake being sick; I fake being well.  And yes, there are times when I can be considered someone who is unable to complete their ADLs.  There are many everyday tasks that can be difficult for individuals with chronic pain/invisible illness to complete.  Here are a few things that can be challenges:

Showering
Showering can be an interesting experience.  Many people with autoimmune disease/fibromyalgia/chronic pain experience a condition called Dysautonomia, which can cause exhaustion, tachycardia (fast heart beat), and the feeling that one might faint (or that one might actually faint).  While the heat from the shower can help ease some of the pain and relax muscles, the heat from showering can also cause other problems.

For someone like me, without a working internal thermostat, the heat can cause me to overheat quite easily.  Conversely, a cooler shower can also cause problems because the cooler water can trigger my Reynaud's phenomenon.

It's not uncommon for me to sit in the tub of the shower to bathe while the shower is running, or to take baths and use the handheld shower-head to wash my hair.  But there are days when bathing in the morning just does me in for the day.

Cooking
I love to cook, and I'm a pretty good one.  There's nothing quite as exciting as getting new recipes or walking through the produce section of a Whole Foods or a farmer's market during the summer months and seeing all of the great produce.  I can come up with fantastic recipes off the top of my head, and I love cooking with fresh herbs from my garden.

But I had to learn awhile ago that I had to make a choice.  After working all day, I don't have the energy to cook meals.  Some days, I barely have energy to heat something up in the microwave. Sometimes I just hurt too much to stand any longer.

This is where it becomes a trade-off. I'm fortunate in that my husband is willing to do much of the cooking and I try to help with finding easy and health recipes that can make leftovers. I still get to cook at times, but it's usually relegated to weekends and I usually throw something together for the crock pot.  I have to be honest, though.  If it weren't for him, ensuring that I ate regularly would be a problem.

Cleaning
Flat out, I pay someone to come clean regularly. I learned a long time ago that if my priority was being able to work that meant two things when it came to cleaning: 1) I wasn't going to be able to work full time and clean my house regularly and 2) paying someone else to clean is a necessary expense for my health.

Now, housecleaning happens every other week, and so we still have to do things like dishes and laundry and general day-to-day cleaning, and that can still be a challenge.  I've had to be okay with shortcuts on some things.  Again, my husband has had to take on more than his fair share of chores. And I've had to learn to ask for help...which I'm still working on.

Paying Bills
This is where brain fog can really cause problems.  It's so easy to simply forget to pay a bill unless there's some sort of system in place.  For me, I actually put which bills to pay when on my calendar on my computer and my banking is all online.  (The issues with my hands have become worse over the last few months and typing is infinitely easier for me than writing checks.)  But I admit, there are times when due dates slip by.

Part of self-care means taking care of these activities. There are some aids to help with showering and cleaning, but it can also mean sometimes those of us dealing with Chronic Pain/Invisible Illness need to reach out and ask for assistance. It's hard to admit that one has trouble with tasks that a "normal person" takes for granted, particularly when we're talking about a disability that's invisible.

To friends and supporters of someone dealing with Chronic Pain/Invisible Illness, be there. Be willing to listen and support. Don't judge. Don't make jokes about these sorts of things. Be honored if they ask you for help and support, because that means they trust you.

To the Chronic Pain Warriors/Individuals with Invisible Illness, let your supporters help you. Be gentle with yourself. And do what you need to do to take care of yourself, even if it means having to put other things on that "to do" list aside.


Definitions of medical conditions listed in my medical chart

The Challenges Chronic Pain can Place on Relationships (Or Chronic Pain is SO Not Sexy.)

Relationships--whether they're romantic or platonic--are difficult without any additional factors.  I'll talk about friendships and chronic pain in a future blog post and so I'll be focusing on romantic relationships for the purpose of this post.

The fairy tales would have us believe that the difficult part of relationships are the courting/dating/getting to know each other stage and then it's "happily ever after", but anyone who's been in a serious relationship for any length of time (and yes, I'm including marriage/domestic partnerships in this as well) will tell you that the hard work starts after the honeymoon stage and continues on throughout the length of the partnership.  It's hard work when both parties are healthy. But, when one is sick, it adds another layer of stress onto the relationship.

Let's look at a scenario.  Think about a wedding you may have attended or a wedding you saw in a movie or show that used the vows "In sickness and health."  Usually, both parties are happy and shiny, and the words "in sickness" don't really sink in.  It's an abstract concept.  "Of course, I'll stick by my loved one if they're ill" is easy to say when their loved one has only had a cold during the course of the relationship until this point.  Chronic pain/chronic illness is a completely different ballgame.

I'm very fortunate in my marriage.  My husband knew I was dealing with Fibromyalgia when we met. During the years before we got married, he saw me at some of my sickest points. Still, neither of us could have predicted the two surgeries I've had or the other diagnoses to come along or how my health would decline and that's added quite a bit of stress, but he understood that there would be good days and bad days.  He understood that my desire to work and live my life meant that he would have to take on more of his fair share of the household duties.  (And when it was determined this wasn't a strength of his, the housekeeper we invested in was the best for both of us and our relationship.)  This doesn't mean he doesn't get frustrated with me or my body at times; he's only human.  But in many ways, because we've dealt with some pretty serious things, we don't get caught up in the "small stuff drama" as much.  (One positive thing about illness is that it will put things into perspective.)

I know a lot of Chronic Pain Warriors who have not been as fortunate.  Many individuals who have been diagnosed later in life have gone from healthy (prior to marriage or commitment) to chronically ill, and their partner doesn't get it.  And quite honestly, I understand.  I see both sides of the issue. The ill person who was once full of life has now had their life reduced to being sick and their own frustration at not being able to do everything they once could is high.  But their partner--perhaps despite saying they'd stick around "in sickness"--didn't sign on for this.  The healthy partner sees how the sick one has changed, and in many cases, now becomes a caregiver for the sick partner.  The relationship dynamic has now changed.  There may be feelings of resentment on both sides of the relationship.  The caregiver now sees their partner in a different way and may feel less than romantic feelings toward their partner, which can really change things.

Please do not misunderstand me; I'm not saying that romantic relationships have to fail when someone is chronically ill.  Many relationships fight their way through the battle and come out stronger.

Communication is key--constant, open, and honest communication.  The Chronic Pain Warrior needs to communicate their needs, their frustrations, and their desires and the partners needs to communicate their own needs, frustrations, and desires.  It's important to be able to communicate openly about all of this, because both sides have needs, frustrations, and desires, and not being able to acknowledge or communicate them is only going to lead to resentment.

And it's not an easy thing to listen to your partner tell you, "I'm frustrated with you because..."  It requires a certain level of openness and maturity to not respond with, "Well, yeah?  I'm frustrated with you because...!"  But if you can both communicate what you each feel challenges are, that leads to the opportunity for a conversation that can create solutions, or at the very least, clears the air of any lingering resentment.


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Since this is a post on romantic relationships, I would be amiss for not discussing the impact of chronic pain on a sexual relationship.  (This is the Not Safe For Work (NSFW) portion of the blog.) For those who identify as asexual and are in relationships, this may or may not apply to you.

There are people out there who enjoy pain in a sexual manner, but I have yet to meet a Chronic Pain Warrior who's a masochist.  (Not that they don't exist, just that I haven't met one yet.)  In my experience, people who experience chronic pain find that it doesn't add to feeling sexy. Fibromyalgia, Lupus, and other invisible illnesses can also impact reproductive systems, adding to more pain and discomfort, which can account for low libidos. The fatigue that's associated with these conditions can also be problematic; who wants to have sex when you have no energy?

I want to address an issue that may make me very unpopular.
I belong to a number of Chronic Pain/Autoimmune Disease/Invisible Illness support groups, and the following question occasionally comes up:  How do I get my partner to understand that I'm in pain and can't have sex with them?

Typically, the individuals posing these questions are women and they're referring to their male partners.  (Again, this is not to say that men don't experience chronic pain.  Chronic pain can impact all genders.)  And the responses are typically from other women lamenting how "men don't get it" and "he'll just have to deal with [not having a sexual relationship]".

I don't agree with this stance.  And before anyone lam basts me in the comments, hear me out. Sex is healthy.  It raises endorphins (which can improve mood and decrease pain level), and increases intimacy and connection with your partner (which can also improve mood).

I'm also an advocate for couples creating their own definition of "sex."  There's this heteronormative idea that "sex" is only penis-in-vagina penetration, but people all over the sexual orientation spectrum can inform couples differently.  And while what may work for one couple may not work for another, it doesn't make it any less sexual or intimate.

I'm an avid reader of Dan Savage, advice columnist who can be somewhat controversial at times, but he makes some great points when it comes to mismatched libidos negatively impacting relationships. That happens when both parties are "healthy", but what happens when it's an illness that's caused a rift in your sex life?  Simply refusing to acknowledge the sexual needs of your partner isn't fair to them.  And you might be refusing to acknowledge your own sexual needs as well.

Because it's okay to have a disability AND be a sexual creature.

What many don't recognize is that people with disabilities (including chronic pain) can have desires to be sexual as well. There may just need to be some workarounds to make things happen. Here are some resources for the over 18 crowd:

• Good Vibrations- A great place to shop for toys and stuff, but also a great resource for education and support.  They are extremely "woman friendly" and cater to all genders and sexual orientations.  They have extremely knowledgeable staff, and if you're in the California Bay Area, check out any of their Bay Area locations.  (And check out their articles on Sex and Disability.)
• Liberator - In short, they sell furniture for sex.  Their wedges and ramps can provide extra support, which can be very helpful for individuals with chronic pain and conditions like Hypermobility Joint Syndrome.  The furniture is constructed out of sturdy foam that's lightweight, and it can also be used for restorative yoga poses and meditation.
• Book:  The Ultimate Guide to Sex and Disability by Miriam Kaufman, M.D., Cory Silverberg, and Fran Odette is a great resource for a multitude of disabilities, including Chronic Pain

Are there times when sex just can't happen? Of course. It all boils down to open and clear communication with your partner.


Definitions of Medical Conditions Listed in my Medical Chart

Fatigue and Autoimmune Disease (Or When did I have these lead bricks attached to my extremities?)

I've been meaning to write the post on fatigue for awhile, but I've been way too tired to compose my thoughts.

(And I wish I were joking when I say that.)

The fatigue of conditions like Fibromyalgia, Lupus, R/A, Chronic Fatigue Syndrome (now known as "Systemic Exertion Intolerance Disease"), and other Autoimmune Conditions (or conditions that mimic autoimmunity) isn't just a feeling of being tired.  It's not something that can be resolved with a nap or a good night's sleep.

The fatigue--much like the pain--is always there.  There are days when it may be "fatigue lite" and the fatigue isn't so bad, but there are also days when it can be extremely debilitating.  Each person experiences their fatigue differently, and just like the pain, it can be unpredictable.

I recently read something that stated it takes a person with Fibromyalgia 5 times more energy to complete a simple task than someone who does not have Fibromyalgia.  I'm not sure if that's true--or if it's simply a matter that it requires so much more of the little energy we have combined with the lack of physical ability and/or cognitive ability due to the fatigue--but it highlights a point that the fatigue of these conditions is one of the biggest challenges to living with them.

The fatigue impacts everything.  Simple, everyday activities are made just that much harder by fatigue.  And if it's a really bad fatigue day, those activities may be impossible for the person to perform.  For me, I can handle the pain relatively easy, but the fatigue--particularly if it's a severe fatigue day--is what will completely do me in.

The fact is that fatigue is a major part of conditions like these.  Chronic pain fatigues the body.  The assault that our bodies go through from the autoimmune conditions fatigues us. To those who don't experience life with chronic pain/invisible illness, it can be difficult to fathom how the fatigue can feel.

Fatigue isn't fun, but there are a few things that I've learned over the years that can help with it:

• Regular light exercise.  Look for an upcoming post on this topic, but in short, activities that get your blood pumping like walking or aqua aerobics can be great.  
• Practice good sleep hygiene.  This will also be an upcoming blog topic, but you want to try to keep your sleep schedule as regular as possible. A few tips now? Avoid television and electronic devices before going to bed, avoid exercise right before bed, and keep the same schedule for sleeping (i.e.- go to bed at ten every night, wake up at 6 every morning).
• Spend time outside.  Time spent in sunshine, fresh air, and nature has been shown to improve mood, decrease anxiety, and gives you Vitamin D.
• Avoid caffeine and sugar. Yes, it can be a quick boost in the moment, and even I've been guilty of using these trying to get through the day, but while they provide a quick boost, the crash tends to be harder and meaner.
• Get rest when you need to.  One of the biggest challenges with any of these conditions is difficulty falling asleep and staying asleep, and so "rest" doesn't necessarily mean "sleep".  It can mean just sitting with your legs up for a half hour or doing something mindless, like watching a funny movie.
• Manage activities.  "No" is a very important (and underused) word.  No one can do it all, and in order to focus on your health, you'll need to prioritize activites and you'll likely have to turn down activities.  And that's okay.
• Manage stress.  This corresponds to "manage activities", but developing coping skills to manage other stressors is also extremely helpful.  
• Get creative.  Television can be a great way to escape for a little while, but it can also be an easy way to suddenly realize you haven't moved in 8 hours. Doing something that may not be active, but that can engage the mind a little, can be a good thing.  For instance, I enjoy knitting. If my hands are really bad that day, but if I can hold a pencil, I'll color mandalas.  
• Meditation.  Meditation can be extremely relaxing and healing.  This doesn't mean you have to find a cushion to sit on and chant "Om" for hours on end. (Although, if that's your preferred style of meditation, go for it.)  Guided imagery can be a great tool, and there are several meditation aps on the market today (I love Simply Being.).  Another great tool is restorative yoga or Yoga Nidra.  The more you practice meditative techniques, the better you'll get at it.
• And most of all, Be Gentle With Yourself.  Beating yourself up won't help you feel better and it certainly won't help the fatigue.  

Definitions of Conditions Listed in my Medical Chart