When the Hepatitis C Virus is attacking your liver, your body feels tired. The best thing to do when fatigue strikes is to listen to your body. Take some action steps to gain your strength back so you can enjoy life.
For many, fighting fatigue can begin the moment you wake up, making it hard to get out of bed. Try starting with a few changes in your routine. Instead of reaching for caffeine to be the jolt you need, reach for a glass of water first. Let it cleanse your stomach with a cool wake up.
Once you’re up and ready, a cup of coffee has been proven to fight liver cancer, so drink it with a healthy breakfast. Sugar filled cereals or baked goods will not only reduce your energy, they can make you feel worse as the day goes on. Try whole grains and fruit,
Think about ways to play. Get out for a change of scenery by taking your lunch to a park. Find a place in nature where you can relax and get away from the hustle and bustle. If there is a lake or pond nearby, get out your fishing pole. When you have engaged in play, you are more likely to laugh and feel energetic.
Throughout the day, drink plenty of water. This is refreshing for your body and keeps it functioning well. Being dehydrated can make you tired and also give you a tired appearance.
Go for a walk! When you get dressed and put on good walking shoes, you have already begun to defeat your fatigue. Even a 15 minute stroll can increase your mental and physical energy. You may work up to a brisk walk and eventually be able to do some fun running!
Tweaking your diet is an easy way to gain more energy and strength. By eating nutritious snacks throughout the day, you are sure to have better blood sugar levels. When you feel sluggish, look for a piece of fruit or a granola snack.
Ask your doctor about vitamins that are safe for your liver. A multi-vitamin can boost a sagging immune system. Look for a brand that has some B vitamins for energy support. While you are on treatment, there are certain vitamins that your doctor may or many not want you to take.
Reducing stress may be the greatest way to get rid of fatigue. When you don’t feel good, it is easy to let your mind wander to worrisome thoughts. You have a lot to think about with liver disease and treatment for Hep C. Try to write down the things that concern you the most and talk to your doctor about them.
Get a good night’s sleep. When you first start to yawn is a good time to tuck in. Your body is telling you to rest. Avoid caffeine, nicotine, and sugar after dinner. If you can’t sleep due to reverse sleep pattern, at least try and lay still. Think calming thoughts.
All of these small changes can add up to a less fatigued body. Your mind will be more at peace too. You always have the power to battle fatigue!
Multiple Sclerosis strikes each of its victims differently. Some patients suffer from cognitive difficulties, others from muscle weakness and spasticity, and yet others from severe fatigue. Most patients put up with their own peculiar blend of Multiple Sclerosis symptoms . One thing we all have in common, though, is that we are no longer “well”. We have been set apart by disease, we are separated from the main, and instead have become members of an exclusive club that none of us wanted to join.
Most of us are diagnosed while our symptoms are still fairly mild, and for a while, we can pass as “well”, our new club membership hidden from general view. But as the disease progresses it becomes unmistakably clear that something is wrong. We are no longer just like everybody else, dealing with the usual day-to-day crap that life hands out indiscriminately. Breakups, money troubles, deaths in the family; hell, we’re all in that together. But when struck with illness, and particularly with an illness like MS that advertises its presence like a highway billboard, we become something different. We become the “other”, and many people begin to treat us as such.
Like our symptoms, the change that we see in how others interact with us is subtle at first, almost imperceptible, but becomes more obvious as the illness continues to unmask itself. The disease not only wreaks havoc on us internally, physically and emotionally, but externally as well, as it changes our relationship with the world and the people who populate it.
As patients progress from invisibly ill to visibly disabled, many express dismay at how diminished they feel by the crass and thoughtless actions of others. There’s one important thing to keep in mind when confronted with such situations, three little words that very succinctly sum up the whole of mankind: People are idiots. That goes for everybody, me included. I can easily look back over my life and recall countless instances of my own sheer idiocy.
I fully remember, back when I was well, becoming incensed at the wheelchair bound person who had the nerve to want to board the bus I was riding to work on. Their utter disregard for my schedule required the driver to get up out of his seat, walk to the back of the bus, operate the wheelchair lift, secure the disabled person in place, walk back to the front of the bus, and finally get us moving again. Dammit, that gimp made me late for work! I was fuming. Yes indeed, I was, am, and always will be an idiot. And so will everybody else in the world.
This is not to excuse people for their insensitivity, but rather is an attempt to understand them. Truly, most of them know not what they do. Generally, people are so wrapped up in their own lives that they give very little thought to those around them, disabled or not. If they do take a moment to ponder us, we serve primarily as a frightening reminder of their own frailty. When they treat us like we are somehow made less by our disabilities, or as if being in a wheelchair somehow implies that we are mentally feeble, or if they simply act with utter indifference to our difficulties, most often their attitudes and actions have no real malice behind them. They are just doing what human beings do, each of them experiencing their own version of reality, featuring themselves as the center of the universe.
I find the best defense against this plague of solipsism is a good offense. Speak up, develop a style, let your humanity shout from the rooftops. When out and about doing the Wheelchair Kamikaze thing, I’m usually wearing a fedora, and have my cobra head cane attached quite visibly to my chair. I drive the thing with a boyish abandon, refusing to allow the wheelchair to turn me into a shrinking violet. Quite the opposite, actually, I’m much more rambunctious now than when I got around on two feet. Very often, I also have a big honking camera rigged to the chair, which usually grabs people’s attention. Flourishes like this seem to remind people that there is a human being in that mechanical contraption, and one that might even be interesting to talk to, if you can catch up to him.
Dealing with friends and family can be a much more complicated matter. Those with whom we share affection can be almost as traumatized by our illnesses as we are. This trauma can show itself in many different ways, most of them unpleasant, and some quite troubling. They run the gamut from doting and over attentiveness to the severing of ties and the ending of long-standing relationships.
I’ve seen several of those closest to me show themselves to be almost entirely unable to deal with my encroaching disability. One of my oldest and dearest friends, with whom I’ve shared some of my most guarded thoughts and feelings, as well as an almost comical mutual hypochondria, and who helped me through years of emotional ups and downs, was simply incapable of maintaining our relationship once I got sick. My illness simply scared the living crap out of her. If it could happen to me, it could happen to her, too, and I think that this reality was just too much to handle. It’s now been several years since we last spoke, and honestly, I don’t hold it against her. I know this person well enough to understand that this seeming disregard actually speaks to just how deeply she cared about me. She simply couldn’t bear to watch me wither. Although, if she reads this, as I suspect she might, I’ll say this: pick up the damn phone the next time I call, or I just might get angry. Stop being silly. I’m the same me that I always was, and I promise, over the phone you won’t be able to see my MS…
I’ve seen similar responses in several very close family members, as well. On the phone, things are great, the same as they ever were, but in person there is a visible unease, an awkwardness over compensated for by false joviality and babbling happy talk. Again, I try my best to understand that this is an expression of the heartbreak they feel over my getting sick.
When I first started experiencing real difficulty walking, and was unsteady even with a cane, I watched one family member’s blood drain from his face as he watched me struggle, and I thought for a moment that he actually might pass out. Now, it’s high time he get over it, and learn to deal with the new, unimproved me, but folks in general don’t deal well with change. When that change involves somebody they love very deeply suffering from a horrendous and progressively crippling illness, their brains kick into denial mode, and some are simply not strong enough to force acceptance.
I am blessed to have several folks in my life who treat me just like the same old jackass I ever was. When I’m with them in the wheelchair, the only difference between then and now is that I suddenly seem to have gotten a few feet shorter. I’m still the target of their barbs and wisecracks, and they’re still the target of mine. Once they understood it was okay, they’ve joined me in joking about my predicament. After all, the whole thing is simply too absurd to not joke about. Me, in a wheelchair? Zooming around like a crazy person, wearing a vintage fedora, accompanied by a wooden snake complete with fangs and forked tongue? Rolling around, taking pictures from my new and somewhat unique vantage point, and videotaping my near collisions with objects both animate and inanimate, great and small? You’ve got to admit, it’s kind of funny. It gets less funny the more disabled I become, but still, when I stop being able to laugh at myself, that’s when it’s time to check out…
I’ve found that the people I have the most trouble coming to terms with are old friends that know nothing of my illness, who have tried to reconnect. In this age of Google and Facebook it’s very easy for people who long ago drifted out of your life to find you and try to reestablish connections. For some reason, I find that I have some sort of an aversion to this kind of thing. Although many who have tried to reconnect are people that I’ve thought of often and who I’d really like to know again, I find myself unable to breach the MS hurdle.
I know this is strange, since I certainly make no secret of my MS (as is evidenced by this blog), but I’ve yet to respond to anyone from my past who isn’t aware of my illness when they’ve tried to “friend” me on Facebook. It’s gotten to the point where I’m practically Facebook phobic, and usually avoid the site.
Many of these folks are people who knew me in my 20s and early 30s, when I was young, reckless, and living a very bohemian lifestyle. In some ways, I think I’d rather them just remember me as I was, forever young. Thing is, now that I’m older and wiser, and having dealt with this freaking illness, I might actually be able to be of some benefit to them, if only to serve as an example of why they should live their life to the fullest each and every day. Still, I can’t quite get myself to respond. Even as I write this, it sounds foolish, because I actually miss many of these people, and would likely very much enjoy having them back in my life.
As I said before, I have only one explanation. Just like everybody else, I am unquestionably an idiot. A complicated, disabled idiot, but an idiot nonetheless…
Living in the wealthiest country on Earth, it’s easy to take things for granted. I turn a faucet, and clean running water instantly pours out. I adjust the thermostat and immediately cool air fills a stuffy room or warm air combats a frigid one. When I’m hungry I simply go to the refrigerator or the grocery store or a restaurant, never needing to travel far to fill my belly. Anytime I stop to think about any of these modern minor miracles, I feel incredibly grateful to be living in such abundance, yet I don’t always take the time to take stock and feel grateful.
While I often take my creature comforts for granted, living with rheumatoid arthritis reminds me of physical sensations I can also forget to be grateful for, like feeling energized, pain-free, and able to withstand pressure against my body. During my latest flare, I’ve been reflecting about that last sensation, about how RA can make the physical world feel very heavy indeed. While being a young person with a chronic illness can feel heavy on my heart, RA makes the physical world literally feel dense and weighty.
For example, when I’m in a flare the weight of covers on my body at night can feel more like the weight of a thick x-ray vest rather than a lightweight comforter. The pressure of a blanket against inflamed joints can increase my pain to a level that makes it impossible to sleep. Instead of having the covers on, I adjust the thermostat to a comfortable temperature or use a space heater in my bedroom during the winter to avoid an enormous heating bill.
Similarly, lightweight items that I don’t think twice about carrying when my joints are doing well become incredibly heavy when I’m in a flare. For instance, the weight of my purse seems to multiply when my joints hurt. Since developing RA I only opt for small pocketbooks, knowing that a larger bag would be hard on my shoulder, hips and knees. However, during a flare even my minimalist, small bag feels like I’m toting lead instead of a wallet, phone, and lipstick.
The same goes for clothing. In the winter, wool sweaters and coats can feel like they are pressing down against my inflamed joints. I opt for layers of lighter material instead. There are times when I try on clothing in a dressing room or borrow a sweater or coat from my husband, and I’m immediately shocked at how sensitive my body is to the simple weight of an item of clothing.
My house is also filled with small items that take on mammoth proportions because of RA. For instance, I can’t put my laptop on top of my lap if I’m in a flare. The weight of even a lightweight Chromebook is too heavy for my hips, not to mention my heavier duty laptop computer. I often want to use a computer when I’m in a flare, as it’s difficult to feel productive from a prone position, so I prop the laptop on a pillow on my belly. It makes for awkward typing, but I’ll take that inconvenience over an increase in pain. Books also become very heavy in swollen hands. I always prop books, even the thinnest novellas, against pillows so that I’m not holding their full weight. There have been times when I have to put off reading epic tales or hardbacks because they are simply too heavy for my hands to hold upright, even with the pillow doing the bulk of the “heavy lifting.”
By far the thing that weighs most on my heart when weighing on my body is having to keep my children at an arm’s length when they want to cuddle or sit on my lap. When I’m feeling well, there’s nothing I enjoy more than snuggling with my sweet son and daughter. However, in a flare even one of their little heads resting on my shoulder can be excruciating. They’ve learned that when “Mommy’s bones hurt” I don’t want to be touched, but that doesn’t stop them from wanting to be held or sit on my lap. Blowing kisses and holding hands are consolation prizes that pale in comparison to snuggling.
Living with a chronic health condition can feel heavy in so many ways, but when the disease is RA, it can make the world literally feel weighty.
Do you experience increased sensitivity to pressure and weight when you’re in a flare? What items become heavier for you?
Few lies can be told in one word, but “superfood” manages it. It is such an appealing idea: that some foods are healthy, some unhealthy and some superhealthy. Why change your habits, when you can correct them by adding goji berries? Why settle for boring old good health, when chia seeds on your cereal can make you superhealthy? Little wonder that 61% of British people reported buying foods because they were supposed superfoods, according to a 2014 survey conducted by YouGov for Bupa.
Of course, there is always science talk, of omega-3s and glucosinolates and anthocyanins. Many of us may feel we understand the value of antioxidants that “mop up” the free radicals that damage our cells, causing ageing and cancer. Yet in 2011, the European Food Safety Authority (Efsa) reviewed the evidence and found no actual benefit to health. Indeed, as Ben Goldacre pointed out in his book Bad Science, the body actually uses free radicals to kill bacteria. Does that mean a surfeit of antioxidants might weaken your immune system? The point comes when you have to give up and ask a doctor. (A real one, not Gillian McKeith.)
The truth – so unappealing – is that nutrition is fabulously complex, different for everybody and mostly mysterious. We know that if you eat a balanced diet with plenty of fruit and vegetables and do regular exercise, nothing is a superfood. And if you don’t, no superfood will save you.
Currently one of the coolest superfoods around, kale is also one of the most perplexing. Isn’t it just one of the “greens” people have been told to eat for about as long as they have had a choice? Certainly, you would struggle to find a less exotic vegetable. Kale has grown in northern Europe, and plenty of other places, for thousands of years. In wartime, it was one of the stolid, practical crops that people were advised to grow in their gardens. Along with cavolo nero and red Russian kale, it is one of many cultivars of the magnificent Brassica oleraceaspecies, which also gives us cabbage, broccoli, cauliflower, kohlrabi and brussels sprouts, and is closely related to turnips, bok choy and Chinese cabbage.
Health benefits Well, we know that it is healthy to eat a diet containing plenty of vegetables, so really the question ought to be: is kale significantly better than the rest of them? And that is easy. No, it isn’t. Fans of superfoods like to list the things that kale contains a lot of (iron, vitamins, fibre, antioxidants) and point out what those things do (make red blood cells; miscellaneous; help you poo; “mop up free radicals”/don’t know), but that doesn’t mean your body gets superpowers if you eat more than you need, especially if you’re already getting enough from other sources. It’s like trying to make your car go faster by putting in more petrol. All vegetables contain different amounts of vitamins and minerals, which also vary depending on the soil they are grown in, so there is not much point making them compete in a nutrient competition. Sure, by weight, typical kale contains more calcium, vitamin B6 – and indeed calories – than typical cabbage, broccoli, brussels sprouts, spinach or carrots, but eating more of them will get you to the same place. Typical kale also contains less vitamin A than carrots, less iron, magnesium or potassium than spinach and less fibre than brussels sprouts. Big deal. No good evidence shows that eating plenty of fruit and vegetables with kale is any better than eating plenty of them without.
Eco rating Close to perfect – you can grow it easily yourself (under a net to keep off the cabbage white butterflies).
Hipster rating Sky-high.
Stars in Crispy chips, colcannon, not-very-nice salads.
A true delicacy, when just ripe, and now one of the most popular fruits in the US. (It is technically a fruit rather than a vegetable. Very technically, it’s a large berry.) So high is the demand for avocados, in fact, that the crop has recently caught the attention of Mexico’s criminal gangs. To look at, use, and taste – and, indeed, in its nutritional content – avocado is certainly unusual. Whether it has superpowers is another matter.
Health benefits The high fat content stands out immediately. It is monounsaturated fat, which helps to protect your cardiovascular system, but you can also get that from oily fish, nuts, uncooked olive oil, sunflower oil … loads of things. And you should. As result, despite seeming so light and barely filling you up at all, avocados are hugely calorific. A whole one provides about 240 calories. (A Mars Bar provides 228.) An excellent way of getting fat by mistake is to go on a misguided avocado binge. A review of eight preliminary studies in 2013 found that eating hass avocados may benefit the cardiovascular system. However, this is far from established and, more importantly, the review was paid for by – who else? – the Hass Avocado Board. Currently, there are no good-quality independent systematic reviews of the effects of avocados on health. There have been reports that an extract of avocados might treat leukaemia, but the extract in question – avocatin B – comes from the seed in the middle, so you’ll get none from eating it.
Eco rating Not good, I’m afraid. Deforestation to make way for avocado trees is now a problem in Mexico. Even those trees that already exist need a very large amount of water – perhaps as much as 272 litres for every half-kilo of fruit (two or three avocados). In California, where there is a long-term water shortage, this is an even more serious problem. On top of all this, avocados are heavy, have to be shipped from the tropics and kept cool en route.
Pink, sweet, tasty and a little bit exotic, pomegranates are an easy fruit to like – especially when someone has already juiced them for you and removed the seeds (which contain all the fibre, by the way). Grenadine, the red syrup you last saw at the bottom of a tequila sunrise in 1992, was traditionally made from sweetened pomegranate juice. It is often replaced with less expensive fruit these days, since no one really notices.
Health benefits In 2012, a US judge ordered POM Wonderful to stop making bold health claims for its products. As things stand, studies only hint at benefits for people with existing health problems. It has been suggested that drinking lots of pomegranate juice might help to reduce the artery damage caused by cholesterol and improve blood flow to damaged hearts, but the evidence is neither decisive nor well understood. There is also a very faint suggestion that it may slow the progress of prostate cancer. You will not be surprised to hear that there are lots of antioxidants in pomegranates (especially in the peel, which you can’t eat), but that means exactly nothing until large doses of antioxidants, per se, are shown to improve people’s health.
Eco rating Pomegranate trees grow easily in hot places and manage well with limited water. Even so, the rush to get into the pomegranate business has left many central Indian farmers in trouble after years of inadequate rain.
Hipster rating Low, now that you can get it in washing-up liquid. Pomegranate molasses, which is basically sugar, is very cool.
Stars in Juice, couscous, and Persian, Indian and Pakistani stews.
Once known as wolfberries, this fruit of the boxthorn has become highly prized, and fairly expensive, under its sort-of Chinese name. When fresh, the fruits look like pink, elongated grapes. When dried, they look like pink raisins. As such, they are very easy to snack on and mix into things. The Chinese herbalist Li Ching-Yuen was said to have lived for 197 (or even 256 years) on a diet high in goji berries, but didn’t.
Health benefits Goji berries have played a big part in traditional Chinese medicine for thousands of years, but don’t take that as an endorsement. The best evidence suggests that traditional Chinese medicine, like traditional European medicine, was and is mostly a reassuring waste of time or actually harmful. Eating goji berries, or drinking the juice, almost certainly isn’t bad for you, but there is simply no evidence that they do anything more useful than any other fruit. Studies claiming they treat cancer, heart disease and various other things have been tiny, badly run and generally based on large doses of goji extract that you couldn’t possibly get by eating them normally.
Eco rating Fine. You can even grow your own, although most are shipped from China.
Hipster rating Good, especially if you can talk about how you grew them.
Stars in Juice, granola.
An obscure Central and South American seed with an ancient history and a weirdly high omega-3 content: chia seeds were destined to become a superfood long before anyone knew what, if any, good they did. They also behave quite excitingly in the kitchen, forming a gloopy kind of gel when mixed with liquids, which means you can use them to thicken drinks or even make strange jellies. Otherwise, you can scatter them on almost anything or grind them into a flour to bake with. They don’t taste of very much.
Health benefits Chia seeds are all about the small print. Omega-3 fatty acids, in case you hadn’t heard, are found in oily fish, and a broadly Mediterranean diet including oily fish seems to be a very healthy way to eat. One hundred grams of chia seeds contain about 17g of omega-3s, which is enormous – about eight times as much as salmon. However … the omega-3s in chia are different from the ones in fish, and your body turns the chia kind into the fish kind very inefficiently, meaning that you will actually absorb less, by weight – about 1.8g per 100g, compared with 2.3g. Nor is it easy to eat a full 100g of chia seeds, which, by the way, also contain 486 calories, almost as much as a Big Mac. And however part two: why do you want to eat lots of omega-3s? Fish is definitely good for you, helping to protect against cardiovascular disease. (The government recommends two portions, one oily, a week.) But the evidence for omega-3s from other sources is vague, and there is little evidence to suggest health benefits for chia in particular.
Eco rating Certainly an ecological improvement on fish, if you’re determined to get omega-3s from somewhere.
Hipster rating Getting a bit passé now.
Stars in Bread, granola bars, smoothies, weird jelly.
Not long ago, beetroot was a relic. You would see mushy spheres of it sealed in plastic, maybe soaked in vinegar. Only old people still had a taste for beetroot, like condensed milk or tongue. Now, like so many relics, it is cool again, and deserves to be. Freshly roasted, or grated, or pickled (carefully), or juiced, it is one of the great vegetables. You can eat the leaves, which are basically chard, and the classic purple beetroot has the jolly side-effect of dyeing you, your plate, your kitchen and your excreta red for the rest of the day.
Health benefits As vegetables go, beetroot is a fairly unspectacular source of vitamins and minerals. (Not that this matters. See kale.) Yet, like many vegetables, it is rich in nitrates, which somehow manage to make it a superfood, a sports supplement and a health scare, all at the same time. The good part is that beetroot juice does seem to lower blood pressure, a little, probably because of the nitric oxides that your body converts nitrates into. In practice, this is is not much use, however. If your blood pressure needs to be lowered, you are much better off doing exercise, eating less salt and taking the drugs your doctor gives you. Other research suggests that drinking beetroot juice before exercise improves the endurance of casual athletes by allowing more oxygen to be delivered around the body (but has little effect on serious ones). When added to red meat, however, nitrates worry people, as they form nitrosamines, and do lead to an increased risk of bowel cancer (from about a 5.6% lifetime risk in people who eat almost none, up to about 6.6% in people who eat lots). It is possible that the nitrates in beetroot could also form nitrosamines in your body, so Efsa recommends eating no more than about two beetroots a day.
Eco rating Excellent. Grow it yourself.
Hipster rating High, given its traditional unpopularity.
Stars in Everything. Salt-baked slabs with cheese, pickled in a jar, julienned in a salad, juiced for breakfast … You can even make beetroot cakes, or turn puddings pink with the dye.
Seaweed is definitely having a moment right now. It plays a big part in east Asian food, especially in Japan, and also crops up in the Philippines and in Welsh laverbread which, in case you’ve never tried it, is very unlike bread. Given its weirdness to those not used to eating algae, it is surprising that seaweed hasn’t had its moment sooner. It comes in many edible forms – laver or nori (they are similar), kelp, sea grapes, dulse and plenty more. All are different, and some have special claims attached to them, but it is possible to generalise a bit.
Health benefits Brace yourself, because seaweed is a rare example of a non-animal product that is rich in vitamin B12, which makes it an important food for vegans who don’t want to take supplements. Thus, for this small group of people who choose to have a nutrient deficiency, but hate pills, seaweed is a kind of superfood. For everybody else, however, it is just tasty and healthy (as part of a balanced diet). Yes, seaweed generally contains a lot of calcium and iron, but you should be getting those from a variety of sources anyway. Plus – and this is a big problem with superfoods – eating more of one mineral than your body needs may stop it properly absorbing something else. The iodine, fibre and alginate in seaweed have been promoted for weight loss, but the effect, if there is any, is far from proven. Besides, iodine is another thing you don’t want to eat too much of. Iodine toxicity can cause thyroid problems and weight gain. Depending on where it grew, some seaweed may even contain a lot of heavy metals, which – in large quantities – could do you actual harm.
Eco rating In some places, such as the Philippines and Tanzania, mangroves have been chopped down to make way for seaweed farming. On the other hand, seaweed farms may create good habitats for other species. On balance: fine.
Hipster rating Cool as hell, especially if you seem to know anything about it.
I was recently asked by an acquaintance what kind of cancer I had since I’m undergoing chemotherapy. When I informed this person I didn’t have cancer, you would have thought I just told her I was a unicorn flying over a rainbow.
It’s unfortunate there is such a misconception that immunosuppressant therapy is only for cancer patients. This saddens me because it proves there’s a lack of education and awareness concerning autoimmune diseases. If people only really knew what some people endure day in and day out with an autoimmune disease.
Ironically, my husband just overcame kidney cancer without a single dose of chemotherapy, yet here I am doing chemotherapy without cancer. This truly baffles people, and honestly, sometimes it baffles me, too.
Truth be told, I had no clue what lupus was after my doctors first told me about it. I also had no clue that as the disease progressed that chemotherapy was in the treatment plan for me.
Another misconception is that immunosuppressant therapy cures autoimmune diseases, which is not true because there is no cure for lupus at this point. The use of these drugs for diseases such as lupus is to slow the progression of the disease and to help control an overactive immune system with the hope of putting the disease in remission.
Many have asked if lupus is a form of cancer, since cancer patients can also be treated with chemotherapy. No, lupus is not a cancer, nor is cancer lupus.
The dosage of chemotherapy drugs for cancer patients is much higher than for those with autoimmune diseases like lupus and rheumatoid arthritis, although the side effects can be just as severe as someone receiving higher dosages. For myself, I have severe nausea, hair loss and extreme fatigue. Common side effects can include infertility, diarrhea, low white blood cell counts and, of course, those I’m currently experiencing.
I’m only about two months into my chemo treatments. My first round was an IV treatment, and I had an allergic reaction, so we have decided to go the oral route this time.
I have yet to see any positive changes. Rheumatologists agree it can take weeks to months to see benefits of this form of treatment for autoimmune diseases. The benefits are seen gradually.
The more we can provide education on autoimmune diseases, the more people can understand and empathize with our situations. The more people understand the diseases, the more they can understand our treatments.
On good days, my acting skills are worthy of an Oscar. But on bad days, my ADHD pushes me into a dark, quiet personal world that few know exists. Here are 10 circumstances in which I feel overwhelmingly lost, alone, or confused — and no one else has a clue.
When My Thoughts Don’t Translate
I may look just like everyone else, but I know I’m different. I feel the most disconnected and dissimilar when I try — and fail — to communicate my unique perspective. No one understands what I’m talking about; it’s almost as if I’m speaking a foreign language. At these times, I either feel as if I am the only sane and observant person present, or I feel isolated and misunderstood. Or both, especially when I see their eyes rolling as I speak. They don’t say anything, but I know what they’re thinking.
When I’m Alone, But Surrounded
I love people. Conversation is like an indulgent dessert — most days. But on bad days, my racing brain drowns out all sound and paralyzes my brain and my tongue. When I sit among friends engaged in conversation on those bad days, my body is there, but my mind is elsewhere. You think I hear what you’re saying, but all I hear is mumbling. I try to focus on your words, but my darting mind sabotages me. When my emotions are this strong, I have no words. It’s hard to speak; it’s even harder to listen.
When Worry Takes Over
The imagination is a wonderful trait when used for good. But my ADHD imagination has a habit of running wild, meandering down harmful paths filled with negative thoughts that stick like Velcro. Catastrophic images appear. Every situation is accompanied by a what-if, worst-case scenario; and that’s when the spiraling cycle begins. How could the same imaginative power that allows some ADHDers to compose symphonies, paint masterpieces, and develop computer programs, be so crippling? I beat myself up over this some more.
When I Can’t Physically Relax
I dream of sinking into a comfy couch and just relaxing my whole body — feeling totally comfortable and content. It’s such a simple pleasure that I’ve never known. I’m always adjusting my legs, arms, back… one minute I’m fine, but a moment later, the chair is stabbing me in the back or the pillow is too soft. I’m restless. I squirm constantly. I know people are looking at me, but how can I begin to explain the discomfort of having senses in perpetual overdrive? It’s easier to keep my discomfort to myself. But this can make it hard to enjoy being with others. My discomfort takes up space in my mind, and I’m sure I’m not fun to be with when I’m constantly complaining. It’s easier to stay home and hang out in a baggy shirt and drawstring pants.
When My Senses Overload
On a recent trip to a vineyard, my friends and I were driving down a very narrow dirt road in a beat-up old rented van that wouldn’t go in reverse. When we became wedged between barbed wire and bushes scraping the side of the car, I panicked. We weren’t in danger, but I began screaming out loud, “Get me out of here! Help!” Everyone else was fine. One person was laughing. Another one was quiet. Not me. I was screaming, despite the fact that I was safe and with friends. They still love me. But boy, did I feel embarrassed. Some days it would be nice to react normally to small setbacks and sensory challenges.
When Focus Just Won’t Come
ADHD is frustrating. People don’t understand why I can’t focus when I need to. “Just do it,” they say. Really?!? I am. But as I focus, new ideas emerge like shooting stars, bursting through my mind. I can’t ever find a quiet space to focus because my mind is so noisy and busy all the time. Even when its bandwidth is full and I feel overloaded, my brain is capable of receiving more data. This is when my focus wanders, and I feel isolated, alone, and misunderstood.
When I Feel Like a Fraud
I doubt myself. I may appear tough on the outside, but inside my mind I’m criticizing every action, every word, and every decision I make. Behind the façade, there is a woman who feels misunderstood. I act as if I’ve got it together, and sometimes I do. But there are many times when I feel like a fraud and my mind begins telling me, “Who am I kidding? The truth will come out. People will see how incapable I am.”
When I’m Fighting My Own Mind
ADHD is a largely invisible condition (except for those times I run around the house frantically searching for my keys, of course). Everyone has an invisible self, but most people seem to behave according to their thoughts. People with ADHD, on the other hand, have so many competing thoughts vying loudly for attention and action in our brains that it becomes hard to move. Our speeding minds freeze our bodies because we don’t know where or how to begin. At the times when bombarding thoughts physically disable me, I have no choice but to stop and reset. Observers might assume I’m being selfish or slow or lazy, but I challenge them to spend 10 minutes inside my head without a time-out, too.
When My Inner Struggle Feels Endless
Oh, if only others knew the battle I fight all day. “I want” is in constant combat with “I should” in my brain. My adult self knows what I should be doing, but the child inside me says, no. I watch other adults performing responsible tasks like paying bills, making appointments, doing laundry, and managing mail. But for me, those “simple” tasks can easily cause me to fall into the black hole of shame and guilt. At those times, paying a bill is not paying a bill; it is coming face-to-face with a lifetime of financial disorganization that can’t be fixed in an afternoon.
When I Forget My Survival Systems
In spite of the intense internal struggle of ADHD, I do mostly maintain a healthy, responsible lifestyle THANKS to prioritized self-care. Even though the simple tasks continue to challenge me, my systems help me function and keep me on track. ADHD is never easy. But with self-awareness — knowing my strengths and knowing how to manage my weaknesses — ADHD is easier to live with. The trick is trusting in those systems and that self-awareness when you need them most.
Following an Atkins-style diet may make you thinner but it won’t make you healthier, research suggests.
A study found that when women lost excess weight by eating a high-protein, low-carbohydrate diet they appeared to forgo some of the usual health benefits, including those linked to diabetes and heart disease.
Bettina Mittendorfer, a professor of medicine, who led the research at the Washington University School of Medicine in St. Louis, said: “It’s not that the metabolic benefits of weight loss were diminished – they were completely abolished in women who consumed high-protein diets, even though they lost the same, substantial amounts of weight as women who ate the diet that was lower in protein.”
Swapping bread and potatoes for steaks and chicken breasts – as promoted by diets like the Atkins, Dukan and Paleo diets – is supposed to help people lose weight because protein-rich foods are believed to make you feel fuller quicker.
The idea that a high-protein diet encourages fat loss rather than muscle loss has also entered dieting folklore – although the latest study suggests that it does not make much difference to this.
“When you lose weight, about two-thirds of it tends to be fat tissue, and the other third is lean tissue,” Mittendorfer said. “The women who ate more protein did tend to lose a little bit less lean tissue, but the total difference was only about a pound. We question whether there’s a significant clinical benefit to such a small difference.”
The study, published on Tuesday in the journal Cell Reports, involved 34 women with obesity who were aged 50 to 65 years. Although all of the women had body mass indices (BMI) of at least 30 (30 or more indicates obesity) none had diabetes.
The women were divided into three groups: a control group, who were asked to maintain their weight, a second group who followed a weight-loss diet with recommended daily protein intake (0.8 grams per kilogram of body weight) and a third group who ate a high protein weight-loss diet with 50% extra protein. By the end of the 28-week study all the women had lost roughly 10% of their body weight.
“We found that women who lost weight eating a high-protein diet didn’t experience any improvements in insulin sensitivity,” said Mittendorfer.
Insulin sensitivity is an important health measure because in many people who are overweight insulin becomes less effective at controlling blood-sugar levels, which can ultimately lead to type 2 diabetes.
The women who ate the recommended amount of protein saw big benefits in metabolism, led by a 25 to 30% improvement in their insulin sensitivity. Such improvements lower the risk of diabetes and cardiovascular disease.
The scientists said it was not clear why insulin sensitivity didn’t improve in the high-protein group, but suggested that it could be linked to the body essentially having to flush out “excess fuel”.
The scientists also said it was possible that the high protein group did improve on other health measures that they had not studied, such as joint pain.
Mittendorfer said she was concerned about an increasing number of foods being marketed as high in protein. “We push protein into foods that are not traditionally high protein … like cereals,” she said. “Potentially this could be harmful.”
• This article was amended on 14 October 2016 because an earlier version said that a body mass index of 30 or more indicates significant obesity.
My heart is broken, not for me, but for a fellow MS advocate who has personally invested so much to help advance MS research and care. This person, who happens to have a very aggressive progressive form of MS, has been public about the challenges, and even produced an award winning documentary about life with MS. That was just a few years ago, and there was a wonderful love story interwoven into the documentary that gave everyone hope that this would not be a solo journey.
Then a few days ago I caught the most recent installment of this person’s ongoing video journal about life with MS and was confronted with the news that the partner who stood up and vowed ‘til death do us part, and knew full well that multiple sclerosis was the third partner in the relationship from the day they met, had left. Not only left, but also left with their child and moved thousands of miles away.
The latest video installment focused on this loss and how even in the roughest times, this toddler was able to make people smile, if only for a moment, and temporarily forget about the MS. This absence is the saddest part of this fractured relationship.
Now I have no personal knowledge of what went wrong in this story and can only create a multitude of scenarios in my thoughts. But I keep coming back to the thought that perhaps sometimes love just isn’t enough.
When I look at the weight carried by caregivers of people with various forms of MS, I wonder if I would be up to the task. It’s easy to love a newborn baby who is dependent and needs us for all of their care, including feeding and diapering and nurturing. Would I be up to loving in that way to an adult partner with similar physical needs?
I also have to wonder the opposite – if I needed 24/7 care, would I be the kind of person who could still give love and not just be on the receiving end. Would I be able to get beyond my own needs and allow my partner to feel loved in a special way and not just as my custodian?
Unfortunately this story is not unique and I have heard all too often of people being left by their partner for a variety of reasons. It’s important to recognize that even though this known MS advocate is experiencing emotional pain, there are many others who are also facing the same sense of rejection and abandonment. The broken feelings I had when I heard this recent news are no greater than what I feel when I correspond with other people with MS who are also facing a future alone.
I can only hope that if I were to find myself in a similar situation on either side of caregiving, love would be enough to help me carry on. I recognize it is much more complex, but loving someone is surely the critical foundation of all relationships and I hope it would be enough.
It’s the engine, not the caboose, that kills you is actually a saying that’s used in Alcoholics Anonymous as a warning against taking that first drink – which can lead to the second, and third and so on. It was also used by Jack Cush, MD, a preeminent rheumatologist in a recent article. One of the themes of the article is that in focusing on the potential side effects of treatment, we forget that the greatest health risk is the disease itself.
This struck me as fairly profound because as much as I read about patients being concerned about the possible downside of treatment plans, I don’t read nearly as much about the downside of not treating the disease.
There is no question that having an RA diagnosis and starting a long-term treatment plan can be life changing. Moving to a biologic or even changing to a different biologic drug can be stressful or even frightening. Anyone who has read the patient information (including those discussing side effects) probably feels very justified in being cautious. Even a more natural-based treatment plan based on diet and supplements can be daunting and have potential unwanted impacts.
But there are a couple of things to consider.
The first is that general patient information gives you the possible side effects. However, most patient-level information doesn’t disclose what the actual chances are that you might develop them. Serious incidents are actually rare events and may only occur about once in every 1,000 patients. At that rate, these drugs are fairly safe and are, in fact, much safer than having uncontrolled inflammation in your body. That’s the second and most important thing to consider.
Common lab tests for RA patients check for inflammation and may include things like erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP). These tests measure inflammation not just in your joints, but throughout your body and they’re the same tests used to evaluate risk factors for things like heart disease and stroke.
The fact is that while its effects are most frequently seen in our joints, RA is a systemic disease. This means that it extends throughout our bodies and can cause inflammation anywhere. According to Dr. Cush and other newsworthy experts, when inflammation becomes chronic it can damage heart valves and brain cells (think heart attack and atherosclerosis), trigger strokes, and promote resistance to insulin, which can lead to diabetes. Inflammation also is associated with the development of cancer. Inflammation may not have been proven to cause all of these issues, but inflammation is unquestionably a common factor.
I’m the first to admit that having RA is a scary thing with major consequences. Thanks to RA I’ve had a lot of surgery including three joint replacements and two spinal fusions and had to retire early from a career I loved.
However, failure to control the inflammation that comes along with RA can have even more serious consequences. It’s important that you and your health care team determine an effective plan that works for you. Remember, it’s the disease, not the treatment plan that’s the enemy.
The volatile (and sometimes destructive) emotions associated with ADHD can manifest as frustration, sensitivity, or tendency to depression. Here’s what you should know to control it.
You can’t manage the impairments of ADHD until you understand how you process emotion. Researchers have ignored the emotional component of ADHD because it can’t be measured.
Yet emotional disruptions are the most impairing aspects of ADHD at any age. Find out how your emotions affect your life and happiness and how you may be able to manage them.
Sensitive to Criticism
Nearly everyone with ADHD answers an emphatic yes to the question: “Have you always been more sensitive than others to rejection, teasing, criticism, or your own perception that you have failed or fallen short?” This is the definition of a condition called rejection-sensitive dysphoria (RSD), which many ADDers experience.
Depression and RSD
For many years RSD has been the hallmark of what is called atypical depression. The reason that it was not called “typical” depression is that it is not depression at all, but the ADHD nervous system’s instantaneous response to the trigger of rejection.
Disapproval from Others
The emotional response to failure is catastrophic for those with the condition. Perceived criticism and withdrawal of love and respect is just as devastating as the real thing. The term “dysphoria” means “difficult to bear,” and most people with ADHD report that they “can hardly stand it.” ADHDers are not wimps; disapproval hurts them much more than it hurts neurotypical people.
Always Tense and on Edge
Many ADHDers say the same thing when you ask them about their emotional life: “I am always tense, I can never relax. I can’t just sit there and watch a TV program with the rest of the family. Because I’m sensitive to other people disapproving of me, I am fearful in personal interactions.” Most kids after age 14, don’t show much overt hyperactivity, but it’s still present internally.
How the Pain Expresses Itself
If emotional pain is internalized, an ADHDer may experience depression and loss of self-esteem in the short term. If emotions are externalized, pain can be expressed as rage at the person or situation that wounded them. Luckily, the rage is expressed verbally instead of physically, and it passes relatively quickly.
ADHD Emotion: How It Affects Personality
Because of the ADHDer’s sensitivity to emotional pain, the person might become a people pleaser, always making sure that friends, acquaintances, and family approve of them: “Tell me what you want, and I’ll do my best to become it. Just don’t get mad at me.” After years of constant vigilance, the ADHD person becomes a chameleon who loses track of what she wants for her own life.
ADHD Emotion: How It Affects Behavior
Some ADHDers find that the pain of failure is so bad that they refuse to try anything unless they are assured of a quick, easy, and complete success. Taking a chance is too big an emotional risk. Their lives remain stunted and limited.
ADHD Emotion: How it Affects Relationships
RSD can wreak havoc on relationships. Since the wounds of RSD are almost unbearable, the only way to deal with the situation is to deny that the person—teacher, relative, coworker, or spouse—who is rejecting, critical, or teasing has any importance to the ADHD person. Rather than suffer more wounds at the hands of an authority figure, he devalues the importance of the other person. The ADDers has to find occasions several times a day to remind the other person how worthless, stupid, and even harmful they and their opinions are.
Treating RSD: Counseling
Clinicians and therapists need to be especially vigilant for signs of RSD because most ADHDers have learned to hide that aspect of their lives. It is vital to proper diagnosis and successful therapy that both therapist an patient are aware of the emotional intensity that is so much a part of the patient’s life. It is equally important to recognize when a patient is attempting to hide this component of their emotional lives out of fear that being wounded further if the truth were known.
Treating RSD: Medication
Until recently all that a person can do was to wait for his dysphoria to dissipate over time. Clinical experience has found that up to half of people with RSD can get some relief from the alpha agonists, either clonidine (Kapvay) or gaunfacine (Intuniv). Talk with your doctor about these medications.