MS med makes cold worse?

I never get annual flu shots because I don’t want to help my immune system in any way. I’m at war with my immune system to a certain extent because it is at war with me.
 
So when I got this cold at first I kinda thought it was cute, because my immune system seems like such a bully.
 
But now three weeks into the monster cold — which I only call monster cold because I don’t usually get colds — it has lost its charm.
 
Seldom sick as a kid
 
I was never a very sickly child. I had chickenpox once, and mumps, which kept me out of school for the requisite time but I was not prone to getting regular colds.
 
As a young adult, I did occasionally catch whatever was going around, but was never down for more than a few days.
 
Once I was diagnosed with MS, though, I noticed how rarely now anything makes me sick. I assume that this is evidence that my immune system is superstrong and to be fought against as it is attacking me by misguided accident.
 
But now obviously my immune system is not in super mode.
 
Gilenya works
 
The fact that I got this cold suggests to me that the current MS med I’m taking is doing it’s job for me, thwarting my immune system by restraining lymphocytes from being released by my thyroid. (See previous post on Gilenya.)
 
However, it is driving me nuts not being able to speak. My laryngitis was so bad at one point: I had called customer support for my new HP laptop and it was voice-response only. It couldn’t figure out what I was asking for. Frustrating.
 
A friend gave me a bottle of Echinacea left over from when she was fighting a cold.  But it’s from 1997 and in small print on the side it says “Not recommended for individuals with auto-immune conditions.”
 
And while there is now some debate over whether MS is in fact an auto-immune disease, I prefer to err on the side of caution.
 
Does OTC negate it?
 
I’m not sure if avoiding taking any cold medication is the wiser decision here.
 
My doctor did advise me that “being on Gilenya doesn’t mean you can’t take symptomatic cold remedies.” But he also concedes that it is “(h)ard to relate this particular problem to Gilenya…”
 
So do I risk feeling better and maybe blocking the great work this drug is doing?
 
I think I’ll just go back to bed and think about this tomorrow!
 
Things I’ve learned this week
 
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Chronic illness & bullying

bul·ly  |  ˈbo͝olē  |  noun.
a person who uses strength or power to harm or intimidate those who are weaker
 
My first run-in
 
In sixth grade, I started at a new school with some, but not all, of my classmates. As part of a program for faster learners, I was moved to the junior high school to merge with other smart kids from a handful of different local elementary schools.
 
My best friend from the neighborhood — I’ll call her Deirdre — was a year ahead of me in school. So this was a new school for her, too. And she was a little surprised and irritated that I was there with her, a year before I was supposed to be there.
 
I was a smarty-pants. She now hated me. And with several of her new friends, she began showing up at recess calling me names, taunting me, and hinting at violence to come.
 
Present day
 
Bullying can happen in any relationship. Add chronic illness to the equation and the level of frustration can be overwhelming. This abuse aims to render physical or psychological harm to another.
 
Although we usually think of domestic violence when we think of abuse, there are other, less obvious forms. Abuse can be verbal, where “cruel, demeaning language is aimed at another person.”
 
It can be neglect, “when a person is deprived of essential care…or opportunities to engage with the outside world.” Or even just handling a person roughly or aggressively while assisting them.
 
Whatever the form, bullying and abuse are not acceptable, and should not be tolerated.
 
Dependence
 
An article by the Mayo Clinic points out that “Bullying was once considered a childhood rite of passage.” But today we realize that it can have like a lifelong effects in someone’s physical health, self-esteem, and emotional well-being.
 
Today, as an adult with chronic illness, I depend on friends and family to do for me. Most of the time I use a wheelchair to get around so I am constantly in situations of “perceived power imbalance.
 
But I also realize that I can be a bully, too. The MS Society cautions that our caregivers “can be abused by a person with MS who uses foul or demeaning language or lashes out with sharp fingernails or a cane or crutch.”
 
We need to remember that life with chronic, unpredictable disease can be challenging not only for us but also those who love and care for us. It helps to occasionally stop and put yourself in the other person’s shoes.
 
Conclusion of junior high bullies
 
In junior high, the daily abusive behavior was confusing and upsetting. The power imbalance was clear: three older kids with shrewd awareness against a younger, naive and seemingly impertinent one. 
 
Later that week I cried to my parents about it and together we came up with a plan.
 
I started calling out a hearty greeting to Deirdre by name whenever I first saw her group advancing. This had the effect of dissolving their angry demeanors into teen-girl giggles. Which I suspect embarrassed them.
 
Whatever the case, after several days of this, they lost interest in me and I never heard from them again.
 
What I learned this week
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My MS in September

I used to love buying new school supplies even after I graduated. Like paper for the printer and pens and notebooks for a new journal. And colorful folders and sharpies and glue and glitter. Ah school supplies! 
 
Anyway, enough of my reverie. Back to the post at hand. I usually have a set routine in the morning that goes kinda by the wayside during the summer, and especially now because I’m between jobs; I’ve kind of let it lapse.
 
But now it’s September and back to routine so I thought I would share my morning routine with you:
  1. I wake up in the morning, wiggle my toes and put my knees to my chest and rock side-to-side a little bit.
  2. I sit up and hang my legs over the side. I bend over, touch my toes, then back up a few times just to get the blood kind of going.
  3. I turn off the white noise machine next to my bed and turn on the light there which I leave on for the rest of the day
  4. From the drawer next to me I retrieve the pill container where I keep a weekly supply of pill doses (I take stuff twice a day). I swallow my Gilenya and a few other meds and supplements in the morning using the waterbottle that I keep on my nightstand and refill as needed.
  5. Then I scoot the wheelchair over to the side of the bed and maneuver myself into it 
If the bed is dry I will just pull the covers up and smooth the duvet cover over everything. This is how I make my bed now. Otherwise I will remove the “chux” (see below!) to handwash in the sink, then make up the bed.
 
I now sleep with chux which are (these https://www.parentgiving.com/shop/reusable-underpads-30/c/ ) reusable bed pads for when I leak during the night. 
 
This is the sexy reality of my life: I have a leaky bladder (this is what we are currently calling incontinence? Uh, OK…) It is the bane of my existence and the most embarrassing symptom I have right now.
 
I roll myself to the bathroom and do my morning ablutions. If I have items to handwash, I start a sink full of warm water and good smelling, no-rinse Soak then throw them in.
 
Finally I eat something green before even having coffee (i’m keeping a bowl of frozen peas mixed with nuts, dried cranberries, and a few chocolate chips, moistened with salad dressing and eat a few spoonfuls while the water is heating), then have oatmeal with walnuts before anything else.
 
I only have 1 cup of coffee (have I mentioned my leaky bladder?), then have tea, cocoa, bouillon, cider or just plain water the rest of the day. 
 
Eating something green first thing in the morning is the most recent habit I have added to my routine. It’s my concession to The Wahl’s Protocol. Next I want to add some regular daily meditating somewhere in there!
 
Things I’ve learned this week
  • Reusable bed pads are called chux.
  • It’s okay, may be preferable, to eat apple seeds, so core and all.
  • The Bletchley Circle (BBC TV series) only ran for two seasons from 2012-2014 but the concept was apparently tried in the US with The Bletchley Circle: San Francisco in 2018.
  • Waterpik Water Flosser replacement tips should be replaced every six months, and if you buy one at a garage sale you should replace the existing one immediately! (Also you can download a user manual at the company’s website.)
  • Most peppers are not overly spicy but the ones with the black seeds are hot! Use gloves when removing the seeds and don’t rub your eyes!

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Lightbulb. Skin is an organ

 
I have never really taken care of my skin. I never got acne, just the occasional pimple. I washed my face at least once a day with Phisoderm or Cetaphil, gentle cleansers.
 
I didn’t moisturize regularly, and applied sunscreen only when I planned to spend the day out doing some activity, like skiing or going to the beach. 
 
But this article made me think about my skin as an organ. According to researchers, it is our largest organ, roughly 8 pounds (3.6 kilograms) and 22 square feet (2 square meters).
 
Could it be affecting or partially responsible for my MS? How could it not?
 
Medline
 
I poked around in the National Library of Medicine’s  PubMed* search: [(skin[Text Word]) AND multiple sclerosis[MeSH Terms]], but didn’t see anything relevant. Mind you, I’m not a scientist or expert in medicine. Caveat Emptor! 
 
*PubMed comprises more than 29 million citations for biomedical literature from MEDLINE, life science journals, and online books.
 
 
I did see at lot of discussion about MS and sympathetic skin response (SSR) as diagnostic test. The SSR test measures whether the sympathetic nerves of the skin are working.
 
Apparently in a lot of MSers, the response is absent in one or both limbs, for example. In healthy subjects the response is always there. This is interesting, but not something I think I could fix!
 
Google search
 
Next I tried an internet search. Again I found nothing MS specific, although there are some warnings on various drugs about possible skin cancer. Meaning that some subjects began showing skin cancer during or after the trial.
 
There is no way to tell if the skin cancer was already “on board” before the trial started. Or if the drug made them more sensitive to the sun.
 
 
So there is some involvement there!
 
Ergo
 
Yet again I find interesting (to me) information, but nothing conclusive. Just a vague hypothesis: I think I should be taking care of my skin better.  But who knows what that means?
 
For now, I will just accept prevailing theory until proven otherwise. So I resolve to craft a regular, daily, non-negotiable skin care routine, something like this:
  1. Wash my face once a day, every night. Don’t over wash and risk drying out the skin, causing it to produce more oil.
  2. Shower, wash hair at least once a week. Gross I know, I used to shower daily but it’s hard now. Plus I read this and this
  3. Wash my feet every night before bed, slather with lotion
  4. Slather body lotion daily – moisturize, moisturize, moisturize
  5. Use sunscreen daily or at least before venturing outside anywhere
  6. Ask your GP to include a regular skin cancer check in your annual, or see a dermatologist. Some doctors recommend every year!
  7. Drink lots of water
All this is based on my gut feeling about the right thing to do for me. Your results may vary! 🙂
 
Other stuff
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MS and hot cocoa

Hey, did you read the article that hot cocoa made with high-flavonoid chocolate could ease MS fatigue? I have MS fatigue. I like cocoa. This sounds like a recipe for an informal experiment!
 
The headline of the article I read is Daily Cup of Flavonoid-rich Cocoa May Help Ease MS Fatigue. It details a small trial of 40 MSers, half daily drinking high-flavonoid cocoa made with rice-milk and half drinking low-flavonoid cocoa. (Was the choice of rice-milk just a nod to food allergies?)
 
Fatigue was measured by a quality-of-life self-report, and fatigability was measured by a six-minute walk test (i.e., how far could a user walk in six minutes).
 
The trial concluded that the high-flavonoid cocoa was not only linked to heart and gut health but may “improve fatigue and fatigability” in MS.
 
What is a Flavanoid?
 
They are a type of plant-based antioxidant that occurs naturally in fruits, vegetables, wine, and tea, and are responsible for the vivid colors found in produce, for example. Studies have suggested that flavonoids have anti-inflammatory and neuroprotective benefits.
 
One place they are found is in cocoa beans. Usually the cacao tree produces the beans that are then roasted and ground into a paste called the cocoa solids. 
 
Thus, cocoa solids are a good source of flavonoids and the percentage of solids in the product should be listed on the side of a package. You can use this number as a general guide for choosing chocolate made with the highest concentration of solids. 
 
Unsweetened cocoa powder has 88 to 96 percent cocoa solids, for example. Dark chocolate contains 45 to 80 percent, and milk chocolate has only 5 to 7 percent, as the solids are “watered down” with sugar and milk. White chocolate doesn’t contain any.
 
(Was low-flavonoid cocoa achieved by replacing solids with “artificial flavors”?)
 
What about Heat?
 
As cozy as a cup of hot dark chocolate cocoa before bed sounds, it probably isn’t the optimal way to get your flavonoids. According to researchers, boiling causes the highest loss of antioxidants in vegetables, for example.
 
The length of time you expose foods to heat can significantly impact the antioxidant content. 
 
And imagine the roasting process by which the cocoa bean is converted to a cocoa solid. Although roasting is considered a “dry cooking method” and one of the best ways to retain nutrients, it may be reducing antioxident content by as much as 60%.
 
This shouldn’t matter much to us, as the cocoa we buy in the stores has the solids number on the label. But then again, researchers have discovered in some studies that the labeled cocoa content of the chocolate did not always reflect analyzed levels of flavonoids. Sigh.
 
Bottom line
 
This was a small study; more research is needed of course. But it seems like a thing that would definitely qualify for a go.fund.me effort. Hot cocoa is pretty much universally liked.
 
If you don’t like dark-chocolate cocoa, a square from a dark chocolate bar upon waking seems like it would help. If you want a higher flavonoid count, try making your own cocoa with unsweetened cocoa powder.
 
Maybe it is just a quality-of-life thing. Having a cup of cocoa every day makes you happy. We deserve that. 
 
And even if you only drink milk-chocolate cocoa, as long as there are some solids in it, you are getting a few flavonoids. 🙂
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Caustic Copaxone

My liver toxicity from Avonex meant that I couldn’t take anything else with interferon, ruling out all other MS drugs at the time, except for one: Copaxone.
 
Copolymer-1, as the chemical was originally called, was discovered by scientists in the 1960s in Israel. Again, I don’t know what they were looking for, but they discovered that it suppressed MS-like disease in mouse models.
 
[As an aside, this is called Experimental Autoimmune Encephalomyelitis (EAE), still accepted today as a murine model for this disease. Interesting because MS doesn’t seem to appear in the animal kingdom, or maybe their lives are just too short to foster development of a slow-progressing disease like this. So scientists needed an animal model to study and use in tests. But we still don’t know what causes human MS, so the thing researchers use to induce it in animals may sometimes cause unintended consequences hard to tease out (i.e., was our result due to the mechanism of the disease itself or a reaction to the variable, which is not found in human subjects?) Something to make you go “hmmm”. ]
 
Drug development continued and it was finally approved for the Relapsing-Remitting form of MS (RRMS) in 1996.
 
How It May Work
 
Now known as glatiramer acetate (brand name Copaxone), it is a synthetic (man-made) protein that mimics a component of the myelin sheath and seems to block damaging cells, though the process is still not understood.
 
Some researchers believe that it acts as faux material to lure and distract the attacking cells away from their real target, but others believe it actually alters the body’s immune function itself.  Concerns about this persist but there is no evidence yet to prove it.
 
Anyway, my neuro switched me to this. I administered myself sub-cutaneous shots of 20mg daily for 7 years, from June 2003 until July 2010.
 
More recently the FDA has approved a newer 40mg dose injected only 3 times a week, and there are some reports that those taking the higher dose less often have fewer side effects. But the lower dose and schedule are still used as well.  
 
Ugh
 
I’m not sure if I would’ve welcomed news of a less frequent dosing option. I hated the shot I took everyday, and I doubt a higher dosage less often would’ve made that much difference. 
 
I rotated injection spots on my body as I was instructed, but no matter where I shot, it felt like I was injecting acid. 
 
For the first few years, I tried to dutifully apply ice packs to the area, both before and after it, as I was told, but it always seemed to make it worse.
 
Finally one day I tried heat instead. Ahhh, the relief!
 
Who’s In Charge Here?
 
Wanting to check that I wasn’t harming things, I called the helpline. But the nurse on the other end told me that she hadn’t received any information ether way. But as far as she understood it, it wasn’t affected by heat.
 
We decided that if a heating pad worked for me, I could continue doing it until I heard otherwise.
 
And as I was looking over new prescribing documents about this drug, I found this: “Before use, allow the solution to warm to room temperature.” Doh! Why didn’t I think of that?
 
Helpful tip: Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist whenever you get a new medicine.
 
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Ack, hepatitis!

In June 2003, 2-1/2 years after I had started Avonex, I developed a liver toxicity to it and was advised to stop it immediately. My medical chart read “elevated liver enzymes/hepatitis”!
 
Apparently, this is a fairly rare occurrence (1-2% of patients), but requires “prompt discontinuation of therapy.” Sigh.
 
The Organ 
 
The liver is described on WebMD as “a large, meaty organ that sits on the right side of the belly. Weighing about 3 pounds, the liver is reddish-brown in color and feels rubbery to the touch.”
 
It goes on to say that “The liver’s main job is to filter the blood coming from the digestive tract, before passing it to the rest of the body. The liver also detoxifies chemicals and metabolizes drugs. As it does so, the liver secretes bile that ends up back in the intestines.”
 
[As an aside, this is an interesting realization to me considering that today there is a lot of focus on the “gut microbiome” and its role in MS.]
 
Liver Toxicity
 
Anyway, the ER doc drew several vials of blood and then ordered me home to await the results. Based on my yellow-ness, he was expecting to have to admit me to the hospital.
 
Luckily the tests came back as “consistent with damage from toxins, probably medications” and no hospitalization was required. But I was directed to stay home from work on short-term disability while my liver recovered.
 
I also had to go for biweekly blood tests for the next two months, then monthly for the rest of a year. 
 
I actually got “get well” flowers from work, and after five weeks returned to my full-time duties, good as new.
 
The Biopsy
 
In Sept. I had to have an out-patient liver biopsy to make sure this was just a drug-induced hepatitis. The ruling was that any interferon –which was almost all of the MS drugs at the time– were now off-limits to me.
 
While doctors assured me that my liver enzyme levels had gone back down to normal, I wondered if I could help keep it that way. So I did a little online research on which foods and supplements might help.
 
I now regularly drink green tea (but studies show coffee may also be prophylactic), eat nuts and other mono-unsaturated fats, and try to limit my carbs and alcohol intake. (For example, I learned that the liver needs 2 weeks alcohol-free to heal.)
 
The liver is arguably your hardest-working organ, takes a lot of abuse and is one of the easiest to damage. Luckily, it is able to regenerate itself better than any other, too, so it is important to take care of it!
 
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Anxious Avonex

In December 2000 my doctor and I decided to start me on Avonex.
 
A younger sibling to Betaseron, Avonex was approved by the FDA in May 1996. It is also an interferon – beta 1A versus beta 1b – and it works in a similar way, attempting to tamp down the inflammation in the brain.
 
But again, even today, the way it works in MS is not known.
 
And as far as the availability of a generic, it is a “biologic” drug which means it is made from human or animal materials (complex biotechnological process) rather than through a chemical manufacturing process.
 
Starting Regular Deliveries
 
Most people who take any of the interferons “will have flu-like symptomsearly in the course of therapy (emphasis mine). So the instructions recommended I take it with something like ibuprofen to reduce the expected fever. 
 
These days it comes in other forms, like a prefilled syringe or even an epi-type pen, but back then each dose came as a kit with a vial of powder, a “diluent” (water), a syringe and needle, plus various small packets of rubbing alcohol and bandages.
 
My regular deliveries also included a small sharp’s container for disposal of used syringes and needles.
 
Learning to Inject Myself
 
Avonex would require that I give myself a shot every week.  So naturally I asked my friend and neighbor to join me at the training session so we both could administer it to me.
 
It was kind of eye-opening that sticking a needle into an orange was so similar to giving myself a shot. I was surprised at how easy it slid into the skin. I don’t know why but I expected some resistance! 
 
The nice thing about Avonex is that it is a weekly injection. So I never had to alternate injection spots.
 
But one problem I had at that time was what to do with the full sharp’s containers. There didn’t seem to be a standard procedure for how to dispose of needles, much less a sharp’s container.
 
Now I notice an instruction on the directions: “Check with your healthcare provider about the right way to throw away the container. There may be local or state laws about how to throw away the used syringes and needles. “
 
My First Shot
 
The first time I did my injection I deliberately did not take it with ibuprofen because I wanted to see how severe the fever would get. Lo and behold, it did.
 
Later I was scolded by a doctor friend of mine. She said that since fever is a warning signal to the body, and since I had been warned to take something with the injection for just that, I should’ve just done it to begin with! I always did after that.
 
But I never could learn to inject myself with ease. Every week I sat holding the shot in my hand above my thigh willing myself to just plunge it in.
 
I Develop Jaundice
 
Then one day I couldn’t keep my breakfast down, vomiting. Next I was walking by the mirror and I noticed that my eyeballs were yellow. So I went to an emergency clinic where I was diagnosed with severe liver toxicity. I was told to stop the Avonex immediately.
 
Unfortunately this meant that any interferons were now off-limits to me. That was most everything else on the market for MS at the time. But not everything.
 
Next up, Copaxone.
 
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Before Betaseron

In 1991 I was 26 and working as a waitress in a local pub.
 
I started to get brief moments of what felt like a buzzing in the back of my head that prefaced a loss of all strength; whatever I was carrying I dropped. Eventually it was happening every ten minutes or so and lasted for about 20 seconds.
 
Unbeknownst to me, the neurologist I had been sent to suspected I had MS. In those days an MSer was usually only given a possible diagnosis on the first visit, then probable based on observation of repeated incidents over time. There wasn’t even a test to definitively diagnose it.
 
The MRI
 
But it just so happened that there was this newfangled machine called a magnetic resonance imaging (or MRI) machine that would work like an x-ray but better. It would show him detailed pictures of what was inside my head. And he wanted me to go get a scan from this machine.
 
It was still so new (and expensive) there was only one in the entire SF bay area. When I got there the tech just told me they would do it twice: once as-is and the second time they would inject me with dye and scan again.
 
I laid in the machine and heard all this banging around me and contemplated what they were seeing and waiting for the injection. But after the first round of scans the tech came back and said they were done and I could go home.
 
The quasi-diagnosis
 
I realized later that they didn’t give me the second scan with the dye because they didn’t need to, that they could see the lesions without it.
 
Anyway, the doctor told me I had probable MS. Even with the confirmation of the MRI, which could show multiple brain lesions in a live person as opposed to autopsy after death, the presence of multiple lesions only mostly confirms it.
 
And at the time there was no treatment, nothing they could do. He told me all he could recommend was that I go home and move to the first floor and prepare for a possible wheelchair future.
 
The new era
 
Then in 1993 just two years after I was diagnosed, the FDA approved the first drug for MS, now known as a disease modifying treatment (DMT): Betaseron. It is produced by Bayer Healthcare Pharmaceuticals but even today they still don’t understand exactly how it works.
 
Researchers do know it is a protein produced naturally by the body in response to viral infections. And that one of the things it does to cells in the nervous system is to direct them to produce less pro-inflammatory and more anti-inflammatory agents.
 
They believe that by reducing inflammation in the brain, we will ease the still unexplained attacks by our own immune system on the myelin sheaths that insulate the fibers that connect our neurons.
 
(phew, I can see I need to back up and do a future post on the nervous system!)
 
What I concluded
 
For this story the point I’m trying to make is that the delivery system of this drug (a sub-cutaneous self injection every other day) seemed too extreme for the 26-year-old me since I had no symptoms. Also it was a brand new drug. I didn’t want to be a guinea pig. I thought it was fine to wait. I was wrong.
 
Next time: Anxious Avonex
 
As always, tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.
 
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How to thank a caregiver

Family caregivers give a lot and don’t always get much in return. As much as they love the people they care for, the work involved in family caregiving can be exhausting. 
 
It is estimated that over 40 million people in the United States are unpaid caregivers to an adult family member or friend. That’s like 21% of the population! 
 
According to the National Alliance For Caregiving, “care delivered by informal and family caregivers add up to $257 billion each year.”
 
Since the count of MSers is now recognized as close to 1M, it would be interesting to see what the numbers are for those caring for someone with MS or another chronic illness.
 
And although the majority of family caregivers are women, more and more men are becoming caregivers too.
 
Imagine How They Feel
 
If you live in the same house as your caregiver, be aware that they may often feel invisible. Everyone’s attention can seem to always go to the MSer, causing them to feel that no one cares about them. Many say, “no one even asks.”
 
Also research shows that the “emotional stress of caring has little to do with the physical condition of the person with MS or the length of time the person has been ill. Emotional stress seems more related to how “trapped” caregivers feel in their situation.”
 
Just know that caregivers give a lot and don’t always get much in return. As much as they love the people they care for, the work involved in family caregiving can be exhausting. 
 
“The most successful carepartners welcome and appreciate the practical and emotional support of other people,” says the NMSS. Also, they “don’t give up the activities or hobbies they enjoy.”
 
What can I give
 
How can you show appreciation to your caregiver? Simply asking them is a great place to start.
 
Other ideas
  • Express your gratitude out loud and often. Brag to others about your caretaker.
  • Write out a note or card. Taking time to hand-write why you appreciate your caregiver can be very meaningful plus it gives them something with kind words they can reread in the future.
  • Suggest a coffee-break or cup of tea. In fact, encourage your caregiver to take breaks. Make sure they are taking time to fill their own tanks so they have the energy to take care of you.
  • Celebrate National Caregiver’s Month (November in the U.S.). It’s an opportunity to draw attention to the needs of all caregivers.
  • Show interest in the things that your caregiver is interested in. It shouldn’t only be about you.
  • Share jokes with each other. There is power in a good laugh. Try to do it at least once a day.
  • Find support services or even classes that might be right for them, or figure out a service they can use to outsource one of their regular chores.
  • Offer to help them with a task you know you can take on. Or, when visitors come, make the most of your time: be prepared with a short list of to-do items you need help with.
  • Try to temper your emotions, maybe make a conscious effort to be cheerful.  Facing perpetual crankiness can be draining.  Remember that your caregiver is not your therapist.
  • For paid help, you can give a bonus, a day off, or a quick call to their supervisor to report what a good job they do.
Look for ways to make your caregiver’s life easier. Even small gestures can make a big difference to someone worn out.
 
Other stuff

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