Disease Management

There are many ways that I have learned to manage my disease over the years. Online resources have been hugely helpful. Back when I was on Facebook, belonging to a support group there led to some helpful suggestions.

This website has also been a fantastic place to gain insight and knowledge, even on topics like sex as a person with Mitochondrial disease. My Mito.org

Of course my mobility tools have been key. The unpredictability of this disorder can cause me a lot of anxiety. I don't know how long I'll be able to stand or walk on any given day. Keeping tools in the car makes that anxiety much less and sets me up for a successful outing or vacation. 

The biggest way I manage my disease is with medication, supplements and rest. Electrolytes too. I used to try to push myself through a day without rest, only to find I'm then over-tired at night and have a lot of trouble sleeping. If I take the time to rest I have a much better evening and better quality sleep at night. Strange, I know.

My medication is pretty dialed in now. It has been for over a year. My migraine management is the only thing that changes occasionally. 

Of course there are other things that "help." Like making meals simple. I typically just have a protein bar for breakfast. Even though my husband says that's not a breakfast, it's a snack. My favorite go-to dinner is a chopped salad kit (easier to eat than a normal salad) with faux buffalo chicken on top. 

Keeping positive and managing my mood is important as well. Talking with my husband and other family or close friends is therapeutic. I don't keep things bottled up anymore. Managing my stress is also helpful. 

Attending regular appointments to measure things like my breathing, heart and neurological symptoms is a must. I have from two to four appointments with my muscular neurologist a year. Four with my migraine neurologist (though I'm in the process of seeing a new person, so there's been a massive delay with my next appointment.) I see my primary care about three times a year for various things. Then usually some kind of specialist a few times in the year. A dermatologist or gastroenterologist. Urgent care is for things like I can't get my "bad ear" unplugged and it's starting to hurt, or a I have a UTI (happens about twice a year.)

Honestly just knowing what to expect and why something is happening to me has been incredibly helpful. Like the last time I went to the ER after my flu vaccination. Now I know if that happens again what it is, what to do and what to expect. I won't just be crying my eyes out scared to death.

Managing any disease is very complicated and time consuming. All consuming really. Now I need a rest. 

Re-Imagining Me

I've been trying to have a big mental shift. It isn't easy. At my age my thinking is pretty set. However if I shifted it to become a full time student at the age of 40, then I can do this. I accomplished a hell of a lot for my career. I have shown myself what I can do when I put my mind, time and energy to something.

In the past this was how my brain worked:

90% Illness

10% Everyone else, including me

My illness was in the drivers seat. I did anything I could to self-comfort. Social media, fast food, limiting how physical I was, ignoring it and just surviving. Not much of a focus on thriving.

But the power of the mind is mighty. Here's what I'm working towards:

75% ME

my food, being in nature, art, creativity, spirituality, relationships

25% Illness (appointments, crash days, pacing, pain, insomnia)

Rather than numbing myself out of my illness I'm leaning in and making friends with it. I'm not "managing" or "surviving." I am nurturing and feeding my body what she needs to do her best. By leaning in and listening. Rest, art, movement, beauty, nature, good nutrition... These are things I need. 

2025 Things That Help Me

Anything in the water is wonderful!

I've lived with chronic illness and disability now for a while. Through the years I've tried many tools to help me with my fatigue and muscle weakness. Many modifications as well. Here are some things I have learned that have been helpful to me.

1. Give in to sleep. I used to fight my afternoon fatigue like my life depended on it. I felt I was "weak" for giving in and resting. No more. Unless it's very important (I'm on a special vacation that I really don't want to miss a moment of), I rest every day. For as long as I need. Typically between 2-3 hours in the afternoon. I always feel better for it.

2. Use a stick. Even if I think I don't need it. I'm very prone to tripping and my stick has saved my ass more than once. 

3. Don't miss a dose. If I miss a dose of my medications I'm in hell. It's a very big deal with incredibly painful consequences. Now I let everyone I'm with know that and I set alarms. I never assume I'll just remember. Especially if my routine has changed and I'm out for the day.

4. I don't sweat "accomplishments." I used to feel huge pressure to "accomplish" as much as possible. To contribute something back to everyone and society. I let that shit go. Now I just do what I can.

5. Don't do standing what you can do sitting. Great advice. I try to remember this one as much as possible. Adding a stool to my bathroom was a game changer. I have low outlets there and a makeup mirror. Now I do all my bathroom grooming sitting down. A huge spoon saver.

6. Don't do it alone. I never go to any appointment alone if I can help it. I will always miss things that were said and the doctor's notes aren't always accurate either. But having my husband or my mom with me can not only help me remember what was said, but they can help advocate for me too if needed. Or help me remember things I was going to ask about (if I didn't write it down ahead of time.)

7. Keep good records. Keeping a list of all my doctors, their contact information and a list of my medication has been useful more than once. If I have questions going into an appointment I also try and send them ahead of time and bring it written down with me. I hang on to "after visit summary" sheets if it was an important appointment, if they gave me a referral or if it have medication changes on it that I need to remember.

8. Say "No." I'm still working on this one. I've gotten better about turning down things when I'm too tired, but I still can feel like a "flake" if it's too last minute. That also goes for modifying what I'm doing as I'm doing it. Leaving early, cutting outings short, etc...

9. Keeping things easy in the kitchen. Buying things pre-chopped (or getting my husband to do that part for me), having a food routine and having groceries delivered have all been helpful "tweaks" to how I used to do things in the kitchen. Also, using a stool when I cook is very helpful. Again... see #5.

10. Not putting pressure on myself. Period. This goes for sex, grooming, accomplishments, sleep, parenting... I tend to be an organized perfectionist, but that doesn't mesh well with the life of a chronic illness spoonie. My illness takes precedent and everything else comes second. It is the biggest part of me and demands to be accommodated. I try to keep that in mind of give myself grace.

All the ways I help myself

It took me a long time to learn how to listen to my body and to give myself what I need. I think it was graduate school that knocked that message into my thick skull. That I HAD to take care of myself before I could take care of anyone else.

Since becoming disabled that lesson has only grown. I had to become a strong advocate for myself and learn how to listen to what's going on with my body. It's the only way I could get help from my doctors. 

Here are a few things I'm into at the moment that make taking care of myself fun and easy.

My monster mug

My 40oz mug from Target. I drink about 3 of these a day. It's lighter than it looks and has saved me more than once when I thought I'd have a quick medical appointment. I only keep water in it and I hand wash. Totally worth it. It's lighter than many of my smaller travel cups. Water water water.

Fidgets

I struggle with dermatillomania. I've had it my whole life. My mom says I use more band aids than anyone she knows. This is more often than not the cause of that. I've been making a real effort lately to tame that beast. This comes in the form of fidgets. I have spinner rings and bought this new zipper bracelet as well. I love it. 

Still disabled!

I'm not a Wonder Woman ALL the time. Some days I'm in more pain than others or I've tweaked a muscle. Then I use my disabled parking plaque. This is an easy way to help myself. Save my spoons and make life a little easier to prioritize my energy.

Joint compression

Another thing I do is make sure I have the right equipment to combat muscle pain and fatigue when I need to. Like the right shoes, braces and medication. These Crocs are amazing. A gift from my mom. But when I'm really out walking my high-top boots are best to secure my newly weak right ankle. I pay attention to my body signals and do my best to help myself. I'm very fortunate to be able to have access to the right tools and tricks. 

 (I was not reimbursed for any of these products. It's my personal opinion only.)

Face It

My skin has been a hot mess lately. Huge pores, blackheads, pimples, you name it. I don't know if it's stress, a gift for "welcome to 50!" or hormones, but it has got to go. I have been feeling like I'm fighting a losing battle with my face.

I was looking online last night at some "good" store bought remedies. Not only did they cost a fortune, but they were full of chemicals. Even the "natural" ones. So after researching some of the ingredients that were helpful for acne I decided to make my own. "Hell! I own French lavender, aloe vera and rosemary bushes!" 

Here's the recipe I'm trying out. I invented it all on my own.

Compound (I put all this in a pot)

1 big bowl fresh French lavender heads (about 4 cups)

2 small springs rosemary

1 very large aloe leaf, split and de-goo'ed

2 tbsp coconut oil

2 tbsp olive oil

2 tbsp apricot seed oil

2 tbsp castor oil

2 cups distilled water

Steps

Bring mixture to a boil

Boil for 5 min

Lid and bring down to a simmer

Prepare small jars (1 cup), one for each treatment. Write on the lids what each one is, or label...

Soap

1 tbsp Pure Castille Soap

4 drops tea tree oil (natural disinfectant, good for acne)

Mixture

Lotion

1/2 tsp rubbing alcohol (as a preservative)

Mixture

Mask

4 tbsp European Clay

1/2 tsp rubbing alcohol (as a preservative)

Mixture

Simmer for a full hour

Strain (Press down to get all the oils and aloe from the pulp)

Add mixture to each jar evenly

Yields 3 cups

Bonus: Drink your water and listen to music while you wait.

Super Extra Bonus: While waiting put full fat whole organic yogurt on face. (share leftovers with your dog/cat.) Let stay till firm. Wash off and pat dry. Smear pure coconut oil on your hair and scalp. Cover with a kerchief or shower cap and let sit till you're done with your project. Wash off with shampoo and massage your scalp with warm water. Follow up with an apple cider vinegar/water rinse for the ultra treatment!

Why was my main ingredient lavender? Because it's a natural anti-inflammatory that's good for treating acne. It is also a natural calmer and can speed up the healing process.

Olive Oil: Has a similar lipid makeup to our natural skin. Helps with cellular regeneration.

Castor Oil: Anti-inflammatory, anti-microbal, immune system support. Great for acne.

Coconut Oil: Calms red skin, moisturizes and is easily absorbed by the skin.

Apricot Oil: Helps immune system like lavender. It's high in vitamin C and E so it works to fight acne and smooth my skin.

All oils help the skin retain moisture, my skin runs on the dry side so I need it.

European Clay: Is a favorite of mine. It naturally draws out impurities from the skin and gives the appearance of smaller pores. It works a lot like activated charcoal without the mess.

Aloe: Non-irritating and great for all skin. Healing properties. Moisturizing and anti-inflammation elements. 

In a Different Way

I was traveling to my mother's house the other day in my wheelchair when I had a lovely realization. I always think of myself as "no longer able to drive." But that's not quite true. I don't drive a car, but I drive my wheelchair regularly. Many of the same skills used driving a car are implemented in driving a wheelchair. So I do still drive! 

WATCH ME DRIVE!

This new thought soon spread to other "I can't" areas in my life.

Thought: "I no longer work."

Reality: I don't earn an income for my work right now, but I still do plenty of work. 

Thought: "I can't travel anymore."

Reality: I can travel. I travel shorter distances now.

Thought: "I'll never be able to have more dogs because I can't take care of them."

Reality: We can have more dogs (in the future) and I'll just take care of them in different ways and ask for help in ways that I can't.

It may seem insanely obvious, but this was a big revelation for me. Now I'm seeing every "can't" in my life as "I CAN! JUST IN A DIFFERENT WAY." That's huge for me and feels wonderful.

I AM

When I became disabled I had a very hard time not comparing myself to my "old" able self. It was constant. If I spent time in the garden watering I would tell myself "Well, you USED TO be able to be out here for hours". See what I mean? Comparisons.

Nothing good ever comes from looking behind. It has taken me a very long time but I feel a shift. I think I finally moved past comparing myself to what I used to be able to do. It has been a huge liberation!

I can't pinpoint what caused it. I've been aware of how damaging it is and unhelpful, but I just couldn't stop it. It literally had tentacled its way into every aspect of my life... just like my disability. But unlike my disability it is something I can control.

What helps is being mindful. Fully present in each moment as they come. Not having judgement on my life and what I can and can't do. Just enjoying it for what it is. Once I made that shift in thinking, I was FREE! Free to enjoy my life and each moment as they came. 

So now I AM a person who:

• Can ask for help
• Lets others help me
• Does my best and lets it rest
• Is MUCH happier
• Is seeing the beauty all around me
• Is more confident
• Is less judgmental of others
• Has a lighter heart

Desperate for help

I've been messaging with my doctors for the last month about my increasing pain. I've shared my struggles with neuropathy in my arms and legs, especially at night. I've voiced how I feel like I'm being pulled apart on a torture rack. I've stated that my pain makes it very hard for me to complete simple tasks and leaves me chronically exhausted. And then there's the afternoon crash. Missing out on three hours of my day regularly.

The Epicacten did help with this crash, but it left me feeling like a jet lagged tourist who downed a bunch of espresso to try and stay awake. Foggy headed and still exhausted, but unable to sleep. Not really much of an improvement. 

My primary doctor increased my night time Lyrica dose and that did help the neuropathy a bit. My muscular neurologist increased my Baclofen from three times a day to four to try and help the muscle cramps and spasms that were also increasing, but it did not help. That's how medicine goes! Sometimes things work great, but often they do not.

Then I did what I do best. I started researching some more on my own about Mitochondrial Myopathy and mito diseases. And there it was. The exhaustion, the pain, the neuropathy, everything I experience. What I also found was successful interventions using marijuana to combat the fatigue. 

In the past I've tried high CBD with little to no THC and it never did that much. It could help with night pain a bit, but never enough to warrant the cost. It's not like my insurance covers our (legal in my state) dispensary! Too bad. 

Due to my previous lung conditions and my asthma I've never tried any kind of inhalation, only edibles. But the more I read the more I learned about vaping and how it is better than edibles for pain and energy in many ways. It's instant, you can control the dose better, it's more cost affective and best of all the drug doesn't go through your liver and kidneys, but straight into your blood stream from your lungs.

I researched the best strains for energy and pain. Then armed with this knowledge we went to the dispensary. The employee was very helpful and set me up with a vape pen, cartridge and night time pain gummies to try. She also helpfully explained that if you're trying to help pain you need THC. "Without a little high you can't get rid of pain effectively". 

I'm going slow with it and learning what works best for me, but on the very first day of using it I didn't need a nap. Last night I didn't have the gummy and for the first time since I started taking it I had painsomnia. I'm now going on day FIVE with no mid-afternoon crash. It feels amazing. My pain is also much more manageable. It isn't helping my mobility or muscle issues, but the pain and fatigue are very much improved, so I'll take it!

A doctor of mine did get back to me with another medical suggestion. The medication would involve a hospital stay and the side effects were very risky. For now I'm good with trying what I have. If it becomes a permanent part of my coping tools, then I'll inform my doctors about it. But for now I'm still in the trial phase.

This is by far the best recommendation list for dealing with exhaustion. Shared from the Mito Action Group. 

General Guidelines for Dealing With Fatigue:

Rearrange Your Environment

• Keep frequently used items in a location where you will use them. This avoids having to carry them around or do extra walking to get them.
• Replace existing heavy items with lighter one (plastic vs. glass).
• Use good body mechanics – don’t carry equipment if you can push it. Slide, don’t lift, push, don’t pull. Maintain good posture. Bend at the knees, not the waist. Eliminate unnecessary motions. Use both hands when possible while carrying. Adjust work-spaces such as raising a tabletop to eliminate awkward positions.
• Install long handles on faucets or doorknobs.
• Consider moving your bed to the first floor to eliminate stair climbing.
• Organize the kitchen for maximum efficiency. Place the most often used items on the lowest shelves. Make a cooking area having all pots and pans together close to the stove. Spices and utensils should also be as close to the cooking area as possible. Consult an occupational therapist to help personalize the ideas listed here and enlist a helper or two to rearrange your living environment.

Eliminate any Unnecessary Effort

• Sit rather than stand whenever possible, i.e.: when preparing food, washing dishes, when talking on the phone.
• When dressing, sit, have your clothes at arm’s length, dressing the lower parts of your body first as this requires the most energy expenditure. Bring your feet up to you rather than bending down to them. Work slowly and methodically, resting when needed. Buy clothes that are easy to care for and put on.
• Shower using a shower chair, remain sitting when shaving your legs instead of bending over, have a chair in the bathroom so you can sit while drying yourself.
• Use adaptive equipment that is appropriate to your situation, i.e.: book holder, a jar opener, a reacher, text to speech software or hand-free headset for your phone.
• Organize the method in which you work, repetition of the same methods will increase proficiency and save time and energy.
• Soak your dishes before washing, let them air dry or consider using paper products.
• Buy prepared foods and try to keep prepared healthy snacks available such as precooked hard-boiled eggs, cheese slices and fruit.
• Shopping can be an exhausting activity so try to find a grocery store that accepts phone orders and delivers. A few large grocery chains have online ordering and delivering. If you go shopping, use electric carts or wheelchairs, which most large grocery stores make available. Other items are available from catalogs by mail, phone or the Internet. Take advantage of these effective alternative ways of shopping. Think of how many stores you can visit without leaving your chair!

Plan Ahead

• Pre-plan your activities and try to make a daily or weekly schedule.
• Ask yourself a few questions: Is there too much to do on a single day? Are heavy tasks alternated with light ones? Are heavy tasks distributed throughout the week? Have I scheduled enough time to for activities with enough time between each one to rest? Rushing takes more energy!
• Make fewer trips around the house; if you have stairs, organize your day so you minimize the need to climb them.
• Cook in larger quantities and refrigerate or freeze extra portions.
• Work rest breaks into activities as often as possible. Take a break before you get tired.
• Try to plan some type of exercise into your weekly routine. Toned muscles require less energy to function.

Prioritize

• Eliminate or reduce tasks that aren’t that important you.
• Remember to delegate tasks to family or friends who offer to help.
• Consider hiring professionals, such as a cleaning service or lawn service, to cut down on your workload.
• Decide  what are the most important things in your life and spend your energy money on them.
• Always listen to your body, know your limits and don’t let yourself become overtired.

If you do overdo it, try not to be too hard on yourself. Walking the mito path is very challenging and learning how much activity is too much is sometimes determined by when we crash! The goal is to live a rich and full life with the least amount of mito crashes as possible.

What's Working (and what isn't)

I've been challenged with chronic illness for a while now. If you go all the way back to when I contracted Latent Tuberculosis then it has been four years (2015-2019). My mother recently asked me if the time before I struggled with health was 100% for me, what percent would I be at right now. I told her 10%. For me my 100% wasn't very long ago, in fact I can remember it like yesterday if I let myself, but file that one under "things that don't help me". Should we start there? Yes, let's...

A favorite smell to spray on my bed - that works!

What Doesn't Work:

1. Dwelling on the past. Even visiting it briefly really. Ditch that mental train to the past and stay in the present or very near future.
2. Pushing myself too hard physically. I went through an understandable phase of trying to push myself as hard as I could every day. That just led to exhaustion and me feeling much worse quickly. Plus it gives others the false impression that I'm able to do more than I really can. "Invisible illness". They can't see what it costs you to over-push. This also goes for not resting enough, not using my mobility tools and trying to have sex at the wrong time of day. Pushing gently but checking in with myself frequently is what works best for me. 
3. Comparing myself. It could be comparing myself to others, or to "normal" people, or even to what I used to be able to do. I am myself here and now and that is all I need. 
4. Fixating on symptoms. Research is good and I am the expert in my own body, but it's a fine line between research and fixation. A VERY fine line that I know I've crossed in the past. My condition is rare and to me that means I have to be diligent on research. But that research can lead to me over-reacting if I don't watch it. 
5. Living too much in the moment. Planning is very helpful for me. Making a meal menu, preparing food ahead of time (my husband does a lot of that), reviewing my week, figuring out how I'm getting to appointments and who is taking me. If I'm too much "in the moment" I won't do any of that. For right now I'm still able to and I find it useful.
6. Disconnecting from my body. It's easy for me to just go on auto and completely un plug my body from my brain. Scary easy. But then I end up doing something stupid, over-doing it or just not realizing how I'm feeling. Not good. Doing things like shaving (if I feel like it) henna coloring my hair, getting a haircut, giving myself a manicure (still can!) All of these things help me re-connect to my body which is incredibly important. 
7. Eating crap. I crave junk food and really love it, but I know it's horrible for me and makes me feel terrible. Eating anything processed is terrible for me. I honestly try to eat whole, real food as much as I can. Homemade yogurt smoothies with honey, frozen berries and flax, homemade beans, fresh fruits and vegetables, gluten free foods, etc. But it's a struggle because I'm a whore for Taco Bell. 
8. Drinking alcohol. Any kind of alcohol really will just flare my pain. Plus I already feel about 3 drinks drunk all of the time anyway. So I don't need it, but I do miss it socially. Like eating crap I know if I drink alcohol I just made myself intentionally feel worse. 
9. Giving up on the medical industry. Treating my chronic illness requires a fine balance between my medical team and complimentary interventions like vitamins, eating well and resting. I've had many times where I just scream "f*&@ this shit!" And never come back to any doctor again (like after that spinal tap by Dougie Houser.) But I also know that although understandable, it's not in my best interest. So I go again and again and again.
10. Keeping my struggles to myself. There was a time when I didn't have this blog, or tell my husband ALL of my symptoms, or let anyone know how much I was suffering. At one point my neuropathy was so bad that I was up for hours each night crying because of the pain. But still I went to school the next day (and got all A's by the way.) But keeping people out and suffering alone doesn't work for me. It leads to loneliness, depression and is a strain on my relationships. 

Noticing nature - that works!

What's Working (*Today):

1. Being around family as much as I can. Instead of pushing people away I now try to let them in with heart wide open.
2. Keeping everyone I love informed about my health. If I learn something new about my condition I try and share it. And not just with my husband, but with my son and other family too.
3. Asking for help. I used to be horrible about this, but TB made me change my ways. I now never hesitate to ask for help (although I do like to try and do things myself first.) 
4. Saying "no" even to the people I love most. I'm the only one who knows how much energy I have and what I can and can't do. So it's up to me to let people know when I simply can't do something. Especially when I need to rest. 
5. Making my health a priority. Not work, not my son, but my health. If I want to be there for others then I have to take care of myself first. This is also something that took me a long time to start doing because I get a lot out of helping other people. Heck! It's what I went to school for 10 years to do!
6. Keeping hope and an open mind. It's very easy to lose hope in my situation. Struggling with something rare, that's a moving target is a real challenge to treat. But there are hopeful clinicians out there and I'm lucky enough to have found a few. I also have a very hopeful family and that's awesome.
7. Caring for myself in every way I can. So yes I try to care for my body. Wear the right shoes for stability and support, take my medications when I need to. But I also try and take care of my mind. Connect with people I love, write a blog, read a book, fart off on Pinterest... These are all ways I take care of myself. Oooo! And I'm becoming an avid collector of soft lounge clothes. And did I mention my adorable new pink purse?
8. Savoring the moment. Not getting too far ahead or behind the time. Noticing the hummingbirds outside my window, a perfect dandelion as I roll with my dog, her sweet breath as she sleeps. All these precious moments would be easy to ignore, but by noticing them I'm keeping myself mentally well and grounded in the present. 
9. Stressing patience. I used to be a very impatient person. But when I have a three month wait till I see my neurologist again, I had to learn how to be patient. If not I'd go insane. So I learned how to breathe, relax away that tension and release those expectations. 
10. Expanding my identity. My job was a huge part of my identity. Losing that was a big blow. As I told my family the other day "I lost my job and the ability to drive in the same week". Considering I've been driving for 30 years, that was a big loss too! So the best way to help myself with that loss is to explore new identities. I used to do art so much that I considered it a big piece of my identity. I lost that when I took on "student". Same with "writer". These are two that I can re-claim. When I was working full time I couldn't garden as much. Now I can do a little and it's something I enjoy. I'm enjoying the process and it makes the loss of my other identities sting a little less. 

A nap with my girl - always works!

PKA 3 Weeks In

I just finished week 3 of "Plan Kick Ass" (PKA for short) and here's what's going on with my body. 

I was able to make the connection that I will have at least one period in the day where I just hit a wall. It's literally like being unplugged. If I don't stop what I'm doing and immediately go to bed then my body rebels.

What I mean by "rebels" is my vision goes unfocussed, I see stars, see double, I feel exhausted, my body hurts and I feel physically weaker. It becomes hard to literally keep my eyes open. I have been trying out energy drinks with caffeine and vitamins to help me over this major issue and it has been helping a little. But then I accidentally found something this week that could help even more. SUGAR.

I ate some (...ok... more than "some") red licorice one day at work and I noticed that I felt a lot better in the afternoon. The following day I had 2 teaspoons of honey instead of the sugar and I noticed that it still felt better than the energy drinks that I was trying. Now I'm suspecting I might have some kind of glucose metabolizing issue or mutation? I'm going to try and do some research on it.

As anyone with a chronic illness knows, we are our own best doctors!

Speaking of, here's where things stand medically as of today.

• My primary care doctor 100% supports PKA (I knew he would.)
• My insurance denied my genetic testing for other mutations, but my husband is going to work on an appeal letter this weekend.
• I'm not seeing my neurologist anymore because we hit a treatment wall after the COQ10.
• The Baclofen has been a life saver with the muscle cramps, twitches and spasms.
• I'm still pushing myself physically. I even started wearing my Fitbit again!
• My husband and I are still trying to eat whole, high protein foods.
• I'm working on reducing my portion sizes to help with weight loss.
• I'm napping and resting every day I don't work.
• I'm down to 3 days a week (30hrs) of work instead of 4.
• I've been approved to work from home 1 of those 3 days. YIPPEEEEE!

I also took the stairs today at my doctor's appointment, the first time in two years. I went super slow, but I did it! Going down was MUCH easier.

Next up... current symptoms for September 2019.

(My last symptom share was June 2019)

Prepping for the week

Meal shopping and prepping is something my husband and I (mostly) do together. Our town has a magnificent farmer's market that we try to go to on Saturday mornings. We stock up on eggs, fresh fruits and veg and occasionally cheese and meat there. 

I try to be careful where my dairy and meat is sourced from and there's a fantastic Scottish family farmer that we love. His eggs are beyond compare, each one tasting like golden love. (I received no kick back for this endorsement, but wouldn't say no to some free eggs.)

My husband has taken to doing almost all the meal prep for the week. He'll fill up all our water jugs then sauté up a giant batch of peppers and onions. We use them on almost anything, but have especially been enjoying veggie fajitas. 



I try and boil eggs for the week (for a work snack) and prepare my lunches ahead of time. This week is a delicious veggie, gluten free pasta salad with fresh herbs and veg from our trip to the farmers market. Delicious! (please read this in the voice of Gordon Ramsay.)

Hummus, bananas and yogurt are also a must have for the week. 

Aside from all this delicious grab-and-go food I like to make sure I'm also mentally prepared for the week. My job is very intense, emotionally charged and can be draining, so every little thing I can do to relax and re-set is very helpful. This means having clean clothes, taking a big nap, not taking on any big activities and feeling physically ready. 

Sometimes that looks like giving myself a facial or taking a bath (if my muscles are doing well enough to get in and out of the tub like that.) This week I got my nails done in a fun "out there" style that I've never done before.

Dragon Eye Nails

My husband and I also come up with a meal plan so we know what to make when we're tired and groggy after a long day. We try and cook together, but some nights all I can manage is keeping him company while he cooks. Just like with grocery shopping. We occasionally go together, but other days (like today) he runs off with a list we made to do the leg work.

I'm adjusting slowly to doing what I can when I can and saving energy for the really important things. It still isn't easy. But having bitchen nails does help.

What Saves Me Spoons (and makes life easier!)

I've posted in the past about the things that make my day-to-day life a bit easier. But I'm always finding and trying new things, so I wanted to share my latest spoon savers.

#1) My Panasonic Wet/Dry electric shaver.

I used to use a typical razor in the shower and shave my 6'0 legs. The thought of that now just cracks me up! No way could I stand balanced in the shower and hand shave any part of me. Enter my wonderful, precious shaver. I use it dry about once or twice a week (despite my Italian heritage insisting I use it 5x a day at a minimum.) I use it while seated and as comfortable as I can be. You could however also use it with a shower chair wet in the shower. I just find for me that it works better when I'm dry (and let's face it, just showering is spoon sucking enough as it is!)

#2) Having super short "boy" hair that's my natural color.
I've had very short hair for a while now, but I keep getting it cut even shorter. The reason for that is 2 fold. 1 - My arms tire very quickly when raised up over my head (shampooing, conditioning, blow drying, styling) and having ultra short hair cuts that time WAY down. 2 - I'm growing out my color. Why? Although I love the look of dark hair (Yas Wonder Woman!) I hate the chemicals and maintenance. And again in comes the arm strength issue. I'm embracing my silver strands, but I hate the "two tone" look, so I keep getting it cut as short as I can bare. Which is pretty freaking short!

Me literally right now as I write this blog.

Yup... it's THAT short.

#3) Single serving and pre-made foods.

Yes, you pay more. And yeah... it's worth it! At least for me. I save a lot of spoons in the morning if instead of getting the gluten free bread out of the fridge, putting it in the toaster, finding a ripe avocado, cutting it up, spreading it on my toast, adding pepper flake and sea salt (because I'm fancy like that) I just open up (or even better have my husband open it for me) a small cup of my favorite yogurt. Add a banana and BINGO! Low spoon breakfast. Seriously anything I can do to save energy is worth it in the mornings. 

My favorite brand and flavor. 

If you haven't tried Icelandic yogurt, I highly recommend it!

#4) A HUGE capacity washer and dryer.

Less time back and forth = less energy used. I just bought a massive 5 cubic feet GE washer. I think my old one was 3.5? This one fits a whole basket in 1 load and was worth every penny. I wish someone would have told me that a big washer would save me energy and time. I would have traded my old one in sooner.

Mine is a GE 5-cu ft High Efficiency Washer.

You don't even have to clean the lint trap!

#5) Mobility Aides.

Although these are further down on the list they're the most important tools I have. All of them help me save major spoons, help with pain and allow me to do things I couldn't otherwise do. Hopefully soon I can add "electric wheelchair" to this list. But for now it's enough to get through my daily tasks.

Electric shopping carts

Transport wheelchair

Nordic Pole walking sticks

My #1 used tool the Rollator (with a seat)

#6) Adapting my house.

Making adaptations around my house has been fantastic. I have a small grab bar in the shower, sitting stool in the kitchen, a step stool with a handle (also in the kitchen), shampoo and soap dispensers in the bathroom and a tray for eating when we're sitting on the couch. I'm sure this list will get longer over time, but for now each of these changes has been hugely helpful. 

My cooking stool (with my old step stool)

My bathroom helpers