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Millennial post-stroke

Millennial post-stroke

A few weeks ago I joined some groups that included “young stroke survivors” and although I absolutely love them, I wanted to talk about some of the challenges stroke survivors that people between the early 80s to the early 00s could relate to, so we’re not kids, but we also probably haven’t had some major life experiences as our more mature young stroke survivors (giving birth etc) AND we love technology LOL oh and we are super energetic (well, we try to be lol) Ok this is being super stereotypical but seriously wanted to talk about others like me even though all of us certainly have different experiences and different bodies with different types of stroke. This is written for 25 to 30 something-year-olds but if you’re a bit older and can relate I would love it if these tips helped you too 🙂  Here’s some things I’ve learned from my own experience.

Sleep

If you’re like me you find sleep hard to get at night even though you get fatigued easily during the day and feel tired…weird huh? I love this Calm app that I found Android and it super helps. I listen to “meditative sleep stories” and usually never remember the ending the next day because I actually fall asleep before it finishes the night before.

Exercise

Again, something I use on my android phone (you can even go a step further and get a fit bit something like that lol) I use google fit, it automatically counts my steps throughout the day and I add my exercises. I currently do 4km in 12 minutes on the cross trainer (starting the intensity at level 1 for the first 3 minutes, then level 2 at 3 to 6 minutes, level 3 at 6-9minutes and finally, at level 4 9 to 12minutes); 10 minutes on the treadmill (about 800m) and 5-6 minutes on the rowing machine (or equivalent to at least 500m). I set the goal of at least 30 minutes of exercise every day if I can. Then I add a few minutes every day doing some balance exercises on a balance mat. I guess the theme for me surround complacency – do not get complacent!

Diet

Before the stroke I had relatively healthy habits, even bordering on vegan, but since the stroke and being put on warfarin I cannot any green, leafy vegetable or anything high in vitamin K. As usual diet restrictions note, everything in moderation but definitely NO soft drinks, alcohol or overly processed foods (bye maccas/McDonalds lol).

Mental workout

Every day I do a day of challenges set by the android app Elevate and read a lot, here are some great, inspiring books (I haven’t read all of them…yet).

Pregnancy

Like many young women at our age, also known as birthing age, pregnancy is a big question on my mind and while I don’t have all the answers and probably no one does know everything, joining a group really helps to alleviate fears and ask questions. Try joining groups like I did for example: Folks with strokes (Mothers).

Work

Getting back to work is certainly a challenge, not just mentally but physically too. Having a supportive team, boss and partner definitely helps the transition. I have been back now for about month. I have noticed that although I am much slower, I can do it. The physios and psychologists recommended me to go back but with limited expectations. Where I could write 4 blogs a morning for other companies, I can now only write one in the morning as I find it hard to focus after and I get fatigued/tired easier. So I only work half days at the moment. They also suggested that every hour I take a few minutes to rest and do something else, like walk around, do some squats, stretches and re-focus my eyes (being a copywriter my eyes are always on a screen). I don’t drive in Australia (I do have an international license but they drive on the other side of the road here – scaryyy) so I don’t have many tips around this but I have been told after a stroke you are not to drive for several weeks after.

Getting Around

Just like with my autoimmune condition, I always think of the “Spoon theory” you have limited spoons now, no more unlimited spoons like before so pick and choose your battles or outings lol. Heading out tonight? It might mean skipping that afternoon run. If you’re planning to go to a party tomorrow night, make sure you rest up before then to conserve energy. Another little tip is using your phone reminders – I always seem to forget to take medicine on time, so make sure you have a regular alarm to remind you. When getting around, remember safety first and go slowly! If you are on warfarin too, avoid accidents like cutting yourself or falling down. The first few weeks getting out of rehab, my hubby helped me to walk everywhere (ultimate spotter lol) but when I am by myself, I am extra careful and cautious of where I am. No rushing! that train or bus can wait or you can catch the next one, do not risk falling over! Not only do you now bleed easier but you also have uncoordinated movements that unexpected falls could make you severely dizzy or worse, cause another stroke! Heaven forbid!

Music

I absolutely love music and it certainly helps in the path towards recovery. Check out my Spotify playlist and you can add your own tunes too 🙂  https://open.spotify.com/user/22eobkhq7cn5rtnonokancegi/playlist/0ot0xQNA24287NwXOMim3y

Challenges

Each month I set a goal to work towards. Next month I am joining a 5km fun “run” (or walk in my case) and I am excited to get going!

Diary

Instead of comparing to what you looked/acted like before the stroke, compare yourself just after the stroke. I could hardly walk or talk, so when I look at it this way, I’ve come a long way! Sure, if I compare to before there is a big difference, I am a lot slower and unsteady now but I am slowly improving every day even if it is the subtlest of changes. Also keeping a diary is super therapeutic, you need to face your feelings not hide from them. Observe them! If you’re angry, why? Go through the motions and express them in your diary, this can be a good log for looking back and also you can see if your handwriting improved too (mine was terrible just after the stroke). Remember “the more you do, the more you are” So don’t let yourself forget how to write, you need to write! It might look super messy in the beginning but after constant practice, it gets better. Even if you didn’t have a stroke, if you didn’t write for a long time, you would find it hard to write neatly again.

Finding your voice

Just after my stroke I lost my voice, literally, at first it was really hard to make sounds, then the words were mixed up, and then I just ended up really husky and breathy like I just had a cough or something. Before the stroke, I loved to sing so you can imagine losing my voice was definitely a challenge! With a series of vocal exercises (such as a bottle filled with a little water and straw) I have slowly built my voice back and this coming Monday I will see an ENT to do a vocal clinic test to see how the stroke impacted on my vocal chords. I have done previously, but it was not to the extent of my ability to sing. Currently, I can sing to a tune, which is a huge deal! But I can’t hit higher notes or access my mid-range which I see as a part of my voice is paralysed, or frozen, it feels tighter than usual. I have come across a couple of sites in the meantime: Dysarthria and Singing.

Why not me?

In a video I posted on my page, I told the story of one night at like 3am I looked in the mirror and I was angry. I kept asking “why me?” but the question I then changed it to was “why not me?” It is a powerful thing to look in the mirror and ask why not, instead of placing blame on someone else or something else, it’s on me, which leads me to the “real” why question, the “why” that I could control. “Why did you survive?” and it’s up to us to answer that, we are survivors for a reason, hold onto that and keep going!

Emotional Rollercoaster

It may seem that I am not that bad, well let me just start by saying thank you, I work hard at appearing “normal”. Sure I have my days, ups and downs, challenges just like any other stroke survivor, what keeps me going is the love of my family – especially my hubby. I know it can be super hard dealing with emotions but make sure to show appreciation to your loved ones! If you ever need a friend to vent to or share your accomplishments, I totally have your back too! 🙂

I hope you find these tips helpful, what about you? Any tips to share for your stroke recovery?

 

 

 

 


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Stroke Recovery Playlist

– “What are you afraid of?” by Kerrie Roberts
– “Fight song” by Rachel Platten
– “Fighter” by Christina Aguilera
– “Alive” by Sia
– “Never give up” by Sia
– “I am” by Mickey Shiloh
– “Stronger” by Kelly Clarkson
– “There’s nothing holding me back” by Shawn Mendes
– “Lose Yourself” by Eminem
– “Confident” by Demi Lovato
– “Monsters” by Katie Sky
– “Who you are” by Jessie J
– “Champion” by Chris Brown
– “Invincible” by Kelly Clarkson
– “Try” by Mandy Harvey
– “The Greatest” by Sia
– “Reaper” by Sia
– “Survivor” by Destiny’s Child
– “Roar” by Katy Perry
– “The Climb” by Miley Cyrus
– “I believe I can fly” by R. Kelly
– “Hero” by Mariah Carey
– “Give it a go” by Timbaland
– ” Am I wrong” by Nico & Vinz
– “I’m still standing” by Elton John
– “Good day”by DNCE
– “Rise Up” by Andra Day
– “Not alone” by McFly
– “Footprints in the sand” by Leona Lewis
What inspiring songs can you add? 🙂


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How to keep warm and pain-free this winter

How to keep warm and pain-free this winter

“Winter is coming!” if you’re a GoT fan, this may mean a little more to you, but even if you’re not, I’m quite serious – winter is coming and if you’re like me, your joints are already letting you know it’s starting to get colder. In this post, I want to share some tips on how to keep warm and pain-free this winter.

Warm Bath

Ok, so it doesn’t get too cold, snow is probably the last thing that could happen when it’s winter here in Brisbane, but it does get cold, especially for an autoimmunee. One of the best things ever invented to help warm up cold muscles, aching joints and overall exhausted bodies is a warm bath! If you don’t have a bathtub, don’t despair, you can still warm up with a hot foot spa (fill your foot spa and basic basin and stick your feet in!). This can help you raise your core temperature and signal to your body to relax.

    • Make a Muscle Relaxing Detox Bath. Add some Epsom salts (about a small handful); some pure essential oils like peppermint or lavender (25-35 drops); 2 teabags of Tension Tamer (open up and sprinkle contents in the bath; you can rinse after); and a small capful of Olive Oil (this makes the tub slippery so be cautious, the oil acts as a skin cleanser and moisturizer). Then mix it all together until you’re ready to get in. Try to let your body soak for 15-30 minutes.
    • Apple Cider Vinegar Bath. Bathing in apple cider vinegar can help reduce the symptoms of pain and arthritis. It also aids the mobility of the joints greatly as it reduces the excess uric acid build up in the body. Just add 1 to 2 cups of apple cider vinegar to a warm or hot bath and soak for up to 30 minutes. Make sure to drink lots of water before and after your bath.
    • Click here for more recipes:

 

 

Avoid alcohol and drink more water instead

Alcohol causes blood to rush towards your skin, lowering your core temperature. It also keeps your body from shivering, which is a key part of how you stay warm. Drink as much water as possible because if you’re dehydrated, your body will send the fluids you do have to essential organs like your heart and brain, instead of your fingers and toes. For people with poor circulation from conditions like diabetes and Raynaud’s Disease, that lack of blood flow can worsen hand and foot pain.

Keep Moving

Arthritis can affect people at anytime throughout the year, but the winter and wet weather months can make it even harder to manage symptoms. The cold and damp weather affects those living with arthritis as climate can create increased pain to joints whilst changes also occur to exercise routines. We have an instinct during winter to hibernate; however, a lack of physical activity will cause joints to become stiff.  Exercise eases arthritis pain. It increases strength and flexibility, reduces joint pain, and helps combat fatigue. To manage arthritic conditions during the cooler months, individuals need to plan physical activities that are easy to do during winter, such as:

  • Walking indoors, such as around shopping centres
  • Household chores, like vacuuming
  • Playing with children
  • Swimming indoors, such as Hydrotherapy
  • Taking an aerobics or yoga class
  • Listening to music and dancing
  • Using the stairs instead of the elevator
  • Stretching or doing light exercises while watching TV

How cool would it be to have an indoor endless pool?

Have you got some more tips to keep warm and pain-free this winter? Share them below.


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Log Book

What keeps me motivated? There are certainly several things that you could say motivate you, but having ACCOUNTABILITY keeps me motivated to keep going. So I started doing a log, like so:

Date:
Breakfast:
Lunch:
Dinner:
Snacks throughout the day:

Then I go on to mark red, times I slipped up, just to be more mindful and conscious of my choices and how they made me feel. For example, I had red meat the other evening, and while it tasted great, I woke up with so much pain and heat in my legs. Not everyone reacts the same as I do, but I know that red meat is a trigger for inflammation in my body.

Next up, I address theme days:

#MotivationalMonday
Quotes to set the tone for the week:
Music playlist (new songs) for this week:
Goals and Schedule for the week:

#TransformationTuesday
(insert inspirational pics)
This week’s life lesson tackle:

#WorkoutWednesday
(insert workout selfie; workouts to try – look at pinterest)
Career/Business goals and checklist:

#ThrowbackThursday
(insert pics from the past)
3 things you are grateful for:
1.
2.
3.
Something meaningful that happened to you in the past 24 hours

#FoodforThoughtFriday
(insert cheat meal pic)
Reflectiions on food choices this week:
Favourite health recipe:
Favourite healthy snack:

#SaturdaySolutions
For most people it’s the end of the work week, so Saturday is the perfect day to get done things you couldn’t during it. Laundry day. Clean up the house. It’s also project day. Been dying to try some of those DIY projects on pinterest? Do the project on this day (insert instructions and pic of final product here)

#SoulmateSunday
Outing: Where did you go?

Starting Monday 29, August, I’ll share with you some on my log entries 🙂

 


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Theme Days

A way to practice the goodness inside of us and remember why we do what we do, is theme days. Not sure what I’m talking about? Have a read below for some ideas:

#MotivationalMonday – Quotes to set the tone for the week; meditate for 5-10mins; music playlist for the week to get you pumping; set out business goals and schedule for the week

#TransformationTuesday – Images to inspire you to do and be better both yourself and others; if you were asked what’s a lesson you need to learn in this lifetime, what would it be? Could you do something today towards learning this lesson. This will take a bit of introspection, but look at yourself from the outside, what’s something you know as a weakness and how can you make it your power?

#WorkoutWednesday – Post work out selfies; whacky work out gear; workouts to try and findings; what can you do right now for your career? It’s not just about a new exercise activity, but literal work activity – in my case, what can I do to further my writing career? What are things I need to do in my business to get to that next step forward, and if I don’t know what that is, what are my business/career goals?

#ThrowbackThursday – Reminisce on the past things to learn from and also bring back e.g music videos, pics etc.; list down 3 things you are grateful for; something meaningful that happened to you in the past 24 hours

#FoodforThoughtFriday – reflecting on food choices as eat out on Fridays; share favourite healthy recipe; take a pic of cheat meal; try and share a new smoothie recipe; favourite snacks

#SaturdaySolutions – get things done that was missed during the week – clean up; project day – small fixes and DIY at home (e.g balcony garden); pinterest must try projects

#SoulmateSunday – share a workout you do together with your partner; sundates – going out with the your soulmate; future plans – daydream together; feliz day – if you’re single, don’t worry Soulmate Aunday is for you too. It’s a day to love yourself too, because if you can’t love yourself how can you love someone else? Do something for yourself, go out and get a manicure or a massage, go for a nice walk, practice being YOU, I know sounds weird but think, what makes you unique? Your sense of humour? Your sense of style? Whatever it may be, don’t keep all that goodness to yourself, get out there! Join a new meetup group, step outside your comfort zone to meet new people – you may discover something about yourself too.

 


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Tapering Prednisone Part 1

Tapering Prednisone Part 1

Update 21/12/2015: My CPAN is again active, so tapering prednisone isn’t an option at the moment. Remember when thinking of these things you have to talk to your doctor to help make a plan together. If you are in ‘remission’ like I was at the time, meaning the condition was all ok in the blood tests, and in control with the medicines, it’s a slow process and it will take time, but it is achievable to taper to a lower dosage.

There’s a heap of stuff on Prednisone on line and people’s experiences, so instead of regurgitating all that info here, I wanted to get straight to the point. This post is for those who already know what prednisone is, what it does (both a miracle drug and a curse), and have been on it long term (as in more than 5 years daily! Not just a few months).

I have talked about weight fluctuations, side effects (such as moon face, buffalo hump), bruising, and a plethora of other prednisone-related stuff throughout other blogs so I’ll skip this for now.

Let’s get straight to it and research I’ve found helpful. Note that it’s still an ongoing battle for me, but I have a lot more faith that I will be able to live pred-free in the future, it’s just going to take conscious lifestyle & behaviour changes and a lot of patience.

One thing I have to mention before I begin that I cannot stress enough is that getting off or weaning prednisone isn’t a matter of will power nor personal achievement – you can have this in spades – you need to understand that being on a drug as powerful as this changes your body. As Grace Tabitha Lim of Health Matters Blog (2012) explains: It is a function of weaning a glandular system from a manmade substance that causes it to cease production of it’s own product and putting that complete glandular system back “on line.” In other words, your body has either stopped or greatly reduced creating cortisol naturally and has now become dependent on prednisone to provide it. Do not, under any circumstances, go off prednisone suddenly on your own without medical supervision. Going down too fast or when your body isn’t ready can be life threatening, and in my own personal experience it can lead to seizures and other not very pleasant side effects. Stopping Prednisone abruptly/cold turkey could have dire consequences in the form of strong ‘rebound inflammation’, pain, and a worsening of the disease for which you are taking this drug.

Note these tips are given in the mindset of weaning prednisone to a minimum dosage, it’s also given as in my case that you are in remission or your condition is under control. I was on azathiorprine but have been able already to stop taking it. I alternate daily now with Sibelium 5mg to help with migraines. But so far all my blood tests are ok, now it is a matter of going down off Pred slowly so as not to get any backlashes from getting off it too fast. These ideas are just from my own experience, I am sure others have different ideas and experiences and would love to hear more about them.

Here are some suggestions I want to share with those who are planning to wean:

  1. Talk to you doctor! After reading the following ideas, tell your doctor what you plan to do, this doesn’t have to be done alone, let someone be aware of what’s going on so they can also track you and you can do it in a safe way. You can come up with a schedule together (e.g each week or month going down at 1mg or 2.5mg at a time…whatever your doctor and you agree to start off with and then you can adjust too as you go on).
  2. Lifestyle Habits. I don’t want to use the word diet, I’d rather think of it as conscious eating. Keep a diary of what you eat and do each day and then make note of how each food, drink or activity made you feel after and the day after – did they affect you? If you did less of something or more does this make a difference? Personally, I find drinking alcohol as a huge cause of inflammation so I’ve stopped drinking any sort of alcoholic beverage. I also found white bread, caffeine, too much sugar, red meat and tomatoes also aggravate symptoms. I am still on the journey of discovering what habits help or hurt, and continuously learn & research about anti inflammatory foods etc. If you can minimize symptoms and the condition for which you originally take prednisone for, then your body will also have an easier time getting off it, it’s no good trying to get off it if you still have many of your condition’s problems. Remember, there’s a reason you started taking prednisone in the first place, it is amazing in helping those with autoimmune conditions par none, so be aware when coming down from it you need to do it slowly.
  3. Exercise. As much as it sounds scary for those with autoimmune conditions where symptoms are very much pain-centric, exercise is so important. Low impact such as walking and swimming are great, and call help battle side effects of prednisone such as weight gain, buffalo hump and moon face. However, do take note you can still do this and those side effects will still occur but not to the degree as they would had you not be exercising. A large part of autoimmune conditions is also being fatigued and tired easily, exercise may sound like the opposite but in doing it, and you’ll generate more energy. Just remember to pace yourself, it’s no good going all out hard-core workouts and then having to pay for it later with flare ups of your condition, and more pain than it was worth. As they say everything in moderation.
  4. Drink water. You’ve probably heard this a million times, and not just for autoimmunees but for overall health in general – water is the real miracle. Drinking water helps to flush your system out, and is so important to drink at least 2-3L if you’re on prednisone. I won’t go on about what would happen without drinking enough water, you’ve heard it all before, most people today are actually dehydrated leading to a number of problems not just autoimmune related.
  5. Supplements. As mentioned before, I won’t go deep into the whys and whats (you can read about this further somewhere else) but from my collective research here are the main supplements that can help overall autoimmune health and important to take as you taper down: B Complex (energy and brain health), Vitamin C (immunity), Calcium+Magnesium(bone health) and Flax Seed Oil (for arthritis – note some people have adverse reactions to fish oils, I’ve found flax a good substitute, again best to discuss with your doctor).
  6. Supportive Medicines. In my personal experience, weaning down can be painful, even just a difference of 1mg can cause all sorts of changes. So, as I go down (super slow like 1mg a month now) I also take other meds to help relieve symptoms so as not to take more prednisone to help me, if that makes sense? To alleviate pain, I use Norgesic Forte and/or Tylenol as long term medicines, they are basically paracetamol based and can help rather than taking NSAIDs which can be harmful to organs over long periods of time. Of course, with all medicines nothing really should be taken, but in my case they have been very helpful. Discuss first with your doctor for other palliative medicines as every body is different. I also have had a hard time sleeping as I go down each mg, I’ve found Endep to work best.

Do you have any tips to share on getting off Pred? Share your stories and experiences below