Fibro Falling

“How did you break your ankle?”

I get asked that a lot: I’m still limping, 7 months later. I was walking in Bali and I fell. No motor bikes. No bicycles. No alcohol. No bumpy footpaths. No drugs. Just walking. I fell.

Gait and balance are severely impaired in women with fibromyalgia, according to “Altered Functional Performance in Patients with Fibromyalgia” published in the journal Frontiers in Human Neuroscience.

Only women were included in this study as the vast majority (80%-90%) of people affected by fibromyalgia are women. The study showed that walking speed was significantly reduced in women with fibromyalgia, compared to women without pain, probably due to the reduction in stride length and frequency.

When the researchers analysed the association of gait and balance impairment with functional performance and the level of pain, they found that high levels of pain, depression, stiffness, anxiety, and fatigue (DUH!) were the main parameters associated with reduced gait and balance.

Finally, the researchers reported that they observed an abnormal pattern of body sways during balance tasks in fibromyalgia patients. They thought this could be associated with changes in the motor control system, and might explain why fibromyalgia patients experience a higher rate of falls.

Overall, the findings highlighted the relevant role of postural control and balance for daily activity functioning in fibromyalgia patients.

So, I’m doing hydrotherapy, pilates, deep-water running, recumbent cycling and indoor rowing.

Bring on the strong core muscles, a 6-pack and balance!

Home (ever-so) Sweet Home

I left Australia 2 weeks ago for a 4 week holiday in Bali (that I had saved up 5 years for).

I had the best intentions. I was going to walk everyday. I was going to do yoga. I was going to quit smoking. I was going to drink lots of (bottled) water. I was going to look after my Mommy who was recuperating from an operation. I could do all of these things because I always feel better in Bali – maybe it’s the type of heat or the humidity? I don’t care why – it just feels good!

For the first 5 days, I walked approximately 4kms a day. I felt great. It doesn’t feel like such a great distance when there are so many new things to see. I didn’t quite get to the yoga. I was down to about 5 cigarettes a day. I banned soft drinks from our villa…

20160802_162509And 2 days after my mother arrived, I broke my leg and ankle – not on a motorcycle or doing anything dangerous – just walking along the street.

So Mommy has spent more time looking after me (at least, she can walk) than me looking after her. Needless to say, no more long walks. I never made it to yoga. Hours of sitting in one place, looking at a gorgeous pool that I can’t swim in, has diminished my desire to quit smoking (actually, not my desire; more my willpower!) And the sugar in Coke (and lemon meringue pies) makes me feel better…temporarily.

I don’t think either Mommy or I have ever said this before, after a holiday (which, if you do the maths, we are leaving 2 weeks early) but I am so glad to be going home!

Gotta Laugh, Right?

I wouldn’t believe it unless I had experienced it…and guess what? I did.

I had to return to the hospital today to have my cast cracked open for flying. It took me half an hour to get from our villa to where we could catch a cab. Mum had bought a stool so I could sit on it to climb over the different size steps all around the villa. Hop, hop, sit, slide legs around, push myself back up, hop, hop, etc.

Got to the hospital and the surgeon was late again (yeah! I know! Doctors, right?) Then they had to saw into my cast – OMG! My leg is still swollen underneath. I screamed more from this little procedure than when I broke it. You know those sticks doctors use to look down your throat? I bit through 2 of them, trying to contain my pain.

Then it was ‘wait for meds and the report’ time. In total, it took 3 hours at the hospital despite having an appointment and the hospital calling me 3 times during the day to make sure that I was attending.

Finally, Mum and I hopped into a cab, via McDonalds, to go home.

We arrived and it was totally dark. I couldn’t even contemplate the path in the dark. The (wonderful) taxi driver and Mum carefully followed the pathway to find out what was wrong. Mum was sure she had left the lights on for our return. It seems we were out of electricity.

We phoned our host 3 times (except I had saved the number wrongly and we were calling our tailor!) I couldn’t eat any dinner because I was afraid that I would need to go to the toilet and wouldn’t make it in time – it really is a long way from the front to our villa using crutches and a stool.

Finally, we got through to our host’s girlfriend. She doesn’t drive and had to find a lift over to re-fill the electricity.

Back at the villa now – all I want to do is click my heels together and say ‘there’s no place like home!’

WARNING – Venting to Follow

I am currently in Bali – lucky me, right?

I scrimped and saved for 5 years so I could have 4 weeks of warmth, massages and relaxation. After 5 days, I fell and broke my ankle and leg – go me! Now I have to return home to have an operation.
These things happen, right?

This is not what has me pissed off (at least, at the moment).

I have been a member of a particular fibro site on FB for at least 2 years. I post pertinent information, answer questions when I can and so on – you know what I mean. There are also a variety of other types of posts from members, like

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and

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and

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and

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***names have been removed to protect identities

You get the idea, right?

So, today (after being blocked by FB for a month (long story but it involves this article) which explains why you have not heard from me) I posted the following:

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TAKE ADVANTAGE OF MY BAD LUCK!
$1500 ONO

I have a fabulous 3 bedroom villa in Bali until August 23rd but (lucky me!) I have just broken my leg and have to come home.
So…does anyone want a cheap holiday in Bali?

  • Situated on a quiet street (Jalan Kresna), right on the border of Seminyak and Legian.
  • 3 bedrooms – all with their own bathrooms and king-sized beds!
  • Fabulous private pool – and we’ll leave you all our pool lounges!
  • Lovely host – Benjamin.
  • WIFI
  • Walking distance to most places (if you have 2 legs):
    • 2.2kms to Bali Deli
    • 2kms to Double 6 beach (via Jalan Arjuna (Double 6 street))
    • 2.1kms to Carrefour

The villa is advertised on AirB’n’B if you would like to check it out

DM for any further details.

It was deleted.

You would think that there might be some compassion for a fellow fibro sufferer; but no! the post had nothing to do with fibro so into the ether it was sent; despite the last four approved posts (above) not really associated with fibro, either.

20160802_162509Now, I am probably over-reacting but I am sitting in Bali besides a gorgeous pool that I cannot swim in, I am about 10 minutes away from some absolutely fabulous bargains but I cannot go shopping, I saved enough money to have a massage everyday but, guess what? I can’t do that either. I am stuck either on a lounge or in my bed at my villa with my mother (who has her arm in a sling after a shoulder operation – I was supposed to be looking after her), her partner (who is legally blind and more than partially deaf) and my uncle (the last man standing!) So I’m feeling pretty hard done by – wouldn’t you?

As such, and I know that they don’t give a shit, I am no longer a member of that group.

If you feel like venting today, please feel free to do so in the comments below – just let it all out!

P.S. Anyone want a cheap holiday?

 

Escaping from the Cold

There’s only 6 weeks until I escape to Bali for 4 weeks and, of course, I’m a little worried about the travelling.

One of the people, from a Facebook group that I belong to, just went to Jamaica for two weeks then spent 5 days in L.A. She, too, wasn’t sure how she would cope with Fibro and travelling.

Her travel advice-

♣ Ask your travel agent to request disability assistance. We had quite a few change-overs at different airports but, thanks to the request, there was staff waiting with a wheel chair or a golf trolley to take me around airport. I don’t usually need a wheelchair but waiting in line to check in, or waiting to go through customs or security can take a long time and having the wheelchair made a huge difference. It even meant getting through was quicker as the disabled are given priority. Also, getting from one side of the airport to another was made a lot easier. The staff knew the layout of airport better than me and in all honesty there’s no way I could have walked that far and still caught my flights on time. Some airports are massive!

♣ I’m not sure how to do it but I saw a lady on my flight who had problems with her legs and had reserved seats to put her leg up on. If you can, try to get seating that allows leg space. Fibro is painful enough so having space to move your legs, stretch, etc makes a difference.

♣ We flew Qantas to and from the States and then American Airlines. The differences in seating space was surprising. If I had of known in advance, I would have paid extra for ‘premium economic seats’ on American Airlines. Sitting for hours in bad positions, unable to move or stretch triggered my pain. It’s worth paying a bit extra, if you can, for comfort as discomfort can have a domino effect.

♣ Being tired from travelling, in pain and arriving in a foreign country in the middle of the night can be very disorienting under the best conditions. Try to make things as easy for yourself as you can. I pre-booked shuttles to hotels in advance which worked out ok at one location, but when we arrived in L.A. I felt so unwell I couldn’t think straight let alone try to find the shuttle stop. We ended up paying for a cab to hotel simply because I wasn’t in the right frame of mind, in too much pain from the bad seats on the plane; and too tired. I have since learnt that I didn’t have to pre-book shuttles as you can pay on the spot and, sometimes, the cab works out cheaper!

♣ If using AirB’n’B to book accommodation let the place know you have mobility issues and make sure the dwelling is easy to access. I had to cancel our accommodation on arrival as it was physically impossible for me to access the stairs up to the residence and the cliff it was located on would have been too hard to walk up every day (photos of location and descriptions were misleading!).

Blue-LAgoon♣ Plan rest days into your schedule. It can be hard when you’re on holidays and wanting to see as much as you can but the best way to avoid a flare is to pace yourself. I made sure that after a really busy day we’d have a lazy day. Also, try to pick one or two ‘must do’ things. For me, it was swimming in the Blue Lagoon in Jamaica. It was physically hard to get to the location but I managed it and we spent about an hour swimming. I was happy as I’d accomplished the one thing I had my heart on. Because of the limitations of Fibromyalgia you may not be able to do all the tourist-y things or activities others do, but if you pick one or two ‘must dos’ for your trip, you’ll feel great when you do it and any other activities you manage is a bonus!!

So, with this advice in hand, I’m off to relax by a pool with a freshly squeezed juice.

Struggles Only #Exhaustipated People Understand

Just a little (“poke fun at ourselves”) fun from Nadia Sennet at SHE ‘SAID’

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Must. Stay. Awake.

I’m never more than a slow blink away from falling face-first into my laptop in a pile of drool and snores – I’m literally struggling to keep my eyes open writing this article.

If you also battle constantly feeling tired, the good news is, there’s usually a medical reason for it that can be resolved with appropriate treatment. For the unlucky ones of us though, the struggle is very real…

1. There is literally no place or position in which you couldn’t fall asleep.

2. Getting out of bed in the morning is HELL.

3. ALL forms of morning-time activity are slow torture.

4. ESPECIALLY extra-early morning meetings.

5. You’ve had to develop a repertoire of excuses for being late.

6. No speaking can take place until coffee has been consumed.

7. And one coffee is never, ever enough.

8. You have been known to fall asleep at your desk.

9. A comfy couch is your kryptonite.

10. You’ve turned down social events in favour of napping.

11. Weekend time = sleep time.

12. People who schedule brunch catch-ups earlier than 11am make you want to throat punch them.

13. Any form of exercise immediately signals your napping instincts.

14. You resort to snacking constantly to stay pepped up at work.

15. And if you don’t get your fix every few hours, severe hanger strikes (otherwise known as FEED ME OR I WILL CUT YOU).

16. Boozing always results in you crawling into the nearest bed or couch and dozing off.

17. You start to freak out if you’re not in bed by 10:30…

18. And as such, have been known to leave parties early because bed is calling.

19. People who interrupt your sleep inspire a special kind of rage.

20. You regularly zone out mid task and conversation because you’re too tired to think.

21. You’d literally choose sleep over sex without hesitation.

22. Your bed is your fave place in the world.

23. Let’s face it. If there was a way to make a career out of sleeping, you’d take it in a heartbeat.

Images via giphy.com and tumblr.com.

Do you relate to the struggle of always feeling tired?

 

Catching Up

I haven’t really checked in with you guys recently so I’m going to try to catch you up ASAP. So, what’s up with me?

Housemate

After a very long (and oh-so-complicated) 18 months, my housemate has left. We had an on and off relationship for a while which ended with us being ‘just friends.’ Anyway, it’s been a month since he left; and it’s like this great weight has been lifted from my shoulders. It had gotten to the stage where everything I said was misinterpreted by him – so we just kept fighting. I didn’t realise how hard it had become: I was trying to be so careful with what (or if) I spoke to him; whereas, when we first met, I remember how much fun, and how I used to feel when we were hanging out.Boris and flowers I really hadn’t realised how much our relationship had changed until I was away from it (permanently).

We are supposed to still be mates BUT he posted my key back to me, didn’t help with cleaning up after him and his cat (it’s taken me a month to clean everything alone!) and hasn’t wanted to talk to me all month…I don’t need friends like that!

Garage Sale

With all the cleaning, I decided it was time for a clear-out. I emptied my house out (as did some of my neighbours) and we had a multiple household sale. 20150724_182631It was huge…and very hard work.

We ran around, the night before, putting out all of our signs. Then it was up at 6am. (I had practiced getting up early for the two days prior).

Although we all made some money and got to know each other, I really don’t think I’ll be doing that again!

Million Dollar Minute

Four days later (and more practice at getting up early), I arose at 5am so I could wake up properly, get ready and go to Channel 7 studios for the opportunity to appear on Million Dollar Minute.

profileI made it (and, for those in Australia, I will be on TV on Thursday 20th August at 5.30pm). I can’t tell you what happened – non-disclosure statements and all that – but I can tell you that, if you don’t watch on the 20th, you won’t see me again!

It was great fun and I met a lot of very clever people.

After all of that, I crashed (of course) and I really have had not the energy (spoons) to do much more than sit on the couch for the last 2 weeks. However, I am building up to some more energetic activities.

Rescue Dog

With the cat (and Simon) gone, I have decided that I would like a dog. I have never had a dog before and it has to be a particular kind of dog as I live in a 2 bedroom unit with, only, a small courtyard and I can’t walk particularly fast or long distances. I would prefer to rescue a dog BUT, with my particular requirements, this may not be possible.

I am religiously perusing the rescue dog sites (as well as nearly being ripped off by 2 interstate people who were looking to re-dogs).

This is Coco - a pomeranian/chihuahua mix.

This is Coco – a pomeranian/chihuahua mix.

This is Rocky, a maltese mix.

This is Rocky, a maltese mix.

I’ll let you know how it goes.

Daiichi Sankyo Research Study

Last week, I wrote about the Daiichi Sankyo research study. I have decided (after consultation with my GP) that I will be signing up. The first part is a blind study so I’ll be telling you about how I feel, if I am accepted – I have to give up my Lyrica and Sertraline (scary!)

LIVING WELL with FIBROMYALGIA

The next issue of LIVING WELL with FIBROMYALGIA is due out September 1st. It has been a VERY difficult issue as our contributors appear to be slowly disappearing so, sadly, unless I can get some more volunteers, the September issue will be the last one. If you want to write for us, please email me at contributions@fibromodem.com.

Now you’re all caught up. What’s going on with you?

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Utopian Worldwide Wellness

You may have noticed a new widget on my site – Priceless Vitality.

Ian-PericarrowA friend of mine, Ian, has started a non-profit organisation that is almost Utopian. The concept behind it all: supporting and sharing wellness worldwide by providing access to quality health focused information, products and services for everyone.

Priceless Vitality is anywhere with an internet connection. Anyone in the world is welcome to use Priceless Vitality for free, and there is a growing range of internet delivered “worldwide” listings. (Because this initiative is just starting out, the coverage is currently limited by the level of community awareness.) You can create listings on the site for offers as well as requests for something you need. If there’s anything that you could really use, you can create a request listing on our site asking for it.

Offers could range from organic food to private health cover, and can be open to everyone or targeted to specific categories of people. These categories are based on things like age, income and illness type. Providers share what they can and those who receive are free to pay the suggested price, pay more or negotiate to pay what they can. Payment could take the form of a smile, a trade, a payment plan, money, an alternate economy or paying it forward. The price is open to negotiation between the recipient and the provider.

As well as connecting people through this free service, Priceless Vitality intends to provide wellness information and raise funds to subsidise providers, pay for therapist training and support projects that improve people’s quality of life.

Mission:

WorldPriceless Vitality is committed to supporting and sharing wellness worldwide by providing access to quality health focused information, products and services for everyone. We believe that health and happiness can become a new “normal”.

Our World Wide Wellness network helps people gain access to health care and support.

Vision:

We facilitate compassionate action providing a platform to make a healthy life affordable across the globe. We make access to health focused goods and services available to everyone and support projects that nurture a sharing oriented community spirit.

Priceless Vitality is proof that care is sustainable and shows that people are happy to give some wealth in exchange for a stranger’s health – doing all we can to support a happy and healthy planet for generations to come.

Values:

We bring together the Individual, the Community, the Medical field and the Alternate health field in an ecosystem of honesty, integrity and a shared goal of community health.

At the heart of everything we do, our mission, vision and services are all underpinned by these core values:

  • Compassion: With heartfelt respect and empathy we do our best to improve the quality of life for everyone who wants our help. Working with respectful understanding and deep integrity towards the shared Wellness of everyone on the planet.
  • Innovation: We are open-minded – constantly listening, adapting and exploring new ways to deliver a genuine positive impact on people’s lives.
  • Health: In sickness and in health we do all we can to make affordable health measures available to everyone. This includes mental, physical and environmental health. Bringing treatment to those who are suffering and proactive health options to others.
  • Passion: We are driven and committed to make health and happiness the norm for generations to come. Our dedication to creating sustainable smiles is electric and contagious!
  • Collaboration: We are for something and against nothing. Working together as one global family. Encouraging individuals and organisations to combine their efforts and help each other towards shared goals. Creating products and services that produce something far greater than the sum of their parts.

Isn’t it an idealistic and wonderful model? (No, I don’t want to hear the Debbie-Downers – there are plenty of reasons why this won’t work BUT, with honesty, integrity and a shared goal; it absolutely CAN work!)

I’m asking you to share the site with your health providers, your friends…oh, just everyone, please.

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Lifestyle Management With a Chronic Illness

by Harper Spero for HEALTH PERCH (with parenthesis by me!)

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During the first ten years of my life, my mom was on a mission to figure out why I had chronic ear infections, eczema, abscesses, and ongoing dental issues. Finally, when I was 11, I was diagnosed with Hyper-IgE, a chronic illness.

The National Institute of Health defines a chronic illness as a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, cancer, HIV, Alzheimer’s disease and dementia, multiple sclerosis, Parkinson’s disease, cystic fibrosis, Crohn’s disease, and arthritis (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

While most of these chronic diseases are familiar, there are hundreds of lesser-known diseases, including Hyper-IgE (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

Hyper-IgE syndromes (HIES) are rare, primary immune deficiencies characterized by elevated serum IgE, dermatitis, and recurrent skin and lung infections. When I received the diagnosis, I had no idea what that meant or what to make of it. (Sound familiar?) I now had something to hang my hat on—but what exactly was it?

I was on medications here and there, dealt with many bumps along the way, and changed my diet numerous times, but never actually took complete control of my health. I chose to treat the symptoms as they arose instead of treating the illness as a whole. When I was 27, a cyst the size of a golf ball was discovered in my right lung. Shortly after having surgery to remove a quarter of my lung, I realized I needed to take complete control of my health. I didn’t want to be defined by my illness, but I also knew I couldn’t hide anymore. I knew I needed to evaluate my health and wellbeing and figure out what lifestyle changes I could make.

So I took a time out. I evaluated all facets of my life including environment, work, social life, diet, exercise, and even the way I processed information. This evaluation brought me to these 10 steps that can apply to managing most chronic illnesses. All of these points have helped to vastly improve my outlook and to move me in the right direction towards a healthier, well-balanced, satisfying life.

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  1. Find a team of experts

When you receive a diagnosis from a test result, a medical exam or a conversation with a doctor, it’s important to determine the best people to add to your health and wellness team. A key person should be one doctor that specializes in your specific chronic illness and with whom you feel comfortable, confident, and safe.

Another key component is finding specialists who may be able to support you with the different aspects of managing life with the chronic illness. This can be a team including (but not limited to) a nutritionist, acupuncturist, massage therapist, health coach, or physical therapist.

  1. Empower yourself

Your doctor can provide a ton of information that will allow you to educate yourself. This is the time to take ownership of this newfound challenge you’re facing. It’s not always easy, but you have control over the way you manage your life and can educate yourself with the resources available.

Be wary when reading articles about your chronic illness. It’s easy to assume one bad thing that happened to a single person could happen to you. Living your life in a constant state of fear won’t allow you to enjoy the life you were given.

  1. Create or join a supportive community

When facing a new diagnosis, it’s often a struggle to determine who to talk to and who to relate to. Find or create a like-minded group of people (as small or big as you’d like) that are experiencing similar circumstances. It may be beneficial to bounce ideas off of one another to avoid feeling alone. There are hundreds of Facebook pages for chronic illnesses, message boards, and online platforms for support. Additionally, there are meet-ups and other groups that get together regularly to discuss chronic illnesses. These add a personal, face-to-face element of support for those who are going through similar situations.

  1. Start a dialogue with your loved ones

Family and friends are there to support and love you unconditionally. It’s important to find the words to tell them what’s going on with you, but also to help them help you. Everyone reacts to these types of life situations differently—some take it much harder than others. Some people are quick to jump to conclusions and determine how they think you should manage your illness. One of the best resources for those with a chronic illness and for their family is a How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. While the book provides amazing tips for dealing with cancer specifically, it’s also relevant to all chronic illnesses.

Surround yourself with people who inspire, motivate, and support. You have the ability to choose who you want in the movie of your life—those who play a leading role, others who are extras, and the final group that doesn’t make the cut. Remove toxic relationships. They can serve as an added burden when managing life with a chronic illness.

  1. Don’t let your illness define you

64. More to meIt’s really easy to get consumed by doctor’s appointments and the overall maintenance of managing a chronic illness. It’s also extremely important that your illness does not define you or your life. You should always have the ability to allow fun, pleasure, and happiness into your world. In Danea Horn’s book Chronic Resilience, she states, “If you ‘own’ your illness, that probably means it has become your identity … you give a level of importance to the disease—one it does not deserve.” Remind yourself what is important to you and what you enjoy doing most. Be sure to implement those things into your daily routine.

  1. Be conscious of your diet

(Okay, this is where I really, REALLY suck!) Evaluate the foods that you eat. Do they benefit your health or do they drain you? Amie Valpone, founder of TheHealthyApple.com says, “Eating for wellness is a huge topic these days. Food sensitivities are increasing and people are understanding certain healthy foods (such as lemon, cilantro, etc.) are causing inflammation in their bodies along with the major toxic triggers such as gluten, dairy, soy, and sugar.” Valpone suggests sticking with one-ingredient organic foods such as raw nuts and seeds, beans, and organic animal products.

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  1. Keep fitness top of mind

95. yogaThis doesn’t mean you need to be at the gym every single day, but it does mean every bit of physical activity can help. Staying active helps the body function better and can quiet the mind. Fitness can include walking, running, spinning, rowing, yoga, weights, swimming, and more. Everyone has his or her preferred method of physical activity. Try out different gyms, studios, machines, classes, or teachers to determine what’s the right fit for you. Just because one person loves yoga doesn’t mean everyone else does. There are plenty of podcasts, apps, and online video platforms that provide exercises you can do in the comfort of your home or office.

  1. Give yourself a break

Managing life with a chronic illness can be exhausting. Keeping track of medications, doctor’s visits, and ongoing symptoms is nothing short of daunting. “We beat ourselves up for the way our body is letting us down,” Horn says. It’s important to cut yourself some slack and understand what you’re going through isn’t meant to be easy and there will be forks in the road. Sometimes your body isn’t going to function the way you’d ideally like it to and it’s imperative to be mindful and accepting of that. Your mind and body will benefit.

  1. Stay organized

With bills, prescriptions, doctor’s appointments, vitamins, and more to keep track of, staying organized is vital when managing your chronic illness. Find the best way to stay on top of your calendar. Google Calendar or an old-fashioned calendar/datebook can be helpful to keep track of when you start a medication, doctor’s visits, and symptoms.

  1. Give back

Sometimes it’s hard to imagine, but there are people in worse shape than you. Another person’s chronic illness may be getting the worst of them, they may be struggling financially, or they don’t have any online or offline support. These are likely the people who may not reach out for help but would appreciate any bit of support you can provide. Whether it’s virtual or in person, any way you can give back to those facing a chronic illness will not only be appreciated by the recipient but also extremely rewarding for you.

There is no question that living with a chronic illness can be challenging. Take ownership of the aspects of your life that you do have control of and you may reap the benefits of this empowerment.

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