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Inside the Patient Entrepreneur’s Mind: David Hojah

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

David Hojah is the Co-Founder & CEO of Loro. 

As a patient entrepreneur, can you describe your personal connection to Multiple Sclerosis and how this experience drove you to innovate the space?

I think my main connection to MS is through my friend and mentor, Jack, who is a scientist from Cornell and CalTech and now lives with the disease. These days, he cannot walk or talk. He is one of my main inspirations for building Loro as well as to help others with similar conditions. I remember discussing with him, how can I help you and how can I help other people? Since I come from a technical background, and he comes from the same, we can speak the same language in terms of translating MS needs into technical solutions. After we came up with the idea for Loro, and once we implemented eye-tracking movement (which I was so excited about in the lab), I came back to Jack with the device and he was so happy. The device enabled him to be more independent, which is my personal motivation: to be able to give others the freedom to do what they want. At that moment, Jack was about to cry and I really felt I was doing something great, not just because I’m close with him, but that I could do something bigger.

What makes Loro unique and how does it meet an unmet need of the MS community?

One of the challenges with MS is they face a lot of symptoms including inability to walk, talk and move their bodies. There is not a lot of technology available to help with these challenges. Loro is unique because by using eye-tracking, we can enable individuals to control and communicate with minimal input. We implement technology to serve the MS community so that they can do more themselves without relying on their caregiver all the time.

Are there any other unmet needs of the MS community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

Honestly we haven’t explored this much yet for Loro, but as an AI companion, the device will be able to better understand the patient and their behaviors in the future. I think this will be helpful for how patients manage their diseases and conditions on a daily basis. Tracking behavior and managing and tracking disease progression is equally as important to address. Loro will be able to collect data and help health professionals to advance the management of the disease to hopefully find a cure. Currently there is no 100% cure, so patient entrepreneurs have a better idea of what to prioritize and how to understand symptoms in relation to the progression of the disease in order to develop the best solutions.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry? Is there a particular healthcare innovation that inspires you?

As a kid, I used to play a lot and create and invent new things. Being an innovator is in my DNA and I’ve always had a passion for creating. I’ve been inspired by Stephen Hawking both personally and professionally in how people can use technology even if they are severely handicapped by disease. A lot of companies are doing amazing things to empower people to live better and more freely. On my team, everyone has relatives or friends with conditions like ALS, MS and other severe conditions. We know their pain very well and want to help all of these people. How can we help these people to become actively engaged in society? The answers to this question is our collective goal. Reaching this goal will help to improve society overall by creating more active members of society like designers and engineers. Professionally, we can help empower people on disability to be able to work a job. Personally, we can ease the burden of the patient-caretaker relationship and have patients feel more engaged and like themselves. Our mission is to help people with physical challenges to feel connected to the world.

Lastly, what do you do for fun to manage the stress of running a business as both a person connected to a chronic disease like MS and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

As an entrepreneur, we love to work too much. We are all workaholics. Especially starting something new, you become so addicted and passionate that sometimes you forget to have a personal life. My advice is work to achieve something but stop to take breaks and have fun. For me, that is by practicing yoga and meditation. It has helped me to manage stress, minimize overthinking, and relax within the confines of my own mind and body. I also love art. I draw and paint a lot which has helped my creativity and ability to innovate. One time, I was drawing and found the solution a particular aspect of the business we were stuck on. Loro is constantly running in the back of my mind so when I do something creative, it can spark a positive change somewhere in the business.

On Letting Go + Self Acceptance While Living With Multiple Sclerosis

The Ideal Self is an idealized version of yourself created out of what you have learned from your life experiences, the demands of society, and what you admire in your role models.

My former ideal self was a smart business owner and writer who had a funny blog and a thriving consulting business. She also wrote a book.

My real self was, and is, a person living with a chronic illness with symptoms that would never allow for any of that to become true. Symptoms like brain fog, racing thoughts, and clinical depression. I’ll get into specifics of each symptom in subsequent posts but here’s the definition of brain fog so you can get an idea.

Brain fog can make a person feel as if the processes of thinking, understanding, and remembering are not working as they should. It can affect their: memory, including the ability to store and recall information.

I clunge so desperately to my vision of what life should be. Of who I should be. Even though I could never be.

I wanted to be like everyone else.

But my brain isn’t like everyone else’s. I kept getting disappointed. And depressed. I remained insecure and I was my own biggest bully. Brain fog made me feel stupid, like a loser, and to me, there was nothing worse I could be. It was unacceptable.

It felt like my mind was a melting pot of chaos. And I wasn’t making it any easier. I was too busy trying to improve myself instead of healing myself.

It was a vicious cycle that was powered by a disturbed mindset. A mindset that said I was the problem. And if I would just change the bad qualities that were bestowed upon me by MS, I would be able to live a happy ideal-self life.

My mind was an unsupervised circus and I attempted to reign myself in with therapy, meditation, medication, spiritual stuff, Instagram quote stuff, religious stuff…ALL THE STUFF. I just wanted to feel better. But mostly, I wanted to achieve whatever goals I set for myself at any given time.

I probably released an ocean’s worth of cortisol during this time because as I’ve said, that is impossible.

CUT TO:

My mind didn’t allow me to let go of my expectations until it was ready.

It was a Thursday in January 2019 when it finally clicked. I was in therapy and verbalizing my racing thoughts. It just came out.

“I am a sick person playing the role of a healthy person.”

I shocked myself, and when the doctored uncharacteristically nodded his head yes, I knew it was time.

Saying it out loud made it real. But also, I had reached a dead end. Each time I tried something new, I did some mental gymnastics and found ways to convince myself this time was different. I wouldn’t fail because (insert skillful justification here.)

This time I tried to become a freelance writer and editor on Upwork. I was chill about the process but quickly learned I’m not capable. The market demands 5000 words for $2 and quick turnaround times. I’m slow like molasses. I realized there was no way I’d be able to deliver quality work consistently.

I gave up one last time. I retired. I was tired, mostly of myself. Things needed to be different. I had a new goal: no new goals. Retirement was about taking it easy. I had spent so much time on my self-help journey so I was already equipped with a mental health tool kit to take me through my days. I also had a new responsibility that was more important: Valentina.

Not trying to live up to an unreachable standard set me free. I felt empowered because I suddenly released the blame. Surrendering made me feel in control. I accepted my lane and no longer felt stupid. I felt like a person who has multiple sclerosis.

I let go and accepted my messy life. I try my best and give myself space when I don’t think it’s good enough. I’m figuring out what I think is good enough. It’s always going to be a journey. For now, I’m buckled in and ready for what’s next. I will certainly keep you posted.

Originally posted on Medium.

Going Digital When You Have MS

ORIGINALLY PUBLISHED ON MS SOCIETY| 07 SEPTEMBER 2018

Technology is so embedded in our everyday lives that I’d challenge anyone to go more than a couple of minutes without using something digital.

 

But what is the future for digital when it comes to helping people with MS? When I was diagnosed ten years ago, I ended up feeling very disengaged from the healthcare system. Now I wonder whether digital solutions could have helped me have a better experience.

How technology helps me with my MS

I use technology for many things relating to my MS and the biggest emphasis is on information and knowledge. When I was diagnosed with MS, I gathered enough literature to fill a bookshelf.

Now, the majority of my information needs are met digitally. I have access to a wider variety of digital information, via the internet, smart devices and patient portals. I’m more informed and can make shared decisions with my healthcare team. The next step is that I want to be able to more easily share my health records with all my doctors, because I’m not just my MS.

CLICK HERE TO FIND OUT HOW TRISHNA USES TECHNOLOGY TO SUPPORT THE MANAGEMENT OF HER MS! 

 

The Implications of Using CBD for Chronic Conditions: Here’s What We Know

Cannabidiol (CBD), a non-intoxicating compound in cannabis, has become a popular alternative to pharmaceuticals. CBD users can sometimes find relief from their conditions without harsh side effects. 

41% of cannabis users surveyed report swapping out other medications completely in favor of cannabis, while another 58% use cannabis and other medication or alternate between them,” researchers stated in a survey by Brightfield Group

While CBD may be a beneficial alternative for chronic conditions, it’s important to consider the implications of using CBD before changing your current regimen.

Diabetes

Studies have suggested that inflammation has a correlation with insulin resistance. This may be the result of the body not moving sugar from the bloodstream into cells, causing excessively high blood sugar. Obesity-related inflammation particularly limits glucose metabolism, resulting in high blood sugar. 

Researchers still don’t know exactly how CBD improves insulin resistance, but often credit it to the compound’s anti-inflammatory effects

According to a report on Type 1 diabetes from the Diabetes Council, “CBD can save insulin-forming cells from damage so that normal glucose metabolism can occur.”

It’s important to note that most claims being made are based on studies with animals, not humans. Using CBD to treat diabetes without more substantiated research and medical oversight could be dangerous. Until further human studies are conducted, CBD can’t be considered a direct treatment for diabetes. 

However, the anti-inflammatory effects of cannabidiol may be beneficial for managing secondary symptoms from the disease. For example, CBD has neuroprotective qualities and may prevent retinal damage.

Cancer

While there is anecdotal evidence of successfully treating cancer with CBD, no definitive studies can back this up. However, we do know that CBD plays a role in cancer prevention and seems to have anti-tumor effects. In a 2012 report, researchers explained, “Evidence is emerging to suggest that CBD is a potent inhibitor of both cancer growth and spread.”  

The U.S. National Library of Medicine explains that CBD is anti-proliferative, meaning it can stop, slow down, or reverse the growth of cancerous tumors. It is also anti-angiogenic, meaning it does not support the generation of new blood vessels, specifically ones that allow cancerous tumor growth. Lastly, it is pro-apoptotic, which means it induces cellular suicide of cancerous cells. 

In addition to these cancer-specific effects, CBD may help patients dealing with pain related to cancer treatment, such as pressure on the organs and nerve injuries. Patients with cancer are commonly prescribed opiates to manage pain, but managing pain with CBD may be just as effective with fewer side effects.

Unlike opiates, which mimic our bodies’ natural endorphins, CBD actually encourages the production of natural endorphins by interacting with a neurotransmitter called anandamide. As a result, CBD is a non-habit-forming pain-reliever. 

It’s important to consider the legal implications before using CBD for cancer, or any other chronic condition. Hemp-derived CBD is legal across the United States, with specific guidelines per state. Idaho, Nebraska, and South Dakota have strict, conflicting rules regarding CBD, so caution should be taken if you live in those states. 

Whatever state you’re in, be sure to get high-quality CBD from producers who follow the guidelines of the law. 

Multiple Sclerosis

According to Neurology.org, “inflammation occurs in the brains and spinal cords of people with a specific kind of MS called relapsing-remitting MS.” CBD has been shown to protect against this harmful inflammation

In a 2011 study with mice, researchers found that CBD diminished axonal (nerve) damage and inflammation. CBD also reduced microglial activation, an inflammatory process that occurs in the central nervous system and is attributed to conditions like MS, Parkinson’s, and more. 

CBD may help users get relief from their MS without causing the sometimes intense side effects that come with pharmaceuticals. Still, CBD may cause some side effects that users should be aware of. Side effects may include:

 

  • Anxiety
  • Changes in appetite
  • Changes in mood
  • Diarrhea
  • Dizziness
  • Drowsiness
  • Nausea

Anxiety and Depression

The hippocampus, the most widely studied portion of the brain, is responsible for the regulation of memories and emotions. Researchers believe the hippocampus plays a major role in depression, and have found that this region of the brain can shrink or decay in those with depression.

Fortunately, the shrinkage does not have to be permanent. The brain is very regenerative and can bounce back as new neural connections are made. This process is known as “neurogenesis” and is an important process to target for antidepressants, contrary to the prior belief that they just work to increase serotonin. 

Where does CBD come in? Research has shown that cannabidiol signals a serotonin receptor called 5-HT1A. This receptor is responsible for controlling many neurotransmitters, and is also the target of some anti-anxiety medications, like Buspirone. Activating this receptor can encourage neurogenesis, and potentially relieve symptoms of anxiety and depression. 

While each individual case is unique, anxiety and depression tend to go hand-in-hand. CBD may encourage the neural regeneration necessary to find relief from either or both conditions. 

Inflammatory Bowel Disease

Inflammatory Bowel Disease (IBD) is caused by — you guessed it — inflammation. A 2009 study found CBD was beneficial for colitis, a form of inflammatory bowel disease. Researchers induced colitis in mice and tracked their gut inflammation, finding that “cannabidiol, a likely safe compound, prevents experimental colitis in mice.”

Another review found “this compound may interact at extra‐cannabinoid system receptor sites, such as peroxisome proliferator‐activated receptor‐gamma. This strategic interaction makes CBD as a potential candidate for the development of a new class of anti‐IBD drugs.”

If you’re considering using CBD with other medications, consult your doctor first. Much like grapefruits, CBD inhibits the cytochrome P450 enzyme, which can prevent drugs from metabolizing properly. 

CBD could also negatively affect the liver by increasing liver enzymes. A 2014 review of CBD saw changes in the liver function of 10% of the subjects, and 3% had to drop out of the study to prevent further damage. Again, consult with a doctor if you want to use CBD for a chronic condition like IBD but are worried about the effects on your liver.

The Bottom Line

Americans spend around $1,200 on prescription drugs each year, which is more than the residents of any other developed country. The price of pharmaceuticals has risen without any improvements or innovation, according to CNBC. This makes CBD an exciting avenue as a potential alternative to standard pharmaceuticals.

It’s important to remember that the effects of CBD will vary by person, and that a lot of the claims we hear about CBD are in relation to animal studies and not humans. It’s also important to be as informed as possible before diving into the complicated world of buying CBD.

Still, many people find success with CBD for their chronic conditions. 

 

Macey Wolfer HeadshotMacey is a freelance writer from Seattle, WA. She writes about natural health, cannabis, and music.

Celgene, Lyfebulb put patient spin on MS innovation challenge

Innovation challenges continue to proliferate in the pharma industry, and Celgene’s is the latest, seeking crowdsourced solutions for multiple sclerosis (MS) patients. Its partnership with Lyfebulb is unique, however, in that it only accepted entries from patients or direct relations of patients.

In the MS challenge with Celgene, Lyfebulb and its Big Biotech partner have narrowed the field to 10 patient entrepreneur finalists, with a “Shark Tank”-style finish set for June 12-13. Each finalist will get 10 minutes to present to a professional panel of judges that will include a patient advocacy group lead, patient ambassador and venture capitalist, plus reps from pharma and the insurance industry. At the end of the second day, one winner will be chosen for the top prize of $25,000. But even more valuable than the money, said Lyfebulb founder and CEO Karin Hehenberger, is the exposure to pharma executives, additional funding sources and other influential industry players.

Celgene first approached Lyfebulb last year in an effort to better understand MS patient needs as it readied its first multiple sclerosis treatment for market. Since then, the FDA has pushed back on Celgene’s candidate ozanimod with a refuse-to-file notice and a request more data on preclinical and clinical pharmacology, delaying the company’s NDA filing until March of this year. The new ozanimod data hit its targets, though, and analysts project the drug could still reach $2 billion in sales in the already competitive oral MS drug market. In the meantime, Celgene has also become an M&A partner for Bristol-Myers Squibb in a $74 billion deal approved by shareholders in April.

The Celgene challenge for multiple sclerosis is Lyfebulb’s seventh patient-sourced contest, with previous partners including Novo Nordisk for diabetes, Helsinn Healthcare for oncology and United Healthcare for depression and anxiety solutions.

Hehenberger, a physician and Type 1 diabetes patient who has walked the walk of chronic disease with two transplants and a pacemaker implant, launched the company in 2014 to help give patients a voice in industry solutions.

“We believe insights and solutions from patients can be leveraged by pharma and by tech and device companies to enhance their pipelines, to get closer to patients and to learn what it’s like to live with these diseases,” she said. “For the patients, they finally really get heard. For pharma companies, instead of just being patient-centric, they now work side by side with patients.”

Tuesday, May 21, 2019

Source: Beth Snyder Bulik, FiercePharma

Lyfebulb and Celgene Announce Finalists for 2019 “Addressing Unmet Needs in MS: An Innovation Challenge”

Lyfebulb and Celgene Announce Finalists for 2019 “Addressing Unmet Needs in MS: An Innovation Challenge”

Finalist patient entrepreneurs recognized for potential of innovations in multiple sclerosis (MS)

Image at Celegene 2019 challenge

NEW YORK, May 10, 2019 /PRNewswire/ Lyfebulb, a chronic disease-focused, patient-empowerment platform that connects patients with industry to support user-driven innovation, and Celgene Corporation (NASDAQ: CELG) announced the 10 finalists chosen for the Lyfebulb-Celgene 2019 “Addressing Unmet Needs in MS: An Innovation Challenge.”

The following finalists will compete at the Innovation Challenge Summit on June 13, 2019, for a $25,000 monetary grant to further develop their proposed innovations:

Celgene Logo with tagline

  • Abilitech Medical, Shawna Persaud: Medical device intended to help people with MS with mobility challenges use their arms
  • AXS Map, Jason DaSilva: Web platform that allows users to locate, rate and review the accessibility of any location in the world
  • BeCareLink, Alan Gilbert: Predictive artificial intelligence (AI) digital therapeutics platform which remotely measures clinically validated assessments of cognition and motion to help improve quality of care and reduce costs for people with MS
  • C. Light Technologies, Inc, Zachary Helft: Neurotech and AI technology using eye motion measured on the cellular scale to monitor disease state in people with MS for treatment efficacy feedback
  • Dance4Healing, Amy Li: AI-powered telehealth live video platform which brings community, exercise and physical rehabilitation into the home to encourage healthy behavior change
  • Icometrix, Wim Van Hecke: AI-based brain imaging solutions to monitor disease progression
  • Leoplus USA, Kinza Kasher: Device and app which aims to support communications between patients and care partners
  • Loro co., David Hojah: Socially assistive companion robot for people with mobility challenges
  • Moodify, Kate Milliken: Web-based tool which builds communities, aims to reduce loneliness, creates searchable content moments and tracks the emotional journey
  • ThermApparel LLC, Bradley Dunn: Lightweight, comfortable and concealable cooling apparel for people with extreme heat sensitivity

“At Lyfebulb, we build communities of patients with chronic disease around a message of inspiration and hope for the future. Each of these patient entrepreneurs is inspirational, as they have taken their frustrations of living with their disease – or observing it in a loved one – and are working to turn those insights into business solutions to help members of the MS community live their daily lives more comfortably,” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb.

These finalists are being recognized as outstanding patient entrepreneurs – those who have been affected by MS as either a patient, loved one or support partner – whose companies are helping develop solutions to address an unmet need in MS. A “pitch session” will be held at the Challenge Summit, and a winner will be chosen by a diverse group of experts in the MS, healthcare and business communities. The panel of judges will include:

  • Tim Coetzee, PhD: Chief Advocacy, Services and Research Officer, National Multiple Sclerosis Society;
  • Adam Fine: General Partner and CEO, Windham Venture Partners;
  • Elizabeth Jones: MS Patient Ambassador;
  • Darin T. Okuda, MD, MS, FAAN, FANA: Director, Neuroinnovation Program, Multiple Sclerosis & Neuroimmunology Imaging Program, UT Southwestern Medical Center; and
  • Deneen Vojta, MD: Executive Vice President, Global Research & Development, UnitedHealth Group.

“We are excited to bring together these patient entrepreneurs, judges and members of the Celgene and Lyfebulb teams for an engaging and interactive summit,” said Terrie Curran, President, Celgene Inflammation and Immunology. “Ultimately, we hope to foster discussion about ways to advance innovation in the space and look forward to awarding this grant that will help support people with MS and their families.”

About Multiple Sclerosis
Multiple sclerosis (MS) is a chronic, often debilitating disease that affects approximately 2.5 million people worldwide. In MS, an abnormal response of the body’s immune system causes inflammation and damage to myelin—the substance covering nerve fibers—in addition to damage to nerves themselves. Signs and symptoms are varied and can pose significant challenges in daily life.

About Lyfebulb
Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients and industry (manufacturers and payers) to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, and depression/anxiety.

See www.lyfebulb.com, Facebook, Twitter, Instagram, Karin Hehenberger LinkedIn, and Lyfebulb LinkedIn.

About Celgene
Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global pharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through next-generation solutions in protein homeostasis, immuno-oncology, epigenetics, immunology and neuro-inflammation. For more information, please visit www.celgene.com. Follow Celgene on Social Media: @Celgene, Pinterest, LinkedIn, Facebook and YouTube.

For inquiries, please contact:

Lyfebulb
Karin Hehenberger, M.D., Ph.D., CEO
917-575-0210;

5 Hacks that Help Me Manage MS Fatigue

Article By: Lyfebulb Ambassador Trishna Bharadia

Originally published on Life Effects by Teva  | 07 February 2019

Fatigue has been the one MS symptom that has been a constant for me from the point of diagnosis. It’s not that unusual, since fatigue is one of the most common symptoms of MS which means I know that I’m not alone in experiencing it.

What can make it harder to cope with though is that people experience fatigue in different ways. So just like there’s no “one size fits all” method of managing your MS in general, the same can go for fatigue.

When I try to describe fatigue to my friends I say it’s like “walking through quicksand with boots filled with water whilst experiencing the world’s worst hangover.” Fatigue hits me in two ways – physically and mentally. Physically my entire body slows down, to the point where every movement feels like a monumental effort. Mentally, I’m overtaken by a thick fog and just putting a single sentence together becomes a full-on workout for my brain.

People who don’t experience this often misunderstand the severity, so people – even well-meaning ones – sometimes have frustrating responses. I’ve made a list of the things people say about fatigue that I really wish they wouldn’t.

5 things not to say to someone with MS fatigue

Fatigue isn’t like regular tiredness. It can be completely arbitrary and disproportionate to your activity levels. Plus, it feels different; I can quite easily tell the difference between regular tiredness and MS fatigue.

Sleep doesn’t always help. In fact, a lot of the time a nap is no more than a sticking plaster. Even if it might make me feel better for a few hours, very quickly I’ll be back to square one. It’s like never being able to fully recharge the battery on your phone.

Seriously?! I would love to be able to do everything that I want to do, when I wanted to do it. When I think about having a “lazy day” it often involves watching a movie, eating ice-cream, reading a book or chatting on the phone with a friend. When fatigue hits, even doing those things uses too much energy.

Everyone with MS is different and can experience different sets of symptoms. While fatigue is common, not everyone experiences it. People also have different coping mechanisms depending on how fatigue affects them. So it might not always be obvious if someone is experiencing it, if they’ve been able to manage it effectively.

The way an individual views each of their MS symptoms is personal. Someone I know with MS once told me that for them, losing their ability to walk properly and having to use a wheelchair was by far the lesser of the two evils when compared with his debilitating fatigue. For someone else, the opposite might be true. So, if you’ve never experienced it, don’t make a judgement on it.

Things I wish people would say when I experience fatigue

If you do know someone who is experiencing fatigue and you’re wondering what you could say or do for them to offer solidarity and support, I have listed three of the most important things that I would find useful:

I dread getting invitations and having to turn them down because the place is too far, the timing isn’t right, or I feel like I can’t cancel at the last minute if I’m having a bad fatigue day. Being able to do things closer to home and at times when I know my energy levels are likely to be at their best can make things easier when planning social occasions. And being understanding if I have to cancel at the last minute also goes a long way. I wouldn’t cancel unless I really had to and I’ll already be feeling rubbish because I know I’m going to miss out.

Offering a lift, picking up some shopping and suggesting an alternative if we’ve had to cancel plans are all things that can make things easier. I was at a wedding this summer and it was going to be an all day/late night event. The couple whose wedding it was offered me use of their hotel room during the day to be able to rest if I needed to, because I’d told them I might not be able to stay the whole time. Knowing that there was an option to rest if I needed to, meant that I could relax and enjoy the day much more. But please, don’t assume you know what will help – just ask me!

When fatigue hits I feel rubbish. I feel frustrated. And my mood completely dips. Something as small as receiving a nice text message from someone, making exciting plans for a future date, or doing something that will make me laugh or smile just helps to lift my mood. It won’t cure the fatigue but at least my mood might improve!

Hacks to help you manage your MS fatigue

There are no real hacks to cure fatigue, there are just ways to try and manage it. I’ve had MS for ten years now and fatigue was one of my first symptoms – I’d been experiencing it for quite a while even before my diagnosis. I can’t actually remember what it’s like to feel 100% full of energy anymore! But over the years I’ve learnt what works for me and what can help to optimise my “battery levels.”

I make lists. Lots of them. I prioritise. I schedule. I keep an appointments diary for EVERYTHING. I colour code. I cross-off and tick. Writing things down not only helps me to remember things when my brain gets foggy, it helps me to see very clearly what the most important things are, and which things are going to need the most physical and/or mental energy. I can then do those things when I know my energy levels will be at an optimum and do the “easier” or “lesser” tasks when my battery is running lower. This also helps me to pace myself – if I know I have a particularly busy day scheduled, I’ll make sure that the following day is more relaxed.

I find that waking up at around the same time (even on weekends), eating my meals at around the same time, and having a regular bedtime routine can really help my body to know what’s happening and when. This can also help with other symptoms that can exacerbate fatigue, such as bladder issues. So not drinking too much before I go to bed means I’m less likely to have disturbed sleep due to getting up to use the bathroom in the middle of the night.

It sounds counter-intuitive but regular exercise actually makes me feel better. Muscles which aren’t used regularly become weaker, which means that more energy is needed to carry out general tasks. This makes fatigue worse. Exercising regularly will keep my body in as good a shape as possible. I’ll adjust what type of exercise I do depending on my energy levels. I love dancing, and that’s something I’m able to adapt if I’m having a “bad energy” day. Otherwise, a gentle walk or stretching and muscle strengthening exercises are just as good. Exercise also helps me to sleep better and feel good about myself.

This has been really hard for me. I’ve always been very independent and I like to do things myself. However, I’ve learned that accepting help often means that I can get more done or enjoy things more because I’m conserving precious energy. I have a few people who are close to me who I know I can really rely on for support. They understand me and my fatigue and I know I can call upon them if necessary.

In time, I’ve learned to accept things more, deal with the frustration of living with fatigue (even though it’s still annoying!) and develop alternative interests that fit around the ups and downs of my energy levels. I now enjoy being at home just as much as being out. I’ve learned to enjoy my own company, so when I do have to stay at home I’m not as sad about it.

Most of all, I’ve learned to be kinder to myself. If I can’t get something done, I just let it go.

UK/MED/19/0001 January 2019

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