Website update: New resources on employment and MS

Do you find it challenging to work with MS? Are you concerned about disclosure?

Here are some helpful resources: www.invisiblems.com/employment

Newly diagnosed with multiple sclerosis? You’ve Got This!

I’m an MS veteran, but a newcomer to the MS online community. I’ve only been active on Twitter, Facebook, Pinterest and other platforms for the past year. And I didn’t know what I was missing! I’ve discovered the internet is more than a source of factual information about MS. It’s a web of support I can access – at any time, from anywhere – and can always count on to cajole, inspire and uplift me.

If you’re new to this disease, I encourage you to tap into this resource and connect with other people living with MS. They understand exactly what you’re going through and have a lot of practical advice and wisdom to share. Many of them have done so through Healthline’s “You’ve Got This! video campaign – a wonderful repository of personal experience stories designed specifically for you. Here’s my contribution – along with a few tips, based on what I’ve learned since being diagnosed.

Don’t go overboard with your research

I’m a journalist by training, so doing research comes as naturally to me as breathing. The first thing I do whenever I’m tackling a new subject, or learning a new skill, or traveling to a new destination, is to learn EVERYTHING I can about it. So, when I was diagnosed with MS, I got on the internet as soon as I got home from the doctor’s office and started reading. That was a big mistake! The more I read, the more upset I became. MS comes with a long list of potential consequences, and learning about them all at once was too overwhelming. I soon realized that it was better to restrict my research to what I absolutely needed to know. I had to understand how the illness was causing damage, I needed to learn how to manage the symptoms I was experiencing, and I had to make a decision about how I was going to treat it. Going beyond that was just freaking me out. So be selective in what you read. Give yourself time to absorb the information in small doses. And consult only the most reputable sources.

Make choosing a treatment your number one priority

I was surprised by how much responsibility I was given for picking my course of treatment. I was expecting my neurologist to say, “This is what you have and this is what you’re going to take.” But after giving me a brief synopsis of the illness, he gave me a list of the available medications and the web address for the MS Society, and told me to research my treatment options. It seemed like too much responsibility at the time – although there were only four drugs to choose from – but it forced me to look closely at their individual side effects and safety ratings. Your neurologist may ask you to do the same, and it’s important to get right on it. While it’s difficult to weigh the pros and cons – especially now that oral therapies are available – it’s not a choice you can afford to put off. Neurological damage occurs very early in MS, and the disease can progress without any clinical signs. So don’t sit back and wait. Hit it early and hit it hard.

Don’t let a fear of needles scare you off

When I was diagnosed with MS, injectable medications were the only available treatments – and that came as quite a shock. I honestly didn’t think I’d be able to do it. The drug company sent me a video with my needle kit that showed people happily doing their injections, and I thought: That’s ridiculous! It will never be that way for me! And it was very difficult in the beginning. Even with an auto-inject device that hid the needle, it would often take me several minutes to summon up the courage to press the button to release the plunger. But now, after more than a decade of doing it, it actually has become quite routine. Honestly! I’m not saying that I enjoy doing it, or that I don’t find it inconvenient at times, but it’s not as bad as I imagined. In fact, I’ve grown so accustomed to it that I don’t think I’ll switch to one of the new oral therapies. So, in weighing the decision between needles and pills, don’t be put off by the injections. Choose your medication on the basis of its relative safety and effectiveness.

Commit to the treatment you’ve chosen

I’ve found the hardest thing about taking Copaxone – the drug I chose – isn’t injecting the medication. It’s sticking to the program. In the beginning, I expected that a disease-modifying therapy would make me feel better. But that’s not what these medications do. They’re not designed to alleviate the symptoms of MS, but to alter the course of the disease. Consequently, you don’t feel any benefit from taking them, and you start to question if they’re actually working. There have been many times over the last few years when I’ve been tempted to go off my medication completely to see how I’d feel without it. But what if it’s the reason I’m doing so well? It just seems like too much of a gamble for me. And so, for the time being, I’m staying committed – and I think that’s the key to any long-term strategy for managing this disease. Whether you opt for a drug therapy or choose to treat your MS naturally, you have to be disciplined and consistent. None of these methods will do anything for you, if you don’t follow the plan.

Adopt a healthy lifestyle 

Disease-modifying therapies aren’t for everyone. Some people believe in a more natural approach or don’t respond well to medication. But everyone living with this illness can benefit from making healthy lifestyle changes. If you smoke, stop. If you eat a lot of crap, make some better choices. And if you’re out of shape, get moving. All of these behaviors will strengthen your ability to cope with your MS and help you to achieve a better outcome. On the subjects of diet and exercise, I have found two books especially helpful: Overcoming Multiple Sclerosis by Dr. George Jelinek and The Wahls Protocol by Dr. Terry Wahls. Both of these physicians have successfully managed their own MS using natural methods – but they don’t discount the value of disease-modifying therapies. Like me, they believe that when it comes to MS, you have to do everything you can to slow it down or stop it in its tracks.

Expose yourself to sunlight and take Vitamin D

One lifestyle factor receiving a lot of attention is the role of vitamin D in MS. Studies have shown that higher blood levels of this vitamin may prevent the illness from developing, and there’s some evidence to suggest that taking vitamin D may reduce disease activity in those already diagnosed. I’ve increased the amount I’m taking to 4,000 IU daily, and the results have been remarkable. I’m experiencing less pain, my thinking is sharper and my sleep has dramatically improved. But here’s a note of caution: vitamin D can be toxic, if you take too much. At 4,000 IU, I’m at the upper limit of what the U.S. Food and Nutrition Board considers safe as a daily intake, though the Vitamin D Council pegs the tolerable level at 10,000 IU. I am trying to achieve a blood concentration of 25(OH)D at the higher end of the 40-80 nanogram/ml (or 100-200 nanomoles/litre) range considered optimal by the Vitamin D Council. And I will have my blood tested regularly to ensure that I haven’t exceeded what is safe.

Drink lots of water

One of the speakers at an MS patient education session I attended soon after my diagnosis recommended this, and I remember thinking at the time: “Yeah, right. As if that’s really going to help.” I just couldn’t see how that could possibly make any difference in managing the effects of this disease. But believe me, it does. I find that when I make a conscious effort to drink enough fluid every day, I feel less fatigued and my cognitive functioning improves. It may seem counter-intuitive to those of you who are experiencing bladder problems to drink more fluids when you’re already going to the bathroom all the time. But if you’re careful about when you consume your liquids (e.g., not immediately before you’re going out or heading to bed), it shouldn’t exacerbate your bladder symptoms too much. How much fluid should you be drinking? Traditionally, 6-8 glasses per day have been recommended, but some experts now say we should aim to consume half our body weight each day in ounces of water. I’ve never managed to reach either target, to be honest, but the more I drink, the better I feel.

Exercise as much as you can

I once told a healthy friend of mine that I was really tired, and she immediately asked me, “Are you getting enough exercise?” That ticked me off at the time, because I felt she was placing the blame for how I was feeling on me. But it probably also rubbed me the wrong way because I KNEW what she was saying was true. I WOULD feel better if I exercised more – I just couldn’t summon the energy to do it. It’s a vicious cycle for anyone living with MS fatigue – the more tired you feel, the less you move; and the less you move, the more tired you feel. But this is one lifestyle change where even the smallest incremental addition in activity can be beneficial – as I discovered recently when I finally made it to the pool. It has taken me months to build up the strength and endurance to swim a fraction of the distance I used to, but the energy payoff for making the effort has been huge. So, do what you can – as often as you can – and trust me, you’ll really feel a difference. The stronger and fitter you are, the better you’ll manage. Use it or lose it. It’s as simple as that.

Keep track of your MS and how you manage it

When you’re using so many different strategies to manage your MS, it’s sometimes hard to identify which ones are helping you the most. So, it’s a good idea to write down what you’ve tried, along with the results. This enables you to make adjustments to your diet or tweak your exercise plan. And it can help you to assess how you’re doing on your medication and report any adverse side effects. Having a detailed chronology of your disease progression can be indispensable too. Physicians and other specialists will ask you questions about your medical history. They will base their assessment of how you’re managing on your progress reports. And they will make decisions relating to your care based on the details you share. The more precise you can be in your answers, the more helpful you will be. So don’t rely on your MS-battered brain to remember everything. Create a folder, download an app or buy yourself a journal and keep all of the details relating to your illness in one place. Even if you never have to refer back to it, you’ll have the comfort of knowing that record is there.

Think before you disclose

Only you can decide who you’re going to share the news of your diagnosis with and when. If your problems are obvious, you may feel compelled to explain them right way. If they’re not, you can wait until your ready. Take the time to consider how disclosure might affect you – especially in the workplace. While it may be necessary to share some information to secure the accommodations you need, doing so could change the way you’re regarded by your colleagues and compromise your career advancement. And once it’s out of the bag, it’s impossible to take back. I lost an ongoing freelance assignment when I disclosed that I’d been hospitalized for depression – and afterwards, I realized I didn’t really need to be that forthright and specific. I could have explained my absence by simply saying I’d been having some problems with my health. So, on the job, I’d advise you to be cautious and only tell your colleagues what they need to know. Always act in your own self-interest, and carefully weigh the pros and cons.

I’m sure you can think of other things you’d like to know – or wish you had known when you were newly diagnosed. Any questions or tips you’d like to share?

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