TIPS FOR A POSITIVE FUTURE
There is a lot that we can all do to secure a more positive future. Here we set out some ideas to get you started and more to take you on along your journey.
At peace with McArdle’s
We have a leaflet on this subject for you to share with others who can assist you with your mental well-being. You can access the leaflet here on our Publications page.
FINDING ALL THE SUPPORT YOU NEED
YOUR FRIENDS SUPPORT YOU
Friends will be interested and support you once you have explained.
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When you tell your friends about your McArdle’s there is likely to be a positive response.
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There is a useful IamGSD “At Home” leaflet to help you tell them. And videos on YouTube.
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Once your friends understand, they will better prepared to support you.
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They’ll be happy to go slow, or take a break and not mention it.
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They will watch out for you and step in to help.
YOU FIND PEOPLE WHO UNDERSTAND
There are on-line groups where you can ask questions and share your experiences.
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You can find a patient support group, such as IamGSD.
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You will find there is a great deal of information available.
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You will learn helpful tips from others who have practiced management strategies.
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For the first time you can chat online to others who have McArdle’s.
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They are people who know what you deal with every day, who understand.
YOU CAN MEET IN PERSON
Make friends with others who understand, at conferences and courses like this one.
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You can attend a workshop or conference and meet in person others with McArdle’s.
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Your stories and theirs are remarkably similar.
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You might even join in with a walking course.
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On a course you are with other McArdle-ites, 24/7.
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You can make friends for a lifetime.
TEACHERS AND EMPLOYERS GET TO UNDERSTAND
Although an invisible disease, with explan-ation, teachers understand and adapt.
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You can share with your teachers using the leaflet “At School with McArdle’s”.
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Teachers and school staff then better understand your needs.
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You can share with your employer using the leaflet “At Work with McArdle’s”.
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Adjustments can often be made to enable you to play your part in the team.
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You feel great to be understood and supported.
COMING TO ACCEPTANCE
YOU FOCUS ON WHAT YOU CAN DO
McArdle-ites explain some of how they manage.
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It’s amazing how much you can do, despite 80% of your carbohydrate energy being inaccessible.
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Once you are in “second wind” you can do most aerobic activity.
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Even if at times you go at a bit slower pace than other people.
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You can do intense anaerobic activity in bursts of around 6 seconds.
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Tasks like that, you simply break down into small sections.
MCARDLE’S IS PART OF WHO YOU ARE
Determined McArdle walkers celebrate 6 days to go on the 32 day “Walk over Wales”.
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McArdle’s is a part of you, but it is not all of you.
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Many people with McArdle’s develop a strong character and personality.
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You become very good at planning ahead.
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You are more adaptable and you tend to “stick-with-it”.
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As a McArdle person you may get to like a challenge.
MCARDLE’S CAN BE MANAGED
A healthy diet and plenty of aerobic exercise - the best “treatment” for McArdle’s.
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Many other muscle diseases are debilitating and life-limiting.
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You learn that when properly managed McArdle’s is not progressive nor life-threatening.
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You realise that with proper guidance McArdle’s is manageable.
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You need to get plenty of exercise, eat a healthy diet and keep your weight down.
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All of which is a good idea anyway, for your general good health.
LEARNING ABOUT MCARDLE’S
SECOND-WIND IS NO LONGER A PROBLEM
OK, second-wind is not really THAT fast.
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As you improve fitness, getting into “second-wind” becomes quite easy.
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It’s a very positive feeling and makes activity so much more achievable and enjoyable.
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If less aerobically fit, it can be a struggle, maybe taking as long as 10 minutes.
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Yet the most aerobically fit amongst us can easily enter “second-wind” in under 7 minutes.
MOST ACTIVITIES CAN BE ADJUSTED
Second-wind, adapting, adjusting – you can do almost anything! (Dan on Mt. Shasta.)
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You learn to adapt and adjust almost any activity to make it safe.
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You break down tasks into short sections, or switch between activities using different muscles.
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You do things in a different way to other people...
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Or simply allow a bit more time.
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With some imagination you find that you can do almost anything!
ADAPT RATHER THAN AVOID
Learning to do so much is very rewarding.
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You knew they would cause pain and cramping.
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With your new understanding of the problem...
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You learn ways to adjust and adapt activities.
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You can soon do much more than you could before.
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It is rewarding to be able to do so much without issues.
PUTTING THINGS IN PERSPECTIVE
GETTING THE BIG VIEW
McArdle-ites get the big perspective in the Italian Dolomites.
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Seeing a big landscape by hill walking can help put your troubles into perspective.
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Or seeing a big landscape in some other way, such as at sea.
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You can realise that your muscle issues are a small part of you.
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And you in turn are really a very small part of a very big world.
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There are very many people facing much larger problems.
WE ARE MORE DETERMINED
We can be as determined as anyone else, we just need to do it at our own pace.
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In many ways with McArdle’s you can perform equally with others.
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Sometimes you have to try harder, or stick at something for longer.
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For example, when walking up hill you may need to take three times as long as others.
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This tends to make you more determined.
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Some might say even stubborn – not wanting to give in.
WE FIND WE CAN AVOID PAIN
You learn to manage activity to never have more than mild cramping for a minute.
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Before diagnosis you easily hurt yourself, not understanding what was going on.
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You now only get mild cramping, lasting no more than a minute.
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Pain becomes the exception, rather than the rule.
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Significant pain only occurs if you make a mistake, or get caught out by adverse external factors.
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You eliminate pain from your day-to-day experience.
LOOKING FOWARD TO THE FUTURE
YOU GAIN FROM YOUR DIAGNOSIS
Helping others on a walking course.
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You concentrate on what you have gained from your diagnosis.
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A better understanding of how to manage your activity.
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A network of friends worldwide who understand you.
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A need for exercise, which benefits your general health as well as your McArdle’s.
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The opportunity to help support others as they get diagnosed.
A SENSE OF ACHIEVEMENT!
Seeng your distance improve is a great encouragement.
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You are encouraged by progress as your aerobic fitness improves.
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You keep a log of your exercise to focus on achievement.
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If you have a treadmill at home, you can do the 12 minute walk test each week.
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Seeing your distance improve will give you a tangible sense of achievement.
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You may even want to start challenging yourself in more ways.
A BUZZ FROM HELPING OTHERS
Understanding enough to climb a mountain safely.
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It’s a great feeling when we can pass on the benefit of our experience and knowledge to others – patients and doctors.
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As an ultra-rare disease, very few doctors understand McArdle’s.
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Even fewer have first hand experience of it.
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People with McArdle’s are in a special position to become very knowledgeable about it.
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That enables us to help others.