Living with Guillain-Barre Syndrome. How to live with Guillain-Barre Syndrome?

Can you be happy living with Guillain-Barre Syndrome? What do you have to do to be happy with Guillain-Barre Syndrome? Living with Guillain-Barre Syndrome can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Guillain-Barre Syndrome

Living with Guillain-Barre Syndrome

Guillain-Barre Syndrome (GBS) is a rare neurological disorder that affects the peripheral nervous system, leading to muscle weakness and sometimes paralysis. Living with GBS can be challenging, but with proper management and support, individuals can lead fulfilling lives. Here are some important tips and strategies for living with Guillain-Barre Syndrome:

1. Seek Medical Care and Follow Treatment Plan

It is crucial to seek immediate medical attention if you suspect you have GBS symptoms. Early diagnosis and treatment can help prevent complications and improve outcomes. Your healthcare provider will develop a treatment plan tailored to your specific needs, which may include intravenous immunoglobulin therapy, plasma exchange, or other medications. It is essential to follow your treatment plan diligently and attend regular medical check-ups.

2. Build a Support Network

Living with GBS can be emotionally and physically challenging. Building a strong support network of family, friends, and healthcare professionals can provide the necessary emotional support and practical assistance. Joining support groups or online communities can also connect you with others who understand your experiences and can offer valuable advice and encouragement.

3. Engage in Physical Therapy

Physical therapy plays a vital role in managing GBS. A qualified physical therapist can design an exercise program tailored to your abilities and help you regain strength, improve mobility, and prevent muscle stiffness. Regular physical therapy sessions can also help manage pain and enhance overall well-being.

4. Adapt Your Living Environment

Modifying your living environment can significantly improve your quality of life. Consider making changes such as installing grab bars in the bathroom, using mobility aids like walkers or wheelchairs, and rearranging furniture to create a more accessible space. These modifications can enhance your independence and reduce the risk of falls or accidents.

5. Manage Fatigue and Energy Levels

GBS can cause extreme fatigue, which can impact daily activities. It is essential to manage your energy levels effectively. Prioritize tasks, take regular breaks, and listen to your body's signals. Learning to conserve energy and pacing yourself throughout the day can help prevent exhaustion and promote better overall functioning.

6. Practice Self-Care

Self-care is crucial when living with GBS. Take time for activities that bring you joy and relaxation, such as reading, listening to music, practicing mindfulness, or engaging in hobbies. Prioritizing self-care can help reduce stress, improve mental well-being, and enhance your overall quality of life.

7. Communicate with Your Healthcare Team

Open and honest communication with your healthcare team is essential. Regularly discuss any changes in symptoms, concerns, or questions you may have. They can provide guidance, adjust your treatment plan if necessary, and offer valuable advice on managing GBS-related challenges.

8. Stay Informed

Stay informed about Guillain-Barre Syndrome by reading reputable sources, attending educational events, or joining patient advocacy organizations. Understanding your condition and the latest research can empower you to make informed decisions about your health and treatment options.

9. Emotional Well-being

Living with GBS can be emotionally challenging. It is essential to prioritize your emotional well-being. Seek professional counseling or therapy if needed, practice stress management techniques, and engage in activities that promote relaxation and positive emotions. Connecting with others who share similar experiences can also provide emotional support.

10. Maintain a Healthy Lifestyle

Adopting a healthy lifestyle can support your overall well-being. Eat a balanced diet, rich in fruits, vegetables, whole grains, and lean proteins. Stay hydrated, get enough sleep, and avoid smoking or excessive alcohol consumption. These lifestyle choices can help boost your immune system, improve energy levels, and enhance your body's ability to cope with GBS.

Living with Guillain-Barre Syndrome requires patience, resilience, and a proactive approach to managing your health. By following these strategies and seeking appropriate support, you can lead a fulfilling life despite the challenges posed by GBS.

Diseasemaps

Understand the course of the disease so that you can have realistic expectations. GBS stands for 'Getting Better Slowly"! Rather than trying to see improvement day by day, you will see small improvements week by week or month to month. Join support groups on Facebook or in real life to connect and share with other GBS survivors.

Posted Apr 26, 2017 by AM 1211

Most people are left with some residuals. Even pain is better that feeling nothing. You fight through it, and move on. Time helps the memories go away.

Posted Apr 26, 2017 by james ventura 1501

You can live a normal life, and do everything others can do. You need to have a positive outlook. You need to train to be positive, after 17 years I still have symptoms from my Guillain-Barre Syndrome in that I have numbness in my toes and sometime in my hands, I just keep on going sa it does not bother me, I always think that others have it worse and why should I worry about a little numbness.

Posted Apr 27, 2017 by Totta 1181

once you are in the public and home you certainly can be very happy, and if 70-80% improved continue life as you feel confident and are capable doing with out risk to yourself or others. Do not feel sorry for yourself, get on with life and enjoy those you care about and love.

Posted May 9, 2017 by Bob 1650

Strong positive mind set. Support group
And family and friends.

Posted Sep 3, 2017 by James 2825

I had a large support system which was crucial so I wouldn't lose hope. It can be very scary if you dont have people constantly by your side.

Posted Sep 9, 2017 by Barb 1100

You can live a normal life and attitude and support is important. We improve slowly.

I come from a family of medical professionals and they were unfamiliar with GBS and it is hard to relate to no pain.

Since GBS I've been to the ER 2 times and have had difficulty. My appendix was rupturing and they almost sent me home since I was in no pain a specialist came in and decided to do 1 more test.

Posted Sep 9, 2017 by Joe 200

Yes you can be happy living with GBS. However you must keep your mind healthy. If that means seeking help from a professional than do that

Posted Sep 10, 2017 by Connie 2000

You can be very happy with GBS , once you realize the fact that your life and way of life has changed . You must except what has happened and move forward to attain happiness .

Posted Sep 10, 2017 by Rex McKinley 1200

Yes you can be happy. The biggest thing is to realize you may never be totally 100 %

Posted Sep 10, 2017 by Debra 2000

GBS presents many challenges, both physical & emotional. I don't think there is anything you can do to made "happy" living with GBS. Once home, I frequently cried over my loss of functionality & the constant presence of foot-pain when on my feet for long. I fell down in my yard & couldn't get up. I needed a stool to sit in the shower. The sum of my new inabilities was a physical shock. I considered seeing a psychologist for mental health (how to best cope). For me, accepting my condition as my "NEW NORMAL" helped me cope emotionally. My physical capabilities were severely diminished, I couldn't play my favorite sports, or do my favorite activities, for the foreseeable future. I tried very hard NOT to dwell on my condition, took extraordinary steps to put it out of my mind. I distracted myself through reading series of books with a common character that I enjoyed, like the Jack Reacher series by Lee Child, followed by the Jason Bourne series popularized by recent movies. In my experience, time & God's grace heals the nervous system myelin sheath damage done by GBS. Reading books really helped me pass the time constructively while distracted from my condition. Read enough books, pass enough time, gradual healing does take place & some physical abilities are recovered, some pains ease. Time which leads to healing, eventually leads to some degree of satisfaction, possibly even happiness for some who truly get well.

Posted Sep 11, 2017 by Denny 2300

You can be quite happy. Just accept your limitations if any and live your life to its fullest.

Posted Oct 1, 2017 by John 2070

Of course you can be happy after GBS

Posted Oct 28, 2017 by Kath Donaldson 2065

I have been a survivor of Guillain-Barre Syndrome since 2013. I wasted a lot of time sitting feeling depressed and angry and sorry for myself but none of this really made me feel better.

It was when I started working with physical therapy and listening to advice sometimes that I didn’t like.

They got me out of that bed...Correction, I got out of that bed...they gave me motivation along with wanting to be with my kids again.

Posted Sep 8, 2019 by Tara32473 2570

Different answers would need to be given to different sufferers as some are more affected than others. Some are still in wheelchairs and others live in pain but can work.
With that knowledge, this question would need to be answered with that in mind

Posted Sep 9, 2019 by Joe Wojtanowski 2500

I’ve had it 6 times. A positive attitude will get you far in life. Though you may be disabled, and have no quality of life, but a positive attitude will always get you far in life. Be happy your alive, because the alternative is much worse.

Posted Jun 19, 2021 by Joseph 600