Living with Guillain-Barré Syndrome (GBS)
This blog is all about living with Guillain-Barré Syndrome (GBS), coping with residuals, and adapting to any changes to your life. If you want to know more about what happens earlier in the GBS journey then check out our other blogs in this GBS series such as what it is, the symptoms you should look out for, how it is diagnosed, the treatment you may receive, and what might happen in rehabilitation.
Looking Forward
For many people, life after GBS can be very similar to life before GBS. Most people will make a good recovery, and even those who have some residual symptoms will return to living life how they always have. Hopefully, if you were working before GBS, you can return to work after you have recovered, or your employer will help you return to work on a part time basis, or in a modified role if needed. If you were retired, or not working, hopefully you can return to doing what you did before, with some minor adjustments. For those people with residual symptoms, you may need to adjust what you do, and how you live your life while residuals remain.
Living with Residuals
Some people who have had GBS are left with residual symptoms. These can range from fatigue and brain frog, to pain, to tingles in the hands and feet. These can be more severe for some people than others, and their impact can change depending on a range of variables including stress, temperature, and health. Learning about your residuals, how they impact you, and how you can manage them will be really important. It may be a good idea to keep a journal about your residuals, how and when they manifest and what worked and didn’t work in managing them. While they may impact on your life, most people find ways to live with any residual symptoms. For the few people with severe long-term residuals, you may need more ongoing support from health or social care professionals.
Adaptation
For many people, learning to adapt to their residuals seems to be the best way of living long term with their impacts. This can include understanding new feelings and how they impact on you. For instance, some people have pain or numbness in their feet which means they can’t feel the floor properly. Learning to understand these new feelings can help with mobility and balance. Other people who have problems with fatigue and brain fog can track what time of day this is likely to be worse, and adapt work time or what activities they do at certain times to compensate. It’s all about understanding and adapting to a new (even if only temporary) reality.
Concerns over reoccurrence/relapse
One of the biggest concerns for people who have GBS is that it can come back either by getting it again, or symptoms relapsing. Why the impact of residuals may fluctuate, with GBS there shouldn’t be a relapse. This is because GBS is an acute condition, meaning they happen suddenly and for a short time. And while it isn’t impossible to get GBS more than once, it is fortunately very very rare for this to happen. As a result, GBS shouldn’t come back. However, the anxiety can remain, and if you are worried about this you should seek support. GAIN can help you with this.
Ongoing GBS Support
GAIN is here to support people and families impacted by GBS, offering information, advice, and guidance; providing practical support where it is needed; funding and undertaking research; and raising awareness. If you’re looking for support, to have a chat or ask questions, why not join our monthly Get Togethers or sign up for our GBS Newsletter.
If you want to know more then you can read our blog series on GBS, or reach out to us, we are more than happy to support.
