One thing over the years of having tricky asthma I have found that support groups and online groups have been invaluable to me. Brittle asthma is very uncommon and not everyone has it so not many people really understand what its like to live with day to day, not knowing how your going to be from day to day. One day you could be fine and have very few symptoms but then next day you feel awful and just getting dressed is a huge achievement!!!
This is where the support network comes into play. I have seen support groups evolve and change back from the days of the very basic Asthma UK message boards before the days of Facebook and some people from there I am still in touch with, it is sad to look bak and see how many of those members from the early days have now died as either a result of asthma or as a result of medications they needed for their asthma. But thankfully many are still around and I am still in touch with.
As time has evolved so has social networking meaning you can have connection with people all over the place. It can be very toxic but for those toxic people there is always a gem out there who you can just relate to. I used to feel ashamed I think would be the right word of being part of support groups but over time I don’t feel that way as many have been really needed. At times when no nurses or Dr’s or friends can answer my questions it is these other people who live with the same or very similar conditions can help me and relate to what I am going through. These sources have been invaluable and really kept me going. The one huge advantage I have found is that I have made connections through this blog and support groups all over the world meaning that when its the middle of the night (and it was when I started write this post) and I can’t sleep that there are others who are awake and there at the end of a message or a post.
One thing I have learnt is that you can get burnt by people who will take advantage and dupe you but they get found out. I have been able to direct a lot of people within the UK to AUKCAR and they can get the same benefits that I do when you are not able to work like you want to or need to take down time but your brain is still wanting to go 100 miles an hour.
Not everyone agrees with support groups and social media but as long as you can keep yourself safe then they can be really special to you and prove to be an invaluable source of information and support when things are rough and you can be support to others offering your advice because we can only offer advice through the hurdles we have had to get over, go around or get knocked down by.