Help, is not such a simple word when you really think about it. Often Stephen and I are asked by people if there is anything they can do to help. For us, we can benefit from help in a lot of ways –to answer the question of what you can do to help I’ve made a list and organized it into three categories. I’ll try to keep it short and to-the-point:
I’ve learnt a valuable lesson in life – if you aren’t able to help yourself, you aren’t able to fully help others. The best thing you can do is to educate yourself.
Learn about tick prevention and proper tick removal and what to do if you’ve been bitten. There are a lot of resources out there that you can read:
CanLyme does not recommend the following for tick removal:
Burning the tick off with a match or cigarette lighter,“Suffocating” the tick with petroleum jelly or hot oil,Gripping the tick with thumb and forefinger and tugging at it.
There are ‘tick removal kicks’ you can purchase online or get from your local health unit, it is really important that the tick is brought in to be identified.
The role of our public health units is to measure and evaluate risk for Lyme Disease. You can bring ticks to your local health unit office to have them identified to help; this assists with surveillance programs. This data allows our public health officials to determine if there is a rise in Lyme carrying ticks in our area. Ticks are being carried from region to region via a host, and most people typically think of deer as the common host but ticks can also be transported on rodents and birds. As the weather changes, migratory patterns change and ticks are becoming more common.
Our Government is holding a conference in May (which is also Lyme Disease Awareness Month) to develop a Federal Framework on Lyme. Simply put, our current diagnosis and treatment guidelines just aren’t effective, especially when it comes to Late Stage Lyme Disease (i.e. someone like myself).
Change occurs when there is a demand for it; talk to your local MP or MPP about this issue. In our area Sarah Campbell is our local MPP; my husband and sister-in-law have contacted her office to schedule an appointment and are awaiting a response. Please make your voice heard. If you would like more information on the Federal Framework for Lyme, here is a link:http://healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/lyme/federal-framework-conference-cadre-federal/index-eng.php
For those interested in the difference between early localized, early disseminated and late stage Lyme Disease…check out this page from our Government:
If you click on this link and read through it, you’ll note that although they’ve identified these three stages of Lyme, there are only treatment guidelines for the first stage. This is why we have a problem getting treatment for Lyme Disease in Canada. Finally, to help others we need to continue to create awareness. Please share this information, every post I make about Lyme is free to be shared and I really appreciate it when you do.
It needs to be said first that we appreciate all the offers to help more than you realize. Every person who has reached out has touched our hearts and for that we thank you.
Some of the things you can do to help are:
1. Learn about Lyme Disease. Explaining my illness can be tiresome, so one of the best things you can do is learn about it. There are so many great sources of information online.
http://www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/lyme/index-eng.php (Be sure to click on the link for health professionals as well for even more info)
Treating Late Stage Lyme Disease isn’t simple or quick. My recovery will likely take one – to – two years.
(Also make sure to click on “chronic lyme disease” for more info as well)
My Lyme Literate Doctor (LLMD) is Dr. Jemsek, this is from his website and is a brief outline of Lyme and its treatment:
(If you want to learn even more, there is also a ‘detailed’ section on Lyme Disease)
I’ve also mentioned the documentary “Under Our Skin” in my last post. This is hands-down my favourite thing to recommend as you’ll learn about everything I’ve just discussed. You’ll begin to get a glimpse into treatment as well as start to understand why it isn’t a simple recovery. You can rent or download it on iTunes and it is also on the TV-android boxes. If I had to ask for you to do one thing, it would be to watch this documentary.
2. Be patient with me. The most simple thing, such as picking up my cell phone to respond to a text can be incredibly difficult some days. I wish I could answer every email, message and text immediately, but that isn’t realistic for me. It might take a while for me to respond; please be patient.
3. Be sympathetic. I appreciate every invite that I receive but most days I am not able to go far from bed; and when I do – it takes every ounce of energy I have. I want to make it clear that I do not feel sorry for myself; I don’t wonder “why me” or find myself confused because I didn’t “deserve this”. This isn’t a punishment, it is a huge life lesson with so many smaller lessons built into it… and I am grateful for it.
Please realize, without feeling sorry for me, that my life is on hold at the moment. Not everything, I still enjoy so many things in life, but what you may think is a simple outing to a lunch date, to watch a movie, or go to an event – is not simple for me. This might sound silly, but unless you’ve experienced something that has left you bed-ridden than I simply ask that you be sympathetic to this.
This article, “This Is What Lyme Disease Feels Like” is incredibly fitting. It is worded very well and describes everything I struggle to say in such a short post.
I’ve always had the ability to talk a lot; those who know me well aren’t a stranger to this. My papa nicknamed me “chatterbox” from a really young age for a reason.
I hope you’ve found this informative, helpful and that it wasn’t too long.