This month’s guest blog is a tribute to Jannine’s husband and to all the carers in the Lyme disease community who support sufferers during their darkest days. It is important to recognise and appreciate what the carers of Lyme disease patients go through in the maze of this complicated illness as well the changing dynamics of relationships during periods of illness and recovery.
When I was really sick, too sick to even consider that I might begin to recover, you were reading up on Lyme and other potential bacteria to try and figure out the best way to help me. You’d sit at your desk watching videos of doctors around the world when you should have been working or sleeping.
You argued with doctors on my behalf, you held me, fed me, showered me, caught me when I fell, cared for our children, and became more knowledgeable on Lyme than anyone I know. You helped me begin to get well. I can never thank you enough for all that you did for me and for us. The time, effort and money spent showed me your commitment to getting every bit of me back that was possible.
You did so well and I am so proud of you. You found answers and we developed a plan that worked. As my strength grew, I joined you in all the research and we have been able to share the pleasures and responsibilities of all aspects of our life as we did before. But we both know that when the bad days come, I am once again, entirely dependent on you. I know it is hard for you and you don’t hide it well. I always know you love me though, and we both know it will pass – until the next time.
I have pushed myself hard to get to this point. The effort required day to day, just to do simple things is immense. On bad days, it’s impossible. But I still try. When the pain hits me, it stays for days. Still, I give my all. You are always getting my best. No less than you deserve. I look after you too.
We never thought I’d recover to the extent that I have. You are as grateful for what recovery I have had as I am. I’m back to work part time, loving being your wife and enjoying raising our children together again. We didn’t dare hope to come this far. I couldn’t have done it without you. We have been a formidable team.
But here is where it gets tricky. With any level of recovery, comes the returning of dreams, ambitions and aspirations. I have always been a bright spark. Even during this ordeal, Lyme could only hamper my mind. It couldn’t stop my creativeness and my innovation. It didn’t change who I am. All the things that made you love me in the first place are still there. With every passing day, even when I can hardly move, I find myself striving towards my ambitions.
I know it’s hard for you. If I’m pushing too hard, when I fall backwards, it’s you who has to catch me. I understand completely why you want me to keep my life small and only focus on you, us and our family. But then there is me. I grieve for so many parts of myself that are forever lost. I’m sure you do too. But what remains, and what is yet to grow is still there. I really do need to nurture it. That grit and determination to do more and be more is what made the recovery I have had possible. I can’t just switch it off now and accept my own wants and wishes are out of my reach. I need to grow babe. I know you want to wrap me in cotton wool and keep me safe. I know you’d rather I saved my strength for you and the children. But remember why you fell in love with me? ‘You only remember what you do’ right? I’m a doer. Always have been. Always will be.
I know that striving means I will fall. I promise to walk rather than run. I promise that you and the children will always come first. But I need to risk falling or I will be lost. Please say you’ll catch me?