Mama and I are once again off to Breakspear tomorrow.
How I am feeling about it? I really don't know. I really don't and that is the honest truth. My emotions are so all over the place it is untrue. Deep down all I want are solutions and over-night fixes to my problems but I know that isn't possible. It isn't reality and it isn't how this game works. I am also anxious about the long journey and how I am going to be able to manage. Then also frightened of course. To find out what the next course of action will be. As you all know my health hasn't been great really, to put it bluntly it has been terrible. Maybe, people are now beginning to see how soul-destroying this disease is. Not just because of the fact I can't keep portraying this strong, put together, smiley person because of my pain and symptoms but all the media press is really beginning to go beyond the surface. Instead of early stage Lyme being explained, articles are now going into how the infection if left untreated goes on to cause debilitating and awful symptoms. Which is great because people are being more cautious, educating themselves and becoming more understanding.
Lyme isn't like cancer just yet, where people here the label and instantly panic. That isn't to say it isn't heart-breaking, soul-destroying and life changing.
I find the only way to truly explain Lyme is like being stuck in a torture chamber you can't break free from. Nothing lightens the pain, every day presents new challenges and there is no end to the anxiety of 'what will help to me next?' It is no way to live. We wouldn't wish this hell on anyone. We try to keep fighting and staying positive but some days IT IS JUST ALL TOO MUCH. The brave face slips and the smile cracks. Tear stain our faces and we do lose motivation.
I think it is important to keep my work up even though it is getting tougher. I am struggling to write this. After being up most of the night, my words in my head seem jumbled. For me, I need to be open not just as a diary for myself but so other's can relate. We feel so alone. People really don't understand. I can't take a holiday or magically make myself ok so I can live normally. This disease strips us bare. We have to learn on the job, adapt and accept. Never easy to do. I am trying so hard to hold on to everything, keep myself afloat and stay motivated but it isn't easy. I am tired, beyond exhausted in everyway. I fear that letting go and stepping back will be dangerous because I may never bounce back or come back. However, I know rest is required.
For me, me telling myself I need rest is just me accepting I am lazy and because that is one of my BIGGEST fears I continue to push myself. When others tell me all will be ok and rest is OK. I listen a lot more. I know so many of you will be screaming at your screens now and telling me to rest. Don't worry, I will wrap this post up now. Whatever happens, I just hope I do enough every day to leave my mark.
Whatever happens tomorrow, I am trying to keep an open mind and know by Thursday I truly will be exhausted from the travel and all the information I will have to digest.
Thank you always, for your love and support.