Finally we get to present our Brain Health policy document to the European Parliament. #PoliticalSpeak #BrainHealth #MSBlog
I had flu about 2 weeks ago and I have been floored with post-viral fatigue. I have never had it this bad before. I have literally found it impossible to get through a working day. I get home each evening and crash. I have spent two weekends in a row prostrate on the couch drifting in and out of sleep and feeling miserable. I have had to limit my exercise to a minimum. I even find walking the dog an effort, which induces a tachycardia. I thought I was the only one affected, but I have found two other people with the same complaint as me; both are men so this must have been a virulent strain of 'man flu'.
Joking aside, if this is how people with MS fatigue feel I now understand why 50% of them are unemployed within 10 years of diagnosis. Working, or trying to work, when you are used to burning the midnight oil and getting by with 4-5 hours sleep a night is not easy. I am so behind in my work that I have no idea when, or if, I will catch-up. Apologies to my colleagues and acquaintances if you are waiting for me to deliver a completed task; I will get to it eventually.
I have had to stay up tonight to try and finish a presentation for a very important meeting we are having with the European Parliament on Tuesday. Gisela Kobelt and myself are finally going to make the case to MEPs for 'early effective treatment in MS'; i.e. we are presenting our 'Brain Health: Time Matters in Multiple Sclerosis' policy to them. I sincerely hope we get some traction with them and that they will help smooth the variation of MS practice across the EU.
If there is anything you want us to discuss with MEPs that is MS-related can you please let me know. Thanks.
Labels: #BrainHealth, #PoliticalSpeak, Brussels, European Union