What some people don’t realise is that with M.E, a relapse can be brought on by the smallest of things. At the end of June 2011, my relapse was brought on by Cyndi Lauper and a trip Wagamama’s.
I have loved Wagamama’s ever since the first time Jennifer Anniston took Jennifer Garner and me there when we were 17. I had a Katsu Curry and fell in love with the Japanese noodle bar and ever since then it has become our favourite place to eat. So when Jen Garner and I had tickets to go and see Cyndi Lauper at the Royal Concert Hall, I thought why not start off our date by filling up on Ramen and Chicken Chilli Men. When Jennifer came to meet me at the Royal Concert Hall she asked a question that I probably should have said yes to, “Will we get a Taxi to Waga’s?” But foolishly I said no. Why? Because in Glasgow not all black cab drivers are polite and willing to help, I didn’t want to get in a taxi and have to listen to the taxi driver moan about taking us 300 metres down the street and then charge us a small fortune for it. So instead I insisted that we walk. I hobbled down the street with Jen there to catch me if I fell and after what felt like a decade we finally reached our food heaven destination. By this point I wasn’t feeling so bad, so when we had filled our stomachs and I was faced with the options of walking or taking a taxi, again I made the totally wrong decision. But hey, we learn from our mistakes don’t we?
After another jaunt we finally reached the Concert Hall and went in and took our seats. Once seated and finally giving my legs a rest, a strange man seated in front came to the attention of Jen and me. I don’t know if it was the fact he sat reading articles about Cyndi in various magazines, or that once he finished reading them, he then took out his digital camera to reveal pictures of himself at Cyndi Lauper concerts throughout the UK, or the fact the he had tickets for two seats but was alone, or his choice of Kappa track suit. Either way we both became slightly concerned for C’s well being. After all John Lennon was killed by a crazy fan, it wasn’t so hard to think that this guy could be Cyndi’s very own Mark Chapman? Concerned for the women’s safety Jen and I came up with a plan. When this man eventually made his move we would lift up one of my sticks each and strike him hard on the back of his head causing him to drop his knife, gun, grenade or whatever weapon he happened to have hidden underneath that navy kappa track suit. After he fell to the ground Jen and I would then perform a citizen’s arrest and keep him in our custody until the authorities came and took his ass to jail. Cyndi would have been so impressed and thankful for our efforts she would then allow us to do the dance from “Romy and Michelles’s High School Reunion” on stage while she sang “Time After Time”, as we did see Mark Chapman’s “True Colours”. It turns out that Mark may not have actually wanted to kill Cyndi. Marry, kidnap or perhaps touch inappropriately, but not kill. So Jen and my services were not needed that night and we were left to enjoy the show.
The next day M.E struck, and it struck hard. The headaches, more severe muscle aches and severe tiredness all severed as a reminder to me that I am sick and no matter how positive a person you are, to wish things to get better just doesn’t work. You have to listen to your body and when it says “yes I am hungry and would love a Wagamamas but I don’t think I can walk all that way” then you don’t walk. You have to work with it instead of working against it. I can’t lie to you and say as soon as I woke up and realised that I wouldn’t be leaving my bed for the next few days that I wasn’t disappointed. In fact disappointment isn’t a strong enough word. I felt like I had taken all the money and every possession my family had, put it all on black and the ball landed on red, leaving me with nothing and having to face the prospect of going home and telling my whole family that we were now going to be living in a card board box. But I had two options; I could wallow in self pity about having this shit illness that stopped me from walking and causes me to spend days in my bed sick or I could do something about it. I chose the latter. I decided to make myself up an activity guide. A point system that would allow me to know when I was doing too much by giving everything I do a certain number of points and having a maximum number of points I would use per day. Every two weeks the number of points I was allowed to use would increase by 1 allowing me to build up what my body could do slowly over time. I then put all this in an email and emailed it to every one of my close friends and family. I wanted them to understand what I could and couldn’t do and give them a better understanding of what it was like to live with this illness, as if I didn’t tell them, how would they ever know? This is what I wrote:
Hope you are all doing grand!
You are probably wondering why I am sending you this random email. Well folks after Jennifer forced me at knife point to walk to Wagamamas the other night, I haven’t really been at my best. Which is code for I feel worse than shit. So I decided to write up an activity guide that would allow me to plan better what I can and can’t do. I have attached this at the bottom of this email to help you all understand why I regularly say I am too tired to do things.
Sam’s Activity Guide
Working on computer for up to 30mins
Reading for up to 30mins
Conversation only for up to 1hr
Watching a mentally taxing film at home (i.e. one you have to concentrate on)
Anything over 20 and up to 40mins in a car (after 40mins increases by 1 point every 20mins)
Preparing a meal taking no longer than 20mins
Cinema or show trip not including travel
Lunching/Dining out not including travel
One way bus journey
Any other outing that lasting 4hours or more
Other points added:
2points added if an activity passes the time 9:30pm
5 points automatically added for disrupted nights sleep
5 points automatically added for a highly emotional or stressful situation
Maximum point usage per day to start with: 10