Events terrify me these days. They terrify me not because I am socially awkward, though I can be slightly awkward at times because My Myeloma led to my almost sobriety. Events terrify me because they come with so much baggage. The baggage usually comes from my puny brain, and mostly stems from a belief I have that people, that’s right the broad brush stroke of people, do not full understand myeloma and think that it and by connection, me, are a pain in one’s arse.
Will my energy last? Will somebody who does not know about myeloma, or is just plain ignorant, put me in some sort of headlock and yank my neck down? Will a drunk person bash into my back causing it to fracture? Will my back fracture by itself? Will I cause a scene? Will I spend the entire time wanting and needing my bed? Will I have any fun at all? Will people understand that I cannot have fun like I used to? How will I get to my bed? What will happen if I have bowel issues?
Three or four or all of these thoughts tend to pass through my head prior to any scheduled event. They did prior to my relapse, so in the time hence, said fears have only increased.
There are times when I cannot go to events. It has taken nearly two years for me to fully admit this to myself, but it is the sad truth. There are just some events where the value of pain and fatigue crush the chance of whatever fun I may have, and in turn, ever so occasionally, I will let people down by my absence. And yes, I value myself enough to believe that my absence would feature on people’s radar. It’s never an excuse.
A few weeks ago, 12 days ago to be precise, I had to attend an event. Not just any event, a wedding. Not a wedding located in taxi distance from my flat, a wedding near Halifax, Yorkshire. Due to some well documented issues with my back and the acceptance mentioned in the paragraph above, I was unable to attend the hen do.
I have been to a wedding with myeloma in my body. I have also declined two other wedding invitations because the myeloma forbid it. At the wedding I attended, I was a bridesmaid, but there was no fear attached to that event because I was surrounded by a family who know too much about myeloma, so I knew that my limitations had been thought of. My family was also invited to said wedding, so they were around in the evening to mind me. Mind me they did, but not before a drunken fool made my spine go into spasm. The wedding was also located a mere 8 miles from my second bed, which came in handy when I needed to lie down.
Anyway, I digress, back to the wedding in Halifax, away from these comforts. I was advised by a Medically Trained Person not to attend. It was some advice that I paid absolutely no attention to at all. Instead, I set my mind to attending, and put a personal delivery plan into motion, to ensure my success. Sod the bride and groom, it became about me getting through the day. Well, it became a little bit about that, it was still their special day.
I had a week of resting to preserve energy and one day of not leaving the flat at all, lying flat, on the wedding eve. I changed the days I was supposed to take my steroids to avoid any chance of a crash, and I also used those bastards to assist with my staying power (something I did as a bridesmaid too). I also took cereal bars, lots and lots of cereal bars and lollipops, should I, at any time feel like I was about to crash. And still, there continued to be some mild fretting over my usual event related insecurities.
The point of this blog is to say that all that worry, all my worry was redundant. I might even go as far as to say that it was unnecessary. I have long worried that my friends do not understand myeloma and that within that, they do not have the patience for it. The patience for me. It is a long running theme in my counselling sessions. The wedding was on a Saturday and by the Sunday night I had this strange feeling of love and gratitude in my stomach. Almost shamefully, I was beyond pleasantly surprised.
There was a group of about 15 people at the wedding, who I felt were on hand to make my life easier. Actually, my description is incorrect, because I did not feel like me having myeloma was a big deal or a chore or a nuisance (apart from when it came to getting to the car at 01:00hrs, and even then, I was assured that I was none of these things). Some how, it subtly blended into the background, bar my profuse sweating, and I was able to last the entire day just like them.
If you are wondering what the hell I am going on about, let me enlighten you.
• The day before the wedding, a friend came round to paint my toenails because I cannot.
• I did not need to think about any mode of transport, I was driven to and from Halifax riding shot gun.I was also driven to and from the wedding venues, totalling four journeys, with four different sets of people.
• I was allocated a place to lie down, should I (and I did) need it during the day.
• A friend noticed my profuse sweating, and gave me a cooling wipe.
• I was given a means to return to my hotel at any time, should I (and I did not) need it.
• A friend convinced a stranger to drive up a long steep hill at 01:30hrs in a pick up truck to collect me because my lift to the hotel could not get up the hill and the booked taxi refused to.
• The bride kindly excused me from my pre wedding commitment to make jam, because she knew I would struggle to stand and bend at my hob.
So you see, the moral of the story is this: My Support Network do get it, it is not just a select few who understand my plight, and when done correctly, I can pluck a good 12 hours worth of energy from somewhere. Oh, and my friends do sometimes make me feel warm and gooey inside. And I looked nice.
EJB x
P.S. I slept for 14.5 hours the day after the wedding. It was grand.
