This has been playing on my mind for some time but really only hit home yesterday when I received an impromptu invite to go ‘up north’ on an overnight road trip with a friend.
I have had M.E now for around 6 years (diagnosed) and slowly but surely it has taken control of my life. I am not able to be as mobile as before, or on the go as much, and I do spend a lot of time in my pj’s not because I’m lazy but because there are days where I will end up back in bed or I just haven’t the energy at all to get in the bath or shower. I do use a walking stick now when I go out as it gives me stability when walking due to the knife stabbing pain I have in my ankle joints 24 hours a day, and my calf muscle feels like it will rip with every step I take. Therefore, the stick is a helpful reassurance for me that I will not lose my balance or fall over which would just be the most embarassing thing for me! On longer days out I will choose to use a wheelchair due to the walking involved ( if we go to a theme park, or when we are on holiday as it saves me spending the next day in bed due to any walking I may do). I HATE having to use both and fought against them for a very long time before I realised that they were actually a benefit to me. When I have got something to get out for I will adjust my days and rest up beforehand and plan nothing for the day after so I can stay in bed if it’s necessary.
Over time I have seen so called friends fall by the wayside, and invites to nights out or weekends away or days up in London etc become non existent. These so called friends have taken it upon themselves to decide for me that I would not be able to go on these outings. Let’s face it who wants to be stuck with someone with a stick when they have gone out boogying for the night! I have become ‘a hindrance’, a problem, even a disadvantage for them.
What they have failed to consider is on a night out I would never expect someone to have the ‘issue’ of keeping me company at the table while everyone else is on the dance floor. I would actually be very happy to keep an eye on the drinks and handbags with the bonus of having a few minutes here and there boogying on the dance floor ( without my stick) over the evening out. I would still enjoy the night, get drunk as normal, and have fun with friends who are also out having fun. Yes I would be frustrated that I couldn’t be on the dance floor all night but those are my frustrations to deal with, not theirs.
Last night I had an invite from a friend who I do not see very often but am in contact via text and Whatsapp virtually everyday amongst a group of girls who are fundamentally mad as hatters but just brilliant, fun company. I was not left out of her 40th birthday celebrations a few years ago when we all met up in London for a great and fast river boat adventure on the Thames before a bit of a pub crawl and dinner as well. There was a fair bit of walking involved and I popped my pain medications all day long, had a brilliant time and then spend the next day or two in bed, but it was bloody worth it. This friend is organising a road trip up to help support another friend as she opens her own interior designs showroom. She is doing the driving and and she also offered me her bed if we crash on someone’s floor. At no point did she leave me out of the group ( she didn’t have to include me and I would not have been none the wiser), it was just an instant shout out to see who would be around for an overnight jaunt. I am excited to have something organised, sad as that may sound, but even more happy that she did not discount me by making the decision that I would not be able to manage it.
So, my question is why is everyone else making the decision on my behalf to leave me out? I am a sociable person, I love a good laugh, I have no problem making a fool of myself, I love to have a drink with company and can get rat arsed the same as everyone else ( there is no law yet about being drunk in charge of a walking stick!).
It makes me wonder then what people see when they look at me. What do you see?