MS can take away a lot of the things you love in life. When you’re diagnosed you go through a grieving process for your ‘old’ life; you have to learn to make adjustments and somehow embrace the ‘new’ life that MS has forced upon you. I’ve mentioned before that MS has taken away my love of walking, cycling and smashing it at the gym. It has even ruined ironing for me (see my post, ‘For The Love Of Ironing’). It has robbed me of my bounce and, believe me, I used to be a VERY bouncy person – leap-frogging all over the place, mounting stairs 2 at a time and generally jumping about A LOT. What I am most baffled by, however, is the impact my MS has had on 3 of my most favourite hobbies – reading, cinemagoing and theatregoing. Three pastimes that involve sitting down and relaxing. How can such chilled out activities be affected in any way by a condition that often FORCES you to sit down and relax? Well, while none of these involve much physical exertion, they do require some level of mental exertion – reading in particular is EXHAUSTING, as is writing for that matter! When fatigue strikes just lifting a book and keeping it raised is challenging enough, but when you add optic neuritis to the fray, you’ve no chance.
So, what of cinemagoing? Surely you can simply rock up, sit down and enjoy? Absolutely, unless you suffer with restless legs or extreme spasticity that is made worse by sitting still for any length of time. Narrow leg-room is an MSers worst nightmare; as is the need to remain still… Known for my punctuality, being late does not sit well with me. However, if I go to the cinema these days I aim to avoid the (painful) 30 minutes of adverts and trailers – my legs seriously have no chance when you add that half hour onto an already lengthy film.
And going to the theatre? I am in an incredibly privileged position when it comes to theatre going, it is one of the perks of my job. Before I had MS I was in that auditorium almost every week experiencing the most awe-inspiring work that the theatrical world had to offer. I discovered a love of ballet, opera, quirky modern dance, all kinds of music, comedians, funny plays, serious plays, mystery plays, musicals and circus – the list goes on. But, that dastardly MS has made all this pathetically challenging. I rarely make it past an interval nowadays. The pain and built-up tension in my legs makes the whole affair somewhat traumatic. Mortifying of all, I find myself longing for shows to end. At my theatre we have an accessible row, reserved for wheelchair users and others with access needs. It has the best view of the stage and is highly sort after. But even sitting there with my legs outstretched I find the experience very uncomfortable. Just the other day I was soaking up a bit of culture with ‘The Scottish Play’, or ‘Macbeth’ for the more daring amongst us. The play had everything you could want from a Shakespeare play, it was moody and menacing, full of gusto and real oomph – why oh why couldn’t my legs just enjoy the show?? I sat there enthralled but in agony. My legs just kept kicking out and tightening up. The poor guy to my left was sandwiched between myself and another twitcher… knowing what he must have paid for those seats I felt awful and resignedly made the decision to abandon ship at the interval. Sorry, Shakespeare.
Right, I’m off for a nap – all this typing and thinking is tipping me over the edge!
7 thoughts on ““Double, Double, Toil and Trouble””
I totally I yearn for my old life I’m 48 and had this horrible
Disease for 14 years and I’ve managed to bring up my two boys who are now 17 and 14 so pretty self liable now luckily! I’m still on my feet my balance definitely getting worse trying to do stretching and Pilates exercise in the house neurologist does not Help I don’t get anything out of my annual visits and trying lots of dietary things cutting out tomatoes and peppers seems to have helped my leg spasms in the night. I can totally relate to your Podcasts keep them coming there are lots of us there we need to beat this disease
PS I’ve noticed all ms groups are in the afternoon I’m still working full time can’t find one ..
Thanks for your comment. Good to hear that you are keen to improve your health through exercise and diet, that surely can’t hurt! Re MS groups – I’m very lucky as there is a group local to me who meet up for various socials during both daytime and evening, sorry you haven’t access to something similar!
I don’t have pain my eyes are fine and I walk to work every day , I keep reading all these scars stories that people have ! Help it’s terrifying
I’ve just joined I have to say I look forward to each post. Recently diganosed this year, it’s a lot to take in and I’m still getting to know my limits and your posts are fab so thank you.
I love reading also, but just lately I’ve just been too tired to pick up my book , it’s so frustrating as I’m so near the end. But I will not beat me, I will finish the book soon can start another one.
Welcome to my blog and thank you for looking forward to reading my posts! Hang in there – an MS diagnosis is a lot to process and it will take a while to come to terms with. Just remember, life is still beautiful and fun and amazing – sure MS makes adds a bit of unwanted colour, but it doesn’t have to mean the end of things : )
I’m loving your blogs – it’s so relevant to me. It’s a different life to ‘before MS’. Everything has to be planned and worked around a sleep. Theatre and cinema can be a nightmare with cramped legs and spasms sending my legs flying ! The worst was last week at the Lowry in Manchester. The Calendar Girls was brilliant but our seats in the front of the circle had less room than a budget airline ! When I came out in the interval the very kind attendant found us an empty box for the second half – bliss!
I don’t like this old me new me thing , I intend to do same things !