Tuesday, 26 March 2013

For Freedom's Sake

I thought it was time for something a little upbeat.

I’ve just come back from a trip to London – yes, I hear you gasp! Me, a Northerner born and bred surviving our glorious capital! Whod’ve thought eh?

This was quite an undertaking for me. I’m by no means at the more severe end of the spectrum with my Fibromyalgia but I’m still presented with challenges. This was the first time I’d done any extensive travelling, dealt with the Tube (my own personal vision of Hell) and a lively gig environment since the condition really sank its teeth in for good and all. I say this for comparative purposes as I presented with symptoms up to two years before diagnosis, but the last six months or so pre-diagnosis were certainly noticeably worse and I’ve remained at much this level since. In short, the trip to London was a prospect accompanied by a potent brew of both terror and excitement.

Why were we taking the risk? Because my favourite band – Austrian power metallers Serenity – were in the UK again, and there’s something of an unspoken promise between the partner in crime and myself that each time they make the trip over we go find them. In short, my inner rabid fan girl was firmly in charge.

Travel was pretty uneventful, so things started well. I’m of a mind to curl up with a book on long trips, and a cup of tea and something to eat at the changeover from coach to train at East Midlands Parkway was enough to see me through, Steven Erikson’s The Crippled God in hand, to London.

Now, the Tube. Why you ask is it my personal vision of Hell? I can appreciate it’s a brilliant transport system and infinitely preferable to the public transport alternatives in place, but it terrifies me nonetheless. We’ve fallen reasonably unlucky in that we’ve often traversed London at peak times in the past so that hasn’t helped. My problem is the complete lack of respect for personal space. Yes, I know it’s logical to get as many people on as possible and I know everyone has somewhere to be – coming from a much smaller city in t’North the pace of London is a little unnerving – but it’s a problem for me with my hypersensitivity. With observation this seems to be triggered by the feeling I can’t move freely – so the more packed the carriage, the more agitated I’ll become.

As the Imperial War Museum is currently shut until the summer for renovation, we decided on the Natural History Museum which I’d never been to before. We walked around for a good five hours and still missed plenty – it certainly needs multiple visits to see and appreciate everything. For me, that’s a big undertaking in itself in terms of activity and thankfully I coped fairly well, although I was in need of a snooze by the time we reached our hotel. I implore anyone who hasn’t been to seize the opportunity should it arise to go – it’s fantastic. 

(Yes, I love Dippy too.)

A minor episode of hyperventilating and general distress resulted from the Tube ride from hotel to venue. Through jostling about I ended up backed into a corner on a busy carriage and couldn’t escape the feeling of being almost-stood-on. I wasn’t even properly bumped into at any point – but every brush past sent agony up my back and through my legs. Not an auspicious start to the evening to be sure.

I got off incredibly lucky with the gig, for which I’m more than thankful having had to leave the last one I ventured to early due to pain and general acting up (Sabaton last November). We found a spot with reasonable space half way back, and someone kindly offered me the spot in front of them so I could see better (sometimes being 5’3” offers small victories – even sympathetic ones count!) so by about half way through proceedings I was two people back from the front but still with plenty of space. I threw caution somewhat to the wind and thoroughly enjoyed myself. Post gig my neck and legs liked me not at all, and they liked me even less when I woke up this morning.

I’ve spent today being unusually sleepy – that means just one thing. Petunia’s taken note of this excess of fun and activity and is going to make me pay.

This brings me around to the point of this post. What constitutes throwing caution to the wind for each of us will differ – different conditions promote different challenges, and all the degrees of severity add to the discrepancy of experiences across the chronically ill community. My point is not to show off how much I managed to do, or the bemoan the fact I knowingly put myself in the position for a pretty inescapable flare up and backlash.

My point is that there are some things that are too important to miss, some situations which cannot be lightly thrown aside to avoid pain further down the road.

Sometimes, kicking the rule book is for a good cause.

Chronic illnesses are so easy to be overwhelmed by, because by their very nature they are incurable and cannot be escaped. We all hope for a cure in our lifetimes, but at the moment it’s a faint and far off possibility in most cases. It really is a very easy thing to “become” your illness, and to let it take over your life.

I don’t think any of us realistically expect to live the life we did when we were healthy. Nobody expects to not have new considerations to think of and to have to plan more carefully. The reality is that tough decisions will have to be made for the good of one’s health, and some of them could be very upsetting indeed.

Personally I know I live in a very careful manner presently, far more so than I ever did before contracting Fibromyalgia and IC. I religiously exercise even when all I want to do is crawl back to bed (I’ve given myself tomorrow off – it’s a gift, so it’s OK!) and I have to plan weeks and months into the future in terms of events which fall close together. Overdoing it is a harsh and often incredibly painful and distressing lesson , certainly not one to be oft repeated.

This is my way of fighting back. Taking the chance for the things I love even though I know the consequences. We all have certain things that enrich our lives and we wouldn't be the people we are without them. Every person has something which stirs their emotions – and there is nothing at all wrong in that. It’s something to embrace and enjoy, not to be ashamed of.

I know that either tomorrow or the day after, I’ll be in agony. I will not be able to leave the flat and I’ll find even the most trivial of tasks difficult. However I’ll find all my warm clothes, don the heat therapy gloves, surgically attach myself to the kettle and settle under a duvet for the day with a book and my cat. I won’t enjoy it, but it’ll be all right in the end.

I willingly accept this – because in my own way I’ve taken yet another step towards victory. This is my method of preventing my succumbing to despair, of stopping the conditions and their limitations from taking over my life. I couldn't fight it every day, so I store up rare occasions like this one.

The things you love are too important to not fight for them in whatever way possible. Some things will be impossible and have to be given up entirely – I’ve made a post about giving up skiing and horse riding, things I miss dreadfully and always hoped to return to. Some others however sit that fine line between being that little bit too much and being just about acceptable on a good day.  

Various people have sent me some truly lovely messages about finding this blog inspiring - if you take nothing else away, I want to give this one idea to you: take the chance.

Whatever your illness does, however much you hate it, call it names and rail against it, it is not who you are. It is not the sole definition of you or your life - merely another facet making up the unique person you are. We all occasionally have to take the plunge for something we love to reinforce that fact. 

You are strong. You can do it.

In closing, I'll just say that Serenity are my favourite band. They aren’t on our shores very often, but it means that each time they are here will be one of my hoarded and precious rare occasions.  This time was the first and proves it possible. I’ve done it once, so I can do it again.

I kicked the rule book and fought the good fight. Most importantly though, I loved every minute.

(Answers on a post card as to which of us is happiest - with Clémentine Delauney and Georg Neurhauser of Serenity)


  1. Great post, lovely :)

    When I last went to see my dermatology nurse she said I deserve some happiness and I should just go ahead and do stuff. She's right of course, like you are in this. Some things just can't be missed. I suppose at the end of the day it just depends what frame of mind you're in at the time.

    Take this weekend for example... I could see my skin was beginning to get just a tiny bit better so took the opportunity to do more than I normally would, and of course today I'm suffering for it, and for that reason I am currently loathing my illness. I didn't even do anything particularly mind blowing... just carried out some errands that needed doing and BAM. Punishment. It really does suck that even when you haven't stored up for a good day, and just take a chance because you notice you've been a bit better that it just all comes flooding back.

    I think I need something substantial to look forward to. Can't be having all these little let downs just for fulfilling normal everyday duties :p

  2. LOVE this blog. So true, so heartfelt and SO needed for people who are falling into the abyss of chronic illness. YAY you!

  3. Great blog post. I know what you mean about some things being important to do for your mental health, even though you will pay for it physically afterwards. I would love to be able to go to a gig with my partner, but as he likes prog rock and I tend to react to loud noise by spasaming with pain it's not such a good idea. Glad you managed to get to and enjoy your gig. x