My Small World 2.0

A few months ago (well, quite a few more months than that to be honest now), I wrote an angry post. It wasn't mock anger, it was white hot at the time.

I was furious at the world for being so inaccessible to my fellow MSers and me. I moaned about how I can't get to places. I practically shouted at those who didn't take my disability into account in every aspect of their planning. 

I look back at it now and it upsets me to read it. I was clearly having a very bad few months, as it is definitely no one's fault. I read it and I can feel the pain of it (please bear with me).

I almost posted version 1.0. Many times. But something always held me back. For months. It was the happy part of me, I see that now. Don't get me wrong, sometimes I still feel such anger and upset at my situation I can't breathe. This is not limited to me by far. We all have hurt. We all have anger. And me dumping mine onto others to feel better would have done the complete opposite.

The things I said in version 1.0 are still true, let's be honest. However, I don't want to push it down my reader's throats. I never did, hence why I never posted it. It's never been me. Sure I'm loud, but what's the point? I want to use my loud drama filled voice for good, not evil.

So, what is the point of posting about a post? Well, a lot to be honest. I still have version 1.0, and people are welcome to read it. What I say in there is indeed true, but it does not come from a happy place. This post does not 100% come from a happy place either, but I have better clarity now. 

Thank you for taking the time to read this post. I hadn't given up writing, I'd just taken a (long) break. It's not about cheering the hell up. It's not about thinking 'oh there are others worse than me'. It's about stepping out of my unhappy hole, taking a look at the world, and realising sure, it's small, but it's mine.  

A Mum's Perspective

My name is Susan, a.k.a. Steph’s Mum. I thought it would be easy to put together a couple of hundred words about Stephanie from a mum’s eye view. This has proved to be much more difficult than I had anticipated.

As I am sure any mum will agree, all you want to do is protect your child and make it better. It doesn’t take long to realise that there is little you can do and that feeling of helplessness can be overwhelming. However, wringing hands is not really of very much help nor is it very practical. As with the growing-up milestones:  first day at school; first school trip; first solo car drive and so on ….  it has been very hard to let go and allow Stephanie to cope in her way, not mine.   

Naturally, she does have absolutely crucial support from Alex.   

Support is also a difficult area – how much and when? I have been struck with how caring and helpful strangers can be. We are supposed to be living in a more uncaring society than the ‘good old days’. I must beg to differ. One of the occasions that comes to mind and exemplifies the complete opposite was when Stephanie and I were travelling to Sarah’s (her sister's) Hen Party.   

As part of the journey, we had to travel from East Croydon to Victoria on a Saturday, at about midday. As I have been a country bumpkin for a number of years, I had forgotten how crammed the trains become! We pushed our way on to a train. Stephanie couldn’t really stand, but we had nowhere to go. A senior citizen tapped my arm. His wife had perched herself onto the table between 2 sets of seats so her husband could ‘budge up’ and Stephanie perch herself on the edge of the bench seat. All done with little ceremony.

Have I found the last few years been hard? Of course, but what has struck me particularly is the resilience of the human spirit. If Stephanie and Alex can face the bumps in the road with a we will just get on it attitude, so can I!!     

And off we go!

A few weeks ago (apologies for the delay!), some lovely friends and I ventured to Newcastle to see another lovely friend. I had my misgivings about the trip. Not about my companions, but the implications of my companions having to look after me. I didn’t want to impose upon their free movement, as I have my limitations. My worries were 100% unfounded. My wonderful friends took care of me, and they never seemed put out by it. They set up my wheelchair when needed with no fuss, working as a seamless team. To say I really appreciated it is a massive understatement!      

Now the initial ‘disabled’ stuff is out of the way, I can finally talk about the trip! 4 and some hours seems like quite a lot when you’re stuck in a car. This was not the case with this lot! We kept each other entertained throughout with singing, jokes and more sweets than Willy Wonka’s chocolate factory. There was also much chatting and just general silliness (no doubt fuelled by the sugar).

Once we arrived we threw ourselves upon our northern based friend with gusto (I may have held back a bit. Falling and spilling blood when you visit someone for the first time is rather rude). We enjoyed a cheeky game of Ring of Fire (very much harking back to my Uni days!), then went out for a lovely dinner. Once again, my worries about logistics were unfounded. The next day we ventured to the Baltic Museum to soak up some culture before we left. As with the Baths at Bath, I was very impressed with their wheelchair accessibility. No part of the gallery was unavailable to us.    

It was time to leave. With great sadness we left our friend to enjoy another 4 ½ hour car ride. Fuelled by even more sugar, we enjoyed our own renditions of songs with our own lyrics. My personal favourite was our version of The Proclaimers’ ‘I’m Gonna Be’. But instead of 500 miles it was 500 sneks (don’t ask).

What I have taken away from this is that when you have good friends, you aren’t the burden you believe you are. Friends see the person first, then the wheelchair/walking stick 2^nd (or even further back than that). Don’t be put off by logistics. Planning is indeed everything, but don’t let this scare you.

The trip was fantastic, and we have started planning our second. For this, I thank you so much friends.

MSaversary

Today marks the 6th anniversary of my MS diagnosis. I’m not sure whether this is something to celebrate or commiserate. On the one hand I’m very proud of where I am today; I feel I have achieved quite a lot in my life so far. On the other hand, I can’t walk very far, my fatigue makes it hard to function on a daily basis, and my bladder control leaves much to be desired. Of course a person’s life can’t be summed up in a simple list like this. We’re far too complex for that (hopefully I am anyway). It hasn’t really hit home that I’ve had MS for 6 years. My husband has known me longer with MS than without (by quite a long way), which is quite a shock when I think about it.

Looking back, I was so chilled out about my diagnosis. I seemed to take it in my stride. As I’ve said before, I was relieved that I didn’t have anything ‘worse’, whatever that might have been. I knew this would be a hard post to write. It’s kind of forcing me to look back and analyse the years I’ve had MS, how I’ve got better… and how I’ve got worse. The implications of a diagnosis are indeed massive. That’s why I try not to look too far into the future, and not into the past. The temptation to wish you had done something differently, to stall or stop your diagnosis, can be massive. I have done this many times, and am not ashamed to admit it. On the other hand, the past gives us strength. It shows us we can overcome whatever we’re faced with. I’m still here. I’ve made it to this point, right now, as have you. That’s definitely something to celebrate. To know we have got to this point in our lives. Whether you are having a particularly good time of it or not, hopefully it will pass, and eventually be only a memory. This is what I often try to tell myself. Sometimes it works, and sometimes it doesn’t. I know I’m still me, but the past 6 years have battered my loved ones and I quite a bit. Knowing you are the source of someone’s pain is beyond heart breaking.       

The moments where I am truly sad are like the ones above; knowing I am causing a loved one’s pain. This is why it can be hard to explore the full weight of a diagnosis. Simply, you don’t want to upset anyone! No one can fully understand, especially when I look back at the last 6 years. This is by no means meant to sound like an insult. Unless you have lived it, it is impossible to fully assess it. This goes for all of us. 

So what would I like to get out there on this monumental(?) day? I can’t promise it’ll pass, and I can’t promise everything will get better. However, I am a happy soul. I have great difficulties sure, but so does everyone in one way or another. I have a fantastic support network of family and friends willing to put up with me. I don’t know what the future will bring, but I hear good things. I’m very intrigued as to what I’ll write next year, for better or worse. 

My final thought is as follows: These past 6 years have gone by very quickly, and I don’t regret a moment of it (apart from my diagnosis of course).  

Terminology

I know, I know. Seems like a big snore. However, I would like to make a case against a particular word that holds a lot of power. Somewhat obviously it’s the word ‘disabled’. It may seem surprising I am only discussing words now, but I didn’t want to get into the heavier stuff until at least a few blog posts in. And here we are: I’ve managed to keep my promise to myself, to blog about things I care about. 

Words have enormous power. Once a word is defined and categorised, it can be very hard to redefine it. So, I’d like to think about the outdated terms for someone who is not considered as able as another person. A few that come up include ‘handicapped’, ‘weakened’ and ‘paralysed’. These did not come from me. These came from a website I have used many times, mostly when I ran out of ways to say ‘however’ in my thesis. Namely, the trusty website http://www.thesaurus.com. The antonyms are just as telling, that of ‘strong’ and ‘healthy’ (and of course my favourite, ‘able’). 

I don’t know why I take almost personal offence to this. I believe words are beautiful things. On the other hand, they can cause great damage, whether intentionally or not. I believe ‘disabled’ has become a damaging word. The connotations include being in a wheelchair for the rest of your life, and that life is filled with being unhappy. Apologies for the downer here, but I feel it is pivotal to discuss the damage this word has done. We live in a world of possibilities, but some of these are just not available to someone like me. Once again I apologise. I don’t mean to be overly negative, it’s just how it can sometimes feel. 

Don’t get me wrong, I have an amazing life and enjoy it greatly. Most of the time. We all have our down days, whether ‘disabled’ or not, and no one’s pain is less important than someone else’s. The amount of times people have complained of a cold to me, then apologised in a shocked voice, is actually quite staggering. Because I’m ‘disabled’ surely my pain is more valid/important/real than theirs? Of course it isn’t. Of course you can moan about your cold, as long as you let me moan too.

‘Disabled’ has become somewhat of a blasé term. It is used everywhere. The acceptable term for someone like me. Must we all be lumped into this category? How about just saying I’m Steph, who has MS? I have never wanted to be defined by my MS, but it is a part of my life. I’m still me; annoying, loud, chatty and sweary. I’d much prefer to be defined by these words than ‘disabled’. 

Bath, Bathford and Beyond!

As a surprise for my birthday, my lovely husband Alex took me to Bath, the Roman town with a lot to offer. I was a bit concerned there would be a lot of walking, so we took my portable wheelchair just in case. We arrived at our lovely B&B (and I mean seriously lovely), and had a tasty dinner in the pub nearby.

The next day we went to the Roman Baths, with the wheelchair ready to be unpacked. Alex was setting it up when we realised we had forgotten the foot supports, rendering the wheelchair almost useless. We were gutted to say the least. All the planning we had done – triple checking medication, packing way more socks than needed – seemed to fall apart around us. It may seem like a small thing, but that wheelchair opens so many doors for us

Luckily, the amazing people at the Baths were on hand. Before we knew it, they had produced a working wheelchair and took ours for safekeeping behind reception. I was more than impressed I have to say. The Bath museum was fully accessible with lifts and ramps here, there and everywhere. The only part of the Baths that wasn’t too comfortable were the actual Baths themselves. We even had a staff member apologise for the Romans, who didn’t really consider disability almost 2000 years ago. I let that one go, but made a mental note to be annoyed at the ancient Romans later.

Things like that can really make or break a trip, but only if you let it. When we realised we weren’t as prepared as we thought, it got us both down quite a bit. But only for a moment really. As is often the case with MS, you don’t quite know what’s going to happen. We did laugh about it in the end, but it took a bit of time!

After the Baths we went to The Pump House next door, enjoyed a coffee, and even an awkward happy birthday song from the staff. The cake they brought made up for the singing. We went back to our B&B (I had a lovely nap), and then went out again for some lovely Italian fare. They also brought me a rushed candle stuffed into some chocolate gelato (which was very nice I have to admit).

These trips really are about taking the rough with the smooth. OK we forgot some vital equipment, but the kindness of strangers saved the day. It’s funny how it’s so much easier to focus on the bad things. Good things can fade away into a haze of annoyance. Basically, you have two choices: Stay in the haze, or fight your way out. We chose the latter and the trip was so much better for it. Would definitely recommend!   

Am I allowed to laugh at this…?

I have always had an odd sense of humour. The terrible (sometimes inappropriate, sometimes sweary) humour that has become second nature to me can offend even the most solid of personalities.

When I was diagnosed with MS I assumed my sense of humour would stop. Completely. What was the point in joking anymore? The hand I had been dealt was frankly [insert expletive here]. After my adjustment to my diagnosis, my sense of humour did not fade away. If anything it became stronger (for better or worse). I don’t consider my humour a coping mechanism as such, but more like a place where I can vent through macabre – and sometimes self-deprecating – one liners.

I remember a while ago my Dad expressed how proud of me he was to take the diagnosis, and all things associated with it, in my stride. I was very touched by this, more than I can say. I think my sense of humour helped. I have always been one to crack wise at the silliest things, and my MS has become an extension of this; an extension of my comedic material.

To me this is not denial, but a way to let others know I am OK with my MS (most of the time), and the implications of it. Please ask me questions! The more the merrier! I am not going to bite anyone’s head off because they don’t know what MS is (I certainly didn’t before I was diagnosed). As I’ve said before, spreading the word is really important to me, and if I can make you laugh about that time I spilled drink everywhere because I couldn’t hold onto the glass properly, please laugh! And don’t you dare feel guilty about it!