Where on Earth Have you Been?!

 So, how’s it going? I really mean it and I really want to know. 

Saying it’s been a long time since my last blog post is a bit of an understatement! It’s been over a year since I last rambled to you good people. I’ve wanted to write again for a long time, but it’s been difficult. What should I write about? Does it even matter? As we all know, the world is going through a lot right now. We’re all adjusting to a new normal (whatever that means) and I’d like my new normal to include writing again.  

That brings us to my first question: where have I been? Right here to be honest! I wish I had something more interesting to say on that. Obviously we’ve had no holidays, not visited any new or interesting places. My husband, cat and I have just been living in our space, trying not to go crazy. And I think that’s the case for a lot of the world right now. If you have any good quarantine coping mechanisms I’d really love to hear it.

People have been asking me how I've been doing during the pandemic. The honest answer is I've been fine, for the most part. As I've found myself saying quite a lot: my world is quite small anyway, so to me being home more doesn't make much difference. We have the massive benefit of a garden, and I don't even take full advantage of that! I'm very comfy in my own space. It's not that I don't like to leave, but I'm OK if I don't. This may seem a bit mad to some, but it's definitely helped during this pandemic! 

I'd like to give advice on how to come out of quarantine in one piece. However, I wasn't one piece when the quarantine started! Don't take this in the wrong way. Of course it's hard, but it is what it is. Or rather MS is what it is (at least to Alex and myself). What I CAN suggest is to reach out to people you care about. They're going through similar things to you, I'm sure. Skype, Zoom, Teams, Facebook Messenger, WhatsApp, email or even picking up a phone! There are so many ways to contact loved ones. But I know for a fact I never pick up the phone enough. This is definitely something I need to work on.

Obviously this isn't all just about me! Alex has kindly written how he feels about all this too:

It was a bit of a shock to the system - especially no longer driving to work and working from home everyday. Driving, especially, became such a rarity that the car literally broke down on the driveway due to lack of use (that was a fun AA Homestart upgrade).

In some ways, for how we’ve lived recently, I felt we’ve been lucky and able to cope fairly well. The house has remained our sanctuary and it continued to be even more as lockdown came in.

If anything this whole situation has made me appreciate what I have. I’ve been fortunate to keep my job and work from home, and I’ve been fortunate to have a local, quiet area around where we live to explore and find some hidden gems.

Short, sweet and to the point. I wish I was like that...

See you all soon,

Steph.

X

7 Years Strong(?)

Don’t let the ominous title fool you. I am strong, even if my body isn’t. 

Today marks 7 years since my MS diagnosis. I recently re-read my 6-year anniversary blog post, and a lot of it still applies. So why bother writing another one if not much has changed? This isn’t just because I promised to write more and it’s a good excuse (although that is true). It’s because I live my life in it. I am not going to lie, every day is a struggle in one way or another, and this is a way to remind people. Despite what some may tell you, I do not wish to be the centre of the universe. I just want to remind you, reader, that we are here, and are sometimes drowning quietly on your peripherals. We are only human. We cannot fight every fight and notice everything. I don’t expect that.

I’d like to take you through a typical day. Just to highlight the thought processes that may play on a disabled person’s mind. 

Morning 

1. Whether I have had a fantastic night sleep or not, I am exhausted when I wake up. The kind of drained you get when you haven’t slept for 3 days. 
2. My legs get horribly stiff during the night. I need to gradually get them going in the morning by stretching and slowly getting out of bed.
3. The decision whether or not to shower is genuinely a hard one. I’m really slow, and getting in and out is very difficult. I have to carefully (using the sink for balance) get my left leg into the bath. I then need to use one arm to steady myself while I use the other to get my right leg into the shower. I only shower for 5 or so minutes because that’s how long I can stand; even then I use the walls for balance
4. To get out, I repeat step 3, but in reverse, while soggy and slippery, with bad balance, and without glasses.
5. Next, I use the walls to get back to the bedroom while trying to keep a towel around me.

Ughh. You know where I’m coming from. I won’t bother with the rest of the day! But hopefully you can see what I mean. The things I used to take for granted, that come naturally to others, take almost military planning to achieve. No wonder I’m always exhausted!

The tone of this post is decidedly different to my 6th anniversary version. This is not only intentional, but needed I feel. The idea someone such as me is happy with their lot, that they do not wish to regain what they have lost, may not be 100% true (I have said this before). Would I go back to being able to walk down the street (or just to the end of my garden) without additional help? Of course! Without hesitation. My only stipulation is I would not want to lose the insight I have gained over the past 7 years. Disability was never in my mind. Simply, I didn’t know anyone disabled. Now I am that person. I see the world from a whole new angle (usually lower, from my wheelchair). And some of it is not very nice, but most of it is people just trying to help. 

So, what would I like you to take away from this? Last year’s blog still applies, but happiness can come in peaks and troughs. I have struggled with my mental health this year. Not only because I have a chronic condition, but the realisation of how much that condition affects others. The people I love the most. 

Of course, it isn’t all doom and gloom, but I’ve always wanted to tell it as it is. And I do. Please enjoy everything you have, appreciate what you may have lost, but don’t let it own you or get you down. The world is a varied place, and we never know where we may end up next. 

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.