Lockdown Lethargy

2020. The year I had so many plans. The year I was going to finally start making a name for myself. For years, I thought that my career lay in the media, making television and telling stories.

It was only 12 months ago I can’t to the realization that any success I did have in television had happened and wasn’t ever likely to be repeated anytime soon, at the age of 22 I’d already achieved my ambition of working in television.. so what do you do when you’ve accomplished so much so young? 

It has taken the loss of a job I was good at and cruelly dismissed from to make me realise what I was really made for. The Advocacy of Disabled People. My confidence had been knocked and as I started on a brand new career it took the support of my loved ones and my friends to help build my confidence again. Slowly but surely we were getting there, I was getting in the swing of things, the jigsaw was falling into place and I felt self-assured. 

And then, like that mean kid who ruins the puzzle by stamping on it, Coronavirus hit. 

Within weeks, work commitments dwindled, Social plans halted and someone pushed pause on my life. Locked down and because of my Disability shielded from the world until further notice. 

Like most people, this had been such a test for me. Everything has been taken away from me and to some extent, I feel robbed of my identity.

I’m used to being this smiling happy girl, with brightly coloured hair and makeup on my face, with the filthiest laugh. But I’m really struggling. I feel useless, fat and ugly and I can’t get myself out of it. I have stuff I could be doing and Every morning, I wake up with a plan to accomplish something. The broken night’s sleep I’m regularly having to mean that my energy is depleted and the enthusiasm to do anything disappears as quick as the motivation arrived

I’m unable to move as much because there’s nowhere to push to get the cardio going. In trying hard to make a concerted effort to stand every day to strengthen and stretch my legs.

My hair which is usually my trademark has gone from ruby red to a rusty bucket with a fat face to boot. 

I haven’t seen my friends and I’m waving at the family through a window 

Facetime is great but I can’t wait to see the people I love 

I’m writing this down not because I want sympathy; there are thousands and thousands of people in the same or worse position than me, I am lucky to be in lockdown with my Parents and have so many friends who call and check in every day, even when I’m grumpy tearful and anxious. I am fortunate living in a house with a garden and a roof over my head but I miss adventure and day trips. I miss having a purpose. 

I feel guilty, for moaning but also guilty for not using this time wisely enough, there’s so much pressure to be organised, have a plan, learn a skill, sort stuff, why aren’t I doing that? Should I be?

Instead I’ve become accepting of the sadness that comes with this time, taking each day as it comes and being kind to myself, understanding and acknowledging his much I’ve dealt with in my life, came back swinging when others thought I wouldn’t survive.

Those that know me or have read previous blogs will know that I use writing to get out the thoughts and feelings I am wrestling with, out. I also know that there’ll be loads of people just like me who are struggling. I am writing it down, so I can look back on this extraordinary time and see where I was and how I managed to bounce back… because I will bounce back.

My career, just like my life is there waiting for me when I return, and once I’m back I’m going to be the best I can be, even if the new me isn’t fluent in three languages, this world ain’t gonna know what’s hit it. Lucy Wood 2.0 – Thinner, fitter, Joyous – with the best hair you’ve ever seen 

 I’ll see the people I love and I’ll never let them go. 

When you’re going through a storm, steady the ship and look for the lighthouse and then look for the rainbows.

Standing Proud

I have a condition called Cerebral Palsy, it’s a chameleon of a condition, changing drastically and affecting those who have it in varying levels of severity, some have difficulties speaking, while others. Like me have difficulty walking. In my case it effected my ability to walk completely and I use a manual wheelchair to get where I need to go.

I have increased muscle tone in my legs, meaning that they are always turned ‘on’ and ready for action, I have never stood and so the tendons in my legs are shorter than yours and I am, when I do stand aided, on my tip toes for just a few seconds. Bottom line is my legs are shit.

As a result of being in a wheelchair all day, my body is in some sort of weird spasm most of the time. When I was younger, I’d never notice my pain much, but as I have grown up, I realised I am in constant pain all the time – Each day my pain levels vary, and on the very rare occasion that I’m pain free, I know that the following day, or the days after my pain spike is going to be big.

I am a young woman who is determined not to be too severely hampered by pain and so each day is, like for so many with a disability, a balancing act. I do everything I can to elevate the pain I have, and I have learnt to work with it and not against it. I take CBD Oil daily which really helps, early nights to stretch out my body that’s been crumpled up all day, and mindfulness are a regular part of my routine.

I had many ways to straighten my feet including these plaster boots on for 6 weeks at a time to try to create muscle memory and hold my feet on the correct position for standing and walking

As is often the case when I was at school as a young person with a disability, there was lots to explore to help my body, we tried most things that didn’t require surgery.

I stood everyday Monday – Friday for what seemed like an eternity, but was in fact, only 90 minutes in a standing frame, similar to this, it was the equivalent to torture there was no easing you in gently, two people would push, pull and manoeuvre me and many of my classmates into these frames, being told to ‘push up tall’ as the Velcro straps where done up tight around my torso and hips, no room to wriggle or settle myself into any sort of comfortable position, we were taken into class, and left for an hour and a half to concentrate on the first lesson of the day, whilst in the most indescribable pain.

It was no use trying to get an early release or a day off standing, if it hurt they’d say ‘You’ve not been in there long, try a little bit longer’ or the classic reply of ‘5 more minutes’ if I’d been the lucky one to be stood in the eyeline of the classroom wall clock, we’d pray for a medical visit, a swimming lesson or a school trip that would get us out of standing, the only thing that would  guarantee me getting out of the stander, was being sick, I’d never made myself sick on purpose but the sensation of standing would make me dizzy and sick. Delightful.

I was 15 when I stopped standing, My Parents and my physio couldn’t see the benefit, I’d had a growth spurt and it seemed like my brand-new boobs were playing havoc with my already limited ability to balance. I can’t say I wasn’t overjoyed at the fact I didn’t have to stand anymore.

I left school, attended college and university with never any mention of standing again, but as I said earlier, I was getting older, and my pains were more noticeable. The turning point of this pain management was one evening, Mum had made me an appointment with the Doctor, I’d been miserable and irritable all week, weeping and yelping in pain, not sleeping and at the end of my rope, the pain spikes had started to affect my mood with my family and I decided to do something about it

During my GPs appointment my lovely GP asked me to straighten my leg on the bed and was shocked when I couldn’t. He’d never seen me out of my chair before and once he did the first words out of his mouth was ‘You need to see a Physio’

That was three years ago and since then, I know see a neurologist annually and am currently on my second round of Physio and Hydrotherapy.

Before my first physio, no physio had touched my body for a long time my core was no existent and I spent a lot of time sat out of my chair unaided learning to turn my muscles on and balance it took so much concentration that it felt like my brain was boiling and after that set of sessions we started to see some gradual improvement.

I have now gone back to start my second set of physio, I realised I was developing a new ache as I started to learn my Level 1 in British Sign Language, my physiotherapist team are amazing and I told them my concerns, that I believed Sign Language was making my hands worse and they put my mind at rest, telling me it’s just the muscles getting stronger.  They have given me exercises to help both my hands, core and stamina – which help so much.

Conversations later turned to long term maintenance, and I mentioned how I used to stand as a child, how it was awful and how despite all that, I might, possibly like to try it again.

At the time of writing this, I am still attending weekly physio sessions and this week stood up for precisely 28 minutes today with very few wobbles in my legs. I still can’t get used to the dizziness and the sick feeling, while I’m stood up, and my legs and hips are killing but. I think my legs are getting a teeny tiny bit more used to standing in a frame.

The last few weeks, my brain, upon realising I’m stood up for the first time since I was 15, panics and sends my legs into spasms, that make my feet jolt and feel like I’m falling, today my brain, for the most part remained calm. My legs still shake uncontrollably at the end of a session

I am convinced that my constant pain that happens because I’m in a wheelchair, directly affect my confidence and mental state. If I’m having a huge pain spike, I feel low and if I feel low, I start to feel useless, which effects my confidence

Standing is NOT comfortable, it’s painful and if I’m honest, just recently there have been times when I’ve just not wanted anyone to stand me, but I’ll keep going, because I know all the discomfort now will be worth it and I know the standing is helping.

I’ll never stand unaided and I will never walk but I can’t tell you how freeing standing in that frame is. I almost never want to sit down

My Sign Language Journey

Last year  I made the decision to take up British Sign Language (BSL), it wasn’t new to me, I had attended a specialist school for people with a wide and varied range of disabilities, so much so my class mates and I were taught the basics of BSL to help me communicate with not only my deaf friend, but others who had communication difficulties.

And I’d often thought many times over the years, about gaining my level 1 qualification. After all as far as I was concerned BSL is a legitimate language in it’s own right and is a tongue I use far more than, French that I’ve actually got a qualification in.

It had been along time since I’d signed, I could remember the finger spelt alphabet and the odd phrase, so before I considered the qualification I signed up for a 10 week taster course before I went for it big time – and as I thought I fell in love with BSL all over again, it had been 20 years since I last signed, and in that time signs had evolved and changed a little and these days Makaton (a simpler form of sign language) is used for those who are hearing but cannot communicate.

The 10 weeks flew by and I made some great new friends, none of us really wanted to stop – Sign Language craves repetition and makes you inquisitive of the regional dialects of Sign Language, yes you can be deaf and still have an accent.

Those 10 weeks, with someone who was calm, encouraging and who has now become a close friend was enough to nurture my confidence and go and get my Level 1 Qualification.

This was a big thing for me, but I knew that this qualification would help show future employees how serious I am about advocating the rights of people with barriers and that not only that I would become fluent in a very exciting language.

The lady who teaches me is deaf herself, I recommend to anyone who is thinking about learning BSL at a qualification level to lean from a D/deaf teacher, you learn far more than just signs that way, the importance of your face, your body language, the movement and position of your hands all come far quicker when your mentored by a individual who is D/deaf.

It forces you to interact in your new-found language, you can’t be nervous, even if you don’t know the signs, if you want to be understood you must express yourself by any means possible. It’s quite liberating.

I’ve found a passion that I never knew existed, Sign Language craves repetition, you will find that if you stop signing for a short amount of time your brain gets filled up with other things and so the language you learnt makes way for reminders about groceries, to do lists at work, and just exactly what time are you meeting your mate for drinks?

Think about it, how long ago did you learn a language at school?  Do you ever use it?

A few of my friends from my 10-week course didn’t want to give up what we’d learnt so we decided to set up Happy Hands Sign Language Club a place for those who are local and have an interest in Sign to come together a support one another in Sign Language practice

It’s brought people together who I’d never ordinarily meet and we’re becoming a great group of people, people who have some one who is deaf in the family, have recently had a diagnosis of deafness, those interested in sign language and those who are learning. We are becoming a support network and I couldn’t be prouder of what sign language has done to enrich my life and those around me.

Daydreaming 

I’ve always been a wheelchair user, because my legs have never ever worked and never will. 

Life is pretty great all in all, I’m making the most of my life and embraced most of the difficulty I’ve faced. I’ve worked hard to become more than just my wheelchair. 

Sometimes, when my mind wonders I get lost in the idea of being an abled bodied person, the notion of it at first seems like an easy life, and then the idea just becomes confusing giving me a headache in the same way I feel confused when I think about how a fax machine works. 

Thinking about an able bodied me, would mean that it wouldn’t just be a pair of decent legs, but everything would be different but I often wonder if I’d have the same personality, the same friends or even the same lifestyle. 

When I started college I was interested photography, the only reason I didn’t take the course was because the darkroom was up a flight of stairs – I opted for Media Studies and, the rest as they say is history. Later enjoying a career in national television, for a while at least.

Who’s to say I wouldn’t have become a photographer? Would I have travelled the world? Probably with a high chance, I’d probably be married by now with babies. 

The reversed lifestyle isn’t the thing that upsets me so much, all though it would be nice to find a Superman, I’m not bothered that I haven’t travelled as much as I probably would have. 

The reality of this daydream is of course, pointless, it’s full of if, buts and maybes, and the thought of what could have been always brings me back to the reality and all I have to be greatful for. 

My disability has shaped who I am, given me the friends I love  and a family unit so loving and strong we can conquer everything, it’s given me a drive and determination to achieve, something that o don’t believe would exist if I was able bodied. I’m sure I’d be a far more complacent person if my legs worked, rather than the passionate person I am. 

Would I have the empathy for others, I know that despite my difficultly I am extremely lucky to still to just have mobility problems  in the main. I’m still very much an independent person as much as I can. 

I pride myself on empathy and kindness or to at least try to be kind, I often wonder if the able bodied me would be selfish and actually quite horrible. 

We will never actually know any of this, but I’d like to spend a few hours in a room with able bodied me and ask her a few questions. 

What’s it like to walk? Am I more successful? Have I got a husband, a family? – it fascinates me.. The curiosity sometimes keeps me awake

All that said. I’m quite proud of me, and it’s often better the devil you know than the one you don’t! 

Dating Disaster

So I’ve been debating wether or not to talk about this for a while. Up until now, I’ve struggled to talk about it without sinking into a pit of despair and humiliation. But here we are, with me staring at this page feeling like I should share this with you, dear reader. 

It all started back in November, in a quest for love, more than 18 months previous I’d signed up to an online dating site. Got the most part, I infrequently checked the app to see if I had any messages. I never ever did, so last November I decided to delete my account and give up on love. 

As I went to part company, I noticed that I had received a message at long last! The message said ‘you sound so full of life, (I’d made an effort with my profile, after countless rewrites) and you  have eyes I could drown in.’

I thought he was trying to he nice, and we’ll at least it was more than a one word ‘hii’ so I replied. Genuinely thinking he’s lose interest in me once he found out about the wheelchair. He didn’t, and as the days turned into weeks we found ourselves enjoying the messages. So much so, he asked me on a date. I was retesant at first, onlu because I’d never been on a date before. But after repeatedly asking me, and reassuring me everything would be great. I said yes.

The first date went brilliantly, he turned up, we had stuff in common and conversation flowed. So much so he wanted to see me again. 

He didn’t know when though, he was a teacher and with the end of term fast approaching, he’d be busy on the lead up to Christmas. 

I’m not one to get excited about things to hastily. I hadn’t told many of my friends I was dating until I was sure what was happening, the constant ‘good morning’  messages were so nice to wake up to. He’d tell me I was beautiful and how he couldn’t wait to see me.

He even surprised me at the German Market with my friends, kissing me and holding my hand without bothering if anyone saw, it made a nice change from fellas who were scared of telling me how they really felt because I’m in a wheelchair. 

He made an effort with my friends, wad nothing but gentlemanly and even my friends were impressed. For once I was happy, if was what the first flush of love felt like. Sign me up for the whole lot. 

Slowly but surely, my non existent confidence grew and I started to feel worthy this genuine guy really did like me 

Or so I thought.. 

It was a Friday night. I hadn’t heard from my date all day, which was unusual, I’d get at least a ‘morning’ text.. But today I hadn’t. I’d spoken to my friend who’d talked me down from a panic and fallen asleep sure that in the morning, he’d be in touch.

I woke up at 4am, knowing something wasn’t right, I had a compelling urge to Google his name. I don’t know why, but that’s exactly what I did. 

I typed his name and the School he worked at as a history teacher in the box..  ‘The school are currently looking for a history teacher’ said the website. My stomach learched.

I then typed his name and where he lived. Up popped a result from the local paper, an article appealing for people to help him find the engagement ring he gave to his fiance. 

‘Andy’ wasn’t on Facebook, but his fiance was. So in complete disbelief I sent her a message telling her everything. To my surprise she didn’t seem all that shocked, telling me I should  ‘Talk to him’ with confirmation it was indeed the Man if been seeing. 

I texted him.

Long story short. He lied. About everything, apparently he had his reasons, although, when I asked what they were he didn’t tell me.

I was devastated. Still am, just like that he was gone, destroying what little confidence I had. So damaged, I don’t know if I’ll ever get it back.

I can’t trust many guys anymore and I really don’t know how I’m ever going to find anyone who will fancy me again.

I’ve deleted the online dating site and I don’t intend to return.. But as someone who is never looked at twice when dating in the conventional way, how do I find my Mr Right? If I’m honest, I’ve never felt more alone. 
Ask Me how I am, I tell you that I’m fine, I have great friends and a loving family, but now I know what I missing.. And it’s something that can make you feel amazing. It’s killing me more than before.

Maybe I’m never meant to find love. 

I hope Andy is happy with his wife. He’ll never really understand the extent of the damage he’s caused.

Disappointing Disability Dates… A true story of a massive Arsehole

My love life is often the hot topic of conversation between Friends, they can’t understand why I’m single and I am often told what I could do to improve my chances with the male species. Growing my hair and try drinking wine instead of pints, have been two of the more ridiculous suggestions from my mates.

Of course the reason why I’ve been single for the longest amount of time in human history I’d because of my situation. At first glance my wheelchair can be a bit of a distraction from the nice person in it and is often, frustratingly a deal breaker. It shouldn’t be, but it is.

People frequently ask me if I have ever considered dating a fellow disabled person, after allwe would have such common ground, and a deeper understanding of the struggles we have? Right?

Well, the awnser is, yes I have considered it. And I have briefly dated someone who was like Me before, but it’s never been something I’ve been a fan of. Love shouldn’t be based solely on the convenience of the exact same situation of both parties. Love should compliment each other and not be born out of disabled issues.

Don’t get me wrong, if this presented itself in the form of a fellow disabled lover, I wouldn’t hesitate to eat my words, but the truth is other the majority of disabled people are knobheads. Before you recoil in horror, I have startling evidence that I will be proved right.

Last week I got talking to a Man my age on Internet Dating, things were going well and when I broached the subject of my disability, he said he wasn’t bothered, as he had Cerebral Palsy too, but his just effected him very mildly.

We were getting on well, so instead of bolting for the door I continued to chat. He was charming, and interested in me and, like me he didn’t seem the type to get pitiful about his situation.

A few days in however and there was a side to him developing I didn’t like, he would get upset if I didn’t say hello, and wouldn’t believe me when I said that the only reason I hadn’t was because I was busy with work or that I was at a family gathering and didn’t want to appear rude to family by replying to his messages all day.

I’d pay him compliment and he’d question every element of it asking why and questioning every element.

The constant accusations, we’re too much for me so I politely told him that I didn’t think this was going to work, I advised that maybe he should chill out a bit and go with the flow, after all dating is meant to be fun and exciting, I wished him well, and let it be and thought no more of it..

Last night at 2am I received a barrage of messages, this was the general jist:

Hi.
I just want to wish you luck in searching for Mr Right, Glad my time was wasted I mean, I love my time being wasted. NOT!

I understand that you can’t see through my CP. Oh well, never mind. 99.9% of women. Pity really! I do whole heartedly believe that your ‘disability’ is a front and possibly fictional, who knows..

It went on, I could continue, but I won’t..

But his messages were extremely offensive and goes some way to show others that disabled people are not empathetic, we don’t swap stories and encourage each other to be strong and confident, instead they play a sick game of disability top trumps, bitching about how no one understands and playing the tortured soul act.

I cannot be with any person able or not, in any form, romantic or otherwise who is hell bent on becoming an outcast in society.

And I’m not easily offended, but to question if my disability is made up is a new low I’m fact, I think it maybe the worst remark I have ever had directed at me. Who’d have thought I’d be a fellow disabled person to deliver the blow..

Maybe I live in a fairy tale land, we’re love is a belief that I hold on to, I can’t help it. I was born into an era when the Disney Princess franchise was in it’s infancy and there for rammed down your throat, twice as much as it is these days.

If I’m honest with you, this whole experience has left me disheartened a little, I don’t even see the day when someone outside of my close knot friends and family takes a shine to me.

I know that there is so much more to life than love, but I am only too aware of the feeling I’m missing out on something so lovely. It just doesn’t seem fair…

Date someone who is like me? Errr no thanks.. I’d rather be single!