Robbie Williams 23rd June 2017

On Friday night, 23rd June, I went to the Queen Elizabeth Olympic Stadium in London to see Robbie Williams with my Mum.

We went up on the train and I was in my wheelchair. So far, so good.

When we got off the train, it was relieving to see so many security guards about and police manning the site.

Walking around Westfield shopping centre wasn’t something we intended to be doing, but we had a couple of hours before the gates opened so we figured “ah, what the heck!” It was quite difficult because when you have no money, and left bank cards at home because of that purpose, all I could do was shop with my eyes!

When the gates opened, we headed to the stadium and it was hectic but manageable. I panicked a bit when I saw a load of port-a-loos, as I wailed to my Mum that I couldn’t use one of those, and she said there must be some normal toilets inside. Fortunately, there were, and one for disabled too. Phew! Sounds silly, but that was such a relief to me. Bathroom anxiety sucks.

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The disabled access was on the one level, which was great, and whilst it wasn’t the “best seats in the house”, we were there and all I could hope for was that the two silhouettes of Robbie on either side of the stage were screens, as I couldn’t see anything but tiny ants (well, people) moving about! (Fortunately, they were!) … They might want to rethink where disabled seating is, because disabled people also include those with sight problems!!

 
The gig was amazing. The warm up act Erasure, with only one of their songs I was able to sing along to (A Little Respect). I didn’t know whether to feel young or just not in the know! Robbie’s main set was incredible, as usual! (I’ve seen him a couple of times before!) Such the entertainment. Paying respect to George Michael, and the victims of the recent terror attacks in Manchester and London. It was just amazing and emotional.

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Then, what happened after was only what I could describe as diabolical and disgusting. The crowd headed out of the stadium in different directions, that we got caught up in a tide of people walking a way we don’t remember! We ended up going backwards and forwards trying to find our way back to the station, and what had been an easy signposted route to the stadium, was not so easy on the way out of the stadium!

We found ourselves at the bottom of the bridge we needed to be on, and the only access was a flight of stairs taking us to the top, otherwise, it would have meant walking all the way back round to the stadium and back to the entry to the other side of the bridge. The ONE lift which would have been used for disabled access had been CLOSED.

It wasn’t that it wasn’t working. It was because there were simply not enough members of staff to man the lift ensuring it was only disabled people only and not the general able-bodied gig-goers.

We were now joined by several other wheelchair users at the bottom of the lift, trying to gain access. With the workers refusing to get it working, the police were asked to try and talk some sense into them.

Unfortunately, this didn’t have much of an impact, and as I watched one of the disabled people start struggling with the stairs on their crutches, and a member of their party fold and carry the wheelchair, a couple of girls who’d clearly enjoyed themselves at the event and spent too much on alcohol, decided that they would help me out…. Only I didn’t get a choice with what I was going to do!

They starting shouting about the issue, and without me being able to have my say, I was promptly lifted in my wheelchair, by several very strong men! (They must’ve been strong, because the wheelchair I have weighs a tonne!) and a pathway was created on the stairs for them to carry me through! The police and security could see the crazy event happening, and no doubt feared for catastrophe! Fortunately, no-one was hurt or injured, and I was placed on the ground and able to get on with our journey home! Only to be approached by one of the workers from the venue telling us there was a lift we could have used! I explained what we were told, and had he have looked over to his left, he’d have seen the lift was shut off by a BIG silver gate in the way!

It was disgusting that there were no thoughts into the welfare of the disabled gig-goers after the event. Why have signs on the way in to the venue, but not on the way out? Why allow disabled access on the way in to the venue, but not on the way out? Why were there not enough members of staff, especially at a gig as big as this, after the recent events? It was horrendous and let down a lot of us.

It didn’t stop there, because we then had to make our way to the train station, and finally we saw a sign for it. We headed in the direction, to yet again be greeted with stairs, and told we would have to walk all the way back up the slope to get onto the disabled access part. Why was this not signposted?! We then were told to use the lifts through the car park, which would take us down to the train station level, except what they didn’t tell us, was that this was also the lift to each and every goddamn car park level!

There were queues of able-bodied people waiting for the lifts, to attend to their cars, when there were signs posting to stairs. All we needed was to go down to the bottom level, and everyone else wanted to go up! I was so, so anxious about missing our train home, especially as it was a direct train, and the last one without changes.

When we finally made it to the level we needed, we were then told there would be a bus service partway through, which would mean we would have to get a taxi due to the wheelchair. Again, something else thrown into the mix! We managed to get onto the train with 4 other wheelchairs (only just though, as it was already packed!) except we were squeezed by the toilet, which wasn’t very pleasant at all. Especially when we had 50 minutes travel time! As passengers got off at the various stops, we were able to move about a bit, and then we were told over the tannoy that the train would be passing through our station! We didn’t need to get off, so were completely confused about what we had to do. Did we have to get off and catch a taxi, or not? What time were we going to get home? Were we ever going to get home?! (Haha!)

Discussing with a train worker, he ensured us we didn’t need to get off and that he had no idea why we were told about the replacement service. Fortunately, he was right and we managed to get off at our station, and my wife was there to greet us. I needed help getting out of the wheelchair because everything had seized up and I was in agony. It had been a very long and exhausting day, and journey home!

I didn’t get to sleep till gone 2am. I was desperate to show the photos and videos of the gig to Lauren, who I’m sure just wanted to go to bed! Then on Saturday, I was struggling to walk, the pain was intense and I wished for it to go away. I had rested, and gone in the wheelchair so I was less likely to suffer, yet I was tormented by pain anyway!

It appears that with fibro, you really can’t win! Your body will still attack when you don’t want it to!

(Unfortunately we don’t have any photos of my wheelchair lift up the stairs because it all happened so quickly, I think my Mum was just as petrified as me!)

I’ll leave with words from Robbie, after the recent events, and the amazing overwhelming response from the crowds as they left the venue…

“We are strong, we’re strong… We’re strong!!!”

Thanks for reading. Don’t forget to follow me on Twitter.

Til next time, keep safe and I’ll be back soon!

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Life exploded!

I thought everything was getting better. At least, that’s what it’s meant to do, right?
I’ve had a few problems over the past couple of weeks, and whilst I’ve dealt with things relatively well, I still cannot change my thought process of anger, frustration, hurt and pain and repeating those life moments I’d rather forget, in my mind. I’ve been endlessly torturing myself with my thoughts and wondering how I get by each day. There’s been time where I’ve perhaps snapped at people, although my frustration and issues, I’d like to think don’t turn me into a complete bitch, I’m perhaps more blunt than usual, and struggle to see the other persons viewpoint, or even consider their own feelings. I thought I’d been managing that, and whilst I do incredibly well now, my own emotions and behaviour get the better of me at times of crisis – which I’m sure is to be expected when you have a personality disorder, but I know it doesn’t excuse my behaviour. Aside from my little tantrums of removing myself from group conversations and feeling irate with all my friends, I’m cautious not to push them away, and for me to repeat the same pattern I’ve been in before with reasons why people seemingly disown me for.

I’m hurting, but I don’t need to take it out on others. Nor do I need to take it out on myself. So by replaying memories in my head and thinking of the “what ifs” are torturing and doming more damage than good. It’s pointless.

I want to be happy, and whilst it may be hard in society these days to feel happy in our day to day lives without feeling scared, fearing if and when the next terror attack will be, because we all know it’s going to happen, I know that it is still possible to feel “happiness”, even if briefly!

I’ve wanted to see my care coordinator recently, and it’s so hard knowing I’m being discharged. I still haven’t received any information about the ‘Moving On’ group, I’m supposed to be attending. I gave in and called the offices to find out, but they obviously don’t have a clue either, so have had to email my care coordinator, even though she’s left but still in the services, to find out what’s happening. I don’t know how long I’m supposed to leave it but we’ll see how long I can tolerate before enough waiting is enough.

So, what’s been going on?

Mainly family stuff really. Whilst that’s not much of a change, I thought things were okay now. And then I’m hit with some news: My brother (the one who’s accused me of something, and has manipulated, bullied and beaten family members), is expecting a baby with his partner. I should be happy, but I’m not. Admittedly, there’s a bit of jealously, how someone so horrible and cruel can be given something so beautiful, and yet for me, a very maternal woman, have wanted a child since I can remember, but being in a same-sex relationship makes that quite complicated! I didn’t find out from him, I don’t talk to him. In fact, I hadn’t been giving him much thought since he completely ambushed me with ridiculous fantasist bullcrap. I’m not too sure whether I should congratulate him or not bother. I probably shouldn’t bother. After all, this will be a niece/nephew who will grow up believing their family hate them, or not know we exist. We’ll never get to see them because of where they live, so in reality, it’s just how the other half live. We just have to let them get on with it. Family move on, and whilst I’d like our family to be one big happy one, it’s not going to happen. Ever.

I’ve also struggled with my other brothers ex, and discussing with her the importance of my brother still being included in things to do with his child, even though he often avoids seeing her. He continues to be self destructive, and although he cares about her, apparently his mental health is no excuse. I beg to differ, but I can’t argue. I have the fear that I’ll be stopped seeing my niece, and she is so important to me.

I think these two issues alone are enough to complicate the mind and heart. I have one niece I love and adore, and another niece/nephew on the way, who might not know of my existence, and how am I supposed to acknowledge them? Do I just avoid it completely and deny the child their Aunty? It’s heartbreaking to think of this.

Then, I’m struggling physically, whilst I do my best to get by, I’m over doing things again… Another one of my self-torture things, where I can’t visible self-harm, but still cause myself the grief in making myself hurt. I do try and allow myself rest days, but if I’m spending more time in bed, I fall into depression and self-pity. I hate the phrase “I wish I was normal”, because there is no such thing. I wish I was “healthy”.

I’ve been testing myself recently with other things too, after holding a stall at our local Pride, I’d spoken to lots of people with my “work hat” on, and although I tried selling in the crowd, and couldn’t bring myself to speak up, at least I tried. I’d even spent some time talking to my own Aunty, who I hadn’t seen in just under a year, and whilst we play happy families, it is difficult because of what’s happened in the past. But whilst you try in those moments to forget, you also don’t mind the company, and miss what could have been. It’s difficult to know.

And then, only the other day I offered a few freebies to one of the girls who bullied me at school. After all it was quite a few years ago, and whilst bullying contributed to my mental health decline, I have to try and help myself by not letting them beat me. Y’know?

I’ve also been to the dentist 3 times in the past 3 weeks. First was to brave the 6monthly check-up, the second appointment was to have some new moulds made, and the third to collect my new mouth guards. My jaw is so tense, and I’m struggling to sleep or talk without the pain, due to the TMJ disorder/arthromyalgia. I didn’t realise how worn my other guards were until I tried out the new ones! I do wish that the steriod injection I had a couple of years back had actually helped me though!

There’s other things which run through my mind, but some things I need to think about how to phrase. Life is still complicated, and whilst I feel I can deal with things better, I am still struggling with how to manage. I’ll get there though because I’m going to beat what I can, and focus on doing what’s right for me… Even if there are a few knocks along the way!

I realise I may have gone off towards the end of this post. I’m writing with pain in my wrists, and this has taken so long to write out, and my thought process has been round and round and distracted.

Next time I’ll try again not to leave it so late before the next blog post.

Please follow me on Twitter for more “regular” updates here: @theghostwithinme

Until next time, take care everyone!

 

When fibro attacks!

For the first time, I sit in a crowed loud cafe, sipping Earl Grey tea and munching on vegan gluten free chocolate chip biscuits as I write this… I feel small, as though I don’t matter to anyone right in this moment. Everyone talking around me, volumes getting louder and louder as one group tries to speak over the other. All my sensors are heightened, so everything is in overload, especially my pain.

I’m in so much pain. My legs are aching, the muscles bruised from over working yesterday. It was a good day, and although I don’t think it was worth the pain, it’s made me realise that I need to speak up and be brave and opt for a wheelchair when necessary. I have one, so I need to use the darn thing to “preserve energy” and rest, and use when I know I’m likely to suffer more. 

I’ve been suffering from the extreme fatigue, and now it’s the pain.

I have a busy day tomorrow, and whilst the past few days have been busy, tomorrow will be the day I really need my energy, of which I feel I am currently lacking! 

I have a feeling that the pain and fatigue are going to send me into a right ol’ flare up if I don’t start slowing down!

These are the days I hate having fibromyalgia. My hypermobility causes my hips to go “out of joint”, my fibro adds to the pain, nerve shootings, bruised sensations, feelings of pulled muscles, even though you’ve done the same amount of walking the “average” person does. It’s days like this where I realise I’m not the average person, and that I do need to cut myself some slack now and again. The only trouble is, if you’re with a group of people, how do you fall back? You don’t want to slow down, you don’t want to show you’re incompetent. After all, years ago, I could run, jump, dance and walk without the pain, so why now? 

I say years ago, but I forget that it was years since my fibro diagnosis, and even last year after a clinician doubted it, and I was referred again for another assessment, to be told that yes, it is correct. Well, I wish I could be referred back to the pain clinic then, because I seem to be forgetting how to pace myself.

I don’t like drugging myself up on painkillers. They’ve already caused problems with the digestive system, and as much as I can function a bit more with them, there’s are times where they don’t even touch the pain, or there are those times that I can’t function because I’m so drugged up. 

With fibro, you’re living like you’re on a rollercoaster. You have your up days, your down days, and days which go round and round, where the pain fluctuates throughout the day. 

I have a hell’a lot of the fibromyalgia symptoms, and one day I’ll write this down because I’d like you to know how frustrating this illness can be. It is an illness, a syndrome which is now classed as a disease in some countries, and it is a disability which takes over your life when you least expect it.

My pain was gradual from my teens, knowing something wasn’t quite right, and years of backwards and forwards for tests. A relief to have the diagnosis, but not so much when knowing there’s no cure, just learning to manage to live with it.

I’m forever learning my fibro boundaries. I push myself to the limit and more, until I’m at breaking point. 

I struggle to walk and whilst using a crutch instead of my walking stick gives me extra support, I still feel as though my legs would give up at any moment. 

I know I need to step back a bit (Please excuse the pun), and limit myself, pace myself, and give myself the right amount of rest time, it’s just learning to manage time, activities and all sorts, all of which I struggle with due to my mental health! 

And that’s another story!

I’ll be writing again soon!

Whilst I’m still having bouts of fatigue, I’m having to try my best to pull through them and work on some new products for an event being held this weekend. I’m so looking forward to being able to crash completely, and not have to worry about getting up to do anything. I mean, as much as I hate wasting days in bed as it has an impact on my mental health, sometimes I need to realise that by staying in bed, it’s actually the self-care I need.

I’ve been struggling lately, even having to go out yesterday, I needed both walking aids with me. I’d have taken my crutches but they were in the cupboard and my extra walking stick which matched my other was in reach when I needed it. I just wish I didn’t feel so weird and judged when using them. I needed them because my legs were like jelly, my back was aching, and there were nerve pains shooting down my lower back and left leg.

I’m thinking of writing up another to-do list for my blog, as I feel I work better when I have that structure. Especially as I’ve not been writing as often as I have done in the past.

Not that I should  feel alarmed or anything, but my stats for the blog have been quite low, and of course I’d like to boost my reach, so I’m thinking of ways I can do this. If you have any suggestions, I’d really appreciate the input!

If I recall, there’s still a couple of things I still need to write about from my previous to-do list, which I WILL get working on. I need a day where my brain can function like a “normal” human being, as most of the time words are mumbo-jumbo, and I end up writing posts on Elefriends, Facebook or Twitter to try and make some sense of things.

There’s been a few things going on, so I will write them up soon too. I feel they are important to how I cope/manage with things now after therapy, so please bear with me until I find some proper awake time!

Until then, take care!

Welcome to June

I’ve been wanting to write a blog post for some time, but I’ve not only been busy, but I’ve also been hit with the fatigue of fibro. Most likely from overdoing things, which is annoying considering there’s so much which needs to get done. We’ve got a stall next weekend for our local Pride, and we’re no way near completion of stock. I thought we were ready, but when your brain doesn’t switch off, you start to realise all the flaws and need to make changes here and there, and add things. Lots of things. 

I hope to write a proper blog later on in the week. I had a bit of an emotional battle in my head due to a recent event, and although I have overcome it for now, it is something which will linger in the background for some time because of it being a current situation. (If that makes any sense?!) 

I write this as my eyes continue to close and I force them open, I need to rest. I’m exhausted. I need to listen to my body, despite my brain being wildly active! 

Welcome to June… Zzz…