Samantha nails it, again. Love this lady!

[content note for bigotry and homophobia] If you’re anything like me, this is a conversation you’ve probably had with your parents: “Ugh! I just hate her! She’s so awful!” “Samantha, don’t say ‘hate.’ Hate is a strong word.” “Fine, then, I strongly dislike her.” I always felt like I was being particularly witty, since “intense…

via yes, you hate me: Christians and homophobia — Samantha Field

Something monumental.

Possible TW- miscarriage mentioned, abusive relationship, sex briefly mentioned.

 

Well, something monumental has just happened.

 

So, as some of you know, PTSD is responsible for messing up timelines, and DID doesn’t help (the dissociative element screws with time, too!). Also, as some of you also know, we have been dreading July because we thought that is when, at age 21, we lost a baby we weren’t even aware we were carrying. We had broken up with the abusive ex-boyfriend we’d been dating for 6 years, and the stress made us stop taking our contraceptive pill, along with the fact that we had goodbye sex (one of the times we actually wanted to have sex) and didn’t use any other protection. As a result, we must have been pregnant for a while, but lost the baby.

 

Something Dr K mentioned in therapy today- about did we have a date for the miscarriage- rang a bell. We realised that we all WANTED a date. We wanted to remember the baby properly, as a real little human being who would, by now, be four years old and proud of it. So we went home and began trawling through emails, Facebook timelines and messages, and trying to piece a jagged puzzle together.

 

We worked out that the audition we went to take when we stayed with the ex was on the 15th June. We stayed with him possibly for about five days or so, during which he told us he couldn’t be with us any more. We had, ironically, the best few days of our relationship whilst we were together, and then on the day we headed home, he left us crying on the underground after one last kiss goodbye. After that found emails from us to a teacher talking about arriving in Paris to perform as if nothing was wrong, dated 3rd July. We stayed in Paris to perform until the 10th July, when we went home again.

 

We had always thought it was July where we lost the baby because there’s a poem we wrote, partially about breaking up with him and partially about losing the baby. That’s dated the 21st June 2011. We thought it meant that we had miscarried about then, but that, we have realised, doesn’t seem to be the case.

 

We realised, whilst talking to the Dutchman tonight, and whilst reading the journal that 26 wrote back when she was 23, that actually we miscarried right before we flew out to dance in Paris. We miscarried in June and pretended everything was completely fine in Paris, and grieved like hell all July. We left Facebook for a few months, only returning in September, but we saw various posts on our timeline in June and July. They’re all wondering where we were.

 

We were grieving, trapped in our minds and wrestling with the fact that there had been a baby in our womb and now there was nothing. We were probably anaemic, we were exhausted, we were running purely on adrenaline in Paris. We pushed the grief aside, loved our stay there, then returned to the horror that waited at home- grief denied, held back, becomes at least twice as strong.

 

We talked all of this out loud and the Dutchman listened. We cried, a lot. We realised that our timelines have been upset because trauma does that to you, so it is in fact this month where we lost her.

 

Yes, her. We think our baby would have been a girl.

 

A few months back, when we were fit and well at the Gym, we had befriended a cleaning lady. She was absolutely lovely, and had found a ring we lost. She knew that the Dutchman was the right person for us because she said she “had a good feeling”about him, and that he was lovely- not that he looked lovely, that he was. It was just as we were about to leave that day that she said, “Stark, do you have kids?”

“No,” we replied, puzzled, “why?”

She said, “Well, I’ve got the second sight, me. I’ve always seen things that aren’t there. I just asked ‘coz every time I see you, I also see a little blonde-haired girl with you. She’s about four, and she’s got blue eyes and she’s wearing a pink dress.”

We were, of course, floored. Nobody knows about the miscarriage but a tiny handful of people. This lady is an acquaintance we have met at the gym. She knew next to nothing about us, but yet…

We let her know that it was lovely, and we hoped it was a future child she saw, when all of us just knew that she was seeing the child we lost.

 

We told the Dutchman this story too and his jaw dropped for a couple of seconds. He seemed both pleased and shocked. He asked us if we had a name for her, and we said we never gave her one. I think that’s because 19 and I have locked the hurt away in us for such a long time that we didn’t want to let it out again, because the grief we feel when we think about our baby is wild and untameable and will ravage us if we let it. We have always kept the fierce love and the grief that goes with it locked up. Fourteen and Fifteen are different, they’ve always talked about their desire for children and how much they love them. The two of us thought that it was too painful- we all dealt differently.

 

We also let the Dutchman know all of this, and also that we probably would have had a set of names that we would have chosen from once she was born. We thought we would have three names, maybe, and choose the one that suited her best. He has been experimenting with hypnosis with us for a while, because it eases our anxiety (and helps with other things too) so he asked us if, using hypnosis, we would like to see her face and try and name her. We readily agreed, through our tears.

 

The Dutchman put us under, a sensation that’s pleasant and calming in equal measure. We began to stop crying, and breathe deeply. He talked to us until we were far enough under that he could begin to ask our subconscious mind to imagine that there was someone else in the room: our daughter. Not only our daughter, but a four-year-old version of her.

 

Immediately we were in floods of tears again. We described her to him. She had strawberry blonde hair, and thank gods, she’d turned out with hazel eyes and not the ex’s brown. She had freckles, a few on her cheeks, and thick dark lashes- also his, but more than that, it didn’t matter. She was ours.The minute we saw that cheeky face, we knew her name.

 

Fay Alice.

 

The Dutchman got us to imagine that our little Fay climbed up onto the bed to cuddle her mummy- us!- and then, she had to go. It wasn’t too awful to let her go. We had a potential date now, for when we lost her, and now she has a gender and a name. We have decided to celebrate her life when Monday night next week comes around. The Dutchman told us he was so proud of us, and he was incredibly honoured that we seemed to be able to take huge steps like this, based on the foundation of the relationship that we have with him. He’s not wrong. He makes us feel incredibly strong and powerful, as if we can achieve anything because he will always support us.

 

Nineteen and I have been moved by this. The younger two are thrilled- because, it seems, Nineteen and I have reached a decision.

 

We had been trying to decide between the five of us whether we were going to have kids or not. Nineteen and I had been trying to draw up a rational explanation for having kids, and one for not having them. We thought that if we had a morally correct reason for having children, we would be ok and we could have them.

 

What we both forgot was that behind the locked door with the grief and pain was intense, overwhelming love that literally obliterates any obstacle. We adore that child that never was, our Fay. We love her so much it would burn stars to black holes. That would be the last thing in the equation- we would love her so goddamn much. Having kids IS irrational, it’s the best kind of irrational. That irrationally strong love for her will guide us through.

 

The Dutchman said that if she had made it, he would have loved her too, and helped to raise her.

 

That settled it for the two of us. Nineteen near broke us all (in the best way) when she told the Dutchman we could at least try to have kids.

 

Fourteen and Fifteen haven’t been this excited for such a long time. We were all in floods of tears of happiness, they were too, whilst jumping up and down and being insanely happy. They just have always wanted to be a mum. The Dutchman cried. He told us that we keep making him cry, but that it’s a good thing because it helps him feel the depth of his love for us. At this moment, though, he was crying because he was thrilled to bits. He has also always wanted kids.

 

So, my little Fay, you are precious and special. You have a name. You are a human being that we got to have in our lives for the smallest amount of time, but you have made a huge impact on your grieving mothers. We saw you in our mind’s eye, and you have made us remember the incredibly overpowering love we have for you. We wanted to watch you learn to walk. We wanted to sigh, wipe banana from our clothes and try again. We wanted to brush your hair and kiss your little head and post you through the school gates, trying not to cry. We wanted to see your first tooth, your smiles as you watched that video you liked again and again and again and again. We wanted to count your toes, read you bedtime stories, prepare you for life… and, even though you’re not here, we have realised that we can have all that. It may not be with you, darling, but we will remember you if you have a little brother or sister. We will see you in them.

 

Thank you, little Fay, my ethereal Will-o-the-Wisp. You are so incredible. Mummy loves you very much- mummy 14, mummy 15, mummy 19 and mummy 26.

Feeling very much like this at the moment.

TW: difficult topics mentioned. Miscarriage, sexual assault, abuse, health issues.

 

The saga drags on. Now, it turns out, as well as the cyst, we have a sinus arrythmia. That is, apparently, behind the reason that we are always exhausted and the palpitations we’ve been experiencing. I went to the doctor’s (me, 26 that is) and got her to get us referred for a 24 hour ECG (not sure when that will be done), and blood tests which are being done tomorrow.

Depression is a constant friend at the minute. May this year was traumatising and triggering for all of us, and July is on its way. We all hate summer. Bad things happened years ago and they still haunt us. Memories from fourteen and fifteen being locked into a room with a boy who wouldn’t take no for an answer; from nineteen of arguments and a descent into a manic spiral of drinking and non-stop partying to run from the agony; from all of us, realising that we had just lost a baby we never even knew was there.

The Dutchman is his usual fantastic self. He continues to help each one of us with the things we find upsetting and hard, he’s still looking for a house for us, and he is always there when we need him. PTSD is currently shrinking all of our attention to that of a gnat. We are in pain constantly from the cyst, and he provides distraction from that and also the pounding heart that makes us black out.

 

So, the past few days, I have been trying to get an extension granted on our massage course. Because of that, I think Mum thinks that we are failing it- so, despite the fact that we now walk with a cane and can barely get out of bed without feeling horrendous, from the minute we get up it is constant nagging to get on and do some work with the massage course.

Yesterday we were trying to get to the kitchen and were swaying, the palpitations were thundering in our ears and we were unable to see. Instead of helping us, Mum just said, “What!?”

Ok, so I know we are irritating and talk a lot about how bad we feel, but for the gods’ sake, possibly compassion might help at this point? You know, that thing that might actually make all of us FEEL BETTER about the fact that walking is hard and often results in us feeling faint? No, apparently not. Easier to shout at us than actually help.

The next thing that happened was she said that she never let cancer beat her, that she only had a week off, that work got her through it. Holy. God. Where do I even begin?!

Depression, anxiety, mood disorders and PTSD are all physical as well as mental. There are BRAIN SCANS that show what they look like. The brain is damaged by PTSD, as has been shown in these scans. So, regardless of what we all look like on the outside, there are biochemical issues on the inside that prevent us acting ‘normally’.

That’s not even taking into account that we are literally fighting for consciousness because of an arrythmia which should, by all accounts, not be producing these symptoms because it is found in many fit people, and a cyst which makes it very difficult to sit up, to walk, to eat and several other things. The cyst was on a scan. The arrythmia was on an ECG. They are documented physical health conditions. I was in a wheelchair in Holland. Of course I am going to be depressed- the time of year, my mental health conditions and two physical health problems is a lot for anyone to juggle, let alone someone who is constantly reassuring three younger versions of themselves that they’re ok. How the actual hell could we be faking or malingering?

Thing is, everything I’ve just written makes me look like the bad guy cause she had cancer, and my issues are nothing compared to that. So I didn’t say anything to that when she said it. She’s trying to make me see that I can do it if she could do it, but the way Mum faced cancer was to run headlong from it into the arms of work. That’s where she’s expecting us to go, but PTSD, depression and DID make a mockery of our levels of concentration…

The next thing she said was that I was a clever girl.

 

As if that will make us feel better about the fact that we can’t concentrate/have a short attention span. Like it will magically fix the fact that we work ten times slower than we used to, because we don’t remember what we just read. Like it would miraculously make us realise that oh gods, yes, how smart we are, we can acheive anything, as if depression and PTSD are not already telling us that we aren’t because who the fuck can’t finish an easy course IN TWO YEARS COME ON YOU HAD SO MUCH TIME?!

I just left that one.

 

Every time we say we are full, she’s there thinking it’s a mental thing and we have to eat more. Brain is telling us we are starving, Belly is telling us NO MORE. There’s no way to describe how mind-fucky that is, especially for the younger ones. Fourteen and fifteen want to eat how we used to, and nineteen is actually freaked out for the first time in her life at how little we can eat now.

Every time we pick up our phone to answer a message from a concerned friend, she saying we’re addicted to that phone, put it down. You didn’t see what was on TV just then. Do I have to rewind it? We can’t leave the house unless we are driven, so that is our only link with friends since we are not on Facebook at the minute.

I’m exhausted. I want to go back to the gym. I want to be able to drive again- yep, due to the blackouts and headaches we have been getting, we are not allowed to drive. I want to be able to go shopping and not worry about blacking out in the aisle, and I want to be able to dance again. Apparently, all of these physical illnesses are in my head, and I have to just pull myself together and get on with it.

 

None of us want to be here right now- we would far rather go stay with R. Mum is convinced we are faking some of this, and she’s been unhappy about us ordering more painkillers. If we are that much of a strain, just stop taking us places, making us breakfast grudgingly, and nagging us to get on with our work. That way, at least you get five minutes of peace and quiet and you can go back to ignoring the very real pain we are in. After all, it worked so well last time- oh wait, no it didn’t. We ended up as a psychiatric inpatient.

I personally think she has far too much on her plate and is hoping that if she tries a little bit of “tough love”, we will stop being so useless and floppy and become happy-perma-smile-girl again, the one that never complained, overworked and ran to please everyone whilst making sure she never spent any time on herself (cause, you know, that would be selfish and self-centered. Self-care, after all, is just making sure you get out of bed with a perma-grin on.) and helping everyone, even at the cost of her happiness and health.

Unfortunately, we don’t work like that any more.

Currently, we take promazine, paracetamol, naproxen and tramadol, and that’s not counting the vitamin B complex and vitamin D pills. We are unable to bend down. We can’t breathe properly. We can’t eat properly. We are exhausted. We need support.

 

Looks like the only time we get support is when…. well, we’re not sure.

 

 

Read at depression comix at http://wp.me/s3zYhM-2

via 295 — Depression Comix

That week I had where I realised things are different, now.

Hi all… Please just be careful whilst reading this. I talk about the cyst again and a couple of other things that might be difficult to read. Stay safe.

 

 

So, Sunday came round and we did manage to fly out. Getting through the airport without assistance was hell. I actually asked when we were on the plane if I could have assistance at the other end, and luckily I was given some- I was wheelchaired right into the Dutchman’s arms. I was so thrilled to see him: we all were. It was such a relief to be able to hold him close and kiss him again. We always miss how kind he is, and we crave the physical closeness he gives. It makes us happy to be able to reach out, grab his hand and kiss it, pull it close to our cheek and feel his fingers on our skin. We love that he is so patient, so kind.

 

He wheelchaired us all the way to the CARDIS (yes, that is what we have decided to call his car! He could fit a swimming pool and a library in the boot!) and drove us home. I kept looking at him, smiling. We knew that even though our journey had been very difficult, we had him now. What could go wrong?

 

Going back to his house, it was great to see his parents again and the cats (he has two adorable fluffballs, snuggly and also full of character). It was amazing to climb into bed next to him, to sleep wrapped in his arms. This is what we are all working towards- all four of us want to end our day asleep next to him every day.

 

The next morning (Monday), sadly, we woke up in a lot of pain and discomfort. Turns out that if you will a cyst to go away by just doing stuff you could do before you had it, it screams bloody murder at you the next day. Mostly,. the day was spend lazing around in bed, cuddled up next to the Dutchman, or in the comfortable chair next to the computer where we both played XCOM. Damn, that game is fun. It helped that both of his parents are completely happy to let us just chill together, and they enjoy my presence in the house. We all like being there- it’s such a calm, restful environment.

 

Tuesday was a little better. We started to be able to walk with a cane. The pain was still there, but the Dutchman helped us to walk and we managed to overcome the pain for long enough to go and visit his auntie. She’s not well at all, and is thinking of leaving her house and going to live in a care home. She would like the Dutchman to inherit the house, and all of us liked meeting her. Her and her husband were huge fans of animals, have been all their lives, and they used to work for an animal rescue centre. They own a Bosnian dog, who has obviously seen horrors that no person or animal should ever see- she flinches when you make a movement. It doesn’t have to be sudden. Slowly, however, she began to trust us more and more, and eventually wanted the Dutchman and I to take her for a walk as we were leaving. The Dutchman’s Auntie wanted him to have the house because two cats live next door, and she is convinced that he will look after them when their owners can’t (or won’t, they apparently sleep in a box filled with hay in the garage. If you don’t want to have a pet in the house, don’t buy one!). I also think she wants him to have the house because of the kind person he is, and because of the rough time he has had finding employment in the field of work he studied in.

 

Wednesday morning wasn’t too bad again, but  showering and brushing teeth and washing our face was, and is, such an effort. The Dutchman helped us by supporting us in the shower. This is something we are not used to, seeing as we all are scared of the shower in varying degrees. Me, nineteen, I hate being touched by anyone but me in the shower. Twenty-six doesn’t like soap in her eyes and ears and being unable to defend herself. Fifteen isn’t comfortable with nudity, and Fourteen still feels a little strange when getting in the shower with a guy- she feels like she will be told off at any moment, although she wants to be in the shower. However, the showers we all had with the Dutchman have taught us something: this can be a nice process and it doesn’t have to be frightening. He lets us do what we need to do (like washing our hair, which we hate anyone but US doing) and helped us stand up when we felt weak.

We started to realise that actually, what he’s done for us all week has become our carer. We were horrified. We are trapped like this for no discernible reason, with palpitations and erratic heartbeat and nausea and anxiety and crippling pain, and he is shouldering the brunt of caring for us. We all realised that and were horrified.

Going to the house of a friend of his for dinner was a lovely change, and meeting her husband and three gorgeous kids was fantastic. I am still surprised we all managed to stay awake as long as we did. We loved the meal, although we were in pain, and it was so good to meet his friend- the Dutchman has talked a lot about her.

 

Thursday, and time for my parents and sister to come over. Again, we had to use a wheelchair, and the Dutchman pushed us all the way through the airport. Picking up my parents, we realised we were too tired and weak to get out of the chair. We all had food together, where the four of us ate a sandwich that would normally have been no problem for us, but right now it filled us up too much. The Dutchman made my parents, sister and I laugh, and there was light-hearted chat despite the wheelchair at the table. Having them meet the Dutchman’s parents was brilliant. Sis, the Dutchman and I went to the local supermarket, complete with cane, although I had to rest on quite a few occasions. We all had an absolutely brilliant time and a great laugh. We all agree, the four of us, that Sis and the Dutchman couldn’t be better suited as brother and sister-in-law (eventually!).

 

Friday resulted in more exhaustedness, because we had walked the day before. It was good, however, to be with our two families as they made friends and got to know each other. The sun had begun to shine pretty forcefully, and we had an outing to the local shop. The wheelchair came in super useful again, and I eventually became the trolley- we forgot to get bags, so we used me instead! Spending time out in the wheelchair slowly became more bearable, even more fun, and we explored Leerdam in the chair with the Dutchman pushing us around. Sis came too. We stopped off for a small pastry in one of the local bakeries, which was pretty awesome. The sun was warm, and there was a slight breeze. It got so pleasant outside that we ended up being able to sit out after dinner.

 

Saturday dawned and I struggled to get up. We all took turns that morning in ‘fronting’, which is our term for taking charge of our body. The Dutchman helped us change and brought us our meds, as usual, and we ended up being ready for our outing to a town on the German border. The reason? A friend of mine that both 19 and I have known lives in Germany now, with his partner (who is German, that should explain a few things!). The city we went to was the closest to everyone involved. We had the best day out, sitting in the chair, although it got incredibly hot! It was nice having all the family out too, there to enjoy the sun and meet our friend and his partner. The Dutchman has met them before and gets on like a house on fire with them, and we all have a lot of fun together. It was so lovely to be with them again, we didn’t realise how exhausted we were until we got back home again. We actually went out to eat that evening too and suffered serious pain from the cyst- reaching up to get plates absolutely floored us. Tea was delicious though, and the Dutchman kept wheeling us wherever we wanted to go in our wheelchair.

 

Sunday was a day of sheer exhaustion. We looked at the amount of medicine we had taken all week and were shocked to realise we were running out of some of it already. The Dutchman never stopped being kind and thoughtful, helping us with anything we needed. It doesn’t matter, he never tires. We had some laid-back fun, enjoying ourselves with our families and having a good laugh. In the evening, my parents, sister and I all piled into the Dutchman’s car and we went to see his brother and his partner, and their new little girl. She was born at the tail end of April, my birthday month, so we are already April girlies together… not only that, we will LEGALLY be her auntie when we are married to the Dutchman next year. She was gorgeous, so tiny and perfect, those little fingers grasping for mine already as she lay in her crib. Her mother is the perfect mother- she is so well-prepared for her, so perfectly able to respond and she knows instantly what cry means what. I’ve never met anyone else who gets tiny babies like we do, but she certainly does. In some ways, tiny babies are infuriating and occasionally impossible to figure out, but we have always found them easy… well, easier than two-year-olds!  We were all enchanted, family included. The Dutchman was the picture of the proud uncle. It made us melt.

 

Monday came, and so did horrendous palpitations. They were so bad, we spent most of the morning almost passing out, with the Dutchman snuggled up to us on the sofa, helping us be distracted by XCOM. We rang the airline I flew with and discovered that we needed to go and get to the airport earlier to ask for assistance, which we did after the Dutchman had packed our case up for us. He was amazing- he managed to fit in our new purchases, and also the wool that Sis had bought for knitting with! There was a LOT of it. The airport had, when we arrived, already been notified that I would need assistance, and what then followed was a very pleasant afternoon spent wandering (or wheeling) round a couple of the airport shops, sitting waiting for my parents and sister’s flight in a cafe, then the Dutchman and I waiting for ours together. We did not want to say goodbye to him. We had, despite things, had a brilliant week together.

 

He kept reminding us that we were not a burden. Supporting us in the shower, we were strangely unafraid. We only needed to ask him for something and he would run and get it for us. He carried us to the wheelchair when it arrived. He is everything I thought didn’t really exist in the real world, but we are all finding out that the younger two’s hopes for a true gentleman are, in fact, completely justified.

TW: (Possibly) Cyst-related news and explanations

So, for those of you who are kind of new to this blog, I’ll give you a brief run down of what’s going on. The trigger warning is there just in case anyone has issues with medical stuff. Also, for anyone who is really new, we are multiple, and have a fiancé

 

So, basically, I last had these cysts pop up in August 2015. I wrote a detailed post on it, have a browse through the archives. The cysts were found on a scan, and I was told that they would go away by themselves. I was supposed to wait and have another scan to check they’d gone. I never had the follow-up scan done- we missed the appointment.

This episode started in May, one of our worst trauma months. We were eventually admitted to hospital and had to have an internal exam, which was stressful and very upsetting. Luckily, we seem to not be experiencing any further psychological effects from that, possibly because the Dutchman was there, holding our hand and letting us know we were ok. He has been incredible.

In hospital, we had a scan, which showed there was a cyst- it was nearly 6cm long. We had felt there was something wrong and hadn’t had a good appetite in ages, which has had an impact on us now- we have lost muscle on our legs.

The hospital and the staff seemed to want to tell us that the pain we were in would go because the cyst was normal. They couldn’t figure out why we were in pain and blamed it on our monthly cycle, which is bullshit because we are on the pill…

They dismissed us and our pain summarily, because apparently the cyst would go and we would be fine. We were discharged with painkillers and told to go home and wait.

So we have waited.

Contradictory things we have been told include the following:

“The hospital isn’t what emergencies are for, that’s what A and E is for.”

“A and E isn’t for emergencies, you need to go to your GP for immediate help.”

“Why haven’t you gone to the hospital? We at the GP surgery aren’t here for emergencies. A and E is for emergencies.”

“If you’re in pain, go to A and E. They are for emergencies.”

“Ring your doctor and make an appointment, they will help you. Ringing here at the hospital won’t help you.”

A and E: “We can’t do anything to help you.”

GP: “We can’t do anything to help you.”

Hospital: “We can’t do anything to help you.”

 

What do you guys think we should do next?

We have been on all of these medicines, at one point or other…

•Ibuprofen

•Paracetamol

•Codeine

•Co-codamol

•Naproxen

•Diclofenac

•Tramadol

We are on Loestrin 20, which is a birth control pill. That’s a combined one. We have been on Progesterone Only Pills before this one.

We wondered whether anyone out there has any advice, because we have really got no idea what to do next. Our scan is on the 27th, and our follow up appointment is on the 28th.

We would love answers.

Struggling on.

I just want to let everyone know that I’m struggling today. I’ve been putting a brave face on my pain, but today, I’ve just had enough. I’m tired and depressed and struggling with everything. July is on its way, which means re-living losing the baby. Right now, with all this pain too, I’m dreading it.

Just asking for a little support, and hoping I get answers soon.

Disability matters.

Last night, I realised I had overdone it. I hobbled back to the bed, sat down, pulled myself up to the bedhead with just my arms working (using legs and stomach muscles hurts too much) and, with shaking hands, found and took a tramadol. Lying there, talking to the Dutchman, I just breathed and hoped it would go away soon. It hurt so much.

Thing is, I spent a week in a wheelchair when I went to the Netherlands to see him. I also used a cane to get around and had to do a lot of sleeping the first two days because moving about was incredibly painful and difficult.

The last time I was in this much pain was when I broke my back in 2012. On holiday in America in 2013, I needed to use a wheelchair for the last part of the day in Universal Studios. I remember being pushed past hundreds of people, and feeling like I was going to be in the wheelchair forever. It was so hard to eat, because I was in so much pain. I felt exhausted and slept for most of the next day.

Since then, I have developed a fear of being in a wheelchair for the rest of my life. Me, 26. The others are worried but not terrified.

That experience in Universal Studios taught me something. I watched people’s faces crease in pity for me, and I had small children stare. I think a lot of them were staring in horror. I look younger than I am. Wheelchairs are for old people, right!? Why is that girl in one!?

The cyst is still there. I’m still in pain, but maybe I get an end to this at some point.

Someone with a permanent, chronic illness does not.

Through being in a wheelchair, I’ve gained a small insight into what it must be like to be permanently in one. What it must be like to be perfectly mentally capable, but have someone stare over your head and ask whoever’s pushing you if you wanted chips or rice with your meal. What must it be like to have someone glare at you when you weakly stand, legs wobbling, to go and use the disabled bathroom- you can stand, surely you’re a fraud! The look on one woman’s face as she sees you laughing with your family and fiancé at your fit, able sister’s amusing antics, because YOU’RE IN A WHEELCHAIR, and you’re young. Why are you not walking!? Lazy cow.

I have it lucky. I can only assume at some point, I will be able to walk properly, to run again, to go to the gym and to actually not be in pain when I eat or go to the bathroom. That will happen for me.

However, for a lot of people out there…

This is their reality.

There are hundreds, thousands of people across the globe who can’t get out of bed in the morning without a carer, friend, or partner to help them. There are hundreds of people who look at the entrance to a building and feel defeated, because they can’t get their chair up those steps. There are people every day who have to patiently explain to intolerant assholes that actually, they have MS, and whilst they can walk a little, they can’t walk the distance through an airport the size of a large shopping centre without collapsing at some point.

 

To anyone with any sort of disability, I’ve been put in your shoes two times now, and, as a usually able-bodied person… I apologise.

Society treats you like second-class citizens. It does not hold doors, build ramps, or ask the right questions. It favours those who can just run back into the shop for that item they forgot. It favours those who look and present as normal, and that’s not good enough.

I apologise for the way people speak about those with disabilities. We are selfish and cruel. We do not ask you what you want or how you feel.

I apologise for the governments who refuse to admit that they do not do enough to help you. There’s few provisions for your physical health and wellbeing, let alone mental health. I am sorry we continue to elect these assholes.

I’m also sorry for how society tried to teach me that somehow, your disability was your fault. I saw examples of shunning and shaming and, luckily, had parents who were good at teaching me that this behaviour was wrong. I grew up with children in the playground who would insult someone with disableist slurs, and learned not to say anything.

I’m sorry I never understood better.

 

Trust me, now I will say something.

 

I am, however, lucky that I have been around parents who wanted to teach me right. I am lucky that they hate discrimination and prejudice. My aunt who has ME is in a wheelchair for we need to go somewhere that requires her to walk a long distance, and I’ve watched her own situations where she could have been really upset. Instead, she’s flipped them on their heads and demonstrated that she can boss this situation.

I promise I will speak up whenever I see an idiot in a disabled parking space. I promise to always address the person in the wheelchair. I promise to get angry when someone blocks the access ramp with a badly-placed item.

Most of all? I promise to listen.