Tag Archives: Frustration

Sightloss stress and depression

Did you know that 1 in 4 people suffer from a mental illness?
Were you aware that there is a positive correlation between sight loss and depression?
I’ve been diagnosed as clinically depressed since 2015
Through the support of my partner Gary and my GP, I sat and talked candidly about my erratic mood swings, lack of energy, motivation and my constant exhaustion.
We talked at length about my symptoms and the options available to me.
I opted to go on antidepressants as I have previously had counseling.

Antidepressants aren’t for everyone, and that’s ok. However for me they have been invaluable; they have improved all the symptoms I mentioned above, and most importantly for me it’s helped me focus on the bigger picture.

My deterioration in vision since the age of 14 has been a source of vexation and frustration for me.
I hated relinquishing control, having to ask friends and family for help, needing things like worksheets adapted and continuous hospital appointments.

I just wanted to be normal.

But I wasn’t.

I walked into people and inanimate objects, I would knock things over, not be able to read anything without a magnifying glass and so many other things.

I’ve always been a perfectionist so asking for help or embarrassing myself publicly always sent me into a spiral of stress.

Over the years this stress manifested into rage and because of this I pushed people away, or, pushed them to their breaking point.

At the time I genuinely believed my outbursts were justified and acceptable. I believed I had to fight: fight for support, fight to be heard and fight to prove myself.

There was always a reason, an excuse, a situation. I couldn’t see that my behavior, thought processes and even actions were out of control.

It wasn’t until I was at University studying psychology and having a truly fantastic network of friends around me that i recognised all of my grievances and anger were due to me losing my sight.
I still had my moments but they were few and far between..I would get riled up by the little things; dropping something on the floor and spending 5 minutes looking for it, tripping up kerbs or spilling my drink. everywhere.

I learned to laugh it off. Reminding myself that in the grand scheme of things they really weren’t such a big deal.

Yet as my sight deteriorated further and these menial things seemed to happen more frequently I realised I needed some support.

And that’s when I rang the RNIB counseling support line, and registered myself on the waiting list.

I wanted to talk through my problems, how to acknowledge my frustrations but not let it control me.
I wanted to know how I would manage with my impending sight loss and what techniques I could use to make my life and mental state healthier.

The waiting list was so long that by the time my first counseling session happened, I had already lost my remaining vision.

My counselor was fantastic,although I had lost my sight, and the worst had happened to me, she listened, emmpathised and talked through my anxieties and frustrations with me.

The counseling was invaluable to me and it wasn’t until the beginning of 2015 Depression decided to rear it’s ugly head again.
It took me a long time to acknowledge that I was changing and becoming angry all over again. It was always the small things: walking into doorways, pouring the kettle and missing my cup, dirty dishes and not noticing I wasn’t holding my cup straight so hot tea spilled over me and my interiors.

All those little things added up to one big thing: dealing with my sight loss.
This is why I started antidepressants,I was chemically imbalanced, so why not try chemicals to restore my balance?

I still have my down days, and that’s ok. It’s about acknowledging my stress levels and doing something about it.

Here are some ways I cope with stress:

  • Try your best to realise when you are in the midst of an angry outburst or thoughts.
  • Allow emotions to be present. Cry, scream, shout, But not at anyone. Be present in acknowledging the feelings, but don’t let them take over.
  • Don’t use expletives or negativity when expressing these thoughts.
  • Breathe deeply, and think only of what your breathing is doing.
  • Read up on mindfulness, and try putting it into practice.
  • Listen to music. Blast out one of your happy songs,
  • Distract yourself by making yourself focus on something small.
  • Exercise, it releases endorphins.
  • Text/ call someone. you care about.
  • Find a task that needs a lot of focus and thoughtfulness. Maybe like writing a blog post? 🙂
  • Watch something funny.
  • Make some tea, and enjoy the 10 minutes to sit and drink it.
  • Think of something positive. What are you proud of?
  • What are your passions? Find them and emerge yourself within them.
  • Smile! Yes, forcing yourself to actively smile, actually lifts your mood.

Constant stress can lead to depression so make sure self care is at the top of your priority list.
Depression is an illness, a brutal thought process that truly can take over your body and mind. It’s nothing to be ashamed of.
Establish your stressors and find a way to combat them.Only you know your triggers and only you can save yourself from stress.

Think positive, stay positive! 🙂

The Last Leg

“Sleep is for the weak!” I screamed as the hospital ward lights flickered on.

OK i’m joking. I was extremely tired and the combination of excruciating pain, and the constant need for the bathroom didn’t allow me any quality of sleep.

I was fed, washed and dressed waiting for the Doctor to arrive. He came over and asked all the usual Doctor questions. I explained my blood pressure cuff analogy to him and said that the pain had worsened the longer I had the cast on.
He was very friendly and supportive, even saying he would take my cast off to examine my leg. But as he did not perform the surgery, and wasn’t my Doctor, he had to wait to speak to a Consultant to see what to do.

Not too long after, my nurse came over and said he’d heard I had been uncomfortable all night, and I was complaining about the pain in my leg; to which I agreed.

“It sounds to me like your cast is too tight, let me go get some scissors and i’ll cut it off for you.”

The relief was evident on my now smiling face!

It took Rich, my nurse, a while, but he managed to cut the cast all the way down to the top of my ankle.
The relief was almost instant, my leg was on fire and heavily pulsing, but I actually managed to feel the blood pumping around my leg.

After a serious dose of medication and about half an hour later, I could feel my leg again, and not just agonising pain!

The Doctor came back not too long after and asked how the pain was, he was surprised to hear how drastically my pain scale had reduced.

“My ankle still feels really tight and sore, but it’s like my leg is able to breathe again.”

Rich, my nurse, was with me at this point and the Doctor said there and then to cut the cast off completely, the cast was obviously too tight and I should be fitted with a brace and not another cast.

You would have thought i’d just won the lottery with that comment, I was so ecstatic and relieved at the same time!

Again, as he was cutting the cast off my foot, I could feel the blood beginning to move freely around.

My entire leg was massively swollen, but the tight pain had almost fully disappeared!

Unfortunately it seemed like the surgeon, Doctors and nurses had not taken into consideration my Arthritis.
Whenever I have had a knock or bump to my body in the past, my Arthritis tends to balloon. So the combination of my accident and surgery on my leg, my joints were bound to become inflamed; specifically my knee and ankle.

And that was exactly what happened…

My leg had doubled in size… Couple that with an extremely tight cast and you’ve got a lot of pain through lack of circulation.

First brace given black with foam pads as support and Velcro straps leg is extremely bruised and swollen

I trust Doctors, after all they are the one’s who went to medical school, but i’m an advocate for no-one knows your body better than you do. I’ve lived with chronic pain since the age of 7, so I know the difference between normal pain, and abnormal pain.
*****

Leg with 17 stables closing two long cuts down the right side of the leg

With each day that came and went my leg pain decreased, I owe a special thanks to my friend Oramorph for helping me with my pain relief!

Those first few days on Oramorph were certainly interesting, I was a little woozy, mostly sleepy and my brain felt like it was trudging through sludge… it even got to the point that I declared to the occupational therapist that if nothing was going to happen over the weekend then I was just going to go home and come back Monday – until my friend kindly pointed out that this was a hospital and they weren’t just going to look after my bed for me for the weekend until I decided to return!
When my brain and tongue finally engaged, I realised how ridiculous I sounded, and we had a good laugh at my expense! ;)*****

On a more serious note I did realise just how understaffed, overworked and underpaid the Nurses and Health Care Assistants actually are.

Some patients needed more support due to their age, physical restrictions and sometimes a combination of the two. It was eye opening to watch just how demanding some patients can be, and how in turn that has a domino effect on the rest of the ward and staff.
I also noticed the lack of financial funds that the NHS have on the ground and how that is impacting on patient care.
One particular lady was brought in because she had a fall and had broken her foot… She was also very elderly and suffered with Alzheimer’s

It was heartbreaking to watch her in such distress asking where she was, what had happened, where her parents were as they would be getting worried about her and the why couldn’t she go home?
When she first arrived she had one on one support from a nurse, but that didn’t last very long as the nurse had other patients and duties to attend.
It was awful to bare witness to her on a continuous loop, that turned into hysteria when nurses couldn’t be present to talk to her and soothe her.

When the nurses weren’t around I tried to engage her in conversation as best I could, going through the motions of answering her questions. At some points she and I had conversations about her life and the odd time she was even lucid for a few minutes, so it was lovely.

However being witness to this happening over a few days on one ward I am saddened that there not are specific wards for such patients who need that extra care, support and attention.
Unfortunately this wasn’t the only patient I saw this happening with. I moved wards on Saturday around midnight and there was a similar case with another elderly lady.
Thankfully this ward was much smaller and quieter so nurses and HCA’s could give more attention to her. However, other patients such as my neighbour and myself were forgotten on several occasions.
I blame the Government for these situations, not the Doctor’s,Nurses and HCA’s on the ground. But it’s plain to see that even being in a first world country, patients still aren’t getting the full care and attention they truly need.

*****

New black brace with soft padded supports and clear plastic dial.

Leg without staples or brace on, 2 long cuts with visible staple holes and scabbing

I’m grateful to both hospitals for the care and treatment I received because without them I wouldn’t be at home recovering, trying to live a normal a life as possible as a one legged, blind short arse can 🙂

It’s not been plain sailing; lack of medication, supportive equipment, medical appointments and staples being in my leg 3 weeks longer than they should have been haven’t made my recovery easy but it’s been just over a month since my operation, so i’ve only got 8 weeks left to go!! 🙂
****
It was lovely to bump into you Becca, and meet you Eileen, i’m just sorry it was in such crappy circumstances!
I hope your recovery is going well and you’re kicking butt 😉

Much love,
Sassy x




Me, My Operation and I

I had a call Tuesday morning to let me know that my surgery would be the next day, no eating or drinking anything after midnight, I needed to arrive by 07:00 and I would be told where on the list I was for my operation.

Gary and I managed to get lost; we rocked up to the reception desk to ask for directions, unfortunately the lady sent us off in the completely wrong direction and we ended up on the surgical ward… Through the use of a map and correct directions from the nurses we finally found the right building!

We were told that I was the first patient on the surgery list, woohoo! We filled out the last remaining paperwork, and I got dressed into my gown and stockings, I looked very fetching I must say!
I was wheeled into a waiting area and left their for about 5 minutes before the anaesthetist came to get me. Gary came in with me and we met Mr Khan, the surgeon doing my operation.
It was the first time since my accident that i fully knew what had happened: I had a displaced fracture of my Tibia and Fibula; they had crossed over each other, and my Patella had shattered and fragments were floating about in my knee.
Mr Khan would be putting in metal plates, screws, rods and wires along with artificial bone to reconstruct the knee. Without complications this would take around 3 hours.

He explained that this was a very serious fracture and a complex operation; I tried to crack a joke but he just stayed stoney faced, awkward turtle moment right there!
Mr Khan also stressed to me that because of the trauma to my leg I would now have OsteoArthritis in the knee for the rest of my life.
*Lucky me; now i’ll have 2 types of Arthritis! I don’t do things in halves do i?* 😉
The anaesthetist was very chirpy and friendly, we were cracking jokes while i asked him how long he’d been an anaesthetist?

Ct scan of a fractured Knee, the knee is displaced and splintered into 3 parts.

Gary was very nervous and worried as this was the first time he has ever been to theatre before, I could tell, and tried to be enthusiastic and show I was relaxed.
I told him to give me a kiss and that I loved him, then I settled and said it’s fuzzy i’ll be asleep any second.

The anaesthetist was very kind, taking my oxygen mask off so Gary could kiss me one more time, at this point i’d already drifted off…

*****

I came round from the anaesthetic in the recovery suite, The room was big, bright, air-conditioned and I had a monitor strapped to me checking my OBs. There was the hum of the machines and the bubble of nurses chattering.
I started to wave my arm; being blind and having a dry throat it was the most logical way to get their attention. A second or so later, a nurse came across and asked how I was? There was a lot of head nodding and thumbs up, I was too woozy to talk.

And then the pain hit… *Wow this is really uncomfortable! But I guess this is normal?*
“Could I have some painkillers please?”
“Yes of course, what’s your pain-scale like, 1 being good and 10 being awful?”
“7,,71/2”

The more time passed, the more and more uncomfortable I became. It didn’t help that I was getting hot and sweaty and my nose was extremely itchy, I kept having to take my oxygen mask off, itch my nose and fiddle about with it to try and put it back over my face.Finally the nurse noticed the muddle I was getting myself in trying to put my mask back on and offer to put the line up my nose instead. The relief was almost instant, I started to cool down and my nose was less itchy!

I kept asking for more and more painkillers, each time my ranking rating higher than the last time.
“The pain really should be subsiding by now, where is the pain?”
“My leg.” “It’s like I can’t feel the circulation, my leg feels like it has 3 blood pressure cuffs on it at the same time.”
“It is normal to have leg pain after surgery, and they do tend to wrap it quite tight to stop swelling.”
“But this doesn’t feel normal.”
“Wiggle your toes for me,can you feel me touching your foot?”
“Yes.
“You’ve got full circulation, your leg should settle down soon, i’ll give you a little bit more morphine before we take you upstairs.”
“Yes please.””Can you call Gary please?”
*I need a wee, i’ll just think of that instead of the pain…*

***

“OK Sassy we’re ready to take you to the ward now.”
“OK good, is Gary there?”
“Yes he’ll be waiting for you on the ward.”
“Thanks for your help, bye, have a good day.
“You’re very cheery for someone who is recovering from surgery!”
“Am I, hmmm maybeI am!”

I just laid back and tried to relax and the porters took me to the ward.

“Sorry, she can’t be on this ward, we’re full.”
“Oh, they told us to bring her here.”
“Well i’m sorry, I don’t know why they would, they know we are full.”
Sorry about this Sassy.”
*Oh but I need a wee*
Hey, I have a bed, i’m fine.”

Back to the recovery suite…

“We have to wait here until they have a space for her on another ward.”
“Oh right, let me ring around and find out what’s happening.”
“How long am I staying here for? Can I have some more painkillers?”
“I’m not sure Sassy it shouldn’t be too long. And we can’t give you any more i’m afraid.”
*It’ll be good to finally be on a ward so I can go for a wee*

I didn’t have to wait too long.

“OK Sassy, you’ve got a space on the ward now.”
“Yay, is Gary there?”
“Yes he should be.”
“Oh good!”

***
X-ray of fractured knee in which you can see the bone cracked and displaced.

Small talk between Gary and I and the nurse introducing herself to me…

“On a scale of 1-10 how much pain are you in?”
“9, 91/2.”
“That’s pretty high…”
“Yes it’s been getting worse as time passes.” “Can I have some morphine please.”
“You’ll have to wait a while, we don’t have your notes yet.”
“Oh god I really need painkillers! I need to stretch my leg”
“I’m sorry there isn’t anything I can do until your notes arrive.”
“Oh my god! It’s like 3 blood pressure cuffs on my leg at once! This is agony!!”
“I need to stand up.”
“No you can’t stand up.”
“NO I NEED to stand up!.”
“No sorry I can’t let you do that i’m sorry, you’ve just had major surgery and I need to look after you.”
“Well let me stand up, it’s the only thing that helps, i’ve been having this pain at home but it’s intensified!”
“You’re not allowed to stand up and i’m not going to let you.”
*OK I officially dislike this woman, get her out my face*
“Can you go see if i’m allowed morphine yet?”
“Yes, I can go do that “

“Right she’s gone, help me get out of this bed.”
Long pause…

“Sassy you heard what she said.”
“Get me out of this bed now!!
*Gary doesn’t move but I do*
“I need to stand up, just for a minute. It’ll help release the pain, I know it will.”
“I’ve been explaining this pain to you over the last few days, and it’s completely intensified,why aren’t you listening to me?”
“I don’t want you to get hurt, or damage your leg.”
“I’m not going to get hurt, I just need to sit in the chair and pull myself up, and I won’t be putting weight on my leg.”
*Gary helps me get into the chair.
As I stand up, i’m in absolute agony, and have to breathe hard to not cry out.
Although it’s agony, it’s doing what I thought it would, and pushes the blood around my leg. The pain although intense starts to steady itself.
Once i’ve done all I can to release the pressure I move back onto the bed*
“I’ve got some morphine for you.”
“Thanks, can I go to the toilet please?
“You’re not allowed to weight-bare, but i’ll get you a bedpan.”
“What if you push me in a wheelchair?”
“”No, i’m not allowed to do that.”
“OK, i’ll have a bedpan then.”
At least 5 minutes pass…”I really need a wee, where is she?”
“I don’t know…”
“Can you check?”
“She’s with someone else at the moment.”
“Oh great, I hope I don’t wee myself!”
“OK, I have the bed pan, if you could just roll onto your side.”

I had already lifted my backside up and started pulling at y gown.
“Just lie down for me.”
“Oh, this is how i was doing it in the other hospital it’s easier for me.”

Fumbling with gown and getting frustrated

“Gary take this stupid gown off me.”
“Let me lower the bed for you.”
“No I don’t need it lowered?”

Gary undoing gown.

“Here, let me help you.”
“Please can you just leave us to it, I want this gown off and don’t feel comfortable getting naked in front of you.”
“It’s OK i’m here to help you.”
“Well I don’t want your help, can you leave please?””

She reluctantly exits the cubicle but constantly sticks her head in.

“Can you just leave me to it, you’re distracting me and I can’t concentrate”
“I need to make sure you’re OK.”
“My partner is with me, i’m OK.”

*This woman is absolutely useless, I don’t like her*

Even though i’m ready to burst, I sit there and, nothing…

“Have you gone yet?”
“No.”

Still nothing…

“How are you getting on?”
“I can’t wee…”
“Can I come in?”
“No.”

She comes in anyway…

“So you still haven’t been? You’ve been sat there over 10 minutes…”
“Can you just get out please?
“I just want to help you.”
“Just get out!!”
“There’s no need to be so rude!”
“Well you asked if you could come in and I said no! I need to do this in my own time stop hovering over me.”

Finally she leaves…

Still nothing…

Nope, nothing.
I try everything pushing, prodding, wiggling, and even getting Gary to rub my back with no avail.

Finally an hour later…

The tiniest trickle happens!!

“What?! I’ve been waiting all that time for that??”

But the relief is insurmountable.
*****

Right leg in a white cast from ankle to thigh

Lots of love, medication and a sandwich later, i’m finally relaxing as best I can.

The nurses do a change over, and it’s time for Gary to leave.
We say our goodnights and he helps me settle for the evening. I apologise for the outbursts and severe grumpiness, he accepts my apology and says he can tell how much pain i am in.

I didn’t get much sleep that night, mostly to do with the pain, but mores because my bladder decided to kick in and I couldn’t stop peeing like a racehorse until breakfast the next morning!




Please stay tuned for the final instalment of my accident and the chaos that ensues… 😉

Anger Is The Sheild, Depression Is The Dagger

As depression rears it’s ugly head I am left with 2 choices; let it control me, or try my best to control it.
I’ve noticed patterns in my behaviour of late that used to smother me like the heat of a sauna. But this time i’m aware and ready to fight back.

I have one gigantic trigger: my sight loss.
That’s where it all began.
That’s where it all stems from.
But it’s slightly different this time. This time I think it’s a chemical imbalance. I have come off my anti depressants.
When I was put on them, I was given a 6 month course, but I kept cashing in more prescriptions as I didn’t feel ready.
But I decided that enough was enough, I wanted to at least try.
I couldn’t tell you the exact date I stopped taking them, because I didn’t want the placebo effect hitting me like a tonne of bricks, as well as the potential chemical imbalance I was going to be facing.

I’m not saying i’ve been perfect since coming off my anti depressants.I had a few down days, some of which lasted longer than others.

But the slap you in the face moment happened early morning last week.

I was sorting out breakfast for Gary and i; firstly I spilt the water all over the sides (actually not uncommon as we have a shite kettle!), and then I started putting away the dishes from the night before. and almost every dish I pulled out was dirty.

I lost my shit and started raging at Gary.

He came over to me.; told me to put the dishes down, and not to worry, it was only dirty dishes.

“Only dirty dishes?! I spent fucking ages washing those dishes, and yet they have shit all over them!!!
What’s the point of me washing them if they aren’t going to be clean?!”

At this point Gary enveloped me in a big hug, and rubbed my back soothingly.
” It’s just dishes Sassy, it’s OK.”

I wanted to shout again, but his calming presence soothed me. Right there and then I knew this was my not so friendly friend depression.

This is the point where I admitted to Gary I hadn’t taken my happy pills in a while, because I wanted to come off them.
He had his reservations about me just stopping them, but said he’d support me in whatever I chose.

I think he or I made a joke about the crazy train starting it’s journey again.
I have to point out here, that a lot of our relationship revolves around,lots of dark humour, which other people would find unnerving or offensive. But that is how we deal with things 🙂

When Gary had left for work, I got on the phone to the Tribal ladies and confessed my psycho bitch fit.

They too were also very supportive, giving me suggestions, virtual hugs and kind thoughts.
In all honesty I was truly embarrassed at my outburst, and sad that it had happened, and I knew in order to deal with it, I had to be honest with the people I care about, and not try and hide it/ palm it off like I used to.

That same morning, a new member of the family arrived into this world, and it instantly lifted my mood.

Being open and honest with Gary, my friends, and myself as well as hearing happy news gave me the oomph to realise I HAVE to focus on the positives, but be honest with myself and others if things are going downhill.

So, how am I going to try and keep my psycho bitch fits at bay?
*Try your best to realise when you are in the midst of an angry outburst or thoughts,. Feeling incredibly numb and withdrawn.

*Breathe deeply, and think only of what your breathing is doing.

*Go cuddle Gary. 🙂

*Talk to Gary, he’s bound to say something to cheer you up.

.*Read up on mindfulness, and try and put it into practise, when not in a low mood. It will get you better equipped for when you need to do it.

*Listen to music. Blasting out one of your happy songs, and squawking terribly along with it, always helps improve your mood.

*Distract yourself by making yourself focus on something trivial/ insignificant.

*Do exercise, I’ve almost forgotten how this word is spelt, never mind said… it’s been so long!

*Text/ call someone. Even if they aren’t free to talk at that moment,writing it down will help to clear your mind.

*Don’t use expletives or negativity when expressing these thoughts. That always gets you ramped up even more.

*Find a task that needs a lot of focus and thoughtfulness. Maybe like writing a blog post? 🙂

*Watch something funny. Stand Up always makes you laugh!

*Make some tea, and enjoy the 10 minutes to sit and drink it.

*Think of something positive. You know, like you’ve been shortlisted for the UK’s most prestigious blogging awards!

*Smile. Yep, forcing yourself to actively smile, actually lifts your mood.

*Allow emotions to be present. Cry, scream, shout, But not at anyone. Be present in acknowledging the feelings, but don’t let them take over.

*If all else fails, and you are at home: SLEEP. That will shut the stressy bitch up, and hopefully it’ll improve your looks! Beauty sleep and all that 😉

*Last, but no means least. Read this blog post, and remind yourself, the train to crazy town has already departed… No point trying to chase it now! 🙂

*****

As you can probably guess, this is a list from me, to me. I now have something officially in writing to come back to if necessary.

*****

Depression is an illness, a brutal thought process that truly can take over your body and mind. It’s nothing to be ashamed of.
I chose to take myself off anti depressants, because I want to. And see where mindfulness and positive thinking will get me.
If I need counselling or to go back on them, I will.
Admitting you need help is never a weakness. actually it’s the complete opposite!

My way may not work for everyone, it might not even work for me. But as I feel that I truly am in the happiest place i’ve ever been in my life, I want to see if I can channel that positivity into my daily living, instead of relying on my happy pills.
I will know within myself if it’s an emotional anchor, and not a chemical imbalance anymore.

*****

Since I began this blog I always said I would be truthful with myself, and give my readers that honesty.
Being able to talk openly about all disabilities candidly is my goal.
If I want people to accept disability as another entity, and not a thing that should be shunned or silenced, then I need to show my true colours. That way I feel I am doing the right thing.

If you are not in the best place right now, reach out to someone, or write down your feelings.

You are never truly alone, even if it feels like it.
Big hugs to you all 🙂

❤️ If you enjoy my ramblings, and think for one crazy second, that somehow I deserve to become a finalist in the prestigious Brilliance In Blogging Awards (BiBs) I would love your vote!
Simply click this button below and it will take you straight there!
All you need to do is put:
Your Name
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Thinking Out Loud, in the category of INSPIRE
Please and thank you.
you wonderful human being! ❤️

BritMums

Much love, Sassy x


Embrace The Cane

Embrace The Cane!

Last week I filled out the fab VIP Daily living tag. Created by Holly and Elle and Within this tag a question I answered I talked about how I embraced my cane after feeling self conscious.

I also have been talking to a lovely guy, and a similar conversation arose so I thought I would give a more in-depth story of how I embraced my cane.

I first had cane training lessons when I attended a specialised college for the blind. My sight was deteriorating, and after speaking with my Mum about it, she suggested getting in touch with the mobility department and asking for cane training encase I needed to use one in the future.
And that’s what I did.

In my free periods, I would have cane training with a mobility teacher, she was very patient with me; knowing how much I despised the thought of using a cane, I saw it as an embarrassment, and a way to draw unwanted attention to myself.
I used to cringe when having to use the cane on campus, and about in public.

The specialist college that I went to had a large number of visually impaired people who were mainstreamed in high school, and they didn’t use a cane, the majority of these people, like myself, felt confident without a cane and just saw it as a nuisance. So for the whole time of my college years myself and others who were visually impaired did not use a cane. And as horrible as it sounds, I actually believed that I would get mocked and sneered at if I were to admit I was taking these lessons.

I was in a juxtaposition with myself; I didn’t want to learn to use a cane, because that meant there was a possibility I would need to actually use it, but when I was out with my mobility teacher and it was just she and I, I felt more relaxed and wanted to conquer it. I was eager to learn and get things right, and would constantly chastise myself when my swing was out of time with my footing. (I am a left handed cane user; so as I step out with my right foot, my cane swings across my body to protect that side from being caught by an obstacle).She taught me how to swing in step, how to go up and down stairs and how to cross a road safely and properly as a cane user. By the time I left the college, I felt confident that I could actually use a cane if ever I needed to.

*********

The first time I used the cane was about a month before I lost my sight completely. Again, I admitted to my Mum how hard it was to get around, how I felt scared a lot of the time and would ask people to come with me somewhere, or guide me whenever we were together.
I would see bollards or wheelie bins at the last possible second, and on a few occasions, it was too late and I got a bruising from inanimate objects. Likewise, I would jump out of my skin and sop dead thinking there was an obstacle in my path, but there was nothing there.

I was constantly nervous leaving my home, and avoiding doing so at all costs unless I was assisted. I was losing my independence and I hated it.
I said to my Mum that when I came home for the summer, I would conquer my embarrassment of the cane and use it, because I knew it was time I used it. I was becoming a danger to myself, and potentially others.
Mum agreed.

Note to self: don’t tell Mum anything!
Mum tells the entire family i’ve decided to use my cane after all these years! “Even though she should have been using it years ago!”!

Every time I went to leave the house: “Sassy are you going to take your cane?”

*Hates self for telling Mother about the cane*

“No, I don’t need to., it’s really sunny out and I know this town like the back of my hand.”

A few days of this conversation happening…… Mother had asked me to go to the shop and get some bits, knowing I would struggle finding the items and the stress of it all I waited until my Sister got home from school and asked her to come with me.

“Yes. But only if you take your cane.”

“Francis don’t tell me what to do, i’ll use my cane when I need to!”
“Well i’m not taking you to the shops then, Sassy you said to Mum weeks ago that you know your sight is too bad to not use it, and that you know it’ll help you not only get around safely, but it will allow people to see that you can see them and not just being ignorant!”

*Fuming at my little Sister for telling me what to do, and showing sense*

“Fine! Let me go change.”

“Go change? It’s really warm outside Sassy, what are you on about?”

I’ll be back in a second!””

“Why the hell are you wearing a hoody?”

“So I can wear my hood up.”

“What? Why?”

“So people can’t see me.”

“Sassy you’re wearing a bright pink jumper with your hood up in summer, people are going to notice you, regardless of the cane!”

“Just shut up and let me do what I want!”

*All the way down to the shops*

*Oh god this is so embarrassing, see I knew people would be staring. I hate this so much*
“Sassy you look so stupid. Put your hood down.”

“No!”

“Put your hood down and your head up, everyone knows you’re blind anyway. It’s pretty obvious who you are !”

By the time we got home Mother was already back.

“Why are you wearing a jumper, and with the hood up?”

“So I can hide.”

*Mother just laughs and listens to Francis retail the scenario. While I stalk off*

From then it became a bit more of a frequent occurrence, if I left the house I would take it. Still under duress I will say! But I used it more often, still deliberately leaving it behind if I could get away with it!

********

The day I lost my sight, and actually realised I couldn’t see I kept thinking thank god I brought the cane!

I left the hospital with my Parents and embraced this ugly duckling, that had transformed into the beautiful white Swan before my eyes. Figuratively speaking of course! 😉

In the strangest of ways losing my sight, opened my eyes to the independence I could now have with this ugly white metal object.
Because I couldn’t see people watching me, or staring, they didn’t exist.

The cane became MY cane: my aid, my ally and an extension of me.
And from then, on I’ve never looked back! 🙂

I hope you liked my story 🙂

Have you ever felt in a situation similar to mine? Or as a cane user can you relate to my story?

I’d love to hear from you in the comments below! 🙂




Much love, Sassy x

Disability Q&A Interview #2 Florian Beijers

Disability Q&A Interview.
Interview.

This is the second instalment of the Disability Q&A Campaign,. Today we are meeting Florian, a fantastic guy who I met by chance after he commented on a controversial blog post I wrote back in January . Florian is an intelligent and interesting guy. I hope you love his interview as much as I did!

Tell me about yourself:
Hi, i’m Florian Beijers, i’m 23 and live in The Netherlands. I am a Part-time student, part-time programmer and full-time geek! I enjoy listening, playing, composing and producing music. I also enjoy working with spoken languages.

Now we know the basics, can we learn a bit more about you?

What is the medical reason you have a disability?

Scar tissue obscuring the optical nerve’s entry point to the brain, or so I have been told.
Have you had your Visual impairment / disability from birth?

Yep

Which terminology do you prefer: Partially Sighted, Visually Impaired, Sight
Impaired, Severely Sight Impaired or Blind?

I tend to say blind myself, I think you should say it like it is and not make up a fancy name for it. Technically I am not blind; I still have some light perception; but still, I’m blind enough to be blind.

Do you have a cane, Guide Dog or neither?

I have a cane, but am waiting on a guide dog as we speak.

If you could extinguish your disability, would you?

It’s funny how you worded this question, you nulled my usual answer to this question by using disability instead of impairment. Had you said impairment, I could have said that being blind doesn’t really impair me at all,

. I can do what I want to do, barely have any hindering from my blindness, and honestly, I’m fine with things the way they are now.

For those who do not know much about your VI what can you see?

I see light. It’s bizarre, I can sort of gage it’s intensity but discern it’s colour, shape etc. it’s too shapeless for that… It’s hard to explain, since light is pretty much always of a particular color. Not for me.

How has your disability effected you?

It hasn’t in the sense that I have changed because of it, simply because it has always been an integral part of my personality. As I stated above, I don’t really see my disability, for lack of a better word, as a limiting factor or obstruction I have to work around. I’d rather say its some kind of physical characteristic, like blonde hair and blue eyes. Would I have lived differently if I hadn’t been born blind? I have no clue whatsoever. Others, however, do not always share this sentiment, see below.
*Socially Blindness, to most, is strange. People don’t understand, and man fears what he does not understand. Therefore this does lead to some apprehension in some social circles. However, I have always tried to bulldoze through these initial obstructions with a smile or a joke. Be confident and others will quickly see you’re not so strange after all. The more attention you pay to your disability, the more others will as well. It is a vicious circle that is hard to break out of, but once you manage it it will dramatically decrease this ever-present tension when meeting new people
*physically: A lot of sports are sadly closed to me. Also, a lot of the blind-specific sports like Goalball and Showdown aren’t really practiced nearby, which means getting to practices is tedious and often not possible due to time constraints or other practical reasons. I therefore work out less than I think I should, and sitting behind a computer desk all day doesn’t help either. I tend to do in0house exercises (sit-ups, push-ups, weightlifting, running in place) etc. with varying amounts of success. Doing this on your own does get boring though.
*Mentally: Honestly, it doesn’t affect me mentally at this point. That used to be different, I was very apprehensive of learning new routes and asking for help. Basically, stepping out of my comfort zone since my environment discouraged me from all sides in that regard due to my handicap. Again, this is more of how my handicap affected my environment than myself though. I did manage to break out of this when deciding to move out and to live independently, someting I am happy about now.

Do you think your disability has made you who you are today?

I think it has given me a reason to grow a backbone, among other things. The example of not judging people by their appearance is apt, as well.

Is there a particular question you get asked often because of your
disability?

I get asked many questions, usually, to do with tech by fellow students.
Also often I get asked if I dream, and how I dream.
Which has some interesting scientific roots: Dreams consist of impressions from all senses, therefore you hear, smell, see and touch things in dreams.
For a blind person blind from birth, the visual elements simply cannot exist since no visual impressions were ever experienced. It’s like trying to develop pictures without having taken the pictures first.

What are the positives of having a disability?

People very often underestimate you. I tend to use those incidents to play a joke or teach a quick lesson, often both at the same time, educating the masses one by one. It’s somehow sad that I can still get away with that in 2016.

What are the negatives of having a disability?

The positives I just mentioned are a double-edged sword. I often have to change peoples mindsets before I can work with them properly, this is often the case with teachers, colleagues etc.

What would you say is a difficulty for you being VI / disabled?

Tricky one, I guess doing groceries can be a pain to do on your own, especially if you’re curious about things like expiration dates and preparation instructions.

As a person with a disability, what are the things you face on a daily /
weekly basis that frustrate you?

*In your home: mail, I tend to ignore it until I have no other choice but to read it.
*outside your home: Pavements that have all kinds of objects haphazardly placed on top of them, making me have to Super Mario my way from my house. For example, getting to the train station, obstacles in my path which prevent me from walking as fast as I want to sometimes.

Are there any tips or tricks you use in daily life you’d like to pass on to
another VI/ disabled person?

Yes, one. Don’t be awkward. As I pointed it out earlier,it really is an important thing. The more awkward you feel, the more awkward you will be treated. Try to blend in a little, act if you have to at first. You’ll find people tried you like a person rather than a zoo animal way more often that way.
*Keeping socks paired in the washing machine? Honestly I always say I am going to do that and promptly forget about it the day after.
*Colour coordinating your clothes Nah, just wear a lot of trousers! 😉
*Applying make up? yeah …not the person to ask

Do you use Assisstive technology in your daily living?
*
I use Screen readers to navigate my way around computers and phones etc, I use NVDA on Windows, and VoiceOver on my iPhone, and Talkback on Android.
*Braille note? No, I think these devices are antiquated and should be phased out except for people who really, really can’t use, or get to grips with a smartphone with an inexpensive braille display.
*Colour detector? I detect colours through an app, sometimes.
*Talking scales? Yes. One for me, and one for measuring the dog food once the guide dog wait is over!
*Liquid leveler? No, I can’t stand the things. You get a feel for it after doing without for a while.
*Apps? I use a GPS tracker called BlindSuare and ViaOptaNav, usually

What piece of advice would you give to someone newly diagnosed? Or going
through a deterioration in vision / or mobility?

You can’t start too early in learning to do things non-visually. Being ridiculed is a genuine problem; I won’t coddle you and lie about that; but especially if you’re blind you’ll have to learn to do these things without sight some time anyway, might as well do it sooner or later. This is your new reality now …and , although it may be harsh, you have to show your human capacity to adapt as soon as possible.

Any advice you’d like to give to a person with sight / no disabilities?

Look past the impairment. There’s more to us than you can see at first glance. And yes, that was a pun. And yes, it was quite fully intended.

Did you seek out any specialist services / charities to help you and your
family deal with your situation?

I did not. My family did, until a number of years ago when I decided I’d rather learn things on my own terms.
*RNIB Schools? I did special education 6h grade.
RNIB Catalogue? Yes.

Where can people find you out in the world?

Blog:
Here IIRC
*
YouTube: florianbeij
FaceBook:
www.facebook.com/florianbeij
Twitter:
www.twitter.com/zersiax
Google+:
honestly can’t remember, I never use the thing.
LinkedIn:
Just google me, i’ll be one of the first results.
Email:
florianbeijers@gmail.com 🙂

Anything you’d like to add my lovely?
Nope, that should be it 🙂 🙂

Thank you for giving us such a fantastic insight into your life living with a disability, I hope this has given people further depth into you as a person, as well as how you live and manage your Visual Impairment!




Please don’t forget to check out all of Florians’ social media above! ^^^

If you, or anyone you know would like to participate in this campaign, raising awareness of all disabilities, please do not hesitate to contact me on the following:

Email:
SassysWorld6@gmail.com

Twitter:
www.twitter.com/sassypant6 using the hashtag DisabilityQ&A

Facebook:
www.facebook.com/thinkingoutloudblog

Challenges of Being Disabled: The Social Side.

Social Challenges.
As a wheelchair user: The social challenges i’ve faced have been constant. People continually stared when I was in public. Strangely it was adults that were the worst. Children stopped and stared and asked inquisitive questions, which I could handle, and if I was in talking distance I explained that I couldn’t walk very far, and it was very painful to do so. Adults on the other hand stared and pointed me out to their friends. After time my Mother used to get angry at these people and shout

“Take a picture it’ll last longer!”

At that point the adults became embarrassed and looked away.

People frequently would walk in front of the wheelchair and either stop dead to stare or jump out of the way dramatically just in time. Comical for the first few times but after years of it, it gets very annoying.
People insisted on talking to my Mother or anyone else who happened to be pushing me at the time. It is a strange misconception that people who happen to use a wheelchair, have other disabilities or learning impairments. When this happened my Mother would say:

“She does have a tongue in her head, and knows how to use it.”
Adults would talk to me as if I were 2/3 years old, or bend down to talk to me so they could be eye level. I found this extremely patronising and said on several occasions:

“I am a teenager, not a baby!”

 

“I can see your face from where you were standing.”
As a long cane user:
Ignorance:

Over the last 2 years that I have been using a cane I have had very similar experiences with people stopping and staring, jumping out of the way at the last minute, and speaking to the person I might be with rather than addressing me directly. As I am much older and more mature I tend to ignore these incidents, and realise that I shouldn’t allow myself to get aggravated with these people as I can’t see them and i’m not likely to notice them ever again!
Children have asked their parents about my “white stick” and again if I am in talking distance, I explain that I cannot see things clearly, and the cane is there to let people know I cannot see.

New people:

My main social challenges are interacting with new people; whether that’s talking to staff in a shop or restaurant I feel awkward because 9/10 times I can feel the uneasiness of the other person interacting with me.I always look at the persons face but if I am staring at their mouth or their forehead when i’m talking it’s obvious to them I can’t actually see them standing in front of me and i believe it makes them feel awkward too.
Making new friends has also been a challenge for the same reasons mentioned above, but the way I see it *ahem pardon the pun* 😉 they aren’t worth my time if they can’t get past my visual impairment.
Buildings:

Finding new places/ buildings is a stressor to me, I have to plan a route and use a a SatNav application to reach my destination, and i’ve heard people laugh if I walk into objects/ walls.

Helpful people:

If people have seen me waiting to cross a road they have taken my arm without me asking, people have also picked up the end of my cane, or taken the cane completely off me to grab my hand to cross me over. With these incidents specifically I hadn’t necessarily noticed there was a person there as I was too busy concentrating on listening to the traffic and judging when it was safest to cross. I find it pretty bewildering and at some points stressful as they plonk me on the other side and walk off.Or most importantly they have taken the thing I need the most to aid me crossing the road safely, and sometimes it’s stunned and shocked me into silence.
My last social challenge was a sort of scary one; I was walking home from the local supermarket bags in hand, when I was approached by a guy who said hello, we chatted for a minute or two then I made my excuses to leave. The guy didn’t get the hint, and asked me for my number, saying how attractive I was. I explained I was flattered but I don’t give my number out to strangers. He was persistent saying he only wanted my number to be friends and chat, but I said I really must leave I’m meeting friends soon. I walked away. As I reached the top of the hill he came rushing up to me asking if I was meeting my friends in town, and if i needed a hand to get there. I politely declined but he continued to follow me, returning to our previous conversation about asking for my number and going on a date. At this point I was getting quite close to home and had to really insist I wasn’t interested, and I needed to go now. Eventually he stopped walking with me, to which I couldn’t be more happy about. I was close to my house, and knew I was safe, but I needed him to back off as I didn’t want to show him where I lived.

My heart was pounding as I got home, I knew deep down he wasn’t going to hurt me, he was just a guy trying his luck, but as a petite female who can’t see past her nose, I was genuinely worried he wouldn’t leave and therefore find out where I lived and potentially stalk me. Thank the gods that never happened!
I know some of you who are reading this might perceive my thoughts and reactions as rude and inappropriate, but if you could put yourself in my shoes for a day, you’d understand. I strive to be pleasant and polite when I am out and about, but it becomes frustrating and boring hearing, and seeing, the same things from the same people everyday. I think more needs to be done to educate children and adults on how to approach and speak to people with disabilities. The more we educate, the more we learn, and the more we can end the awkward surrounding disability!

I will also say that these are just my bad experiences of dealing with people interacting with me as a disabled person. I would like to input that from being in a wheelchair as a child and teenager, to becoming blind as an adult, my perceptions and attitudes towards people have changed, and I am far more reserved, and polite when interacting with new people. I attempt to be pleasant when out in public, and educate those around me, especially when children or adults have asked questions. I won’t stand for people patronising me or being ignorant, but the ways in which I will express it is in a mature manner, and diplomatically show them the errors of their ways. I’m not sure if it’s because I have a changed persona from my childhood, or I give people the benefit of the doubt now, but i’m very lucky that I have had far more happy, interesting and pleasant interactions and conversations with the public since I went blind.
If you’re worried about interacting with people with disabilities, check out SCOPE’s End The Awkward campaign 🙂
Thanks for reading, I know my posts can be pretty hefty. Feel free to comment below if you have any comments or questions on this weeks blog 🙂

Sassy x

Challenges of Being Disabled: The Emotional Side.

Emotional Challenges.

As a wheelchair user In a lot of ways my emotional challenges were probably typical of anyone with a disability who needed to use a wheelchair to continue with daily life. Although I was not completely immobile, the pain I suffered in my childhood was beyond anything I can put into words, so having a wheelchair was a large relief not just to my body but my mind too. Don’t get me wrong I definitely had my moments: stress, frustration and anger were not only my weakness,I became emotionally drained, but it was also my empowerment. I needed that frustration and anger to keep me going, screaming at my own body to move when I was seized up, and the agony that ensued for moving it. 

I really had to train myself to accept help from family and friends, and try not to be so fiercely independent. Trying to do everything on my own was deep seated within me, I didn’t want to look weak, or behave differently from my classmates, so I tried my hardest to keep up and stay involved. Unfortunately children can be quite cruel, and on a number of occasions when my friends got annoyed that I walked so slow, and couldn’t run around, they would make fun of me, and more than once actually ran away from me. My temper and sadness got the better of me, I would shout after them horrible names for leaving me, but then break down and cry whilst hobbling home, knowing that I was different and they didn’t like me being disabled.

The emotional stages of fear, grief and denial I went through was extremely hard as a child, I once was a “normal” child, and then I wasn’t. I would rely on friends to push me around in my wheelchair especially when my arms and wrists got tired, but if they weren’t interested in helping because the novelty had worn off, I had to find a way to get home, or for the next week or so I wasn’t invited out to hang out, and because I depended on them for support, if I wasn’t invited, I had no option but to stay indoors, and find something else to do those evenings.

Due to the physical challenges it unfortunately impacted heavily on my emotional state, it was draining not just on me as a person, but everyone around me, and for those years of my childhood, they were harder to cope with than I would have ever imagined.
As a long cane user: My emotional state has definitely varied over the years since my sight loss began. In some ways it was similar to my emotional state when I was in a wheelchair but it dipped and progressed in lots of different ways. As I started to lose my sight I feared a lot for my future and became frequently angry over the lack o control, my late teenage years were particularly distressing because although I had accepted I couldn’t see as well as I used to, I was in denial that it could get worse, and exclaimed several times over the years I would take my own life if I ever lost my sight completely. 

Because my sight deteriorated in stages it was in some ways easier to get a handle on it and adjust to my lack of vision, but because I knew exactly what I was losing I became far more angry and upset, and it all boiled down to the loss of control, and asking others for more and more help.

When I suddenly lost my remaining vision, it was a real blow. I went into the hospital knowing I would regain more sight, and waking up from my operation with nothing. The reason I say knowing was pure denial; my Surgeon, who was also my Professor, had done this more than once over the years, so even though I knew the risks I refused to believe there would be a bad outcome. After 24 hours I had light perception and a tiny pin prick of my old vision, that was what made me carry on with life, and realise things could be worse. I’ve still had my moments of ultimate distress, fear for my future, and grieve for what i’ve lost. But through the help of family, friends and a counsellor I now take each day as it comes, and see everyday as a new challenge to conquer! 🙂 🙂 🙂