Review

Review: Zebra Ring Splints

My hands have never felt as stable in my life.

As I am writing this review, I am pressing every key with a new level of stability. If someone told me before that there would be a time where I could write, type, or paint without sever pain, dislocations, and hyperextension I would have called them a liar; I simply wouldn’t believe them.

My initial reaction when putting the splints on, was how weird my fingers felt. Going from a lifetime of pain, dislocations, and hyperextensions to suddenly my fingers being in-line was a hard thing to process. Before these ring splints, I did have Oval 8’s prescribed by my Occupational Therapist, but they weren’t custom made, therefore my fingers could still slightly hyperextend in them, and I could only have them for my PIP joints on my right hand. Custom made ring splints are a whole new world.

 

In my order for custom made ring splints, I asked for a mixture between titanium and stainless steel, here is a break down:

Stainless steel

Swan Neck Ring Splints for the PIP joints in all fingers and the DIP joint in my dominant hand pointy finger.

Titanium

MCP Joints for both hands, middle finger
Buddy Splints for my little fingers and their buddying finger

Thumb IP and MCP Joint with Thumb Splint Volar Support

ringsplints.png

I am going to break down this review splint by splint.

Swan Neck Ring Splint

I have found, initially, these splints were working extremely hard to give my fingers ‘normal’ alignment. I could feel them every minute of the day, and the pressure when my fingers would usually try to hyperextend was almost bruising so to feel. Overtime, this feeling wore off, and it’s very rare I notice them now, they fit comfortably on my fingers, and as mentioned before, they have opened a whole new world to life with minimal pain.

MCP Joint

This joint is one of my least effected joints, but I bought this splint for both hands middle fingers as it helps to prevent all fingers from hyperextending in general movement. I have found that this was the hardest splint to get used to, as it stops your hand from forming a full fist. I have had to adjust the way I grip certain things including opening bottles and even opening my catheters. However, since adjusting these things, I have had a significant drop in my hand pain, which for me, is a huge win.

Buddy Splints

I have this type of splint on each hand to try and prevent outwards motion little finger dislocations. The pain in my little fingers have almost halved from wearing these splints, and my dislocations have just faded into the distance. I do still get pain, but nothing near what it used to be. Honestly, these splints have lived up to all my expectations and more.

The Buddy splint and the middle finger and MPC Joint splints of my left hand were initially nipping when I had my fingers together, however, over time this issue faded away. I take this to be my body getting used to the splints, allowing the skin around the splints to toughen up.

Thumb IP and MCP Joint

I have a lot of issues with my thumb MCP joint, and I have many custom braces to help stop the movement when I’m having a bad dislocation day and I need complete stability. However, I was in dire need of something I could wear to support the joint, but still allow movement, this is where the thumb IP and MCP ring splint comes in. Although I am waiting for another thumb brace to arrive, the one I currently have has changed the way my thumb works. I can grip things a lot easier now, as mentioned above with the MCP splint, I have learnt how to open things such as bottles, cans, and even my catheters without repeated thumb MCP dislocations. Honestly this splint has been a game changer for me.

 

Are they wheelchair friendly?

I have found that the swan neck ring splints and buddy splints are completely wheelchair friendly, just like my oval 8’s, however, I would suggest wearing gloves as without them it is metal on metal. The MCP splints is where it becomes a little tricky. For me, I hold my wheels as well as the grip on my wheelchair to propel, so for me, this was ok, however, you can’t close your hand tight enough to grip the rails on your chair with the MCP splint, which makes sense for the splint, but is tricky if you’re a wheelchair user so keep this in mind. I also found the thumb IP and MCP splint a little tricky to manoeuvre in the chair due to slight pain in the crease of my hand, but for me this isn’t an issue as I have compression splints for my thumbs when I’m in my chair.

 

Now we come to the subject of postage. This is where we hit a bump in the road. When I placed the order (July), I was just about to go on holiday, so I initially asked for my order to be held off postage until the end of the following month (August), there was no issue with this. The order was completed and sent off for posting somewhere around the beginning of September. However, due to unforeseen circumstances, this package got lost in the post, prolonging the delivery of the whole order. I was devastated, and honestly, I was very upset by this, but there was noting that could be done other than to re-make the order as soon as possible and ship it out once more. This is what was done. The second package was posted out at the end of October and arrived into the UK promptly. I was very excited to receive my package when instead, I got a piece of paper post through my door telling me I had to pay import duties of over £100 to receive the package. I was without words, I felt stung by the system. Unknown to me, when ordering items over the price of £39 from America, you will have to pay a lump sum of import duties to receive said order. I was shocked, mad, and distraught by the whole thing, I had paid a lot to receive these splints, and now I had to pay over £100 to collect them from the post office. There was nothing that Zebra Splints, or me could do. It had to be paid, luckily, I had the savings, so that’s what I did. This is something to consider if you are ordering from America overseas, especially if you are based in the UK.

I ordered my splints from Zebra Splints.

Review

Review: Melanie’s Memorial Jewellery

Forever here, even when you’re gone.

After my Nan passed in January 2018, my Mum, Dad, Sister, and I wanted to do something to keep her with us forever. We wanted to have a way to take my Nan wherever we go with love and ease. This is when we decided to search far and wide for memorial jewellery.

My Nan passed away after a wonderful and long life at the age of 94 (11 days before she tuned 95), we were heartbroken to say the least. You see, we had in mind that once my Nan passed, we would consider getting some memorial jewellery made in her honour, so we could keep her with us wherever we go. This is when we found Melanie’s Memorial Jewellery on Facebook.

We got in touch and honestly, this lady is amazing.

I started the conversation for our order; 3 rings and 1 keyring. Not only is her response prompt, she made me feel comfortable and free to ask any questions at all and was one of the most flexible and friendly small businesses I have ever purchased from. After finding out that Melanie lived local to me, this was even better. This meant I was able to take the ashes to her in person and pick them up to avoid the risk of them being damaged or lost in the post; which is one of my biggest fears with items as personal as these.

To note, the keyring was won in one of her many competitions that she runs across Facebook and Instagram, which means my Dads memorial item cost us absolutely nothing!

These products are made from jewellers’ grade resin, and can encapsulate hair, ashes, and even breast milk. I also know that Melanie is constantly experimenting at extremely discounted prices from her already affordable prices anything and everything she can get her hands on. She is often starting open discussions on her Facebook page for what she can try next. To my knowledge she has started using pets’ skin such as shed snakes’ skin, and she now does indentations of fingerprints, handwriting, and pets paw/nose prints. She truly is an artist.

After around a week or two, our jewellery was ready to collect. I can’t even put into words how beautiful it is. The colours are so vibrant, they sit beautifully, and I couldn’t be happier. None of us could. To say this isn’t this lady’s main job is beyond me, because the care, love, and attention she gives to every single piece is amazing.

30728765_927252520788501_7195701750026731520_n

Since ordering these memorial pieces, between our family we have gone on to order a charm for a Pandora bracelet with hair and breast milk, a necklace with breast milk, hair, and a finger print, and I am currently looking into potentially ordering a pendant and another ring made of my Nan’s ashes. The quality is just that good I wouldn’t go anywhere else.

Over a year on, the service continues to be one of the best small businesses I have purchased from. After a little accident with my ring, I managed to take a chip out of it. I was distraught to say the least. After getting in touch with Melanie, I dropped my ring off today, and she is more than happy to fill in the chip. I can’t wait to be reunited with my chip-free ring once again.

Thank you so much Melanie for such beautiful jewellery we can treasure forever. Definitely head over and show her some love, check out her products, and maybe you too can give a home to some of her amazing products.

30707972_927252487455171_590694905282560000_n

Rest In Piece Nan. I love you and miss you so much.
Robyn

Disability, Spoonie

My Spoonie Essentials

We all have them must’s when it comes to being sick, imagine needing those must’s every day! Here is my list of some of my favourite’s when it comes to having a big sick day.

Heat and Ice Packs

Heat and ice packs are some of my favourites, there’s nothing better than snuggling up whiles you’re in pain with a hot water bottle where it hurts. I can’t even count the amount of times I have sat with a hot water bottle on my bladder trying to reduce spasms and cramps. I use a range of different heat packs, including hot water bottles, wheat bags, patches, you name it, I’ve used it. I once had to make a make-shift water bottle by filling up a 2L bottle with hot water while I was out camping!

bladder.PNG

Braces and KT Tape

If you don’t know already, I have more braces and splints than they have in the hospital itself. I wouldn’t be able to get through day-to-day living without them. Some of my favourites and most used are my AFO ankle braces, my compression suit for my hips and spine, and my thumb and finger splints. Although I have been prescribed all my braces and supports, you can get similar ones online. However, always consult a medical professional before purchasing any braces!

KT Tape (Kinesiology Tape) is a type of taping that supports joints and muscles when adhered to a join in a certain way. There are many different reasons for using KT Tape including but not limited to, sports injuries, unstable joints, and muscle pain and bruising. Personally, I used KT Tape when I need a little extra stability and pain management when I don’t need to fully brace a joint. The only issue I have with KT Tape is when removing it, because of my fragile skin, I often get skin tears and bruising.

royiscoming

Blankets and Box Sets

I have more blankets than I can count! There’s nothing better than getting home after a long day and snuggling up in a cozy blanket watching your favourite box set or movie. Some of my favourites to cuddle up to are; House, Criminal Minds, Greys Anatomy, Rizzoli and Isles, and Rocketman.

blanket

 


Pain Meds and CBD

Although I’m all about alternative medicine, sometimes I just need to kick the pain in the ass. I have a collection of different pain treatments such as painkillers, anti-spasmatic medicines, etc. But, one thing that has been a game changer for me is CBD liquid. When I’m trying to get rid of the dull bone ache, but don’t want to use prescribed medicines for personal reasons, CBD is my go-to. Always consult your Dr before trying new medication, what works for one, doesn’t always work for another.

pills.PNG


Hot Chocolate and Fluffy Socks

Can you beat hot chocolate and fluffy socks? I thought not. I love this time of year, because to go along with my blanket snuggles, fluffy socks are a must! When you’re having a rubbish pain day, you need your comfort, and mine just happens to be in warm, fluffy, tastiness. What are your favourite hot chocolate flavours? Mine are caramel, and gingerbread!

fluffy socks
Let me know what your favourite sick day must are in the comments!

Peace out,
Robyn ❤

Disability

A Fight Against the System

This is going to be a long one, so buckle up,

As I’m sat here, I am writing to you about the past 15 months of my life. The 15 months I have spent battling the system that is the UK, Personal Independence Payment (PIP). This exact system has had a deeply, irreversible effect on my physical and mental health. How it has led me down a path of self-destructiveness, and overall effected my wellbeing.

15 months ago, July 2018, I put forward my change of circumstances form as both of my physical and mental health has deteriorated. You see, I suffer with a condition called Ehlers Danlos Syndrome (EDS). A connective tissue disorder that as a side effect causes my joint to dislocate extremely easily, and effects the way my internal organs work (or don’t work). EDS also comes with a sweet handful of co-morbidities. For example, I suffer from an umbrella term condition called Dysautonomia, more specifically Orthostatic Intolerance – Postural Hypotension, meaning, when I stand my blood pressure doesn’t know what to do, therefore drops to a dangerously low pressure, causing my heart rate to spike to try and keep my blood pumping up to my brain and heart. Because of this, I am at risk of blacking out, making me a fall risk. I am now dependant on crutches and part time wheelchair use to get around. Alongside this, I have a mental health condition called Emotionally Unstable Personality Disorder (EUPD), causing me to have extreme, rapidly changing emotions, which often leads to instability and impulsive, destructive behaviours.

Now we have the medical shenanigans out of the way, let’s talk about PIP.
I would like to talk about my dehumanised, unfair, and triggering experience battling through the system. You see, once I had filled out the long, long form once more, I was invited to a face to face consultation, where mine happened to be with an ex Accident & Emergency Nurse. When I heard her tell me this, I naively felt at ease, as if I had someone who would truly understand my pain, struggles, and conditions. Oh, how I was wrong.

You see, during the consultation, you are supposed to be asked questions about your daily living, your mental health, and your physical conditions. You should be asked to perform some basic tasks on your upper body and lower body, and then given enough time at the end to add anything the assessor missed. This was not entirely the case in my experience. Although I was asked a bunch of questions, when I received my notes back, my words were not recorded correctly. I was made out to be a liar, and she massively downplayed my symptoms. She stated that there was nothing wrong with my mobility, and because I was clued up on my conditions, I was healthy. She stated I had normal range of movements in all of my joints (the whole definition of EDS is that this isn’t the case), and she had written because I was well presented, there was nothing wrong with my mental health, including writing down that my self harm was just superficial scratches, despite me wearing trousers and a jumper. Because of this, I was denied PIP and my payments stopped instantly.

This is where it all began to unravel in front of me. This is when I began to appeal the decision.

Upon reading these false statements, my mental health instantly set a match. A match that lead me into a 15-month long self-destruct. Reading the statements, she wrote about my mental health being fine and my self harm being ‘superficial scratches’ caused my destructive behaviours to trigger, causing my self harm to increase in severity and frequency.

When I initially appealed the decision, I was instantly sent back a form of dismissal. Within the space of a week, they had apparently taken my appeal to the board, and decided that the assessor was correct, and my PIP was once again refused. So, I decided to give myself a voice. I decided I had the fight in me to take the case to a tribunal. Take it to court and let a panel of 3 independent assessors (A Doctor, Judge, and Medical Liaison) decide what was best. This is where the 15 months wait comes into play.

Along the 15 months wait, my mental and physical health took the toll. I saw a huge and dangerous increase in my self harm, causing 4 suicide attempts, and multiple hospital treatments for burns. My mental health was hitting rock bottom, and it all felt completely out of my control. My physical health was deteriorating in front of my eyes also. I was experiencing more and more dislocations daily, including A&E visits for thumb dislocations that didn’t relocate properly. I can no longer walk long distance, so I bought myself a wheelchair, which I am still learning how to self-propel, and I am blacking out more and more, including blacking out on the stairs a few weeks ago. It was seriously unhealthy, and dangerous. The stress, pain, and decline which wasn’t helped by the cruel words of my assessor, and the stress of the whole situation.

After waiting 15 months for a Tribunal date, I thought once the time arrived I would start to feel better about the whole situation, about the fact that I finally have to time for my voice to be heard, but that was far from the truth. The truth was, I was terrified. I was hurt. I was in a fit of panic for the weeks leading up to the date. I didn’t know what to do, because once again, I feared my words would be twisted and used against me. I was wrong.

On the day of the hearing, 15th October, I attended the Tribunal centre with my Mum. I was an anxious wreck, but she did everything to help me remain calm. Before I went into the room, a lady came out to me and talked me through how the day would go. She told me that the panel had read my report, and gone through all my supportive evidence that I had sent in. She told me who was on the panel, and briefly explained how things would go. This is how it worked out:

The Judge: He was there to open the tribunal, ask some brief questions about myself, who I was, and who I had with me. He explained how the next hour or so would pan out and was there to ask anything he felt was missed by the others on the panel. He was here more as a formality.

The Doctor: He was there to ask me questions in relation to my health conditions, he spoke to me about EDS (which he had clearly researched). He asked me what joints dislocated and asked me about my walking aids. He sympathised when I told him about the dislocations and stated ‘that must be excruciating’ which I agreed. We then went on to talk about bracing and other assistive devices. He asked me about my Postural Hypotension, and what risks that causes, for example, fall risks. He was very detailed with his questions, which honestly, given my previous experience, I was sceptical of the whole conversation. Going over and over, what could be used against me, but I had to be honest, all I could do was be honest.

The Medical Liaison: She was there to ask me questions about my day to day living. She asked about my ability to cook and use utensils, how I struggle with holding things because of my fingers and hand functions due to EDS. She asked about assistive devices I use such as large grip jar openers and perching stools. There were questions on how I clean around the house, and what support I get from my parents at home. We then went onto how I get out and about, if I go places alone, hang about with friends, etc. It was at this point where I broke down a little. You see, it’s not often, if at all, that I go out alone. I am almost always with someone, be that my mum, or my partner Hanii. I got overwhelmed by this question because it is a huge ass reality check. I have grown up as the kid no one wants to go places with because arranging things for me and my health conditions is just too much hard work to able bodied people. Most of my entire support network is based right here, online. I cried, like, full on ugly cried to the panel at this point, oops. She then asked me about my personal hygiene, how I bathe and about my use of catheters to pass urine.

After all of these questions were asked, my Mum and I were asked to head out to the waiting room, as the panel gathered up the evidence and what was said and set about making a final decision on my case. I’m not going to lie, this felt like the longest 15 or so minutes of my life. I was shaking, holding back more tears, and just generally doubtful that the decision would be made in my favour. I was expecting the worst outcome possible, that they didn’t believe me and would further invalidate my struggles.

When we were called back into the room, we went to sit and the judge told us ‘it’s ok, this will only take a moment’, my heart sunk. Then, much to my surprise, they said the panel have come to the decision that they will be awarding me PIP. Honestly, I was shocked. I was in a state of surprise I never though I would feel; you know, like them videos you see where a child gets the surprise of a lifetime for Christmas? Well, that was me right then, I couldn’t have said Thank You anymore if I tried, I was overwhelmed with happiness.

So, the whole point of this blog post is to tell you that if you’re going through this currently, in the past, or in the future, you can fight this, and when you come out of the other end like me, this truly is all worth it. It’s hard, I’m not going to lie, but you are in no way, shape, or form, alone. The wait is a long one, it takes on average around 18 months to be seen at Tribunal level, on average 75% of PIP applications are denied at the first assessment. Those statistics are dehumanising and just plain wrong, but they’re the facts.

If you don’t think you’re strong enough, let me hold you up with you get in there kicking and screaming.

You are not alone.