Disability A-Z: P is for Pain and Pain Management

Pain, it’s something many people live with, and yet it’s very personal.

I’m one of those people who has lived with some type of pain all their life, be it muscle spasms, headaches or pain from fatigue or strange pulsating and crawling sensations on my scalp and a feeling of pressure, as if fingers are pressing on my scalp.

The worst type of pain I have had was from headaches related to hydrocephalus. My shunts control my hydrocephalus, but that doesn’t mean I haven’t had problems with them.

One of my main symptoms was headaches. They were intense and made me cry. I was also lethargic and would vomit.

Cerebral Palsy makes me feel like my muscles are in a vice. Muscle spasms feel like strong cramps and can keep me awake at night. They are painful and I take a muscle relaxant called Baclofen. My spinal deformities cause pain in the form of back and neck pain and my foot deformities do too. The pain I have in my feet is in my ankles and foot arches because I have spasticity (muscles that are overly stiff) as well as weak muscles.

Often, my muscles throb and I have pain then.

For the days when I have more pain, I take Tramadol. When I am tired and in pain, my thinking will be impaired and I will have a hard time communicating, to the paoint of being unable to.

We have an infrared heat lamp which makes me relax so much I’ll fall asleep. Being cold causes more spasms and pain and I use a hot water bottle in bed every night in the winter.

Unhackable Soul by Maureen Sharphouse

About the Author:

Maureen Sharphouse lives with her husband, Peter, their dog, Jackson, and their Birman cat, Phoebe, in the village of Milnathort, Kinross-shire, Scotland. She is a life and mindset coach, mentor, NLP Master Practitioner, writer, and speaker. Maureen’s passion is to inspire and help individuals live a unique legacy they are proud of. Her mission is to help people discover who they are beyond their physical body, live their best lives, and restore and unleash their soul’s fire and passion. Maureen’s vibrant enthusiasm for life is evident despite living with severe daily pain and complex ongoing health challenges. She is a lover of morning sunrises, good coffee, fresh flowers in her home, and spending time with her much-loved family and grandchildren.

You can connect with Maureen at MaureenSharphouse.com.

Sign up for the 30-Day Unhackable Soul Course here: unhackablesouluniversity.com

About the Book:

Fed up with pain and illness dictating your life?
Choose to rise up.

Living with chronic pain is far from easy. Left unchecked, it erodes your spirit and keeps you living in the dark. It can influence what you believe about yourself and even hack your soul–if you let it.

Author Maureen Sharphouse knows the challenges of living with pain first-hand. She has endured more than three decades of debilitating physical health challenges, including the incurable neurological illness known as “the suicide disease.” Yet, in the midst of her daily pain, she lives with passion, joy, and enthusiasm for life.

In thirty daily missions. Unhackable Soul reveals how you can feel vibrantly alive despite chronic pain. Discover how to
rise up from a life dictated by pain and illness to one fuelled by enthusiasm and purpose.
feel alive and experience greater joy, peace, and comfort.
wake up every day eager to embrace life despite your challenges.
Live well. Reignite your light. It’s time to become Unhackable.

My Review:

I was really excited when Maureen Sharphouse sent me an Audible audiobook of her memoir, Unhackable Soul. I think the title is very apt, as Maureen is unhackable in my opinion.

In her memoir, she discusses how she got her diagnoses of MS and then Complex Regional Pain Syndrome. The importance of family support is present throughout the book, and the fact Maureen narrates it makes Unhackable Soul even more powerful.

Maureem has experienced dark moments, lonliness, uncertainty and more. I, too have felt, and sometimes still feel these things.

I identified with her in these moments although I have Cerebral Palsy and Hydrocephalus and not the same conditions as she does. Because often living with disabilities is a constant uphill fight, yet that fight is also very personal.

Maureen is a wonderful person and someone I am proud to know, even if it’s through phonecalls and emails. She’s someone who makes me feel immediately at ease, and her naturally soothing voice is perfect for this audiobook. The pacing is unhurried but with great attention to detail, and I can tell that awareness of her conditions is important to Maureen, as are family, friends and the times she is in places that are special to her.

Unhackable Soul has so many life lessons, and listening to it is like having Maureen in the room with you. It’s like a friendly chat from a caring and empathic friend.

I wonder if one day I’ll meet Maureen? I hope so.

Thanks to Maureen Sharphouse and Unhackable Press for my Audible Audiobook in exchange for an honest and voluntary review.

5 stars. I’d give it more if I could. Unhackable Soul is unforgetteble, just like Maureen herself.

Where to Buy:

Boldwood Romance Tropes Bingo Day 6: Friends to Lovers-Josh and Gemma The Second Time Around by Sarah Ready #BoldBookClub

About the Book:

The highly anticipated sequel to romcom Josh and Gemma Make a Baby. 
Everything is about to change.

Gemma Jacobs has life figured out. She’s upbeat, positive to a fault, and the master of her own destiny. She has a wonderful career in social media marketing, lives in a trendy apartment with her fiancé Josh Lewenthal, and is pregnant with their much-loved baby.
Her life is wonderful. Absolutely perfect.
Except…
What really comes after the happily ever after?

Josh Lewenthal is laid-back, fun-loving, and always finds the humor in life. He writes a wildly successful web comic series, and can’t wait to marry Gemma—the woman of his dreams.
His life is amazing. Terrific.
Except…
What happens when everything changes?

Suddenly Josh and Gemma’s lives are turned upside down, and their love and their future together are at risk. They realize their happily ever after isn’t the end, it’s just the beginning—and now they have to fight for it.
They confront a devastating separation, the return of world-infamous Ian Fortune, and the question of whether or not their love can truly survive when everyone says…it’s already gone.

Captivating, gripping, and full of unexpected twists and turns, this love story yanks you into what happens after the happily ever after.

My Thoughts:

TRIGGER WARNING:

Traumatic Brain Injury, Premature birth

Josh and Gemma The Second Time Around follows them after marriage and the end of Gemma’s pregnancy.

The prologue had me hooked. This propelled me to immerse myself in their story and wow, was it an action-packed and emotional rollercoaster!

I listened to the audiobook. It was a quick listen, and the narrator was perfect for Gemma’s voice and also Josh.

Baby Hope was just the cutest. Her name choice was soo apt given how she came into the world and I was happy Gemma had support from her mum, but I did NOT like Ian, or his attitude and views towards his work at the rehab facility Gemma was in. I’m a person with multiple, severe and complex disabilities myself (although I don’t have TBI) and found this shocking. I’m glad Gemma did not want much to do with him. Because I didn’t either.

I was rooting for Gemma and Josh through the ups and downs of their marriage and life. I felt so many emotions: sadness, happiness, anger and hope.

Thanks to Sarah Ready for raising awareness of Traumatic Brain Injury and premature birth. May this awareness go a long way to help those with TBI and those who were born prematurely. I was born prematurely and Hope’s story made me emotional as did Gemma’s.

I would have liked to experience more of Gemma’s experience in therapy, as I felt that was skimmed over.

This audiobook is beautiful. Thanks to Sarah Ready and the publisher via NetGalley for my eARC in exchange for an honest and voluntary review.

5 stars

Wheelchair Accessories Trial

Today was finally the day that I got to trial wheelchair accessories. The weather was cold but there was some sun that was warm. later on.

We arrived at the dealership on time and I saw the same occupational therapist as last time.

I felt a little nervous but excited as she trialed the products with me. We trialed three headrests (Contour Headrest, Adjustable Lateral Headrest and Extended Lateral Headrest, all from SPEX Seating).

Two sizes of Stayflex chest harnesses and 4 point pelvic belts (both by Bodypoint).

And two sets of JAY positioning shoe holders (one with Achilles tendon relief, one without)

I was especially excited about the fact we found mounting hardware for the headrest that is very flexible and adjustable at all angles and in all directions. For the first time ever, I was not straining my body, neck and head trying to reach the headrest.

The therapist said my current backrest was well built but that it doesn’t support me enough in terms of contouring and side support and it doesn’t conform to my body’s shape and deformities. This is what I’ve heard before.

Another happy moment was when I mentioned the cushion I had been recommended and she was in agreement. That trial for that and a backrest trial will be sometime in the future, as well as one for another wheelchair.

I’ve chosen a size of chest harness and pelvic belt and we all felt the Extended Lateral Headrest was better for me as it offered me much nore support and for once I had no neck ache with it. We finally settled on the positioning shoe holders without tendon relief as they will fit on my footrests better.

I’m glad to find such an experienced therapist and we were there an hour and a half and we both felt listened to and not rushed. We confided in her about people’s reactions when they know how complex my needs are and how many people just have no idea how to react to me when I tell them what disabilities I have.

We’ve already had technicians walk away and not come back, and we all agree that it’s about good positioning from head to toe, starting with the pelvis.

The questions she asked were:

“What cushion do you have'” We explained that it’s a JAY Dual Valve air cushion that is adjusted the best we can. She asked if it was adjusted now, and I said yes.

She asked if I could sit up and sit back more, and I answered no.

She asked if my wheelchair has a seat tilt feature, and I said yes. Then I said “We’ll show you my posture with it.” So we did and she said “Yes, I still notice your deformities and postural difficulties and there’s still the upper body positioning issue.”

So, we saw that my tilt and recline features on my wheelchair help my comfort but not my positioning without extra aids. We were all chatty, but there were also a lot of concerned silences.

She did nothing that made me feel uncomfortable or in pain, like other people do, like move me roughly or put their hand under my chin to get me to look at them better.

We were interrupted by phonecalls from the delivery guy with my drugstore order (more makeup as well as some much-needed makeup remover). I’ll update you about that on Sunday.

Today has left us both feeling very happy. The best part was seeing the products in the flesh rather than on websites.

Disability A-Z: O is for Occupational Therapy and Occupational Therapists

When I was thinking of what to talk about for this post, I immediately thought of Occupational Therapy, as this is a big part of the therapy that’s available for my disabilities.

Occupational therapy is a healthcare profession which focuses on helping people who are disabled to learn, maintain or improve their ability to perform activities of daily living.

This post is relavant to me now, since I am currently working with on Occupational Therapist (OT) to get my wheelchair accessories.

Last year, I won a writing competition by talking about how occupational therapy has helped me and an occupational therapist who made an impact on my life.

The occupational therapists I have known in my life have not been many. I don’t know if I had occupational therapy before I was four and a half at all, but when I was four and a half, I met Maggie Ellis, who would be my OT untill I was seventeen years old. She was the person I talked about in my OT Story for 3E Love’s Wheelchair Heart last year.

The places I have had occupational therapy have been varied, from the Hugh Ellis Paediatric Assesment Centre in the grounds of The Churchill Hospital in Oxford. I’ve had some at home and also at other hospitals.

Maggie is in my memory and heart as someone who was kind, funny, cheerful and encouraging. I always had a smile on my face when I saw her.

She noticed how I embrace my disabilities and uniqueness. She saw that I didn’t need someone to help me do that. She saw as my self confidence grew.

She saw how hard I tried to do things, and suggested I take a break for as long as needed, and detailed the fact that fatigue can give me headaches.

She helped me use the voice dictation software that I used for school and university assignments, and she gave my teachers advice on how to meet my needs better.

This did not always work because of people’s attitudes, but she did a great job of helping me.

As an adult, I once had occupational therapy with my physiotherapist as the occupational therapist was off work, and so that was a different experience. She got me to try and move a big gym ball with my hand (I couldn’t) and she figured out that a ball would need to have something to help me feel it better in my hand. So she suggested a ball with raised areas so I could feel it. She tried to get me to pick up a small block.

Occupational therapists have helped me get daily living aids throughout my life. Thank you Maggie and Helen, I will always remember you as people who really helped me.

At times, including recently, I’ve had to be my own occupational therapist, when searching for products when for some reason I did not get the help I needed.

I used my knowledge of my own needs when choosing a computer and have searched for many articles before deciding on a wheelchair, wheelchair cushion, backrest bed, hoist (Hoyer lift) cutlery (eating utensils) or whatever I need.

I have then talked to my OTs about products to see what they think. Other times, they have recommended products.

Occupational therapy and occupational therapists will always be a part of my life, but by working with them I have essential equipment and aids that I otherwise would not have.

A Good Day Plus Wheelchair Positioning Evaluation Update

Today has been the best day in a long time in our fight for my wheelchair accessories. It was the first time we got past the “please send us a quote” phase. Because we actually got the quote. We accepted and the Occupational Therapist is going to allow me to trial things.

I am SO glad to have found someone experienced enough to work with me and recognize my complex needs instead of lying to us about their experience, not sending quotes like the others or not even replying to emails and not explaining whether they could help or not. I’ve been very concerned about where we’d get help, so has Alfredo. I have always had the feeling that people were nervous or scared about my disabilities and how they affect me and like I was “scaring people off,” either by mentioning the names of my disabilities, or by further explaining how they affect me, and even more when I explained what I needed.

We say today our prayers have been answered after all this time by someone willing and able to say yes to me and my unique needs instead of ignoring me completely. I believe the people who help me are angels. We prayed hard that we’d get results.

I sent off my entry for the Start Strong Challenge by AutoCrit. And it was day 26 of Bloganuary. The subject was languages, something I love to talk about.

We watched the movie Wonder which we’ve seen more than once. It’s great movie for spreading disability awareness.

I’m currently listening to Tilly’s Tuscan Teashop by Daisy James, which will be on my blog on Saturday. Her books are feelgood and I can’t wait for this new series.

Wheelchair Positioning Evaluation: Third Time Lucky?

Today, we went to a different wheelchair dealership. It was only 5 degrees when we left to go, but it was sunny and so looked beautiful.

We got to the shop and had to wait a little. A worker started talking to us and took us to an examination room.

The lady we were talking to (who it turns out is an occupational therapist) was knowledgeable and noticed my in-turned feet (even in my winter boots) scoliosis (curved spine) kyphosis (hunched back) and lordosis (abnormal inward curve of the lumbar spine). She noticed that my lumbar lordosis is also cervical. I wasn’t shocked about this, as I half thought it would be given the other spinal deformities I have and the amount of neck pain and pain at the base of my skull I live with daily.

Again, we saw that:

My current seating system (backrest and cushion) is not doing what it needs to to support me

That my head/neck positioning is not good, and it’s expecially important to get that right for me so my head and shunts are well supported.

That this and overall body positioning is a challenge for me and that the postures I adopt are very exhausting for me.

She’d heard of the products I am interested in which is great. I talked about my having been a preemie at 29 weeks and my brain bleeds and resulting diagnoses.

We also talked about batteries and my wheelchair motor which sounds like a vacuum cleaner but the chair still moves well and as it should do.

We also talked about a future new powered wheelchair and the complexities of head and foot positioning for me, as in as well as shoe holders, a knee support for my left knee to help how much it turns outwards and falls to the side since I can’t control this on my own. She said because my feet are severely rotated, foot holders may not help the deformities completely but they will stop my feet falling off the footrests when the wheelchair moves and buckles will be better protection against spasms than velcro straps. I told her about when I had custom footrests and velcro straps and the force of the spasms ripped the straps open.

She said she was familiar with this happening in people with CP who have spasms.

She noticed when I was tired and I thought she was very patient and understanding.

I was tired when we got back from another early start, but it was a good day.

We are feeling good about today and hopeful and glad that the store workers are also occupational therapists.

Sunrise Medical Jay 3 Deep Contour Dual Valve Wheelchair Cushion: 4 Years On

I remember how excited I was to get this cushion in 2018, and I still like it for comfort. It’s a cushion with a mostly foam structure, and a well at the back. I have the dual valve air cushion as my posture is very assymetric. I stil rate this cushion as the most comfortable one I’ve ever had. It withstands a lot and the ROHO air insert is comfortable and none of the air cells has burst or needed any patching up at all. I have not needed to replace the air insert at all.

I’ve been up steep slopes, up and down city streets, in and out of hospitals, health centres and supermarkets and over some areas of uneven sidewalk and cobblestone areas (which would usually have me telling my husband to avoid those areas when guiding my wheelchair).

Everything has been comfortable with this cushion And sometimes we’ll have the wheelchair speed set to 4 or 5 (5 being the highest speed, the equivalent of 3.7 mph) if we need to get to places quicker or are on a wider street or in an open area of the park.

I have, on occasion, even almost fallen asleep in my wheelchair with this cushion (either at home or almost during long waits at the hospital).

The unfortunate thing is that I was on the Sunrise Medical site around a few months ago, and couldn’t find the 2 air valve version listed on the order form. only the 1 valve version (standard cushion).

I quickly sent a message on Facebook. A month later, Sunrise Medical replied and confirmed that the cushion in the 2 valve version was not sold anymore. I’d asked about their custom service, Jay Your Way, as I have positioning wedges on my old Jay3 cushion and wondered how to fix them to the new one.

I’d spoken to the rehab doctor who’d suggested I sort out the issue of the positioning wedges at the wheelchair dealership. I found the wedges helped a little with my leg positioning, but that years being transferred onto and off of the cushion had made a hole in the cover of my last cushion. We took the decision not to put any wedges on my Jay 3 foam-air cushion, and that’s saved the cover. I also noticed that the wedges were creating pressure areas for me.

Not having wedges on the cushion felt strange at first. People in evaluations have seen that the Jay 3 cushion is not a good cushion for me positioning wise, and nor is the backrest. And they have seen I’m exhausting myself because of my postures and how they are naturally.

I picked the Jay 3 cushion with a technician as it’s a skin protection.and positioning cushion for people with complex positioning needs who are unable to reposition themselves. Of all the cushion filling materials I’ve tried so far, I prefer air.

Anyway, this cushion will be used for as long as can use it for, and I now know that I won’t be able to get another one, and nor is it advisable for me, as I need more posture support, although this already has a good level, but the evaluations have shown it’s not enough for me. The problem is : I can’t sit properly, so that needs to be adressed with my seating and I need seating that will relax me as I have tight muscles and weak ones.

I’m glad I bought this cushion, as I was cusious to find out how Jay foam bases and ROHO air inserts worked together. I know ROHO has a cushion with foam and air very like this, plus extra support at the front of the thighs called the ROHO Hybrid Elite and it has 2 air valves, but it turns out I need more highly contoured support for my pelvis and legs and not just the ability to adjust air levels between left snd right within.a cushion.

We tried the option of adjusting air with 2 valves, but apparently it does nothing for me.

So, now I’m thinking back to ROHO’s Quadtro Select High Profile cushion, although some technicians advised against this, as they thought an all-air cushion woud make me more unstable. I also know I am very unstable on the Vicair cushion I have, which I don’t use anymore.

So, it’s frustrating to find that, while air feels more comfortable to me, as in reducing pain and feeling good to my body with it’s deformities and unique sitting posture, as well as altered levels of sensation, I don’t know if another air cushion is a good idea.

Since the consensus is that I need seating that will help me relax. and so far, foam, gel foam-gel and foam-air hasn’t done that. I did find though, that air did not react to temperature at all, so I didn’t feel cold with it like I did on winter days with a gel cushion or gel-foam cushion.

I definitely rate the Jay 3 deep contour dual valve air cushion in terms of comfort and helping to lessen vibrations from the wheelchair moving over uneven ground.

International Day of Acceptance 2023

As with every year, the 20th of January is the international date of acceptance. This day is to promote the acceptance of disabled people worldwide and was founded byAnnie Hopkins, the sister of Stevie, the founder of 3E Love’s Wheelchair Heart.

Find out more here:https://www.3elove.com/pages/international-day-of-acceptance

Fighting for acceptance for me is a lifelong struggle as well as a daily one.

We have had some examples of me not being accepted recently as in the wheelchair technicians’ attitud, in the way one spoke to me. The evaluation told him what he needed to know about my complex positioning requirements.

The fact that technicians haven’t been back to see me to me says a lot about acceptance of those with disabilities. I am trying take a “it’s their loss” attitude and until someone really does know what they’re doing I will not believe that things are going to happen.

We are still fighting for someone skilled enough to help me as my needs and requirements are complex. This is sad that this is still happening in 2023.

We have had to fight for access in the building that we live in as well as access to different services that I need, and a recent experience with public transport made us realize that we are going to have to fight for that as well.

I always say that I don’t think acceptance has really been achieved even though society does say that it has. I know this because of my loved experiences and the fact that I am still fighting for the same things that I should have had years ago.

I did my 20th post for Bloganuary today and the subject of that was what irritates you most about where you live? The assumption that all disabled people live in places that are OK for them is a myth.

The assumption that all disabled people have every piece of equipment they need is a myth.

The assumption that disabled people don’t have to pay for wheelchairs or other equipment is a myth.Nothing in life is free.

I have also talked in the past on here about the fact that acceptance does not need just one day but it does need a lifetime. And for me it will be lifelong.

I know I will not give up during that fight.

Disability A-Z: N is for Neurology, Neurosurgery Neurophysiology and Neurologists

Neurology is the study of the brain and its conditions

The neurology department at hospitals is one I have been familiar with all my life.I can’t remember my first experiences in one as I was a baby.

My first experience of neurosurgery was when I was 2 weeks old. I had surgery to treat my hydrocephalus which was diagnosed at this age via a CT.

Neurosurgeons inserted a Rickham reservoir which is an external drainage tube try to control my cerebralspinal fluid. I was unwell during this and it was abandoned. I got my first shunt at this age. I had other shunt surgeries at the age of six and eleven. Also at age eleven, I had surgery to fit a 24 hour pressure monitor called an ICP monitor (read about this in my I post).

Other visits to the neurology department throughout my life were for shunt revisions, general checkups, muscle relaxants, pain medication, advice, equipment and suggestions for my life.

I have also been to the neurophysiology department, where I had video EEG monitoring for seizures.

I have met so many neurologists in my life. Some were great, others made me so upset I cried in the waiting room, and others were plain rude and lacking in empathy and made me decide not to go back to them. So much so that I wondered if they would think and act differently if they themselves had my disabilities or another kind of disability or family members with disabilities.

I remember some good doctors when I was little and a teenager: Mr Teddy, my neurosurgeon (great name for a children’s surgeon) as well as Dr Theologis.

I’ve had many great family doctors and Dr García García was the best neurologist I remember in my adult life.

The advantage of being an adult is that I can decide what I want for my health. I was pleased when I turned 18 because this was something I would be able to do from then on. I prefer to be listened to and taken seriously. One of my mottos in life is “nothing about me without me.”

I also don’t like doctors, or people in general, not taking into account each of my disabilities or my wants and needs when talking about me, or to me. I have had all sorts of attitudes from neurologists. Understanding and empathy to ignoring or downplaying. Some give me time to speak while others interrupt or rush me or even talk to the person who has accompanied me. Some wanted to study me and I felt like a guinea pig and depending on what they wanted to do, I would let them or not.

Some are aware of my difficilty with neurological exams and others aren’t. Some don’t know they have pushed me too far in terms of strength, stamina and assisted range of movement until my body will tell them so via a spasm, tremors, involuntary movement or a wince, grimace or cry of pain. Or I’ll go very quiet. Some are aware of my quick reflexes or slowness and absence of movement and others aren’t. Some are aware of my sitting balance difficulties or muscle stiffness and weakness. Others aren’t.

Some are a joy to visit and others are not.

My experience of neurology, neurosurgery neurophysiology and neurologists is as predictable, suprising yet varied and unpredictable as every day with my disabilities.

I know I’ll have a lot of experiences with neurology departments and neurology to still be lived. I am glad to be here to talk to you about them.

I just hope I don’t need a neurosurgery department anytime soon.