Posted in Archive, may 2024

Overcoming Fear – Baby Steps

After being run over last November I have generally avoided going out – for months I only left the house to attend church once a week. Sometimes the panic and anxiety would be too much and it would be a few weeks in the house before my husband would be able to coax me back out.

It’s now six months later and I’m beginning to feel like I am seeing glimpses of my old self again. I’ve been having regular sessions with a trauma therapist who specialises in EMDR. It’s been very helpful.

The panic attacks haven’t stopped but they’re not as severe or as often. I can see progress. The other week on my way to collect the children from school I heard a child screaming ‘Mummy’. That sound took me back to the collision. The memory of my son standing over me screaming mummy, the terror of not understanding what happened, and the overwhelming pain, consumed me. I found myself turning my wheelchair off, crying hysterically in the middle of the pavement. The difference this time? The panic only lasted ten minutes. I didn’t have to phone for somebody to walk with me, I was able to eventually calm down, and carry on to collect my kids. 

Today I need to go to the bank and update my personal details as I got married at the end of October, just 5 days before the accident. It’s a task that I should have done months ago but I was living in a vice-like grip of fear. To get to town involves crossing multiple busy roads. But I cannot avoid roads forever – even if I’d like to. As I’m writing this, I’m sitting in Costa not far from the bank. Allowing myself time for my anxiety to reduce. Pacing my journeys this way and allowing myself rest periods away from the road helps make the task more manageable.

Everyday is different and has its own challenges but I’m finally learning to squash the fear back down. It’s not a race to conquer it, just one baby step at a time.

Posted in April 2024, Archive

UK gov sick note proposal; ableist and stigmatising

In a recent move by the UK government, changes to the sick note process have been announced that have raised concerns among disabled individuals and their advocates. The changes are said to make the process more efficient and streamlined, alongside helping to further cut the welfare budget. A move that is not surprising by a government who have repeatedly penalised disabled persons over the last decade.

The new process specifically targets those with ongoing mental health concerns adding needless stress and stigma. Furthermore, the lack of accessible working roles for disabled individuals makes it even more difficult for them to return to work. Many disabled individuals face barriers in finding suitable employment due to discrimination and ableism in the workplace. This has become a more noticeable issue in recent months due to the focus on stopping remote work for many businesses. Without the proper support and accommodations, many disabled individuals are unable to work, this will result many being unfairly penalized under the new sick note process.

This move by the UK government is sending a dangerous message that disabled individuals are not valued or deserving of support. After the UN hearing recently on the violation of disabled persons human rights, it is disheartening to see further backlash against the disabled community. This runs the risk of  leading to further stigmatization and discrimination against disabled individuals, who already face many challenges in society.

The government must place more value on the account of  the needs and experiences of disabled individuals when making policy decisions. Rather than demonizing and penalizing disabled individuals.

The changes to the sick note process in the UK are worrying and ableist, and they highlight the need for more support and understanding for disabled individuals in society. Disabled individuals deserve to be treated with dignity and respect, and it is essential that policies are put in place to ensure their rights and needs are met.

Posted in Archive, February 2024

Discrimination In The Rental Market

In our recent search for an accessible home following being served with a S21 notice and my changing health needs, we have encountered a disappointingly high level of discrimination and prejudice. Finding an accessible property has proven to be a challenging and frustrating process, not because suitable accommodations do not exist, but simply due to the discriminatory attitudes of several estate agents/landlords we have encountered.

In both private and social housing sectors, we have faced barriers. Despite legal protections against discrimination based on disability, we have been told by multiple landlords that they do not accept wheelchair users or those who do not have traditional full-time employment. The scarcity of accessible social housing options only adds to the difficulty of finding a suitable living situation before our S21 expires.

What has become abundantly clear throughout this process is that the real obstacle we face is not my health or disability, but society’s unwillingness to make simple accommodations for individuals with disabilities. Accessible housing should not be considered to be a luxury but a basic necessity. Yet we find ourselves constantly met with obstacles and roadblocks. While there may be laws in place to protect against discrimination, they seem like empty gestures in the face of the everyday reality.

It is time for society to prioritize accessibility and inclusivity in housing and other areas to ensure that individuals with disabilities are able to live independently and with dignity. The current state of affairs is unacceptable, and it is up to all of us to work towards a more inclusive and accessible society for everyone.

Posted in Archive, May 23

Patience: Can you lend me some?

Patience Can You Lend Me Some

Poetry isn’t my typical style. Even in my job as an author I write children’s books and YA fantasy fiction. However putting pen to paper and writing whatever comes out is how I deal best with my emotions.

I wrote this last night while in the bath. I’ve been struggling with nerve issues recently along with another round of optic neuritis that has drastically impacted my sight. This is the unedited raw poem that came from the turmoil. It may not be the best but it’s the best representation I have of me right now. I know others will understand.

Posted in Archive, November 2021

Prolapse, Painsomnia & Filters

It’s hard to know to where to start. I’m so tired from the painsomnia and I know that is partially responsible for my level of frustration, emotional upheaval and general anger towards this current situation. Focusing on one hour at a time seems to help.

Being very much limited in my capacity to move much is hitting me hard. Having finally found a medication that helped my Dystonia, then developing this prolapse and adapting to its limits feels like a slap in the face. I cannot empty my bladder fully due to it, which is resulting in bouts of incontinence with no warning, I haven’t been able to go the loo properly since Thursday last week and that’s causing its own pain. I move around with my thighs clamped together terrified of making it worse. There are 36weeks to go before the first consultant appointment.

Acknowledging that this hit my mental health is important. I was already in a bad patch due to ongoing hair loss causing anxiety. This new complication on top knocked me down, hard. I know I’m a fighter and will adjust with time. However it’s important to recognise that what I’m feeling is valid.

Before I sign off I want to touch on one thing; look beyond the filter. In the first photo above the filters has smoothed out most signs of exhaustion, my eyes almost look sparkling and awake. It’s a nice image with little hint of what’s going on. This is an image I would post on my personal profile or my author page; it doesn’t reflect my current issues. The second photo is filter free, the bags under my eye are clear to see and the dark rings obvious. The puffiness in my face from my meds hasn’t been smoothed out. This I would post on my Dystonia and Me page. It is a truthful image.

I never posted either photo (until now). It got me thinking about the need to act ok when I’m not. It’s quite a damaging reality. We see it everyday. Just some food for thought. Personally I’m going to stop using filters, see the reaction to truthful imperfections and struggles. Live my truth. (unless me and my daughter are using it to be bunny’s)

Posted in Archive, August 2021

Adapt, Rethink, Go

We recently had to return the power wheelchair we had on hire. It had been with us for the best part of a year and had quickly become a very integral part of daily life. It reduced my pain, dislocation frequency and enabled me to get out and about everyday. It was freeing. We’d hoped by the time it had to be returned that I’d have been seen by the local wheelchair service for an assessment as currently I dislocate my fingers while trying to push my manuel chair. However it’s a long waiting list and an appointment date is still a while a way.

In the meantime I’m reassessing how much activity I can do and what I do each day. My head deffinently believes I’m more capable than what my body thinks I am able to do. A lot of this week has been spent resting and trying to find a happy medium. However I’m also currently on week three of my period and I know that when I have extended bleeds I generally feel rubbish and my joints and muscles seem to be worse in general.

I’ve started introducing sleep hygiene into my night routine to help improve the quality of my sleep and to see if it improves how rested I feel. I’m trying to have no screens for an hour or two before bed. Instead I’m reading and crocheting. This has also given my mental health a little boost as well which is positive.

I’ve had a gyny appointment come through for the end of September, so not long to go now. Hopefully this one won’t get cancelled.

Posted in may 2021

Looking forward

Recently I’ve been on a bit of a rollercoaster of emotions. Hence why I didn’t automatically return to blogging following my son’s operation in March. I wasn’t sure where my head was at and needed to work through it. A handful of events had triggered it and I was up and down more than the seesaw at the park.

I’d had an assessment where I need to provide extreme detail of all my conditions right from the start to now. You can imagine how emotionally exhausting that can be, explaining to someone why you had to give up your dream midwifery degree, relieving the rapid decline in health over the years and what I do to cope. I hadn’t anticipated it to affect me so strongly but it did.

It’s taken awhile but my head’s back where it’s stronger. I think during these covid times where we don’t have our usual coping mechanisms it’s quite easy to feel sucked under. Previously I could have rung up my friends and been at the soft play laughing over a fruit shoot, while the kids ran themselves to sleep. Spirits lifted, dark cloud averted.

Im looking forward now, and focusing on the future. On the post lockdown adventures with my family, with having friends in for a brew and a natter. But also accepting that lockdown has taught me that I don’t need to be on the go and out every day. If my body’s saying no then PJ’s, Disney and baking is it. That’s perfect too.

What are you looking forward to?

Posted in Archive, January 2021

Mental Health: It’s About Surviving Not Thriving

Mental Health Custom Poster

The current times we are living in are unique. Nothing we have ever lived through before could have prepared us for a pandemic requiring multiple lockdowns and restricted social interactions. Reports on rising rates of depression, anxiety and mental health issues are really not surprising. There is no normal currently. Life has become about surviving not thriving through each moment, and focusing on the little wins as they come. If you wore actual clothes instead of fresh PJS today then in my eyes you are smashing Lockdown Three.

If you are struggling right now and feel like you need a bit of help please do explore the options below. I myself have tried several of them and am more than happy to discuss this if needs be. Simply send me a message via the Dystonia and Me facebook page and I will get back to you as soon as I see it.

NHS resources for Mental Health Help

  1. https://www.nhs.uk/oneyou/every-mind-matters/?WT.tsrc=Search&WT.mc_id=Brand&gclid=CjwKCAiAr6-ABhAfEiwADO4sfRJl_Cdhon5SUEsyIIISYLnZpfvy7_X_HoT1E-XINaDydvctSQR3xRoCA9YQAvD_BwE

This link will take you to the NHS Every Mind Matters page. Take the time to really explore this site as it is full of information. If you are finding it hard to absorb maybe bookmark the page or print off some bits and come back to it. One of the great aspects of this site is that it has a feature called Your Mind Plan Quiz; you answer 5 questions and it creates a plan designed to improve and maintain your Mental Health.

2) https://www.nhs.uk/conditions/stress-anxiety-depression/moodzone-mental-wellbeing-audio-guides/

If audio guides are more your cup of tea then these free NHS audio guides may do the trick, there are multiple ones to choose from depending on what aspect on your mental health you are struggling with.

A-Z Mental Health Charities Link

https://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines/

Whether you need help yourself, or you concerned about a loved one, these charities and support groups will be able to help or point you in the right direction.

Urgent NHS Mental Health Helpline (England Only)

https://www.nhs.uk/service-search/mental-health/find-an-urgent-mental-health-helpline

This 24 hour helpline is available for people of all ages. The link will take you straight to the assessment which will get you started.

Posted in Archive, December 2020

International Day of Persons with Disabilities 2020

The theme this year is ‘not all disabilities are visible’. This is stressing the fact that not every condition is immediately visible; according to the WHO report roughly two-thirds of people with a mental or neurological disorder will put off going to a doctor for help largely in part due to stigma, discrimination and neglect. As someone who has very much been on the receiving end of this trio when it comes to living with multiple neurological conditions, this comes as no surprise to me.

Looking at me as I am right now, curled up on the settee trying to not make to much noise so as to not wake the kids, you could be forgiven for not knowing I had a disability; even if your keen eyed and spotted my odd eyes you wouldn’t know that my sight was impacted and would be unlike to think too much about it. However even when you can spot my spasms or a dislocation, you cannot see my brain fog, my sensory loss, the neuropathic nerve pain, no one can see fatigue fight, the pain induced insomnia, the sixty odd dislocations a day and so much more.

Spot the faulty eye

I love talking with young children about my disabilities because they don’t hold back. “How does your chair work?” “Can you get upstairs?” “Do you have to put you your chair in the bath?” The look of fear on the parents faces as they worry that something not deemed politically correct may be asked is what I find disheartening. Without these beautiful minds being curious how can stigmas be fought against, broken down and normalised? This should be praised and encouraged. I appreciate that not everyone will want to be asked, but you’ll be surprised by how many people are more than happy to discuss these things.

Disabled people, whether the condition is visible or not, physical/mental/learning or otherwise are still people. Next time, pause, maybe ask a question, you could be amazed at how it opens your eyes.

Posted in Archive, Novemeber 2020

Family Planning When Chronically Ill

Damon and I had always said right from the start of our relationship that we envisaged having three children. We both came from fairly large families, with him being the eldest of three, and myself the eldest of four children, so it seemed natural for us to imagine plenty of tiny feet running around creating havoc in the way only kids can. As my conditions were fairly well controlled when we met, the only issue with our forward planning was the fact that I had been told many years before at the age of 19, that I had severe endometriosis; to the point that they suspect I would be unable to conceive naturally and would need medical assistance to do so.

Common symptoms of Endometriosis

We have been fortunate to have been able to have our son Stefan Elijah, now three, and our daughter Evie Maise, now 18 months, without any assistance. Their existence to me feels miraculous. When we fell pregnant with Evie we discussed frequently trying for our third child shortly after her first birthday. It was exciting, and something I was really quiet fixated on. Physically I had managed to get back to a good place after having Stefan, and it seemed wise to do it close together, before my health started to go downhill. My pregnancy with Evie was a rough one however, and I spent multiple periods as an inpatient in my local hospital. We had hoped that after Evie’s arrival that my body would improve again as it had following Stefan. However, this time round it took months to get back in to the Botox system and once again I ended up in the hospital for over a week needed an NJ, constant fluids, unable to swallow, or really communicate. With each day the idea of a third was slipping further away, I refused to talk about it for awhile. It really affected my mental health.

While I have had periods of better health over the last 18 months, it has generally been a downhill, to the point where I’m now essentially blind in one eye, reliant on an electric wheelchair outside of the house, and being assessed for demyelinating diseases on top of everything else I already had going on. My hands are full to say the least. So Damon and I sat down and agreed that it would be unfair to even consider bringing a third child into the family; he was also concerned if my heart could physically take a third pregnancy as it has struggled with the last two. It was an extremely hard conversation to had. Even though we both knew it be the right choice to make, it didn’t make the biological want for another child any less.

Stefan aged 3
Evie 18 months

I often get asked a mix of questions in relation to children. Sometimes people will ask “So when do you think the next one will come along?” It’s a well meaning question, that I always answer with a light hearted “oh my hands are full enough with two”, but it stirs the emotions, the want for another that is so strong since our daughter started to so much more independent. Other times it’s the slightly harsher “How you can even consider having biological children when you know some of your conditions are genetic?” Generally I don’t answer this question in public, mainly because it catches me of my guard. However it is fair. My Ehlers-Danlos Syndrome has around a 50% inheritance rate, its slightly more prevelant in girls than boys. Yet there is every chance that both children have escaped without developing it, there is also a chance that if they do have the condition that it’s not as severe as mine. There is no way to know. It’s also worth bareing in mind that mine is made worse due to other conditions that impact each other. I would say that before you ask anyone about kids really think; if they have a medical condition perhaps stay away from the topic until they bring it up. In can be a sensitive one.