Rare Disease Day 🎉

Happy Rare Disease Day! Said no one ever. 😂😂😂

I know this blog is called Hankie’s Brain but today I’m going to write about my (decrepit) body… 
I’ve got 2 rare diseases (that have been identified so far…), the 1st is called Ehlers Danlos Syndrome Hypermobility Type and the 2nd is called Ankylosing Spondylitis. Fun, huh? 

The 1st time I remember chronic pain being an issue was when I was around 13 years old. I went to the Dr’s who referred me to a Rheumatologist. After some blood tests they said I had Raynaud’s Syndrome and growing pains… except I’m 5ft, I’d stopped growing by then 😂  I accepted what they said because I didn’t feel able to question that or go back to the Dr’s about my constant pain and joint issues 😟 I felt that they tell me they’d investigated and made their diagnosis and I was wasting their time.  I lived on over the counter co-cocodamol. 

Eventually in my 20s I started to go back to the GP to complain about my backache and they prescribed much stronger codeine but they didn’t seem to think this constant, and at times crippling, backache was an issue/unusual or anything that warranted investigation. 

Ehlers Danlos Syndrome Hypermobility Type  (EDS HT)

A couple of years ago I decided to start researching causes of joint pain. I was constantly in pain, exhausted and feeling unwell and I’d had enough. I trawled through information comparing my symptoms and discarding possible ailments, nothing seemed to fit. Until I came across Ehlers Danlos Syndrome Hypermobility Type. 

Ehlers Danlos Syndrome Hypermobility Type covers so many of my symptoms, from the obvious (wobbly joints) to the obscure (hernias/gastro issues)

EDS is condition which affects your connective tissue, the human body is made up of so much connective tissue – when there’s something wrong with it you know about it. EDS is a systemic disorder, meaning it affects your whole system, from joints to organs.

The first thing that made me consider EDS HT as a relevant diagnosis was the fact that I’m hypermobile and my joints move about too much. Despite being hypermobile I’m not actually that flexible. My muscles, tendons and ligaments have to work so hard to keep my joints in place that I feel very stiff all the time and often feel like I’ve done a massive work out, when I’ve all done is rest. It’s exhausting.

It’s also pretty scary at times too. My joints tend to subluxate which is a partial dislocation. My collar bone is permanently subluxated and can’t be put back – it’s the opposite end to a “normal” dislocated collar bone. Many people with EDS often get full dislocations too. Whilst a subluxation may not sound awful it really hurts. It can happen to any joint – including my neck. That is scary. It doesn’t take any extreme movement or stretch to feel the joints in my neck pull apart – that pain lasts for days and the fear lasts for longer.

With my research and discovery of EDS HT came so many lightbulb moments, the main was that I was born with Bilateral Inguinal Hernias (hernias on both sides of my groin); I had them repaired when I was 5. This type of hernia is very rare in the general population, extremely rare in girls but very common in people with EDS! I would have never my connected my hernias to my joint pains! I kept coming across seemingly random things which were mentioned in relation to EDS HT and thinking “that’s me!”. 

It took quite a while to pluck up the courage to approach my GP about this because it is a rare condition and I thought they would just dismiss me. I spent a long time researching and gathering my symptoms and made a table on Word  (ha ha!), and took that along. The GP was brilliant and referred me to all Rheumatologist without hesitation! The Rheumatologist investigated and has sent me to the specialists in London.

EDS HT also causes chronic fatigue and flu-like symptoms. I often feel like I’m the verge of coming down with something awful. That can be very depressing. Now I know what is causing the fatigue and unwell feeling it has helped me to accept it and not fight myself so much. I used to sit there wondering what was wrong me, getting fed of hearing myself tell my family I didn’t feel well and trying to keep it all to myself, whilst berating myself. I’m still not great at expressing it but at least now I don’t feel like a hypochondriac or that people will just roll their eyes or think I’m making it up. 

(Apologies to actual hypochondriacs, hugs).

There are 6 or 7 types of EDS and you can read more about EDS HT HERE

Ankylosing Spondylitis  (AS)

As part of the EDS investigation the Rheumatologist sent me for a barrage of blood tests and X-rays, one of the blood tests was for a gene called HLA-B27 (snappy, huh?). I’d never heard of this gene but it came back positive. It turns out this gene is linked to a condition called Ankylosing Spondylitis. I had presumed that all of my pains were connected to EDS and it didn’t occur to me that there could be something else wrong, it came as bit of a horrible surprise. 

Ankylosing Spondylitis is a type of autoimmune arthritis affecting the spine, sacroiliac joint, rib cage and tendons (anywhere). It explains the severe pain in have in my sacroiliac joint- I didn’t even know there was a joint there! 

Picture from corewalking.com

AS also causes me awful pain in my heels (plantar fasciitis) because the tendons become inflamed; any of the tendons in my body can become inflamed at any time – joy. I get horrible pains in my rib cage which stop me expanding my rib cage properly and therefore my breathing can be a bit off. 

I have constant – literally non stop- backache. It’s always in my lower back/lumber region but increasingly I’m getting pains further up my spine and into my neck.  

There’s a risk with AS that the spine can fuse and I really don’t want that to happen. I have lost some movement/range in my spine but I don’t know if that’s permanent, I hope not! Stretching helps and I’ve been finding Pilates really good. I like Yoga but that’s not so good for the EDS as it has a tenancy to over extend the joints and obviously that causes issues and pain for me. It’s a juggling act! 

AS also causes extreme chronic fatigue. It’s a wonder I’m ever awake! Ha ha! There was a day recently where I woke up at 11, stayed at wake for about half an hour and then slept all day.  I could not stay awake. I managed to wake up from about 5pm to 7pm but then fell back fast asleep. It’s horrible. I think people must think I’m lazy; I’m shit company and that I have a choice in it. Luckily my husband and family are supportive. 

I’m due to have an MRI on my spine and sacroiliac joints to see how much inflammation/damage there is, I’m nervous about that 😟

I wear a back support and sacroiliac belt to help support my joints and keep them in place. That helps, as does Turmeric! Turmeric is a natural anti-inflammatory and I was sceptical but it does actually work! I can’t take things like ibuprofen due to a stomach ulcer and asthma so a natural alternative that actually works is fantastic! 

You can read more on Ankylosing Spondylitis HERE

Overall I cannot imagine what it is so like to be pain free. I can’t believe that this isn’t normal for everyone, I guess that is partly what caused me to suffer without diagnosis/help for so long. 

I would love to be able to sit or lay down without pain or being hyper-aware of my body, I just can’t imagine it! Instead, I’ll just guzzle a couple more Tramadol and snuggle with my dog 😍 xxx

On Robbie Williams and his hand sanitiser

Ok. I’m tired and in pain, as usual; I didn’t plan on writing a post today but I’m annoyed by media coverage and the public’s reaction, so I don’t know how long or well written this post will be but I need to write it.

The singer Robbie Williams has apparently grimaced and used hand sanitiser after touching the hands of some members of his audience at a show. The media are reporting this a Robbie being disgusted by touching “poor” or “normal” people. 
I’m so pissed off by this reaction in the media and by regular people. So often the same news/media outlets, twitter accounts, Facebook pages etc are telling us “it’s time to talk” ~ don’t be ashamed by mental health issues. Talk about it, raise awareness, don’t judge, be understanding.

And yet, when someone who has talked openly and honestly about his mental health issues outwardly displays behavior which is likely to have been related to those mental health issues he is derided, called names and laughed at. People are calling for the end of his career. 
I’m not a fan of Robbie’s music but I do admire the way he has spoken out about his mental health. I know only too well how my own hands feel at times and if I’d have been in his position I wouldn’t have even been touching all those people. That’s no judgement on the people; the hands are mine. 

So Robbie, thank you for having the strength to use your hand sanitiser and not hide away or be ashamed. 
Please remember that another person’s actions or reactions are not always a reflection or judgement on you. Please be kind.

Just exactly who is #LockedIn…?

This is a blog post written by a friend of mine regarding a very damaging campaign that you may see in your local Tesco. Please read x

the silent wave

The neurotypical population generally tends to perceive those of us on the Asperger’s/autism spectrum as “locked in”.  Locked in what?  Locked in where?  Locked in how?

To hear them talk, you’d think we were stuck in an invisible cage, trying to claw our way out.  And some particular “charity” groups are willing to go so far as to literally lock themselves in glass boxes for 50 hours in order to “prove” their point.

It’s called the “Locked In For Autism” campaign, and it sickens me.  It’s nothing but a cheap, cheesy, and disturbing gimmick.

Yes, that’s right; in a similar spirit as the “Ice Bucket Challenge” of a few years ago to raise awareness about ALS (Amyotropic Lateral Sclerosis, AKA Lou Gehrig’s Disease), a UK-based autism “charity” whose name I shall not mention (which smacks of a vibe similar to that of a particular US-based puzzle-piece organization, whose name I…

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Why I Left ABA

I’d like to reblog this post I came across, please read, it’s very important, thanks, Hankie x

Socially Anxious Advocate

Trigger Warning: ABA, ableism, institutionalized child abuse

[Image Description: A bright red door with a brass knob and a faded mail slit. To its left, there is a long, dark windowpane with some decoration and smudges. The door itself has chips in its paint and markings on it, despite the bright color. It is closed, possibly locked.]

When I first became an ABA Therapist, I was thrilled. I was actually going to use my psych degree, get paid more than minimum wage, and above all, make a positive difference in Autistic children’s lives. Or at least, that’s what I thought.

Now I look back, and the year I spent working in ABA is my single greatest regret.

When I left, it wasn’t a decision I made overnight. It was a long, difficult process, full of denial and confusion. I don’t enjoy talking about it because I did so many wrong things that…

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ABA, Abusive Bullying of Autistics

autisticzebra

I first time I heard of ABA, it was a newspaper article about parents of autistic children fighting the Irish government, trying to get funding for their children to attend ABA schools. At the time, I thought of it as a classic ‘David vs. Goliath’ situation, and I was naturally on the side of David. But, because my son was just a baby at the time, and I knew very little about autism, or that we were autistic, I didn’t think very much beyond that.

How things have changed. I’m now grateful that the Irish government won’t automatically fund ABA. Now, I’m not naive and I realise this is more about cost-saving by the government, as ABA is very expensive. But I’m still grateful as it limits the number of autistic Irish children being exposed to this so-called therapy.

My first realisation that ABA is not the wonderful thing it…

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OCD Cycle

I’m going to add more to this page at some point but wanted to at least have something down to explain what the cycle of OCD can be like and how easy it is to get trapped into.

ocd-cycle

An example of the cycle of OCD from the “Pure O” slideshow by OCD-UK

 

 

ITV help

This is taken from the ITV website, I’ve copied it out in case they take the page down, you can hopefully find the original here:

ITV This Morning OCD helplines


• NHS Choices – Obsessive Compulsive Disorder

nhs.uk

Comprehensive information on OCD from NHS Choices and links to external sites.

• Royal College of Psychiatrists – OCD

rcpsych.ac.uk

This leaflet is for anyone who has problems with obsessions or compulsions, their family and friends – and anyone else who wants to find out more.

• The Mental Health Foundation

mentalhealth.org.uk

OCD information

We believe it is important to involve the people who use mental health services and their carers in our work. We want to support them to have their say on the way that services are run, as well as to use their experiences to inform our thinking.

• MIND – Understanding OCD

MIND Infoline: 0845 766 0163

mind.org.uk

Link for an introduction to obsessive-compulsive disorder (OCD). The symptoms of OCD can be very distressing and can seriously disrupt normal life. This booklet aims to help people understand it, gives an outline of the kinds of treatment or help available, and suggests how people can help themselves.

• OCD UK

Advice Line: 0845 120 3778

ocduk.org

Compulsive skin picking

OCD-UK works independently working with and for people with Obsessive-Compulsive Disorder, their objective is to make a positive and meaningful difference in the everyday lives of people affected by OCD by providing accessible and effective support services and by campaigning for improved access and quality treatment and care.

• OCD Action

Helpline: 0845 390 6232

ocdaction.org.uk

Compulsive skin picking

OCD Action works for a society where OCD is better understood and diagnosed quickly, where appropriate treatment options are open and accessible, where support and information is readily available and where nobody feels ashamed to ask for help. We are here because OCD tears families apart and leaves people isolated and exhausted. OCD ruins lives. It is a sad fact that many people with OCD delay seeking help. They put up with it for too long, perhaps thinking that nothing can be done or just not knowing where to turn. OCD Action believes in taking action. We want people affected by OCD to seek help, to understand their treatment options and find the support and motivation they need to fight back. OCD is treatable, it can get better.

• TOP UK (Triumph over Phobia)

Office: 01225 422705

triumphoverphobia.com

What is OCD?

Triumph Over Phobia (TOP UK) is a UK registered charity which aims to help sufferers of phobias, obsessive compulsive disorder and other related anxiety to overcome their fears and become ex-sufferers.

• Anxiety UK

Helpline: 08444 775 774

anxietyuk.org.uk

About anxiety

Compulsive skin picking

Anxiety UK works to relieve and support those living with anxiety disorders by providing information, support and understanding via an extensive range of services, including 1:1 therapy. We work regularly with external agencies and healthcare professionals to improve services for those living with anxiety disorders. We also campaign to raise awareness of anxiety disorders.

• Anxiety Alliance

Helpline: 0845 296 7877 (10am-4pm Monday to Friday)

anxietyalliance.org.uk

Advice and support for sufferers of anxiety disorders, phobias, panic attacks and OCD. Support is available for friends and families of sufferers too.

• Young Minds

Parent’s Helpline: 0808 802 5544

youngminds.org.uk

OCD – OCD

National charity committed to improving the mental health of all children and young people, their Parents Information Service provides information and advice for any adult with concerns about a child or young person.

• SkinPick

skinpick.com

SkinPick is an American online centre for people suffering from compulsive picking disorders. It’s an evolving resource, containing a community, self help products, online counselling, providers directory and more. Everything related to compulsive skin picking disorder, under one “virtual” roof.