PoTS Awareness Day - Dysautonomia Awareness Month 2019

Today is the first PoTS Awareness Day. 

"Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating health condition. Simply standing can be a challenge for people affected by the condition as their body is unable to adjust to gravity. PoTS is due to an abnormal response by the autonomic (automatic) nervous system ad is characterised by orthostatic intolerance (the development of symptoms when upright that are most relieved by lying down). Symptoms include palpitations, lightheadedness, fatigue, sweating, nausea, fainting and headache, ad are associated with a persistent increase in heart rate from the lying to up right position." - PoTS UK

I got a diagnosis of PoTS this year. I struggle to stand for even short periods of times so I often need a wheelchair to help me manage my symptoms (alongside my other illnesses). When I stand my blood pressure drops and my heart rate increases to try and compensate. For me my PoTS goes alongside having M.E. and my hypermobility disorder which is very common.

The PoTS UK website has really helped me to understand the condition as well as helping me find ways of managing the condition.

Though there is no cure for PoTS it can be managed by lifestyle changes and for some people alongside this medication.

For anyone interested in wanting to know more about PoTS or has the condition themselves or if you are affected by the condition such being a carer for someone wit the condition or you are a care professional I'd defiantly recommend checking out the PoTS UK website. 

Having an Invisible Disability

My health problems are real, even though other people can't see it and what others do see, like my wheelchair or crutches or orthotics is on a tiny fraction of what I'm dealing with. Things like pain and fatigue and all my other symptoms, like a dislocated joint (unless I'm waving around a x-ray), migraines, hypersensitivity, depression/anxiety and autistic traits can't be seen, only invisibly felt or experienced.

"You don't look sick" I've lost count how many times I've heard that over the years. It's not a compliment when someones says those words to you. Those words I find so funstrating to hear as I wish I could hand over a box of all my invisible suffering and it makes it hard for your suffering and trying to have your ill health taken seriously.

"Looking well" takes a heck of a lot of effort and it can be a burden to seem "okay" to the outside well and it's almost something you have to do because you have to live out your life through your suffering. If you spent your days acting out your internal sickness you would never get anywhere.

Often care professionals don't take your symptoms, like pain, seriously because you've become so accustomed to masking and living with them. Even when I've been rushed into A&E with something like a badly dislocated hip internally I'm shouting/screaming/crying, but I've learnt that that get's me nowhere, so I quietly and subtly deal with the pain and she I'm asked how I'd score my pain I'm not believed because I'm not shouting or screaming or crying.

People around you question you, why are you not "trying hard enough" or "pushing yourself" to get a job (or some other part of adulating) because you "look" capable of working. When in fact they only see me, which is briefly, is when I'm having a "well" moment because I've rested and recharged and tried my hared to summon my "functioning human" mode to meet that person. And then when they leave I can go back to my usual position of being curled up in a ball on the sofa too tied to lift my head ill mode externalising what my body s screaming about internally.

And even though I'm a pacifist when people tell me "you don't look sick" or "you need to try harder" what you really what to do is punch them.

It's okay to not feel okay. And if you want to get upset or angry then go for it!

There is no stereotypically "ill person" - 19% so almost 1 on 5 working aged people in the UK are disabled (Scope) and the vast majority of those people's disability will be largely invisible. Each person's disability is unique to them; even two people with the same illness will not have the same difficulties as one another.

Links and References

• Scope - Disability Facts and Figures
• Invisible Disabilities Association

Guest post by Mark on disability & searching for his faith

I had a stroke in my mother's womb and as a result I was born with paralysis down the right-hand side of my body. No operation could 'fix' me and only intensive physiotherapy in childhood could help improve the functionality of those muscles that had been weakened by the stroke.

I 'coped' reletivly well into adulthood. I went to University and had a career working as an IT as well as being a qualify lecturer working in Further Education teaching adults with dyslexia.

However, eight years ago, aged 35, I suffered what I can only described as a 'second stroke' that caused immense pain in my muscles and severely affected my mental state. I've read that people born with disabilities have difficulty coping as adults when their condition worsens. This was defiantly true in my case. I had to stop working and concentrate on recovery. However, I entered into a black hole of depression and as a consequence made some very poor life choices.

By the time I turned 40, I was coping a lot better physically but mentally my mind still felt shattered. It was at this point that I decided the best way forward was to find faith in something I could believe in. I'd previously experimented with Buddhism and Christianity but never really felt  'connected' to either.

From a local library, I read about 30 faith-based books before I came across Quaker Faith & Practice. When I read the introduction and the first chapter, Advice & Queries, a tingle of excitement ran down my spine. I carried on reading and when I got to the page 'Ways of Seeking' I decided there and then I was going to be a Quaker.

What appealed to me the most is that the Quakers have no creed. There is nothing to say a Quaker must believe this or that. If you believe in God or not, it's your choice. Every Quaker must speak for themselves and seek their own spiritual path.

What binds Quakers together are the testimonies. These are most commonly referred to as SPICES:

• Simplicity

• Peace

• Integretity

• Community

• Equality

• Stewardship / Sustainability

Quakers live their everyday lives through these testimonies, interpreting them as they best see fit.

For me, it is the Equality testimony that I find most powerful. When the Quakers began in mid 17^th century England, it was the Church that decided who should and shouldn't receive God's love. The Quakers rejected this and adopted the belief in Universal Love.
It may seem strange to think in this day and age, but at the time Universal Love was a highly controversial belief. This was because it took power away from the Church of England who claimed to have the authority, on behalf of God, to say who was and wasn’t worthy.
In essence, Universal Love means equality. You have an equal right to love and be loved in return no matter who you are. For me, I find an acceptance within the Quaker community that I've yet to experience elsewhere.

I'm now 43 and have been a Quaker for almost four years. My mental health has improved and I'm probably happier in my own skin than I have ever been.