Losses and hope

There’s a photo challenge running this month for CRPS awareness. Yep, Nervember has come around again and I’m sporting my orange awareness ribbon on my bag and have matching ribbon lacing my knee-high boots just to make it stand out more. Every year I’ll get asked about it and that’s the whole point. Raising awareness amongst people who wouldn’t come across the information otherwise. 🙂

One of the challenges is to post a poem or quote which describes the losses I have experienced as a result of CRPS impacting my life. And the very next day the challenge was to post a picture about hope.

The losses challenge resulted in me just writing from the heart, that bit was natural. The hard bit has been making myself post it.

The list of losses are initially from way back (I’ve come a long way in knowledge, pain management and personal growth these 16+ years) and the last loss is just 5 years ago (please don’t worry – I’m coping. The last line is less severe these days as I have worked to find new meaning in who I am. I am still grieving, but also living again).

Losing so much as a result of an acquired turn of health is enough to make anyone depressed but CRPS is known in the USA as ‘the suicide disease’ because without diagnosis there is no treatment, no support and crucially no understanding for a patient who has mystery pain which doesn’t make sense. People just want out. It’s too much. Too relentless. Often with no answers.

But loss of neurological function is different. It’s terrifying when you find out what’s happening but before that it’s just confusing. Everything is confusing. Basic conversations become really difficult because you just end up guessing all the time. And then you try to reply with something which hopefully is on the right lines to make some sort of sense. The likelihood of misunderstandings beginning and continuing is frustratingly high when we’re going through this.

Loss of family is so common for CRPS patients that it is surprising (but wonderful) when we meet a fellow patient who hasn’t.

It’s so hard to rise to the awareness month challenge and post this. I don’t like to focus on the old losses and I still struggle daily with the latest one. Egads! Okay,
here goes…

Suzy's photo challenge, 2015, Day 6


And because I can’t end this post on that note, here is the post about how I eventually managed to find myself and start to re-build my life:

The way forward for me after the greatest loss was to find who I am at my core. I had to anyway because loss of family meant a large part of my identity was no longer there. So I had to rebuild with me at the centre instead. It felt very alien to do so, and was rather like a rollercoaster ride but it was worth it.

Knowing who we really are at our core is one thing but having our identity built on that alone is quite another and it allows us to live that core openly and comfortably every day which results in a sense of peace and a kind of improved emotional suspension system which smoothes out the bumps. When we are truly ourselves resistance falls away. We can just be, because when our identity is rebuilt on who we truly are (instead of where we come from, who our family is, what others think of us, what we do/did for a living, societal role expectations and so on) there is no resistance. There is just us. Other’s opinions may affect our emotions but our sense of self is no longer affected by them. And from that point life kinda opens up. 

Suzy's photo challenge, 2015, Day 7





Healthcare wishes

Today’s WEGO Health Challenge is: ‘Votes are in – you won!
If you got elected [Prime Minister], what are the three changes you would make to healthcare [in the UK]?’ (wording amended to suit the country that I live in. 😉 )

1) In the UK the National Health Service (NHS) has been quietly privatised bit by bit in the background during that last few years. Many NHS sites are run by private companies already and very little is left to do to leave us without the NHS we have known for the past 50+ years. Up until now it’s been a case of private healthcare being available to those who can, and want to, afford it (as is health insurance), but every UK resident has had access to free healthcare since it’s birth in 1948. There are always some medications which aren’t covered by the NHS owing to cost (and they get discussed separately) but most forms of healthcare have been accessible for all. The privatisation of healthcare is going to change that massively over time as a healthcare system which is profit- rather than ethics-driven is a whole different animal. As Prime Minister I would want to ensure that free healthcare continued to be available to all and retain the ethics upon which the NHS was built for a healthier population.

2) I would ensure that doctors have to periodically be brought up to date in different areas of health. Research and knowledge moves forward over time and understandings of health conditions change, it is not acceptable to have doctors working on outdated premises as it can result in incorrect and mis-diagnoses. I do not expect general practitioners to have specialist knowledge of course, but to have a good general understanding of health conditions as they are currently viewed.

3) I would ensure that medical training includes a ‘zebra’ section about the conditions that appear paradoxical in their presentation and how they can be easily misdiagnosed as a common disorder, resulting in either no treatment or incorrect treatment. For example, basic information such as anxiety symptoms can be caused by anxiety, or sometimes by a disruption to the underlying mechanisms – never assume. (Oh and P.S. doctors are not qualified to diagnose psychological conditions such as depression so patients should be referred to a qualified clinical psychologist for appropriate assessment before writing something in their medical notes which is, effectively, merely a non-specialist opinion and may not actually be correct).

An illegal #4) (Ooh, I’m such a rebel! Mwoohaahaaa!) I would also ensure that the list of health conditions referred to by various organisations (such as disability benefits assessments, for example) are routinely updated so that descriptions of conditions are kept up to date and moved to more appropriate umbrella headings as required. (My experience of the benefits assessment recently is that ‘RSD’ is on their list of conditions, but the new name ‘CRPS’ is not – how can it not have been updated since the name change in 1994? Back then it was thought to be a common-or-garden ‘pain condition’ so when I spoke about it affecting the autonomic and central nervous systems they had no info’ on that, or on the auto-immune aspects, or on the neurological re-wiring effects including neuro-psych’ deficits. It is rated on the Department for Welfare and Pensions’ (DWP’s) list as such a simple condition that I was told that there was no need even for me to be assessed by a non-specialist general doctor with no knowledge of the condition, that a non-specialist nurse with no relevant specialist knowledge was sufficient. Only when I mentioned ‘dystonia’ did they realise that I needed to be assessed by a neurology based doctor (I ended up being assessed by a surgeon). And that was pure fluke that dystonia happened to be on their alert list rather than any of the other CNS and neuro’ issues that I have). This has to change. Working from a description of conditions where some have no bearing on the current medical understandings is completely ridiculous.

I am not the Prime Minister, however, and I don’t envisage that job being part of my future! But I still have hope for change, not because I think that the PM is going to suddenly wake up at 2am one day and have these things occur to him, but because people like you and I can help to highlight issues that need addressing. The NHS is so far gone I don’t know if we’re going to get to revert it back to what it once was anytime soon (although that doesn’t mean we shouldn’t try of course). But by raising awareness of our complex conditions we can make a big difference. The key is in using the skills we have rather than trying to do something which is tough for us on top of living with our wonky health day-to-day.

My skills are founded in psychology and research, plus I love helping others and sharing information so that naturally translates for me into research papers and advocacy work. But I am not able to work so I do what I can when I am able to do so.

For many other patients life is filled with things like working and being a parent so in those instances it is easier to look at things like sharing information, taking some papers to the doctor for them to update their knowledge, signing a petition to highlight a particular issue and so on. We each do what we can, and hope is in us, it’s in our hearts.

Brain power

Today’s photo challenge: “a picture of an item that gives you hope”!

My own personal hope is founded in my brain, though (whenever it actually works and for as long as it will do so!) because I spend time reading research papers and collating information that helps me to work with my doctor and local pharmacist to figure out what’s the best path forward for my particular array of health issues. My heart and my determination will undoubtedly continue, it’s ‘just’ the brain fog I need to work around, the brain is my hope! ;-P