Welcome to the penultimate post of this November’s month-long challenge, thanks to WEGO Health’s ‘National Health Blog Post Month’. Today, I have used a prompt from a few days ago instead of one of the prompt’s set out for today’s date. The prompt asks us how have our goals as a patient/advocate evolved?
In my opinion this is a great question, and I believe that often these goals change when a definitive diagnosis is finally given – especially when we are talking about a diagnosis of a chronic illness. Before, a diagnosis is given of a particular chronic illness there is often hope – hope of a diagnosis, hope of a miracle treatment and eventual cure, and then going back to enjoying life and achieving all those goals set out before illness reared its ugly head. Dreams of travelling, going to University for a career of your choice, eventually leaving home and getting a place of your own, and so on.
However, then the diagnosis is finally given – and then you find yourself with this chronic illness – one in which there is no treatment, or even cure. An illness, which is embedded so deep within the body, that it is never going away. Then the goals will inevitably change – some may have to be scrapped entirely, others the goals posts may have to shift slightly to be able to achieve the dream.
This is what happened in my life. I once had lots of goals – some I thankfully, have managed to achieve such as finishing University. Others, however I have not such as gaining a job and starting on the career ladder. After University, when all of those pressures that were on me all stopped, the deterioration in my health started to show itself – the dizziness became more severe, lasted longer and so on. By then, I was hoping to be able to start with some driving lessons, so I would be able to get myself a car, and then find that dream job that I had been wanting. With the severity of the dizziness, however, this was just not possible.
And so the goals shifted. From wanting to achieve a start to a career and using the degree which I worked hard for, this changed to getting through each and every doctor and hospital appointment; with every test and procedure I wanted to get myself closer to that diagnosis, treatment and cure.
Then came the eventual diagnosis eventually came in July 2010 – a long-standing brain stem lesion and spastic paraparesis. Finding out that there was little they could for me other than trying various medications to keep the symptoms under control. No real treatment, and definitely no cure. Inevitably, my goals had to shift dramatically, especially when the symptoms deteriorated further, and when my legs began to give way after standing for shorter periods of time. They went from being to find an eventual treatment and cure to just getting through each and every day; to search for the most suited medications for myself so I can live as near as normal life as possible.
And so there are my goals for today – just to get through each day as best as I can; to live a happy and as normal life as best I can; to make the group that I am secretary of the best it can be. Sure, I have other goals such as wanting to visit Italy, to meet my favourite author, but these goals might have to be on the back burner at least for now….
As always, would love to hear your thoughts and views, or messages of any kind! Are you a patient? Have your goals changed, and if so, how?