I had a fantastic afternoon out with my partner and the dog – we all love the beach – and for once I got to walk around on it WITH THEM!

Usually I walk a short distance from the car to the dunes, sit there while they walk along and then they come back for me. Occasionally I will walk directly to the water’s edge and back if the tide is not too far out to get close to the waves…

This time my partner suggested that she drive us to a different place that she discovered recently, about twice the usual drive. So I lay in bed all morning and waited to see if it felt possible. At 2pm I got up and felt I could give it a go. I have not been good in cars and have only once in the last year (again, quite recently) been in the car for more than 20 minutes each way, but this time it was 40 minutes and (on the way there at least) I felt so relaxed and untroubled by the usual neurological issues that make it so stressful that I almost forgot I was in the car at all! The way home was slightly worse, but still bearable despite going at 70mph or over which usually does my head in and makes me feel awful.

So, a good start. Add to that the beautiful warm day, a light breeze and a slight haze that took the burn out of the sun but left it pleasantly warm even on the coast which was quiet and still. Add to that beautiful rock pools to explore and a marked lack of POTS symptoms. Add to that my new spectacles which we picked up on the way which made me feel a little more unsteady due to the slight prescription change, but feeling stylish all the same. Add to that the pub overlooking the beach for refreshment and conveniences at the end, watching swallows fly right in front of us with forked tails and brown bellies flashing.



I honestly feel like I have been on holiday for a week, not for just a few hours. Holiday from illness and from the norm. Spending such nice time together as a “family” (inverted commas there not for Section 28 style pretend family; but for “family” of two women and their dog!). Holiday from the mundane and predictable. Holiday that brings hope of some change in the air. A realisation that try as I might to make the best of my limited life and value what it gives me; I have not felt that ALIVE for some time.


I am enjoying this recent trend of being able to get out of the house more. It feels so alien to me and so surprising; yet at the same time I can feel that I am getting used to it already, which is worrying. I am trying to take each opportunity as it comes and to enjoy this time. For now it is so joyful to be able to do some new things. The future is unknown (for us all!).

I had doubted myself sometimes over the last year in particular when life was so hard with little let-up. I thought: “Am I really worse than a year or two ago that I can barely go out at all, or am I not going out of fear or anxiety?”. I find it so hard to judge whether I am “better” or “worse” as main symptoms change and evolve which I partly why I write this blog: to help me look back, to remind me of what was possible at different times etc. I can now see that as soon as I truly feel able I jump at any chance I get. I should not doubt myself. It is hard to judge when to try something and when to rest, but I have been doing it for a long time now, and usually I DO know what is best even if I cannot explain the subtle difference in sensations in my body to anyone else. I do know that now I need to rest, happy that it is because I had a great time out and about.

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