Tough Stuff: Dealing with unusual symptoms

Over at WEGO Health they are looking at the ‘tough stuff’ of dealing with chromic illness, or being a patient, caregiver or healthcare professional.  A lot of health activists have shared their posts delving into the daily struggles, challenges and other problems associated with chronic illness.

And as a challenge I though I would also share a post about living with my condition, and in particular about living with a condition which produces symptoms which cannot be seen and also which are unusual and not understood by others.  This post comes from a bad day experienced yesterday at a local group that I regularly attend.

With my condition, I experience constant dizziness as well as frequent episodes of vertigo with visual disturbances..  The vertigo as well as being spontaneous can also be brought on by external factors such as flashing lights, strobe lights – and perhaps the most unusual of them all high ceilings.  The tough thing about living with such an unusual symptom is the lack of understanding from family, friends and especially with acquaintances.  Often I am met with odd looks, or looks of astonishment and then am met with a dozen of questions about my condition, and how it makes me feel and so on.  Not easy especially when considering that the condition is unusual itself, one that is not written about and not even heard of amongst the majority of people.

The toughest thing about the dislike of high ceilings?  It’s definitely the limitations that it has placed upon my life – many of the new buildings for shops and retail parks are often very big with high ceilings – many people may not regard many of the places that I dislike as high but for some unknown reason I still feel bad when in such places.  Cinemas, shopping centres, supermarkets and so on are just out-of-bounds for me because of the way I become incredibly unwell whilst in them and even for hours afterwards.  Take yesterday for instance, we were enjoying a 50s and 60s afternoon at the group, I had known previously that the session would be geld in the main hall and so my Mum came with me for support and to look after me if I became unwell.  And I began to feel extremely unwell, the room felt as if it were spinning uncontrollably and generally felt spaced out, as if somehow I wasn’t really there, and also felt very nauseous.  The vertigo became so bad, as well as the visual disturbances in which I couldn’t really see properly, and so needed to go to the toilet to physically be sick – it unfortunately can really get that bad.

So, I would say not to judge others for the strange or unusual symptoms that we feel that someone else experiences because of an illness or disability – we all experience personal challenges or difficulties – something which may be considerably easy for you may be a real challenge for somebody else.


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