You know how sometimes weeks can be both brilliant and hideous?
Last week was one of them.
It was great. Guest blogging for Really Useful Stuff, enquiries about using my cartoons, more guest blog enquiries, possible retail outlets for my stickers and a 'BBC ouch' journalist telephone interviewed me. Which, I have to admit is pretty flattering. So fingers crossed within a week or so there might be an article on me somewhere!
Plus my cartoon of Tanni Grey-Thompson and her lift failure got re-tweeted by Tanni, AND she asked if she could use it on her website.
What more could I want? What a successful week! How marvellous!
Except...
It was also 'jab week'. Every 3 weeks I have an Octreotide injection to help manage my (fairly severe) POTS. So it was a week of increased symptoms as the medication levels are at their lowest. Usually I manage this OKish by keeping a close eye out for my 'indicator symptoms' [minor symptoms which I get before I reach the 'shutdown' level of stroke-like, total-zombie symptoms] and take evasive action where needed (adjust posture, temperature, salt/fluid intake, diet, activity levels etc.) And thereby get through it without major mishap.
But with all this going on, well, you could call it a pacing fail.
My brainpower slid gently down hill, I spent more and more time on the floor as blood flow failed to meet demand or heart rate did the River Dance, my coordination went on holiday and my ability to follow a conversation and respond intelligently to questions faded to a cherished memory.
I have very little recollection of what I told the journalist. I do remember I kept completely forgetting what I'd been asked, and what I'd said - and that the only way for me to give any semblance of an intelligent conversation was to lie on the floor with my eyes shut, and hope my adrenaline and determination lasted.
I did try to pace, honest I did, but I think I need to be stricter with myself next time.
So if you contact me in jab week, be warned that I may reply with "not right now, ask me next week" or "can you send me that in writing?". It is nothing to do with you, just my trying to do a better job of recognising my limits so I don't hit them like an express train and suffer the consequences. And don't expect a coherent explanation as to why I'm being evasive - because, quite simply, I probably won't be capable of giving one.
[and before I get any 'oh poor you' responses, I would like to point out that a) I will be fine - it is a normal reaction to my being daft b) it was my own fault for not pacing, c) it was fun, and d) I am still a tiny bit unrepentant.]
Last week was one of them.
It was great. Guest blogging for Really Useful Stuff, enquiries about using my cartoons, more guest blog enquiries, possible retail outlets for my stickers and a 'BBC ouch' journalist telephone interviewed me. Which, I have to admit is pretty flattering. So fingers crossed within a week or so there might be an article on me somewhere!
Plus my cartoon of Tanni Grey-Thompson and her lift failure got re-tweeted by Tanni, AND she asked if she could use it on her website.
What more could I want? What a successful week! How marvellous!
Except...
It was also 'jab week'. Every 3 weeks I have an Octreotide injection to help manage my (fairly severe) POTS. So it was a week of increased symptoms as the medication levels are at their lowest. Usually I manage this OKish by keeping a close eye out for my 'indicator symptoms' [minor symptoms which I get before I reach the 'shutdown' level of stroke-like, total-zombie symptoms] and take evasive action where needed (adjust posture, temperature, salt/fluid intake, diet, activity levels etc.) And thereby get through it without major mishap.
But with all this going on, well, you could call it a pacing fail.
My brainpower slid gently down hill, I spent more and more time on the floor as blood flow failed to meet demand or heart rate did the River Dance, my coordination went on holiday and my ability to follow a conversation and respond intelligently to questions faded to a cherished memory.
I have very little recollection of what I told the journalist. I do remember I kept completely forgetting what I'd been asked, and what I'd said - and that the only way for me to give any semblance of an intelligent conversation was to lie on the floor with my eyes shut, and hope my adrenaline and determination lasted.
I did try to pace, honest I did, but I think I need to be stricter with myself next time.
So if you contact me in jab week, be warned that I may reply with "not right now, ask me next week" or "can you send me that in writing?". It is nothing to do with you, just my trying to do a better job of recognising my limits so I don't hit them like an express train and suffer the consequences. And don't expect a coherent explanation as to why I'm being evasive - because, quite simply, I probably won't be capable of giving one.
[and before I get any 'oh poor you' responses, I would like to point out that a) I will be fine - it is a normal reaction to my being daft b) it was my own fault for not pacing, c) it was fun, and d) I am still a tiny bit unrepentant.]
Hi
ReplyDeleteYour comments are so down to earth, I fortunatly have no disability but understand totaly as was 'disabled for 3 months' due to an operation on my ankle when I was not allowed to put my foot on the floor at all. I remember the looks and how hard it was to 'walk' any distance on crutches, I also remeber a lady who could not stop starring at me and then told me why; her son had a bad motorbike accident and had lost a leg and she looked at me struggling with my cruches and thought how hard it would be for her son; which made think how lucky I would to be able to throw the cruches away after just 3 month. How lucky I feel at the understanding of just being able to carry a meal and a drink into another room and walking up and down stairs. I am very lucky the operation worked and I'm back on my own two feet. Keep up the good work as 'us normal people' do not always understand how difficult it is for a person with even a small disability.