I'm sure this is something many of us can relate to. I was very reluctant to use a walking stick, in my early 20s 20 years ago, but found it helped me hugely, and people were generally very understanding. It was also a clear visible sign that there was a problem they needed to make allowances for. I have cerebral vasculitis, in a very MS-like form. I always now use at least 1 stick, often 2, and sometimes my manual wheelchair.
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vivdunstan
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Excellent article. I now have a switch stick which is so useful. A combined walking stick and seat for when I want a rest. It is three pronged and very very light. Wouldn't be without it.
Oh the glorious days when I could walk with a stick. I now have to use a 3-wheeled walker. But this is an article that ALL non-stick users shouldbe made to read. excellent.
I wanted to message you but wasnt sure how. Maybe you can only message people who follow you? Anyways, I wanted to ask some advice if thats ok.
I know you finished your phd after developing vasculitis but you did it all the same and you are still writing articles. I was about to finish my phd in 2015 when i started to get il. They said I could finish it by publication and I had two more articles to do when I became much more ill in 2016. ATm any kind of work seems impossible. Ive been diagnosed with 12 different conditions in the last two years, including an autoimune condition. I also think I have quite a few of teh symptoms that you have, including extreme tinnitus and fatigue and brain fog. Im seeing a vasculits specialist to see if vasculitis explains some of the currently unexplained symtoms like livedo and muscle pains.
Anyways, atm doing two more journal articles seesm like an imposible mountain to climb, as would first have to do an original study (as my thesis is now a bit out of date). How did you manage to get the work done? And what impact did brain fog have on the ability to think and write academically? I guess Im looking for hope and practical ideas.
Thanks for any advice that you can offer. Hope you doing OK atm
Basically I am very severely affected with brain fog, memory problems, inability to read, concentrate etc. The only way I could complete the PhD and do stuff after is to work in very short bursts. Near the end I was doing the PhD in 1 hour chunks, spread far apart, no more than 5 hours total a week. Also my supervision meetings and final viva had to be restricted to no more than one hour long. Anything longer and I would rapidly get very brain tired, and lose the ability to hear, speak or think.
If you only have 2 more articles to do I would think it should be doable, even with a new study, but you won't be able to approach it in the same way as before you were ill. Try to grab good brief moments, break the task down into short bursts that can be done that way. It does depend how stable you are, though I did all my part time history PhD throughout a major relapse and masses of treatment including Cyclophosphamide chemotherapy. It can be done. But you may need to wait until you are properly diagnosed and any necessary treatment is started and underway.
If you want to email me about this my email address is viv.dunstan@one-name.org
That article looks like it should be very useful. And congrats on finshing the phd.
I think you are right about getting treatment sorted out. ATM my health seems to be spiralling downwards, with for instance walking becoming diffcult. And how the heck do u concentrate on academic work when you have 8 loud noises screeching your head! I think it was when I kept getting more tinnitus noises without any obvious external cause (like visiting a battlefield) that I started to suspect that there was some kind of systemic illness.
My subject is equality and employment law but I want to write an article (if the uni allows it to be one of the two articles) about autoimmune conditions, as its of course quite close to my heart.
Anyways I will definately take u up on the offer to email, as Im sure that your experience based advice will be very useful.
Best of luck! I've found over the last year that I've had to use 2 sticks more often than not. My Blue Badge renewal in August was vastly worse than 3 years earlier
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