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Hughes Syndrome APS Forum

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Realising your Potential - taking control of your illness?

12 Replies

Hi

Last night I went to a class called "Realising your Potential" It was run by School of Life in London ( theschooloflife.com ) and run by a chap called John-Paul Flintoff.

I was really there to further explore my thoughts on New Zealand and my career path and the need for meaningful adventure in my life... however I thought many of the points that we discussed were particularly relevant to getting over an illness and / or getting on with your life...

Firstly he asked us to arrive with three "seed ideas". For us lot that could be to get active / walking, start working again, reclaim our lives, do something to challenge our brains, take control of the illness, talk to our doctors and let them know what we want.... whatever ever it is for you, keep it in your mind.

He asked us what was stopping us from doing our thing... for most people it was fear - the fear of losing control, failing or what other people thought... By saying your fears aloud to another person, we give ourselves permission to own the problem and find a solution. He's right, as soon as I said that I was worried about what other people might think, I realised that this is my life, and I need to do what's best for me!

He then suggested that we discover who are our supporters, write your name in the middle of a page and write down your support network around it, the more supportive they are to you the bigger the arrow between you, if support goes both ways then use two arrows... write people down that you support but who do not support you back. Now look at the most supportive people to you, who are the ones that will be the most helpful with this idea. These are the people you need to talk to about this idea...

We discussed that all big changes are made from many tiny steps, so recognising the first tiny step you need to take is crucial. This could be talking to the doctor or asking a friend to come with you so you can tell the doctor what's really bothering you about your care, or it could be going for a short walk, or writing a letter to someone who has helped you in the past....

At the end of the session we were asked to stand up and say one thing we had taken from the class, what our idea was and what we would do about it in the next 24 hours (the theory being that if you can't do anything - make a phone call, research, book an appointment, walk a few steps etc - in the next day, what makes you think the next day will be any different!?)

Finally, we discussed that this was today's idea - it might be THE idea and motivate you into a whole new life or just a new hobby but tomorrow you may have a different thought and there is absolutely no shame in that!

It was a really great course and I recommend it to any Londoners, however please have a think about what you want to achieve in your own life and see if the steps above could help you!

Hope this helps someone - it helped me

Take care

Tx xxxx

12 Replies
laserlight profile image
laserlight

Hi Tasch

What an abundantly positive blog you've posted. Fantaschtic! It's bursting with great strategies and I'm sure those who put them into practice will experience great results, as you are doing. Well done you and big hugs. If you haven't already read 'The Magic of Thinking Big', by David Schwartz, I think you'd find it spot-on helpful and uplifting. Your blog is one to watch.

Best, John X

in reply to laserlight

John

Thanks so much for your kind comments. I really feel that we could all do with a bit of positivity and sometimes the site can get a little down (understandably). I read loads of psychology books in my spare time - I started as a way to recover from Post Traumatic Stress Disorder after ending up in a coma due to a massive internal bleed...!

The book I initially found helpful to explain things to me was Molecules of Emotion by Candice Pert - taking about WHY we feel the way we do... I found it really useful. These days I tend to read more about the psychology of happiness and love and other things. The more I read the more it strikes me that we are responsible for how we feel and so we need to take some action... that's why I do as many activities as I can...

Thanks for the book recommendation - I will be putting that on my wishlist. I would also like to recommend a book called F**k It Therapy ( thefuckitlife.com/therapy.htm ) as it is brilliant at describing your power over yourself! Apologies if the link causes any offence!

Thanks again

Tx

stillwaiting profile image
stillwaiting

Thank you for sharing this Tasch.

Today I am very very tired and have been working out strategies to deal with this so I can get back into work. I am absolutely determined despite some of my friends thinking that I am not going to be up to it.

So to come here and have a cheerleader, on my side, was great - lol.

Thanks.

lynn.x.

(PS would it be ok to copy and paste so I can print it off and work through your ideas?)

in reply to stillwaiting

Lynn, Of course you can do that!

I would also be honoured to be a cheerleader for you! Please don't forget this site as one of the contributors to you support network. If you're having a tough time but want encouragement then shout. We are here to empathise, sympathise but also to celebrate and encourage.

You will be able to get back to work, just remember to be kind to yourself and on bad days maybe make the steps slightly smaller!?!?

Good luck, let us know how it goes!

Take care

Tx xxx

LipsNClips profile image
LipsNClips

Thank you for posting this today! You have no idea how much I needed that message at this very moment!

in reply to LipsNClips

My pleasure!

So pleased that it's useful for someone!

Take care

Tx xxx

laserlight profile image
laserlight in reply to

Tasch. You, of all people! Watch your sign-off.

"Take care" X3 in this great blog alone.

Surely, Take RISKS!

Especially you.

Take risks

John X

Zezes-nan profile image
Zezes-nan

Thanks for posting, never thought to put this group as part of my support network . I know I don't post that often but I read all the posts to see how everyone's doing

Some of the stuff that you said you did in the class was covered when I went on the 6 week 'Expert Patient course', they are run all over the country and well worth going to although everyone did look at me blankly when I said I had APS.

Hope everyone has a good Bank Holiday weekend

in reply to Zezes-nan

Thanks for the feedback, glad to hear that the course is useful too. I asked my lovely, wonderful GP about whether I should go but she thought I was probably ahead of the curve on these things...

What else did you learn from it?

Tx

Rhian21 profile image
Rhian21

Loved this posting, thank you for sharing :)

in reply to Rhian21

Thanks for saying so, very nice to hear.

Tx

Zezes-nan profile image
Zezes-nan

Hi Tasch

The course was run for a couple of hours on a Saturday for 6 weeks, trying to remember what we covered we did relaxation, pain management, day to day living; exercise; how to deal with health professionals; staying positive; dealing with long term health conditions; then each week we had to set ourselves and achievable goal and feedback on how we did at the start of the next session. There was quite a mix in my group people with diabetes, tinnitus, asthma, depression, MS, heart problems the tutors themselves had long term health problems.

I went about 2 years after being diagnosed with TM and Hughes and although I knew a lot more about my conditions I got a lot out of the group as it was nice to have a safe place to offload each week without having someone judge or being critical.

Have a look at their web page: expertpatients.co.uk they do an online course and I think you can self refer.

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