4th July...busy week ahead

Hi

Been away to Centre Parcs....marvellous holiday and felt pretty good. We have all noticed that fresh air and moderate exercise really helps as a management strategy..just have to work harder on motivating myself to do something everyday.

So today I cycled to 20 mins ( I was very sweaty and not at my most attractive). I felt better for it though and it did reduce the beastie in the attic's activity.

My chronic pain clinic appointment was moved from 3rd Aug to tomorrow due to a cancellation..so I bit their hand off for the earlier slot. I know they can't give me any more drugs but I should be working with a pain management psychologist to work out lifestyle strategies..improving quality of life etc.

Then Weds off for cranial fumblings to try and free my seized neck up...

Ah well feel a bit overwhelmed with appointments but hopefully things will start to calm down in a few weeks time...laughs...think I am starting the rounds with appointments for the kids then.

Starting to look forward to the school holidays too but need to get things more organised.

Hope the rains not too bad tomorrow so I can get out again on the bike.

Wish me luck

Jane
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wow go girl - its amazing you are out and on a bike - and you stayed on

Take one day at a time - the pain management sounds good - will be interesting what they say.

Yeah come alone way since needing a trike..now back on two wheels (most of the time anyway lol).

The pain clinic want me to do 50 hour course with them. It would mean 2 days per week over a month on an intensive course. Obviously that was quite a frightening thought but when the guy explained what was involved and how I could benefit I decided to go ahead.

It won't be until the winter time but a range of people would be involved in as he put it 'getting your life back'. He said he was worried that if I didn't do it how bad I would be in 5 years time.

Firstly he's referred me to a specialist physio who is going to help me get fitter (a gym membership is going to be arranged for me).
He said the physio is specific to people with untreatable pain so will be different to what I have had before.
Then there will be counselling and a dedicated nurse to help me etc et..the amount of support offered blew me away. The nurse and physio are in addition to the intensive course later on this year.

The psychologist was amazing and really had a good angle on the impact of pain and it was nice not to have someone shrug and say 'we can do no more for you'.

I know I have a lot of daunting things to overcome and it will be stressy and scary at times but I actually feel more hopeful that life can be more enjoyable in the long term.

I'll keep you all posted obviously..but this is a new initiative for chronic pain sufferers and the guy I saw (from the USA) is pioneering this type of treatment and the team seem very dedicated and committed to helping people.

Heads hitting 9 all day long so off for a sleep now..am worn out.

Love to all

Jane
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That sounds great Jane, making me dizzy just thinking of it, haven't been out on a pedal bike for years, although last time I was on a motorbike is now 3 years, but all good things have to come to an end.

Went out to a friends 50th Birthday party on Saturday, and suffering for it now, just had a couple of drinks (first since Christmas) and my head was worse than a hangover on sunday.

It's interesting on what you say about the pain management and what the psychologist said, it gives you a positive outlook, I saw a neuropsychologist last week, he was more concerned on my stroke and the effects it had on me, but he wants me to see my neurologist in 3 weeks time before he decides on a path to take.

Graham

wow I am so impressed - although that does sound quite intense and I guess a bit daunting, its loads of help - I bet you cannot even imagine how good this could be

I am very interested on what the gym membership will involve - ie how they are going to get you fit without all the hard work...

How it was explained was they were going to do stuff in very small steps and give me the foundations to build on.

He also said if I feel happier then it has been proven to benefit the persons health and conditions overall..which is very understandable but hard to achieve on your own when you are constantly shattered.

If I did the stuff on offer on an individual basis with each professional then we worked out it would take over a year to get through everything..so the course and the back up appointments etc were my preferred/only option. Plus he said I would benefit from it quicker and he was concerned things had been left long enough already etc.

It is intense but I feel (as does the pain team) that this is the best and frankly only option I have. On the plus side the fact I have accepted my condition is no longer treatable is a big help in facing up to the things I CAN help myself with.

To Graham..neuro psychs do usually tend to focus on the stroke/parkinson etc elements of neuro illness...they don't seem to get much experience of migraines in my personal experience..I would love to be proved wrong here so will happily be corrected. I hope you find it helpful which ever way they tackle it. Most are thoroughly good eggs and mine was a big help last year, when I was particularly struggling.

Jane
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