Trying to reel you in....

I am a little bit peeved, the meeting to the "Pain Clinic" went really badly! they asked me lots of questions and lulled me into a false sense of security before asking me if i wanted to take part in a "cognitive pain therapy". They kept changing their story about what this "therapy" was, they told me that i would have to come off ALL my pain medication which is a crazy idea and then that i would all be cured through breathing techniques. (Now in the real world my pain causes me absolute agony, okay i struggle with it even with the pain killers but without my medication i would be a ball of pain unable to move or do anything!) i mumbled a bit and told them that this would be impossible that i would not be able to function without my pain medication firstly for my migraines (last time i tried coming off my migraine medication i spent most of that week screaming in agony and do not wish to repeat this experience) he told me that i would not expect me to come of all my pain medication (eh isn't that against what he said at the beginning?!?!) They then told me it would totally be up to me, but that i would no longer need to see my physio or my rhemotologist or any of my specialists if i went on this "therapy" (well i may not be totally pain free at the moment but i am not keen on "miracle cures; this may work on people who do not have 'severe' conditions. However its taken me 18 months to get my physio, medications, rhemotologists and specialists after referrals and i don't fancy giving them up!) They also gave me a ton of leaflets which didn't even mention giving up medication at all, oh and i forgot the best part, i would have to give up medication for several months before the "therapy" starts, so i would be total screaming agony for several months... yay to the program!!! erm not!!

Also on Tuesday we went to the Fibromyalgia group and they had a speaker on myofascial release which is basically different forms of massage is also pressing on different pressure points to slowly eliminate pain and restore motion. The myofascial speaker saw also practised other forms of treatment like hot and cold stones, raike, etc. I descided to go lay on her treatment bed and she did a very small amount of myofascial release treatment release on my head, she was able to tell using her techniques where my migraine pain was exactly and through manipulation with her hands was able to lower the amount of pain i was in for a short period of time. Both Simon and myself were very impressed especially after five minutes of her "treatment" her sessions are in Woking which are very far from where we live and i do not travel well with my fibro, also the sessions were a little expensive but to be honest cost is not important as if pain can be lowered in five minutes and sessions last an hour. If we can find local sessions it may be worth looking into further in the future.

I have been having problems with our parking space at home, its still not marked with a disabled logo. Our block of flats is owned, everyone owns their flat, and their own parking space however no one parks in their own space, we have one space each. However alot of couples live in the flats and assume they can have two cars and park in two spaces so recently there have been hardly any spaces available in the car park and we have had to park on the road. I have been really really struggling walking that far. Today i called the housing officer and REALLY had a go at him as he promised me it would be done soon.. and now it is causing me more problems. He also mentioned he will probally write a letter to the other tenants advising the other tenants the disabled space is mine. He said he will try really hard to get it done next week if he can. If not in the next two weeks.. but i will believe it when i see it!!

I have also been in contact with the Independent Living Assocation (http://www.ilawestsussex.org/) who are going to put me in touch with social services for a assessment to see if i am eligable for direct payments for a carer to help out at home look after me when my fiance is at work and maybe help with the house a little... apparently thats what the guy on the phone says they can do.. he is also sending me out a leaflet. He seemed very friendly.

The problem is it is very difficult to know what you are entitled to!

I have physiotherapy on the 2nd of February so i have that to look forward to, dont know whats going to happen, my fiance works at the centre where the physio is going to take place so will save time and he will be able to drop me off and pick me up.

Feeling a little frustration my fiance is a nurse and takes time from work to take me to hospital appointments but he advises them in advance and also works the extra time in lieu but someone complained about him. Its not like hes doing something wrong. Grrr just made me a little angry.