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.

Frustrated.

I had an appointment with my GP yesterday and i tried to explain how much pain i am in, how i am having problems gripping, problems walking etc. I feel she wasnt listening to me. She didnt want to put my pain killers up or offer any advice or alternatives even though i told her the pain was keeping me up all night and the only way i was sleeping was through sheer exhaustion.

She just didnt seen interested at all. I suppose this is what happens when General Doctors dont know anything about Fibromyalgia and i suppose this is happening all over the country as the UK as a whole knows little about the condition. I really wish that i lived somewhere where people knew about fibro.

I have fallen once or twice a day for the last few weeks my legs are getting more and more painful to walk, the only thing that keeps me going is that after thursdays hydrotherapy i will be refered back to my physio and maybe they can do something about it as my GP didnt seem interested at all in it.

She did put my Gabapentin up although i must admit i havent noticed that it helped at all but my fibro seems to be getting worse and worse its so difficult to tell. She has put me up to 1800mg; 600mg 3 times a day.

Also because i spend most of my time in a darkened room, which have done since the beginning of my fibro because of the constance severe migraine which i have photophobia and sensativity to sound with she has prescribed me calcium and vitamin D tablets to stop me getting a deficiency probally could have done with these for the last 18 months though hmm.

I have my first pain clinic in Bognor on monday which should be interesting, i am still quite peaved that Worthing wouldnt take me and the reasons why. When i first became ill with the migraines they believed it was all in my head and they put this on my records which was so wonderful of them and when the other fibro symptoms followed and i had to be refered for pain clinic at Worthing they wrote back saying they couldnt help me as i had mental issues. At least my GP ignored this one. Stupid people grr.

The Fibro fog seems to be getting worse and worse i am struggling more in convosations to remember simple words like "microwave" and "car" and even peoples names; people in my family but only minutes later i remember them again, it makes me feel so stupid, almost to the point of crazy. I also seem to be developing my stutter back slowly which only makes me more concious of speaking. I am just frustrated overall i feel like i am screaming but no one is listening.

I am fed up everything i just want my life back.

Good.... and Bad....

I am currently waiting for the housing officer to put a disabled logo on OUR parking space, they really made me jump through hoops for that one, i had to send in a copy of my Blue Badge, send in a copy of our deeds to our flat proving our parking space, also a copy of my DLA letter proving my disability and finally a letter from my GP saying why a disabled space would be beneficial to me. The main reason is that well in our car park we all have allocated parking but no one actually bothers following it. Our space is right next to the front door of the block which is brillant because of course with my fibro i cant walk far but of course every other person wants to park there too! and we end up parking really far away and it ends up killing me walking that far and also recently somehow the car park has been full and we have had to park on the road! I am not sure how the car park has been full as half the people dont actually have cars, but i think that some people actually have two which is a little out of line! Well when they finally get around to painting the logo it will help alot as long as we dont get other people parking in it!

We contacted the Occupational Therapist and they have brought some equipment around, a surround for the toilet (which isnt really that great as it tips when you stand up!), a bath seat, raisers for the sofa chair i sit in in the lounge (which are brilliant but now its higher my fiance keeps wanting to sit in it :P) and also a special stool which is really handy for when i am washing and brushing my hair in the bathroom. I am also on the waiting list to see the "actual" Occupational Therapist which is about four months and they will be able to give me advice and help me with some other items etc which will be useful.

I also got my free prescription card which means i will no longer have to pay for prescriptions based on the fact i can not go out alone and can not collect my presciptions without someone with me or collect them.

Over christmas i took some photos with my digital camera but my hands have become very shakey with the fibro and almost every picture came out blurry, a friend recommended getting a new camera with anti shake and decided to get the Canon A570 ( http://www.kenrockwell.com/canon/compacts/a570.htm ) which takes really amazing pictures as shown by the above photo

My legs and hands are still continuing to get worse , its getting harder for me to grip i have to put alot more effort into gripping and my hands keep spontaniously releasing when i am holding onto items so i am dropping things like forks, crutches etc which is not good. I have fallen several times over the last week, four to be exact it is happening more often. I wasnt using my crutches around the house all the time but leaning on the walls but now i am having to rely on the crutches all the time both at home and outside. But with my hands getting worse i am struggling to hold them, two of the falls this week have been with the crutches both a mixture of my legs being bad and also my hands struggling. The pain seems to be increasing however the numbness seems to be going a little.

I had my fifth hydrotherapy session this week it is suppost to be helping but i am finding it harder and harder each time and afterwards it hurts more and more both in and out of the pool. I take pain killers before i start but i am worried about taking too much as i dont want to become to drowsy in the pool. This week my hands and legs became so weak and painful by the end of the 30 minute session i was barely able to stand in the water whilst holding onto the side and it was obvious to both myself and the physiotherapist/hydrotherapist that i was not going to be able to walk up the steps out of the pool holding onto the rails (something i am usually able to do with great difficultly and very slowly but i am usually able to just about to maintain my diginity) but this time i was too weak and in too much pain. We agreed, myself somewhat begrudgingly that it was safer if i was hoisted from the pool. They did their best to maintain my dignity but i truely felt that i had given up and that i was broken and defeated.

At the rate my fibro seems to be getting worse i dont know what is going to happen i have one more session left and i hope and pray that i dont have to be hoisted again as it was most unpleasant but after that session i go back to the physiotherapist. I am fed up with the pain, i am fed up with hitting the floor and i am fed up with the bruises i dont think i could be more frustrated if i tried i feel truely defeated and hang my head like a wounded animal!