Hi All, I haven't posted for a while so thought I'd sent a quick update. I'm just back from a jaunt to London for my daughter's birthday treat. Went to see The Book of Mormon and laughed til I cried. Went on a gin tour round a tiny distillery started up last year and had the best G&T I've ever tasted. Dragged round countless shops and markets and ate far too much. Hotel was in a great position - a walkable distance from Hampstead so I could pretend to be sophisticated and Camden so I could pretend to be trendy. Don't think I fooled anyone on either count! The bed at the hotel was the usual slightly lumpy spring type. Always a problem for me as I often have trouble getting comfortable on my memory foam jobbie. Partially solved the problem by sleeping on top of the duvet with a blanket for warmth. The lack of anything like a comfy supportive seat anywhere we went was more of a problem so by the end of the three days I had screaming back and throbbing feet but my daughter declared it the best trip to London she's ever had (no mean feat as she has a school friend living in a very trendy area and regularly visits) so worth all the discomfort in the end. My son kindly came to stay to look after the pets and the kitchen looked like the set from Men Behaving Badly when I got home. He's usually pretty house-trained but has had a rotten couple of weeks being told the store he manages is being closed and then that the company that bought the company when it went into receivership is trying to screw him out of most of the redundancy money he's due. Poor boy is having to seek legal advice and fight his case to avoid having to spend two months travelling to Cambridge to work and then get a pittance at the end of it. Lots of long-distance counselling while I was away. Had a call from the hospital while I was in London to make an appointment to see a spinal specialist (referral no 6 and counting) to see why I've lost height and my rib cage has twisted when they've said my scoliosis wouldn't have worsened after several years of being stable and I don't have any form of inflammatory arthritis that could cause spinal problems. Also due to see the oral health specialist next week to see why I keep getting blood blisters in my mouth and throat so still wearing a groove in the road between my house and the hospital! Currently still languishing in bed contemplating the laundry mountain I have to tackle some time and the weekend jaunt to the supermarket I have to make if I want to avoid living on cereal and water all weekend. Tired and achey but still in a bouyant mood. Marvellous what a change of scenery can do. Nice to get away but sooooo nice to get home Have a lovely relaxing weekend all xx
I may never walk again but we had a wonderful time. - NRAS
I may never walk again but we had a wonderful time.
Sounds like youve had a fantastic time. Whenever I've had times like that I've suffered afterwards but as you say,it's sooow worth it. X
very funny and good blog Misty, that is a great commendation from your daughter, good for you for being so up for it.
Your poor son, I do hope he gets the right redundancy package, isn't it bad enough to lose his job despite trying to dispute his redundancy, I do not like the way big powerful companies feel that they can push people around.
Take it easy with all the housework and revel in your good time for a while more.
Up until a couple of years ago I had full mobility and my passion was following the coastal path in East Sussex. nothing beats clean sea air and views that are out of this world. RA has spread through my joints like a rash. Now I cannot walk at all. I have walking sticks, a rollator and wheelchair. Transitioning from one to another is torture. I cannot stand or sit without considerable help. The pain is 24/7 but I am blessed in having an amazing partner. So now the RA is in my shoulders, elbows, hands and fingers so walking with sticks and rollator will become a thing of the past. It is still incredibly hard to come to terms with my mobility but at the back of my mind is hope. I was wondering about Adult Social Services, they should be in your area, contact them and ask for an assessment. They have done wonders for me and are continuing to help me. They won't take away your pain but they will do all they can to assist you in your daily life. Ask your doctor for a referral to physiotherapy, again I don't know if it will help but anything and everything is worth a shot if you think it might help you. I really hope that you get the help you need and soon. Take care.
Thanks DandyLad, one of the 6 referrals was to physio. They're being wonderful - I'm part way through a course of hydrotherapy and it was them who arranged fresh X-rays of my spine and then asked my GP to refer me to the orthopaedic surgeons. So, even though rheumatology have been pretty awful this time round, I'm getting the help I need for now in a roundabout way. I'll keep social services in mind. x
Thanks for your reply. I envy your hydrotherapy, I've asked my RA Consultant for a referral to a unit in East Bourne or Haywards Heath, can I ask where your hydro is? When I lived in Devon and was mis-diagnosed there was a hydro at the hospital in Torquay, it helped me so much so much that it really did change my life. I wish you good health and thank you again for your reply.
I'm in Norwich so rather too long a commute for you I'm afraid! I'll really miss the hydro when it's over. Sadly this isn't one of the areas where you can pay to continue sessions as the physio team have encountered too much red tape when thinking about setting up.
Hmmm yup it would be a bit of a trip. You would have thought that if a therapy is working for you that it should be continued. Seems that those above who run hospitals have no idea what it's like being a patient or as said, a service user. We don't have much of a physio dept. here in Brighton but I am pushing for hydrotherapy and to get going soon. These people are playing with our lives... right have had me moan, sorry about that.
Enjoy the rest of your day and thanks for the messages.
Finally got my Neurosurgeon appointment! 
back from London
I had the op not the one I went in for but hey ho
Spinal Consultant appointment.
