I've not blogged for a bit because life has been rather hectic. In the past two weeks I have had my assessment for rehab at Stanmore, travelled down to Swindon to see a doctor about my dry eyes and mouth, and I've had an MRI scan of my head at the Hallamshire Hospital in Sheffield.
The Stanmore assessment went great. They gave a presentation explaining what the course was all about. It's a pain management course, they don't diagnose or treat conditions, they teach you ways of coping with your pain. The course is held at two locations, a local hotel and on the ward at The Royal National Orthopaedic Hospital. If they accept you onto the course they choose the location. I really hope they put me in the hotel because even though the staff were all very nice, I don't fancy spending three weeks in hospital.
I had a personal interview with a physio and an occupational therapist. They went through my questionnaire and said I was pretty typical of someone with Ehlers Danlos Syndrome. We worked together to establish some goals, I'd love to be able to ride my bike, play my guitar, do some light gardening and most importantly learn how to pace myself so I don't collapse in a heap of pain at the end of each day. I'm still waiting to hear the outcome of the assessment. They have a team meeting to discuss each case and then write to you. The great thing is, even if you are not suitable for the rehab course they don't just drop you, they will suggest alternative avenues to pursue, such as outpatients treatment or consultant referral. I'm praying for a place on the hotel course. Wish me luck!
I went to see Dr Elizabeth Price in Swindon about my dry eyes, mouth and throat. She was recommended by the British Sjogren's Syndrome Association and it was well worth the trip. She took my history and tortured me by putting strips of blotting paper on my lower eyelids. Yes, it is as bad as it sounds! She left them there for five minutes to see how many tears I was producing. The wetness on the paper was only 5 mm so based on that and my other symptoms such as tooth loss, decay and gum disease, she diagnosed me with Sicca Syndrome.
She didn't call it Sjogren's Syndrome as previous blood tests show that I don't have auto antibodies, which is a good thing because it means my symptoms will not be as severe and I am not at risk of developing cancer associated with Sjogren's. she didn't want to do a lip biopsy as it wasn't necessary and the result wouldn't influence her treatment plan.
Dr Price wrote a whole long list of things that may help me, such as eye drops and ointment, high fluoride toothpaste, mouth gel, a nose spray and I need to continue on the Hydroxychloroquine, which I have been taking on and off for the past four years. My GP is going to love it when she gets her letter! I'm on so many drugs already, I'm just glad I bought a pre-payment certificate so I don't have to pay for every prescription otherwise I'd be broke.
I got a surprise letter from my neurologist. The last time I saw her we decided not to have another MRI of my head seeing as I'd already had one at Bassetlaw Hospital. It turns out that she changed her mind after seeing the MRI as the view was "suboptimal". The neurologist also put a name to the symptoms I've been having with my hands. When I grip something tight my muscles don't relax properly when I let go. She said it was Myotonia and it's a known but rare complication of Ehlers Danlos Syndrome.
I had the MRI, I wasn't in the machine too long and I'll have to wait for the results. Hopefully it will show I don't have Chiari and my brain is sitting where it should be.
As if I haven't been busy enough I have also been battling with Social Services. I have a Direct Payment which allows me to purchase the services of a personal assistant, a cleaner and a child minder so I can meet my care needs and live an independent life. I have annual reviews where the social workers are supposed to make sure that my needs are being met, but usually it involves fighting to prevent my package from being reduced.
I had a review in February but I hadn't heard anything back from the social worker until I got a letter from Nottinghamshire County Council Finance Department. My Direct Payment was being cut by £46.95 per week and they have given me one working day notice. I was livid, I complained and I was told that everyone is having their packages cut because of budget cuts.
The manager was away so I couldn't take things further but I was told that I am not allowed to have my cleaner in for 6 hours a week. Now I live with my husband and three children, and as you can imagine six hours a week is a drop in the ocean when it comes to doing all the laundry and keeping the house clean, but apparently Nottinghamshire County Council policy is that no-one is allowed more than three hours per week support with domestic tasks, which include cleaning, essential laundry and food shopping. That might be OK if you live alone in a bedsit but I have a husband and three children.
Best of all the social worker who reviewed by case stated that I can do domestic tasks for two hours a week so I'm only assessed as needing support for one hour per week. That's one hour to do everything for a family of five. Also my husband works full time, commutes an hour each way and he is expected to do the rest of the housework, and food shopping, and care for the children and care for me. I guess he isn't allowed to have any time to himself to relax, or shower, or sleep.
I asked the council for the policy document that states this maximum three hour limit on domestic tasks. They sent me a policy guidance document but there was no mention of a limit. I get the feeling they are making this up as they go along as an excuse to cut packages, but I am a cynic when it comes to social services.
Now I'm waiting for a phone call from the Adult Services Team Manager. There is no way I will be able to cope if they cut my package, my health will suffer, my husband's physical and mental health will suffer and my family will suffer. They don't seem to care about that though, it's all about meeting the budget. Whatever happened to the care in social care? Answers on a postcard please!