Earlier in the week we walked round Calke Abbey House. We have been going there for about a year but had yet to visit the House itself. ‘Don’t go too early in the season’ we were advised ‘it is freezing’. So once we felt it had warmed enough we got our tickets and entered the house. The house is wonderful, full of rooms randomly littered with ‘junk’. Furniture, items of curiosity, toys, stuffed birds, fossils, rocks and books scattered everywhere. Very few of the rooms are set out into a representation of a liveable state. There is a kind of reality to seeing the rooms cluttered and packed with curious as they were left. The house never got electricity until the 1960’s and remains behind the times.
We had been round the house and having gone through the cellars came out into the courtyard by the stables. My phone rang and it was Nicky from the Memory Clinic returning my call. ‘Do you have time to speak she asked’, I looked around there was a woman over in the far corner talking with Mr Hs, and I answered ‘yes’. She then explained that Professor Lindsay had retired and the new consultant had been passed my case. The new consultant again is involved with academic teaching and research. However, the reason that they will not treat people out of area is because of the associated services that are offered, such as additional support for applying for benefits, support etc. I can understand what she is saying but I feel totally abandoned. I don’t want to have to go through starting again with another set of Doctors, more tests saying the same thing. I feel upset as she is talking, I realise she is the messenger of ‘sorry you are not in our area-not our problem’. I am sitting on a ledge leaning against the stone of the building in the courtyard, a tear escapes my eye. I can’t believe that I am getting upset that she is telling me the door to the Younger Persons Memory Clinic is closed to me now. I think I am scared of the change. There is no way I want to go to Queens Hospital at Burton, so I will have to go to Derby Royal Infirmary. They have no Younger Persons Memory Clinic which means I will be treated in a predominantly geriatric unit with Dementia patients. I am not geriatric, I do not have dementia, and I am scared of being with people who do. I don’t want to see a possibly older version of me. There is no involvement with research there, and I am guessing no possible options for new treatments.
There seems little choice but to accept that I have to transfer my treatment to Derby RI.
I have a call from the nurse at the memory clinic, but she starts with the fact that I live out of the area and they will refer me to somewhere nearer. This is a bit of a shock as both SP and Prof L were ok with the fact of where I am, especially as they messed up so badly by forgetting me for two years before arranging for the scans and assessments needed. I feel both upset and angry, not only have I run out of medication, she has not yet found out whether they can supply lactose free. She gave me a response that the pharmacy had to contact the manufacturers to find out the ingredients. I told her that there is a good website that lists all the UK manufacturers of generic medication and that Rivastigmene hard capsule, is the only one that does not have lactose as a filler.
She was also supposed to get me the paperwork for donating my brain for research. This may not be important to her but it is very important to me. I have now become ‘throw away’, a name on a record file that is ‘out of area’ and therefore not budgeted for, passing the cost to a different health authority. I fear moving hospitals, another set of doctors, and nurses and buildings, and departments.
I have been told not to continue with the Rivastigmene patches, (cholinesterase inhibitor). I only have one patch left anyway. Now what, will my memory decline worse than before? All of the instructions and information states not to stop medication, they indicate that the fog may come back with vengeance.
The last patch – today I took off yesterday’s patch, put it back in the packet, and handed the box with it and the unused one to Mr Hs to burn. The patches must be burned or handed to a pharmacy to dispose of. I will not miss the itching of the patches which have given me a bad reaction to them. At Hydrotherapy this week, the therapist asked me if I had been paintballing due to being covered in angry red marks the size of a two pence piece. Hopefully these will now stop itching and will fade in time.
I woke up having slept heavily (apart from the usual 4am check the clock time) but did not feel refreshed. I have pain in the back of my neck and still feel exhausted. My Fibromyalgia is still bothering me.
Thursday I have an appointment at the hospital for a check up on my eyes. I am tired of all these appointments, I don’t want to go and sit and wait my turn, talk to doctors, then leave with most of my day gone. Good news though I am being referred to the Glaucoma nurse for check-ups rather than the consultant because my eye pressures remain static with no damage still. This means it is only once a year and one thing I do not have to worry about, yay!
Quick shop locally, then home …please, as soon as I sit down I am out and slept until 5:30pm.
I wake on Friday with the back of my neck and the side of my head painful, I lack energy and am hoping we can stay in as my batteries are empty and I need to try and recharge them.
I think about Tuesday and chatting with my Daughter but cannot remember what we talked about, I wish I did because I would like to write it down. I remember how it felt being with her though 🙂
We went to Croxall Lakes for a spot of bird watching and photography where I managed to get rather blurred photos of a white Egret, Shelducks, but some interesting photos of a misty distant gravel pit workings. I also got my first photo of the year of wild crocus albeit a little blurred. I really need to learn how to use my camera which is more difficult for me these days as I can’t seem to retain new information.
I had an appointment with Occupational Health arranged by work as a stage towards early retirement, which was indeed most bizarre. The Doctor reminded me of a meerkat but slower. His speech was void of any superfluous words apart from the continuous “thank you, thank you, thank you” indicating that he wanted me to stop speaking. These were muttered under his breath barely audible but unmistakable. He was only interested in answering the questions that was in the letter from my work. The only difference deviation was the form he thrust in front of me to fill in. I looked at it and said ‘this is for extreme depression and I am not depressed so there is no point in filling it in’, he seemed a little thrown by this and proceeded to ask me questions reserved for depressives regarding self-harming and suicidal tendencies. Now, the reason for being there was to start the process for early retirement but for this Dr, he was only there to answer the questions in the letter from work and nothing else. He typed the answers with me sitting beside him and I could feel his discomfort with my proximity, and as we all left we shared the lift where he silently kept his gaze straight ahead barely acknowledging our presence. I cannot imagine this Doctor ever being able to work with patients with his total lack of empathetic connection with people. In a copy of the letter which he emailed to me, he has asked my work to give me my options for early retirement! I fear this will be a long process due to their minimalistic human resources.