…23rd March 2013
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.
Driving around the countryside I was thinking about the recent floods that turned the fields into lakes forcing livestock into small corners of slightly higher ground. Lakes that have ruined the winter crops for the farmers.
We crossed the Swarkestone Causeway which was built in the 13th century to cross the river and its surrounding marshes. It is the longest stone bridge in England and is listed Grade I. The marshes have been turned into fields over the years, but retain a large pond area at the end of each field near the bridge. The ponds where the ducks swim and live amongst the reeds are usually full.
This got me thinking about managing land and farming throughout history. Have you noticed that the ditches have disappeared? Hedgerows have been ripped out to increase the areas of crops and grazing. I remember as a child ditches being waterways for water, we would play in ditches, jump across ditches, and accepted that there were ditches everywhere. I have grown up with ditches being drainage channels, so how come farmers these days fail to maintain them. It seems to me that farming has become ‘industrialized’, taken from the farmers own hands and given back to them with the ‘new methods’. I know that I do not have the experience to judge how farming has moved away from the land towards textbook working, so can only state what I see and how I think about it. Some hedges are not maintained and grow up into sparse bushes and trees that no longer form a firm boundary. Ditches are no longer cleared each year allowing the water to drain, fill and flow. I don’t know how much these things impact on waterlogged fields but maybe they help towards drainage. I know the impact on wildlife has been high, with the loss of habitat. Ponds, and ditches, have been part of our landscape for a few hundred years before land was taken from the commoners and given over to private ownership filling in the ditches to increase their productive area. Ditches around alongside the hedges remained and were maintained.
How has modern farming changed the usability of the land in light of weather changes outside of our control?
A few ditches have been dredged but not enough, rivers have not been dredged and left to silt up so that water draining off the land raises the level of the rivers which burst their banks.
When did we stop managing the land that has been managed for hundreds of years. Do we feel we know better than the simple farming people of history?
As I say, I these are only my observations and thoughts without expertise.
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.
Monthers day came without the card from my daughter, posted late I would be waiting till Tuesday to receive it! Then she announced that she would be coming to visit on Tuesday with the boyfriend I had not yet met. My daughter’s train arrived at 1:20 and we hugged a ‘miss you so much’ hug. The boyfriend is a nice looking lad, shy with good manners, I like him and it is clear that C is besotted with him. However quiet he is, his words are carefully and wisely chosen. He is her grounding. I cooked curry whilst C and I caught up with news, and then we reminisced, I realised at some point that this was a private moment where Mr Hs and J could not join in. My daughter and I have a close bond that often single parents and their children have, that cannot be breached by anyone else during certain moments. It was one of those moments; she was taking us down memory lane and only we were walking arm in arm. I miss her, I miss talking to her, I miss the in-depth conversations we have about various topics and the news. I miss our closeness. I miss watching her life unfold in the delightful way she shares it. I miss her humour.
I have fibro body this week, my right shoulder is painful when I bend my head forward, I have pain in my wrists, my lower back and the end joints of my middle fingers. All of my fingers are beginning to hurt when I bend my fingers into my palms, and the bend gets less as time goes on. On a scale of 1 to 10 the pain is 8.5. I have been very tired and have been asleep by 10pm then waking only once at 3.30am I slept heavily till morning, but when I wake up I am still tired, the night has not refreshed me. On Wednesday I found Hydrotherapy too painful and left the pool early. I think that I am having an extreme bout of Fibro at the moment but it will subside.
Last night Mr Hs said ‘We will get up early and go out to Birmingham Today we are going out to the Museum and to the camera shop’; Mr Hs would like to treat himself to a new camera when the boat sells. It will make the difficulties of saying goodbye to an era that was his life-saver a positive thing to do. However, this morning when I said we were going out, he asked me where we were going. I find it hard to tell when someone is joking or not, and I especially do not ‘get’ Mr Hs’ dry joking sense of humour at times. I wish people wouldn’t joke that way because it confuses me. I think this has been a lifelong problem for me because it is a Dyspraxic train trait only now it feels more of a problem. I encouraged him to think about it – use it or lose it; and eventually he said Birmingham, then that we needed coal. If he is not faking not remembering then we have a problem between us because it would appear that his memory is worse than mine!
I am finding that as I write I cannot remember what I have written before, I don’t remember the details, the words, or the subject. This means quite possibly and probably I may be repeating what I have already said because it would be ridiculous to re-read everything I have written each time I write some more.
Playing around with my photographs reminds me I need to lose some weight!
The past few days I have not taken my Fluoxetine because they are upsetting my stomach, and my head continues to have pain on the right side. On a scale of 1 to 10 the pain is about 8 at times. I was trying not to take painkillers on a regular basis because previously it had become too regular and can induce headaches, but now I simply cannot bear daily headaches.
The day is very grey, heavy with the promise of more snow. The bird table still hangs in the window, empty and incongruous whilst we discuss possible places. Can we somehow hang it outside the window inbetween the boats, would the birds find it so far away from the bank and trees? We had chores to do today; the tap was not frozen so we would fill with water, at the same time put the washing machine on. Mr Hs went to empty the toilette cassette and I dumped the rubbish bags in the skip. I also used the shovel and cleared the snow from the pontoon from our boat to the car park. My back and wrists were hurting but I continued because I felt I needed the exercise. I took a few photos, but there was nothing that came out particularly stunning.
It did not stop snowing on Sunday and it would have been silly to have gone out. I feel sick; I have felt dizzy for a couple of days and had the mother of all headaches. My stomach is hurting and I think that the replacement fluoxetine tablets are making me ill. When I collected my last prescription from the pharmacy the factory TIVA had not got any so they gave me another brand that had no lactose in. I have had a look online for information for Lactase – for people intolerant to lactose, and think I might try some so that I can take the medication amitriptyline which is for my Fibro pains and sleep.
Yesterday we went to Lichfield; the cathedral looked beautiful with its blackened stone with the contrast of snow clinging in the crevices of the carvings. The roads were clearer than I thought they would be, but I think that is the microcosmic world of the marina giving me that impression. We bought a plastic and wire mesh hanging bird table some bird food because the snow still lays thickly on the ground and on the trees and has been for some days. Mr Hs put it together and we hung it up on the brass curtain rail and set to thinking where the heck we could put it outside!