It was a bad night last night. I went to bed but could not get comfortable so I came downstairs for a warm drink and to watch some TV to relax a bit. It often helps me to sleep if I put the TV on. It takes your mind off of the pain and gives you something else to concentrate on. I woke up about 6:30, the TV was still on but the lights were off. It was not until tea time this evening that I found out our eldest had come down, seen me asleep, made sure that I had a blanket, talked to me and I answered, and then he turned off the lights and went back to bed.
Eventually after a bit of TV I managed to get to sleep reading a book about 2ish. It is so hard to get enough sleep at night time and then getting up in the morning is awful. Almost every morning I get up and make sure our daughter is up. I go downstairs and put the kettle on having washed the filter first. Then assuming I have not gone to sleep again I make a cup of tea and take my tablets.
I never manage to stay awake and our daughter gets herself ready for school, she knows to wake me up if she needs me. It makes me feel bad that I end up never there for her in the mornings. She does not mind, she says, but I feel bad that all I do is sleep.
After she had gone to school I went back to bed because I was so tired and slept until 9:30.
It has not been a good day today.
I did not bother to shower or have a bath as I was cold and hurting so much that I could not bring myself to do it, although later in the day I did wash my hair.
Then I went downstairs and wrapped a blanket around me. I had on a roll neck top and a cardigan, trousers, socks, ankle warmers, slippers and still I needed the blanket. I did consider putting my gloves on.
I did a bit of study and played some games on the computer, well one game in particular that I am a bit obsessed with at the moment. Just as I was thinking about what to do for lunch and a friend of my husband’s came over. I was sitting at the computer wrapped in a blanket, I don’t know what he thought but to be honest I do not care, being warm is more important.
He stayed a while and about 2 went away. I had got a bit fed up as I could not study with the talking and felt that if I went up stairs to the bedroom I would have lain on the bed and gone to sleep.
I ended up getting really tetchy and shouted at everyone in the house about different things. This is something that gets to me, the emotional rollercoaster that seems to go with lupus. I was getting frustrated from the moment that I realised that there was nothing in the house for lunch. Then the older two boys decided that they would go and get pizza again. Then there was my legs, they were aching and had swollen up and it was only half way through the day. Tomorrow I am going to see the gp about that and also to get my scan results. I seem to go to the gp every week, kindly as he is he must be fed up with seeing me, I know I am fed up with going there. The surgery is on the first and second floor and like many with APS/lupus I do not like lifts, so I go up the stairs like a 90 year old. The number of people who we say you go first and they do not believe that they are quicker than me on the stairs, until of course they see me. These people are usually at least 30 years older than me! Of course the gp we see is on the second floor so that is another flight of stairs to manage. The rails are not so good and I keep thinking that maybe they don’t realise that the stair rail is no good. It is not big enough to grip and is more like a groove to lean on. Of course the answer is use the lift, but I do not like lifts.
The end result was that I shouted at everyone and then went out in the car with the boys so that I could do some shopping.
I had to take money out of my savings that I had put away for Christmas so that I could go and buy a load of food for the freezer. Our youngest boy should have been getting EMA the since term started but his one was not processed correctly. So he had to get money off of me. I know that I will get the money back as he has been told that the EMA will be backdated as it is not his fault. But until then I have to give him money. As I pointed out to the person on the phone the reason that he gets EMA is that we are on a low income, so to not have the money is a problem.
Anyway by the time I got home I had calmed down. Just felt really guilty about how I had had a go at everyone. So I bought a book for Michael, and a new candle lighter as our one had broken so he can light the smelly candles. I bought the kids some nice things for puddings. Today they chose angel delight. Charles made 3 packets at one go between them, and it did not work as it should. The kids were having so much fun at the table saying what this pink lumpy and yet runny stuff looked like. I was concerned that they would not eat it but they did.
Spent most of the evening sleeping and watching TV. Life is so boring when the highlight of the day is managing to shop for food. You have to choose shops carefully as the lights can make you feel funny. Also I have vacant moments often when shopping, but today I managed without any light problems or vacancies. I was shattered and hurting by the time I finished. It is like I have run a marathon, and yet it was a few shops in a small town. I did not even attempt our large supermarket as I knew that I could not cope. I need some new foundation garments, but the one shop that I know I can get the right style and size always makes me feel funny. It must be the lights in there.
I feel like a balloon that has half deflated, no energy and no oomph tonight.
Nearly time to go to bed, to see if I can sleep or if the joints will get to me and keep me awake. That or the dreams.