Living on my own for the first time in my life is a big shock. Yes its true you can eat what you want when you want, watch the programmes you want to watch on TV, but to be honest I couldn't be bothered I was just so tired, and shocked that I had actually left. I left on the 18th and went to work on 20th I was so glad to hear someones voice. Everyone asked how I was doing, everyone got the same answer "Yeah I'm fine" then it would all get too much and I would break down and cry.
Matthew was staying with Bob for a week and I met them in Mach, he wanted us to watch him play football so off we went. Afterwards we went for a drink in a beer garden " Nanny are you still going to be my Nanny" well how I didn't cry their and then I don't know but I told him " yes Matthew I will always be your Nanny" with that he said "even when I am a hundred"! That did make me smile.
It did seem weird that I wasn't with him and Bob all the time like we used to be. They did come to the flat so Matthew knew where I lived.
On the Saturday my friend Cath and I went to Telford, we are good going round together because she has back problems so needs as may "sit downs" as me and she is an honest friend, even if I thought something was lovely, she would tell me the truth and so would I to her. We actually went on holiday together last year to Corfu and had a brilliant time. On the way home from Telford the train broke down, I think we got home about 4 hours later than we should have done. We had had a good day though.
Didn't see hardly any of the Sunday, maybe an hour in the morning, to take tablets, have a drink and a bit of a wash. Then at the most 3 hours in the evening. So then I don't eat properly, when I am awake like that I am not capable of cooking anything, I can just about make a cup of tea or I will have a can of coke and nibble on fruit or crisps, its like I am in a drugged haze state.
That is not my choice, I have no choice but to sleep, and its not a normal sleep either. I call it " a short course in death"The dreams I have seem so real that when I do wake up I don't really know if it was a dream or real, till I wake up properly, I think this is another reason why I am so tired when I wake up. After a day of doing something "normal" its as if I my body punishes it self and me. I can sleep through anything, we have had storms etc and I haven't heard them and now I have no-one to wake me up I sleep for hours on my days off. When I have work my alarm is not far from my head and it is very loud. To be in work for 9am I have to get up at 7am even though work is less than 5 minutes away. When I wake I am in such a state that people would think I'm hungover to say the least, also since I left I haven't been sleeping the night through, I always seem to wake at 3.30am and I need to drink something fizzy and lots of it. I don't move much in bed and the pain of being so stiff has also been waking me, then its really difficult for me to get myself out of bed and takes me ages.
I got myself up on the day of the royal wedding and went to cath's to watch it as my TV had not been connected. That was a bit of a blurred weekend for me when I got back to the flat I opened a bottle of red wine, by the end of the day I had drunk 2 and a half bottles and was totally drunk! I literally crawled to my bed and then just lay their till 3pm on the Saturday.
This is a photo of me that was taken around April or May 2011.
Its the latest one I have got. I will put some older ones on to show you how I have changed!
Me and Katie ready to go out for a night with the girls, was a good night too.
I think people think I am on Methadone or whatever when they meet me for the first time, I am always dripping with sweat from my head all down my face. i look like I have just walked out of the shower. I find this one of the most embarrassing things with this awful illness.
May 2011
Bob had painted the bathroom for me 2 days before I moved. Friends from work came and painted the hallway, landing, spare bedroom and living room, to freshen up the rooms they did a great job and we had some fun, Veron helped me make my first ever vegan meal for Chris who was doing most of the painting. Really enjoyed it too. Its things like painting that I miss doing, I used to love ripping wallpaper off and painting the walls, but I can't do that anymore so have to rely on other people for help.
Sometimes I wake up and wonder where I am! A lot of the time I wake up and wonder what day it is. I can't get in or out of a bath without help and I always hurt myself in the process, this flat has no shower, they are supposed to be putting one in before Christmas. So I have washes in the flat and sometimes go to the leisure centre for a swim and then I can have a shower! I wash my hair over the sink in the kitchen. If its a day off and I'm not going anywhere, then I don't even get dressed I haven't even got the energy.
Housework well, not a lot gets done, I do clean the loo, I couldn't cope with a dirty loo. As for the rest of the flat not much gets done but I don't make that much mess and if anyone moaned (nobody has yet!) about it I would tell them where the cleaning materials are kept and that they would be welcome to get on with it!.
I have a weekly container with compartments in for my tablets, I take 30 tablets a day sometimes more if the pain is too much for me to cope with, Bob wrote them all down , how many and when. I sit at the table and try to do a weeks supply at once, because of brain fog most times I'm lucky if I get 3 days done, I have a diary and a calender with everything written on, but do I always look at them......I forget so easily, I forget conversations that are only a matter of days old.
On May 26th I got a phone call from Bob. he was in Casualty in Aberystwyth hospital, Cath took me, we were in Aber as we had been to see a client. When I got to him I could see he was in terrible pain. He had been suffering with his leg since January. They had taken blood tests and were waiting for the results, they were supposed to scan him but their was a back log. Katie and Matthew were moving from Tenby the next day to Carmarthen and Bob was supposed to be driving their that day to help her move. That was all he was bothered about, well, as well as the pain in his foot and leg. Some of the results came back and they decided to let him go. So off he went to Tenby. He was telephoned the next day by the hospital and asked to come back, he wouldn't because he was in Tenby, they told him that he had got Deep Vein Thrombosis. A blood clot in his leg, that if it travelled could be fatal and that driving was the last thing he should be doing. He was told if it felt any worse he should get to the nearest hospital quickly! Luckily it didn't get any worse and he drove back and on the 31st of May I went back to the hospital with Bob in Aberystwyth and he had a scan. He has to take Warfarin tablets and morphine for the pain. He could hardly walk. I felt very scared and worried, yes I had left him but I still loved him and didn't want anything bad to happen.
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