Sometimes it takes something going wrong, for you to realise that it has always been wrong, yesterday was a perfect example of that. The day started well, my new system to give me more time to myself and also to allow me to still be active online while Teressa and John were here, it worked perfectly. I did push it in how fast I was doing everything and that believe me is hard, it is just one of the things that I seem to have lost the ability to do. We all think that we can move a little faster, work a little quicker, be that bit more animated, so we complete our daily task and have time to spare, but as life closes in, those abilities all vanishes for a many, many reasons. It isn’t just that your body and mind can’t keep up, or that your energy levels won’t let you, it’s all of them and something more, something that I can’t quite find the words for, almost as though time itself changes and means nothing, life just happens as it does and you can’t change it in any way. But yesterday even though all those things were there, for once a new routine and plan worked as far as time, the results though seem to be just that disappointing, probably far more to do with my brain and I will need to apply a little more ground work changes to get it just right.

When Teressa and John arrived just as always I found myself saying hello to this amazingly attractive and incredibly tall woman, when you don’t see someone for long stretches and trust me we went sometimes years not seeing each other. Having a child taken from you when still a child, taken to the other side of the world and then chooses to be a globe trotter, well not seeing each other happens, as hard as it is, it is the way life is. It is always the same, I hold her for a second and have to let go and walk away, partly because I am stunned by what I see, as in my head she is still a mix of the baby I once loved more than life and the young women who arrived here to see her mother get married, but mainly because I need time to pull everything together in my mind and deal with the joy of being with her once more, I have spent too many times on meeting her just crying without being able to explain it to anyone. The afternoon seemed to fly by although we talked about nothing, we seemed to talk about everything, as always there was a mix of today and of the past, the past always appears as it is what we have in common and both of us, her due to the fact she was so young and me because well the word memory, is a joke, not a reality. I actually wish sometimes that we didn’t keep going over it all, but it is the only time we have shared that both of us have lost. I wrote a few weeks ago about the house were we lived in Rhu, I wrote about it as I had a missing room, a space where I knew there was the 4th bedroom, but I had no recollection of what it was used for or even what was in it, strangely neither can Teressa. She had been my big hope, but she was too young to have held that memory either, in fact until I walked her through the house she had only a hazy recollection of its layout. It is bizarre how neither of us remember and that we both came up with same possibility, that it had been used as her father’s study, something we both knew that it wasn’t as I would have cleaned it daily if it had been, so it remains a mystery. We had to eat early as Adam wasn’t able to eat after 6pm as he was having a blood test done this morning, nothing serious just a check up, so we ate and we talked, but they had to leave at about 8 to get the train back to her brother’s house in Dunbarton. Clearly, my routine was shot, everything from the minute they arrived had nothing to do with the organised and regulated life I normally lead and that is where things went wrong.

I have for several years played about with my drugs, but I never found that the so called 12-hour slow release drugs actually lasted 12 hours. I know I have said that when I get up I was used until recently having this window of about a couple of hours were build up of the sleep and rest I have overnight is enough for me to get through that time without taking my drugs until around 8:45. It allowed me to get through the day with a good level of painkiller holding me at a level I could deal with, it also meant that I could take my evening drugs early so I didn’t have to go through that horrid drain down and lift by taking them at the right time. When my memory was good I took them at 8pm, but as things started to drift out of control, I grouped it into a collection of things I did at 7pm, my trigger being the start of evening TV. It actually meant that I was taking them too early really, but if I didn’t I would find myself going to bed just as the down slope was getting strong and confused to hell by what was going on. Well, it happened last night. I knew I was in increasing pain from just before 8, but with everything that happened yesterday, I convinced myself that I had just pushed myself too hard through the whole day. It is hard to keep up an act for that length of time, holding onto covering up every spasm, my stuttering, pulling hard on my memory and not showing any sign beyond what I couldn’t cover of pain, disability or anything else. I know that some will say that covering up in front of my daughter shouldn’t be necessary, but when you live so far apart, the first instinct of a mother is to not show that reality, I don’t want her leaving here with a vision in her head that she has to live with. So there I was in pain, confused and with no answer other than desperation to lie down and sleep, but there were things to do before that could happen and I found myself snipping at Adam over things that didn’t matter but I was so tense and so not myself, I couldn’t help it. Once in bed, I lay there still lost as to what was happening and eventually giving in and I sat up to take my booster, then I remembered, I hadn’t taken my main dose at all. I was just 12 and half hours past their run out time and with a body that was going nuts, solution take my meds. I sat with Adam for about 20 minutes while they kicked in and we talked it through, he knew that this has happened before and with my loss of ability to do anything which has to be done, even if I do miss it by a few minutes rather than just not doing it at all, he set an alarm on his phone so the 7pm drug slot couldn’t be missed again.

I slept well and right through to the alarm, no waking at all even to see the time and I woke without the pain I have been having recently even though I should have been well rested. I woke today feeling actually quite good and I sat here happy to be doing things rather than fighting with a body that wouldn’t work for me. Adam has now changed the alarm time to 8pm, we are going to work on this one together but it is clear to me that that one hour change to the time I take my drugs has the potential to make a huge difference, if I can start my day active rather than struggling, then hopefully the rest of my day and night will also go better. I know it is right now just a test, but on morning one, I call it a success.

Please read my blog from 2 years ago today – 04/08/12 – Independent Living 

Yesterday I was invited to help out Alex Flynn doing some PR work, something I have never done before and have no knowledge of doing, especially as the work would have meant that I would have been dealing with the American media, I’m not a great media person if you know what I mean. I am the type of person, that if Usain Bolt sat down beside me I wouldn’t recognise him, which has…..