May 29th, thoughts and ramblings


It’s 11:26am and time to update my diary. I woke feeling bad this morning. I was tired and confused and just wanted to go back to bed but that isn’t a good option. It’s better to get up and face the day and see what happens I think. Sometimes things turn out better. I had my breakfast and played the games I play everyday to keep my mind active. I didn’t feel any better at this point, in fact I felt worse if anything. It’s times like this that I wonder if this is the beginning of the end and the slow, steady slope down to full blown dementia. I’ve read about dementia and it can be 5 or 10 years before a person ends up as we know someone with dementia, sat in a chair looking vacant and dribbling, not knowing what is going on but the journey to get to that point can be long and arduous for the person and their family and friends. The thing for me if this is dementia is to keep going and not give in until that is the only option. I still don’t believe this is a migraine because I’ve had far worse headaches than this but I haven’t felt the confusion and vagueness that goes with how I feel now. The headache is quite gentle but noticeable and is there all the time throbbing away in the background like the slow ebb and flow of the sea or a stream on a still summers day as I’ve said before. Slowly, ever so slowly getting further and further up the shore until it reaches land and flows over it consuming everything in it’s path. The journey of water can be a slow and mesmerising one where the passage of time slows down too as you become engrossed and transfixed by it’s slow movement up the shore. I feel the same as the water. It’s very slow and at times I am lost in my own thoughts for a brief moment before I come round and realise I’m still here, I’m still alive and carry on with my life.

That’s I felt this morning and how I feel a lot of the time. The beta blockers have slowed my heart rate, I can tell from looking at my watch, but there hasn’t been any change mentally although it is early days and things may change yet. That’s the purpose of this diary to write down what I feel is happening and note any changes in my mental capacity and ability.

So after my breakfast I did a few jobs and some exercises with my kettlebells and medicine ball which I haven’t done for a while. This really helped me. Although the headache is still there I feel more lucid and alert than I did this morning so I’m going to make the most of this day and go to see my friend of over thirty years Rebecca in her garden, go for walk and just enjoy being alive and feeling alive for a change. I had a message from my friend Karen who works for the NHS about a new support line for people such as me who are on the autistic spectrum but because we are viewed as being at the top we are denied access to services which would help us to cope better in these and other times because we are viewed as being more capable and therefore able to cope on our own which is the case for the majority of people. Just because you appear more capable does not mean you are. Claire continues to be the best friend anyone could wish for always asking about my welfare and wellbeing and just being there for me. It’s a great comfort when you know there’s someone who cares about you and who understands you too. It doesn’t mean you have to be on at them 24 hours a day but if you do feel like your slipping you can think about them and know that they care and that helps a lot. One day I will repay Claire for all the help and support she has given me in these troubled and strange times. I’ve down in the pits of hell at times but Claire has pulled me out and although I still feel down from time to time it’s nothing as bad now. I’ve got used to the times we are living in and far better and able to cope. Today is a good day and I’m going to make the most of it.

It’s now 12:49pm and I’ve just had something to eat. I’m off for a walk round the village before I pop up to Rebecca’s. The tiredness has returned with an increase in intensity from the headaches. A gentle wave lapping over my head and soaking me in tiredness. This is when the confusion and vagueness return. I notice it, I don’t know if anyone else will. It stops me reading books as my concentration goes and I fall asleep after reading 10 or so pages. All I can do is sit and watch TV or go for a run or walk. Everything I want to say is locked in my mind and I don’t have the key to open it anymore. People ask me questions and it’s like I’m running round and round a building looking for the door so I can go in and get the information but there’s no door anymore just blank walls, no doors, no windows. It must make me seem so boring but there is nothing I can do. Every now and again I find the key and can unlock the treasures in my mind but it’s getting more and more infrequent. I’m still going to return to uni to see if a change in environment allows me to unlock my mind. I must not give in, I must keep fighting. It may be temporary, it may be permanent. Unless I try I will never know so try I must and try I will.

It’s 9:12pm and time for a final update for today. I’ve been up to Rebecca’s for the afternoon sipping gin in the sun while topping up my South of France tan and talking about my current issues with headaches and Rebecca’s past issues with them. We both agreed that my headaches aren’t down to migraines bit couldn’t decide what was the cause. While neither of us mentioned dementia it felt to me at times that it was the obvious choice but with Rebecca’s dad having been diagnosed with dementia last year it didn’t seem appropriate to mention it so we came to the conclusion that the best way forward was to see how the beta blockers work and if they get rid of the headaches, confusion and anxiety or if not what does actually happen. That seems a sensible option. We talked about the old days and reminisced about good times and people taken too soon. It was a good afternoon and great to talk with an old friend about everything. It made me feel human again.

I’ve been to Tesco’s and got a curry and had that with some water. I’m tired but good. My headaches have been on and off as usual and my heartrate has fluctuated between a low of 39 and a high of 134. I’ve had a great day though and I’m looking forward to more days like this with more of the amazing friends I have. I’m pleased about my diary today, far more so than I was with yesterday’s entry which while being honest was a bit rambling and out there in my opinion. I’ve drunk the right amount and eaten too much as usual but I’m looking forward to a good nights sleep listening to a book or a meditation. The cats are fed and happy, life is good and I’m happy too 😊

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