The last bank holiday of summer has been and gone, (celebrated in England, Wales and Northern Ireland), for many it signals the end of Summer and the start of Autumn. I can’t believe it is September already, the weather is certainly letting us know it is by being markedly cooler. In some ways this year has whizzed by and in others it has crawled. It has been a strange year here at the Myasthenia Kid house, full of sadness and wishing that things could be different. It has been 8 months of constant change and things don’t look very settled for the future either. Some days it feels like you are in the eye of the storm and others that you are on the outside edge of it looking in. All I can do is be there for those that need me and hope that it is enough.

The one bit of good news is that my headaches / migraines have eased up ever so slightly over the last week ( runs around furiously touching wood). Dare I say it I have had a couple of headache free days. Which is a miracle after the last 4-6 weeks. I did end up with a bad head last Sunday evening, mainly due to the fact I was out in the sun all day with no hat on ( my own fault I forgot to bring it with me) and I was probably a bit dehydrated as I just didn’t drink enough during 5 hours that we were out. It meant I ended up going to bed very early and the following day I had issues with my blood pressure being very low. As soon as I had drunk enough I started to feel much better.

I ended up increasing the amitriptyline I take for nerve pain last week and that seems to have helped knock the headaches back a bit. I can still wake up with a sore neck and head but with a hot water bottle applied for an hour or so it does ease up considerably. I always try not to take medication unless it is absolutely necessary, which probably sounds ridiculous with the amount of medications I have on repeat prescription. I am always concerned that the Sumatriptan will stop working so I always try to head off a migraine before it is needed. Sunday night I ended up taking it along with 3 soluble aspirin and paracetamol as per the protocol I am supposed to follow. When I have a particularly vicious migraine this always helps massively. I have now started using the 3 soluble aspirin and paracetamol when I have a bad head that is not quite a migraine, that’s usually enough to clear it. I am hoping now that I have got on top of the headaches / migraines now I can slowly put an end to this debilitating flare up that came out of nowhere.

As I said earlier we all went out together as a family on Sunday, me, Mr Myasthenia Kid and Dembe. I do love it when we can escape our four walls every now and again. People don’t realise how small your world can become when you are pretty much housebound. A change in scenery always does my soul good, we travelled down to see Mr Myasthenia Kid’s mum and catch up with some family who were also dropping by. I saw one of my nephews who I hadn’t seen in such a long time over ten years. He is so tall now and what a good looking chap he has turned out to be. He was busy organising the cutting of Nanny’s lawn with the petrol Lawn mower by another of my nephews. Jay and his brother and my niece were cutting the front hedge. Whilst me and my sister in law tackled some brambles with secateurs and supervised the dogs. We got torn to shreds as we didn’t have any gloves. I didn’t even realise I was bleeding until I noticed the handle of my secateurs were wet. I ended up covered in plasters. It amazed me how much everything had grown in the few months since the last time I visited at the end of May.

It is a really lovely garden and Dembe loves running around in it. Quite often we will catch him doing Labrador zoomies by himself out there. The garden is a little sun trap and gets the sun all day long, so I am gutted I forgot my bloody hat! I have never really done any gardening before, I have popped a few plants in a pot and weeded from time to time but I have never done any real cutting stuff back or pruning out the dead wood from shrubs. I actually found it rather therapeutic and it is handy that quite a bit of it can be done sat down. I did pay for it on Monday and Tuesday but like most people who are chronically sick you don’t mind having a few rough days if you have actually done something to warrant it. It is when your health takes a nose dive and there is nothing you have done to trigger it that you get angry / frustrated.

Thanks to the bank holiday I will be completely thrown out for the rest of the week. I wont know if I am coming or going or what day of the week it is. I see Mr Myasthenia Kid has started getting the bins ready for Thursdays collection ( I am writing this on Wednesday) I will have to break it to him gently that due to the bank holiday Monday the bins wont be collected until Friday. Plus with Mr Myasthenia Kid not working a late today like he normally would that will really make my head spin and I will not have a clue what his shift pattern is until I am in front of a calendar.

The next bank holidays in the UK won’t be until Christmas (I do believe we need more between September and March) as Mr Myasthenia Kid has a generous annual leave provision he has another two weeks of holiday booked between now and the second week of November. His first week is at the end of September around our 21st Wedding anniversary, I am struggling to comprehend that we are 4 years away from our Silver Wedding Anniversary ( 25 years ). He has another week booked off for our birthday at the start of November. So it isn’t too long at all until I will have some company for a week during the day. With Covid and lock downs it has been more isolating than usual, which is why I enjoy visiting Nanny Morris and catching up with Jay’s family so much.