What do I do with my days?

I was asked the other day “What do you find to do with your days?”

This question got me thinking as I was rather taken a back, am I being asked because I am disabled and unable to do much for myself? Am I being written off? It did make me chuckle because if the question was posed to my PA she would say that there is not enough hours in the day to get everything done and she is quite exhausted at home time!

I thought it might be interesting from my point of view if I listed everything I have got up to since my last blog (when I say everything I don’t mean eating, sleeping and my toilet habits), I am finding this sort of thing quite cathartic. Beating myself up regularly is quite common, I often say to hubby “I don’t do a lot because I can’t” he always says to me “you’ve got to be joking, you never seem to stop”. So when I have my down days I can read this blog and remind myself how much I pack into my days.

Back in March of this year I booked tickets to go to Victorious (a festival held in Portsmouth). I was eligible for a free carers ticket and could apply for a free platform pass. 

I have been very excited as at the tender age of 54 it would have been the first festival I have ever been to and Rag N Boneman was headlining on the Saturday night. To my cost I had a dose of brain fog at the beginning of August and booked an event at the Hawk Conservancy Trust for hubby, SMD and I to go to in the evening and guess what it was the same day as Victorious.

Saturday:

I had it all planned SMD would arrive by train hopefully by 10.30am, we would bring her back to the flat and hubby and I would go to Victorious and spend a few hours there, see Craig David and accept the fact I would miss out on Rag N Boneman. Then we would drive back to the flat pick SMD up and go to Andover to the HCT.

What actually happened:

Life working for the NHS meant SMD didn’t get away from work on time, by the time we were able to pick her up and have a spot of lunch, we left for Victorious at 12.30pm. What is normally a 20 minute journey took us 1.5 hours. When we arrived at the accessible car park the queue to then walk to the entrance of the festival was over an hour. I took one look and said to hubby “as soon as we get in we will have half an hour and have to come home”. Sad but true we chose to turn the van around and come back home. Once back at the flat we then had to attend to wees and poos, again something else that takes a little longer when you have a stoma bag and a catheter. Now back in the van we set off to Andover, just a 75 minute journey this time. We arrived and had our evening meal in the restaurant and were sat in the arena ready for our African Savannah Experience. 




only to find that 50 minutes later it was all over! Back in the van SMD and I fell fast asleep unfortunately hubby didn’t have that luxury.

Lessons to be learnt from the day make sure that you write on a calendar when an event is going on, so you don’t double book, it’s a costly exercise if you don’t!

 

Sunday:

It was lovely to have SMD home but there was no rest for the wicked (me) and off the DeanTeam went in the morning to see my elder sister in the care home on Hayling Island.
It was a short visit because we wanted to drive to Barton-le-Clay to visit my mums grave stone as it would have been her birthday the next day. A good tidy up of the plot by SMD leaving some flowers from the family. 
We were on our way again. This time we were heading for St Mary’s Hospital, Paddington, London ready for SMD to start her night shift at 7.30pm. Now on our way home it was time for me to have yet another snooze and hubby to stay awake and drive.

 

Monday:

A reasonably relaxing day, my love of the Paralympics saw me sat in front of the television until 2pm. I learnt some interesting facts 16.2% of the UK population are disabled - that’s 11 million. There are 227 UK athletes in the Paralympics which equates to 0.002% of the disabled population. The vast majority of disabled people will not take up sport of any kind but what we do want is to be on a level playing field with our able bodied counterparts. My eldest sister has decided to use a private physiotherapist and now she wants her little sister to benefit as well. I now courtesy of GAL have physio every Monday afternoon at home. GAL has even purchased a set of scales that can be attached to my hoist so both of us can be weighed regularly in our own homes.

Tuesday, Wednesday, Thursday and Friday: 

I have a PA Tuesday to Friday which is provided by Hampshire Social Services through a care agency. Predominately because hubby works and I cannot be left alone and I need assistance not only with eating and drinking but with daily tasks such as emails, social media, hospital appointments and of course this blog. This week I have been tied up with all of the above especially sorting out my MRI appointment for next week. Again I have to go through organising with neurology patient transport so my hoist at home can be used, this includes various Covid protocols.

 

I spent over 3 hours trying to get through to ATG ticket line to book accessible tickets so we could go and see Hairspray. Although I should be able now to do it online there was an error with their website. Unfortunately this proved to be another example where people with a disability are at a disadvantage. The good news is the phone was answered in the end by a lovely chap called Connor and I got to book the tickets I wanted, I must admit I squealed with delight.

 

All in all it is now Friday afternoon and hopefully by 4pm I will have finished my blog. Hubby has completed all his work for the week so both of us are pretty content. The only trouble is come the weekend Hubby puts on his other hat and gets his pinny and feather duster out together with the ironing board. Now I know my DLA should cover the cost of a cleaner but when neither of us pay tax you can understand why the money runs out. In Buckinghamshire my PA’s were allowed to do the cleaning and ironing but here in Hampshire my care agency have been told by Social Services they are not to do such things.

Our life is a good one on Hayling Island and nothing beats being close to my family and fortunately we are able to speak to my hubby’s family whenever we want and see them every couple of months.

I do feel that the Government need to put more money into adult care and social services and we all live as equals.