Apologies that there was no shiny new post awaiting your perusal this morning, or indeed last Wednesday or Friday… I have had a few very tired days, due to a sleepless night, and a measure of extra illness.

Over the past few days several things have been bothering me, but there is one specific thing I really need to write about. Something seemingly insignificant, and maybe if I was having a better day, it would be, but the day it dropped through the letterbox, it made me mad.

The offending item was a postcard, from my care agency. For my sake, I shall not name them. They offer  a special service, which I shall not name, lest I identify them, but they offer a service which is in addition to The blurb on the card said this:


We know that social services do all they can to fund the care you really need. But did you know that with [name of tailor-made service from Company Name] you can privately top up your care with the extra support you’d like? 

There are so many half-truths here, it is difficult to know where to begin. It also hurts. A lot. It’s like my ideal life being laid in front of me on a platter, and then someone swipes the (proverbial) rug from underneath you and a taunting voice in my head goes, do you know what, if you weren’t so sick/disabled/spazzy and able to hold a job down you would be able to pay for more support. Then, I wouldn’t need the support though, because if I was able to hold down a job, my time would be taken with that, and I might be able enough to do the things I really want to. I have written some of this before… but seeing the darned postcard advertising this service just brought home to me the things I would love to be able to do but cannot. If i could, I would have a much improved, more consistent and ,much more varied life. Granted I would be even more exhausted than I am now, which is an unknown quantity. This kind of tiredness would be bad enough. The thing I can’t abide is the half-truths like I say; the illusion that I have a choice in any of this.

It really hurts. I would have LOVED to go to a close friend’s wedding this weekend. To do that, I would need to go with a carer. There are so many reasons why this has become a necessity; partly because I am largely unable to go out on my own, because of how disorientated I can become, and partly how tired I get. I can be absolutely fine one minute, and the next, absolutely out cold, to the point where it is very difficult to wake me. It’s a matter of safety. Add in the need for personal care, and that away from home, out of my normal environment, my needs change: pain levels can ramp up, my bag is unpredictable at the best of times, heck, my body is unpredictable!!

I have been reminded of this the last few days. Had I proper choice in having extra care, and done what I really wanted to do, I could have visited my ex once a month, or even every couple of months, and it would have made the distance much easier to bear, not to mention making me able to play an equal part in the travelling. I also haven’t seen my best childhood friend in about 3  years as they live in the north of Scotland. Holidays are another option not open to me without care, and astronomical expense. It would have cost me more than £1500 to visit my ex for a few days, with a carer, and pay all their expenses too, and the agency wanted “compensation” on top of that. No can do. Where is the choice in all of this?

The rest of the card just adds insult after insult. It keeps talking about me having ‘All the extra support [I] want to live a more comfortable and enjoyable life’; and ‘as much or as little extra support as [I] want…’ I WISH! It is how care services should the run, in my opinion, but it is out of my reach financially, and the card rubs it in. So, what do I do now? Go back to living my (mostly) enjoyable but very restricted life and forget that the card ever appeared! I’m going to ask to be taken off the mailing list as it is pointless sending me the information. Some of the company’s mostly elderly clients will be able to afford the extra services, good for them.

I am going to be able to go to a friend’s wedding and a family event this month, because my parents are ferrying me about in their car, and chaperoning me to the wedding, which I am very grateful for. Other than that, it’s back to my version of normality for the rest of the month. Hopefully that means getting back on track with blog posts. I shall have to wait and see. I am off to talk to the carer who is sat here doing nowt! Until Wednesday…

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