Maybe tomorrow

A letter arrived the other day, that as always Adam opened for me, it’s my turn to apply for PIP (Personal Independence Payment). I have been in receipt or DLA (Disabled Living Allowance) now for years, without it, I would have found life impossible, but it’s all change in the system and from everything I have heard, it’s not all good. I knew this day would come, they started rolling it out about 3 years ago now, I, though, have been just sitting here quietly just dreading the day that the letter would land. I am so glad that I chose ages ago to let Adam open and read all my mail, as I seem to get myself so confused and frequently distressed by even the simplest piece of news. Adam told me when it arrived and over the next couple of days, laid out the basics of what it contained, but when I got up this morning to find it sitting on my desk, with a note from Adam, explaining the other information I would need, I still got myself into a spin.

I find it so hard to accept that I was once a person who ran so many aspects of an international business, and now, a simple letter puts me into a panic. How has my brain diminished so far? I know from my writing and what I do on Twitter, that I can still appear as an almost normal intelligent woman, but I know, I’m not. Ask me to do anything, even the smallest thing that is outside of my normal everyday life, and I am beyond lost. The instance I am even faced by the idea, that I have to do something unusual, the panic begins. I have had so many experiences over the last years, that have taught me that my brain now has only one role, that of the trickster. It will misread, mishear and confuse me at any opportunity that it can find. From the simplest of things like getting the times wrong, the ones that are right there in front of me on the screen, for the evening’s TV viewing, to not being able to see that something is advice, not a fact. I quite simply, can’t trust myself about anything, and always check with Adam, that I have managed to get it right, before, I take any action. It’s easier that way, as if I don’t, I just land up wound up and in tears, over my stupidity. I wouldn’t trust me to do anything, that I don’t have the opportunity to check it all not just once but ten times, and even then, it doesn’t surprise me, that I get it wrong. Worse still, I all to often, don’t see my error until it’s far too late to fix it.

I can admit it now, but the last four years that I was working, I wasn’t. I knew things were falling apart, so I set to, and I automated almost everything that I had to do. I worked from home, so I spent the first three months writing computer program after program, that did every aspect of my daily work. By the end of my first year, I had reduced my actual physical daily work, to half an hour. Yes, I had ad-hoc work to do, but I had been doing the job for 10 years by that point, there was little that I hadn’t done before, so I at least had the basics required sitting at my finger tips, it was just a case of updating it. I didn’t feel guilty at all, that company had worked me into the ground for years. It was purely due to my teaching myself to programme, that meant I could even produce what they wanted before I was housebound. They wouldn’t spend the money on software, so I had to build it. I was also on 24/7 call out, to fix, patch and keep running, a phone system that was officially obsolete and I kept it running for 5 years, 2 years past the point of dead, without a penny more on my wages, it wasn’t unusual for me to spend my entire evening, or the bulk of the weekend, working on, no extra money and often, not even a thank you. They had used me for years, so no, I didn’t feel guilty doing what they asked, just not in the way they expected it to be done.

When I was made redundant, I knew inside that no one was going to employ me. I knew because, I, wouldn’t have employed me, but I tried. 18 months on, I accepted the truth. My brain, was no more up to it, than my body was able to getting me out of this house. Four years on beyond that, and I am the proud owner of a useless lump of flesh, that isn’t worth the space it takes filling up my skull.

At first, it was just the different, the unknown, the things that I wasn’t comfortable with, that upset me. Now, even the predictable throws me into the depths of despair. PIP is totally unknown. The person I will be speaking to is totally unknown. The questions they will ask me, well I might have a clue, but I know already, that I will at some point, land up in a stuttering mess. Talking to people on the phone, is daunting. What if I get someone who’s accent I can’t understand? Will they have the patience to let me think and to talk? Will they be upset, if I keep asking them to say things over and over, because, I don’t understand? If I get the questions muddled up, can I fix it later? I hate the phone even more than I hate meeting strangers face to face. What are they thinking? Are they laughing at me? Shaking their head and rolling their eye’s? Are they taking the mickey out of me? Why do I have to do these things? Who sits and thinks up the best way of upsetting those who don’t have the mental capability to deal with such a situation? Why can’t they just send me a form? Forms are good, you have time with a form, you can practice what you want to say, over and over, choose the best and write that one down. Forms are good, I like forms.

I can’t do this today. Not today, maybe tomorrow, by tomorrow I will have had time to think. I will have had time to talk to Adam, to go over it with him. I wish I had understood better what he was saying when he told me this letter was here. He makes light of everything, I guess he just hopes that I will be fine, this time, I won’t need him, this time, I’ll just do it. Why would he think that? No, I can’t do this today. I am too agitated by life to step into something new. Maybe tomorrow, maybe then I will up to picking up that phone and typing in those digits, maybe tomorrow, I will be able to actually talk.


Please read my blog from 2 years ago today – Staying happy

Sorry, sorry for going over so many things in the last few days that have been so serious and somewhat a downer, it’s a fact thought that chronic illness has so many things attached to it that make it easy……





14 thoughts on “Maybe tomorrow

  1. I a waiting fro my letter to come. Dreading it. I hve
    have a C.P.N. and a psychiatrist
    and long history of mental health issues- I have buried it far away in the depths of my brain because if I think about it -my mental health dips. The only thing to change is the name and there is a point system which will tel you whether you a high or lower – no more middle. I’m not very helpful. However this is your source of income. Why should you have to justify your illness? Is there somone professional you can talk to and who can help you fill it out

    Liked by 2 people

  2. I don’t see why the system can’t just accept a letter from the doctors involved. And it would save millions. I’ve an assessment this Monday which I’m very anxious about. I hope things go well for you…when I had to phone and the person got impatient over my stumbling – which is not professional of them – I explained it was because I had a severe migraine. It’s not your fault you are ill. And they are supposed to be working for us. Hugs 🐻 xx

    Liked by 3 people

  3. I don’t know if that helps – probably not, but just in case I’ll post it anyway.

    My husband whose brain tends to malfuncion due to hepatic encephalopathy, needs routine to cope. With everything routine, he is coping very well, often much better than I. But the smallest deviation from just throws his brain into a spin.

    I have the impression that the poor brain has to try and deal with so many problems – enervating the correct nerves to have a correct response to anything from the digestive tract to co-ordinated muscle response – that it cannot cope with “new and unfamiliar” information as well. It sends it into a spin, and the person’s anxiety that it will do so yet again, will make sure that it will as it is an additional stress.

    Nothing to do with intelligence or losing it! On the contrary: think of the enormous work the brain has to do every second to keep your bodies – more or less- going. It’s a superhuman effort.

    Liked by 1 person

      • E.g. when, instead of your limbs just doing the right thing, you have to look at them and give them an order “stay flat on the floor, feet!” … your conscious brain is doing work it is not supposed to do. No wonder it gets stressed when it has to process an influx of new information as well! You, who manage to go on functioning in spite of you neural transmission problems, have a superb brain that is extraordinarily intelligent!

        Liked by 1 person

      • Thank you, I guess maybe once again I am being hard on myself, but I feel it’s important for me to write these things, as maybe there is someone else out there who is going through the same. Even if we don’t understand our traumas, knowing we share it with others, some how helps. 🙂


    • Hi Hilde,

      Snap, that had to be my first word as I am identical to your husband. I can not cope with the slightest change in my routine. Mine goes right down to the level that if something is in the wrong place, just totally throws me and I go into an agitated state. Life has to be identical daily, or I simply don’t cope. I hadn’t thought of phone calls falling into that, but I guess there could be a connection. Something to think about. Thank you 🙂


  4. Hi
    When I was going through the PIP process, I found the Citizens Advice Bureau invaluable, I met with an advisor who helped with the forms. I also kept diary ( for a few weeks) of how MS effects me.

    Good Luck


    • I have been given the address of a website that my husband is going through. He seems to think, that it contains all the help we need. It seems so wrong that any of us have to go through such an over extended process, just to get help.

      I hope your hard work was successful 😀


  5. I had my PIP letter a little over a month ago, I have my face to face visit on Monday. I had been dreading the whole thing for ages. I get confused by a lot of things but thankfully had my wife to do the phone calling and form filling. I have decided that I can’t do anything but be myself when it comes to the appointment so if I don’t qualify for PIP with all my problems there is nothing I can do about it. I will be glad when it is done. I have been looking for work for a while but it is tough to find anything I could physically do but if I “fail” the PIP test I will just have to find something!!


    • I guess that there is little we all can do other than be honest. It does though seem wrong that if you have been in receipt of DLA, that that payment can be taken away from you, especially, as your health may have in fact become worse.

      I wish you luck with your face to face and that they see you in a favourable light (((Hugs)))

      Liked by 1 person

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