I found myself sitting here suddenly in tears, they were pouring down my face. My life has been flipped over and over in the past few weeks, and I suddenly realised that life, my life, is so much better than it was just a few weeks ago. This group of people crashed into my world and nothing has been the same since. So OK, I did invite them in, but I just never expected so much to change, nor did I think it would happen so fast, and it just keeps happening. Yesterday morning the phone rang, it was a delivery man, with the new pressure mattress that less than a week ago, I asked the district nurse if it were possible to get one. All I have to do is open my mouth and these people help me. It suddenly felt overwhelming, I don’t know why now, but it is. This is something else they don’t tell you when you first become ill, it takes just one or two really good people, to make up for all those idiots, and their hurtful ways of treating us, their ignorant questions and their total lack of care.
Between my social worker and my district nurses, everything has changed and I already know, that it’s not going to end here. It is a bit like someone has just picked me up in this huge feather duvet and are cuddling my life back into me. For so long I have struggled, with just Adam beside me, because I didn’t believe that the help was actually out there, and if it was, they wouldn’t help me. Why? Because I didn’t believe that I was ill enough. I thought that they would take one look at me and say what everyone else says, “You don’t look ill”. That’s just the way that it has been for the majority of my life, so why would it change, why would anyone look at me, and say “Here, here is the help you’ve been silently asking for, for years”.
When you have spent a lifetime, fighting with doctors, who didn’t think you were ill. Trying desperately to be believed, but finding nothing other than condescending medics who pat you on your head, and send you home. When finally they do believe you, there is no sorry, no we got it wrong, just a swift moving on, piles of tablets and no real help, with all that is happening to you. Through all that time, trying desperately to hold onto a job, because I couldn’t see, how I could survive without the money. No matter how bad you feel, no matter how ill, you just keep going, until you can’t keep going at all. So why would someone ever turn around and just agree with you? Why would anyone, give you the help that you know you need? Not only do they agree with you, they hand you all the help you need, without a second hesitation. It doesn’t make sense, but that is just what keeps happening. I ask, and they agree. Not only do they agree, they make sure whatever it is, happens, and happens quickly, not once but again, and again, and again.
I never imagined any of this possible, yet here I am, with carers, new equipment, medical back up when needed and even emergency supplies tucked away, in case of certain things going wrong. They are fixing my fears, ensuring my safety and setting things up, so should things go wrong, I can always get help. They are giving me something more precious than many might be able to get their heads around, the chance to just live, without any more worry than an abled bodied person might live with, and that means a lot.
Outside of Adam, no one has ever been this way towards me. No one has cared, really cared, really wanted to make a difference. Yes, I’ve had words in the past, the odd one here or there who has listened maybe helped me in the instant with this or that. But once that was done, they vanished. None ever asked is there anything else, none ever took the time to explore what might be needed, what might make a difference. They did their one bit, then left, and I struggled on with all the rest of it, once more feeling alone, once more being alone. In the past nine years, I have lived in this isolated bubble, housebound, without even a doctor who came to see me, even when I was really ill. No one came near me. Yes, I went to hospitals, for tests, for diagnosis of more conditions to add to my list. But that didn’t really help me, just offered sticking plasters to put over gashes to deep to ever heal. Smiling faces with the words “Your dying, we can’t do anything to really help. Take the tablet, they’ll take the pain away.” Tell me, what does that really fix? Yes, it’s one element, but there is so much more.
No one tells you how the system works, no one gives you a book of telephone numbers to call or even advice on what help is available. No wonder we feel alone, that we are isolated, inside this world that was built for the able-bodied and the well. Yes, I’m housebound, so no the height of the curb no longer bothers me, nor does the fact that what they call wheelchair friendly, rarely is. But it does bother me, that the cooker isn’t safe when faced from a chair, that the bed needs that mattress so I don’t get sores. It does bother me that trying to get around my flat in my chair, almost kills me, that I am permanently fatigued and that I can’t even wash myself. Is it any wonder that I am overwhelmed by people who listen and who act? Is it any wonder that suddenly, I’m starting to feel alive? Is it any wonder that I am suddenly beginning to feel like a person again? I don’t think so.
Please read my blog from 2 years ago today – 08/09/2014 – An eye on the future
Two Rooms Plus Utilities 