Finding a new way to smile

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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

Adam is at work with it being Monday, but although for most of the weekend he seemed to be avoiding setting up his new laptop, he eventually got round to it yesterday afternoon. I honestly think he was worried about it with it being a Mac and not a PC, I kept trying to encourage him to just plug it in as I was sure that it wasn’t as bad as he imagined. Yes it was going to be different……

36 thoughts on “Finding a new way to smile”

  1. It’s always better to ask for what you need and hope for the best. Than to not ask at all. Also, sometimes a case manager sees lots of people and there will always be people better off than you and hopefully worse off than you are so its a little comforting that someone out there has a crappier deal in life than we have.

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    • Oh, I asked, I asked over and over and I got nothing, so I stopped. When you are turned down without reason, you assume that it’s because you don’t reach their qualifying point. That’s why suddenly getting so much, is overwhelming. I have never met so much care and kindness in such a short period of time. 🙂

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  4. It’s no wonder at all. Having recently experienced the horror of a couple questioning whether I was disabled at all and treating me with suspicion and cruelty (but that’s another story), it does only take one decent person to provide the necessary in terms of practical help and kindness to overwhelm one. I can feel your joy from the other end of the country. xx

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  7. Hi Pam,so happy for you,that at long last the gears are meshing.That you seem to have at last a caring and qualified team.Keep them safe,they are doing a good job for you and the difference shows.Sending love.Nx

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  8. I feel your emotional gratitude that someone actually listened, cared, believed your necessity in needing aids and care to make life more comfortable for you. Just knowing someone really understands the difficulty you go through on a day to day basis must mean the world. I am thrilled for you Pamela and please God may you receive an electric wheelchair so you can be more mobile without so much inflicted pain caused by pushing yourself around your rooms. Your post has put a smile on my face this evening, a big thank you to your social worker and district nurses. WONDERFUL! ((HUGS))

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  11. I’m so happy that things are going better for you. Sounds like you’ve got a great team there, and remember to ASK when you need something!

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  12. I am not surprised that you gave up, it is hard to get anyone who hasn’t lived through decades of being brushed aside and ignored to understand how soul destroying it is. I cannot tell you how happy I am for you that now you are being heard. We all have different kinds of voices, voices that cry out for our bodies, our souls, our hearts… and too many times those voices are silenced. I love that you are at least being heard and cared for as you need 🙂 You are right, this is just the beginning 🙂

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    • Your right, others don’t get it, but to me, it has been life changing. In a few short weeks, my life has been restored. If only people could understand just how something as simple as carrying out their job, but with a smile, caring and love, they really can change lives. It doesn’t matter who they are, or if they medically connected or not, they all have the power to help people. If only they would try (((Hugs)))

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      • You have to love those smiling kind faces.!! And the nurses,, I bet they know a lot of good jokes. Most of ours do. They keep us laughing all the time……A couple of moms knock on the door and soon as she opens it the nurse starts telling here a joke so a really funny story. And it help my mom so much. She still loves to tell jokes her self. She is so funny when she is feeling even halfway good…I love her. She makes me laugh when I don’t want to. Lol.

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  14. I’m really glad you’re finally being supported. I’m constantly reminded how naive most people are to these types of battles for recognition or acknowledgement. Just to be taken seriously and treated with dignity that should just be a given Xx

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  15. Bravo – this resonates with me so deeply and is the main reason I’ve decided to start my blog. Living with multiple chronic illnesses are so very hard and very lonely but the best thing I did was ask for help because as I worsen, my most devoted supporter my husband can’t do all the caring of me by himself.

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