I want it so badly

I mentioned the other day that I had received an appointment to go for a breast scan. In this country, once you have passed the age of 50, it is one of the checks offered by the NHS for free. I did receive an appointment last year, but I chose not to go, as I explained a couple of days ago. For some reason, I have been putting off phoning them, to see if the situation of wheelchair access had improved. I find the phone at best difficult, and at worst, my worst enemy. I don’t know why, but my emotions react far more rapidly, when, I can’t actually see the person. I don’t fully understand the damage that has been done to my brain, but what I do know, is that tears appear when I least expect them, and frustration, builds rapidly, if, I can’t make myself fully understood. Hence, the fact that I normally ask Adam to make all calls on my behalf. So why did I decide that it was me who should pick the phone up instead of him? Well, because it’s me with the issues about going there, not him, it somehow made sense at the time.

Once again the girl on reception was rather useless. I am beginning to believe that all NHS receptionists are actually trained not to listen, as I have yet to find one who does. When I said that you’re not allowed to bring your own chair, when travelling by hospital transport, she more or less called me a liar, which I found really hard to get past, without losing my rag. I really don’t appreciate it when I am told I am wrong about something I know for a fact, I am right about. Every time I book an ambulance, I ask if I can take my own wheelchair, as it makes life so much easier, I am always told the same thing, no. It didn’t help matters, that she was another one of those people, who wouldn’t allow me to complete what I was saying, and answered what she expected my question to be, rather than just listening. As always happens in those situations, she was telling me things that I wasn’t interested in. I really don’t understand why people do that, as it achieves nothing. It turns out, that though that there are only two slots each day, put aside for wheelchair users. So they have canceled the appointment I had in February and are now sending me out another one, this time, for March. For me, that is a positive, as it gives me the whole of next month, hospital free. Annoyingly, though, those appointments are at 12:00 pm or ten minutes past, not as is best for me, first thing in the morning. Once again, I did try, but she said they were the only two slots for disabled patients.

I still don’t know how I feel about the whole thing. This whole business of arriving in a highly visible ambulance, right in the city center, at what I now know will also be lunchtime for many people, it really doesn’t sit well with me. Humans love to stare and I’m not comfortable, about being the one, they will be staring at. I suspect, that if they actually spoke to all their disabled patients who are affected by this, that the majority would feel the same way. As I said before, I fully understand the thinking behind putting this center where it is. It makes it wonderfully accessible for the able-bodied, but for the rest of us, it’s really not appropriate. When you arrive by ambulance at a hospital, no one pays any attention, it’s normal. In a city center, it’s something to gawk at. Last time I justified not going because I didn’t think there was a need for it. I know that reasoning doesn’t add up, any more than the one I came up with the other day. If they were to tell me I had breast cancer, it wouldn’t change anything for the better, just supply more people to poke at me, and possibly, a change to the already ticking clock. Before anyone thinks that I might be scared of this, well think again. I have gone through a breast scan before, and that time, it was because I had found a lump. It had actually burst before I reached the scan date, but they did it anyway. It really is just a combination of the above, plus this growing desire to be just left in peace, especially, from everything medical.

I have been finding this feeling growing lately. I don’t know what sparked it, or exactly when it began, but it is growing. In a way, I even now resent the time it takes each day to use my nebuliser, inhalers and even to take my tablets. Yes, I know it all adds up to only about forty minutes out of my day, but I do frequently find myself sitting in the kitchen, staring at it all and wishing it would all just vanish. It has now even extended to my psyllium pancakes. It stupid, I know that, but we can’t change feelings. Feelings don’t obey us, they are one of the few things that we can do nothing about, other than feel them. Clearly, I am not just going to stop taking any of them, I would just like to understand, why after all this time, this is how I suddenly feel? I simply can’t be bothered by this whole paraphernalia that goes with being ill. I have more than adapted to the lifestyle. I have adapted to the fact that I am housebound and all that goes with it, but right now, I just can’t stand anything to do with doctors, or the stuff they insist, that I need to take. The best way that I can put it, is, to say, that I want them and all their bits and pieces, to leave me in peace.

I guess that sometimes we just want the impossible, to be made possible. I yearn to have just even one day, one, where it wasn’t governed by an alarm clock telling me, it’s time that I took this pill or that. I was pleased when they told me on the phone that my appointment would now have to be in March. I was pleased because, I will then have had two whole months, without trips out to see doctors. Inside, I am screaming with a need to never go out and see any of them ever again. In the year I became housebound, it felt like I was at the hospital every week. I was seeing this person or that one, in the attempt to get my hand back working, so that I could once again go out. They failed. Over the following year, it slowly returned, but as it returned my tiredness increased ten-fold and my ability to walk, diminished. I might have had two hands, but I wasn’t able to go anywhere. Then came four wonderful years, when I didn’t see a single doctor, I didn’t leave here at all. I knew it was too good to last forever, but boy was it good. Then once again, my health went downhill so fast, they were back in my life, and there has been no escape ever since.

Peace, glorious peace. For someone who sees no one, goes nowhere, that should be easy. It should happen every day, but there is none, not in the way I am looking for it. I want it, but I can’t really explain it, other than that one word, peace, and that I know that I want it.

 

Please read my blog from 2 years ago today – 31/01/2014 – Loneliness

Adam didn’t make it home until long after I went to bed, I watched Eastenders and headed straight of to bed, with no struggling to stay awake just so I can spend more time with him. I have wondered often how I would…..

 

 

 

7 thoughts on “I want it so badly

  1. Dealing with Healthcare providers, The long waits and rude people who provide it is indeed the most frustrating part. Wanting to give up taking the meds and all the goes with it is also very understandable. Doing that is signs of wanting to give up. That is to easy. Trying to change the way Health care is delivered and the way people treat those who are disabled? That, That will be always a life long struggle that will never end. With out the meds we do not survive long. We become miserable. They, like air become the fabric of life until the end

    Liked by 3 people

  2. And why should you not have peace? You, and everyone, determine your own participation in the world, medical or otherwise.

    Recent studies from Sweden have demonstrated that routine mammography does not impact cancer deaths, but it does lead to many unnecessary procedures, surgeries, treatments.

    In the context of my own illness, I think: what would I do if I had a new cancer diagnosis? My answer to myself is: try to pack as much in as possible. Read those books. Call those old friends. Patch up frayed relationships, cancel grievances, sip my favorite potions, gaze at my favorite vistas, go in peace.

    Peace is possible, but it’s not passive. We must create peace. It’s possible. We do have choices. Of course we take our pills, because otherwise we would be uncomfortable. We don’t have to be ill simply because we’re disabled. And we have total control over what kind of elective procedures we subject ourselves to….or not. Visualize your peace. You can create it.

    Liked by 3 people

  3. I understand the resentment of time, right now I have estimated it takes 2 hours to do all my nebulizers, sinus irrigations, fill the humidifier, take pills, inhalers. What could I do with those 2 hours? Unfortunately I won’t know, once my lungs clear it should be down to an hour. I do try to find some productive things to do while nebulizing blogging, finding new recipes, clipping coupons. Always trying to stay positive.

    Liked by 2 people

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