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…..





Adam is on holiday today but I am still on my own. He has taken what I know is a much needed break for him and gone to see his Mum who live about 40 miles away. Because of the distance he doesn’t really see her that much, having said that, I have never known someone who once they have left the family home, who has spent so much time talking on the phone or texting each other. Our families are so different, mine is totally fragmented and if I speak to my Mother more than twice a year, I know something major has happened. I left the family when I was just 12 and I think without exaggeration I could sit here and count how many times I have seen any of them since I left Aberdeen when 16. As hard as I try I can’t get my head round the constant chatter between Adam, his mum and his sister, any more than Adam can understand that my family specialize in ignoring each other, although now aged 52 I still have the respect I was taught for my mother, but absolutely no desire to be anywhere near her. I have little to gauge it on but I guess we are the two ends of that spectrum and most families are somewhere in between.

I always laugh when doctors or medics ask me that constant question about do I have my family around to help me, I always answer yes as trying to explain that outside Adam and my daughter in London, there is no one to help in anyway at all. People seem to expect for some reason that just because you are ill the the world will rally round and take over everything that you can’t do. My experience and that of many others is the absolute opposite, the reality is that as your illness gets worse more and more people vanish from your life. For the last 3 years I have really seen only medics, Adams family a couple of times a year, Jake a couple more, I see no one. If you have been reading for a while although you may have been thinking it just wasn’t something I talked about, the truth is I now only have one that isn’t part of my miniature family. Medics excluded, I spend 360 days a year seeing no one else apart from Adam.

The other week Adam was talking to his boss and I came into the conversation, she suggested that it might be an idea if I applied for a carer, someone who would come in to see me a couple of times a week, just to help me during the day and to keep my company. Adam laughed and told her exactly what I would have done if I had been talking to her, it would be my idea of hell! I accept that one day I won’t have a choice, because I will need help with the simple personal care things I do for myself, but now I manage fine as I am and I really don’t want forced company. Because my ability to do things varies and I often just want to lie down and rest or sleep when I want to, having someone that I would have to stop writing or not have a sleep because they are here, would be a total pain. Especially a stranger as it take so much effort to make conversation with those who know nothing about you, which is also completely draining on the energy side. Now that I am settled into this way of life, not having to explain or not having to make excuses for the things my body does, I am extremely happy.

I don’t feel that I lack company, or that I am isolated, or any of the other tags that are attached to the housebound, by those who aren’t. You really have to live this life to understand, it just isn’t any of the things you think it will be. Like I said yesterday, your entire mindset changes and so do your requirements of the world to find happiness and your place within it. I often think that the able bodies world problem in understanding comes from our penal system. Those who break the law are locked away from the world, we put them in jail, remover their right to freedom and contact with all the things that we seem to think are required for happiness. To many I can see how my life may seem just like theirs, I am locked away from the world, I have no freedom in the greater meaning of that word, but that is where the difference is. I do have freedom, I can do what ever I want, when I want, I don’t need a carer/jailer, as that is how it would feel, to regiment my life as they would want it to be. Forcing me into doing things when they were here rather than when I want to, being given this person who may have for what they think are all the best reasons and to them are caring actions, would kill me quicker than MS is managing to do alone.

My front door will remain locked for as long as it is physically possible to all of them, let them imprison those happy to accept it, but I won’t accept it, as it isn’t helpful, it would just be painful.

Dreaming of Cleaning

I was talking to Adam a few days ago when it came to mind that when I had all my pain problems and fatigue that the doctors either ignored or put down to depression, the one thing they all did was to put me on to Amitriptyline, in the 80’s that was the favored drug for depression, these days it is used as part of the pain control system and that is why I am on it now. I can see now why they kept telling me I was depressed as once on the drugs I felt better, I felt better because the pain was under some control, not because they had cured my non existent depression. It was one of those light bulb moments, two thing clicked together in my mind and suddenly made sense. Things like that happen from time to time, look back isn’t something I do a lot, when I am on my own it is more frequent that the past appears through conversation, or due to a TV program, but it is always relief to find an answer even 20 or 30 years later.

Time and time again people talk to me about living with pain and how I manage it, and how I feel having to live with it. Strangely in my quite moments it isn’t the pain that I focus on, it is my inability to do what I want, when I want. All the drugs I take do help a lot with controlling the pain and it really is a fact that most of the time it is a dull ache, unless the spasms start and them I know all about it, just as it was years ago before they gave me my first cocktail. Drugs help with the background or constant pain if you like, those sudden attacks, and I use that word to it’s fullest, there is nothing that helps, or at least not that they have given me. The majority of the time I live with pain that I can’t get rid of, but I will say with total confidence that without the drugs, I doubt I would be writing, as I doubt I would be able to do anything. As it is now, well I can live with it, I just wish I didn’t have to.

Pain is only part of my life as I said to be honest if I could bring back something I have lost it would be my mobility and fatigue that I would fix first. To have enough energy and ability to just clean the house, even slowly would mean the world to me. If I could turn the clock back even 5yrs, when I was already housebound, but I could do all the daily things I needed and wanted to do, that would be my greatest wish! I know most people dream of getting rid of the housework but we are all different and that really is my wish if I found a Gennie. The less you can do the more the small things become important, I know some will think I would be more likely to have said that I would want to be able to get out of my house, but that involves so many small wishes, to get to the final big one, it is a huge wish, so huge that I would in fact be wishing to be totally well again. A nice thought but not one that will ever happen, small steps are more realistic. I am not sure what the pain clinic will be able to do for me, but pain or not, it won’t be enough to give me back my freedom, as pain is not the only problem, it is just one of many.