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.

Finding belief inside yourself

I am starting to really feel the house being colder but I am still holding off the idea of putting the heating on. I have always been aware of the amount of electric and gas we use but it is worrying me now more than any other cost that we have to cover now that I am not working, I normally love winter and opening the curtains to see the world white with either snow or just frost, so far I have seen it only once, but this time it filled me with dread. Illness eats into so many small corners, what was once a simple joy is now a fear to be dealt with. I suppose much of my life could be seen that way, especially from the casual observer, but it is a million miles better than most think. I was asked this morning how I dealt with the really bad days, if I was totally honest I would say the simplest answer is that I deal with just as any other day, they start, I write, I read, I eat, I sit and I sleep, what changes is the time spent doing each and the speed each thing is done. I have like others that I now know, wasted time telling myself I will put that off until tomorrow, as tomorrow will be better, it is simply a case of kidding myself, yes tomorrow might be better, but it will never be again good. As long as I can find inside me, that feeling that life is still worth living then I am good and I go on. It is a belief, something you can’t be taught, it comes from inside and I believe that life is good. I don’t know what will be or if it will ever arrive a point that I will loose that belief or what I will feel if it did disappear, that is something that for now I can’t answer.

I find it hard when others want me to answer in a few words what it is that makes me still able to say I am happy and I can live this strange life that I find myself locked in. I worry that maybe I will say the wrong thing for that individual, as I don’t think there is a blanket one size fits all answer to any question like that. It may sound glib but I am happy because I am. If I asked you to analyses why you feel today is a good day or why last night you wanted to have a few glasses of wine, or why you love your partner, they are things that giving a concise and true answer to is impossible, because there is never one thing it is a mix of so many small things that make all of them what they are. Being happy is no different, nor are the other things everyone want answers to, I am what I am for more reasons that I expect I can even think of.

There are loads of things that I believe would truly help others to manage their illnesses and they are all written here in different posts, but the biggest one is here in this post and that is the belief that life is still good, that there is more than enough happiness to keep the balance tipped in favour of living and living with hope that life will remain good. You simply have to believe.

A great day

I had a really great day with Teressa yesterday and like a lot of things in life, it was over all too quickly. My guesstimate on the time she would actually arrive was almost spot on, so I managed to have all that I wanted to do before the doorbell rang. As always when she came through the door I had my normal reaction to her height, it doesn’t seem to matter how often I see her as an adult I will never get used to the fact that she is so tall, which kind of makes her childhood nickname of ‘midget’ all the more ironic.

We spent the first couple of hours talking about my health and her wedding which I, of course, have loads of things that I can’t write in her yet. The actual date seems to be the thing that is holding back on completion of the day, until all the paperwork is in order in the US and here in the UK for John to return here on the correct visa, that can’t be set, they hope to know by the end of this month if the present date of the Jan 24th will actually be the day, or if it all has to be changed. She has managed to arrange most of it with the elastic date, the venue has even been happy to allow for this but if it has to be changed, they will probably have to go with the day the venue has available more than the date the want it to be, but they are happy to go with that. I wish I could put more in here about the plans but well secrets are all part of planning a wedding, all I will say is that not just because she is my daughter but because it is true, she is going to look amazing on her wedding day as she had brought some picture to show me.

We, of course, spoke about her fiance John, but I realised later that I had actually not asked one of the questions I expect most parents would have about him. I really didn’t ask about his background or work or any of those things and it wasn’t because I wasn’t interested, it was simply because none of those things mean anything to me, I just wanted to see in my daughter’s eyes that she loved him as much as I thought she did and that she was sure about what she was about to do, those questions were answered without being asked. When you see your own child happy and set with confidence on their chosen route what more can any parent ask, her happiness shone from her. The afternoon was a total mix of general chat and silences as I lost track, again and again, I found myself constantly apologising and Teressa spent just as much time telling me not to. It is really hard even though she is my daughter to not apologise to someone who you know isn’t used to being around you for long periods of time.

At about 4:30 I suggested we had a gin and tonic, yes I needed a little Dutch courage which as I expected was found about half way down the glass. I was as I suspected right, not totally, but yes she had returned to the UK as she was worried that something might happen to me and she wouldn’t be here, close enough to come and see me. The discussion circled through different areas but her words were as filled with feeling as mine were, I already knew that part of her return here was because of the job offer from Sega UK. Almost as soon as they made her redundant in the US they offered her a promotion and all travel expenses to come to the UK, but I also knew she had been thinking of coming home before that offer was made. My health had had a bearing on her decision to accept the offer, I am still not sure how to feel about that, honored is probably the closest description, but I made her promise me that should any opportunity arise in the future that she isn’t to consider me above what it offers as I want her to live her life to the fullest, as well you never know when something can change so dramatically that you might not be able to do it later.

By the time Adam came home the tears were cleared and we had said what we both needed to say as I wasn’t the only one who had things that needed to be said, she had many things she needed to confirm to me and I suppose explain her feelings. It isn’t often in life that we take the time to go into difficult things to talk about, but it is I think good to do so rather than just let them stay silent. The impact of MS is so cruel on those around you, and the only regret I have in my life is one I can never change and that is the impact on those around you. It also leaves me with a guilt that I will never be able to stop feeling for the knock on effect is uncontrollable, as I said to Teressa yesterday in some ways for me it is harder to watch the lives of other being changed around me than it is to live with it at times.

We spent the last few hours the three of us talking again about the wedding and enjoying a now rare treat of a Chinese meal, which I paid for later in the stomach cramps from hell as I was trying to go to sleep. I made it through yesterday without an afternoon sleep, but I have to admit to being over tired today. Just as going out has a knock on effect, so does having a visitor regardless of how welcome they are. I was glad that Adam come home when he did as I could relax more, not feeling that I had to talk all the time and he supplied me with gaps to compile my thoughts slower before speaking. We had a really good day and I was sorry when she had to go but there was an hour long train journey until she was back to where she was staying. I didn’t go to bed the second she went as I wanted to also spend sometime’s with my husband and talk through the day, but about an hour later I went to my bed. Today, well I am really glad I asked what I needed to know and I am at peace with the answers as well.

 

Please read my blog from 2 years ago today – 02/11/2012 – A great day

I had a really great day with Teressa yesterday and like a lot of things in life, it was over all too quickly. My guesstimate on the time she would actually arrive was almost spot on, so I managed to have all that I wanted to do before the doorbell rang. As always when she came through the door I had my normal reaction……