The time to give up

It’s just a weekend, another one out of a lifetime of weekends. Another day, that’s all life really is one day, followed by another day, yet it’s the thing that we hold onto, like nothing else, it’s our life. To an outsider, to someone who knows nothing about me, they might easily wonder what on earth am I holding on to. Bluntly, “What is there left to hold on for?” That exact wording and feeling behind that question would vary wildly depending on the age of the questioner. To a child, someone who is aged 54 should be dead anyway, they’re too old for there to be a point to their life. I can with ease remember thinking when I was a teenager, that I would be dead by the time I was 21. 21 was horribly old, past it and useless. I had seen Adults who went past that point and their lives seemed so dull, just drudgery. They never seemed to have fun, all they did was work or sit around their houses, surely that was a pointless existence. 21 was a good age to die. It was the age when your body was an adult, but not damaged by wrinkles or the other horrid things that life did to them. At 21 you were still young enough to be a beautiful corpse. Yes, I was an odd child for thinking as far as a corpse, but the rest, no, I knew many who felt that way about growing up.

At the age of 21, I had something that made my age, totally unimportant, I was a mother. My age, what I did, in fact, everything about me, no longer mattered, it was all about her, my perfect little daughter. I had grown up and somehow, I wasn’t old, I was just me. I still couldn’t imagine ever being old, not even 54, nothing to do with my childhood belief that life that old was pointless, but this was me, I was beyond that, I couldn’t grow old. I hadn’t even made it to 21 when I had already made up my mind, that no one should suffer, that we had a right to decide, just how much we could take. That ultimately, we should be allowed to call life to a halt, when we were ready. Having watched my first born fade and die, I understood better than many my age, just what death meant and just what suffering was. I expect, that if I had seen someone with as many things wrong with them as I have now, and who was housebound. I guess, I would have been wondering, “why?”, “Why haven’t they called an end to it? What could they possibly have, to stay on any longer for?”.

Throughout our life, more dependent on what is happening to us, than the true bigger picture, we look at the chronically ill and the dying in different ways. I can understand many might wondering what value, or what purpose my life now has and that doesn’t bother me in the slightest. It is one of those things that I have frequently thought about throughout my life, not just towards myself but to others as well, as what else is pity, other than looking at someone and thinking, what is the point? We pity because what we are seeing is a situation we ourselves couldn’t cope with, or at least believe we couldn’t. So, OK, people can’t see me, but that is probably the bit that makes my situation in life pitiful in the eyes of others, and I get that. I never once remember thinking about what it would truly be like to be housebound, not until I started to see that it was more than likely my future. I freely admit that the whole idea terrified me at first, but not maybe for the instant things that the youngsters out there might think of. They would worry most about the loss of all the social activities, the going to the movies, walking around the shops and spending time with their friends. I feared losing my job and not being able to pay the mortgage, that was my first fear and it terrified me. In fact, that was my very first thought when I first had it suggested that my MRI scan meant that I had MS. Not about the shortened life, the pain or anything to do with my health at all, it was all about how I was going to keep working.

I had been brought up to believe that we all had to do our bit in society, have a job, pay our taxes and generally do the things that keep the world’s markets ticking over. Sitting at home, wasn’t acceptable unless you had a child, then your full-time job was being a Mum, otherwise, you had to work. I know not everyone will totally agree with all of that, but the majority will agree with the first bit, you have to have a job, if you don’t, well your sponging off the state. The tax paying majority are pretty unforgiving, unless, they know someone who is a genuine case, but still, some aren’t convinced about the rest of us. I’m not sure what the exact split would be, but there are clear sectors. Those who pity, those who care, those who doubt and those who can’t see the point of us at all. I remember hearing someone, a long time before I was truly sick, saying to someone else, something along the lines of “Wouldn’t they be better off dead?”, they were talking about someone in a wheelchair. It stuck in my mind because it shocked me, I had never heard, or even come across, anyone, who thought that way before and I couldn’t believe, that anyone could. I was young, I know better now. Something on TV the other day brought it back and it triggered a run of thoughts, hence this post.

How we measure what is a good life, changes throughout our lives, from our teenage years on. As I said, I can easily see an outsider wondering what I am holding on for. It’s not as though there is a nice little equation that says this is a life worth living or not. No sliding scale or even anything to measure it against, other than our own personal experiences. Just as our viewpoint on other people’s lives changes, so does ours on our own, but when it comes to our own, it is far more subtle. It doesn’t matter what happens to us, we have a drive inside us to keep going. Long-term readers will know that there have been times in my life, where I lost sight of that drive totally, then, life wasn’t ready to give up on me, hence why I’m still here. Nearly 15 years ago, at a time when I thought my future had never been brighter, I was handed a death sentence and another just over 2 years ago. It is the oddest thing being told that life is giving up on you, and the ultimate proof it is the most contrary thing that exists. We might think that we are in control of it, or at the very least that we can take control of it, but we can’t. We might think that if we were to lose our health, but locked inside our homes that time would drag and all point would be lost, but it isn’t. It doesn’t matter where we are in life, what we have or what we don’t have, life will go on as long as it wants to and as long as we have someone we love, someone we can’t bear to be without, we will hold it tightly.

I still believe what I thought when I was 21, that no one should suffer and that we should have the final say, but once you are here, in that pain and at times suffering, we still have much to live for. Living with a ticking clock, having to swallow handfuls of drugs just to get through the next few hours, isn’t the worst thing that can ever happen to you. Oddly, just like the rest of life, there is much to learn, much to enjoy and much that means I still greet the new day with a smile. None of us can judge the life of another. None of us have the right or the knowledge to do such a thing. Both of those statements work both ways, only I have the right to judge my life and only I have the knowledge with which to do so. It’s not that I don’t want to tell you, or that it is a secret of some sort, it’s that I can’t. I could give you a list as long as my arm, at the top of which without a doubt would be Adam, but even my entire list, wouldn’t explain it. Ultimately, I don’t feel any different about living than I did 15 years ago, before they had even told me, I was in it’s closing phases. Even now, the truest thing I have ever heard said is “Life is what we make of it”.

 

Please read my blog from 2 years ago today – 29/11/2013 – One sided worlds

I woke early this morning as I was desperate to go to the loo, I really hate it when that happens especially as getting out of my bed without using the elevator although still possible is painful, but using the …..

 

 

 

Forms to fill.

I don’t know exactly where it is coming from as in MS or other, but I feel really terrible today. As yesterday went on I felt more and more ill and more and more in need of my bed, I went there at 8:30 last night but I think I should have gone at 7 when I wanted to. Anyway I slept to the alarm and I still feel like I haven’t slept at all. Mind you it has been a busy morning for me as the shopping arrived and is now all over the hall floor until Adam comes home and clears it all away. That activity would add up to the way my legs feel but not the rest of me, I just feel like giving up and sleeping for the rest of the day, not hiding just escaping.

Before I can escape though I have to fill in this form from the pain clinic, probably good in that case that I am not having a brilliant day as when things are really good I have the human problem of down grading the worst to just past OK. The sheet start with drawings which it asks you to shade in where you have pain, mine is almost all shaded, they wanted me to put crosses where the pain was at it’s worst but other than a couple of areas that I could do that as the pain from MS is all over rather than point driven, but I have done what I can and I will be there to explain my bad descriptions.

Next they wanted a date for it all starting, for me that is easy 1981, as it didn’t start due to an accident or event I had to pass on that part of the question. The next I found a little harder as they had a list of 45 words that people use to describe pain, I was actually surprised by the list that they had put together as I can’t imagine anyone using most of them, for example ‘Stretching’, ‘Sad’ and ‘lonely’, the last two are emotions not measurements of pain, well not to me anyway. I have circles 14 of theirs and added two more of my own as it says you can. The problem with this section though is that depended on what day it is I would use different ones, it is not like it is the same all of the time.

The next three are “When do you get the pain?”, “Is there anything that makes it worse?” and “is there anything that makes it better?”. I am at this point getting the impression that this for is for someone with pain in just one or two area’s and not everywhere and anywhere. I have answered as well as I can and resisted the temptation to say that Gin made things better, but the first two where easy, all the time, and then activity of any sort.

The next three are what I expected and what I also hate, scales, marking things from 0 to 10, for the worst pain in the last week I scored and 8, the best for the last week a 4, and the average for the week 7. I don’t like these scales really as they again rely on memory and personal perception. I have said the worst for this week was an 8, that is my level based on what I have to compare it to, you might have said it was a 10 or declared me a wimp and put it only at 4. I just turned to the next page and there are more scales to deal with, pain right now? I would say 5.

Question 8 is in loads of sections, they want me to scale how much pain interferes with different activities. First they want to know about general activity, I have got a little cleverer and marked 8 to 9. The problem with this section is that it isn’t just pain that affects all the things they are asking. I am having to try and separate pain from fatigue and everything else. Nest they want to know how it effects mood, I gave that a 3. My walking ability, 6 to 7. Relationships with other people I had to put in at 9 to 10 as I see only one of my old friends, MS stole the rest. The affect on my sleep is a little awkward as once I am medicated highly enough I sleep, so I put it at 6 to 7. I gave the same score to my enjoyment of life, I didn’t really know which life they meant but I guess they want me to score it against an average life. They made that one easy with the final one in this section as to how much it interferes with hobbies and so on that one got a full 10.

The final page is all about my medications that I am on and here is a classic one to ask for someone with a bad memory the names of all the different pain meds I have ever been on. I really don’t think this form has been written for some one with the conditions I have. If you have been ill as long as I have it is really hard to make any of those answers fit. There is no base line for me to fix anything to as everything has been part of my life and I have adapted that life to work with the limitations. I guess that I will have the chance to go over it all with them when I get there. The last 5 years of isolation have had this wonderful protection built into it, I didn’t have to keep going over and over again what is wrong, why I do or don’t do things and how it all effects me. I know I opened the door and asked of help, but at times like this I wish I had kept it firmly shut.

On the up

I am doing well today at what I am not sure as I keep forgetting but I feel up and that is good. I remember having a clear plan this morning of what my day was going to hold but I lost it somewhere along the way. I managed the shower and hair wash and I am up to time with all the normal things but I know there is something missing, something that was clear when I got up but just 3 hours on, I’m lost. I often have days like this, so not knowing where I am and where I am meant to be, isn’t new by any stretch of my imagination but I can say clearly that it is a good day for one reason and one reason alone. I don’t care that I haven’t a clue about anything! I know I have mentioned before that I frequently thing that my forgetting is a strange twisted gift, as well, if you can’t remember, you can’t tell yourself off for not doing something.

Despite feeling good about today I know that last night I had the same thing going on, as when Adam came home I know there was something I wanted to talk to him about, but I couldn’t remember and like this morning I didn’t care, it was just this strange little voice in the back of my mind, edging me on all the time saying “you have to talk to him about…..”. I still don’t have the slightest idea what it was about, and I am still not worried in the slightest by it. If only I could select the things I forget, life could be very different in deed.

I have what might sound a little odd but I have sort of fantasied view of my future life, I know that everything that is wrong with me now is only going to get worse, but in my fantasy I will have a future with a mix of yesterday topic and today’s. I see a life where I sleep a lot, but when awake forgetting all about wasting my life in bed and totally not worried about getting absolutely nothing done, combined with this nice happy feeling. It feels strange looking forward to a life of totally not caring and sleep, but out of all the possibilities it sounds really good. I of course also have a worst case scenario as well of being locked inside a body raked with pain and no way of telling anyone, if there was a choice system it would be easy.

Recently I have been in this position of feeling good from somewhere deep inside more frequently, and it is a welcome break from just pain, it’s not as thought the pain has gone but it just somehow doesn’t matter as much. Like most things thought I question it’s source, nothing happens for no reason and there has to be one. The only one that makes sense is that my endorphin levels has been raised, for that to happen my body has to be reacting towards something, but what? I can’t help questioning everything these days, with so many problems going on physically I constantly questions myself, what is that pain, what origin of my body is there, why have I suddenly gone numb and so it goes on. Getting an answer to any of them would be nice, to all of them amazing! I know the NHS moves really slowly, but it is getting to me a little as it is now about 8 months from my first asking for help, to still not having an answer or a solution. Unfortunately to date I haven’t managed to forget about any of that, but that’s life, things rarely go as you want them to.

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┬áthan 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……

Questions

It is all to easy these days to get the impression that everyone in this country and maybe in the entire western world has gone mad. I know values change and so does technology and expectations, but when I heard lately that one of the items now in the list of essential items, used to determine if you lived in poverty or not, was a mobile phone, I couldn’t help wondering if the word poverty in the UK had actually lost it true meaning completely. I used to laugh when I heard my mother always harping on about how lucky I was with everything that I had in my life, but now I find myself saying just the same thing. I guess without knowing it I must have had several points in my life when I was living in true poverty, as one of the other things that was classed as essential were disposable nappies if there was a baby in the family. When Teressa was born in 1980 and I didn’t even have a washing machine for the first month and yes that meant I had to wash her nappies by hand, when I did get a machine it was a twin-tub. The nearest phone was a good 10 minute walk from the house and she had to sleep in my bedroom as the spare room had water you could sweep across the floor with your hand, but the Navy said it was condensation. I have lost count of the number of times in my life where I have spent the last week of the month living on porridge as it was all I could afford, but not once in my life did I ever feel I was living in poverty, as not once have I ever had to sleep rough.

I suppose we all have our own views of what poverty or wealth real is in our own worlds, to me poverty is more a feeling than just a counting of the money available. The closest I have been to feeling poor was when I first moved to Glasgow and I was living in a bedsit, with no real heating, shared everything outside my room and very few friends, as I knew very few people. Looking back at that time, my health was bad and I went through another of those Doctors who saw me as a pest with nothing wrong with me. Just sitting here thinking back over that time I know now that that was really what was behind my view of life at that time, as always my health. It is strange how you see things differently when you understand what was happening, and how it changes the whole period in time from really quite awful, to now I know I was ill.

I suppose that is the key thing about growing older, you can see clearly what the reasons where for all those strange things you did, that at the time you thought were for very different reasons. As they say hindsight is a wonderful thing, I probably would have done a million things differently if I had just known I had MS and wasn’t a weak waste of space. But even with all that said I still can’t say that I have ever lived in poverty.

Try as hard as I can I have never been able to look back on my life and see the horrors that other do, when I tell them about it. I have tried many time to find out what it is about me that sees the world in such a different way from others. I can’t explain it and I don’t understand it, but all of my life has been to me a rich mix of many things, all have shaped me and all have taught me more often hard lessons about life, but not one that I am angry about, or one that I can say has made me hate anyone. I really want to understand, but this I guess may be something I never will understand, what made me the way I am? I guess I will always be the person who smiles to themselves and can say with honesty and warmth in my heart that I love my life from the start to now, and I would never change any of it, as without it, well who would I be?