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…..

 

 

 

Peaceful acceptance

I don’t know if there is a sleep specialist reading this or if any of you have the answer to something that I am find more than just a little ODD. This isn’t the first time that this has happened but as it is the second night in a row that I have woke around 5 am in pain and in the same strange position I thought I would throw the question out there. I have woken with my head on the pillow and my shoulders parallel to the pillow, my body is in line until I get to my waist where it sharply twists so that I have both legs out of the bed and both of my feet on the floor. In the last few months I have occasionally woken with one foot on the floor so the second one there as well is another move on, why any of my feet should be there I have no idea at all. I woke both yesterday and today due to the pain it was causing me so I must have been like that for a while. There is no sign that I have actually been sleep walking or anything like that, I thought when I had one foot out that I may have done that by accident as my foot or leg was hurting, so a little sense there but both? As I said ODD. I really hope that I am not about to start sleep walking as I am dangerous enough walking around when I am awake, I can’t imagine the trouble I would be able to get myself in to like that. LOL

Yesterday was really a very average day, without any great traumas which is nice. It’s strange how life turns itself upside down when it comes to just getting through the waking hours. I suppose like most people the days I remember and enjoyed where the days when something special happened or something just a little different, now the days I remember and look forward to are the average ones. The days without extra pain or accidents, or anything of that nature, just to be able to wake up, get up, coast through what needs to be done and go to bed, are wonderful. I realised that something else has changed dramatically as well, I no longer have days where I wonder what to do with my time. Clearly I used to work and like everyone else I had housework and thing to do, so that took the bulk of my time but I did have points where I wasn’t bored just trying to decide what I wanted to do. That never happens now. Part I am sure is because I have less hours in my day, but mainly it is I believe because I now appreciate all the time I have, every minute of it.

Your view changes once you know that your life isn’t going to go on for ever. We all know that one day we will die, but once you have an illness that will ultimately be the end of you and sooner than nature gives all humans, things change. I don’t know how many years I have, but I know they are less than I did have. Knowing that makes you look at relationship, daily activities and so much more in a different light, you also make decisions about what is worth you time and what isn’t, as the time you have is capped. It isn’t something that you sit down and work out on a spreadsheet, it is something that just changes without your permission. One of the strangest things that changes as well, is my acceptance of my own end, I don’t fear it at all and I have an amazing calmness about the whole subject. I don’t know why or where from, but I feel really peaceful and accepting in what will happen. Even knowing that from now to then, my health will go downhill and I will feel worse and worse, with more an more pain doesn’t scare me. It is just the way it is and it is just what will happen, I have no choice or way of changing it. I guess I wish this is one of those feelings that I could bottle and pass on to everyone else in the world. Once you are at peace with your life and you appreciate the time you have and everything that you can do, there is a happiness that settles inside you and life becomes a very different and enjoyable prospect. It removes so many worries and so many problems that it is hard for me to put in to words, it really is something you have to feel to totally accept and understand. I just wish I could share it.

Alternative Joy

It is hard for me to put myself in the place of a carer but I have tried often when I have seen the pain in Adams eyes, as though just looking at me is causing him pain and the tears are just below the surface. I don’t remember what the conversation was the other evening that brought that look to him, but I knew at that second he was in more pain than I was and it started me thinking.

I have often said that I felt it was harder to watch what is happening to your loved one than it is to actually live it, and that really is the truth. It is hard to find the words to use so that I can express this totally so bare with me as I work this through. Over the last few years were I have had to learn to deal with loosing my old life and adapting to one locked in a body that has little resemblance or little of the abilities we all take for granted, I have found there is something inside me that has guided me through the whole process. I know totally that in this I can not talk for others but I feel I have seen it in others so maybe many of us feel this way. The step by step lose of my health, my mobility and my body have been equally stepped by a feeling of peace, acceptance and understanding, explaining that is harder than it sounds. If I had been told that I had to stay in the house for a week, lets say 15 years ago I would have been climbing the walls in a couple of days, pacing round the house staring out the windows and looking for an escape route. Yes I was a normal human easily aggravated and determined to have my life my way. My pain tolerance was no different from others and having a tooth ache, would have sent me running to a dentist, seeking relief. I wasn’t a quick tempered person so that hasn’t changed much, but I was easily frustrated if I couldn’t do something, as I was used to succeeding at most things I tried, failure to me wasn’t an option. So I was a normal standard human, so yes if the rug had been pulled out from under me as that point and I had woken to find my life as it is now, I am 100% sure I wouldn’t have been able to cope, I would have been angry and unable to deal with the pain and totally unaccepting of sitting here day in day out with no escape, but that wasn’t what happened.

The process has been slow and has taken me gently to where I am now, everyday has been a slow step, not seen by others. Everyday I have changed just a little more and I have adjusted, I have learned. Adam like any carer can’t see those tiny changes, those tiny steps that allow me to continue to the next one, after the next one. To someone outside my body they would still be seeing themselves taking a huge crash to where I am now. I never took that huge crash, the biggest was the days I heard the words but by the point of my diagnosis I already had started the path of adjusting. When you as a viewer hear the diagnosis you feel a pain that I never did, as inside I already knew, I already had made adjustments and changes.

As time moved on yes you as a carer watch the pain and the difficulties, but you don’t see the strange things that the human brain dose, you don’t see the gift that it gives to someone who has to live it. Where it starts or how it happens I am not sure but there is a peace that starts to grow, I didn’t go looking for it, it appeared by itself. It is almost as though we have an alternative setting that kicks in and it carries you through the pain, gives you the escape route of sleep, removes the hard edges of everything by removing them and locking your memory to forget. Pain is something you handle when it happens and then you move on, quickly forgetting the last bout and strangely not fearing the fact it will all happen again. Frustrations have become short lived and there again you learn to find other ways. As time has gone on there is a magical change, one that changes us inside, one that allows us to accept each new thing as it comes, but I know it is hard for others to understand how this can be the case, but it is. I am at peace in a way I have never known before and I have seen that in many elderly people and others who like me have a chronic illness. Yes there are the bad day, the horrid days, the times when suddenly it all explodes and the world feels like it is out of control, but every time it happens the peace returns.

I know it is hard to watch someone you love struggling day after day, but look in there eyes when they are sat still, do you see anguish, do you see pain all the time, no. Take away the difficult short spells each day, the spells when the spasms stop me in pain, take away the difficulties of walking to the kitchen or back, the exhaustion and the confusion, over all of it only part of my day, the rest, the rest is peaceful, the rest is still very much living and very much worth having. I truly believe it is harder to watch all those things than they are to live, trust me when I say that the over riding emotions that life has given me is one of peace and happiness, the other things well they are the difficulties of life, just in a different more personal way.

As I said at the start I can’t talk for everyone but I am sure you have seen what I have written here in others because I have and I really do believe it is all part of being ill that we find an alternative joy to life and a peace that until you feel it is hard to understand.

Peace is returning

Last night when I went to bed I was really hoping that I would wake at least at the same level as I did yesterday, I’m glad to say I did. Although it really seems to be just my feet that are improving, when I woke I felt brighter than I have done for a while, that to me means more than the decrease in the pain. I have lived with pain that long that I find I can get on with things to a point but when you are pulled down by it everything is a struggle, that small improvement means a lot! This morning is the first one for a while were I have sat here for 3 hours without a single tear insight. I haven’t been crying my eyes out it has just been a case of from nowhere a tear or to have appeared and at worst it has been my eyes filling once then clearing, but those tears spoke loudly to me. Although I have problems holding emotions in check they don’t normally run a muck when I am on my own, they are normally triggered by others as Adam knows all to well, but for me to be sitting in tears with nothing but me to trigger them, just wasn’t right.

I know things are still bad but I also now know that I am back in control of how I feel about it all and that is so important, probably more important than getting rid of the symptoms. When you can’t see past where you are and see nothing but a downwards slope it is really tough to handle, I accepted long ago what lies a head of me but rightly or wrongly I had a vision of it being a slow gentle slope, not falling off cliffs all the time. Yes I am in a flare and it isn’t over, but having that tiny improvement makes me feel that the free fall aspect has if not stopped at least slowed and it has given me back enough to allow me to be comfortable with where I am just now.

I’m not sure how to explain the feeling as it isn’t something I ever felt before I had MS but the closest I can get to it was when I had ‘Glandular Fever’. If you have had it, you will know that it is an illness that also drains you and leaves you wondering if it is ever going to be over. I have a memory of being in bed for weeks, with no strength and no energy, just sleeping and sleeping. My mother said I rarely woke for the best part of a week and I still remember when I did get up eventually, that just going to the toilet and back left me zonked. I was only about 11 but I was so scared that I was never going to get better, that my body was never going to stop hurting and that I was never going to be able to go back to school. The last one was the only high point in it, but that physical drain also drained me mentally, I didn’t have the strength to hold a conversation or to be part of the world. Then like now it is that last bit that is the worst of all, the fear that you are loosing the world. I do sometimes wonder if that long term illness was a training ground if you like, I was ill for the best part of 2 months and I wasn’t allowed when I went back to school to take part in anything energetic for another 3 months. I learned then that you might fear you are dieing and that life is never going to be the same if you do live, but the truth is, life goes on and it might not be the same but it isn’t that bad either.

Being out of control and lost to the world in my head is more debilitating than the physical restrictions, loose the battle in your mind and you have lost everything, win the battle in your mind and the physical doesn’t matter so much. I am in no less pain really when I look at the all over levels but I am winning in my head and that changes everything. My world is becoming peaceful again.

Finding the path to content.

There are days when the world seems a bigger and brighter place. No I’m not trying to be sweet or cutesy, but those days when for no reason there is a general good feeling about the new day. Being ill doesn’t mean you have to be depressed and or depressive. I can see how some people get drawn down and find themselves drowning in pain, grief and self pity, I am not saying any of that in a nasty way, just as a fact. I like all others, went through spells of all those feelings before I found my own understanding of my illness. I really think it is unfortunate that there is no way of stopping people from reading everything they can about what they believe their illness is until you have a full diagnosis, naturally we all would have questions, but all that is achieved by reading, is panic and fear. Once you have a name and a basic understanding from the doctors, then is the time to start learning, you can them find the facts without mentally adding in thing that are not relevant.

I am not sure when my attitude changed towards having MS and accepting it, acceptance is vital, until I accepted what I had, and what was ahead I couldn’t move forward with the rest of my life. I think that acceptance started when I gave in and started using my wheelchair. When sat in it there was no way of denying I was ill to myself or any that saw me. That along with the report from the psychiatrist that there was clear cognitive problems and damage to my frontal lobe, pushed me to start find the way through it all. Working with my MS rather than against it, I suddenly found that it actually wasn’t the end of life and I just had to put in the effort needed to plan out how to deal with what I couldn’t now escape.

I know it sounds odd to others but I have to say becoming housebound in a way was a blessing. Without the pressure and stress of the outside world I found peace, a peace I didn’t realise I needed. The space, calmness and quite, has brought out a less stressed and nicer person, without other people pushing and demanding things of me, I can actually be me. To anyone reading this I would actual recommend that if they have holiday time available to take two weeks, to just stay at home, I do mean at home no shopping, going to friends, just stay at home. It is more relaxing than any holiday abroad or anywhere else. Tell everyone you are abroad, so there are no phone calls or internet contact, make your home a retreat and relax.

I don’t like the word content, as that sounds to simple and wishy-washy but there isn’t another word for it. Today the world looks a brighter place, because I am content.