Lost and in need

I did something this morning that I can only ever remember doing once before in my entire life. The alarm sounded and I turned it off, threw back the covers and went straight back to sleep. On the good side, the last time I did it, I went back to sleep and was 4 hours late for work. This time, Adam noticed that I wasn’t moving and woke me again. I haven’t worked for years, and I have nothing other than my routine, to say that I can’t go back to sleep. Yet, the second Adam said my name, there was that huge feeling of overwhelming guilt and panic. I think it is the fastest that I have moved in a long time. Somehow, I made one fluid movement from flat on my back to sitting on the edge of my bed. I think it was pure shock that kept my eyes open through the next five minutes, as I struggled with my clothing, whilst fighting the same exhaustion that has been with me for the last few mornings. I am not exaggerating over the fact that I have had to really fight to stay awake, and just as has been the case every other day, I also had to fight with my wheelchair. Despite having managed once more last night, to rise at around 4 am and travel right through the house, without banging into a single thing. Here I was three and a half hours later, once more, bumping off walls, doors and anything else in my way.

That dragging sleep, makes everything feel impossible. The whole process of keeping my bladder under control until I actually get my wheels through the bathroom door and around the edge of the shower cabinet has been more luck, than skill. Standing up, is a different subject, but the real battle comes seconds later. I have to convince that same bladder that was threatening me the whole way there, to actually do what it should, now that it’s in the correct place. When all you really want is sleep, there is a secondary danger in having to apply relaxation techniques, just to get your bladder to empty. Then, of course, once relaxed and empty, I have to do the opposite. I have discovered that first thing in the morning is never, the time to trust my bladder. With this intense wave of tiredness, I can’t trust it for even a second. Empty or not, it will somehow start dripping, over and over, the second I start to stand-up again. If that wasn’t bad enough, I still have to complete the remained of my blundering journey from bed to PC. There was no denying the relief that I felt this morning when I actually made it to the safety of this chair, one that doesn’t move. No matter how I have searched the parts of my memory, that are permitting me in, I honestly can’t find any stage where sleep has had such a tight hold over me. I have joked before in my life, about still being asleep long after I have gotten out of bed, but this isn’t a joke. I don’t think, I have been really awake, any day recently, much before an hour, or more, after the alarm.

On Friday evening not long after Adam came home from work, I had to leave the living room for something. Much to my annoyance, I managed to just touch the side tables by the door. I did so hard enough, that the crystal lamp made a slight rattle. I was so angry that I actually shouted out loud at myself. I had noted over the entirety of the week just over, that once I am awake, and as long as Adam wasn’t there, that I don’t even touch anything, not even lightly, that I wouldn’t have done, when I was still walking. But if he was in the house, anywhere in the house, it was almost a guarantee that I would make something rattle, or clump as my chair drags past it. I had come to the conclusion that it wasn’t a lack of skill, it was the fact that I became self-conscious. I started to overthink my actions, rather than just make them. From the instance, I shouted that out and got that pent-up frustration at myself, out and aired, I haven’t banged into a single thing. Two whole days, without crashing, rattling or smashing into a single thing. Without a doubt, if I hadn’t been willing to make that accurate put down of myself, that wouldn’t have happened. It is something that I have been very aware of all my life, if we are willing, to admit, to even those who hadn’t noticed, our own weaknesses, that they often then fade away. I don’t know why it works, but it does. Not only, am I sure that my home appreciates it, but it lead to a weekend where I felt, so much better, about a lot of totally unconnected things.

It is partially obvious as to why that is, simply because all my muscles have been far more relaxed. Just that one, small thing, led to my whole body feeling totally different whenever I was on the move. Clearly, not arriving at my final destination, either tense or angered by once more having a string of stupid accident, has meant that overall, I have been relaxed, for nearly the whole weekend. The knock on benefit has been huge. I couldn’t even compare the last two weekends with each other. Part of that was, yes, down to my losing it last Sunday evening, that clearly played its part. But, just not being tensed up physically, has been wonderful. It is amazing how you can be pent up and totally, unaware of it, until, you break it. I had known that I was spending more and more time, just even sitting here, trying to unknot myself. But, I wasn’t putting it all together, something I would have done years ago with ease. I don’t fully understand, why it is that I no longer have that ability to self-monitor and analyse the reasons, from the effects. It is a bit like having a growing mental blindness, where more and more instead of processing things, I either don’t see them at all, or I am having sudden flashes of light. All those normal steps of working out for ourselves what to do next, are missing. Like everything else that is happening to me, I can no longer trust myself to see the truth, or do what is needed. Just like Adam now has to tell me to physically do things, I almost feel as though I now need someone to point out to me, what I am mentally doing or not doing. It’s an odd one, but as I have been working through here in my posts recently, I know there is something missing, I’m just not seeing what, or what to do about it. I just wish that I could lift my skull off and let someone else look inside for what is going wrong, and why. Then tell me how I deal with what my brain is doing now.

I hope that makes sense. As I said, it’s a hard one, but I do know clearly, that things are going wrong in that side of my life, and it is disturbing me. It’s disturbing me, because, for some reason, I can’t find the answer. I’m lost.

Please read my blog from 2 years ago today – 12/10/2013 – Noticing the risk too late

Sometimes things sound so simple, too simple to be honest and that is when I find the danger usually starts. All I needed to do was to get a new pack of tablet out of the cupboard where I keep all my spare meds, from that pack….

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……

Strange understandings

My Pressure socks arrived at lunch time yesterday, which means that I have started the test to see if I can reduce further the pain in my legs. I have now for the past two days been ensuring that I take my blow up cushion with me so that I never sit on a normal chair of settee without it. This does seem to be making a small difference, I know at least my TV watching in the evening is less fidgety, I can’t stay absolutely still but I’m not shifting around every few seconds. I managed with a little twisting and getting myself into strange positions to put the socks on myself yesterday when they arrived. Reaching my feet is really hard and causes pain, it makes the normal position for putting socks on, not really possible. There were several attempts before they were over my toes and where I can inch them on from there, at times it feels as though nothing in my life is just easy, but well it’s my life the way it is. I haven’t had them long enough to know if they will make the pain less but with them on my legs again today so far the pain seem to have not really changed. The one great thing I noticed this morning was that my right foot looked for the first time in ages like my left foot, skinny and bony, the left is better as well but still a bit puffy. I suppose what I need to do is continue with both over next week and then assess the results.

I am in one of my easy to be distracted moods today I used to try to fight it now I have learned just to go with it. It is all part of the wonderful thing called MS, concentration sort of vanishes and my attention will drift off to other things. I tried again the other day to keep it in one place and doing what I wanted it to do. I opened this page on it’s own and enlarged the window to fill the screen, nothing to distract me, that was at least the idea, the result was very different. Nothing else to distract me on the screen but I now had the whole room to distract me instead, I started dusting the ornaments on my desk, fiddled with the desk lamp, cleaned my keyboard and anything else within reach. Fiddling with other web pages and reading emails is more productive and less tiring so I now have loads of windows open and I am writing a few words before having to come back here reread what I wrote and adding a bit more. As long as I stay here at my computer on days like this it at least isn’t dangerous, I’m not putting pans on the cooker and forgetting about them.

Days like this always have the is strange floaty feeling that comes with them, I know before I try to do anything that I am not going to get through it in one action. I kind of feel that I am here within my body, but my body isn’t quite mine, I am living here behind my eyes but here only. If I stop moving my body feels numb and it is as though I am only my nervous system, without the nerves sparking to make the movement they then become detached and float. I suppose to make sense of it, is to say it is like my body shuts down anything I am not using. I have rewritten this now three times, not just because I go of to other things but because I want it to make sense not just to you but to me. We all normally now where we are and what we are doing, we normally are aware of where our hands and our feet are not just because they are attached to us and they are where we put them, but messages travel back to our brains confirming their position. It feels as though those messages are gone unless I somehow stimulate them. So right now I know my feet are on the floor, I put them there, but I can’t actually feel them unless one of two things happen, I move a toe to cause a signal or there is pain. I am here behind my eyes and I feel nothing other than areas of pain all in their physical place but there is nothing in between, just numb blankness. I hope someone out there understand this, I have avoided trying to write it before as it sounds so odd in written words. It is a frequent feeling and seems to have been part of my life for a long time, but telling people that huge areas of your body have disappeared really does sound nuts, screwed up nerves do screwed up things and this is just another of them.

Chronic loneliness

There is one thing I don’t think I have really talked about that is something I think anyone with a chronic illness will be able to relate to. It the strange feeling of loneliness when it comes to my illness. I don’t mean I am lacking love and support, this is a different loneliness one that at times separates me from all those around me.

No matter how many experts I listen to, articles I read and support groups I had joined, no one has my illness as I have it. Medically true when it comes to all the array or autoimmune disease but it isn’t the medical definition that causes this, it is my own personal experience, both physically and emotionally. It very soon becomes clear once I was ill that I was alone, no doctor, carer, family or friend have the slightest understanding of what is actually happening to me. I can write here every detail and every feeling, but none of you will understand totally, because well, you are not me. It helps beyond any word I can think of having those that care, who listen, who try to understand, but when it comes to the silent hours, when pain is driving me mad and every silly symptom decides to make an appearance, I am ultimately alone, even if someone is holding onto me, there is a gulf of loneliness.

At this point I can hear the word depression circling in your minds. It’s not! Imagine that you have just fallen down some stairs, you are at the bottom of them and your family and friends are all there. At that moment not one of them, inducing yourself have the slightest idea what is happening to you. It becomes clear that you have broken your leg and banged your head, the broken leg might be clear to see but unless one of them had broken their leg in the past in exactly the same place, not one of them has the slightest understanding of the pain you are in. Even the one who has had a broken leg, actually won’t know the pain you are in, humans forget pain as time passes and we all have our own pain threshold. The Doctors will fix it and fill you full of painkillers but they don’t even know how this is effecting you. That leg has thrown you into a place where you are on your own. That bang on your head the one you are telling everyone is nothing, might be in the process of doing more damage than even you think it can. As the drugs dull the pain you want to sleep but no one will let you, everyone is telling you what to do and you just want to sleep. At that point you don’t understand and neither does anyone else, no one can see what is happening inside your skull, it is invisible, even to yourself. All you know is you feel bad and might by now getting confused by it all, are you getting the picture?

That loneliness is part fear, part a feeling of being locked into a position that I can’t escape from, part desperation of just wanting it all to stop, part the fact that no one can possibly really understand and if they can’t understand, they can’t really help. Chronic illness has locked me in a world that is totally mine, totally isolated because it is mine and mine alone. Those who try to reach into that world often find they get the reaction they least expected, it isn’t that I don’t want or need the help, the love and the contact, but when things are bad I am locked in a space that means I can’t reach back. Loneliness isn’t always what you think, loneliness can come from isolation and Chronic illness isolates like nothing else.

I ate well! I exercised! I became ill?

A second quite day is ahead if I can ever get Adam out of his bed, he is going out for the day as it is his Mums birthday, Adam and his sister and her girlfriend are all of on a cycling trip, an unusual way to spend your birthday but if it is what she want then it should be what she gets. I am a strong believer in that is what birthdays should be. I have already been through 3 time to tell him that he has to move but I am being ignored, well not totally there is a grunt from under the duvet which I am totally sure isn’t an awake grunt. If he would just get up he would see that it is actually a perfect day for their outing, the sun is shining in a beautiful clear sky, but it is cool with a light breeze.

Years ago I used to cycle a lot, it was my only transport other than my feet so when I was on my own I cycled. There was on problem that i found with a bike over just walking and that was because first I was forced to go by longer routes and second I couldn’t actually carry as much shopping. In reality it was always easier to walk, but I used it to go to work when I was on the day shift and also if I had forgotten something from the shops, well the nearest shop to the house, even for a pint of milk was 2 miles away. When I moved to Glasgow I got rid of my bike in the first week, it was totally useless, if you have ever tried cycling in a city, especially in the early 90’s when there were no cycle lanes and so on, you will understand why I ditched it.

I have often found it strange that so many people who actually exercised more than the average, are the ones who more often get ill. Walking and cycling were not my only exercise, again before I came to Glasgow I swam for at least an hour each day and when I did stop cycling and swimming I took up exercise at home, weights and so on and I also took up dancing for at least a couple of hours a day. The only thing I could say I did wrong was smoke, I had a healthy diet and drank either nothing or just one or so alcoholic drinks a week. I remember as well that when I joined the doctors about 15yrs ago, the practice I am still with, my cholesterol level was so low they repeated the test as they didn’t think it was right.

You only have to listen to the News or talk to any others that you meet on stays in or visits to hospital and you will hear similar stories, I find myself questioning more and more the point of staying fit and eating well. I have to say I have given up on both, I don’t eat a lot but I eat what I want, rather than what I should and I drink everyday, it boosts the meds at night without my feeling bad in the morning. My health is so bad and I know my prognosis, so I am going to enjoy what I have left, I can see no reason now, to do the right thing, as I did for most of my life. Ironically it was because I always felt ill, that pushed me into trying to be fit in the belief that if I ate well and exercised I would stop being ill all the time, my health just got worse.

I don’t know if there is any research into this or not but it seems as though there is a really high number of so called fit people, getting serious chronic illnesses, we might not have damaged hearts and be riddled with cancer, but we get other illnesses instead. I do feel a little conned, I did all the right things in the belief that I would have a longer healthier life, what I got is the opposite. I wouldn’t be surprised to find their is little if any research into the previous health of those with autoimmune illnesses prior to diagnosis, why? because of several things, one being the question I asked and pushed the Doctor for an answer to, that was how long did they think I had had this for. He had to admit the NHS had been getting it wrong for about 20yrs. No Doctor is going to want to admit that, I didn’t think of it at the time but I guess it could have been another one of those things that I could have sued them for, something I don’t think is right to do.

I suppose it is normal to want to know why, what went wrong and why me? Questions that I expect to never have the answer to and ones I am sure not to be alone in wanting answered. I don’t ever remember been asked questions about my physical fitness or what my diet was like. None of my history was asked for, nothing was investigated after the MRI and Lumber-puncture came back positive, as did every test they did over those three days, that was the end of any investigation ever done. I still get the feeling that doctors don’t want to talk about anything other than medications how I feel and how I am coping, don’t seem to have ever come into it. Am I alone in this or have you heard of, or gone through the same thing?