It comes to us all

I knew the second that I heard his voice, that what I was about to hear wasn’t going to be good news. In fact, the last time I heard from him was back in April 2014, but you can’t mistake my little brother, he’s the only one of us with an Aberdonian accent. We’re not exactly a close family and the contact between us has been sporadic over the past 30 odd years. That didn’t stop it hurting when I heard the words I knew were coming. “Mums dead”.

It doesn’t matter how much bad feeling, pain or even time has passed since you last saw them, the death of a parent hurts. It was just the same when my brother phoned me in 2012 to convey a similar message about my Father and our relationship, had been a thousand times worse, than the one I had with my Mother. For both of them, the tears flowed from the second the words were spoken and the feeling of loss of something I had never really felt I had had, was momentarily overwhelming. Those ties, no matter how badly damaged, are always there, and it appears they will always have a power over us, that we thought no longer existed until they are severed in that most final of ways. Everything else in the world is exactly the same as it was 10 minutes before, all that has changed was the speaking to two little words, “Mums dead”.

He called me just after lunchtime on Sunday to let me know, as he knew he was the only one of my three siblings who would even think to bother. She died in the early hours, just after he had left her to go home to get a few hours sleep. The staff of the home said they were sure she would still be there for a while longer, but she did what she has always done, broke someones heart and left them feeling guilty, at least it’s the last time she can possibly do that one. I did what I could to try and reassure him that that wasn’t his fault and she hadn’t been alone as my sister had been sat with her at the end, but his guilt was so clear in his voice, and I felt useless.

From what he told me, it had been a long time coming. I already knew that she hadn’t recovered from the accident she had three years ago when she broke her hip. She had never walked again and had to be placed in a home. That was why I spoke to him in 2014, to try and find out where she was, but that call led to my writing a final letter to her. My mother was the most judgemental person I have ever known. She didn’t even come to our wedding because of the one small fact that Adam is 17 years younger than me, and believe me, that is one of the smaller things she has done to me throughout my life. In my letter, I laid out how she had treated me over the years and this game of not telling me what had happened to her, or where she even was, in the previous six months, had been for me the final straw. For the sake of my own health, I was severing all ties. So I had heard nothing. I didn’t know that last year she was diagnosed with Parkinson’s and by the time she died, she didn’t know who anyone was, or why they were there, so I’m sure she never once missed the fact that I wasn’t there either.

Clearly, there is no way that I can attend the funeral. Not just because I’m housebound, but we live a couple of hundred miles apart, a distance that has served several purposes over the years. Self-preservation isn’t a recent phenomenon, it’s a card I have been playing ever since I was 13. It doesn’t matter how far I ran, somehow, she always pulled me back and made me fell like the villain of the piece. That umbilical cord of life holds so much sway over us, somehow, we can’t wriggle free of it, no matter how old we are, they are always our mothers.

I knew after how I felt when my father died, that I would also feel something when she left, I just didn’t expect to feel so much. I’m not wailing all the time, don’t get me wrong, I’m not deep in grief, but that loss is there, held inside me, calmly changing the history of our lives. Death does that, it changes things, things that were written in stone, suddenly appear to be written in nothing more solid than soap.

What I didn’t expect, was for all of this to have taken a strange effect on my health. I don’t know why, but every time I stand to move to my chair, I seem to be more unsteady than usual. I don’t feel quite here, more tired than usual and somewhat sedate if that makes sense. Probably best just to say that I don’t feel totally myself, not really ill, just not quite right, but I will be.

As I said, I don’t know when the funeral will be or what all the details are, other than she will be buried with her parents, somewhere I know she would want to be. Even though I won’t be there, somehow it doesn’t feel complete until that final step is taken, so I hope it is soon.

Between now and then, I have this weekend to look forward to. My daughter is coming to Glasgow to spend a few days with us. It has been planned for a while and somehow seems to have a different importance to it now. Teressa barely remembers her, just the usual memories of early childhood, as she hasn’t seen her since I left her Dad, some 30 years ago now. I somehow have this need to have her close to me, even more than I did before, maybe, it’s something to do with that thread that runs through us when we become mothers.


Please read my post from 2 years ago today – 24/02/2015 – Rambling inside

I am so far behind this morning that I have given up any hope of catching up, I am just going to have to go at the pace that today will allow. Things started out alright and Adam, before he went to work sorted out the moving of the furniture in the living room, ready for the return of our newly…..

Return to Neurology

“Frankly, I’m surprised to see you even sat here in front of me, awake at all.” Those were the first words that my neurologist said to me, once he had read my referral letter and checked the list of drugs I am on. My GP had asked him to see me following the development of what I suppose appear as sleep issues. There had been no change in my drugs or anything else, but I was finding myself waking up or should I say not, sat on the edge of my bed during the night. I can never remember actually going through the process of moving to the edge of the bed or sitting up, but there I am, unable to wake up enough to either lie down again or get up. My head will drop forwards and I wake, but just long enough to raise my head and instantly fall asleep again. This can happen over and over until I do eventually wake. On its own, I wouldn’t have really been bothered, but then I started falling asleep in my wheelchair while trying to get to, or back from the toilet. Again, I am unaware of falling asleep, just waking up or being woken by Adam sometime later. There had been no change in my medication when this all started, nothing had changed at all, not drugs, routine, diet nothing at all, just this sudden odd behaviour. It was closely followed by my starting to wet the bed, and the dip in my memory and all the other things that I have written about over the last few months.

Both Adam and I smiled and half laughed following his comment, as it has been one of the things that we have both been astounded by over the years. It doesn’t matter what drug they throw at me, or what the side effects are supposed to be, I never have the slightest issue with any of them. Yes, I should be asleep 24/7, and I should be totally unable to even think, but here I am still managing to live my life. Yes, I have a list of growing issues, but as nothing else has changed, the drugs in themselves, seemed to be irrelevant to the issues I now have. When I stressed this to him, he smiled and said: “Well, you do have to take in the factor of your age, as you get older, nothing works as it once did. Even how we react to medication changes.” I didn’t at the time have an answer for that comment, nor did I have a way of questioning, but it didn’t sit right, after all, I’m 56, not 96.

We discussed how the drugs I take are working for me and what relief I find or don’t find in them. I went over the different sorts of pain I have, and when I take my booster doses of morphine. He did seem a bit surprised at the fact that I don’t take them ever day or even every week, I think he thought that that would be the answer he was looking for. I guess all doctors look for the simple answer, but if it had been that straightforward, I wouldn’t have be sitting there as my GP would have spotted it. He wasn’t giving in totally on my drug regime, he wasn’t too happy about my being on both Gabapentin and Pregabalin. The latter had been added just about six weeks ago to try and counter problems I was having with nerve pain. As it is a drug that has to build up in your system, I couldn’t be sure if my nerves had simply shut up, or the drug was doing it’s thing. So, I wasn’t at all bothered about taking it out of my drug list, especially as he wants to replace it with a new drug, that is proving to have a good affect on that sort of pain. Sorry, I can’t remember it’s name right now, when I know, I will let you know too.

I proved over and over that my brain isn’t working the way it once did. Adam spent about as much time talking as I did, as I was frequently totally lost and unable to answer his questions. He isn’t just leaving it at changing one drug though. I am to go for an MRI, in fact two. A normal one, followed by one done with a contrast dye. As it’s now nearly 16 years since I had my last one, I have to admit that I am really interested to hear what the changes have been over that time and where the latest lesions are, as I have a few theories of my own as to what is going on. On top of that, he is sending me back to rehab. I really wish they would call it something else as it makes me feel like a drug addict or drunk. What rehab will do is to assess me and see if there is anything that they can suggest that will make my life easier. Once again, he warned that they might want me to come into hospital for a couple of days, something that I am even less happy about now, than I was the last time he suggested it 8 years ago. I live in such set routine, one that the hospital will never be able to accommodate and I know without a second thought, that I would find the whole experience destressing, from entry to being sent home again. The biggest problem though is I won’t have Adam with me. As I showed even in the short time we were at the hospital this time, I don’t remember things, so if they ask me any questions, without Adam, they will probably be given the wrong answer, or no answer at all. But I’m not going to worry about that one right now.

I spoke to my GP this morning, as he called to say that he had the letter from the consultant about the change in my drugs. I told him that it had been implied that my age may well be playing a part with what has been happening to me recently. To my total joy, he laughed. Just as I thought, he reassured me, that I’m not that old. Although both I and my GP think this is probably not an issue that I am dealing with yet, it isn’t actually a totally stupid consideration. As we age, we do actually become more likely to suffer from side effects, even from drugs that we have been taking for years. These side effects usually slowly increase, not in sudden changes like the ones I’ve been going through over the last six months. Plus, to date, I can’t think of a single medication that I have actually suffered side effects from. I’m a great believer in the don’t read and it won’t happen school of thought. I’ve never read those horrid lists and I’ve never once had the slightest feeling that anything odd is happening to me. So hopefully, three months from now, scans and tests done, we will know what has been, and is happening to me.


Please read my blog from 2 years ago today – 17/02/2015 – Ignoring my disability

I started peeing for Britain yesterday evening, I had noticed over the last few days that I haven’t really been going to the loo that much, but I have been so wound up about the other end, that I didn’t put that much thought into it. Adam had taken an early shower and just after he stepped into it, I knew that I needed

Avoiding the gaps

I used to find this so easy, I would just sit down here and start to write. The words would flow and I never felt as though I was even thinking, it was a flow of words from where I had little idea, they were just there, they were always there. In the past week, I have sat here three times and tried to write and on each occasion, there has been either nothing or just a rant, about the building work going on downstairs. As much as that has dominated my life for the past three weeks, writing about it wouldn’t really supply anyone with something of interest to read. It wasn’t until yesterday, that I started to understand why I am suddenly finding all of this so hard.

I know that I have often written about the issues that I have had over the years with both my memory and the problems that it causes when I try to talk. So far, I have been able to think with amazing clarity, my problem has been when that thought has to be turned into either action or spoken words. Millions of trips into rooms with no remembered reason for even going there, and even more hours filled with stutters or silences, when words totally vanished on me. Yet, I could both write and think with a fluidity that never let me down. How? I never managed to work that one out fully, it just was, and I so loved that it was. It allowed me an escape into normality, the way I could see existed for others. It appears that that has come, or is coming to an end. I can no longer even think clearly, almost all my thoughts are now stuttered and paused with gaps where I can’t find the next word. Even that narrative that we all have going on in our heads, has become like any other conversation.

For a long time, I thought the reason for the difference was that I wasn’t under any pressure when writing or just thinking to myself. I didn’t have to be understood or to think quickly as we all are when talking to another. When writing, there was no one there at that second who would read my words, nor was there someone inside my head to see what was going on there. Yet now, even when in that state of no pressure, I keep falling into a muddled spiral that gets me absolutely nowhere. It hasn’t stopped me trying, but trying is never enough, we all aim to succeed and when we don’t, well the pressure suddenly appears, all applied by ourselves. The more it went wrong, the worse it got, until I found myself with no memory of what I set out to write about in the first place.

It took me a while to work out why I could manage to write about the builders with a greater ease than anything else. It was simple, I could hear little else other than them, and their constant noise was like a dictation machine, feeding the words to my fingers. With any other subject, there were those nagging silences, the gaps that required me to reread, rethink and try again, just as I am now. It doesn’t seem to matter how rested I am, how relaxed or how silent the monsters in the flat below are, my brain just isn’t working the way it did, just a few months ago. The only time I am free is when I’m asleep and trust me, I am also getting far more of that than I ever did before. In fact, even on the days when I have my alarm set for 10 am, I switch off the alarm and struggle to get up, often drifting back to sleep. No one needs more than 13 hours sleep a day, no one except me.

On the good side, I, at last, have an appointment with my neurologist, I will see him on the 14th of this month. On the bad side, that means another trip out in an ambulance and all that brings with it. My health has changed so much since I have last seen him, well it would over ten years,  but the worst of the changes have taken place in the last 18 months. Because I keep myself constantly up to date with what is happening in the MS world, I have a horrid feeling that he will not be able to help in any way. At the best, he will send me for updated tests and possibly change or add to some of my meds. At the worst, he will do his normal, smile and ask me if I would like to come back and see him in a year. To be honest, I quite simply want to put my mind at rest over some of the things that have become part of my life, like the issues I now have with actually being awake.

Also on the good side, I am totally in love with my Charcoal toothbrush and the Charcoal tooth powder. The difference that the brush made was clear to me within a couple of days. My whole mouth feels cleaner and teeth feel squeaky clean at all times just as though I am seeing a hygienist every day. When the powder arrived a week later, I started using it after lunch every day. It’s not quite a week yet that I have been using it, but I can clearly see a difference already. Even stains that have been there for years are slowly disappearing and my teeth are without a doubt, whiter. So if you haven’t yet, go and buy both, they are amazing.

I’m sorry, my brain has had more than enough for now. This has taken three hours of writing with two half hour breaks and one of over 13. If my brain doesn’t return, which is something I hope it will do, I am going to have to find a new way of writing, as I don’t want to give this up. I see it as an important record of how this illness really affects me and I don’t care what happens, I’m going to keep it going.


Please read my blog from 2 years ago today – 09/02/2015 – It’s time for change

I woke last night once again with intense pain in my back, this time it was so bad that I had to reach for my booster pills, it’s the first time that back pain has made me do such a thing. I know that it is stupid and that they were prescribed for dealing with pain, but I have them linked so tightly to my PRMS and COPD…..