It has been some time since I last made an addition to my blog and I apologise to any who have been fretting as to my well being. I assure you all that I am fine, I quite simply found myself suddenly not wanting to write. Every time that I tried, and believe me I did, nothing came out, there was nothing there. After 5 years of constant updates, not only did I have nothing to say, but I had this great desire to simply take a break, to not write, to do anything other than that one thing, so that’s exactly what I did. I never intended for one second for it to be as long as it has been, but what is it they say about best-laid plans?

The first couple of weeks went just as I thought they would. I found silly games to play online until I found one that pulled me in and suddenly I was addicted. Days passed with easy, so much ease that it was almost scary. I think it was around the start of week three when Adam suddenly had an accident that damaged his back severely. It wasn’t like he did anything that you would expect to cause such an injury, he simply stood up from sitting on the settee and that was it, he was in excruciating pain. He couldn’t stand, he couldn’t sit and he couldn’t walk without pain like he had never known before. Suddenly, he was in my world.

Like many out there, he thought he knew, especially as he had witnessed what has been happening to me, over the past 17 years, exactly what chronic pain was. As each day passed, the pain he was in was wearing him down but still his admiration for the way I cope grew, yet oddly, he was reluctant to take any of my advice. Just as I once had been, he was determined to work it all out for himself and I became more and more helpless just watching him struggle. Unlike me, Adam has this thing about not taking tablets. For as long as I have known him, it has been a battle just to get him to take an aspirin, convinced that it would do damage far worse than what it would cure. It was the middle of week three, and only because his doctor had prescribed them that he started to take high levels of ibuprofen and codeine, but only when the pain was at it’s worst.

Adam has been my carer for so long that finding myself having to care for him the best I could, was hard. Not the caring bit as I totally love him, but there is so little that someone can do from a wheelchair to aid another, especially someone who is finding it hard to walk. Yes, because of my electric chair I could do much of the running around in the house, but I was totally unable to support or aid even one of his steps where ever he had to take it, and the emotional support that he needed was draining. My energy levels aren’t great and when you have to repeat over and over again the same things you said just an hour ago, well I simply didn’t always have the patience he needed from me, and he needed a lot of it. I found those five weeks of holding him up, amazingly hard work. Not too surprisingly, there were a couple of points when I did snap, like the day through his tears he said: “What am I going to do if I can’t ever walk again?” I did kind of go through the roof on that one, but I think I was justified.

After weeks of physio and doctors prodding and checking, he is now fully mobile again, but the support is still going on as they discovered halfway through his recovery that he has high blood pressure and I do mean high!. He had been at work when he started to feel really ill and he phoned me to tell me what was going on. He’d only been back at work for about a week, but all I could do was tell him to speak to his boss, then come home. It was over an hour before he phoned me again. His boss had called one of the nurses to his office and she had taken his blood pressure. Straight away he was sent out to the main hospital in Glasgow for an ECG, why that couldn’t be done in the one he works in, I still don’t understand. By the time he got there, it had lowered, but was far from low enough.

We have been going from one medical disaster to another, mine being fitted around his as they occurred. As I said, don’t worry, I’m OK, for me, it was just all the normal stuff that makes up my life, but finding the time to relax or to rebuild the energy that I needed to get through each day, has been hard and sometimes impossible. At times I have been so tired that doing anything other than playing those banal games, has been totally beyond me. I have sat here hour after hour, connecting numbers, stacking different sized boxes, eating snakes and all those other free games that are out there. I have sat here quiet simply happy to let the hours tick by and looking forwards to when I could next just go to my bed and sleep. Because Adams health has generally been so good, I had forgotten what it was like trying to be me alongside being his carer. I know there are a lot of people out there who do this daily, handle their own health along with that of their partners, but it’s all new for me.

High blood pressure is a chronic condition that can be handled with ease by taking medication. Not something that Adam finds easy and has no intention of doing for the rest of his life. He knows that he has to lose weight, something he is doing well at, he is already over a stone down but upping his exercise levels isn’t going so well. I am finding it so hard not to nag him, as I know he doesn’t respond well to that, either mentally or with the level of his blood pressure. I can see now that he has probably had this problem in the background for a while as trust me, I can see when it flares. I know that if I could just get out there with him, go swimming with him or just on long walks, that it would be easier for him, but I’m trapped here in the house unable to support him any more than do. I am such and easy excuse for him to use, as doing any of those things that are good for him, would mean leaving me behind and once again alone and he doesn’t like that. Somehow we will work it out, we always do.

So now you know what has kept me away. What was supposed to be a short restful holiday, has been anything but, but I’m back and I’m happy to be here.

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…..

“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