Sunshine for Adam

I had the most bizarre and wonderful conversation with Adam last night. It was 8 pm and I had joined him in the kitchen while he sorted out my medications for me and I sat using my inhaler. As I was sorting out the nebulizer I took what was the first opportunity away from the noise of the TV to tell him my discoveries of yesterday. In the past when I have suggested that it might be time to find out what help social services might offer, he has always taken it as some sort of slight on his ability to do everything that I no longer can, but I knew that I had to try again. This time instead of going over what help I feel we could do with, I put it in a totally different way. I explained that they would do an assessment, not dissimilar to the one we had the other week with the PIP assessor, then they would tell us what help we could be offered. At that point he stopped me, somehow he thought that that was part of the PIP assessment. He didn’t realise that they were totally separate and that getting one, doesn’t mean you can’t get the other, nor does it affect the other in any way what so ever. With that error corrected, I discovered another one, that I again didn’t even know existed, and the stress that it was and has been causing him for years.

Adam believed that if my health suddenly dipped and I needed someone here to look after me, he would instantly have to stop working. He saw his future as nothing other than having to care for me 24/7, 365 days a year. He literally crumpled onto the kitchen counter, as I told him that I could have someone here, paid for by the Scottish Government to shower me, make my meals and anything else I needed as far as personal care, unfortunately not the housework, but anything that went under the brackets of care, when he wasn’t here, and even when he was. It was like seeing a weight being lifted off him. He stood there, head down on his hands, slowly shaking his head, and with each shake, the pressure that he has been living with, lifted. The assessment would determine how much per week they would give us, up to I think it said was a total of £170 per week. The money can be either paid to us, so we can employ whoever we want, or, they will arrange the care and make the payments. He asked me several times if I was sure, and then just stood there looking at me and going over what he had thought again. I never realised just what was going around in his head, or that he hadn’t even thought of checking it out online. As you know, I have been searching for whatever it was that was pushing him down, for ages now, I think at last that I have found it. Every single day for god knows how long, he has been waiting for my health to attack me, and for him to suddenly be locked in this house, just as I am.

It was one of those conversations where his relief was so clear that he suddenly didn’t seem to want to stop talking. He started talking about how he knew some retired nurses who now took on this sort of care, and how he was sure that we would be able to find those who understand the fear that runs uncontrollably through my head. It was almost as though my putting his fears to rest, meant that he was suddenly free and was seeing possibilities he hadn’t even dreamt of. I hate the idea that he felt trapped with what were unfounded fears for so long. Releasing them was like an added shaft of sunshine had entered our home.

I knew that his fears lifted a little when I decided that my walking days were over. That day that I asked him to bring my wheelchair out of the cupboard and give it a clean, so I could use it daily in the house, I saw things change, even more so, when I said I was going to have grab rails fitted in the bathroom. I’m not an idiot, yes, I knew that from the day I first fell badly, that he had feared I would hurt myself so badly that I would land up in the hospital. I knew that he was on the side of the OT and wanted me to put all the crystal that our house is filled with away, he had this vision of my falling onto one of my displays and shredding myself on the glass. I knew that the day I fell and found that I could no longer get up, that it triggered the image of his Grandmother, who he found after 36 hours on the floor of her house. So yes, I knew his fears, what I didn’t know, was that the wheelchair and grab rails hadn’t removed it, he still fears I will fall. It doesn’t matter what changes I make, he lives his life in fear of what will happen to me next. He almost split with the smile when I mentioned someone else cooking my lunch, he knows that at times, despite all the burns and my saying no more, sometimes I do. I doubt that even if I had someone here when he wasn’t, he would still worry, that is him and I’ll never change that, but hopefully, I think I put just a dent in his fears.

So today, well today, I am going to look deeper and see if I can find the details of who we need to talk to, who can help set up this assessment. What we are hoping for just now, is exactly what I said here back in January, to get all the paperwork out of the way and to take the help I need right now, but more than that, to have the opening so when things do progress, we know just who to call. As I said to Adam last night, my health has dipped dramatically in the past six months, if it continues this way, in six months time, I will probably need not just what I can think of now, but more.

I so wish that I had known that Adam was carrying all that around with him. To be honest, that was the last thing that I would have thought of. I was so sure that he was just finding the things he has to deal with now, not the future that was the problem. At first, I couldn’t understand why he hadn’t spoken to me, but when I thought about it, he quite honestly didn’t think there were any other options or any possible alternatives. I get the impression that he felt that as he wasn’t earning masses of money, that meant he couldn’t pay someone to care for me, so logically, it could only be him. I now understand that bit more of his world.

It doesn’t matter how close you are, or how much you love each other, none of us ever talk about those things we believe can’t be changed. Why would you? All the talking in the world won’t make you a foot taller, or three sizes smaller in dress size, so why should it change anything else that is unchangeable. When we perceive that something is what it is, we tell ourselves we just have to live with it. If this has shown me anything, whatever it is we fear, we all really should talk about it, regardless how stupid it seems. I don’t know how long Adam has been living with this extra stress, I would guess that it is more likely to be years rather than months. At least we have made a start, we have the source and I just hope, that we can now, also obtain the answers.


Please read my blog from 2 years ago today – 13/05/2014 – Quack quack

A few weeks ago, someone, I knew from twitter asked if I would be interested in their own personal work they were doing on curing different illnesses, it is usually the type of question that I would straight away thank them for thinking of me, but no thank you. Why I said that I would be interested in reading their suggestions I don’t know, but I gave them one of my email addresses and waited to see what arrived. I had made them a promise not to discuss the details and as I don’t break promises I won’t be giving you the details here or anywhere else, but I felt I had to write something about it as I found myself just a little worried not by what they suggested……

Abandoned by our friends?

Sometimes, it just feels like I have more to do in a day than my body has the energy to do, or the time available to fit it all in. Yesterday was one of those days. The day before a hospital visit always feels that way. I know that the only person putting any pressure on me is me, but I simply can’t help it. It appears that, that, work ethic, no matter what, never dies. I know it is nothing more than a feeling, but if I don’t manage to create the illusion that I am sat here as normal, well, then I have failed. I know it’s stupid, but it does also have a real reason behind it. It actually has its roots set in a single day three years ago. Just like today, I had quite simply gone to the hospital for an appointment, but I didn’t set anything up in advance. To the outside world, it appeared I had just vanished off the face of the social media world, and some people panicked. By the time I got home again, I had tweets, comments attached to my blog, and on my now defunct Facebook page, from people showing unbelievable levels of concern. I had been missing for a handful of hours, I hadn’t died, but you might have begun to wonder if you had read them all. From that day on, I have made a point of creating the facade of normality, regardless what is going on. Don’t get me wrong, I was extremely touched, but I felt so guilty for having worried people in that way, that I swore I would never do it again. So yesterday turned into a day of trying to do two days work, in one, never a great idea really, but for once I think, I got away with it.

One of the joys of my PRMS. is that it likes to play games. You can never say that this or that is going to be a problem. Any more than I can say that going to the hospital today will wipe me out for days, for the week, or not at all. If it’s feeling really sneaky, I might be fine for the next 24 hrs, then suddenly, I will feel flattened. When it first became ultra active 14 years ago, I didn’t have a clue what was going on. I planned my life with the greatest of care, expecting like anyone would, that if something was going to be too much for me, I would know at the time. It actually took me a year to understand, that planning was of no value, what, so, ever. It wasn’t like anything I had ever had to deal with, as the one thing it didn’t contain, was any form of logic. I had quickly discovered that energy couldn’t be banked, so the idea of taking it easy, because I wanted to do something later, or the next day, didn’t work at all. At one point, I actually kept a spreadsheet showing how much energy different things took out of me, and what my physical reaction to each was. I was desperately trying to find a pattern, something that would make some sort of sense. There wasn’t any. It is really hard when you are used to leading an active life, outside of work, to suddenly find that there was literally, no point in even trying. Why waste your time putting on your makeup and getting ready to go out, just to find as you reached the front door, that you couldn’t go any further? I lost count of the number of times I told someone I would meet them later, to find later, didn’t exist, well for me at least. By the time, I was in year 3 post diagnosis, I had stopped saying yes to invitations, only ever saying, “Maybe”, by the end of year 4, the invitations stopped as well.

I have heard so many people saying, that their friends disappeared and that it just proved that they weren’t real friends at all. I personally, don’t really believe that. I have written several posts with parts of my reasoning behind it when it comes to our social friends, but I don’t think I have ever written about our work friends. I think the post about social friends were somewhere in my first year of writing, but that is, only think. I believe that much of our loss of work friends has to do with just the way people live their lives, as it is with social friends. But I also think there is one factor, that most of us totally miss and it’s ourselves. If you think back to those days, those times when you were face to face with someone in the workplace asking you, to join them for a drink that evening. Now think closely about your body language, your voice, and your face, you will find several clues. Something none of us deal well with is embarrassment. When you know; that the chance of you being able to join them; is down to your health, well, we all feel somewhat guilty and embarrassed. Yet again, your not in control, and you are more than likely going to have to let them down, by not being there. The second that your brain works out that you are being invited somewhere, that embarrassed, and even guilty feeling, starts to show on your face. The person who is asking you to be there picks up on it, and they start to feel bad for asking you. They are in that horrid moment when even the best-preplanned words, start to sound wrong, or pitying, and they don’t really know how to change their words, or how to get out of the whole situation. You are feeling just as bad. It is no wonder that they will think twice about the next time of asking you to be there. Add into that, the fact, that the more people you say maybe, or no to, the less they will ask. They weren’t running away from you, they were running away from feeling awkward and embarrassed. Put the shoe on the other foot and be totally honest, you would have more than likely done exactly the same thing.

The first people who started to avoid us, where our acquaintances, those who didn’t really know us well enough, to know, if being blunt, or hedging around the obvious, was the right or wrong thing to do. Slowly one by one their invitations started to dry up. The ones who kept asking, always put into their invitation, something along the lines of, “I fully understand if you aren’t up to it, I just wanted you to know that you are more than welcome to join us if you feel up to it”. The air of awkwardness remained, especially for us. Unless you were a first class actress, that always showed and our embarrassment, out shown our appreciation of still being included. For me to begin with, somehow, I was always left with the feeling that I was letting them down. Worse still, that they might think that I was using my health, as an excuse. Even worse, that the truth was, I just didn’t want to be there, with them. I know now, that because of that, that I probably over did my thanks and my explanation of why I might not, or most likely wouldn’t be there. Even as time went on, my thanks and rejections, still showed that I was not fully at ease doing so. It’s just human nature that the more people see this reaction, that they are going to try and find a way of not making you feel that way, there is only one way, not to ask you in the first place. Add in, a simple fact, that the more you don’t go to parties, nights out, or company dinners, the lease likely that they will even bother to ask you. Work friends and acquaintances, don’t leave us, we leave each other.

None of us are taught how to deal with the illness of others. Our work colleges are probably the people outside of our partners who see us the most. They have watched us over the years getting iller and iller. They have seen us in every state that our health can produce. In my case; I had gone from a bright, person who moved swiftly; never missed an opportunity to attend anything that sounded like fun; to a person who was painfully thin; frail looking; in a wheelchair; with a gastric nasal tube, permanently over the ash white skin; that was on the few days that I made it into the office, as I worked mainly from home. Over 10 years, I had diminished in every way possible. No one asked me to attend anything in the final 4 years, partly because the final 3, I was housebound. I didn’t lose my work friends because they didn’t care or didn’t know how to handle my health, they had seen everything possible, there was nothing they hadn’t been involved in, in some way or other. I lost my work friends because my health removed me from the situations where as people we bond, those social events where we are people, not the manager, or staff member. We don’t bond at work, we bond when we’re social, if that is removed, so are those friendships. Just like any other job you have ever had in the past, once you don’t work there anymore, once you and they have moved on, those people we counted as friends, are gone, we and they, become part of the past. Be honest, how many people did you stay friends with from your very first job, or you second, or third, and so on. That is the way it always works; for us this time it’s more noticeable; we haven’t moved on to another job; we aren’t in a place where those relationships are replaced; we’ve moved on to another world; one where we are alone, so we feel it far more.

It is all too easy to say our “Our friends don’t want to know me anymore because we’re ill”. Our work friends don’t think of us once we have left their family, as that’s the way work families work. Your seat in the office isn’t empty, it has a new you in it. The person who sat there is gone, but the person who does that job, is sat in the same place, they always have. So don’t be hard on them, as it’s life, not them, not your health and definitely not you!

Please read my blog from 2 years ago today –  09/11/2013 – 1/6th lost to pain

I thought that yesterday was just going to be a simple day with nothing to report and in many ways it was, I did everything that I would normally do and even had a late afternoon shower, which…..

Dealing with buisness

Well this wasn’t the start to the day I had expected. I was woken at 6:10 by Adam doing his pig impressions and gave up trying to either shut him up or of any chance of getting back to sleep, so I got up and started my day. Adam eventually got up and headed of to work and I had my breakfast, so far so good, but then the phone rang and it was one of those horrid automated things, they all seem to have on specialty, confusing me! I knew from experience that as it was Barclays and they were asking about recent transactions that someone was trying to use my card, or at least they thought they were.

I know they do their best to make these systems easy to use and to understand, but I find that my brain goes into a spin, something that it shouldn’t as I was one of the people behind a system like that, who used to record the messages and set up the system to take a caller to the right person, or to simply leave a message of some sort. I more than understand how they work and what the processes are, but with questions that don’t actually make sense to me meant I had to open my statement, making things worse as I was trying to answer the questions on the phone and to log into my account, I had to hang up on the the phone it was just too much. I checked my account at my speed and called back, they were right someone was stealing money from my account. The took £1.60 on the first, £25.80 on the 3rd and according to the phone they were trying to take another £25.80 today. The whole thing was hysterical thinking about it, as the adviser who was trying to help me, had a really broad Asian accent and I was confused before I even tried to work out what he was saying. We got there and I now have a new card on it’s way to me. I am still confused though as I only use my card to make payments to ASDA, I use it as it has this fraud protection, that means to me that ASDA’s security is questionable, rather a surprise for a company that size.

What this morning has shown me is that dealing with companies once you have a problem with communication is really hard. For about 4 years in total I worked as a call center rep and not once was I ever given training with how to handle a call from someone with speech problems. Nor when I was a Operations Manager did I bring in any training for the staff to deal with it either. We all think we know how to talk and how to communicate with someone, but it is a different skill and this morning was proof that it isn’t a universal one. I made it clear to the man at the other end I was having problems understanding as he spoke so quickly, but as most do, he didn’t just slow down, he started to shout! I have noticed that all my life that people shout when someone can’t understand a word, or their accent or even just they way they are saying something, shouting makes no difference at all, it is comprehension not hearing that is the problem.

I actually think that it shouldn’t be something that is taught by business, it should be along with a million other things, be taught by parents and schools. How we react to people can make so much difference, I witnessed from my wheelchair days that people shouted at me then, strange I know as I never thought my ears where in my legs, but apparently they are. If someone was with my they spoke to them and not to me, and always looked at me in a pitying way as thought I had lost my brain along with my mobility. Well world here is a note for the margin of your page on people, disabled doesn’t mean stupid, just different.

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 than 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……

Life plus Drifting

There is snoring coming from the settee so therefore it is Saturday, lol. I sat here late last night, right through until 10 pm as I thought that sitting on the settee even with my added cushions where part of the problem with the pain in my spine, I wondered if it was possible that the harder higher seat might do less damage and allow more healing than the low soft settee, by using the past tense I know I have given away the result of that test, yet another broken straw. It seems as though I am having less and less success with my own attempts to fix things or maybe the it is just the pain getting to me a bit, but I am at more and more of a loss as to what to try next. I have again today just taken a couple of Ibuprofen as I tried them a couple of days ago and I think they helped a little. I keep trying as when I check on line the solution is to boost the meds by adding something simple, I don’t understand the chemistry behind it but it has to do with the drug combination, producing a higher pain relief, I have promised Adam that if I don’t have any significant relief by Monday, I will call the Doctor. I am you see quite sure that the pain from my pulled muscle in my back is healed, the pain I have now isn’t in the same place and is in reality the pelvic pain I have been struggling with for months now, just worse. I really expect him to say there isn’t anything he can do to help as he is so reluctant to up my meds and I am so reluctant to up them as well, but I can’t live like this for ever it is getting beyond silly.

I am not sure exactly how I am going to go about it but I have a hankering to do something different today, which with my vast array of things to do, comes down to spending most of the day playing computer games. I haven’t really played any for months so it might be some fun again. I have never been taken by the shoot-em-up games they just to be honest bore me but I do enjoy a good puzzle game, something that I have to think about and plan as I go along. I always thought that was why I enjoyed my work so much as all my days were basically spent working on big puzzles, then building software, which is another is another puzzle to be able to monitor and/or fix the situation. What wasn’t there there to keep an analytical, puzzle mad mind happy.

I have allowed my writing and twitter to take over much of my life lately and I am loving it but I think it will also do me good to take time out maybe every weekend to do something different. I suppose to be honest it has more to do with how much time I have more than anything, good days I have two to three hours to work on my book on a bad none. Everything in my life seems to be run by how my brain wants or doesn’t wants to work, so I have to accept that I have little control now over how well I manage anything on any given day. It is one of those things that has always made life with MS difficult as it is easy to make plans but impossible to know if you can actually carry them out. I am lucky with Adam on that point as he isn’t the type of person who likes to make set decisions about what is going to be done on this day or that, or even at what time, so my inability to stick to anything doesn’t bother him. I used to be the total opposite, I was totally the type of person who planned everything and got really wound up when or if it didn’t go totally to plan. I hated people being late for anything even by just a few minutes and I hated having to change anything I had planned. If someone had told me years ago that I would have learned to drift through not just one day but everyday, I would have told them they were mad, yet here I am drifting all the time and I don’t really care. I suspect that is one of the pluses of having brain damage, as it has removed that uptight to the rule side of me, which is a blessing, as otherwise I would be permanently wound up and in a state of frustration, now I just accept and get on with it. I was sure that like everything else in life, I would find a plus hiding in there somewhere.