Summer time, sleeping time

Now full of wedding cake life is settling back into normality, the proof? Adam is snoring on the settee! lol I have to say that last night after they left I was so exhaustive, I sat sort of not really with it or with anything else either! being in that sort of limbo land is somewhere everyone knows well as it is the point we go through as we fall asleep, I seem to have learned how to go to that point even when I am sat talking or watching TV, to be honest I am three quarters of the way there at the minute. This is the exact feeling that puts me off raising my morphine right now, if I was on a higher dose I would be in my bed not caring about anything. With the clocks now taking us in to so called British Summer Time, we did have a shorter night than usual but I also slept earlier than normal so the blame doesn’t lie there at all, this is just the whipped out me.

I have being reading back over the last couple of months, something I don’t do that often as I don’t like being influenced by what I have said about anything in the past, but I really needed to check something, well it is a good record when it comes to symptoms. What I wanted to check was actually how much I was sleeping now compared to a few months ago, I had this feeling that I had written a lot about it and I have. Sleep has been very much a solid core of my life recently, something that is taking over the majority of my life. Although sleeping is an escape, I don’t want to sleep the rest of my life, I want to have time enough to live as well. Finding a life balance has always been one of those things that is really important to me, just as I don’t want to be dominated by pain and I take the medications to keep that pain at a livable level, I don’t want the hours I sleep to mean I have no time to be part of the world. How I can manage this one is going to be difficult as staying up and forcing myself not to sleep when I need it, isn’t really an option.

Several years ago my MS specialist put me on to Modafinil, it is really legalalised “Speed” but you don’t snort it, it’s in tablet form. Modafinil is used for the treatment of narcolepsy, at first I found it a great help, but as the months went on, well I think I quickly became used to it and I even manage to go to sleep and sleep for 3 hours, having taken my medication an hour before. They increased the dose and again it helped for a while, then I got used to it and I decided to stop taking it as I felt as though I was filling myself with more drugs that were just floating around my system for no reason. I was surprised when I did stop I felt absolutely no different than when I was taking it, it was almost as thought I wasn’t really absorbing it all. Just surprisingly there was no withdrawal symptoms either, I had expected something, but no. I have checked on line and it seems to be the only medication of that form used with MS, and I do remember asking at the time if there was another drug I could use, to which the answer was no.

I would be interested if anyone reading this has had similar problems and if you have had a positive result with an other drug or even routine that helped with managing the problem, I really don’t want to sleep any more than the 13 hours I already do. So please let me know!

Why sore

Apart from tiredness I have to say things aren’t to bad, mind you it could be covering everything else, I have found that happening before. It is almost like your body is so tired it can’t be bothered to ache at the same time, a form of laziness I applaud. To be honest I think it is more a case of being tired stops you from wanting to do anything else so you sit there not aggravating things, a similar but not quite so successful system to lying in bed totally motionless. I used to wonder why nurses were always having to turn people as when we sleep we move around, I have discovered that that is often not the case. A healthy pain free person will move about all night long, the messed up of hair and bedding being the proof, short of having a web cam watching. I can now straighten my hair, set the front in positions with hairspray just once, and it will remain straight and in place for several days, usually until it’s next wash day. the sheets equally seem to not be moved and only my top pillow is disturbed by my original get comfy session. I put it down to a combination of medications taking me into a deep sleep quickly and my body being scared of moving and causing pain that would wake me. I do have a pressure mattress without one I guess I would have more sore things than I have now. It is funny how we see things and just accept them as being one of the things that nurses do, but how it takes until you yourself are actually in that position that it all makes sense. It is strange why we never actually ask things like why can’t that person turn themselves over, instinctively as any other person does? We just go oh yes, pressure sores, nod as though we totally understand the whole subject and all it’s implication, and move on.

I am just waiting for Teressa and John to arrive, I don’t think they are going to be here for long but they asked if they could come and see us today. I guess we have a lot of stories to hear from the wedding. I just hope I am up to taking it in and being really part of the conversation, I am sort of floaty and not quite with it, even writing is an interesting combination of sudden blanks and figures that are totally unable to spell even when give the correct letter to press they are choosing their own. Dyslexic finger aside, I know my brain is somewhere else and refusing to come home and join in the fun. I will get there I always do.

Adam is now at last awake, and has woken in one of his moods, the first thing he did was start the normal argument about opening the curtains. It isn’t my fault that we are still in winter, nor is my fault that it cost so much to actually heat the house. I don’t know why but he will not let this subject lie, this has been an argument now lasting 14yrs. LOL. Anyway I have a couple of things to do before they arrive so that is for today. 🙂

They are married!

Their vows

A few Christmases ago I was given a gift of a good bottle of champagne, I decided to keep it for the right occasion. Yesterday at last brought that day I had been waiting for, the day to open and enjoy the contents, to toast those I love and care about and to enjoy as part of a celebration. I can’t think of a better time, than the day of my daughters wedding!

It’s not the greatest picture as I lifted it from a recording I made of the whole event. The quality of the streaming was really as I expected not the greatest, even though it was streamed in HD it still has that web cam look, but for not just me, but all the people around the world who were watching, it was wonderful. I know from Teressa’s Facebook page there were actually more people watching than there were actually there, I did feel sorry for her as I know that many had pulled out of attending right up to the morning of their day. I have never been able to understand people who do such a thing, if I make a commitment I always carry it through, regardless if my feeling change as the time gets closer. I am hoping that Teressa will be able to send me a few of the professional official pics as her dress was totally stunning and you can’t see any of it. The back of course is where the detail is and it has a corseted back with an inlaid panel of red velvet and white lace from her waist to the end of her train. Not too surprisingly Teressa arrived to the theme music of “Star Trek” which is actually a great piece of music to use for an entry, her father took her down the aisle to where John was waiting, but as soon as I saw her Dad I was really angry with him. It is normal that the wedding party all where the same things, yes he was wearing tartan but not the same one as the groom and best man, I know it was my tartan they were wearing, but I would have thought for just one day he could have just accepted it was Teressa’s with on what was her day. Adam and I were both unfortunately distracted at times by him during the service, as someone really should have reminded him how to sit in a kilt, but both of us were relieved that as an English man he wasn’t just wearing the kilt.

The registrar was as good as any I have seen and at first it all went really smoothly, I was a little surprised when John took his mobile phone out of his sporran, but he had his personal vow written on it, rather than memorized, clearly weddings have changed. As he was finding the page it was written on, Teressa turned and spoke to her step mum, who jumped up and left the room. She hadn’t returned by the time John finished his vows which I have to say were really well thought out, it was then supposed to be Teressa turn, but there was a hold up. I’m not sure if it was Teressa’s fault or Jennies, but Teressa’s mobile was missing and just like John she needed it as her vows were also written down. I think it took about 5 minutes in all for the phone to be handed to her and for her to get the page to load, I have to say that I found her vows far more moving and even contained some mild humor which I liked.

Civil weddings all seem to be over before they have started, I was married in a church to her Father and the service took about 40 minutes, Teressa’s just like my marriage for Adam took maybe 10 minutes in total. While they were signing the register, we returned to the music of “Star Trek”, Adam didn’t recognise it but as a “Geek” I did, it was the track from one of the films, memory fails to which number, but it was the sound track to the newest of the “Enterprises” leaving the space dock on her maiden flight, again actually very suiting to the occasion. While it was playing I found a tear escaping my right eye and well a couple from the other, it is an odd feeling as a parent to see your baby moving on in life. Yes I know this is her second marriage but I never saw the first and only actually spoke to her first husband once. For me I have gone this week from meeting one of her boyfriends for the very first time, to seeing her marry him, feelings that should have been spread over many years all crashed into a very few hours. It is also all back to front in many other ways as well, as strangely her getting married is all part of her at last being in the same country as me, she has come home instead of leaving it. I am so happy for her and for me, I have hated all the years we have spent apart and although she now has her own family, a partner who I know will love her and care for her, it kind of makes it all eventually worth while.

Just after the actual wedding with a couple of glasses of champagne inside me I went for a lie down, with a contented feeling that to day was a great day, with more still to come. As is normal alcohol had the great side effect of adding a numbing level to my pain, so lying down was another good point to my day. I was sure that when we were talking about the plans for their day that the speeches were also to be streamed, so that was part of my decision to just lie down for an hour. When I got up I couldn’t find anything on Teressa’s Facebook about the timing, only the time for the cake cutting, I was left waiting for that, but feeling really disappointed in not getting to hear them. At 8:30 the streaming started again and the picture below is the first of two cakes that were made for the day.

cake one

This one was actually part of the buffet, not the actual wedding cake, she had trouble choosing at first as she loved the topper and decided to go for it. Scroll down thought for the REAL cake, the clue to it really is the music they chose as the theme for the day.

Cake two

As you can see Teressa had changed from her wedding dress, but they cut the “Enterprise” cake with her Dads Navy sword. For those who want to know it isn’t a traditional cake in any way, it is actually some sort of American chocolate cake, I am hoping that some is brought here for Adam and I when they come to see us on Saturday.

Navigating help

Today is the big day, Teressa will be married this afternoon! Despite all the changes in date and the whole trauma of actually getting John here, we have made it to the long awaited wedding. There are still several hours to get through before I log on to the live stream so it is a case of keeping busy, just as I expect Teressa did. Not so unusual in this modern world, but now feels so odd as I can’t be there this morning, Teressa and I have been through the build up of the big day together already. We were together on the morning of my wedding, her helping me to do my hair, sort out my make up and get dressed to go to the registrars. Adam and I married in the morning, so the day didn’t have such a nerve racking length of time to get through, it ran quite nicely in time from wake up to event, I can only guess how she feels now with another 3 hours to fill.

My morning has been filled further than I would have liked by the visit from the OT, yeh, yes she really did appear. Apparently the delay was cause by the merging of two different OT departments, one of them had a back log of 3 years to see an OT, so just over a year actually wasn’t that bad. She is hopeful that she will be able to get me the cushion I need and she looked at my bed and is going to send a gizmo that will go under the mattress and will lift me up to the sitting position so I don’t have the fight to get up by myself. I was really surprised actually at how fast it all went, she as always had a list of questions that I answered, you know the same list we have all answered that often, that I know I could have told her the answers in the right order without any prompts. With that out of the way she just looked at my cushion from a distance, and then asked to see the bed I have. Without having to insist or even paint my situation graphically it was all arranged simply and smoothly, I now am expecting to have both sometime next week, probably on Wednesday.

I am constantly surprised by the ease with which the NHS just gives me stuff. I suppose I have a habit of seeing myself as just an average person, without too many real issues, mad I know but I don’t see myself much different to how I was 10yrs ago. Getting into my head an image of a disabled person as being me, just won’t happen. I can still picture the person that if I was asked to imagine how a housebound person looked, and that imagined person just isn’t anything like me. Yet here I am and here is my house slowly being adapting to care for the disabled me. Sorry I still don’t see it! Clearly though all those outsiders who look me over every now and then, they see someone who needs help and give it without question. I suppose we all have an image of who we are, and although I wobble my way around the house, I still don’t see that wobbly person, in my mind I just walk. I guess I will never see it, I now have an image of myself being bed bound and still saying I don’t need help.

From the beginning I have somehow navigated the system with ease. I have never had to put up the fight that I keep hearing other do. All my benefits had been awarded on request, every aid I have asked for has appeared and the closest I have ever got to a problem has been in getting this cushion. Even medications have been given to me on request and I have had total control of the levels of that medication, nothing has been hard to acquire. There are clearly only two possibilities here, either I have been incredibly lucky or other see a person who needs and deserves all of it, and anything else required as well, not the me I see. May be I just prefer to feel lucky rather than ill.

A slow decline

The days between things are always kind of strange, it is like being caught in limbo waiting for the second half that just feels so far away. Yesterday I was really quite whipped and I spent much of the afternoon happily in my bed, not really sleeping but in that wonderful in between state where you are just drifting in time. Adam wasn’t home until after 7pm last night as there is overtime on offer just now something which is much needed, so he has asked to be working three nights a week. Although not going to the wedding he will be here with me on Thursday so we can watch it together, and with it being the long weekend thanks to the Easter holidays his overtime isn’t really going to be felt until next week. It feels as though there hasn’t been what I would call a normal week at any point this year so far, what with hospital appointment, Adam catching up with holidays and Teressa getting married everything has been changing all the time. I am kind of looking forward to having a few weeks of normal, steady, unchanging life. I guess that is the normal way of humans, we hate being bored or stuck in a rut but can’t wait for normality to return.

I am still really tired and I have a sore back to add into my normal mishmash of aches and pains. I think it might have been the way I was sitting for so many hours on Monday, but the just left of my spine in my ribcage is constantly painful. Oddly I noticed yesterday that when I was lying down, it felt as though there was a large lump, not allowing me to lie normally on my back. I am guessing but I am reasonably sure that the muscles have swollen up and just need some time to settle again, annoying yes, fatal no. The longer I have been ill the more I am noticing that silly things happen to my body for very little reason. I have actually put some thought in to this and I think that the more our lives cease to be active and normal, the more things that go wrong with us. If we are not using our muscles for the things they are designed for and we rest them constantly, the weaker they get. I think that even a healthy person living my life would start to go through some of what I do. Clearly my illness has made it all worse, but if you don’t use muscles their bulk decreases, and their ability to withstand any use at all, diminishes. Just sitting all the time has clearly removed the muscle tone all over my body, and my weight has increased, you don’t have to have MS for that to happen. As time is passing I am increasingly getting problem related to inactivity, part of the problem I am having with my bowels is most likely because I am not taking any exercise, those problems can only increase as time goes on.

As a race we are spending more an more time just sat doing no exercise at all, believe me if I could I would. I am learning the hard way of what happens when you can’t, and I wish I could show all your couch potatoes the future you are setting up for yourselves, you might not be ill now but give it a little time and you will start to join me in a life that no one really wants to live. I find it an incredibly sad thought that those who are actually well, with nothing to stop them remaining that way, are allowing themselves to set up a future they could so easily avoid.

Somehow it feels wrong that you start out with one condition and as it takes control of your body, it invites and causes so many other conditions to join in. Fighting one illness is hard enough without having so many other to fight as well. I think that is part of the reason why when you a diagnosed the list of symptoms you can then look forward to, don’t seem to match with what happens to you. I have MS but it isn’t the reason for everything else, and I know understand why they can’t tell you what your future holds, or how ill you will get. They can’t tell you because we all collect different partners to our main illness, they can’t predict how disabled you will become or how long you have to live, because MS never seems to be the only illness that anyone ever has. Who would have thought that the lose of the use of my hand would have been the start of my being housebound, it sounds ridicules, but because of everything else one small change, changed everything. Just as one small change in the life of an otherwise fit person, could keep them fit for ever.