Step by step

Taking time out from blogging is starting to open up my life again. There has been a list of things waiting to be done, that I just didn’t have the energy to do. The other day, I started work again on what now feels like a long ago dreamed up list of the things that I need to know to put my mind at rest, when it comes to the subject, of my future. The other week I had broached the subject with Adam, about getting in contact with Social Services in regard as to what help they can and can’t give us. I did write about it, but it took a second discussion and my finding both the email address and phone number, before Adam contact them, at the beginning of this last week. Several phone calls later, and we have managed to arrange for someone, to come here and talk to us. Someone will be coming out to see us, at the end of next week, which just proves what I suspected, nothing happens as quickly as we want. If we had waited until it was to us an emergency situation, we would have been struggling for weeks. The next on the list, well it was, of course, sorting out the issues with the grave that I thought I owned in Aberdeen. Somehow, when my son died, the documents for the actual plot, landed up in my ex-husband’s name. To my surprise and delight, when my daughter took the documents to him, he too was shocked and signed all the papers needed, for the name change to take place. The next step would be really simple for most, but not for me. I had to make a phone call. This time, I knew that it had to be something that I did, and not something I could hand over to Adam.

Despite all of the undeniable facts, that I am heading rapidly in a downwards direction, Adam is still finding doing anything that is connected to my death, extremely hard to deal with. I didn’t need to talk to him about that fact, so I knew that regardless how I hate the phone, I had to make this call. I have to admit, that it wasn’t just this dragging exhaustion, that was stopping me, but also the fact that I somehow had to talk to a stranger, and worse still, one I couldn’t see. Without a doubt, it had to be done on a good day, even then, I knew that I was going to have to work up to the point, when I could actually lift the receiver, and dial the number. I tried a couple of times last week but just couldn’t do it. I just knew they were days when things weren’t as good as they should be, so I waited. I know that might sound pathetic to many of you, but it really is something that is that difficult, for me to do. I eventually managed it on Wednesday afternoon. It lasted no more than five minutes, but I was so glad to hang up and take a breath equal to the one I took before I committed myself to action. They hadn’t mentioned it when I phoned to get the forms, a conversation that found me in tears within seconds of saying “Hello”, but still I wasn’t that surprised to discover there would be a charge of £34 to redo the documents. I actually made it right through the call without a single tear, just a lot of stuttering. I actually can’t remember when I last wrote a cheque, but fortunately, I had had the foresight to put my chequebook where I could and can still see it. Which proves I do have a brain occasionally.

Adam took all the paperwork with him when he went to work, so he could post it for me. That evening, when we were just sat watching TV, he turned around to me and said, “I was thinking when I was at the post office, how weird life is. Just 16 years ago, we were happily living in our first flat together, and there I was posting off documents that referred to your funeral. How has this happened? No one should be arranging their wife’s funeral while she is still very alive.” I thought for one horrible moment that he was unhappy about what I was doing, but it turned out that it wasn’t that close, it was more a case of no matter when it just wasn’t right. As I said to him, though, you just need to watch the TV adverts to see that these days, people are planning and paying for their own funeral all the time, it is becoming more the norm, just as it should be.

Quite rightly, both of us actually still find it a hard subject to talk about freely. We do when circumstance brings the subject up, but it’s not a regular topic of conversation. Like most things, though, the more we do, the easier it seems to get. but no one wants to think about the actual event and all the stuff that surrounds it, it still feels a little like talking about it, means that we want it to happen, which of course, we don’t. I know that when I sit here writing about it, it does read as though I am totally at ease with all of it. I am no more at ease with it, than you are about your own death, it’s just I am the type of person who wants to remove all the added stresses of my death, from Adam. I will never remove the pain he will feel, but if I can make the rest easier for him, then I will. Death is a fact, and it does have to be discussed and I clearly believe that things have to be organised and arranged in advance. If I hadn’t started looking into it a couple of months ago, we wouldn’t have had a single clue, that my son’s grave was in my ex’s name. If that hadn’t been discovered until after I died, it would have caused huge issues. Once I have the documents all correct and legal to use, the next step is to once again, contact the funeral directors, and get it all signed and sealed ready for the date it will be needed.

There is for me a strange comfort in getting all of this organised now. I’m not looking forward to the meeting with Social Services, but it has to be done. We both need to know what they can and can’t do for us, and even just getting the first contact in place, so when things get worse, they are there, no hassle, no assessments, just hopefully a phone call and life will go on. Once that one is done, the next and final one on my list is to contact the hospice here in Glasgow and talk to them about their possible role in my life. Thing are moving slowly, but they are now moving.

 

Please read my blog from 2 years ago today – 29/05/2014 – Out of Control

Another drug is now being prescribed for MS in the UK and once again I have received several really thoughtful tweets from people to let me know about it. I actually had for once beaten them to it as someone mentioned it months ago, of course, I checked it out straight away, only to be once more disappointed as it is for the treatment of relapse-remitting MS and of no use to me at all. Sometimes it nice……

Useless

Over the next few weeks, I’m going to have to find the strength to support Adam, it’s my turn, to step up and be strong. A couple of days ago, he had a phone call from his mother, she wanted to meet up with him after work for a coffee. There was nothing unusual about that, it’s something that happens every month or so. She lives a good 40 miles outside of Glasgow and as we don’t have a car, they don’t see each other as often as they did when she lived just down the road. As she was going to be in the city to see some friends she thought it was a good opportunity. Adam agreed, but told her that he wasn’t going to stay too long, as he wanted to be home for me, I told him to stop being so stupid and just spend some time with her. It doesn’t matter how often I tell him that, he always sees his place as with me, not with his family.

I had actually forgotten yesterday that he was meeting her. Nothing unusual there then, but when the time reached 6:15, I was wondering where he was. Then it clicked in and I settled myself to the fact he had taken my advice for once. I was though still a little surprised when 7 pm came and passed and he still wasn’t here. When the front door did open, within seconds I knew there was something not right as he was wound up and frenetic, the tone of his voice said that life had somehow changed. His mum had found out last week that she has breast cancer and will be having a mastectomy in a couple of weeks. She hadn’t found a lump or anything herself, but she had realised that since she moved from the city, she hadn’t had an appointment to go for breast screening. She had been to see her doctor about something else and mentioned it then. It was at the following appointment that they found two lumps in one of her breasts. The needle biopsy proved that one is cancerous and the second contains precancer tissue. There is no sign at all that it has spread, but to be on the safe side, they are going to perform a mastectomy, a simultaneous reconstruction, followed by chemo.

Clearly Adam has a lot to settle in his mind. As his mother pointed out and he knew inside, if it were serious, she would have been in the hospital at that moment, not sitting drinking coffee with him. I think Adam was as he always is when someone doesn’t let him in until something is a done deal, he is tied up inside, because he feels like he should have been there to support her through it. As I said to him, she wanted to know all the details, before telling anyone else, just to have it all settled in her own mind, so she knew just what was happening and what to say. I understand that fully, as I have to admit, I am very similar in that way. It was something that I also know Adam didn’t like when I was going through the diagnosis process, I went to all the appointments, except the final one, by myself. By the time I saw him a couple of hours later, I had my head around it and I was ready to support him though what they said, but he felt, he should have been supporting me. We all want to protect those we love and to make it as easy as possible for us all, it’s just some of us like to do it in our own way.

Because I know him, I also know that he will just tie himself up in knots, and there is nothing in this case that I can do about that. To make things worse, I’m still waiting for a fresh appointment for my breast screening, something that originally should have been done and dusted over six weeks ago. Which is something that I am sure has come up in his mind just as it did mine.

When things like this happen, it makes everyone feel useless, if you happen to be ill yourself, fighting your own battles, you feel it even more. What can I do, other than just be there, as my totally useless self? I can’t make him nice meals, run around being generally caring, all I can do is try and find the right words when they are needed. Even then, it is limited by a brain that won’t co-operate, that won’t give what is needed, not because I don’t want it to, but just because I can’t. I want so much to be able to give to them both, but I can’t, I can’t even find enough for myself. Even last night, all I wanted was to be there for him, so I tried to stay up just a little later than usual. My body wasn’t going to play, it just shut me down and as sleep was taking over, I had no choice other than to go to my bed. Useless, I couldn’t even manage to stay awake for him. Even right now, I’m just sat here, doing what I always do, because I can’t do anything else. If I were to go and just sit beside him, I know without a doubt, that once more sleep would take over, as I’ve been fighting with it all morning. I’m feeling nauseous and in pain, but that’s the life of someone with chronic illness, being a

If I were to go and just sit beside him, I know without a doubt, that once more sleep would take over, as I’ve been fighting with it all morning. Sitting doing nothing, would just be the final invitation for sleep to once more take over. I’m nauseous and in pain, the normal everyday life of someone with chronic illness, being a carer on top, is that step too far. If my body knows how to do one perfectly, then that’s how to be useless in every possible way. Despite that, whatever happens over the next couple of months, I somehow have to find the strength to at least get him through the tough points to come, and show him that no matter how useless I am, I can take care of myself while he cares for his mother, if, and only if, that’s what she wants. Thinking about it, that might be the biggest battle of all, helping him to feel settled, while she heals in whatever way, she feels she needs to.

 

Please read my blog from 2 years ago today – 03/04/2014 – Catch up

Everything online seems to have suddenly speeded up, after two years of slowly building it day by day, person by person, last month it all just sky rocketed starting with over 3000 new twitter followers bring me to my first goal of 50,000 now passed. Along with the always growing number of tweets I get daily, the interest in all my blogs has also made a huge jump and although none of this was my starting goal or intention, it feels really wonderful to know so many people are out there enjoying what I do daily. Those who are still here since the start, know that I quickly did set a purpose for all of it, no, not just giving me something to do, but far more importantly trying to pass on what I know about living with illness and surviving being housebound. It is also the wonderful…..

 

 

Inspiration for me

I don’t know what got into me yesterday, but even after I finished my post, which usually clears my head, I found myself still feeling the same. Reading it back, was a huge mistake, I probably should have just left that for a few hours or so, but I didn’t. I found myself fighting tears, tears that had no reason or no result. I honestly felt so alone, it was painful. The stupidest thing about that is, I had Adam here. He is on a weeks holiday just now, so oddly, I haven’t been alone for days. Mind you, I guess that’s why that sort of alone hurts, I could have had a crowd around me, and I still would have felt the same. So I am happy to report, that today, that feeling isn’t gone, but it’s back in its place, part of me, but not all of me.

I am now on my third load of tablets, designed to help with the pains in my guts. The first two failed dramatically. The Mebeverine brought so many problems with it, that the fact that it did help in lessening the pain, didn’t matter. I was left with the worst heartburn I ever remember having. Getting someone who has no memory, to take a tablet twenty minutes before a meal, is now officially impossible. I either forgot to take it or my own speciality, I took it, then forgot to eat. That one produced the worst heartburn, but, even when I got it right, the side effect was still there. The night that it managed to scare me, was the one when I actually woke because I had a mouth full of sick. Not a little bile, but a mouth full of that day’s dinner. I’m just glad that I woke.

I am now on Alverine. This is just day three, and although it isn’t perfect, buy I feel so much better. There is still pain, but it is at the same level of pain as I get anywhere else in my body. In other words, it is at a manageable level. For the first time in about three or four months, I have just had two nights sleep without interruption. For a couple of years now, I have slept for 11 hours straight every night, then suddenly, I was awake every night in pain. I have become so used to it, that I had a set routine, I would go to the loo for a pee, head for the kitchen, have a cigarette and head back to bed. The problem with that was, that I never went back into a proper sleep. I would say it was a mixture of a dozing and moments of true sleep, which just isn’t good for me. If there is one thing that I need it is sleep. Right now, physically I feel better than I have in ages, which is probably why I felt as I did yesterday, it happened, because I could, I wasn’t tied up in nothing but extreme pain.

For two nights in a row, I have slept, nothing got in my way. Then this morning, I woke with the alarm, but at the same instant, I felt the pain in the left side of my back and the top of my legs. It is something that I get a lot, but it was just a bit of a bummer, to find that not all the pain was controlled quite as much as I thought it was. Right now, I’m still in that pain, lessened because I’m now upright, but I know the only thing that will clear it, is emptying my bowels, and that’s probably not going to happen for a couple of days. I know that I was probably just being over-hopeful, but if we don’t hope, what else can we do.

It was a long time ago now, that I made the decision that modern medicine was the thing, I was going to put my hope in. Having over the years, tried almost anything that I could get my hands on, that I could afford, I made my choice. For me, it was partly down to cost. Living in the UK, I have the benefit of free medical care. Living in Scotland, I also get all my medication for free too. Without a doubt, if I had to pay for everything, I probably wouldn’t be so quick to say, “This isn’t working please can we try something else.” I suspect, working or not, I would, at least, push on with what is partially working until, I had taken everything I had been prescribed, before switching. So I am in a luxury position compared to many, in reality, it’s the way it should be for us all.

I have to say the costs that others faced, wasn’t something that I even thought about until I joined social media. It was like crashing into a spike-filled brick wall. Suddenly I found myself talking to people who were having to choose between their medication and basic things we all need to just live. For me, that whole experience was extremely hard, I even went through a spell of feeling incredibly guilty. Here I am surrounded with medication for every aspect of my health, talking with people who didn’t even have access to anything beyond aspirin. I felt it so badly, that for about a year, I stopped talking to people on twitter at all, and closed down my Facebook account. Yes, I still tweeted, but I avoided actually responding and ran a mile from the chance of chatting. Almost daily, people tell me how inspiring I am and how much they admire me. Personally, I don’t get it, as to me, if there is anyone who our admiration should go to, it’s those who live our lives, without the care that we have. If for some mad reason all my medication was suddenly taken away from me, well, I don’t think I would be here very long.

Today, someone asked me how I managed to be so upbeat all the time. Well, now you know. It doesn’t matter how bad I might feel, how much pain I am in, I know that I am lucky. Yesterday was one of my blips, I wouldn’t be human if I didn’t have them. Yes, I was already a positive person, but the above is something that I never forget. I no longer feel guilty for the care that I get, but I do count myself as so privileged to live in a country that even cares at all.

 

Please read my blog from 2 years ago today – 19/03/2014 – A perfect life

Today so far is a good day! It actually feels good to just be able to say that as it doesn’t often happen, the last couple of days have been kind of draining and I have spent a bit more time sleeping than usual, I guess it made the difference, but I can’t really sleep more every day, as I just wouldn’t have time to know I’m still here and alive if I did. These days I sleep 11 hours at night and between 1 and 2 hours during the day, imagine taking that many hours out of your day, whilst still trying to be active in the world and to spend time with those you love.

It is probably the one thing that I find the hardest, just how little time I really have to spend with Adam. During the week, I see him for less……

 

 

 

 

Somewhere inside

To an outsider, my life must look so dull. To me, no two days are ever the same. I never realised the depth and variation of sensations, that there are, that one human body could produce, nor the intensity of feelings or the emotional kaleidoscope, that could produce. I guess that we are all mistaken in making one assumption, we are all the same. It’s an assumption, that I made like most when I was still a child. I looked at the world and saw that we all have one head, two arms and two legs, therefore, we are all the same. I had that mistake reinforced when I was constantly told my doctors in my twenties, that there was nothing wrong with me. All the pain, the fatigue and everything else I felt, apparently, didn’t exist, or everyone out there was going through exactly the same, and I was just a wimp. I accepted the second, as fact. I was a wimp and I was just going to have to get on with it, as everyone else did. In some ways, I am now glad that I took that option, as it taught me how to live with what I now know is an amazingly difficult condition, to live with.

I can honestly say, that no two days are the same. Every hour of my life is different from the one before. If I were to look at it on the basic level, yes, I could just say that I am in pain and discomfort, but even that changes all the time. The combinations, the exact locations and how they feel never stands still. I might be motionless, but my body never is. I have tried so many times to explain what it is like, to live within my body, but it doesn’t matter which post you pick, which day, month or year, not once have I been totally happy with my description. I can’t write in the detail required, in a way that would compel anyone to continue to read. By the time, I had pieced together, a fair and detailed description of one part of me, it would have changed and my words would be wrong. I know, because I have tried and the result, is that I delete it and I try again. If I get close enough to being happy and I publish it, I know by the time it is read, all of it will be history. Capturing my life is like taking a still photo of a tornado, it tells you little other than that second in an ever changing process. That’s why I’m happy I learned to live within it, when it was still forming, and long before it became so destructive.

From time to time, someone starts to read who understands how my life is. They recognise some of my posts and connect to events and the feelings that they bring. Those moments of connection, of understanding, mean the world to me. I know and I have said it a million times, our conditions don’t matter, If we share symptoms, lifestyles and emotions, that is what matters, that is enough to say that we are one. But, there are times when I feel so totally alone, like I no longer have a head, two arms and two legs, because, I can’t find the connection of anyone who understands it all. The world out there hasn’t changed, the world out there still looks the same, so it has to be me, it has to be me as I don’t seem to fit any of the moulds any longer.

I have yet to find one other who has PRMS, who I have found that connection with. I have met I think maybe two or three on twitter, but they weren’t the type of people who wanted to share. That’s OK, we all have a choice as how we want to live and finding someone else as open as me, won’t be easy. I know PRMS is rare, but I never thought that it would be such a lonely world to live in. As I have just said, without a doubt, there are people out there who get it, so maybe, it’s just me. Just me, is lonely. Not lonely in a conventional way, it’s not about company it’s about total understanding, connecting, finding a mirror to look in and seeing a reflection I understand. When your body is in turmoil, when every second is different from the one before, well the odds of finding someone in total alinement, says it isn’t going to happen. Even if it were just a shadow world, I’d like to, at least, say hello, long enough to high five in recognition.

I know I’m not the wimp that I once thought I was, I’m a long way from that. I know that I am probably the luckiest person in the world, to have found someone who loves me, who supports me and cares for me. I know that I have a huge community out there of people who read my daily ramblings, who care enough to keep in touch and say hi, from time to time. Yet, as I said, sometimes, it just feels as though I’m alone, which is probably the craziest thing I have ever written, but right now when the pain has jumped off the scale several times as I have been writing this, when I feel as though I have an alien child inside me, ripping my insides apart and spasms flying up and down my legs. I feel alone. Maybe, we all feel like this. Maybe, I’m more average, more “normal” than I think. Maybe, it’s just one of those days.

 

Please read my blog from 2 years ago today – 18/03/2014 – One simple fact

I find myself in an unusual position today, my right thigh, yes I did say right, is in almost constant spasm right down the front of it. The pain isn’t any worse than I often have in my left leg, but just being on the wrong leg makes is 100 times worse for some reason. You wouldn’t believe just how something appearing where it shouldn’t be, can actually really make feel far worse than it should, maybe it will settle down as the day goes on, or maybe I will just start to accept it and get on with everything……

Safety first or last?

Someone seems to have stuck a stick of dynamite up my GP’s backside and blasted him into the 21st century. Last month, out of the blue, the receptionist told Adam, that they now have a website through which we can now order my prescriptions and book appointments, without having to phone. I checked it out with total excitement, yes, my world has become that limited, and when I read the leader page, my excitement grew. There was my dream, access to my personal files. It didn’t last long, as it turns out it is up to each GP individually to decide if they want to open our notes this way or not, mine has chosen the not. I had also hoped that I might be able to request a phone call, since clearly I don’t need appointments, but no luck there either. On the good side, we can at least put in the prescription requests.

Then yesterday morning, the phone rang, it was a call from my doctor, well not quite, it was from the surgery number. There was this woman who introduced herself as the practise pharmacist. I wasn’t even sure that the practise employed a cleaner, far less something as posh as a pharmacist, so I was somewhat shocked. No, I’m not implying the building is dirty, it’s just I wouldn’t have been surprised to discover the receptionists were also the cleaners. Anyway, the pharmacist was calling to check that I was taking the correct dose of one of my drugs. There was an error in the dosage on her screen which I had spotted on the pack when it arrived here. Because I knew what I should have been taking, I had ignored it, but she sounded as though she was more than a little concerned and told me that I must only ever take one puff twice a day, not the two on the label. It was clear from the quantities we had been ordering that that was in fact, what I was already doing. It set me thinking about who is supposed to check what, as accidents can undoubtedly happen, we are all human after all. This one, surprised me, though, as I have been on that inhaler now for well over two years, and it has been supplied by at least two different chemists. The original prescription had been requested by my consultant, my doctor then wrote it up, and it has been in the hands of several pharmacists, but suddenly, out of the blue, one stopped and checked it that bit more closely, what happened to all the others?

We automatically assume when a drug arrives in our hands, that we have the right drug, with the right dosage instruction written clearly on it. I have never once, looked further than that. I’ve never checked online to see what the recommended dosage is, or questioned anything about any drug when first prescribed. I suspect, the same can be said for all of us, we assume, we expect and we believe that it is always correct. I know that in the past on two separate occasions a chemist has refused to fill one of my prescriptions, without first talking to my doctor. On both occasions, it has been the same thing, the very high dosage of steroids that I at times need for flares. They both wanted to double check them, as the dosage is off the scale for most people. That, I believed until yesterday, was the safeguard, the pharmacist. This time, I was lucky, when I started taking it, I remembered what my consultant had said about it, and how to take it, so I knew. That was pure luck, as normally, I remember nothing and by now I could have been taking a double daily dose for nearly 2 years. It appears that all our medications safety relies on, is luck. Is that really a good thing to work with, just luck.

Lately, we are being repeatedly told that if you can’t get an appointment with you doctor, and your condition is minor, to consult your local pharmacists. The TV ads portray this well-educated person, just a step below our own GP’s, who’s knowledge is vast and that we can trust, trust to prescribe us the correct treatment for what ails us. Long long before those ads appeared, in fact, for a lot of my adult life, that is exactly what I have done, for anything not serious enough for a doctor’s attention. I’ve watched them filling prescriptions, two of them side by side, apparently checking all is correct. I have even seen some, flicking through drug manuals, I thought to check dosages or any detail, they were uncertain about. For 2 years, my prescription has been in the hands of what must be dozens of these professionals, yet only now, one spots the error? Why?

In this case, there was no danger, but it could have been a very different story. There are a million and one drugs out there that could have killed me long ago, some of which I am actually still on. It has made my realise that maybe, just maybe, that in the future it might just be worth checking ourselves, something that these days, it’s easy to do. At our fingertips, is the exact same information those well paid professional use daily. Putting in one more check as we start yet another new drug, might just save us problems in the future.

 

Please read my blog from 2 years ago today – 17/03/2014 – Still longing

I used to think that when I grew up I would know the answer to everything and that my life would flow smoothly as I would have nothing left to learn. It’s amazing just how wrong a child can be and how far from even scrapping the surface I am from actually knowing anything. All of us have a million questions daily, some small, some amazingly big, but in our minds at the second they appear they feel just the same. I never got the chance to do so many things in my life that I wanted to do, not because anything really stopped me but more because life just took over, time pasts and somehow those things just became unimportant. The places I wanted to go, the……