Someone will die

When Adam called me yesterday at lunch time, there was something in the tone of his voice, that told me there was something wrong. The other day when he was at home there had been one of those automated phone calls to remind us that I have a hospital appointment next week. It turned out that Adam hadn’t booked the transport, despite my telling him when he took the responsibility over from me, that he had to book it as soon as he was aware of the appointment being made. As always, I couldn’t remember why it was important, and he was determined to do things his way. Yesterday, he called to book not just the ambulance for next week chest clinic appointment, but also the one for two weeks later at the breast screening clinic. He was stunned to find out, that there was no transport available, for either date. In fact, there is no transport available until the beginning of April. When I had gone over the system, explaining that you have to book early, my brain did it’s usual, it totally blocked out the reason why, all I could say, was that was the way it had to be done. It was about twenty minutes after he called, that I remembered, this happened once before, several years ago. It is one of my brains favourite tricks, I know all the rules, all they things that have to be done a certain way, but why? Well, don’t ask me, I don’t have the first idea, just the knowledge. At that time, just like this, we have been forced into rearranging the appointment, because, without the ambulance and their stairclimber, we can’t get there.

My chest consultant asked when I thought I should go back to see them. I said six months, but he wanted to see me in just four. There was an issue with the first booking, again with the transport, if you aren’t there first thing, you don’t get home for hours, often late into the evening, as it wasn’t a morning appointment, we had to change it. It was moved by two weeks, which on its own, is not that bad really. Now after speaking to the booking clerks, Adam has managed to book it and the transport, for the 4th of April. We were lucky, getting an appointment that close, it was only because there had been a cancellation. He is sorting out the other appointment this morning, but I just had a phone call from the ambulance service, cancelling the 4th of April transport and telling me, there is no space until after the 7th. Unbelievably, the “Hospital transport service”, as they like to call themselves, are now running the NHS, for those of us who are disabled. Adam is now going to have to go back to square one, and rebook everything. No matter what dates he manages to arrange, it’s beginning to look as though it will be six months between my appointments, not four.

This of course also throws up other issues, ones that must cost the NHS a fortune each year. How many appointments are cancelled each year, due to this problem, meaning doctors time being wasted and waiting lists just getting longer and longer? They spend money every day paying for staff to sit and make appointments and to manage individual consultants lists. No matter how proficient they are, if the transport service forces appointments to be cancelled, there will be gaps, points when wages are paid for doctors and nurses to be ready to treat patients, that is not being used. Every time an appointment is shuffled, it just makes those list artificially appear longer. Targets will be missed and all due to transport, not the medical service.

I find the whole thing unbelievable. If anyone wanted proof, that they system isn’t working, well here it is. What happens, if you consultant wants you to return in a week, or two weeks? What if it was essential for that appointment to be then, due to treatment plans? Would they just leave you at home to die, as without a doubt, this sort of service if it’s allowed to continue, will result in just that. It could also result in patients who could easily be treated as an outpatient, having to take up a hospital bed, something that is in short supply these days. Bed blocking, is constantly blamed on the care service not being up to the job. I bet if it were possible to investigate, there are people who are in this exact position right now, sitting in a bed, twiddling their thumbs. I said the other day, that the housebound and severely disabled receive a second class service, well, I’m changing that, we get a third or fourth class service if that.

I asked Adam to take over the arranging of hospital appointments and the transport, not only because, I find the phone hard to deal with, but I also found the system frustrating, even when it worked in their version of perfect. Just hearing all of this second hand is already stressing me, so I feel sorry for Adam. I feel even sorrier for other carers as Adam works for the NHS, in the very hospital where I go for the bulk of my appointments. He knows the system, not only the system but all the people who work in it, so it has to be easier for him than it is for those other carers out there. All he has to do is walk down the corridor to the very clinic and have a chat with the receptionist. He can, in fact, check the computer himself, so he knows exactly how the lists look and he can stand there looking at it, while he talks to the transport service. Everyone else, can only book an appointment, cross their fingers and try and book the transport. How long is it going to take, for the NHS to realise that their system is not suitable for purpose?

I was on the verge of publishing this when the phone rang. It was Adam, he just wanted to let me know that it is all sorted, well for the chest clinic anyway. We have both appointment and transport now booked for the 25th of April. As for the breast screening clinic, well the girl on the desk couldn’t give him a date over the phone, and will be posting it out to us.


Please read my blog from 2 years ago today – 10/03/2014 – Lost and in pain

I’m not here today. I don’t know where I am but I just know that I don’t feel connected to myself, somehow lost. I know in the last few months this has happened several times, but I will never get used to it, I guess it is as close to one of my ultimate fears as I ever want to get, my mind so taken over by drugs that I can’t find myself. I don’t blame the drugs for this because if it were them, well I…….






Something to think about

Two hours ago, I knew exactly what I was going to write about this morning. I know, I should have made a note, or written at least the first line of my post, but I didn’t. My intentions of speaking to my doctor today fell flat as well, apparently, he isn’t going to be in the surgery until later this week. I know that I could have spoken to his partner, but I really didn’t want to put myself through that. I knew that it’s wrong of me, but I really can’t stand talking to her. She is one of those doctors who is never satisfied with anything that you say, and always wants to go through everything and every little detail, before, she does anything at all. If she prescribes anything for you, she then insists in telling you every single side effect that might just happen, even if you have had the drug before. If I were desperate and needing assistance right now, of course, I would talk to her, but as this is just a step on from my conversation of last week, and a couple of other small things, I decided that it was better just to wait. In some ways, that’s good, as it shows that I am more than happy with and totally trust my own GP, but it also has a bad side, as she is the only other doctor in the practice. Our relationship with those who care for us, is so, important, it is probably the relationship, next to our family, that matters the most. If my GP were to retire, I believe that I would have to find a new surgery to take me on, as I quite simply couldn’t put up with her as my solo medical contact for everyday matters.

I have lost count long ago how many different consultants I have seen, since, I first knew I was ill. Even now, the consultants who care for me, keep changing, you never know until you arrive at the hospital exactly who you will see. To me, this is wrong. Personally, I honestly think that our care should always be in the hands of the same doctor throughout, of course, should they leave that is a whole different issue. Trust, is the greatest part of care, and it is something that has to grow, it just doesn’t appear because the person in front of you, is a doctor. Especially, if like me, your experience over the years, hasn’t always been exactly a good one. I have been dismissed, wrongly treated and sent home with the feeling that they don’t believe me, so many times, that trust, is now, an even harder thing to find. Being wheeled into a room by Adam, to be faced with yet another stranger, yet another person who knows nothing about my or my health, always, makes my heart fall. It doesn’t matter how nice they are, how much they try to put me at ease, or how friendly their smile is, the second those questions that I have answered a million times before appear, I know once more, that I am back at the beginning.

Sometimes I wonder what the point is of all those notes that they write. Why bother writing any of them, if no one reads them? I know they don’t have the time to read them from beginning to end, but even a brief scan, of the last two visits, would put them on the right road, before, they start asking questions. I honestly fear, that the day will come, when I will just shout back at them “Read the bloody notes”, but I wouldn’t be that rude, I just think it over and over. How hard is it really when booking a repeat visit, to book it with the same doctor? I have sat there in the waiting room, over and over seeing the doctors I know, passing and smiling a hello, then to be called in, to see yet another total stranger. Why? I can’t find the logic, as surely if I saw the same ones, the ones that know me, the consultation will be shorter, with less stupid questions. Yet, time after time, this has happened, and there seems to be no way around it. Yes, I have in the past asked to see the same doctor next time, the answer is always the same, “We can’t guarantee that”. OK, I get it, four months from now they might be on holiday, or sick, or not even work there any longer, but they could at least try.

If you don’t have trust in the doctor in front of you, there is no point you being there, no point even talking to them. If you don’t trust them, don’t trust what they say, or what they prescribe, I expect, in some cases, their treatment may even fail, down to that lack of trust. Our minds dwell on what we fear, are ill at ease with or even just question. Our minds can do things that we ourselves aren’t even aware of, they can make our physical state worse, simply because we don’t trust, or like, or want to see again, that one person. Every time you take the tablet they prescribe, you look at it with mistrust, as you are putting your feeling for the person, into what is lying in your hand. That person who made you ill at ease, who dismissed you from their office without a smile, or even a pleasant world, is there in front of you every time you take their horrid little pills. Yes, I have been there, a long time ago now, but I remember it all too clearly.

A good doctor isn’t the one who knows more, who has read every medical paper ever written some or has an arms length of initials, after their name. Without a doubt, knowledge means a lot, but it makes them knowledgeable, not good. A good doctor is the one who greets you as an equal, not an irritation, who listens with knowing nods, not disinterest and with a twisted mouth or raised eyebrow. A good doctor takes the time to know you, to understand you, not just as their patient but as a person. A good doctor doesn’t just go for what they think is obvious, they don’t just look at your list of conditions and medications and draw a conclusion, without first listening to what you have to say, even if, it takes a little longer than they would like. A good doctor treats the patient, not just the symptoms and conditions, and before you think that they don’t have that time to do all that, the good ones, don’t need extra time, as they’re humans, not a know it all machine.

Each one of us as we navigate the world of the chronically ill, will meet more than our fair share of the rogues, and all too few of the good. Is it surprising, then, that I along with the rest of us, know the doctor we want to talk to, the doctor we want to be treated by, the doctors that we trust. In this relationship, we need trust, we need to know who they are and what they can do for us, as it is our lives, that they literally have their hands, not for a minute, or even ten, but forever. Every second, we live, depends on their care and our trust in them. Every second of the outstretched years that await us, our comfort, our pain, and every breath that we take, can depend on them. How our doctors make us feel, doesn’t end at the hospital or surgery door, it doesn’t end until we do.

Today, you might want to see one about a cough that doesn’t go away, it’s a moment, a piece of paper with a scroll you can’t read. You might not see one again for years, with luck, or you might be back as that cough just won’t go away and you find yourself at the start of the trek called chronic illness. Do you like your doctor, do you trust them without the slightest doubt? Would you put your very life in their hands without a seconds thought? Would you really? If you’re not sure, them maybe, just maybe, you should think again about the doctor you see. Their surgery may be convenient, near your home or your work, but is that a good enough reason to be registered with them, did you really check the other ones out there, or was it just pot luck? We, the chronically ill, live with their hands and their work guiding us throughout every day, to us, our doctors are our life, as, without them, we wouldn’t be here. So ask yourself again, just these simple questions….. Do you trust your doctor? ………Totally?


Please read my blog from 2 years ago today – 26/01/2014 – At last the proof

One of my many questions about my health has I believe been finally answered, how, well it was simple I just needed to use my eyes, something I seem to have forgotten to do. For months now there has been a possibility……








Joining the dots

Every cell in my body is no longer just tell me, they are changing, they are now screaming it, so loudly, that my head is ringing with it. It’s about six months ago that I first felt that I was in danger of being on my feet and that my wheelchair, was once more, needed in my life. At about the same time as I found that not only; were my legs muscles becoming a fan of just collapsing; every sensation my PRMS had found to play with, had also become heightened; so to where my tremors, they were increasing; my spasms were more frequent and favouring the more intense, and my mental symptoms were, well they too were more intense; everything was moving, and moving rapidly. Six months is an incredibly short time, it’s not like when we were children, when months lasted forever, now, especially now, they have become incredibly short.

When that day came that I let the words actually come out of my mouth, “I need my wheelchair”, I had this huge lump in my throat. It was all well and good, thinking it, thinking it is safe, it’s silent and no one other than you knows that thought is even there. Saying it, is like writing your own death warrant, there is no going back. Admitting it to the world is a very different thing from the world telling you. If a doctor or the MS nurse had said, “Well Pamela, I really think you are going to have to use that wheelchair”, well I would have had someone to blame, an outside observer who had diagnosed a weakness, but I just had me. I think it was the first time where I have been the only one, behind changing my life, prescribing what was needed to deal with the course of my health. I was also doing something else, using a great big piece of equipment as a foil, not to hide me, but to hide what I didn’t want to see, or even think about. It partially worked. It was a distraction. I had to buy this or that, make sure that I had the optimum space to manoeuvre in, without rearranging the entire house. Things to do, things to think about, anything but stop and admit. I could bypass everything other than my brain, it has a nasty habit of showing the world my shortcomings. Stutters, slurs and blanks, appear throughout almost every sentence I dare to try and speak. Adam, well he’s used to it, but my visit to the hospital two months ago put a spotlight on it. The consultant spotted it the second I entered the room and tried to speak.

No one but us, knows about those maddening sensations, unless, we tell them. Well, no one can see a tingle, or a lightening shock hugging our skin, not even us. Unless we jump, squeal or flinch, they are our secret. Which probably makes them one of the hardest things for those who don’t have MS to understand. Yes, we can explain, that they feel like this of that, but the average person, they only feel something similar for the briefest of seconds. They have no concept, no understanding, or any way of even imagining, what it’s like to feel them for hours, days, months or even years. Pins and needles, so what there nothing. Maybe, until you have them running across your face for a whole day. Nothing, until someone, turns those pins into knives, and those needles into spears. So numbness, well it must be a joy to someone who lives in pain, isn’t it? You might think that, but MS has a trick unique to nerve illnesses, we can feel both, in the exact same spot, at the exact same time. Internal feelings have nothing to do with the real world. If you apply moments though the danger of numbness is real. Burnt hands from an oven, fingers from a cigarette, cuts that you don’t know are there, that fester before you spot they exist. Food and drink that falls from your mouth as you don’t really know if your lips are closed or not, as you can’t even feel them, or the food. Sensations matter, be it missing ones or created ones, if they aren’t exactly or even close to what they should be, they disrupt everything, create danger and generally, make life hard.

Last week, I described a bad spasm, bad, not because of what it did on the pain scale, but because it made my health all to visible, in a not too pretty way. Not all spasms are visually dramatic, many, like those who take sheer pleasure in stopping me from breathing, constrict, just below that pain level. To find a point, in any day, where either my diaphragm or my intercostal muscles, haven’t held that position, in the last couple of years, is hard. In that same period, I can’t say that for any other part of me. 2 years ago, I went days without feeling a spasm anywhere else. That was the point when my PRMS found my intestine, but still, the rest of me, I went days. When they came, well in comparison to my torso, I really didn’t care. They were there, they were annoying, but they didn’t last, and they didn’t hurt, beyond a normal cramp, or stitch. They were mundane and forgettable. Technically, a tremor is nothing more than a fast twitch spasm, yet when it comes to dramatic effect, back then, my tremors won hands down. The spinal twitch was the best, it swung my enter body, from my toes to my head, in sharp jolts, from side to side and still does. My hands before my chemo treatment, did a complete and expert impression of late-stage Parkinsons. Post chemo, they settled to odd spells, that never lasted long and I could hold my hand out in front of me, not steady, but not flapping all over the place either.

So why the requiem, because all of this, just like the need for my wheelchair has changed too, and in just as big and as solid away as moving my chair back into my life has. My first paragraph, well it laid out the glimmer of the facts. My legs were the dangerous factor, the one part that was partially fixable by adding my chair. A wheelchair doesn’t make your legs stronger, it doesn’t stop the muscles from collapsing, and you don’t have to be standing to feel it. You might not think you are using you leg muscles when you are sitting, but you are. Sit there and totally relax your lower body and you can feel the difference. When it happen unconsciously, it affects your entire posture and body. Suddenly, you have what are in all respects two long lumps of flesh with pins in them. They are closed off, separated from reality and feel just as dead, as they would be if you tried to use them to stand. When you are in a wheelchair, believe it or not, unless you are a paraplegic you use your legs in every push. Dead legs, make every push twice as hard as they are with your legs to assist. Now add into this, the fact, that that feeling of weakness, and even deadness, is now appearing in your arms. I now, especially at the end of a day, find myself sat in a chair that I couldn’t move without, but with little of the strength or movement required, to actually achieve propulsion. My foil now feels more like a folly.

Spasms are now stronger, but that isn’t what bothers me, it is their weaker cousins that are making life tough. Doing simple things like lifting my feet so they can sit on the rests on my chair, is now literally, a hit and miss process. My muscles jump, kicking away and far too often, into the foot rest. The precision required to place in where needed is almost gone, just as it is when I’m walking. My left leg is far worse than my right, and if I had to take more than a couple of steps, would without a doubt, trip me up. Just standing can be enough, to send it off in some kind of fit, twitching and flicking itself all over the place. At it’s worst, I don’t need to even stand, it just twitches unstoppable, and those twitches in my hands, are returning. If the worsening of existing and the return of the once fixed wasn’t enough, now I also have the vanishing voice. I haven’t mentioned it for a couple of weeks, but it hasn’t gone, it just comes and goes at will. I had to mention when I was at the hospital, as it chose Monday as a good day to vanish. At least my PRMS chose that day to show itself and its latest trick.

I felt all of this growing, just as clearly as I felt my legs leaving. My concentration on making life in a wheelchair work, for me, allowed me to, not so much ignore, but more, to put aside as secondary issues, everything else. I couldn’t ignore the change in my breathing, as yes, that too appeared at the same time. Clearly, something six months ago kicked my progression into high drive. I don’t know what, I just know that my body is falling into the abyss, faster than it has done since 2 years after my diagnosis. Then, Mitoxantrone was the answer, but that was a one-off, I was told then, that I could never have it again. It does so much damage to your heart, that they don’t dare do it again. So this time, I am on my own. I know Adam has seen all of this, just as I have, he would have to be blind to not have. Like the sweetie he is, he chose to respect my lack of discussion and the blind eye, I was clearly turning on it even in here. So now, I have publically joined all the dots, brought together the fuller picture, now I just have to work on living with the results.

Please read my blog from 2 years ago today – 13/11/2013 – Sharing the same space

My day was in a bit of a muddle yesterday, it seemed OK on all the main points and I even completed the shopping that is due to arrive this morning. I don’t know how or where it went wrong but I was……..

So far, so good

I really didn’t think that I would even get the chance to start writing today, but finding myself up and awake at 5:30 am, thanks to Adams snoring exceptionally loudly, here I am. Actually, it’s not fair to put all the blame on him, yes, he woke me, but my stomach was telling me that I needed the loo, so even if I had managed to shut him up, I still wouldn’t have been able to sleep. In other ways as well I am glad for that earlier start, although I doubt I will be saying that by this afternoon. It is just touching 8 am and I have shoved through everything I would normally do for twitter and managed to get myself ready, so whenever that Ambulance arrives, all I need is my coat. It’s really odd sitting here knowing that I have my makeup on and my hair done, and not just my normal bed head design that prevails at this time of day. I feel like a different person. The entirety of this post is going to have to be done in bits, as I grab a few minutes in between the final touches required before we go, and of course, dependent on when that is, and when we get home again. I just hope it won’t be too bitty.

Something really odd happened last night, not with my health for once, but with my hands. I have been wearing rings on nearly all my fingers for most of my adult life, but the center finger on my right hand had four completely stuck on it. The last one to go on was actually a stupid thing for me to have done. I knew before I even shoved it onto my finger that it was going to be a tight fit, but I have for some reason got rather large knuckles, which means that the even if a ring is too tight to pass over, it will still spin around annoyingly once on. When I pushed it on to my hand, I did so as a way of keeping the other three still. At first it wasn’t a problem, I could pull it off with difficulty, but it did shift. Then I gained weight, need I say more. For at the least, it has been there for 9 years, but possibly longer. I don’t think I have lost weight suddenly, but for over a week I had noticed that my other rings were spinning more freely, so I grasped it and pulled, why it came off I don’t know, but off it is. I know this is a dipsy suggestion, but, could the fact I am using my wheelchair mean that my fingers are losing weight, if not the rest of me? It’s just an idea, but it’s the only one I can think of. I haven’t seen them for years, but I am sure they will be online somewhere, but I really need to buy some ring guards. They act like a spring fitting and let the ring pass over my knuckle then jump tight, holding the ring the right way around.

10 am. I really didn’t expect this, but we are home! Hospital visit complete and without the slightest hitch, if only it was always like that. We arrived at the hospital and were seen within 10 minutes of the ambulance drawing up. The doctor was really nice. She looked not just at the one I was worried about, but several others that are on my back and one that is on my chest. Apparently, I have Atypical moles. So I was right to be concerned about it, but in this case, there is absolutely nothing to worry about. She thinks that what has happened is that it had a slightly raised edge, and that edge was caught on something and been literally lifted it off my skin. Which made no sense to me at all, as I never wear a bra or tight clothes. I am also very careful about how I scratch my back, I have in the past caught moles with my nails. The more I think about it, the more I think I have the answer. Like most people, when I first lie down at night, I shift myself side to side until I am comfy. I am guessing, that that side to side shifting has been slowly lifting it off my back. Neither Adam or I thought about it at the time, but I have been left with the concern that it is actually going to continue separating itself. I have the horrific idea that one day I will wake to find it left on the bed behind me. She did say that because my moles are Atypical, as in they have raised sections and lumps in them, that we need to keep an eye on them for any changes. The fact that I don’t go outside isn’t enough, unfortunately, it is another one of those age things. At this second, we have nothing to worry about.

I couldn’t believe how smoothly the whole thing went, not even the stair-climber was as violent as usual. We were down and back up in a fraction of the usual time and I didn’t feel sick, not even for a few seconds. I know that it was only luck, but when we returned to the room where you wait for your transport home, the crew that brought us there, were still sitting chatting to the receptionist. They were waiting for a patient to come down from one of the wards. One quick call to their base and we were also on their list to take home. I had been so prepared for the fact that we would be sat there for hours, that I was sure that any second they were going to get a call back saying they couldn’t take us on the that run for some odd reason. But, no, we were off and home within minutes, if only it could always be like that. Fingers crossed, our next trip at in November will be just as smooth.

Over the last couple of weeks, I know that there have been quite a few people concerned about me due to this blog. Firstly, please don’t worry. What I have been writing in here is my inner self, my gut reactions if you like to life. I am very aware that lately my writing has been on the dark side, this doesn’t mean I am slipping into depression. When you have led a life like mine, there is a lot of darkness boxed all over the place. In normally work on them privately, but as this one is 100% about my health, it felt right to put it here. After all, the whole point of my blog is for the absolute truth of what chronic illness does to someone. It doesn’t matter what condition you have, the physical effects of them, is less than half the story. There are so many emotions that go with it, and I hope that they have all been shown. It is one of the reasons that I began to write this. You can search as much as you like, but nearly all information available about chronic illness is about the symptoms. Even then, the majority of them only tell you the basics of them. I wanted to know how they felt, what they did to your life, the true impact, not just their names. If you read back to the beginning, you will find spells like this showing up throughout. This one, though, I admit, is deeper and darker, but the phase I am moving into is the darkest I have ever had to face. Without a doubt, one of the dangers of chronic illness is depression. I have always believed that the fact I am so aware of the dangers, having had it in the past, that I should be able to control it. I don’t doubt there will be spells of it as things progress. The idea that I can go from where I am, to my final destination without it, would be ridiculous. I doubt being bedbound, will be a bed of roses.

I have made a point of always working through whatever my brain decides has to be faced. The worst thing I believe that anyone can do with anything, is box it and nail it down, that is the start of all danger zones. Yes, I do box things, we all have to, but I never put any nails in anything. My mind is free to demand that I deal with anything whenever it wants, just as it did the other day with that unwanted image. I also make space most days to deal with those thoughts I packed away for when I had time, I make that time. It’s a couple of years ago now, but I spent several months, just going back over my life and dealing with all the anger, I had inside towards people who had hurt me. I am not the sort of person who finds it possible to hate, no matter what anyone has done to me, I just can’t do it. I can, though, get angry and I had to get rid of it, that’s just what I did. I even forgave them all while I was at it. For me, it was the best thing I have ever done, that didn’t require either money or activity, and I would recommend it to everyone. Peace of mind is a precious thing. Dealing with all that ancient junk, also somehow how, helped me adjust into my new life of being unemployed and housebound.

I have gone from independent to being in need of total support, including life support. Without my wheelchair to get me around, well I would need 24/7 care and too close to bedbound for my liking. Without my nebulizer and my other inhalers, which all have to be used at least twice a day, I would find breath harder than anyone wants. Without being able to breath, well, we all know the answer to that. Mentally, it is actually a bigger adjustment than any of the physical stuff that goes with it. It is both easy and stupid to say, just get on with it, what is the big deal. My first time round using my wheelchair years ago to get around outside and in the office was a get on with it type of situation. I could deal with it with ease, as I saw it as no more than jumping in a taxi, to get me from one end of time to the other. I got in my wheelchair to get me from one end of the building to the other. But in small spaces, or at home, I was still able to walk as my problem then was fatigue. This time is different. This time, I don’t have legs any longer that can hold me up, they collapse, disappear and leave me stranded. This time, I am no longer a complete and normal person to look at, no matter who sees me now, they will see someone in a wheelchair. That is me, that is my new normal and that is a huge mental shift, and all of that has to be in here.

I know it is painful and heavy going for some to read, but I hope one day that someone like me will be able to read it and say, “I too can get through this”, that is the point. Right now, I believe that I am stepping through all of this quite well. I have thought several times, this it, I am there and I am myself again, then my brain disagrees and bang, I’m back walking through a forest, where every tree has thorns. It’s up to my brain, not me what you’ll find on these pages, every day is an unknown adventure when these pages are opened, not just for you, but for me as well.

Please read my blog from 2 years ago today – 19/10/2013 – Finding hope

I have always had the misconception that life was actually meant to be simple, I don’t know who told me that or why I have managed to got it so wrong, but still to this day I have a small section of my mind that won’t let go of that wonderful but oh so wrong…..

One week on: The visit

The MS nurse hadn’t been here 5 minutes when he said just how much he could see the change in me. He is the second medic in under two weeks, to have said out loud that my health is visibly failing. I along with half the world refer to nearly all the conditions that I suffer with as invisible, clearly they are not. I had made a point of heading to my bed early yesterday afternoon as he was due here at 3 pm, a time that would normally find me in bed, I at least wanted to be sat up in the living room not lying in bed when the doorbell rang. Adam had taken the day off, so by the time it did, I was sat on the settee, with my chair parked within reach, just as it has been for the past week. Despite the fact that the whole purpose of Adam being here was to get to meet him and to listen to all that was said, he had hung around in the kitchen for a few minutes after he arrived, before joining us. Our discussion centered around the chair and why I had decided to use it to begin with then moved onto all the other aspects of how things had been in the past year. It is actually 14 months since he was last here, but clearly he was shocked by the change in me, as he returned to it several times.

So far, Adam and I between us have managed ever aspect of my care, but neither of us, especially me, know that the time that outside help is getting closer. The system in the UK at the present means that we will have to bring into our lives some people that I have a great revulsion towards, social workers. My feelings run deep as they have failed my family and me repeatedly over the years. Firstly when I was a child and I was removed from my Father’s care, firstly at his bidding, until they discovered that his claims of a teenager out of control weren’t the truth. The day that he called them in, I bore bruising, a broken nose and four fingers that had to be pulled back into joint when they took me to the hospital. He wanted me out of there, they didn’t want to leave me for a second longer in his care. So why my hostility, well after just over a year of living with a lovely Dutch couple, I had to move on as they didn’t feel they could cope with a teenager and a new baby. Looking back, I can fully understand that, but I was placed just aged 14 in the YWCA, with little support and no one to turn to. I felt abandoned with no one and nothing. The second, well if you want to understand that, I suggest you read this post, “Christopher”. Bringing in the very department that has failed me so totally in the past, does anything but fill me with joy.

Social workers are the only people who can firstly assess and secondly supply us with access to the funding to pay for the care that we consider is needed. They don’t fully cover the costs, we would also be means tested so they could access just how much we would have to pay towards it ourselves. Once assessed it is up to us how we spend that money. We can give the budget back to them so that they can simply supply us with carers to cover my needs, or we can sort all that out for ourselves, with the budget paid into my bank account. Something that right now, I quite honestly don’t know which would be our choice. I was perfectly honest and said at the moment, I don’t think that any outside help is needed, but I am also aware that that time is getting closer and I am open to the fact, if not the whole process, quite yet. He suggested that it might be a good idea to get the ball rolling, rather than wait for a crisis, which I agree with, but as I said, I know it is coming, but I also know that it is still months away, not just weeks. I believe that I will know myself when I am reaching that point, just as I knew that I had to make the move to my wheelchair from my feet. I am under no illusion that it will take several weeks to organize, rather than just a couple.

I hadn’t realised until the three of us were talking about all of it, that Adam had it in his head that he was going to be more or less forced by the state to give up work to care for me. Not once had he even voiced that idea and I don’t even know where he got it from. I was really glad though that he did so when there was someone else, other than just me, sitting there to tell him to get that idea out of his head. I honestly didn’t realise that he was picturing our future as him being my sole carer 24/7. My confusion was even more so as we saw the system in action when my friend Jake was caring for his father. Jake was at home full time, but that was due to him having a breakdown following the death of him Mother and the discovery that he was adopted. We had actually even been in his house when the carers arrived to put his dad to bed. So he had seen that outside care was there to help with anything that was required. The only difference was that Jakes dad got the care for free as he was over 65, an age that despite feeling it at times, I clearly haven’t reached. I just wish that he had discussed this with me rather than wondering around worrying about it. It must have been like some kind of monster hanging over him. I tried to ask where he got that idea, but he brushed it aside with his usual answer, that he didn’t know and as he is my husband, he just thought that was the way it would be. If nothing else came out of yesterday, I am at least glad that he is no longer thinking his future is to be tied to my side, alone.

As I had expected the nurse wanted to know just how my mood was. I knew it would come up, just as it has every time before, but with the move to my chair I was sure it would be discussed in more detail. It was at that point that I handed over partially to Adam, as I felt that if it came from him rather than me, then it would be clear I wasn’t covering anything. I can understand just how it has become an area that health professionals feel is an inevitable outcome of having a chronic illness, especially with my being housebound as well. As it always has, it turned into a conversation on the virtues of being online and blogging. With Adam being here, it actually was the first time though that I had the opportunity to sing one other value of blogging, the positive impact when it comes to marriage. I know that Adam, like many other husbands, worries about my health. My blog though has freed up our lives to just be like any other couple. Without it, Adam would be coming home from work wanting to ask so many questions, and I, like anyone else, wouldn’t be telling him everything. His constant questions would drive me nuts and my silence on the details wouldn’t be because I was hiding anything, it’s just that I wouldn’t think something to be worth mentioning. Here is the perfect solution. My health doesn’t dominate that precious time that all couples spend together. I write, he reads, simple, and we’re free to just live.

Finally, we had a detailed conversation about my wheelchair. I had to be direct about it, as although I had already told him how difficult I was finding using it in the house, he had swiftly moved the conversation onto other things. So I asked him directly about getting an electric chair and from Westmark, which is the department in Glasgow who deal with them. He didn’t realise that my chair was supplied by them as he thought it was far superior to their usual ones and that we must have bought it. I knew it was special, I had been given it in the first place as I didn’t have great strength in my arms so it was a special lightweight one, not the bog standard one. We went over the problems that I was having, how my arms were finding it often almost impossible and my hands were now almost constantly in pain. I also told him something I hadn’t mentioned to Adam, it is also causing problems with my COPD, I am getting breathless with it. Not to mention the problems I have with bruises and bleeding knuckles. All those details that I have been adding to my list of problems, everything that I felt were the reasons why an electric chair would change my life. This was the moment my first week in my chair had been leading to. He isn’t that hopeful that they will give me anything better. He said that in his experience, if you can move the manual chair at all, no matter how much pain, or how difficult it is, you won’t normally get an electric chair. He even thought that moving house would be an easier option, one which I explained wasn’t a possibility that we even had. Once again I told him what happened with the housing authorities that supply housing for the disabled. Because we own our own home, we aren’t entitled to any help, yes we can be on their lists, but we will never, make it on the points system to a level, where we would be offered a home. He wasn’t sure if he could do it, but he is going to find out about referring me back to Westmark, and what the possibilities are.

What happens now, who know. At least Adam has met and made contact with the person who is our information person, so he can turn to them when needed, if I can’t. I feel as I always do after one of these meetings, it has cost the NHS money, but it is the first and I am not joking, the first one that has had a point to it. Normally, it is just ticking boxes and I’m not sure what other purposes it has. Just as last time, he said that I knew more about MS and the system than even he did, a statement that says everything about the system I have learned to live within.

Please read my blog from 2 years ago today – 23/09/2015 – Exploring is no longer possible

It is strange how two days right next door to each other can actually be so different, yesterday passed without not once wanting to head off into the kitchen to grab yet another dose of Morphine. I wasn’t without pain, that really would have been asking too much but life was just as it normally is, pain but pain at a level where…..