Teach me before it’s too late

I am sat on my not used for a very long time blow up cushion. After four days of taking the laxative liquid that my doctor prescribed to work with the Lactulose nothing had happened, apart from a very disturbed nights sleep where I kept waking with the pain of things moving but going nowhere near where I wanted it to go. I even woke up pouring with sweat and feeling terrible, but despite it all nothing other than that I could feel it all sitting low inside me, so I decided to attack it with a suppository, bad move! Well not totally true, it did get things moving, but it also started a run of spasms in a place I haven’t felt them for quite a while now. In the past it has subsided in a few minutes like most spasms, but this one, well it just doesn’t want to let go at all. The pain is so strong that it is impossible to sit down without the aid of my cushion, actually that isn’t totally true, sitting on the loo is wonderful as it puts no pressure on the muscles in spasm at all. Sitting when it feels like someone has grabbed all of your tail-end with a large set of pincers, then twisting them and refuses to let go, is not my idea of comfort, unsurprisingly I am just waiting for the Morphine to kick in. It is one of the few spasms that just doesn’t seem to like most to break by applying pressure, logic says that sitting would be the best thing possible, but the second I try it, I am on my feet again. I can only guess that it is actually deep inside me and not as close to the surface as it feels, when your insides go into a tight spasm, it can be extremely difficult to deal with them, it’s second only to on my list of horrid spasm to those in my diaphragm and intercostal muscles and only lower on the list as it doesn’t happen so often. It can be easy to fall into the false situation of thinking that spasms only happen in the muscles we know exist and use daily with knowledge, where ever there is a muscle or a nerve, PRMS will find it and play with it until it gets fed up and moves on.

Adam came home from college and went out almost straight away as my prescriptions had arrived from the doctor, so he headed out to the chemist to get the final parts of the delivery system set up. As we thought, all we have to do is phone them and let them know that I have an ad-hoc prescription waiting to be picked up and they will arrange the rest of it, but I did once again manage to get myself wound up about one small silly point. When Adam handed over the prescriptions, he was told that they would be delivered on Monday and if they found anything needed ordering they would order it in them, delivering it when it arrived. I don’t know why, but I hadn’t thought about there being no deliveries at the weekend and for the life of me, I couldn’t understand why they would be waiting until Monday to order anything that they didn’t have and it was a point that I couldn’t let go off. When my mind locks on to something, it seems to take a long time for it to be willing to let go of it again, it wasn’t Adams fault that he didn’t think about questioning that point, it just didn’t occur to him as important, but every chemist I have ever dealt with orders drugs in the second they get the prescription. It put this huge doubt into my mind about the whole thing and I couldn’t stop myself from going on about it as though it was his fault. Once I realised, I apologised as I already knew that he was somewhat wound up about something else and all I was doing once again was piling pressure on him for something he had no control over. Luckily, the chemist also phoned us to question one of the items that they thought didn’t look quite right, they were correct and it put a lot more faith on my part in their ability to live up to the service they were offering. In the last few weeks, I have been doing exactly the same thing over and over again about all sort of things. Clearly, as I keep find myself writing about different instances of this, it is something that I am truly sorry for doing and truly unable to do anything about at the second it starts. I have been racking my brain, trying to find out just what is causing my outbursts as honestly, they don’t normally happen this often. All I can come up with is that in the past few months, our lives have been nothing like normal, it has been a constant change and upheaval. It’s not just my health, we have had to deal with and buy a new fridge, TV, skybox and the suite recovered, this means a trail of shopping around, deliveries, house upheaval and the normal stress that goes along with all of that. Also, Adam has had a lot of time off so far this year as he had to use up his holidays before the end of April, which again has thrown routines out and confusion on my part as to where he is and what he is doing. We are also still working on sorting out all the that happened at the end of January, nothing this year has been normal and thanks to my pain levels being raised by my lack of bowel action, I haven’t been getting my full nights sleep every night now for months. I honestly think that all that is happening right now is my brain screaming for peace, to be allowed to just veg out at the back of my skull and not be used again for a while. Unfortunately, that isn’t going to happen anytime soon, well at least not until we have been to see the doctors in the Gastrology department again.

At times, it is easy to forget just what my body is going through and how one little change can put me into a tailspin, all of the above is enough to send me not just spinning but could have easily sent me into the biggest crash I have ever had. I know I am hard on myself at times, but to me there is no excuse, brain damage or not, to put anyone through the third degree just because their brain doesn’t work the same way as yours. Adam knows I don’t do it on purpose, that it is all too often my pain talking and my brain failing to engage as it should, he tells me over and over not to say sorry for it, but right now, that is all I can do, I just fear for what the future may hold when I don’t know later what I have said and how I said it. I have seen in plays and documentaries on Dementia, Parkinsons and Alzheimers people who either say the most incredibly hurtful things without knowing they have or out of frustration start to hit out, I fear that either might be our future, but I don’t have the slightest idea how to avoid it. I just wish there was some sort of training that we could both gain from that would help us deal with what is happening today and what might happen in the future as I don’t want to keep hurting him as I already do and I definitely don’t want to hurt him in the future in any way either.

No one teaches us how to deal with being ill, far less how to deal with someone or even ourselves when our health has made us totally irrational and unreachable at that moment. I know there are some people who don’t understand how I manage, how I stay so positive or even how I have accepted what is happening to me, all of that I have found easy. What I don’t find it easy is accepting a future that means not only the loss of all that, but also the loss of me, without there being some kind of way of bringing me back and stopping me from hurting mentally or physically, the person who I love.

Read my blog from 2 years ago today – 14/03/13 – Relationships with Love > http://bit.ly/ZK9CNq

Having to work in a different order today as I don’t know when the ambulance will be, it could be any time after 11am which will cut my day right through the middle. So it has to be writing first today and fit the rest in where I can. I have done what I was asked to and had a lighter breakfast than normal and…..

A rather smelly nudist

I am on my own today, Adam isn’t back at work, that isn’t until Monday but as today is Friday, he is at college. I am really pleased that he is doing something that hopefully will give him a better job eventually, like many people including myself, who left school without any silly bits of paper saying we have a brain, he has felt held back by it, getting this HNC will make the world of difference to him. For me it wasn’t getting a qualification that made my working life change, it was me realising that if I wanted something I had to show I could do it and if that meant I had to work every hour that god gave, then that was what I did, yes even without pay. Every time I have ever wanted something from life, I have just gone for it and not only grasped with both hands any rope that was there to help me along, but I also never let myself believe that anything was impossible. I got rather good at bashing down doors and making the world let me in and getting what I wanted, but it wasn’t until I reread my post from yesterday, that I realised that I was laying out another battle, one that clearly has been annoying me for a long time. I also realised that for the first time, I was looking at something that I haven’t the slightest idea what to do about it. How do you bash down doors when you can’t even get to them?

I have spoken many times now that part of my writing and being online was originally to raise the profile of people living with chronic illness, not just MS, but any of the myriad of conditions that millions have to live with and how they all impact on our lives. Like many other things in life, I have found myself preaching to the converted a lot of the time, but I also know that I have made some who have never thought about it at all, what reality can actually really be like. It doesn’t matter what issue it is that I write about on any given day, there is hardly a day where someone doesn’t chirp up on Twitter to say either, “I know this, because I live with it too & I thought I was alone” or “Thank you, I now understand my Mother/friend/partner” or “I never knew, thank you writing this”, but how do you pull those sides together and keep them there working together to make things clearer and better for all, when all your strength is taken just writing about it. I so often feel that I am doing the one thing I have hated all my life, talking without doing, but I can’t change the world on my own and I totally don’t know how to from my living room. All I can do is to keep chipping away and just hope that one day the right person will read what I have written and will be able to start bashing doors on my behalf and shoving my words in their faces until the people with power have to change things. Nothing in life is simple, when you are housebound, trust me they became a thousand times harder for a thousand different reasons and if you don’t believe me, keep reading.

I woke this morning with pain in all the normal places and a great desire to get up, get dressed and go for a pee, it was as I was getting dressed, that I really began to notice all truly all the different point of pain. There is one act in life that is always going to be my least favourite, getting dressed or undressed. When you are fit and healthy, you really don’t think about all the different positions we have to get our bodies into to, to just cover it with a layer of material and none of it is easy to achieve when there is pain everywhere. I also know that any time I mention getting dressed that Adam will offer to help me, honestly, well I know we have never tried it, but I don’t have the slightest doubt in saying this, that would make things worse. Just like getting dry after a shower, I know where my pain is at that very second, which means I know the position and the pressure and speed that I can achieve without making things worse. I used to think that washing and dressing was something that I wouldn’t want assistance with, simply because it was somehow too personal, but it isn’t that at all, well maybe very slightly, but it is far more the pain issue that keeps me refusing his help. When I look at all the things that my health has a head of me still waiting to happen, this is an issue that I can’t see a way around, but one that we all have to do, unless you intend to spend your later years as a rather smelly nudist. It doesn’t matter how I look at it, or what clothing there are out there, we all have two arms and two legs that will have to be manipulated so that they can be covered up and we all have to be able to bend and stretch our bodies so said arms and legs can be clothed or washed and dried. What will work one day, will probably not work the next, in fact, as anyone with a condition anything like my PRMS and Fibro will vouch for, how you got them on, isn’t always going to work in reverse when it comes to taking them off again. I gave up buttons, popper, hooks and eyes and zips along time ago, everything I wear has either got a large amount of lycra in it and/or is so big and soft that it should prove to be no problem, but even all that isn’t enough.

It’s another one of those things that seems so wrong and I never understood until I found myself where I am right now, just why so many people seem to wear such odd clothing, especially a lot of people who are in wheelchairs. When I was in my manual chair, I was still lucky enough that my PRMS was spending most of its energy working at either end of my body, yes I could still dress for the office, but I also made a point of wearing the same outrageous clothes I always loved, thighboots, mini skirts and skimpy tops the rest of the time. Now that I have pain everywhere, well I now understand that fashion, likes and dislikes all go out of the window, comfort and ease of access are all that matter. If I couldn’t understand such a small thing when I already lived with a chronic illness, well what chance do those who don’t, it’s a little thing, but if I didn’t get it, what chance do we have in a world where people judge us on our appearance. I hate to think what someone who was interviewing me for a job would make of me know, well I don’t have to think, I know I wouldn’t get a job no matter what it was, looking as I do now. It is another of those things that unless people know, the way we are treated will always be wrong and not because of anything we have actually done, other than to make the best out of a bad lot.

Unless I won the lottery, when I could employ a designer to work on making me a wardrobe of clothes that not only could I put on with ease and I actually liked, I know there is no chance of ever feeling part of the world, outrageous or not. Clothes define us more than we like to think, for 6 years I haven’t worn a single item that has made me feel good about myself, it’s part of the reason I have an aversion to mirrors and I know without a doubt there are millions in a similar position, many still out and about in a world that laughs at them, just because of how they look and with any comprehension of the truth, another wrong that needs to be made right.

Read my blog from 2 years ago today – 13/03/13 – Now or Later > http://bit.ly/YarzmJ

The start of another day, and it all seemed just all to normal. I have said repeatedly that I hate that word as it normally refers to what is average for the population as a whole, but when it comes to my health at any given point in time, there is no other word to use. Today is normal, not your normal, I will agree but that is the problem, we all too easily…..

Shutout

When I was writing my post yesterday, I let everything about the day before just pour out of me as I wanted rid of it and to simply move on with yet another change in my life but ready to adjust and get used to it, well that was the plan. Part of what I had to do yesterday was to sort out all the bits and pieces needed to set the prescription delivery service up and running in the hope that it is going to remove one hassle from my life at least. It meant I had to make a phone call, but that was clear in my head what I needed from them and to find out what they needed from me, simple. I had only found one company online that was working across Glasgow, which had surprised me as this is the biggest city in Scotland and one of the biggest in the UK, but all I needed was one company. I am sure that you can already guess that that didn’t work out at all, they don’t cover this side of the city and they couldn’t help me at all with the name of a chemist who did, all they could suggest was that I went to the main street in our area and checked with the chemist there if they could help, not much help when you are housebound, so it was back online and back to my search.

I couldn’t find anything that was actually in Glasgow, so I decided to try the big boys who serve the entire country and on first glance it appeared there were several there that could help, that was until I started to fill in their online forms. One by one they fell apart, none could cover even the simplest things, most are based down in England and wouldn’t accept the fact that prescriptions in Scotland are free and they wanted full payment for each item. I found two that could deal with the country difference but when it came down to it, it turned out that they couldn’t deliver restricted drugs as in Morphine or MST, they would need to be collected from one of their local stores, not what the whole thing is about really. I actually thought I had found the one and only company who could help me but there was an issue on their website and I couldn’t manage to get the details required on to the site, so I sent them an email with the details of what I wanted and went to bed for my nap. Despite the fact that I was late in actually going to bed, I couldn’t sleep. My mind was running a hundred miles an hour and all I could think of was the frustration that was going made inside me over sites that didn’t work, people who made promises but had hidden reasons for breaking them and the stupidity of a world where being housebound meant you where the exact type of person their service should be helping, yet they couldn’t help the very people who needed them the most. Once again, this was turning out to be a service for the fit, healthy and lazy, not the ill, disabled and desperately in need of help. The most annoying part of it all, the fact that once again no one could actually put together a website that was simple and straightforward enough that you don’t waste hours filling things in, in the belief that this is what you are looking for, only to find at the last minute, that you couldn’t use it due to a hidden rule.

I had been lying there for about half an hour when I heard the phone ring, well actually I wasn’t totally sure if it was as I had my earplugs in as normal, so I quickly removed one and listened. I could hear Adam talking and I know his telephone voice so well when it comes to him talking to someone he doesn’t know, I guessed it was the company I had emailed. Luckily he was still on the phone by the time I was dressed and in the hallway, so he handed the phone over to me. Their company although in England didn’t have a problem with my being in Scotland or our free prescriptions, but they did have a problem with everything else. For them to deal with my prescriptions I would first have to get the doctor to post to me my prescription, they I would post it to them, then they would post the drugs to me, minus the restricted ones, all said with the bubbly voice of a sales person, she didn’t get a sale. Adam then took over and said he was going for a walk and he would go into every chemist he could find until he could find one who could help. He came home quite quickly actually, the second one he entered was more than happy to help and he returned with all the simple details require to get the whole thing up and running. I have to admit that I am just waiting for something to go wrong, but we at least can try it, I just need to call the doctors today so that we can start the whole thing going by giving them the first of the repeat prescriptions and hand that into them, along with the signed forms.

This whole thing is yet another example of what I have been seeing now for a few years, the world really isn’t set up to deal with anyone who is off grid in any way, be that simply being a wheelchair user or being housebound. We are such a minority that even those who we believe are there to help us, don’t even consider the fact we exist. First there are the Doctors who can’t understand that a medical problem that may not seem too important for a fit and healthy person, but totally destroy us and leave us so ill we can’t function. Then the hospital visits which leave you exhausted and drained for days, because your body is so ill, it can’t manage the simple process of dressing and leaving the house in an undignified manner of a stair climber, then waiting for hours to come home again. Dental care that is denied to us as the NHS will only supply that horrid stairclimber and an ambulance if you are visiting a hospital and won’t take anyone to their GP or Dentist, both which I see as medical. Web sites that you can’t place an order on unless you have the most pointless thing in the world for someone who is housebound, a mobile phone or can’t supply a delivery service as they only do click and collect. Companies who supply discounted items and services, but only if you can get to them and shops, restaurants and so on who don’t make the changes really needed to allow wheelchair access. Town planners who have never sat in a wheelchair and don’t understand that a camber on the pavement means you can’t go any distance in a manual chair without being forced by the slope into the road, or lower some curbs but not all, so you land up stranded without any choice but to backtrack and try a different exhausting route. Computer programs that should help us, but we can’t try before we buy, as there is no way of knowing if they will help without being able to test them and that’s before we talk about cost. Now there is also of course the latest edition, Chemists who will only supply a pickup and delivery for those who don’t really need it and those are just a few of the one I could list.

Being chronically ill, disabled or housebound means that life is already harder for us, but the thing that makes it the hardest are all the things we are excluded from, just because none of them even thought of anyone other than themselves and those like them. Being housebound you would think that these days the world is still open to us thanks to the web, it has made life so much more bearable, but it also is the source of huge frustration and for no other reason than a little thought. It costs almost nothing these days for businesses to make their services known online, yet here we are in 2015 and to find a company that can assist, still means being mobile or having someone else who can do things for us, it shouldn’t be like that.

Read my blog from 2 years ago today – 12/03/13 – Independent dreaming > http://bit.ly/YhElSD

Paul Gambaccini, the person who caused me so much distress yesterday morning, I remembered his name 24hrs on from when I needed it. I remember finding him rather annoyed and a reason for switching the radio off, may be this was some kind of revenge. At least I………

My trust is borken

Yesterday was doomed to being one of those days, it appears that almost everything I did turned out wrong. For those of you who find your way here daily through my links on Twitter may have though that I didn’t write a post yesterday, I did, I even sent out all the normal tweets both the one directed to my daily post and the more general one that leads to my blog page, for some reason I can’t work out, even though I did schedule them, they weren’t sent. So having found it so hard to actually even write the post and all the tweets as it was a generally tough morning for me, few other than those who receive an email alert, actually knew it was even there. I had struggled through the whole morning, not feeling well, plus being in pain but avoiding taking a booster pill as I still wasn’t sure that my prescription would arrive that morning. I was still in the middle of scheduling my other tweets when Adam appeared with an envelope, we both knew that it was the prescription I was waiting for so I opened it quickly just to see how many tablets had been ordered so that Adam could take it to the chemist. When I opened it, my ability to not see what is directly in front in me struck and it did it big style.

There were two sheets of paper inside the envelope, one was just a note to remind me to send them more stamps, but the other therefore had to be the prescription. I looked at it and on one side was a list of medications, not the ones I had ordered, in fact, there wasn’t any mention of morphine anywhere, the other side of the sheet seemed to be just filled with computer printed stars. I should say that I normally don’t even look at my prescriptions, I just open them and hand them over to Adam, I kept turning the paper searching for what should have been there but it wasn’t. Adam could see that I was getting distressed and came over to see if he could spot it but all I showed him was the list, as I was picking up the phone to speak to the doctor and find out what had gone wrong. Luckily it was both Tuesday and it was after midday, the surgery was closed. I know that doesn’t sound lucky and at that second it didn’t feel it, I burst into tears and they weren’t just the shallow tears I usually get for no reason, theses were gushing and I could feel them as I was slipping into panic that this meant I was going to have to spend yet another 2 or 3 days waiting for the right thing to arrive and I couldn’t deal with that. The last couple of days, the pain had been really bad, but I wouldn’t take the tablets I still had, just in case it got worse and I was caught in terrible pain without the answer to it. As I sat there with my head in my hands and falling further and further into panic, Adam took it off me and looked at it himself. There it was, right there on the page covered in stars, it was the actual prescription and the details were there right at the top of it, I had had the correct prescription in my hands all the time. By nature, I don’t normally panic, I have always been so level-headed and able to deal with whatever appeared, but yesterday, I felt something that I haven’t felt since the last time I found myself totally lost in my own home. Even after he showed it to me, I couldn’t stop crying and I felt so confused and lost, how could I have not seen what I was looking for, not been able to read the line that mattered on a page I scanned from top to bottom, it made no sense to me, but it had happened.

It took me a while to realise why I was still crying, it was because this was yet another thing that showed just how fast and far I have slipped recently. Just like looking at a pile of tablets and knowing something had to be missing, but with no idea what, my mind had a dropped one of its voids over what was there for me to see and nothing was going to let me see it until it was pointed out to me. I may not have looked at my prescriptions for quite a while now, but I know exactly what prescription looks like and once I could see it, I could also see that they haven’t changed at all. I don’t think that Adam really knew just how much it affected me as he was in the kitchen for the worst of it making his lunch, I was sure that once he pointed it out and gave me a hug that that was the end of it, it wasn’t. I guess I was in tears on and off for the next half hour, but inside the feeling lasted a lot longer, I am now questioning everything that I am doing, everything that see, is it right or is this just another nasty trick of my mind, like all the others it take such pride in performing. Two things have come out of it though, first I am going ahead with the free delivery service that is available for prescriptions, if they pick it up from the doctor and bring the drugs to me, I never have to see another prescription ever again and should anything go wrong, well they can fix it, plus it will all be a lot faster. Secondly, well I don’t actually open very much of my mail anyway, I am one of these people who recognise the envelope or can see it is an ad and just ask Adam to shred it or the two or three I do open are scanned briefly and then it’s shredded with the exception of prescriptions. I’m not going to open any more letters, I am going to ask Adam in future to deal with it all, if it is something that I need to deal with, well he will be able to tell me or just shred it for me straight away, I really don’t need to be in that loop at all.

There were other small things that happened through the day, like not picking the phone up to call the company who can take over the prescriptions for me until it was far too late in the day to have any chance of getting to speak to someone. Or the fact I had noted that the number of people looking at my blog was tiny but not thinking once there could be a problem with my tweets going out, or that I needed to do a major rethink on the tweets I was sending as no one was responding to them, or just to look at my timeline either. I was so overpowered by what had happened over the prescriptions that I lost everything else as if my world had stopped for some reason. I didn’t need yesterday to happen, but it did and if I had needed any more proof that I am not in full logical control of my brain, well all this, was it. Even this morning, I am still feeling shaken by it, no, not shaken, shocked by it. I knew and had seen it all before in smaller ways, but yesterday’s wasn’t something seen only by me with the possibility of covering it somehow, this happened so bluntly, so dramatically and with a witness that there is no ignoring it. Without a doubt what I was already feeling is now a fact, I can’t trust myself and that is a really really hard thing to come to terms with.

Read my blog from 2 years ago today – 11/03/13 – Memory milestones > http://bit.ly/WYWQZF

With Adam on holiday this week I guess I am going to have to get used to him snoring loud enough to bring the walls down on the settee for the next 7 days. I have tried to make him go to bed but with no result, he sort of opened his eyes and snored, so I guess he wasn’t actually awake. I didn’t actually see him last night………….