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…..

A Hospital issue

Last night, I climbed into bed, tired and more than ready to sleep. The TV schedule on a Saturday, are constantly shifting, so I was a little later than normal, that, though wasn’t the reason I was so tired. I have been finding the last few days draining. When my mind doesn’t want to shut up and only full on distraction seems to be of any aid at all, my strength fails quickly. Despite going to bed as always in the afternoon, I don’t think I actually slept. I just lay there, with stuff flying in every direction in my head. When I was once more back in the bedroom, ear plugs in place and the last scraps of light blocked out by my mask, I feared that the night was going to mirror my last visit there. When I had been getting ready for bed, almost as soon as I entered the bathroom and distraction vanished, I found myself thinking about the final paragraph of yesterday’s post. I kept wondering if I had written the final sentence correctly. Was it fine as it was, or should I have actually worded it slightly differently, so that it ended with a question mark? Once in bed, I was almost decided that I should change it, as it is a question, will I be able to just accept, or is that more a blind wish. There was a tear running down my cheek, this was the first time in my life, where I was seriously facing my own mortality.

It’s easy to say, we all have to die and to sit and think about when and how ours might happen. That isn’t facing your mortality, that is admitting it, facing it is a totally different thing. Just like that image that appeared, so did that tear, without permission or thought. One tear, not the flood that you might expect, just that one. Tears won’t change the fact, or make it less painful, but it’s not the type of pain that requires them to flow. It was odd, I wasn’t happy about what I saw, or the fact that it is approaching me, but there is an acceptance already there that I don’t actually remember either giving or working on. Tears would be appropriate if someone suddenly put a gun to your head, as that isn’t what any of us expect, our mortality would then be imminent, mine isn’t. It’s still out there in the future, what has changed, is that it is in sight, that’s the only, but a really big change, it now has a tangible reality. Just as I know that the time where I will need more care, someone to come in and assist me to do things that Adam can’t or I don’t want him to, is closing in on me, so is this. Yet, it still feels like yesterday, that I was working, going out every day and living like everyone else. Yesterday, I got angry because my day had run away with me, and there was suddenly not enough time left in the day, to do all I had planned. Adam said something along the lines of “who cares about the hours, it’s the years that worry me”. I corrected him by saying, “No, it’s the hours that matter, the years take care of themselves”. The truth in that statement felt and still feels starkly real, the years will take care of themselves, as I won’t be able to take care of them.

Today, though, is about getting both mentally and physically ready for tomorrow. No, that isn’t some kind of statement that links in with the above, this is something totally different. Once again, I’m on my way to the hospital, at least this time, I have the novelty of visiting a different department, I’m heading for Dermatology. A few weeks ago I wrote a post in which I explained that I had found a mole on my back that was doing something rather odd. I had emailed a photo to my doctor and he doesn’t think that it is anything to be worried about, but that due to the change, it should be checked anyway. So once more, I am heading for the hospital and today, I have to shower, wash my hair, tidy up any that needs removing and generally get ready for being out of my bed an hour early tomorrow, which is when the real fun begins.

To anyone else it wouldn’t be a problem, to someone like me, the whole thing is an unwanted nightmare. The last time I went, I was lucky, I don’t think the Ambulance crew thought so, but I was delighted when there was no stair-climber available. Trust me, being carried in a chair, by four people, up and down six flight of stairs, is a hundred times better than that monster of progress. If you don’t like fairground rides, you too would hate the stair-climber. It’s violent rise and fall action, that pushes your stomach into your mouth, is enough to upset most people, and part of the reason for my early rise. I am lucky enough to have a supply of anti-nausea pills, I have them as nausea is, unfortunately, another symptom of my PRMS, but the tablets do take a little while to work. With the Ambulance possibly here as early as 8 am, I need to be dressed, fed, drug program completed and even my hair and a little makeup added for vanity. Yes, I do have a little of it left. It is going to be a long and tiring day, and like all the rest it is going to take me a few days to get over it, and that is if it all goes to plan. Our unfortunate experience says that it is quite likely going to do anything but. We frequently find ourselves through the doctor side of the day with ease, it is getting transport home again that makes it such a drain. Hours of just waiting, sometimes right into the evening, isn’t uncommon.

I just remembered to plug in two E-cig batteries so they are also charged and ready to go, the first tick off my to-do list. The last two times I have been out, I totally forgot about them. I have had to charge two batteries, not because I think we are going to be out long enough to use one, but because I haven’t used them for ages, I didn’t want to take the chance that one might die. All the hospitals in Scotland, now have a policy that says that you can’t smoke a real cigarette, anywhere within their grounds, not that anyone really pays any attention. Adam is perfectly happy to wheel me outside to where all the other illegal smokers stand, but my nicotines levels dip quite quickly, a side effect of constant availability at home. Here, sat in my home, I don’t need to worry about charging and all that fuss. I use one that works off a USB, so it always works perfectly, but not much use anywhere else. If there is one place that a nicotine addict needs their drug, it is sat waiting and waiting in a hard hospital wheelchair, no, I’m not allowed to take my own. Rules, rules, and more rules. I’m waiting for the day to arrive, when you have to take a test, just to be allowed in their precious property. At least we have managed at last to get them to bring Adam with me in the Ambulance, they have at last accepted I need him with me.

On one level, I fully understand why patients go to see their doctors, rather than the doctor coming to see them, but on another, I don’t get it at all. To get me there and back again will take two, possibly four, if the stair-climber isn’t available again, with between two and four Ambulance crew, twice over at this end. The cost of that alone isn’t cheap. Clearly, if tests need to be done, then the patient must go to them. But a lot of the time, it is a chat without even an examination, which could be done over the phone, and if an examination is needed, then the doctor could actually go to them. The hospital is a ten-minute walk, or more likely, a two-minute drive from my flat. The doctor with a nurse for security, could in one car, be here and back in under 15 minutes. If a patient can get to the hospital, without transport having to be laid on, all is well, but surely it would cost less if they had a monthly list of those who are not able, to which the doctor could be the one making the visit. Especially, if the impact of going out, is detrimental to the patients health. I know that would take joined up thinking, but if it makes sense to me, how come it doesn’t make sense to them? Isn’t it time that the NHS used joined up thinking and started to use things like Skype, to cut down cost and improve patient satisfaction. Yes, you can smash tradition to bits and start again!

Clearly tomorrow I don’t have the slightest clue if I will or won’t have time to write a post. Don’t worry, I will be back on Tuesday if I don’t, just remember where I am and don’t worry about me, I am fine.

Please read my blog from 2 years ago today – 18/10/2013 – Shifting the focus

There are always day when strange thoughts and feeling seem to take over, ill or not, I know that the human mind has a huge capacity to to invent and create things that should never have been there. I have always been that individual…..