The itch scale

Everyone knows the some of the major symptoms that go along with different chronic illnesses. The biggies like loss of balance in MS, or memory issues with Parkinsons, but quite often, it’s the odd little things that go with them, that really drive us mad. Everyone at some point in their life will have had an area of skin that just won’t stop itching, but there is nothing there to be seen, well those are the sort of things I’m talking about. Those annoy “itches”, that just don’t go away, expect, these aren’t itches. Right now, for me, my itch, is my throat. I mentioned the other day that I have a problem swallowing, well that is only part of the story. I have several issues with my throat, some serious, other clearly on the itch scale and I know that the other day, I made light of the subject and moved on, but it’s more than an oddity, it is a slightly scary oddity, annoying and often drives me right up the wall. I don’t know exactly what causes it, but sometimes, when I am just sitting and doing what we all do, breathing and swallowing our saliva without any conscious thought, suddenly, my throat just locks up. It feels a little like there is suddenly a vacuum that is so intense, that I can’t breathe, swallow or oddly even open my mouth without forcing it to. I don’t mean with my finger, just with my brain, it has to be a conscious thought. Otherwise, I go into this cycle of trying to swallow, as though I have something choking me, but I can’t and don’t need to cough, as there is nothing there.

The first time it happened, I admit that I was scared. I honestly felt as though I couldn’t breathe and I wasn’t going to be able to take another breath. Everything was locked, set as it was and unchangeable. Sometimes, I can’t get rid of the air that is in my lungs, at others, I can’t find fresh air to fill them. It always feels as though the tubes to my nose, have closed, not as the feel when blocked, no, this feels as though they are sealed. There is a sensation similar to a vacuum in my mouth, it is so tight, that I can’t break it and it stops me doing anything about it. Personally, I think it is some sort of spasm, that closes off the entirety of the back of my mouth, throat, soft palate and nasal canals. For a long time, I thought that all I could do was to keep on trying to swallow until the spasm broke, as it always did. It took time and was extremely uncomfortable to do so, and the longer it went on, the more I would begin to panic internally, but I couldn’t see any other way around it. Adam has seen me struggling over and over with the worst and tightest one, which still distress him, far more than they do me. I eventually worked out that with a concentrated effort, I could actually open my mouth and that if I took a sip of liquid, I could trigger the instinctive action, of swallowing, and break the spasm. Instinct can work with you, or against you, as it is instinct that makes me sit fighting with it, rather than just taking a drink. When you can’t breathe, instinct tells you the last thing you should do, is add liquid. As I said, at first, it was scary, now, it is one of those annoying itches, that I just have to live with. For the last couple of days, it has been driving me totally up the wall.

That one is big and dramatic, but ask anyone with MS, there are loads of smaller ones, and some, are totally identical to an itch. The hours I have spent scratching must be in the high hundreds, but unlike a real itch, ones produced by MS, doesn’t respond to anything. You can scratch, apply gallons of cream, or have a bath, but it still itches. I have on more than one occasion, scratched my actual skin off, only stopping when the blood starts to flow. You can’t help it, you just scratch and scratch, out of pure frustration. No one pays that much attention to someone scratching, but I’ve had more than my fair share of odd looks because, I’ve been continually & violently rubbed at the end of my nose, my ears or my hands. Twitches, go next on my list of annoyance. I’m not talking about the ones people can see, they usually don’t have any sensation behind them, the ones I’m talking about are actually purely a nerve signal twitch. I don’t know why, but it has always been my nose that does it the most and annoys me the most. Even though I know it isn’t moving at all, I can’t stop feeling a little bit like a rabbit, and fearing that what others might see. Even when I am alone, it doesn’t take long before I am angerly rubbing and vocally showing my frustration as I do so. Whilst I am on the subject of noses, there is one other annoying thing they do, although, I have to admit, this belongs really low in the annoyance scale, but my nose drips without any drip. Honestly, it can feel as though there is a droplet, just sitting there ready to fall, when theirs nothing there at all and just like the invisible twitch, they keep happening.

Finally, in position four on my annoyance list, are jerks. I know “jerks” annoy everyone, but it’s not that type of “jerk”. Mine are those sudden involuntary movements. Some can make me laugh, like when I’m sitting totally still and my hand or foot will suddenly flys up in the air, but when your entire body suddenly jumps, it’s not so funny. Like all the annoying things, they don’t all just happen once and vanish, jerks can repeat and repeat and repeat. Most people will have had those moments when trying to go to sleep, and their body suddenly jumps, waking them up again. Well, it’s not dissimilar to that, expect, I can be eating, drinking or doing anything at all. When they go into repeat, well I’m sure you can imagine, what that would be like 10, 15, 20 times in one hour. It makes life difficult. Go and search as much as you like and I promise, you won’t find any of these on a symptom list, but there very much part of my life and the life of millions of others. If I’m honest, they can at times be far worse than the spasms or any other officially listed problem, it’s just no one tells you about them. Just as everyone with MS, doesn’t have the same combination of symptoms, I’m sure that each person could make up their own list of annoying things. In fact, I bet the same could be done by every single person who has a chronic condition. Our lives are never just what the medics say, but tell them about them, and they nod knowingly, and that is almost as annoying.

 

Please read my blog from 2 years ago today – 08/01/2014 – Do you know, I think I do?

After more than a month of searching online and driving myself slowly mad, I have at last an e-cigarette set that actually works, it actually works a lot, lot better than the one I had before, even when it was……

 

Condition blinkers

I love it when you find something good, almost by accident. Lately, I have been having a lot of neck and shoulder pain, it doesn’t take a doctor to work out why, just as I’m sure you too know the culprit, my wheelchair. I have been doing all the standard things, massage, relaxation, warmth but nothing seemed to be making much of a difference. Just over a week ago, I went for my afternoon nap and settled into bed as I always do. Lie down, obviously, get comfortable, which for me, has to be on my back, but it still takes positioning. I know, surely flat on your back, is flat on your back, I used to think so too, but, it still takes the normal shuffling, for true comfort. Then the last two acts are probably different to anyone else. With my arms either side of me, I reach with my fingertips as though I am trying to reach the bottom of the bed. Doing so, means that I am forcing my shoulder down, so it’s impossible for them to tense, a simple, but effective trick. If you have never tried relaxation techniques, or thought them airy-fairy, or even tried and failed, I can honestly say that I’ve been through each of those steps, and eventually, I became a convert about 5 or 6 years ago. If you are a doubter, skip the next paragraph, unless you’re ready to open your mind just a little bit. The final thing I do is to run through my relaxation process, simple and effective to let me slip into sleep. On this particular day, sleep didn’t come, sometimes it doesn’t, so I lie there for an hour, just running around my body in my mind, relaxing each part over and over until the alarm sounds.

My neck had been really sore that day, so as I couldn’t sleep, I worked again and again on my neck, especially, at either end of it and right around it as well right up to my jaw. The best description I can think of is to say, that I was trying to relax it right down to cell level. Even though I was as sure as I could be, that there wasn’t any tension left, as I had long since passed that point where my neck felt as though it had vanished. I was lying there totally motionless, when I honestly felt something change in my neck, not so much a physical click, but more like a muscle I didn’t know was even there, suddenly let go, and it cascaded. I know better than anyone, that this next line sounds stupid, but it is exactly what happened. It felt as though, a hole had appeared exactly where the sudden change was. It slowly grew, spreading up to the base of my skull and down to the top of my spine. For the rest of the day, I neck didn’t hurt at all, but I was so intrigued, that I tried to repeat it again that night, but it just didn’t happen. Two days later, the pain was back and when I went for my nap, I decided not to let myself sleep. I repeated the whole thing and once again, eventually the same thing happened and the pain vanished for nearly the whole day. That time I wasn’t so lucky in the result, but I had come up with a plan. I have been working on my neck every afternoon and every night before I sleep. Not for the whole hour, as I now know where that “click” point is. I do have to be really relaxed to before I start on it, but as long as I am, I always feel a change. Since I started, I haven’t had any pain bad enough to complain about, and if I do feel anything, even when sitting here, I can improve it. I think what is happening is actually quite simple. I believe, that there is a nerve that is being caught by the tensed up muscle, not near the surface but deeper in my neck than my normal sleep relaxation process goes. With everything as relaxed as I can possibly make it, it is simply released and the pain is gone. Not rocket science, or anything to do with my PRMS or any other condition, other than normal everyday muscle tension, but it’s so worth doing. Hippy-dippy mumbo jumbo finished.

It is actually one of the easiest things to fall into without even meaning to, that everything that is happening in our bodies has something to do with a “condition”. Once you have a diagnosis, or especially, a collection of them, we are very inclined to sit here and try and make it fit, to something a doctor has told us we already have. I used to be so guilty of it, I simply couldn’t have an ache or pain, or something odd happens that wasn’t to do with either my PRMS or Fibro. I even found myself sitting scouring all the different sites, actually hoping that my “new” symptom, would be listed somewhere. It was almost as though someone had suddenly fitted me with a pair of blinkers that I just couldn’t see past. Stupidly, when I got over that phase, I went totally the other direction for even longer. I will actually take a little of the blame of myself, in both cases. For someone who is diagnosed today, there is a wealth of detailed information on almost everything other than the rarest of conditions. When I was diagnosed, nearly 15 years ago now, the internet was still very much a baby and doctors, well they didn’t like anyone putting anything online about health at all. Back them, even companies, like the Mayo Clinic, put up nothing about conditions. What was there, was sparse, mainly put up by people who not only had the condition but were amateur web designers as well. No, you couldn’t just set up a blog, or open a Facebook page, they didn’t exist. There were some fledgling site in the USA, but back then and even today to some extent, the information country by country changes. Having discovered that fact, well, the “new” symptom, might not be recognised here, but what about elsewhere? Eventually, I got fed-up with never finding what I wanted to and I stopped looking. Over the years of not looking, the information improved, suddenly things like nausea were a symptom of MS, according to medical sites in the USA, on some in the UK and definitely not in other places. Trust me, it gets confusing.

You would think that a condition is a condition, that the symptoms that make it up would be recognised and set in stone worldwide, but they’re not. From what I can make out, it doesn’t end at the web, it is just the same story with our doctors, they have just as many varied opinions. As patients, we don’t stand a chance of knowing if we are new ill, normal ill, or iller. If the so-called professionals can’t make up their minds, we are never going to stand a chance of assigning anything correctly. As a rule of thumb, I have come to the conclusion, that it is best to assume, it is something totally new, as I did with all the issues I had with my intestine. So OK, it did land up as I feared, being down to my PRMS, but if I hadn’t been sent to see the Gastrologist, I wouldn’t have eventually been given the right solution to managing it. I very much doubt if I had insisted in seeing my Neuro, that that would have been the outcome.

There is, of course, one other factor when it comes to knowing where our “new” symptom belongs and what is wrong with us, ourselves. I know I have done it once, but I can see that there is a potential for it to happen to all of us. Once your chronic illness is fed up of living alone, it invites its chums along for the ride, and we, eventually, stop caring. A new pain appears, you’re more tired, so what! It’s an easy one to fall into and totally understandable. Putting everything down to current conditions isn’t sensible. For me, it was a case that I was passing out or feeling as though I was about to. I put up with it for years, even after I managed to knock myself unconscious. Dizziness is clearly part of my PRMS, but this was slightly different, as I can feel the blood draining. If I lift my arms when I feel bad, I will pass out. In PRMS, you don’t pass out, just fall over due to lack of balance. I gained another condition they can do nothing about, Vasovagal. They can’t treat it, but there are drugs and situations I need to avoid. Life got easier with an answer. If I hadn’t seen the doctor, I might have been unconscious more often, but now I know. Years have passed and I could with easy now ignore symptoms, simply because it’s too much of a bother to do anything about it. I know, that that has to be avoided.

Our health issues don’t have a start date or an end date, we can get worse with the conditions we have, or possibly better. New ones can appear and often there is a simple answer, even if we think it’s an odd answer, it’s worth trying. It doesn’t matter if you can find it on the internet or not, if our doctor recognises it or not, if it’s there, there is probably an answer. We don’t need to be told, that cures are rarer than most people think, but we don’t have to suffer either. I was the biggest sceptic when it came to anything that didn’t look like a tablet, now I do relaxation daily and it helps me. If there is one thing that I know for sure, if we try to ignore it, it normally get’s worse. On which note, yes, I am talking to myself, I know that my hands are getting worse and I know that the day that I need to pick up the phone and ask for help is getting closer. Yes, I did try relaxation, it didn’t work, well it did when I wasn’t useing them, but the second I did, it was all undone. I know I have been putting it down to my HMS, but is it? They couldn’t do anything about it years ago, is the answer still the same? According to the web, yes, but who knows. Ultimately, no matter what, our health is in our hands and if I do nothing, nothing my hands won’t improve.

 

Please read my blog from 2 years ago today – 01/12/2013 – Accepting it’s happening

Nothing to do with my MS I know but I have a really sore shoulder and arm this morning, whatever happens to me it always seems to be my left side that it happens to. Injury or…..

A gap in the fog

It’s odd how you can feel so good and yet so bad at the same time. It’s been such a strange week, my brain has been the clearest it has been for a long while, but my body has been taking every opportunity to show me what life with chronic illness is really about. It’s perfectly normal for me to be wondering around totally uncertain of where I am going or exactly why, or just to be sat here staring at the screen with no idea of what I am supposed to be doing. Don’t get me wrong it hasn’t miraculously vanished, if only, it’s just the fog doesn’t seem quite so thick. I have no explanation as to why my mind is that tiny bit sharper, it’s, really an odd feeling especially as I haven’t felt it for a long time, but I feel it. The rest of me, well it all feels as though the improvement in my mind has been paid for by a down step in the rest of me.

Every day in the past week I have been fighting with a body that just doesn’t want to behave. My legs have been a constant problem, letting me down over and over again. I have to date been good at covering any issues, but Adam has twice spotted that I was unable to move simply because one or both of my legs weren’t able to take a step in safety. Once again the worst point is when I first stand up. I may have made it from sitting to standing, but there is either no way of taking a step or I get a spasm in my lower back that shocks me into inactivity. It is as though I am frozen to the spot and I have to hold onto something as the pain has a habit of shooting right through me. It honestly isn’t possible to move at all, I have tried in the past and the result is either no strength in my legs, meaning that I am either in danger of or do actually fall, or I cause the pain to get worse. Neither are exactly my first choice. I can’t even sit down again, all I can do is stand there and wait for it to pass, as it always does. At times, standing up has even triggered a similar effect in my arms, which is really not helpful as I honestly need them to steady myself. That usually only happens when I have been sitting on the settee, hunched forward to make it easier to breath.

This whole week has been one without strength. I have lost count how many times I have been defeated by a ring pull, or even more pathetic been unable to remove the paper seal over the top of the milk bottle. The most stupid things have become a battle zone. Add in my normal poor dexterity and at times I have just wanted to give up. My left arm has been weaker than my right for a long time, but both are of little real use at all just now. A small package arrived for me the other day, it arrived in one of those white padded envelopes which have a red stripe to pull to open it. After four disastrous attempts, I had to take the scissors to it, it took me several more attempts with them, simply because I didn’t have the strength to even use them. Once through the envelope, I was almost at screaming point to find the enclosed item, inside a thick sealed plastic bag. On the scale of pathetic, I felt as though I had fallen off the end. Even on those things that don’t take strength at all, I have struggled badly at times. You don’t think about strength and things like feeding yourself or typing, but when your muscles fail, it affects everything.

The one thing that no one but me could ever notice is my eyesight. Having said that, I think Adam did spot it the other day. I was simply trying to read something of the TV, sky has this horrid habit of backing everything in blue then putting small yellow or white print over it and even with my glasses, I now struggle big time. Experience has told me that the option can’t really help anymore than they already have. I can’t use my glasses here at my PC as if I do, they turn the screen into a worse fuzz than it normally is. I do have glasses to use when sat here, but they mean I can’t see the TV at all. I haven’t been able to make out faces on the TV that well from sitting here for ages, recently they have vanished even more. Now if two people have similar hair, I have no idea which is which any longer. Bifocals just don’t work for me so I am left living in a fuzzy existence whatever I do.

Everything just seems to have taken a step-down and has managed to make itself known. It’s not like I have suddenly developed something major or new, just everything is that bit worse. My chest is tighter, my breathing more difficult, my stomach is once again causing pain that stops me dead and just because it can, it takes my breath away. The Psyllium may be letting the contents of my intestine move forward and eventually out of me without effort, but it hasn’t dealt with much of the pain. It doesn’t matter which part of my body that you might choose, all the pain levels are just that little higher than it has been for a while. It’s not like I want to dive into my Morphine for a booster, it’s more like my slow acting Morphine isn’t quite holding it at bay. Every sensation that can be felt has triggered at will. Pain, burning, pins and needles, numbness and anything else you can name has appeared in the past week. All of this together has been the reason behind the searching I have been doing over the past few weeks into what it is that drives me and how I feel about it. It has had a really positive effect, one that both Adam and Jake have noticed and found it so marked that they had to mention the fact that I am bright and chirpy respectively. It doesn’t take a genius to work out where that has come from. My mind is once again at rest about where I am and what is happening to me. As I said, “It’s odd how you can feel so good and yet so bad at the same time”. It is odd, but when your mind and your body are in such totally different places, understanding it isn’t that hard.

I really did need to recenter myself if you like. It’s too easy to just forge forwards, to not questioning what is happening or checking how we feel about it. I hadn’t stopped for a while now and just asked the simplest question of all “Am I happy?”. I wasn’t, I was letting myself disappear under the pain and trials of my life and I wasn’t listening to me. Not my body, I listen to it all the time, but I wasn’t listening to me and I was vanishing under it all. Yes, I am brighter, I am more chirpy because I am here again and in control again. I know where I am going and what is happening, I can’t control that, but I can control my happiness. There are so many elements required to be happy, being in control, having plans, setting goals and having achievements and not one of them is affected by our physical pain, weakness or strength. All of them come from our mental well-being, something that is easy to ignore, especially when you live within a fog.

Please read my blog from 2 years ago – 01/08/2013 – Just not getting thereĀ 

6am, I was awake, I am never awake that early but a pain in my left heel was screaming at me and 2 and a half hours later, well it calmed down but it is still there. I am making a huge guess here, but I think it is pressure point pain. I have had spells of it before but never in such

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…..

I’ve had enough

Recently it has felt as though l can’t live my life without drama and yesterday evening was no different. I had once again made it to 10 days without going to the loo, so as I have done for years I took my laxatives, I think this is the third of fourth time that the result has been increased and intense pain, by 3 pm I the pain was so bad that I knew without a doubt that I wouldn’t sleep, but at least I could rest so I lay down. I don’t think I had been there for even one second without the pain taking over my entire self, once again it had got to the point where I was totally unable to even put my hand anywhere near my stomach and I was having to breath my way through each pain as it arrived. All of which triggered more pain in my diaphragm and intercostal muscles, there is some connection there that I can’t quite work out, other than the fact the only way I have learned to deal with the stomach pain by using the same breathing methods usually used in labour. The energy used up in this palaver is ridiculous, going to the loo is supposed to be one of those simple things that our body does, without us being that bothered by it, yet I am always bothered by it as there isn’t a day without pain in my guts as they pack themselves and shift large lumps around me. I hadn’t been lying down for long when despite my earplugs, I heard something happening in the hallway, the shopping which wasn’t supposed to be here until 5pm had arrived early, so up I got to sort it all out with Adam. The pain kept stopping me in my tracks and I simply couldn’t do anything other than lean on the counter and wait for it to pass, but there was no sign of anything being anywhere close to leaving me. It was a complete hour more when I decided that I had to try as the pain was more than I could stand, so I went to the loo and strained until at last I felt as thought there was something in range. I managed to pass a tiny piece and several minutes later after I had used a mini enema, I passed another but it was then that I noticed that the entire water in the toilet was red and what I had passed was covered with mucus and fresh blood.

I decided that as Adam was at home and with all the emotional upheaval of the last few weeks, that I had to be totally calm and just go and check online. At that second the only thing I could think of was that I might have ripped myself badly inside with all the straining and mad contractions that had been going on most of the day, for all I knew there could be internal bleeding or something worse. I found two sites that were totally useless as they just wanted to reassure people that they didn’t have cancer, I knew that already, the blood would have been dark, not fresh, all I wanted was to know if I was in danger of any sort and I found nothing. I picked up the phone as I was my only option and phoned the doctors, to my dismay it was closed and the person who answered the phone was part of the out of hours service. I had no choice but to tell them what had happened and as the words mucus and blood came out of my mouth, I broke down into tears, the calm approach failed totally. He was really nice and said he would get a doctor to call me, which he did within five minutes, five minutes that found both Adam and I in tears, Adam because he had decided that I had cancer and I was dieing, just the thought pattern I wanted to avoid.

The doctor put my mind at rest by telling me it was probably just a hemorrhoid that ripped, something I honestly didn’t think I had as I have had them years ago during my first pregnancy and I still remember how painful it was sitting, something I don’t have a problem with it at all, but I trust him. He is going to send a prescription for something to help heal it and some suppositories, which with the problems I have, I honestly don’t know how they are going to help. I did try to explain to him but well it was his afternoon off and he said that he would phone me tomorrow, as in today. The one good thing that he said was that the issue really is that my bowels are no longer working properly due to the lack of nerve signals, exactly what I told him three years ago, but I had to go through all the hospital tests, test that showed up nothing and I was then left from then to now struggling with it all by myself. Suppositories only work if the content of the bowel is within range, half my problem is that it never gets in range without the laxatives and he doesn’t want me taking them, I guess I will have to explain it to him all over again and let him know also that I haven’t passed even wind in the last 3 months other than when I have taken them.

It took both Adam and I a little time to settle back into a normal day, he had managed to wind himself into a state believing that I was now going to die even sooner, myself just because I was annoyed at how badly I had failed in covering it all up and keeping it to myself while I found out what was really happening. Once more we found ourselves sitting talking, holding onto each other and crying, this time thought it was over nothing. I was up three times last night, each visit to the loo resulted in just another couple of tiny pieces leaving me, just as happened again this morning and all of it without blood, but nowhere near clearing what is still hiding inside. There has to be an answer to this, something that they can give me other than liquids that I quite simply can’t drink, especially as lack of fiber isn’t part of the problem as my diet has to be more than 90% fibre already, plus I drink more than 2 liters of fluid daily already. It isn’t only I can’t stand the taste of the drinks, but I was told I would have to drink at least 4+ of them daily forever, which is a total of one liter of liquid that bloats me and makes me feel sick. The last time I tried it, well the results weren’t good, I only have 11 hours in my day and it took all of them just to drink the 4 and they stopped me from both wanting to eat or drink anything else.

The one good thing that has come out of this is firstly the doctors confirmation that I am right about why I have this problem, plus it has also made me determined that I am not going to go through this ever couple of weeks any longer, there has to be an answer and I am going to push and push until it is found and everything is working in an acceptable way.

 

Pleases read my blog from 2 years ago today – 04/02/13 – Sluggish and a little lost

I am really tired today, not that that in itself is odd but it’s a more a sedentary effect sort of calming and peaceful, not the best when you have post to do and a list of small things that has hardly been started. I just seem content to sit here picking my way……..