Hospital again and agian and…

I am so far behind my normal scheduled today that I have given up any hope of catching up. I had my appointment at the hospital this morning to find out what happens now with the problems I am having with my guts, this time I had to wait but not too long and it what a different doctor that I saw this time. We discussed the gallstones and at the minute it looks as though nothing is going to be done about them at the minute. The doctor like me isn’t convinced they are the root of the problem, more something found by chance. She like me thinks it is more a gut problem than a problem with my gallbladder, yes I get pressure and discomfort in that area but I get discomfort right across the front. The other tests that they ran show there are some raised levels of enzymes that could be because there is some type of inflammation of the gut so I am going to have to have an endoscopy. I have had one before about 8 or 9 yrs ago, so I know what it is like and what I will need to do before it, but this time I won’t be sitting around worrying what is going to happen as I know. I very much get the feeling though that she too thinks that at the heart of my problems is simply my MS, the endoscopy is really to ensure there is nothing else going on. I did mention the connection to the vagal nerve and she confirmed that it was a possibility but one we would look at after the other tests.

So I now wait for a letter and the good news that I once again have to go up and down our stairs in that horrid stair climber, even now having done it 5 times, as the first trip out they carried my down and used the climber to bring me back up again, I would still not recommend it to anyone. This was my third trip out in just a couple of months and to be honest knowing I am going to have to be doing it all over again in the not to distant future, isn’t filling me with glee. To anyone that is reading this who lives on anything other than the ground floor and has just found out they are ill, move house now!

Adam managed to once again come with me to the hospital so although I was as normal falling over my words and forgetting what I have to say, I at least knew he was there to rescue me if I blanked which of course I did, but for once covered it with humor rather than getting upset by it. Both of us left there with more confidence in the doctor we saw this time, it is amazing how much the way the doctor reacts to questions and gives enough of the human balanced with medic can make. We did talk a little further as to what if the endoscopy showed nothing and it would come down yet again to trying to manage the situation through medicines, I have a feeling that will be where it ends, as I said months ago I am sure this is still my MS but at least for once they have looked past it just in case.

There is a lot of work ahead of us to get life balanced again and to deal with the mess I call a brain, I know and so does Adam I think, that this is the start of the bad slope, the one that is dividing me away from the normal world. I have come to terms in the past few days that I am past the stage of my working with list and memory prompts, I now need that second brain to double check everything and aid me to manage a little longer with out outside intervention. That day will come but I want and need to push on as a person for as long as the ‘mess’ will let me. It has taken a full week but today I at last feel like a person again rather than a someone who could do nothing but cry.

Dip

I crashed again last night. That about says how I feel this morning, short and to the point. I felt it closing in as the evening went on and by 10 o’clock I was almost crawling to my bed. Sunday night TV is to me at it’s best at this time of year, I can more than happily watch the BBC from the evening news right on, which is exactly what I did. I had felt as the day went on that I was chasing my own tail, frequently that is a sign of things slipping. Everything went well until around 1pm and then slowly I lost it, I was behind by the time I went to bed for my nap and I woke up feeling tireder then I was when I went there, always a bad sign. No matter how fast I tried to move answering and sorting out the tweets I received I just seemed to have more and more of them piling in behind them, my system was falling to bits. I pushed myself as I wanted to shut my PC down before Strictly started, I was about 5 minutes out but I really had had to push hard and that removed the final energy I had.

Although I was really enjoying the TV I just couldn’t get comfortable on the Settee, I kept changing the cushions around and my position on them but all I felt was pain in my legs. By sitting hunched over my knees and leaning hard down I could release the pain in my legs but the problem then was the pressure sensation to crosses over my upper abdomen from my gallbladder on the right straight over to my left side. One of life’s no win situations. As always I was tiring myself out more and more just trying to stay in a constant, by the end of Andrew Marr I was wiped out and bed was my only thought, my slow progress getting there was the final clue.

Waking this morning the pain in my legs had calmed until I stood up and the shock waves ran from my feet right through me, just getting to the living room to boot up my PC while I fetched my coffee wasn’t much faster than I had been at bed time, I could see clearly what my day ahead would hold. It is now 4 hours since I got up and well I was right, pain levels are high again, after yesterday morning I was so hopeful that things were on an up, now I am not so sure, having said that my mood is still quite good considering everything else, so it is not all bad. I think having a couple of lighter days has made a difference and I am still very much on the up side, just a little disappointed with my legs. MS is nuts that way, you push yourself to do something like some typing and you pay with sore legs, why?

I am finding the pressure in my abdomen is really getting uncomfortable now, it was the case that I used to have discomfort in short spells and I could release it at times by changing my posture. Yesterday something new added itself in, I was also getting pressure in an area of about 6 inches below my gallbladder as well. I am calling it a pressure as I am not too sure what else to call, to myself it feels like the area is dead, as though it is slightly wooden or numb. There isn’t a feeling of pain most of the time, just occasionally, if there is going to be any pain it is usually in my left side, and there is nothing to feel at all when I press anywhere in my abdomen. Some area are painful when pressed but not to any great extent. The sensation is extremely annoying and uncomfortable but I can say no more about it than that. I may not seem of any importance at all but try living with it day after day after day and the spreading of it is making me worry a little more about the reasons. I have just two and half weeks to my next appointment not too long to wait but it is dragging now.

Reading all that back it all sounds rather down but I am honestly not, the lift in my mood that appeared yesterday is still there, it is just that my body is putting up a challenge, after all it lost yesterday in the daily battle, at the minute I think it will lose again today.

Letter of errors

You know those times when everything seems to be just ticking over and nothing is really happening and then without reason something appears to destroy that feeling of equilibrium. Well yesterday it happened again. Adam brought the main in when he arrived home from work and I had received a letter from the hospital confirming that I have gallstones, which I already knew from when the scan was done, but there is one line in my letter that is bugging me. For some reason that I can’t think of, or where it came from, and neither can Adam as he was there with me when I saw the specialist, that says that the pain appeared to be more on the left side rather than on the right where my gallbladder is. I remember being asked if there was pain on my left side but both of us remember that I did say yes but I also added that I thought it was being caused by the pressure sensation on my right. I know it sounds like a small thing, but this actually goes well with what I was talking about yesterday morning. Yet again this is the type of thing I have continually come across, somehow the doctor I saw had taken one line and turned it into something that it wasn’t. I know this is something that we can put right when I see her next month but if she hadn’t put it in writing this would remain on my file and I would have no idea why nothing was being done about the source.

It takes such tiny mistakes to land up with everything going in the wrong directions, I had in the past thought it would be a good idea to take a Dictaphone in to any meeting with a doctor, at least this time I had Adam. I used to always go to see a doctor by myself as I prized my independence, but in someways I am glad that Adam has to come with me, I now have a second voice and set of ears. I have never done it but I have often thought about asking to read my hospital notes as I suspect there are loads of examples of this sort of thing. I used to often think about asking to see them as I know that I have the right to but well I have lost the interest in fighting with the NHS if I had been going to do so I should have done it years ago when I had the reasons to, when they wouldn’t listen to what I said. What is in the letter is something I will be able to correct soon enough.

I suppose it is a fact that when ever there is anything wrong with you suddenly you have no power over anything that is said, thought or done to you. Doctors take over and we let them, which I don’t quite understand when I really think about it. Why do we let them? I know we have to trust them as they know about medical issues, but when they jump to a conclusion about us there is nothing that we can do to correct it, mainly as we don’t normally even know they have done it. We for some reason think that a Dr can tell everything about us in just a 15 minute consultation and we are then surprised when they get it wrong. May be we shouldn’t be. I know if I sat and someone talked to me for 15 minutes about something I wouldn’t be able to really draw any conclusions about anything major. It might well explain why so many of us don’t get the right diagnosis as I said yesterday the doctor draws a conclusion that is wrong, and the real condition is totally missed.

I have the feeling that when I go back in November we will have to start all over again as no tests or explanation has happened that explain the really bad pain labour like pains, or the incontinence or the malabsorption of my medication. I really think we are back to the start with a little knowledge as we now know what is causing the problems at the top of my stomach, but what is causing the rest?

Reflexology

The therapist has been and gone, she is a really lovely lady and was here for 2 hours. We started with talking and I gave her a list of my illnesses and the problems that I am really looking for the most help with. She then set up her massage table and mixed an oil with had a mild smell of herbs to it, before starting on my feet where to be honest she concentrated on. Basically she was working on the lines of reflexology, I don’t know about it in great detail but my personal knowledge of it is that it works on the principal that different areas of the body control the health of internal organs, muscles and bones, the largest amount of time was spent preforming a small circular motion on the arch of my left foot to begin with, as she said these where the areas associated with my Gallbladder, spleen and digestive track. I found this on line after she left and it shows exactly the areas she was targeting to try and relieve some of the problems I have at the moment.

foot-reflexology-chart1

She said that it was normal to find a crystal type substance that disperses with massage, I to be different didn’t have any crystal she said they felt more like bubbles, but they did slowly move and disperse. She talked to me all the time and mentioned that there was a problem area also in my liver, spleen and pancreas, if so they are yet to be discovered by the Doctors. It is hard to know if this has made any difference to those area’s, all I can say is at the minute sitting still here at my computer, is that I can still clearly feel those points where she was massaging them. It wasn’t particularity painful but where she found the bubbles, exactly were I actually pain frequently, I did feel some pain but nothing unbearable, we did discuss then the masking of pain due to my meds and she said it was a problem a lot of her client talk about, and yes it was impossible to know if I wasn’t on my meds how much pain was really there. Strangely I hadn’t though a great deal about it in the past but I do know that when I feel really bad or just really tired, I also get a lot of pain in my feet making it even harder to walk, and they burn when I am sitting still. I had put all that down to my nerves but there reflex pint could be telling me a different story, something to think about.

She then massaged the backs of both my legs and then on to my lower back. Again she said there were bubbles in my back and the only tight area that I have was up at the top of my spine near my neck. She then also tried some reiki on my lower back, she said that I should feel a warmth on my skin as she just stood there with her hand not quite touching me, I have to say I felt nothing at all. All of this took 2 hours and my conclusion is that it is a very pleasurable to have you feet massaged over a slow long period of time, has it helped to relieve the pain, well not that I am noticing, but I suppose that it may take a few hours or a day or so, I don’t know what to expect, all I have to do is keep my fluids up over the rest of the day and wait. I have the worst pain and immobility problems at the end of the day and I suppose that tonight will tell me more than I can say right now. I have her phone number and I will keep it here as I am still open minded and unsure, only time will tell.

Another condition to add to the list

Sorry for there being no post yesterday but I was rather tired all day and spent the morning trying to get ready to go out for my hospital appointment and setting all the other things I do in a day done. I had been told that the ambulance would arrive between 12 and 12:30 so I have to be ready, it takes such a long time to just put on some clothes sort my hair and add a touch of make up, something that I used to be able to do very quickly well at least quicker than Adam ever has done. Now well lets just say that it has to be done in stages with rests in between each burst of activity. Adam came home early for his lunch break as although he couldn’t come with me to the Southern General, he wanted to see me out of the house so it would reduce the things I had to do, even if that was only shut the house down and lock the doors. He had to leave at 12:40 to get back to work and of course there was no sign of the Ambulance.

I didn’t want to start doing anything else on the PC as I was sure that they would arrive in the middle of something that I wouldn’t want to leave half down, so I answered a few emails and pottered around on Twitter. At 1:15 I was getting a little wound-up so I phoned to see what was going on and I was told that the person who had given my that time slot shouldn’t have said that, what I should have been told was to be ready 2hrs prior to my appointment and an ambulance would be there in time to get me to my appointment. I wish that had been what I was told as due to the damage to my brain I don’t deal well when I have been told something exact like that and then it doesn’t happen, silly yes but I can’t do anything about it. Add that to the already established fatigue of getting ready to go, I was really tiered and I hadn’t been anywhere yet. I have found things like this stressful for along time and it was one of the things that I noticed very soon after becoming housebound as all that stress had vanished, but all I could do yesterday was wait and try to stay both calm and awake.

Eventually at 1:40 they did arrive and all that hassle of getting out of here and down the stairs woke me up enough to talk a little with the guys who were getting me down the stairs in the horrid walker thing, no it wasn’t any better than the time before. Hassle free to them I was in the Ambulance, strapped to a seat and off, feeling increasingly sick. I had left the house this time with my glasses on as I noticed last time that the blurred movement through the window as we traveled was making me motion sick, they did help but what helped more was that I feel asleep waking just as we arrived at the hospital gates. Too my surprise for a second time I didn’t have to wait, I was straight in to see the Doctor as there was no queue.

The scan was quite straight forward but I was a little surprised to find that it was just a scan on the upper part of my abdomen only, I thought it was to be a more all over scan. I simply had to lie on each side and then my back as they ran the cold lubricant and the scanner head over me it took less than 5 mins and I was sitting up sorting out my clothing. The Doctor said at first that he would send the result to the Doctor at the Victoria but I thought I would ask if they had found anything. They had I have Gallstones, my response I think surprised the Doctor a little as I laughed and announced “Thank god for that something that for a change can be fixed, I am kind of fed-up being told there is nothing they can do” He also laughed and we then had a short chat about my MS which he said he had guessed just after I was wheeled into the room. He didn’t have my notes as it was just a scan and I have to return to the Vitoria for the official results. The nurse helped me return my clothes to the right position and we moved from the room quickly as the ambulance that had brought me there was waiting for me to take me home. So from start to finish it I was out of the house for an hour. Although it looked at one point as though it would be longer as we couldn’t get into that house, partly my fault as I couldn’t remember what keys did what and partly their fault as they had turned the lock on the inner door the wrong way and it was spinning rather than opening, rather odd but we got in in the end. I went straight to bed.

After a much needed sleep, I came through here and did a little searching on Gallstones and I was surprised to find that they are probably the cause of a lot of symptoms that I have been having for years including a lot of the ones I have written about in here over the months. Some of the things they can cause are the indigestion type feeling I get and the pain that I felt was similar to a heart attack but knew it wasn’t that. They also cause the nausea and vomiting, the chills and sweats, the ill sensation that eating causes me and often leads me to going to bed after eating. The bloated feeling and appearance there is to my stomach, the feeling that I described once as a babies bottom pushing out under my ribcage as that is the only thing that I can compare it to, the discomfort and pain in sitting unless properly upright, both under my ribs front and back.

At the minute I have no idea what they will do about it as that is up to the Doctor at the Victoria who I have an appointment with on the 9th November, a couple of weeks to wait but I do know that there is an end in sight I hope. Adam says I should push them into removing them surgically but it isn’t as simple as that. I know already there is a good chance they won’t do that because of my overall health, it is possible that surgery may be too high a risk but we will see. I’m still on a bit of a high though as there is a possibility that they will be able to do something and that I can get rid of at least some of the pain and discomfort in my life.