Pain in the side then a sudden explosion……

After being given drinks by the doctor to clear out my bowls as nothing else seemed to be working and taking them for a couple of days with nothing happening i was starting to wonder if i was ever going to be able to remove what may be blocking me causing my bowls to play up so badly as they have tested for every thing else. Yesterday, after drinking my second drink of the day as the dose is maximum of two a day, i suddenly had a sharp pain in me left side and i ran to the toilet and exploded. I then continued to exploded a few time in a row until what was inside was now out. I won’t go into details but the smell was horrific.

I continued to have terrible wind for the rest of the evening and small aches and pains in the sides. I then woke again this morning only to find i was building wind again and was slightly constipated again. I then decided i would drop my dosage and instead of two measures i would only have one. It took about 20 minuets before another pain in the side and a run to the toilet resulting in another large explosion with a couple of after shocks. I don;t know what is going on but i am just glad to be getting it out of me as it causes constant pain and agony all the time. I have now got horrible wind again and will probably have it for the rest of the day but at least the blockage, if there is one, will be removed over the next few days and maybe my bowls will then settle and i will get some rest from all this messing about.

My head is being good despite threatening to start a couple of times yesterday and once again this morning. I have plenty of injections now the chemist is doing my orders on a weekly basis and now keeps a weeks spare in stock so i should never have to run out again. My oxygen tank is starting to reach the empty mark so i will have to order another one soon. i have to say i am glad i use it as at times i am sure it has saved me whilst having major panic attacks. The main use is to reduce the amount of pain i get with the attacks and also reduce the length of time the attack lasts. Some times if you catch the attack early enough you can stop it from developing by using oxygen therapy. I will definitely have to re-order my tank so i don’t run out especially over the Christmas period.

Well i am starting to feel a bit better now what ever is causing this IBS to play up is coming out of my system so i will have to try and get in a couple of fishing trips before the weather starts to get to cold for me and my head starts for yet another winters period of pain. That's the only thing that has been stopping me from doing any over night fishing as i don’t want to have a big attack and something happen whilst no one is around to help, even though you prefer to be left alone whilst having the attack. I will have to try at least to get one over night fishing trip in before the cold snap so i got about a month i recon before it will drop suddenly and the winter will really begin.

Knock Knock from the Beast, Now waiting for answers…

Another wake up call from the beast this morning which was very surprising as yesterday was the first day in a while that i actually felt a bit better and my stomach wasn’t playing up. Today i have woken not only to a massive attack but also i am bloated and have terrible wind that is trapping all over the place. I think its trying to catch up for yesterdays break.

My neck feels extremely sore again after the attack and feels like something it stuck in between the joints on the bones. I am starting to wonder if that feeling is actually the nerve that is trapped that is causing me so many problems. To me it feels like a large ball of grit that grinds away when ever  i move my arm or shoulder joint. I can feel something stretched from the base of my skull down the neck and into the shoulder. It’s a strange feeling like something elasticated is joining the two together.

My back feels like i have laid on a bed made of rocks. It is so sore. I am getting sharp but not constant pain in the centre of the back right at the bottom of the spine and then i have a constant ache on either side that i believe is the muscles. As the wind gets bad i then start to get pain up the top of the back in between the shoulder blades making it more uncomfortable and annoying rather than painful. If i begin to walk anywhere all these pains begin moving up and down the spine making it very painful with each step i take. Not to mention the feeling of having lead shoes on.

This only ever used to happen once every couple of months and i have always put it down to the after effects of having an attack. It wasn’t until i started to get them with out having attacks i realised it was another problem that had to be diagnosed and sorted. Then as it became on a daily basis and now i can honestly say i get it at least 3 times a week. It is the most horrible of all feelings as your bum goes dead and your legs start to go to sleep and you begin to worry as you just can’t get around or move about anywhere with out serious pain and problems. I just wish we could find out exactly what is causing it and now i have to wait for yet another MRI scan before we will know anything. Some times i get so frustrated waiting around for appointments but there is nothing we can do except wait.

The Beast came out to play…..

Again the Beast decided to come out to play at 4 am this morning and wake me up with a massive attack that thankfully was aborted by my injection. I did try and get back to sleep but i had no chance. All i could do was toss and turn as the shadow or pressure feeling was just too strong and kept on irritating me. About 6 am i just gave up trying to sleep and decided to get up and start the day. I was greeted by yet more pain in the back and sides and my stomach felt like it had been put through a grinder. The wind is still developing even though i haven’t eaten or even drunk anything yet. I did take my tablets and medication and then decided to risk having a coffee to see if it would make my stomach worst. It hasn’t as yet made it any worst but i am surely not feeling any better.

The wind is still building and every now and again my temperature rises through the roof and sweat starts to poor off me. I am wondering whether i have a cold on top of every thing else that is going on at the moment. I really hope that isn’t the case but my nose don’t stop running and keeps getting sore and hard to clean it as the mucus turns hard and sharp and rips the inside of the nose. Ever since i took the verapamil and had an allergic reaction to the medication i have been going through hell with my stomach and the IBS that i have suddenly developed. I don’t understand why it has happened and why it didn’t stop when i stopped taking the medication that caused the problem. The doctor has tried all sorts of different medications to try and settle the bowls and stop all the wind building but nothing seems to work. Don;t get me wrong some of the medication does help as i would be a lot worst with out it but it doesn’t stop it completely.

The weather is about to turn nasty after the next month so i am preparing for a very rough time with my head and the beast. I am hoping it wont come to that and that the specialist will be in touch and i will be able to try another medication in order to try and get the attacks to stop all together. The ide is to put them to sleep so they don;t start in the first place rather than just try and treat the pain as there is no medication in the world that will deal with the pain i have tried them all. I have tried some of the strongest drugs known to man and some are highly addictive and may have caused me problems with my heart to appear earlier in my life rather than later. I am hoping this isn’t the case and my heart will be fine but you never know until its too late.

Feeling really unwell and unable to cope….

I have not been well at all for the last few days and now feel so weak its even hard to sit at the computer and type. My bowls have decided to play up something rotten and my stool has changed colour to a clay grey like tooth paste making it very difficult to push out. Any one with a dodgy stomach should stop reading now.

I have been constipated for well over a month and been really bad for the last 2 weeks. It wasn’t until Friday it all turned into a serious problem as i tried to go to the toilet on Friday evening but was finding it hard to push it out. I gritted my teeth and pushed as hard as i possibly could and suddenly exploded with a big ball and then a whoosh of water like having diarrhoea. It was every where in the toilet up the sides of the pan and all over my backside and legs. As i cleaned myself of and looked at the mess i noticed that my stool had turned a clay grey almost black with a oil slick like substance on the top of the water. Also i have been getting a constant wind build up and trapped wind travelling around the internal organs yet again causing me a lot of pain.

As to why this is happening to me we don;t know and the doctor is lost for words but is trying to get to the bottom of things. After having my bloods done she found out that my cholesterol levels are very high in a dangerous level so she has placed me on some tablets to get the cholesterol levels down as fast as we can. She was very concerned about heart problems within the family history and also the chest pains that i am getting. I have now been referred to the nurse for a chat about my diet and plans to get me eating a lot more healthily.

With regards to my bum going numb all the time and the problems i have walking and my legs going to sleep every now and again i have been referred for an MRI scan to find out what on earth is going on. She believes its down to arthritis or a problem with the nerve and spine.I personally think its got something to do with the nerve that is damaged in my head or trapped in the neck. My shoulder is still getting problems and my left arm is still getting pins and needles every now and again. I just wish that this would all stop and i start to feel well soon as i don;t know how much more of this i can take. all i want is to know what is causing it and be able to manage it so i have some sort of quality of life because at the moment i don;t have anything and all i am doing is living from day to day dealing with the pain and the problems wondering if something bad is going to happen to me and it becomes my last day.

A Break from the Beast but not the Bowls…..

The last few days have been a bit of a nightmare as i am having major problems with my bowls and excess wind. It’s bad enough having to suffer with attacks from the beast each morning but to wake up and then be in agony within a couple of minuets of opening your eyes all because your stomach is bloated and you can seem to get rid of the wind or stop it from developing. I have tried everything you can imagine and there isn’t a medication or tablet that you can take that will help get rid of it. I have use “Liver Salts” in order to break down the wind and try and settle my stomach but it only gives relief for a short period of time and the wind and pain just returns.

This has been going on a for a few days and due to me being constipated all the time it is a worrying situation to be in. On Friday my stomach was really bad and no matter what i tried i just couldn’t seem to get rid of the wind and no matter how many times i tried to go to the toilet and pass the wind it was just not having it. Then suddenly on Friday evening i had a strange feeling in my bowls the same feeling you get when you have the runs so i dashed to the toilet and tried to go. After about 5 minuets of pushing as hard as i could, but nothing seemed to be coming out, i suddenly exploded. The relief was amazing and it poured out of me. When i looked to check what had happened and the mess i had left behind after exploding so badly my stool had turned to a blackish grey colour and there was like a grey oil slick on the top of the water, not to mention the smell was like nothing i have ever experienced before.

It was as if there was a blockage and what came out had been in there for a very long time. I felt great after the clear out but unfortunately the very next day i was back to the same old routine of being constipated again and excess wind building up inside me and unable to pass it or get it out. The trouble with the wind is that it doesn’t stay in my bowls and ends up travelling around the inside of my body making it very painful and uncomfortable. I have tried everything but nothing seems to help so i no longer know what i can do to relieve the situation and make myself feel better again.

I have been trying to ring the doctors and make an appointment for the last half hour but the telephone is constantly engaged. this is normal for the doctors as they are always so busy. It is murder trying to get an appointment to see my actual doctor as she is pre booked weeks in advance and they will only allow priority appointments to see her so small things like problems with your bowls will be given to the locum doctor to deal with instead. I wouldn’t mind so much if i could actually get the appointment in the first place. Sometimes i just want to SCREAM!!!

Woken by the Beast and depression kicks in….

Its no surprise that the beast has called yet again in the early hours and that the attack was again a strong one that lasted some time before the injection was able to abort it. It has left me with a very sore neck and back this morning and also a feeling of pressure on the left side of the head known as the shadow. This “shadow” as they call it is one of the warning signs that i am going to have some very nasty and strong attacks later in the day and i normally get it when the weather is really cold. This is the first sure sign that winter is fast approaching and its time for me to start preparing myself for what lies ahead.

I have bought myself a nice thermal woollen hat that not only covers my head but also my ears and the back of my neck. It was actually one they use for Carp fishing during the winter and is designed to keep the coldest of days out so i am hoping this will be perfect for what i want it for. As long as i can keep the coldest of temperatures from effecting my neck and head i should be able to get through this winter with out too much hassle but something tells me i am in for a rough ride this year. I noticed a new pain last night, a really sharp stabbing pain right in the middle of my spine at the base of my back and is a constant one. I have looked to see if there is any insect bite or sign of a scar where i could have injured it but nothing is showing not even redness to the skin but the pain is definitely there. As to what is causing it i don’t know and only hope its something silly as its a bit worrying as it has been there for 2 days in total and no reason for it.

At first i thought it was just normal pains and aches like i usually get in my back but for some reason this pain stands out from the others. Again today i have a very sore back and any movement is met with sharp pain and agony and i am dreading walking to the shops or the chemist later this morning as it is really going to make it hurt. I don’t know how much more i can take of this and why the doctors haven’t found out what is causing it. I understand i suffer from a rare and un-curable condition but that’s no reason just to leave me rot away not knowing what is going on. With the winter approaching fast and the cold weather about to set in i have to find out what is going on as quickly as i can as it won’t be long before it all becomes too unbearable and i won’t be able to move at all. I am so hoping it doesn’t get that bad.

My mood i all over the place today as one minuet i am laughing at my predicament and the next i have tears in my eyes. The more i think about what is happening the more i become depressed and upset. If i could only get the back pain under control maybe it would seem so bad all the time. I know i have to put up with the head attacks and the strong shadows until they find the right medication in order to put the beast asleep, that i understand and can accept. The problem with the back i just don’t need at the moment as all the other problems are bad enough. Oh how i wish i was younger again, when i didn’t have a trouble in the world and was fit enough to play proper sports or go on vigorous outdoor activities with out a care in the world. As for now? all i can do i wait for the inevitable and pray it isn’t too painful to cope with. 

Waiting for results and appointments is driving me insane!

Again the Beast snuck up on me at 3 am this morning. It’s getting to be very annoying being woken up at 3 o’clock in the early hours and not being able to get back to sleep. Why can’t it be at 7 am instead at least i would never need am alarm clock to get up early. Yet again it was another strong attack that has left me nursing my head and neck and again i have bad pains in the back and up and down the spine. Well at least it’s only until next week i have to wait to get my blood test results and hopefully find some answers as to what is going on with my and why i am having so many problems.

I am again going to try and chase up the neurologist today and try and find out why they keep cancelling my appointments and when is the soonest i can see the specialist. I will explain all the troubles i am having and what is going on and just maybe they will be able to pull their fingers out and give me a confirmed date to see Dr. Pickersgill, the specialist who knows all about CH and how to treat it. The last time i spoke with him i was amazed at his knowledge about the condition especially as it is such a rare illness and they have no cure for it as of yet. He seemed to know everything there is to know about it and how to treat it with all the different medications. It has taken me years of reading and research to find out just 1% of what the doctor knows. That’s why they call them specialists.

The weather at the moment is not forecast in my favour as there seems to be quite a few days where we will have low pressure fronts moving across the country and i know this will end up setting off some nasty attacks. The worst thing is knowing what the weather brings and how it effects me. I end up locking myself in my flat, not going out as i am too frightened of having a big attack whilst stuck on a bus or in the middle of a shop or town. Not to mention the fact that i can only walk about 100 to 150 yards and then my back starts to play up and my legs starts to go funny and become numb. I think the legs going numb is the scariest part of all and not knowing why it is happening.

Well for now there is not much i can really do about it and have to wait patiently for the results. I know for sure it has something to do with the nerves and that's why the CH (Cluster Headaches) have become worst than normal as i think its causing something to trigger the nerve that in turn triggers the attacks. It wouldn't surprise me if it wasn’t arthritis causing all these problems and the nerve trapping between the joints. I just wish i could just have a year out, with no pains or aches or anything. Just one more year to do what i can before my mobility starts to go completely. I am hoping it doesn’t come to all that and it’s something silly but for some reason, with all these problems going on, i know deep down i am in trouble and really need medical help. The worst thing of all….. is all the waiting for results and appointments, it’s driving me insane!