Understanding the Beast

By Martyn Russ

Over the last 14 Years i have had more attacks that anyone could possible imagine, 8 Times a day I would have to fight the beast for longer than an hour each time. Every time you fight the pain gets stronger. They say amputation with out anaesthetic is a close to describing the pain but i say they are way off!, its 1000s of times worst. The closes way of explaining is imagine all your toothaches and abscesses you have in your entire life all happen at once and not just for a while oh no 10 years on and off each day. And that strong nerve pain doesn't stay in the tooth area oh no!, It runs behind your eye then over the top of your head and into the back of you neck so making the whole left side of the face feel that same pain as the nerve of the tooth, Sharp, Pulsing, Agonising “PAIN”  Then comes the Battle with Depression Every Day saying it will End and trying to convince yourself there's an end in sight when in reality you know you are just waiting for the next. Scared to go outside in fear of the next attack, ashamed of people seeing you in this way wanting to help and only do good but there's nothing that can be done and it makes it worst with the attention it brings to you. You take all the medication you are told to and even out up with the side effects that make you ill just to try and live a normal day with no pain. Your health goes down hill rapidly as you are on strong medication all the time and aches and pains that wouldn't bother you start to become a problem. You find yourself having difficulty just walking to the shop or doing the cleaning. You slowly loose you self independence and sometimes wonder what's it all for. Its then at my lowest when i think is it really worth all this pain and agony and there s a little voice inside my head says “Yes, Martyn”,” Your worth more than this, this isn't the end its just a change at half time” I Can learn to live with the condition providing i have my 2 injections per day as that's seems to b working, i know there no cure but they can help in ways i just have to be strong and fight the best all the way to the end, i could even beat it!

Relying on your Injections to live a normal life, i understand now….

I know i have had a lot of attacks just lately and it started getting worst a couple of months ago when i was having the allergic reactions all the time. I ended up having to go into the doctors twice for a prescription for more injections as i was only on half dose and didn't want to cost the system too much money with me not using them and stockpiling (i wish i had). After having 2 bad months and having to increase my dose i told my doctor to put them back up to 56 a month (2 a day) ready for the winter as i have been bad lately. She did this and i thought everything was sorted.

I go into my local chemist who takes care of all my medication and all my repeats so i don't have to worry about them or miss medication. They also help to watch what i am tacking and even dose out the injections weekly so i can have 2 per day per week and don't get tempted into taking more that i should.  They watch all my medication closely and even notice when something is wrong with me so i have stayed with this chemist from the beginning. As i approached the counter the woman said ” Martyn; is there a reason why they would stop your injections”; “Certainly Not” i said d “Well there are NONE on your script for the month.” . I contacted the doctors to find out my doctor is on leave and somehow a mistake had been mistaken so they would do a script for 28. Me thinking they meant 28 boxes , 56 injections i said “OK”m i went to collect them. I was horrified when i saw the script.

I Rang the doctors back and was basically told there was nothing i can do and my doctor is away on leave and i would have to wait until she came back.  I am fed up with these excuses all the time something goes wrong with my medication if it not the injections if its the laxatives, or something else missing fro the script, I ended up ringing through at lunch time and spoke with the doctor in person and when i explained the problem he agreed to write a prescription for 56 injections and it will be waiting there the next day for me. Now why couldn't they just do that in the first place.

This last week has been really stressful and a lot of things have been going wrong. My PC broke but managed to fix it and now am running Windows 10 witch isn't that bad really when you get used to it. Tried to order a screen for my mobile as i smashed it and its going to take 2 weeks to come and that's annoying as its like looking at a cracked mirror all the time even though it still works. The weather is looking good this weekend so i might get out and do a bit of fishing and see if can get a bit of fresh air. My mate Brian has agreed to drop me down and pick me up he may even join me yet depends how busy he is. Lets hope the weather holds and so does the health. Fingers Crossed

More Up’s and Down’s Than a Yoyo !

Every time i think i am starting to get better and the attacks reduce and the allergies and side effects of the medication start to ease and stop  along comes a weather front to kick off the attacks all over again. Why the weather seems to have so much of an active roll in why my attacks set off is beyond me understanding but i can only assume its when we get low pressure changing to high or high changing to low. You mustn’t forget that cold is also a major factor of my attacks as even though the weather is still warm, all it takes is a cold breeze to blow constantly in my left eye for a period of time and it set’s off my attacks. When winter comes i literally become a hermit and hide away from the out doors due to this problem

This hiding away has become a big problem over the last 2 years as i no longer have a social life and only a few real true friends that visit me other than family. As i tend not to go out anymore it seems like everyone has drifted away. My good friends take time out to come round and see how i am doing  even if it is only once a week it gives me that incentive to try and fight the beast and get out and about a bit more. I have really struggled the last 2 years to even get out and do some fishing my health has been so up and down like a yoyo its crazy. I have managed a few trips and find i feel so much better for a while afterwards due to being out in the fresh air for a long period really does help.

Well at the moment i am starting to feel a little batter than i have been despite getting some bad pain in the back and chest area. I think the chest is the hernia playing up but it is still scary and you always feel the worst. I am hoping to get out and get some fresh air this weekend despite there going to be showers and my step father Brian also wants to get out and do some fishing so we planned a trip to the local lake and give a bit of Carp fishing a go and see if we can catch some lumps. Fingers crossed the weather wont be that bad and is currently following the same pattern as sun during day with the odd shower and a little cloud. This is perfect fishing weather.

I have been trying to stop my Omeprazole so i can get some blood tests done but can only manage to go 2 and a half days with out then i get so bad i throw up loads of acid and feel terrible. I need to go 2 weeks constant so i can get the blood tests done so i am going to talk with the doctor on my next six week appointment and check up to see what i can do about it. I only have to wait till Monday so its not too bad i haven't got to wait weeks for an appointment when they are really busy. Lets hope she can figure something out and why i keep getting allergy reactions every now and again.

Things can only get better…

Once again i have spent the weekend with no sleep at all due to pain waking me up every time i think i have dropped off to sleep sharp pain will cause my eyes to open and then i have to move position to stop the aches in the bones and the back. I am still getting allergic reactions or symptoms that imitate an allergic reaction and no sign as to what is causing them. They seem to have eased a little for a while so i am hoping they will eventually go but it still doesn’t answer what happened to cause them in the first place.

On a lighter note, my bowels have finally started to work again properly and i am going to the toilet as regular as i used to. Lets hope this improvement stays and i don't have to go through the nightmare of bad constipation again. I am still convinced it was the medication that caused it all in the first place and because of that i now have to take laxative tablets and drinks everyday in order for my bowels to work normally. Well while they are working ill keep taking the medication as it must be working.

Well i have started to feel a little better than i was the other day and am not having so many attacks again. I am hoping they are on the decrease again but you never know with this condition. I am hoping next weekend to get out and do a bit of fishing with my best mate and hope we can spend a few days out in the fresh air catching fishing and doing something that i love. Fingers crossed that the weather holds and we manage our trip.

Back to the old routine! Lets hope it gets better soon...

I haven't been able to update my blog for a while due to me having an attack whilst on the computer and knocking a whole cup of coffee over my keyboard resulting in the keyboard no longer working no matter how well i cleaned it. I could still go online using the mouse to control the system but was unable to type anything or update my web sites. The keyboards are cheap enough but when you are feeling really unwell and unable to get out to buy one it makes life a little difficult. Thankfully my good friend Brian brought me over his spare one the other day so i could get back online and get my sites back up to date with everything that's been going on.

My health has gone down hill yet again despite me starting to feel better last month and having a couple of months with very few attacks. For some unknown reason my attacks have tripled again and i am in a lot of pain all the time with my head, neck and back. Every time i have a cluster attack my back ends up being in pain for the rest of the day and every time i move it makes it a lot worst and can also set off further cluster attacks as the pain travels up the side of the spine and into the base of the neck. Also i keep breaking out in cold sweats all the time for no reason. Usually just before an attack happens i end up breaking out in cold sweat as though someone has turned on a tap and suddenly i am soaked. This time i am getting the sweats but no attacks  but when i do get an attack it doubles the sweat output and i end up having to change my clothes at least 4 times a day due to me constantly sweating.

I went to the doctors and told her what was happening but after checking me over she couldn't fins anything wrong that would cause it and was very confused as to what is going on. She has booked me in for some blood tests and said there is a possibility of an infection or bug but nothing seems to be showing it face as of yet. to add to the discomfort i have now again started to have allergic reactions to something unknown and my eyes are constantly sore and the same with the inside of my mouth. i think i am starting to get oral thrush again due to me being run down and the hiatus hernia i have causing problems. Trying to find out what keeps causing the symptoms has proved impossible as it just seems to come and go as it pleases and even with the help of antihistamines it still doesn't clear completely and i can constantly feel the soreness inside the mouth.

Again i have been missing out on my fishing as due to my health and also the weather being against us i just haven't managed to get out and go fishing for the last couple of months. I really need to start making the effort even if i am still feeling a little ruff and force myself to get out at least a couple more times before the colder weather comes and winter is again upon us. I have had to increase my injections early this year from 1 per day to 2 per day once again to control the attacks and i know when the colder weather comes i wont be able to get out as much as i could in the summer so i really have to try and make the most of any good weather we have left before the icy winds return. Lets hope my health starts to improve a little so i can start to plan a few trips and get back out in the fresh air, but when you are battling the beast on a day to day basis it becomes difficult to do the most simplest of tasks. 

The Fight With the Beast Continues....

As usual just when i think things are starting to get better and i am slowly improving something comes along once again and makes life a living hell. As i was just starting to feel better we thought it was time i should try and take my Sodium Valporate again to try and help control the attacks but unfortunately i have gone and ended up feeling ill after just one dose. An immediate reaction and me feeling as though i was going to die resulted in me not taking it ever again but it has now kicked off the allergy side effects as it did before and again i am struggling with a small dose of oral thrush, nettle style allergy reaction to my arms and hands and lumps on the back of my tongue. Pain in both sides of my neck causing temporary ear ache every now and again and also keeps setting off my cluster attacks making each day a living hell having to deal with 4 or 5 attacks and only being able to abort 2 is very hard when its become every day for the last 3 weeks. 

I no longer have any spare injections and am surviving day to day having to collect new from the chemist every few days as they are in shortage and hard to get hold of at the moment. I am taking medication for the thrush with some oral mouse wash and taking paracetamol but that doesn't even touch the pain. Every attack i have drains more and more energy from my body and sometimes i wonder just how much more can the body take. The attacks feel like they are getting stronger every time i have one and no matter how much i try and stay calm and say to myself don't worry i always end up becoming religious wishing to god to end the pain finally and let me be in peace. I wonder how many attacks do i have to have before it will finally kill me and how much more pain do i have to suffer. I then try and think of people worst off than me dealing with pain every day and wonder how do these people do it. How do they struggle on knowing each day is going to be just as painful and if not worst than the one before. 

It's not until you actually suffer and cluster attack you realize just how much pain there is. I have had abscesses, broken bones, stuff stabbed in me and cuts all over from a motorbike crash where i had the skin taken off me down the right side of the body when i slid down a road. I have never experienced the level of pain a cluster attacks gives you. You actually want to smash your head open and pull out the pain its so bad and you pray for death to come rather than wishing for an angle to bring a cure. This has to be one of the worst conditions i have ever known and to have no cure, no treatment and to say its never going to get better with out the help of strong medication is a hard pill to swallow sometimes.

I am just praying for a break at the moment and hope that there will be an end to my attacks for a while at l;east a few more pain free days so i can get back out and do a bit of fishing as with everything going on and my health up and down like a yo yo i am finding i am missing out on my fishing trips again so i need to do something about it and try and get a few trips in before the weather becomes cold and the attacks really start. When winter comes and the winds get colder the attacks will be more frequent and i know for sure i will only be able to get out once or twice in the winter months so have to make the most of the nicer weather at the moment. Fingers crossed the attacks will start to reduce again for a while.

Back to the Old Routine... ATTACK after ATTACK !

They do stay sticking with a daily routine is better for you and helps you to manage things such as depression and anxiety but when the routine also includes an attack from the beast i would rather not have any routines all together. Just when you think things are starting to improve and you are on the road to recovery the beast comes along and kicks you square in the plumbs. Just when i was starting to enjoy a few more days being pain free something had to spoil it. I can only assume its this crazy weather we have been getting for the last couple of weeks. One day is pouring down the next its hot and humid and the next is storms, it just doesn't seem to want to settle. Not only is it making my head play up something chronic but it also trapping me indoors.

Scared to go out in case of a big attack is also something that has been added to my routine and no matter how much i try and stay positive and try to get out and about for a while something seems to stop me. If its not the head and the attacks its the back and the cyst in my lower back playing up. Then when i think things can't get any worst the bowels and stomach decide to join in and have a party of pain and discomfort. What makes things worst is that you have to take medication in order to deal and control these problems and that medication starts problems of its own so you just can't win. If i take paracetamol, or any kind of pain killer to be honest, i end up severely constipated and problems with my stomach and bowels and due to the cyst in my lower left back i end up having trouble opening my bowels as i can't seem to use the muscle on the left side for some reason linked to the cyst itself as when i try it really does hurt.

I have been wanting to get out and do some more fishing the last few weeks but the weather has been against me. Every time i build myself up to go and get organised the weather has changed for the worst and started to rain with high winds. I don't mind it raining when i am fishing i just down want to set up the bivvi and gear in the rain as it will remain damp all the time i am fishing and i will end up catching a bad cold to go with everything else i have going on. At least if you set up before the rain you can nip inside if the skies open and keep dry and continue fishing. I am hoping that this bad spell will shift this weekend and then during next week i can get out and do a bit of fishing at one of the local lakes even if its just a quick day session i need to get out and get fresh air.

I am now waiting for my appointment to see my doctor again as i have been getting some really bad headaches on top of my cluster attacks on the opposite side from my attacks and ear ache on the right side. I have also noticed that i keep getting hot and cold flushes and think i could have an allergy starting again. It could be something to do with the Sodium Valporate i keep trying to take. Every attempt to take the medication has resulted in me becoming very ill or having an allergic reaction to something that we don't know is causing it all. Again i have had to stop taking that medication on the hope that my health will improve again and it looks like i may have to go back on the Pregabilin for a while until i can get to see my specialist at the hospital. I need something to help me battle with the attacks as the injections alone are just not enough. All i can do for now is try and relax and wait until my appointment comes around and hope that the attacks will ease off again soon and i will get some more pain free periods.