Being alone outdoors is different to being alone indoors…

Just when i think things are getting better and my attacks are at the lowest they have been in years i end up getting rushed into hospital with severe chest pains and threat of angina only to be cleared to find out it could be some kind of infection but i have to wait as the normal bloods didn't show up anything yet i am having symptoms of an infection. Cold sweats on and off all day soaking me, sore eyes , pains in the muscles, thrush at the back of the tongue showing the body is fighting something. The have sent bloods to the serious infections unit at the hospital of wales and i have to wait on results . I don't like the sound of that but they could be clear. The doctors say if they come back clear then i am to be referred for a colonoscopy to find out why the bowels are having so many problems and hopefully find out what's going on.

They also agreed that being type 2 bipolar doesn't help as i tend to suffer high anxiety which will make my symptoms feel and be twice as bad as normal so i have to be careful and watch my stress levels until they can find out what is happening. I am booked back in to see the neurologist on the 7th of December so its not long to wait and i am booked back in to the doctors on Thursday to see if there's anything they can do the relieve the symptoms. Being rushed in Saturday morning with the chest pains really shook me up and scared me. It just seems like i have had so much bad luck with medication its crazy. Reactions to so many different drugs is just not normal and i believe its down to the hiatus hernia. It seems ever since that started things have become slowly worst and my health is very low.

I am doing as much as i can to feel normal and live a normal life but when you are in pain all the time it becomes hard. I try to eat normally but struggle to have 2 meals a day as it keeps trapping as i swallow and almost chokes me and i end up having to massage my chest to help it pass through. When i wake in the mornings i can sometimes find a mouthful of acid greets me and end up running into the bathroom spitting before it makes me sick and have to use Gaviscon to ease it. Then there is the daily cluster attacks which are low thank god as i don't think i could cope with a full bout of attacks and feel this ill at the same time. I still have to deal with a few though and its hard. My body feels run down it needs a holiday. I usually go fishing now days to chill out but when you are in pain and the weather is cold it makes it 100 times worst and there is no way i could do it at the moment. maybe if the back pains would ease a little then i could go and that would do me the world of good.

I find when i am out fishing in the fresh air my body always feels stronger for it. Even though you work hard sometimes to catch those elusive carp, when you return home having captured a couple and released them back into the lake to fight another day, you feel revived and full of energy and that's one of the reasons i love fishing so much. Being on your own with your own thoughts out in the wilderness or at the side of a park lake is so different to being locked away on your own in your home. You have nature as a companion and feel so at ease its great. OK fishing can sometimes be a bit stressful when the fish aren't biting but that's the fun of the sport. Can’t wait for my next trip!

There is light at the end of the tunnel, I can see it!

Once again i have been lazy not updating my blog as regular as i would like. It’s not because of the attacks so much but more down to the fact of the pain in my back when i sit at the computer to type. The last month has been a very strange one as i have finally stopped suffering allergic reactions to god knows what medication and actually started to feel well for a short period and then all of a sudden the back pains have started and haven't stopped since. I am happy to report that my attacks are at their lowest they have been in years and i am managing to control them happily for the time being.

Why all the pain has suddenly started in my back i can only assume it is from the aftermath of the attacks. being a chronic sufferer and having to deal with several attacks per day must do some sort of damage to the body after a period of time. The nerve down my left side is very tender and i can feel a line right down the left of my back. When i am sat in one position for several minuets the bottom of my back right at the tail begins to hurt and then start pain radiating outwards towards both sides of my lower back. This is a very annoying and uncomfortable pain but when i move a bit and start stretching it tends to ease off and go away but then i get secondary pain higher up the back behind the left shoulder blade.

I rushed to the doctors the other day as every time i took a breath i was getting a stabbing pain in the left shoulder blade on the back. The doctor feels it is the group of muscles on the left side of my back going into spasms. Now its funny he should say that as when i was rushed into hospital the last time they said i was getting muscle spams in my neck that was also causing me major problems and also setting off attacks. Its strange how the 2 different doctors have come up with the same results. I can only think that the muscle problems i now have in the left of my back have been caused by having so many cluster attacks every month.

I was supposed to see my specialist at the start of the year and it has taken until now to get an appointment with him. As he is the head Neurologist at one of the biggest teaching hospitals in South Wales he is very hard to get hold of and even harder to book appointment with but finally i have a date. A letter came through the other day asking me to ring and book the appointment and thankfully they have given me the 7th of December so its not long now till i am able to update him with everything that has gone on with me over the last year. I have had so many different problems all caused either by the after effects of the attacks or by side effects of medication.

Also the problems i am now getting with the hiatus hernia, also caused from the side effects of medication, are really getting to me and i am finding i can’t eat as much as i used to and i find i am chocking on my food on a regular basis. Not to mentions the amount of trouble i have sleeping due to wheezing and acid build up in the chest if i lay flat and the back pain if i lay sat up. Sometimes i wonder how on earth i am still alive and kicking but i promised myself i would fight this illness with every breath i have and i wouldn’t give into it even though sometimes i can honestly say i have prayed for the end to come.

Whilst i am having a down period from my attacks i am slowly able to catch up with house work and other things i have been putting off for months due to the pain and agony all the time. Slowly i am gathering some sort of quality of life again and starting to think i will be able to get this under control but i cant go through any more allergic reactions to medication as i think the next time may end up being the last. I just hope my neurologist is able to come up with some ideas and other ways in which i can get these attacks controlled once and for all.

Strange Weather causing Constant Attacks…

when i was told i was a chronic sufferer and would have to continue to put up with daily attacks and with the help of medication i would be able to control them. So far i have been unsuccessful at finding the right medication for me as everything seems to make me very ill and the kind of medication required to control these attacks is extremely strong. So far the only things i can take are the injections and regular pain killers sometimes boosted with Pregabilin but even that causes me wind and bowel problems. My health has been on and downwards spiral ever since the first allergic reaction to the first medication. Now i am waiting to see my specialist but its coming up to 8 months since i saw him last and i need him to give me help through the rough times especially with this insane weather we have now and again.

One minuet the weather wants to be sunny and hot then suddenly its pouring and cold and then sudden changes back. I call this weather yoyo weather it plays hell with my head. Something to do with the high and low pressure changes and electrical charges in the air at this time seems to trigger my attacks. The worst time is when they come at 3 am in the morning and you wake up not even feeling tired to instant pain. I get days where i am scared to even sleep as i know i am going to wake up and face hell in the morning. I end up having naps through the day so i don't sleep so much during the early hours but all this does is tire me out and make me feel weak after doing it for weeks.

I then change my sleeping pattern to try and be awake during the early hours and sleep during the early day. If i could get into that habit it would be brilliant for carp fishing but for some reason my body doesn't let me. After a while it just gives in and i sleep until the next attack and the cycle begins again. I have more pains and aches in my body now days i feel like i have played a rugby match each morning i wake up its that bad. The attacks have taken their toll on the body and its paying the price. the left side of my back i get constant pain up in  a line and behind my shoulder all the time and this is from the actual attacks as it links to the neck and the nerve itself. The pains in the lower back come from a small lump i have at the side of my spine they say is a fatty lump and nothing can be done about it but i don't believe that. Surely they can get rid of it some how.

I get a lot of chest pains and aches in the muscles in the chest from my hernia and the amount of time i choke on drinking liquid or trying to eat is crazy but i manage. I have to keep taking Omeprazole as i get terrible acid otherwise and have even tried to stop taking them for 2 weeks to have tests done and couldn't manage 4 days. My attacks have just started to reduce thank god and touch wood , but that wont last i just know it. I have just got a memory foam layer to put on  my mattress to help with the back pains to see if its anything to do with my sleeping why they are playing up so bad. I hope it eases off soon or i am going to have to go see the doctor early again. I am even having trouble walking to the shop back and forth as the pain in the back always ends up worst and sets off my head attack when the pain reaches the neck. I am hoping to book another fishing trip again soon as my last one was cut short due to idiots setting fires around the lake. Fingers crossed it will be soon!

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.