Its actually nice to be able to lay in bed till 8am in the morning and not be rudely awoken by the beast in the early hours. Its not until you have an illness like mine that you actually appreciate the time spent when you are not in pain. It’s like it takes over your life. All you can think about and talk about is your condition and the attacks you get. Constantly battling with pains in the neck and back and hoping that the big attacks don’t develop. Always scared to go out into the cold weather due to fear of the beast returning and you ending up with non stop attacks all day long. I am sure the new medication has had something to do with the sudden decrease in the amount of attacks i am getting. Even with the Pregabilin and Oxygen i was still getting between 2 and 4 nasty attacks in a day. Now all of a sudden i am looking at between 4 and 6 a week. Its a huge difference in my condition and the attacks seem only to appear when the weather is at its coldest or i do something stupid like carry too much weight in the one hand and strain my shoulder. I don’t seem to be getting the smaller attacks any more and only the big ones start when in extreme conditions.
If this continues it is starting to look like i will finally get my life back and get this beast under control. It will make a change for me being in the driving seat rather than the attacks dictating what i do all the time. I have had a bit of an attack this morning due to the fact that i let the gas run out with out turning the emergency on so when i woke up the flat was freezing cold. Normally if the flat drops in temperature i would be up at 2 or 3 am in absolute agony and would get attack after attack. I was lucky as i managed to stay in bed and didn't get any sign of an attack until i woke up and came into the living room. Then the beast was beaten back by the injections and the oxygen. I could be completely wrong and it could just be down to the time of year again and due to the fact that the weather is now slowly improving as we go into Spring and Summer. It seams i go through the same cycle every year. It starts of extremely painful with attacks constantly bombarding me through the cold days and the winter weather and then as it warms up the attacks become less and less only to start all over again when autumn comes. I am rally hoping that this time i am wrong and it is the medication that is helping.
Its so hard to tell as these attacks are so unpredictable and they always seem to have a mind of their own. Well fingers crossed that this is the start of good year for me and i will now become in control of my condition. I have to arrange an appointment with the ECG department to get some ECG readings done on a weekly basis so they can increase my medication as they won’t until i have had the ECG reading done. They are doing this as the Verapamil is normally used for heart attack patients but also seems to work with CH sufferers as well. the only trouble is i have to travel miles in order to get the ECG scans done. I don’t understand why they can’t use a scanner that is closer to me but even when my mother rang the specialist and informed him what was happening he seemed to become very angry as to why the doctor couldn’t arrange one closer to home. he has stated that if i need an ambulance to get there then i just have to tell them as a bus journey, on two busses for over an hour and half might end up in a painful attack as it normally does.
