After my scare yesterday i didn't get any more attacks as i decided to have an early night due to being so exhausted after the big attack. I have woken this morning with some strong shadows but the neck is no longer sore and the back is behaving itself so far. I am praying that the heat doesn’t set any attacks off today as i don’t want to go through that experience again. Even though i have had plenty of rest and managed to sleep through till 8am this morning , witch is amazing for me as i am normally woken by shadows or the beast at aroun4 or 5 am, i still feel weak. It’s as if all my strength has been zapped away and i am struggling to do small physical jobs such as hoovering the floor or standing washing dishes at the sink. My legs shake under strain and my muscles are aching like nothing i have ever experienced.
I think it just a side effect of the attacks and that as the day goes on my strength will slowly return. I have been like this a couple of times before after the attacks but its normally during the winter months when i get around 6 or 8 bad attacks in 24 hours. This takes a lot of energy to cope with and drains you by the end of it. Too feel this way the morning after just one big attack is rare. Mind you the attack was one of the biggest i have every experienced so far with this illness and i am sure i will experience more before its over and i eventually get a solution to the beast and a way of keeping it asleep so the attacks don’t appear.
When i was last at the specialists office in the hospital we spoke about the medications and what different things we could try to stop the attacks. the Pregabilin worked and the Oxygen helped but the Verapamil made me very ill and resulted with me having to be rushed into hospital due to an impacted bowl and hernia. He told me there are other medications we will be able to try so if something doesn’t work not to panic as we will try something else and eventually will find something that works for me. i just wish i could see him a bit more than just once every 3 months. I so want to get this condition under control as at the moment i am just a slave as it dictates when and where i can go out. With the attacks still appearing when they feel like it out of the blue i tend to shut myself away during these periods and when i do get good days i go fishing to take my mind of everything that is going on.
At the moment we are experiencing a heat wave and one of the hottest summers we have had in quite a while and instead of being out and enjoying the weather i am stuck indoors pulling my hair out and climbing the walls. I do get some stress relief by using the computer and of course by typing my blog but this is only for a short time as i tend to start to get pains in the back and the neck if i am sat at the desk for too long staring at the screen for hours. Even if there were things for me to do and places for me to go i still wouldn’t be able to as the attacks can come at any time with out warning and it doesn’t mater even if i am taking all precautions they still seem to appear. I don’t like people seeing me in this way especially when it’s a big attack.
Most that see them tend to panic but those that do know also seem to suddenly change as they watch me in pain rubbing my head vigorously just trying to control the pain level. They watch my face drop and the constant “are you ok?” questions just bounce around your head and annoy you. You don’t mean to be rude or nasty or even ungrateful as you know inside they only mean well and its what you would do if you saw someone in pain, of course you would see if they are ok and if there is something you can do to help. Unfortunately, when you are getting pain levels that are almost rendering you unconscious, you tend to snap at them even if they are family and the ones you love. This is one of the worst conditions i have ever known and because its so rare and there is no actual cure i would class it up there with what i call the “black illnesses” such as Aid’s, Cancer and Strokes.
On a brighter note, thinking about cancer, my mother has now had her operation and the kidney that was infected with cancer has been removed so she no longer has the cancer in her body/ This is great news however she is having a bit of a problem with the kidney that she has left as it seems to be in shock and is being lazy. It does take time for the body to adjust and the kidney to start to do all the work but for some reason its being too lazy and her kidney function is dangerously low. They are watching her like a hawk at the moment, she said, and will decide what to do after her next set of tests to see if there is any improvement. She could end up having to have dialysis if the kidney doesn’t buck up its ideas any time soon. I personally think it will pick up and she won’t have to have such drastic treatment, the trouble is she doesn’t rest as much as she should do and amazes me just how much strength she does have.
Well I have had a good moan and am thinking about ways i can stop the attacks from building. Its crazy as if its not the extreme cold setting them off it’s now the extreme heat and bright light that does it. I have to admit i don’t get anywhere near the number of attacks at the moment compared with what i normally get in the winter. I have to be grateful for the small improvements at the moment. It amazes me that it’s taken over 10 years to diagnose the condition and for them to become daily instead of every couple of months. I have seen so many different doctors, i have been told i am crazy and its in my imagination and was just confusing migraines with normal pain, I was told i was crazy and schizophrenic, I was told it was a blood clot from the crack in the head i had years ago, I was told it was the nerves in my teeth and had to have them all pulled out in a nightmare operation.
Then finally , when the attacks became a daily feature, i actually had attacks in front of the doctors and sceptics and they actually sore what was happening. It was a “locum” doctor that helped me out with the first referral to neurology and to finally meet Dr. Pickersgill who saw exactly what was happening to me and was if he was inside my head. He described my pain to me as if it was his own and exactly what i do to cope with it. He was the only doctor that actually knew what was happening and diagnosed it within 10 minuets of meeting with him. The day he actually diagnosed my condition was a very emotional one. At first i just listened to what he was telling me and then became very quiet on the journey home with my mother and step-father.
When i was at home, it was a couple of hours after, i suddenly just broke down and burst into tears. I couldn’t believe this was happening to me. In one way i was relieved to know i wasn’t loosing my mind and it was a real illness but at the same time i was devastated just knowing i had an incurable illness that could get worst or better depending on the medication. Also the fact i would be on strong medication for the rest of my life in order to control the attacks, stop them happening, and help me to live a normal life. It was bad enough that my bi-polar disorder was playing up and the depression side of it was causing me havoc.
Its hard to explain, the only way i can think off is…. if you were making yourself breakfast and instead of pouring the milk on the serial you miss and get it overt the table… a “normal” person would excuse themselves and wipe it up but when you have bi-polar… you breakdown into tears and run away from it as you can’t cope with what happened even to the extreme that if someone tries to talk to you about it you lash out or hide away so you don’t have to explain yourself. This is the only way i can think of describing what happens to me when the bi-polar kicks in. It could be spilt milk as i explained or a form you have to fill out, you suddenly become overwhelmed by emotions and you crack up there and then. I have only been getting bad from the bi-polar disorder for the last 15 years i would recon. I used to suffer mild bouts of it but was able to cope with them or my mother and/or wife (at the time i was married) would help me cope.
The last 15 years have been crazy and its not the depression that you have to worry about its the “high” periods. I become so unrealistic i can suddenly take on the world and do stupid things, blow my money and end up in real trouble if i don’t get help or someone spots it before i fly of the handle. The only person i know that can spot a high period was my mother. After so many years suffering i now have certain things that i do that warns me that its about to happen or is happening. The same with the depression side, i have certain tricks that i have learnt over the years that help me to recognise when i am down and that way i am able to cope at the time.
Well its another hot day and we have more and more sunny days forecast for the next couple of weeks so i have to try and get out and enjoy the sunshine while we have it but try not to over do it and cause me to have attacks. I will try and get out and do a bit of fishing maybe on the weekend if i can arrange it. I am just praying the best stays away and i get s few more pain free days before all this nice weather is over and gone.
