The point I knew I was unwell and how chronic condition sufferers are mistreated.

I remember the moment I realised something more than Endometriosis was making me unwell.

It was March/April last year, I am terrible at remembering anything, and I was due to meet a friend for coffee. I wanted to cancel as I felt I had the flu, but had already done so several times so I got myself ready and took the bus into town. I had to pop into a few shops before meeting him so I did so, feeling more and more achey and unwell as I went. I finally made it to the coffee shop, sat down in relief and started catching up with my friend. While I was drinking my coffee my hand started to shake, not just a little bit but full on spilling my coffee everywhere. My friend jumped up and grabbed some napkins and I joked about how I said some things were literally getting on my nerves. My hand wouldn’t stop shaking for ten minutes and I had to grasp it tightly with my other hand under the table for ten minutes before it calmed to a slight jerky motion. I was fine through the rest of the next hour, apart from the flu like symptoms and after saying goodbye to my friend decided to get the bus home rather than walk as I had intended. I got to a packed bus stop and thankfully put my bags down. I couldn’t sit down as the seats were taken, so I half leant against a wall and hoped the bus wouldn’t be long. I was feeling bad and needed to get home, make the tea, wash clothes, tidy up and go through some history sites before bed. But as luck would have it, the bus was late, very late due to roadworks a mile away. I stood for 25 minutes before I decided to walk home, it was only a 15 minute walk so I picked up my bags that now felt like they had bricks in and got going.

I had been walking for five minutes when I felt the already heavy feeling in my shoulders and back intensivy, to the point it felt as though I had breeze blocks on my shoulders. A massive headache came from nowhere, startling me to a full stop, then the shaking began, in the whole of my body and sweat poured out of me. I knew there was a bench just a few minutes away so I headed for it. My legs got heavier and heavier as I walked, as though I was walking in treacle and started spasming just as I reached the bench and literally collapsed onto it. I was a mass of blinding head pounding, body shakes, sweats, pain, spasming jerking movements and I cared nothing for the rain that had started but was thankful for it. I spent the next 15 minutes trying to control myself, pull myself together and relax. It was during this time that I finally knew something other than Endometriosis was happening to me, never in the 5 years I had it had anything like this had happened. It didn’t feel like my usual symptoms, I was pretty used to them and how to deal with the condition as best I could. This was something totally and scarily different, the symptoms, the way I felt, the quickness and intensity was something I had never known before. That was the moment I decided I would hound my Doctor for answers and not be fobbed off with the poor diagnosis of stress and low immune system I was given in the last couple of months.

It took me a further 10-15 minutes before I made myself get up and start walking home, my one thought was to get home,  I gritted my teeth and to this day I do not know how I managed to walk let alone make it home. The 15 minute walk took me an hour. An hour of constant stopping, dry retching, pushing myself, in agony of pain and burning muscles. I got home, dumped the bags in the hallway and staggered to bed where I took paracetamols, codeine drank a pint of juice and laid down for an hour not daring to move because it sent massive waves of pain through me.

From that day to this, not a day has gone by without pain, burning muscles, spasms, flu like symptoms and new and even more disabling symptoms. They are with me from the moment I wake, I wake in pain and stiffness everyday, to the time I sleep, even then waking me in the night each time I move or even breathe too deeply. I can no longer walk a few metres without fierce pain, muscle tightening, spasms and shakes. The simple act of making a cup of tea exhausts me and makes my hands shake and my heart and pulses pound. It seems absolutely ridiculous doesn’t it, laughable even. But to me and hundreds and thousands of others it’s painfully, destroyingly true. The jibes, comment’s, flippant thoughtless remarks that people make saying in more ways than I knew even existed that it can not be as bad as we make out is not only untrue, but incredibly thoughtless and emotionally painful.

I for one am not an attention seeker, a hipracondrac, liar who is pretending to be unwell to gain thing’s and peoples sympathy. I have gained nothing from being like this, I have lost many many many things and I don’t gain from saying I am in pain or feeling unwell. If I say I am in pain or feeling unwell then I really am, I have an incredibly high pain thresh hold and I am a very private person. Me saying I am in pain is telling people that today might not be a good day, I may need to totally rest up in bed, not be around to talk, message, do the washing, cooking or even manage to get to the bathroom. It is like a warning to people for what they might expect my next few days/weeks to be like, how I will be. All of us living daily with this condition, or others as I am are trying to do this, warn others, hope people understand and don’t mock us or dismiss us and what we are trying to communicate without thought. We are not attention seekers, we are living daily in a world of pain, life changing symptoms, emotionally difficult changes and reaching out to our family, friends, co workers, blog readers, media sites in the hope we will one day be believed and helped to get through the hell our symptoms put us through.

I hope one day to live in a world that not only accepts what goes on for us,  but also we receive the treatment we truly deserve and help get back some of the life we have each lost through negligence and ignorance.

 

 

Thinking, over thinking and changes

It’s been a good weekend so far. I have rested lots, eaten more and generally feel a bit better in myself.

As positive as I am about most things in life, I am far from the most relaxed, easy going and even tempered person a lot of people think me to be. I get very passionate about the things I believe in, also the welfare and care of people close to me and even people I talk to on social media sites whom I haven’t met but can understand how they feel. I had a terrible temper when I was younger, I shouted, screamed and threw things in utter anger and un ability of knowing how to get my point across. I couldn’t express myself properly and got so frustrated because of it. Having my son calmed it all down and I learnt how to be diplomatic and quietly but firmly put my point across. Why am I writing about this today? I am not a 100% sure but there is a part of me that is dwelling a lot on how I am, how I deal with things. How much being unwell has changed my way of dealing with things and how I feel about things.  I spend a lot of time on my own, due to resting, insomnia, painsomnia, not being able to sit in company for too long due to noise and light. So I go to my room and if the drunks in the park are being quiet or I am up most the night which is very often then I have a lot of time to think. Too much time really, constant thinking is no good for anyone. But it happens whether or not you want to, a thought will pop into my head and once it’s there I can’t ignore it so I dwell on it instead. Well, I do try to ignore it at times but that doesn’t last for long as it will continue to pop into my head until I deal with it. There is no distracting yourself doing anything, reading, watching t.v, housework, going for a walk, because these things are no longer possible. So I instead have to deal with the thoughts constantly swirling about, which sometimes is hard to do.

It’s an easy way for the dark thoughts to get through, to have them simmer in the background of an already dark cloud that is the loss of the things you can no longer have, the person you can no longer be. The future you had thoughts of being like, they all swarm around my head like an angry wasp hive. And sometimes all I can do is lay there, let them run through and deal with one thought at a time. Becoming unwell and daily fighting against the things inside you causing your illness with neither of you winning and ending in a constant cycle of battling against each other.

Illness forces you to face things, because you can’t run away from them or distract yourself and I don’t think this is always a bad thing. Don’t get me wrong, sometimes I often just want my head to shut the hell up and give me two minutes peace, but well, I really do talk to myself too often these days so try not to argue with myself and start down that road.. I think not being able to run, distract yourself makes you face your fears, happiness, reality and accept them. I know I have become a lot more less judgemental of people, not so quick to judge and pass them off before I get the chance to understand them and their predicements first. I am calmer, not becoming so impatient when a thing isn’t done to the standard or set time I used to expect. You learn to not obsess over the washing up not being done straight away, because the fact that a meal was prepared and eaten gives solice and renders the cleaning after not so important. The housework has to be done as and when, at first I used to get so wound up that the vacuuming needed to be done as the fluff drove me to distraction. Now I can wait until it can be done by whomever and not get so wound up. I am quieter, not because I am depressed for days or upset but because I have learnt a calmness within myself and towards others I never thought possible. I am kinder, more willing to listen and wait for someone to finish their opinion, sentence before rushing in and overriding them. I am more emotionally open, I tell people how I feel about them, things in general where as I used to bottle my emotions up and never let them be shown. I cherish things more, appreciate just waking up and being able to enjoy some time in the day that is pain free, no matter if it is just minutes. A few hours downstairs in the company of my son, family, gives me happiness for days after. The simple act of cuddling up to my partner and just enjoying the silly conversations or comfortable silences we share, that we are able to have and share is so special to me. There are no demands, no having to think of the next hour because by that time I could not be able to curl up and cuddle but only lay still in pain. It’s enjoying the moment, because that moment can be gone in an instant which makes the moments extra special and important.

I doubt I would of ever have changed like I have unless these illnesses had become part of my body, my life. I cannot think of something that would take over my body making me trapped inside my own head and making me deal with issues I had never had to before, or change my life and out lookout so drastically. I can honestly say, in a strange way I am thankful for the conditions I have for making me a better, more understanding, appreciative person. I may not like having them, like the fact that they have disabled not only my body and mind but my life. There are so many reasons to fight against these conditions, to curse them. But being able to be thankful for the good changes must be acknowledged and understood too. If I can only ever say I am thankful for the good it has caused me to become as a person and emotionally, then that will be enough to help me not only accept what has happened but to sleep more peacefully at night.