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.

 

 

Life hasn’t ended, its just different

I was chatting to my friend last night and he was saying how he wouldn’t be able to cope living how I now do. The pain, not being able to sit up for more than ten minutes before I am in pain. The wheelchair, bed bound, now ‘head lapses’. He would kill himself if it happened to him, and how much he admires my strength of being able to cope anf continue as I am.
Well, I wasn’t quite sure what to say to be honest! And being more honest I thought, jeez am I really so bad that he went to the extreme of saying he would commit suicide rather than be like me?
It’s a rather depressing thought, but one I thought about after. It’s not the first time someone has said how they admire the way I cope with things and take the mickey out of myself.
But I don’t think about it, I just wake up and deal with whatever symptoms decide to play around in my body that day. Some days are worse than others, and on really bad days when all I can do is lay in bed, wracked in pain, limbs frozen while others spasm I do think about what the future will be like. How I might not get a bit better and be stuck like it forever. That thought worries me, but then again before I got as unwell as I am now I used to worry about being like I am now. But it happened and hey, im still here and I get through each day as best I can. The odd part is, I’m used to being like this now, I honestly have to really think hard about how I used to be and how my life was. It doesn’t upset me like it once did, rarely when I do look back now and again and recall a certain event, used to have three books on the go at one time do I ponder upon it. I will think about it for a few minutes then it’s gone and I carry on doing whatever it was I was doing.

I don’t think about not coping or killing myself. Im not saying I havent had bad days where I have had enough of it all, im exhausted trying to juggle everything. I have, and still do and on those days I try not to put it onto others and retreat from everything until I feel more positive.
Coping is not something I think about, I’m unwell, I recognize this and just work around it as best I can. I don’t think about suicide, I have a son, a family a partner whom I love and they would be the ones to suffer if I did it. It’s the people left behind that suffer, I wouldn’t feel anything as I’m no longer here.
But I understand so much why people do, the pressure, life change, really bad health, seclusion, mental anguish is crushing not only to the body but mind. Especially as people still dont get the help they need because of the many many doctors etc.. don’t recognise these conditions. Ohh how that gets to me and makes me furious! I had better not go into it as this post will be pages long!
I just go with the flow, and not think about tomorrow until it happens. I dont think I’m brave, or strong or exceptional there are hundreds and thousands of people doing the same as I each day. I don’t feel I am in anyway special, nor that I should end my life. Life is a gift, something I now treasure and appreciate. I have no thoughts of not being here, or thinking that the way I am and my life now is not worth it. Yes it’s difficult, hard, emotionally distressing, tiring.. But to me life is still worth living and I have gotten used to things being this way now.
People who don’t suffer from any illness or disability can’t really ever imagine what it’s like and immediately say they couldnt cope with it. But 9/10 people would think very differently if they were in that position. Until they are, they will never truly understand how life becomes something you appreciate and cherish. I wouldn’t wish my conditions on anyone, but having them has changed me and my perception more than anything else could’ve. It’s easy to be flippant about something you have never experienced, it’s living like it that actually gives you experience and real opinions on the matter. I may be a shadow of my former self health wise but I am still here, still living and still appreciating life. I’m just living life differently, life hasn’t ended its just become a whole new way of living.