Priorities

I may sound a bit harsh, but I am getting more and more annoyed by people who over dramatise the smallest of things.

I’ve never had much tolerance for it, I’ve always seen it as attention seeking. But now it’s become a huge annoyance when people exclaim, oh I’ve got a headache I hate my life…
A headache? Really?? Your life is so awful because of a headache.. You poor thing!! Don’t mind that there are people in the world dying of starvation, war, diseases, you have a headache! You poor thing! Wow, life must be so awful for you! ……
No.
You have a headache, take some paracetamol and hush, stop attention seeking and get your priorities in order! I know it’s gotten worse since I’ve become more unwell, and I do find myself wishing the only thing I had to worry about was a headache, being late for an appointment, can’t afford the new shoes I’ll simply die without..

I try not to get annoyed as this only causes me to use energy I really can’t afford to waste. I try to put in place the techniques and understanding I learnt when doing psychology, that each person is different and it may not be a cry for attention but one of help.
But when you’ve spent a night up in agony, being sick due to pain and seizures, can’t walk, feel certain limbs and unable to urinate properly my understanding and patience goes out of the window.

I do feel bad about this at times, that I am being too harsh. That I am becoming less intolerant and quicker to anger. That I need to step back and understand everyone is different and some people don’t cope as well as others. But I tend to get only half way through these thoughts and then become frustratingly angry. I delete the person/newsfeed of that person if it’s happened on numerous occasions, and that helps.

Am I the only one who feels this way? Am I being too harsh? Or is this a reaction that many people with chronic conditions feel?

I sound really angry today! But I’m actually not, far from it. I’m happy, content and at ease. It’s just a bug bear of mine, one that is occurring most days and I needed to get it out 🙂
I am a lil poorly today, but I expected that after yesterday. But again it’s not as bad as it once was, I’m not laid in a dark room unable to move or think.
I am going to make some necklaces today and a bracelet for a niece of mine. She’s put in an order for a butterfly one 🙂 here’s some pictures of what I’ve been making, they are also going to be used for bracelets, several different types of different coloured skull heads, butterflies peace signs and different coloured cord.

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This will keep me busy and out of trouble for a few hours ;D

Phone calls, phone calls and more phone calls

Later post today as I have been trying to sort things via phone.
My specialist got back to me today and has upped my dose again do I’m on 150mg twice a day. She’s so nice and helpful, explaining everything without patronising, making sure I’m ok with everything that’s suggested and she’s phoning me next week to check my progress.

I phoned the council and apparently someone is definitely going to get back to me this time.. I won’t hold my breath though as I’ll probably die in the process!

I didn’t do much tidying yesterday as my legs decided the were gong to really play up and make me walk like I had four joints in each leg all moving in different directions. Honestly I looked ridiculous, I was stumbling, holding onto any surface I could and unable to stand straight. But it was comical too, I have no idea how my legs could move in so many directions at once, I could make a fortune at a circus!
They are slightly better today, still bandy but I’m stumbling less. They hurt, ache and I feel like my muscles are swollen which tests show they are so it’s no surprise! Yet it’s not bothering me too much, it’s odd how you can get used to symptoms that would send others into panic. It doesn’t faze me at all anymore, I just adjust myself to what symptoms are happening that day. Thank goddess really, this time last year when I woke with legs that wouldn’t work made me deeply scared, knowing and accepting is easier and less damaging.

The blood tests I had last week weren’t for the rheumatologist, I phoned to ask and rearrange them for next week. I’ll ask my doctor about it onFriday during my phone appointment. It must of been been at my doctors request, I can’t imagine the nurse came round just to take my blood for funsies. I may have vampire blood but the crap that’s in and not in it makes it useless so no good for the dodgey blood selling market.. 😉

All in all I’m tired off phoning people again and sorting out the stuff they should be doing again. I am resting for the evening now, electric blanket on full, legs straight in bed and 150mg of painkillers which will hopefully help. Or make me sick, time will tell.. Oh the joys! 😉

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.

 

 

Don’t judge if you don’t understand

Yesterday wasn’t a good day health wise. I woke with a jolt as I must have turned in my sleep and at the base of my back the pain was eye watering. As the morning wore on the top of my legs to my knees became numb and from the knees downwards major pain and cramping. This lasted all day and by the night my whole body was throbbing with pain and spasms until the early hours when I managed to sleep for a few hours. My back is still hurting and my legs are starting to pain again so it looks like another day of similar symptoms..

I do wonder if once you have a chronic condition, others come along too. I started by having endometriosis, then M.E then Fibromyalgia, and this seems to be the case for many people, they have two or more chronic conditions. Does the damage the first chronic condition causes makes it easier for other conditions to develop as your body is at a low point? Or are all of these conditions simmering away under the surface and then gradually make themselves known? I have no idea, but now I have thought about it I will have a look on the net and see if there is any link.

I have had people ask when I tell them I’m not working at the moment due to the severity of my conditions ‘but, what do you DO all day..? This is a question that I find not only idiotic but incredibly rude and degrading. I’m not the sort of person to feel I need to explain myself to anyone, as long as I know why I am doing something, living a certain way and I am not hurting anyone, I don’t feel answering such questions is a top priority. I usually say that with chronic conditions every task takes twice or three times the time a well person will take to complete. If they become genuinely interested in my conditions I am happy to talk about the basics of it, but if that same sanctimonious nose is still in the air I suggest to them that maybe they should learn about something and how it affects people before they judge anyone. People like that annoy me so much, making judgement calls and looking down their nose at you without knowing the facts of the subject and expecting you to explain yourself to them and prove you aren’t just a benefit bum. I don’t lower myself to their level, I refuse too, but sometimes I struggle not to tell them to.. well, to go something themselves… but I don’t because they know then they are getting to me and are winning their ridiculous notion of being right. 

It’s bad enough we aren’t receiving the treatment we deserve and respect from the medical profession, let alone from people in everyday life. As I wrote before, my friend of 23 years said something very patronising to me when I told her about my M.E and hasn’t been in contact since. But for complete strangers to judge you, someone who doesn’t know you, how you were before you became ill, anything about your conditions is to me someone I will not explain myself to or have anything to do with.

I wasn’t always a sick person, I was an able and active part of society and life. I could walk, run, have a body that didn’t spasm and seize, didn’t have massive pain in every part. I could wake at 6am get straight out of bed, and not fall back into it until 3am when my day was done and repeat that process every day. Who I am now, how my body and health is now is a far far cry from how and who I was and at times I struggle with that physically and emotionally because I remember how I used to be. My chronic conditions have caused me to become at 33 years old labled as disabled and no longer in control of my own body let alone my own life. 

I didn’t choose this, nobody with chronic condition/s chose to have them attack their bodies so viciously and we certainly don’t need to be judged by someone who has no knowledge let alone any empathy towards our conditions. If you don’t understand and want to, then learn, but if you don’t want to learn or understand then kindly keep your opinions to yourself because quite frankly, your opinions and nose is not wanted in my life.

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