Thoughts of the future

It’s days like this that I wonder how on earth I am going to be able to go through this shitful illness until old age. Do others feel like that? The pain is so bad that you are willing yourself to pass out and wonder how your body can feel so much pain and be conscious.

We have had weeks of record breaking heat.  The first day over 43 degrees about 3 weeks ago had set the tone.  Before that I didn’t know that I was affected by heat.  I also didn’t realize that the “burning” feeling in my arm could ramp up to feeling that I am sticking my whole arm in a bonfire and leaving it in there.  I wake every morning with the burn and so much heat in my face as well.  I can eventually bring the pain down with a spray bottle of water and a truck load of opiods and 2 hours later I can function a little better.  I became tolerant very quickly to the painkillers and after a while I hit the stage that they no longer work and I can no longer get any relief with them and will not increase my dose any further. I am strict with myself going through a different hell of weaning right down which is a pure hell on its own with fevers and worse body aches than normal.

So even though the burning is terrible I thought today I needed to start weaning.  I tried to have a very quiet day so that I can just take it easy to help get through this horrible phase.

By 2pm I was in hell.  I can’t even begin to explain this amount of hell.  My arm even had its own heat radiating through the awful weeping rash on the whole of my firearm in which I can’t use my tens machine.  The feeling of many tiny broken bones in your hand like someone has smashed your hand with a hammer.  Deep deep unrelenting bone pain.  A hot poker being jammed into a tiny space in your wrist.  Skin being pulled tight over the top of your hand and then someone had a potato peeler and they are peeling the skin off every part of my arm.  I am dazed, confused, scared and upset.  I just want to get away from it and wonder how I can be conscious.  How much the body can bare.

By 5.30 I have had pain killers.  They hardly touch the surface, I am in too much pain for them to work but I am less upset.  I can’t imagine living like this for so many more years. 

It upsets me that I am in my own. No doctor to help and if someone else was in this much pain at least a normal person would be taken to emergency and given something to help. I am treated like a drug addict with a mental problem. 

I am sorry for every horrible thing I ever did to anyone that this would be my punishment.  What I deserved. It’s just too much to bear.


3 Comments (+add yours?)

  1. Miss RSD
    Feb 09, 2014 @ 18:14:46

    You’ve done nothing to deserve this, though I really do know that feeling. Is there anyone who can support you in person? My leg flares from heat as well, I tend to keep a bucket of water near by and at least a tray of ice ready to make up an ice bath. I mean with the heat that pours off of my foot it warms up quickly but it can help cool it down for a while, and over-using this has really bad effects (personal experience) but it’s worth a shot if you haven’t tried yet? I hope things have improved for you since you posted this. Wishing you cool weather and the edge off that pain!


    • shazzagirl70
      Feb 10, 2014 @ 01:41:21

      Thank you for your comments and for dropping by. My head is in a much better place now even though ib have not picked up a great deal. The upside is I have carer now coming 5 days a week instead of 3. I think my lowest points are always spurred on with days of being unable to shower and be clean. With a public holiday at the most inopportune time for me 4 days without help and with this heat well you can imagine I’m sure 🙂 The overwhelming times as I am sure you understand where bring in so much pain and what had my life coming too I can’t even look after my basic needs. Having a shower more days than not had dine me the world of good and I have such an amazing carer too as she blows in like a breath of fresh air with her outgoing bubbly nature. Thanks again for stopping by. I hope today is a relatively good day for you 🙂


      • Miss RSD
        Feb 10, 2014 @ 20:18:03

        I am very glad your carer is that wonderful and your head improved! And you’re right, I do empathize with the feeling toward showers. There is nothing in the world quite like being clean, it changes so much in how I feel. ^^ Again best wishes :3

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