It’s not the bed

I am amazed at the difference just getting rid of that horrid little tablet has made. My head is now clear and I find that I am feeling so much better, that at this moment, even the pain doesn’t feel that bad, mind you, that could be the increased Gabapentin, after all, it’s not one of those drugs that relies on a build up effect. Today, I feel like a person again, rather than a zombie racked with pain. Duloxetine is supposed to be an antidepressant, for me, just those four days on it, did without a doubt, pull me down. So now I am me, I can get on with life and see about sorting out the rest of me.

It doesn’t matter how long you live with chronic illness, some of the effects of your condition can actually take over everything else. It is now over three years since I went through loads of test to prove what I already knew. That is one of the problems with modern medicine, they have to prove things, tick all of their boxes before, they believe you. My digestive system hasn’t been working correctly, for all that time, and longer. It started with pain across the top of my stomach and a pressure that was making it slowly harder and harder to breath. It was that pressure, that triggered the spasms in my diaphragm and then the intercostal spasms. Once they were triggered, well breathing just got more and more difficult and led to more tests and diagnosis of COPD. My intestine is basically, only, partially working. The nerves that are supposed to push the contents through me, are dead in some areas and relying on bulk to push from behind, to make it pass into the next section. I tried drug after drug, but the results were only ever tempory, and always relied on huge quantities and inevitable, caused more and more pain.

Before anyone says this can be helped by diet, well, I am virtually a vegetarian and my diet, couldn’t be more healthy if I tried, and yes, I do drink plenty of fluids. My GP was at a loss as to what else could be done and I landed up, once more back at the hospital. For once, the consultant I saw didn’t send me for tests, but sat and went through it in detail. His answer was Pysillium and to throw out every drug that my Doctor had prescribed for constipation. In his opinion, they were as useless as sugar water, totally pointless and were probably making things worse, not better. It took me several attempts and a lot of work to find a way, of actually taking the stuff, as it is totally inedible when turned into a drink, the suggested and normal method of taking it. Clearly to me, those who manage this method, don’t own either tastebuds or the ability to feel any form of texture in their mouths. It is the most foul and unpalatable substance anyone has suggested, I, should eat or drink. I discovered I could make a form of pancake which although still odd, they were, at least palatable, and eating one a day was amazing, in just a week, I started going to the loo. It wasn’t a total miracle drug, but I went to loo at least every three or four days, and I went without pain or effort. Like everything else, I have found that I have had to slowly increase the quantity of Pysillium that I consumed daily, but that wasn’t a problem, but, it meant I had to cut other foods out, as the pancakes are incredibly filling, but they worked. Yes, I did use the word worked, not working, as I have had some problems.

At first, I blamed the bed, as I kept waking with a painful back, which with my array of painkillers, was easy to handle. We got a new mattress and the back pain went away, but only for a couple of months. Then, just occasionally, I was still waking with pain in my lower back, worst on the left side, but it wasn’t as bad as in the past and I convinced myself, that it was just one of those things. Last month, I had two nights that were a million miles above anything I had gone through before and I instead of struggling a little to get up, I was struggling big time, even when using the mattress elevator. The pain didn’t just disappear once I had been up for a few minutes, it hung around for about an hour, then slowly faded. I looked and looked for a reason and simply concluded, that it had something to do with how I was lying and nothing more than that.

Two weeks ago, it suddenly started to appear within minutes of lying down and it wasn’t confined to my back any longer, it was running into my legs, my groin, and lower stomach. That was when I started to think again, this had nothing to do with the bed, it had to have everything, to do with my guts, once again. Getting up in the morning, was total agony, a pain that I had woken to, repeatedly overnight, it was off the scale of what I had known in the past. I could hardly manage the few steps from my bed to my wheelchair. As luck would have it, that morning, I went to the loo very soon after waking and I passed what I would call an acceptable quantity, more importantly, the pain vanished. That was the first clue, but far from the last.

I no longer have to be lying down, it appears in response to almost anything, including wind and simply eating, the pain could be triggered. This week, I have been to the loo three times, yet this morning the pain was once again off the scale. Walking was almost impossible as the pain wasn’t only in my groin, but my sciatica nerve, something I haven’t felt since I was pregnant with Jeffry, and unusually, the front of my thighs. I woke not just because of the pain, but my breathing was also difficult, to the point that it was my breathing, that forced me out of the bed. I haven’t been to the loo, nor has the pain totally left, there’s a shadow pain where the worst points where. I haven’t just accepted my own conclusions, I checked online and was surprised by the amount of information there is out there that confirms just what constipation can do your back.

So what do you do when you have done everything, that your doctors have said, and suddenly find yourself, in a far worse condition than any you have found yourself in before? I have been to the loo each day for the past three days, yet here I am as always, bloated and in pain. The pressure being caused on my body, is unbelievable, back, chest and everything inside me are being squashed. I’m not constipated in what I would call the normal way, as my bowels are moving, slowly but moving. I am rapidly coming to the conclusion that I have an area that is now working less effectively than it has in the past. Before I started going to the loo this week, I hadn’t been for over a week. I had put that down to the extra food that I ate over the New Year and that it would move when it was ready. Those four motions I have had, well they would match to the four days I ate my pancakes, well I couldn’t eat them, as well as those festive meals I allowed myself. I have no choice, tonight, I have to add in a laxative, something I don’t like doing now that I have been clear of them for so long. They are unpredictable, but what choice do I have. I no this is another one of my guesses, but, I think like all of me progression has played its part. Now my entire gut, both upper and lower sections, are backing up, and causing me pain. Once again, I am going to have to up my Psyllium dose, but from here on in, I can’t ignore any pain in my back, even the slightest. The last thing I want, is for my bowel to become impacted, something I think is a growing possibility. For the last year, I have wrongly thought this was a problem that was totally under control. Psyllium was my wonder drug, even though it isn’t really a drug, more a supplement. I had simply forgotten one thing, nothing in my life ever stands still, it just gets worse and I can’t afford to ignore anything, not even a little pain in my back.



Please read my blog from 2 years ago today – 14/01/2014 – What next?

Please tell me what is so hard about just going to bed when you are tired? It seems to be something I am doing less and less when I need to and more and more because the clock allows me to. I have been pushing…..











Steps to the Future

I can’t believe how much the pain in my back is getting to me. I live daily with pain everywhere and on new pain from an accident is driving me mad. I have even added ibuprofen on top of everything else and the pain is still getting to me? The whole pain relief thing isn’t making much sense to me lately as I have mentioned a few times, from what everyone tells me I really shouldn’t feel pain at all with the level of drugs I am on, yet I do? I hate puzzles that I can’t find the answer to myself. I am so used to in life being able to analyse a situation and find the root, then the solution, I feel kind of lost and stupid when it comes to this problem. The pain has spread today and I suspect that I have now hurt other areas in my attempts to relief the root pain caused the other day, the pain has spread right up to my waist, so walking is now a painful proses from my ankles up, there is a great temptation to go to my bed and stay there until it goes away. Defeatist of me I know, but nothing else has made any difference.

I am not really feeling well at all today and it isn’t just my back I am once again feeling sick and really out of sorts. I have been having chills and intense nausea at times, which I suspect is my gallstones so add in the extra pain and I have found myself in the normal human situation of feeling sorry for myself. Pathetic I know but hey, it proves I am as human as you or anyone else.

Yesterday and today I have been thinking more about starting to write outside my blog and pulling together my work of the past 10 months into one manuscript. I actually feel ready to write more but to do so I will have to change my daily routine to make space for it. That is really what I have been thinking about to tell the truth, more than just the writing, in my mind I have made that step, it is now planning that goal so that I can action my plan. This is what I have been waiting for, I am a strange person, I can’t do things until I am totally comfortable with them, it is one thing taking and idea and saying that is a good idea, to then being able to say I am ready to do that. One thing that won’t and can’t change is this, my daily blog, this my root and I need the day to day writing as to be honest it keeps me sane. If I tried to get through a day now without an outpouring of what my body is doing to me, I don’t think I could do it. By writing I am making my record and I am staying true to me determination to document the truth for all to read, including me, this is becoming my memory, well the god given one doesn’t work so I need another. I believe what is gong to be cut back has to be what I do on Twitter, I don’t want to give it up just trim it back a bit, I am also going to trim ‘Touching Space’ the three post a day is going to come down to just one, between those two changes I hope that I will make some free time, enough to start writing my book. This afternoon the final planning and as always a sleep so that on Sunday I have a new working order.