Getting it right

I had a disturbed night last night, it wasn’t anything horrid and when I woke at 4:30 am I knew that luckily as I had feared that it wasn’t pain that had woken me, just horrid discomfort in my stomach. I had to give in when I took my meds last night, after 6 days of just taking the Lactulose at its highest dose both morning and evening, nothing had shifted, so I took the other stuff the doctor prescribed, the stuff that makes me feel sick, disturbed my sleep and generally I don’t like, but works. I really was hoping that after shifting the backlog a couple of weeks ago that I might be OK just on the Lactulose and decided to give it ago, but not too surprisingly it failed. I just don’t understand why it is so difficult to find something that will work but won’t cause me so many other issues around it. Sleeping properly is really important as without my full ten and half hours sleep every night and I mean deep sleep, well I can’t cope during the day. Right now, I feel rotten and I haven’t the slightest doubt as to why.

Everything is such a delicate balance, one that has now been out of kilter for several months. The last time I felt right and well enough to say life is easy, was back at Christmas time, I know exactly when it started going wrong, what caused it, well that I don’t know, other than to say that 28th of December was the last time I went to the loo without huge issues around it. Read back and you will see quite clearly that that was the start of this spiral, my PRMS around that date decided to close down my bowels and to aggravate everything else just because it could. I have always said that living with this monster is like spending your life on a tightrope, one tiny breath of wind in any direction and it will shove you right off that rope, then stand there laughing as you try to get up again. Right now, I am balanced on one knee, trying to get the foot of my other leg under me and I have been stuck there now for two whole months, it’s still a long way from getting myself back onto the rope. I discovered this morning that along with everything else, I have been forgetting to take on of my morning meds for how long now I am not sure. It isn’t one that really has anything to do with any condition I have, but because I am on such a large number of strong drugs, I have to take another drug to protect my stomach. The daft thing is that despite standing staring at my meds laid out on the kitchen counter and thinking every morning that it looked to few from my usual handful and even mentally checking they were all there, it wasn’t until I was fetching a new box of Gabapentin from my store, that I suddenly saw the missing tablets sitting there on the shelf. I have been in the cupboard at least twice every week, but it just didn’t click until today and I’ve worked out that I haven’t been taking them for about three weeks. This is far from the first time I have done this, but what makes this one stand out, is the fact that I did the same thing with a different one just last month and repeatedly with my laxatives routine which is how it became clear that my insides were totally blocked up and none of the nerves working on their own. Until recently, I have been quite sure that as long as I got the times right, I could trust myself to take the right tablets at each time slot, now I am honestly beginning to wonder if I can manage or if I need some help here too. I used to use one of those tablet boxes when I was still working in the office, I needed it then more for the fact that I had to take tablets whilst out of the house, but it wouldn’t work for me any longer as I now have four medications that are in liquid form and two that I take when needed rather than at a set time. It just seems like my medications are becoming more and more easy to muddle, at the same point as they are becoming more and more important to get right. On the subject of medications, I know that I shouldn’t be doing this, but I did a quick count of what I had in my store of Morphine tablet and as I thought, because I had a spare pack from ages ago, I have more of the 10 mg slow release tablets than I need to take me to my next prescription. Because I am short of the booster tablets, I have this morning taken an extra of the slow release tablets, to make sure that I can get through the day without having to take on of my precious 4 remaining boosters, I just hope it will make the difference.

It would be so good to have just a few days of life feeling my normal, it may not be anyone else’s normal, but it means a lot to me just being able to get enough sleep and to not spend half my life feeling sick or in so much discomfort that I just want to give up. I guess that is why I tried just taking the Lactulose, everything else they have given me means I loose sleep and that alone as I said is what along with having my pain under control makes life bearable. I may have had a few days of glorious sleep, but the result is once again I am caught in this stupid circle, last nights laxatives may have eased the situation a little, but I am in so much discomfort again that I can’t find anything like a comfortable position, so much so that I already know I will have to take another dose tonight. Taking it during the day is actually worse, I did try it, but it had me wondering back and forward to the loo in anticipation of what never happened and feeling worse with every visit and then not getting any sleep as I was back and forward to the loo every couple of hours. It doesn’t seem possible that something as simple as going to the loo can cause me to land up in such a mess, but it has and I have had enough of it and it has to be sorted out.

There has to be a balanced line that I can find in this muddle, but it just isn’t appearing with any ease. As much as I don’t want to, I am honestly feeling that I am being forced into calling the MS nurses and seeing if one of them can come round to see me, it might even help if I can get them here this week as Adam is off on holiday and it might help if we are there together. That way he can tell them along with me just how difficult things have become and they might also be able to help him find a support group that might give him the support he needs and we discussed the other week.

Read my blog from 2 years ago today – 8/03/13 – Hello out there >

Jake was round here again yesterday as over the weekend I had won another symbol that he wanted off Ebay and it had arrived. Last week it was a 16 inch china and yesterday a 20 inch one, I am so glad I am not his neighbour even though he is a first class drummer, who swore 10 yrs ago that he would never pick up a drumstick again. I think his new kit is……

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