Yesterday turned out to be a day filled with frustrations and more. It wasn’t really anything to do with my physical health, more as I have said in the last couple of days the total inability of my brain to hold onto what I was supposed to be doing. There wasn’t one single thing done yesterday when it should have been, including all my meals, going for my nap and even pouring out my nightly G&T. Despite the fact that getting that extra hours sleep is making an improvement in how I feel, it is screwing up everything else. Without a doubt, somehow having last weekend and yesterday, proved that sleeping longer at night does have a beneficial effect. I have been wondering for a long time if it would and if there was a way of achieving it without making a mess of everything else. Right now is that opportunity, right now we have three days in a row where getting up later, doesn’t mean Adam will be late for work. But it my brain just doesn’t seem to be able to cope with it.
I thought that with having a more flexible routine, that I would be able to deal with it. But because I am up an hour later, I forget to have my breakfast at the right time, I had it when I hit the point in my routine where it belonged, an hour later. From then on it was all set to go wrong, I wasn’t looking for lunch at lunch time, no, I was an hour late and so it went for the whole day. The only thing that happened smack bang on time was having my evening meds, as Adam was here to make sure it did. Each time I noted that I had missed something, of course, I wound myself up about it and the frustration with myself just kept growing. It is one of those things that you don’t have control over and with each new missed event, it just grew and grew. By the time I hit 7:30 and I found myself still drinking coke, well my frustration had hit explosion point and had changed into anger. Adam could see how disturbed I was over everything being so far out of my normality and offered to reset the alarm. I was tempted but said no. The days where I have been up later have been so clearly so much better that to miss that, seems about as stupid as not taking my pain killers.
This morning I was disturbed just before 7 am, which meant I didn’t go back into a proper sleep. Waking anytime after 6 am can do that to me. The best I can hope for is to dose from then on. The result today was that I woke again at 7:50 needing the loo and just got up, but I am without a doubt that if I hadn’t been distributed, I would have slept on. Getting-up then meant jumping back to my normal timings was really easy. Today though will have to go down as a missed opportunity. I haven’t given up, I know that it is the right choice for me, but if I can’t get this damned frustration under control, I will be undoing all of it’s benefits. Everything is designed to make my world calm and steady all of the time. Stress, even if it comes just from frustration, isn’t a good thing for anyone with my range of conditions. Both Adam and I have put so much work into achieving a world that supports me, keeps me cocooned and safe all the time. I know that this small change isn’t undoing that, but it is damaging it.
It is so hard to make changes, even when you know they are changes for the best. Yesterday was the perfect example, no matter how much better I felt at the start, it was undone as everything else took over. If it was every day of the week, it wouldn’t be a problem, I would fix it slowly and live would settle. I am asking my brain to work on two different routines and to accept both. It may be just one ask too much, but I have to at least give it a good try. It is always tempting to give in too soon, to find something that isn’t working and to ditch it. Just like the Psyllium, no, I haven’t ditched it, I am still eating my way through it every second day. I can’t say yet if this is a system that will work for me, it’s too soon. What I can say, is that by not taking it daily, I have broken that painful bloating that it was causing. That may be under control, but that doesn’t mean that the pain has gone, far from it. I still find myself in pain every night, just as badly as ever and my constipation hasn’t changed, but I now accepting the fact that it is now part of my life that I can’t change.
There is a time when every pain has to be accepted, a point when all and any hope that it can be removed or managed has to be forgotten. The first half of this year was spent wrapped up in it, monitoring it all the time and having my hopes tightly attached on getting rid of it. There is a point though that appears that says this is it, you can’t do anything that will change it, so work on accepting it, that is where I am now. Part of me still wants to demand that they medically do something about it, but they have said quite clearly that medically, there is nothing they can do. There is no point me sitting here day in and day out letting it pull me down. Getting angry at even extreme pain that takes my breath away or leaves me in tears, doesn’t make it better, it makes it worse. Just as I have done over and over with all the pain that I now live with, I have to put it where it belongs, as part of my life, not the focus of it. That I suppose is why I have made a point of not writing about it in the last couple of weeks. Writing about it every day was making it more and more my focus, rather than just there. Maybe tomorrow I will write more about that process, for today that is all.
It’s time to move on before I land up behind and wading my way through frustrating arguments with myself. They don’t achieve anything either.
While I don’t suffer MS I am familiar with so many of the symptoms you have mentioned here. I recently went to a nutritionist who helped me change my diet to anti-candida even though I had no typical symptoms you would associate with yeast overgrowth. However, foggy mind, digestive issues, pain, and constant hospital visits were my story. Now I am on a strict nutritional detox to starve any bad bacteria in my digestive tract. It has been tough but thanks to my OCD mind I have stuck to it perfectly for 3 months, all my symptoms have improved which is fantastic as I was losing my will to live. I have to cook a lot but have found many yummy ways to satisfy my appetite. I hope you find some relief soon. Blessings to you!