Caught in a quandary

I decided that I had nothing to lose, I had what I needed here in the house and today, was as good a day, as any. Adam, of course, wasn’t so sure, he questioned, and double checked my knowledge of my drugs, then agreed it was a good idea. I thought that as I had enough drugs in the house, that it might be an idea, to run a test and for just 24 hours, to increase my slow release morphine. Last night and this morning, I have taken one extra 10 mg tablet. As I explained to Adam, I take 10 mg fast release boosters all the time, so a slow release tablet was going to affect me even less and, was perfectly safe. It’s kind of hard to know what, if anything that it might have done, as I had a bad nights sleep last night. Without a doubt, my pain levels are slightly lower, but I wouldn’t stand up and declare it’s a miracle, the pain is still too clearly there for my liking. The prolific numbness and pins and needles appear slightly less, so yes there is an improvement, what doesn’t fit was last night’s sleep.

Morphine is renowned for causing nightmares and vivid dreams. Between 9 pm and midnight last night, I had an odd vivid dream, I know that could be caused by anything, but when I was popping booster after booster a while ago, I had vivid dreams. When I forced myself, to cut them down, regardless of the pain levels, the dreams went away. Once more, I find myself unsure and without clear direction. I don’t have a big enough supply of spare tablets to keep testing for a few days, so I am left with that life long quandary, what to do for the best. Why does life have to be like this? Why can’t just for once, the choice be simple, straight forward and without problems? I have been living for months now, with my pain and sensations way above what any sane person would find acceptable, but I can’t find the answer to them. I am already on the two most common drugs prescribed for dealing with wild sensations, such as the ones I have. Gabapentin and Amitriptyline. Apparently, Amitriptyline is not effective above the dose I am already on, but it might be worth asking for the Gabapentin to be increased, as I’m not quite on the highest dosage.

It was in fact, one of the things that I discussed when I was at the pain clinic, but, wasn’t pursued at the time. I was in one of my stroppy confused states, and Adam wasn’t with me to assist. The Doctor managed to wind me up within minutes of my arrival, and as I got stressed, I became more and more confused, argumentative and desperate to escape. It started over my not having the memory to be able to tell him, when I last saw my Neurologist, then went rapidly downhill from there. Clearly, he had no understanding as to what MS does to the brain or the effect it has, on our ability to deal with situations we’re not comfortable in. Within two years of my diagnosis, they gathered the information to confirm that I have extensive brain damage. There was even then, clear signs that I had frontal lobe damage and it was causing emotional instability, especially when combined with anything to do with my memory, it is a bit like living with attention deficit disorder. Hence my inability to now deal with change or people I don’t know, the reason that Adam is now always my link to the outside world. In some ways, I wish that meeting had been filmed. It was a perfect example of my brain, spinning out of control and leaving me, far, far behind it. All that aside, an increase in my Gabapentin, might just be the answer I’m looking for and clearly worth discussing with my GP.

On New Years day, just as I did on Christmas Day, I spent the whole day drinking bucks fizz. It took me from when I got up, right through to the evening to drink an entire bottle of Cava, as Adam doesn’t touch alcohol at all these days. I know, before anyone says anything, that alcohol isn’t the answer to pain or anything else. Yet the combination of a booster pill, both morning and afternoon, with the steady, slowly drunk diluted wine, worked wonders for me. It was a bit like stepping back in time, as the closest I can put it, is to say that I felt as I did about six years ago. On New Years Day, after days of planning, I even managed to do some cooking. So OK, it doesn’t take a genius to cook scrambled egg, and I did drop one whole unopened egg on the floor, but I did it. I also cooked the steak, new potatoes, mushrooms, cauliflower, broccoli and white sauce, later in the day. All of which remained where it was meant to be. I haven’t even attempted to do such a thing for a really long time, and to make it, even more, surprising, I did it all from my wheelchair. Yes, I was left tired, but I enjoyed it. My self-medication got me through two days of activity, that would normally leave me in incredible pain, exhausted and unable to function, I was only half way there. I don’t know if there is some kind of answer hidden in all that, something that might help me in the future, but it did make a difference, one that anyone would have been able to see. There is no way that I could do it again today, as today, I am still paying for it.

Last night, I was back to my normal self, I went to the kitchen, to do nothing more than open a few salad pots. Once I had juggled them out of the fridge and picked them back up off the floor, I then  placed them on my lap, so I could wheel them to the counter. As my lap had a clear slope and was covered in velvet, why I thought they would stay there, I have no idea. Of course, they didn’t, I had to pick them up for a second time. Once safely positioned where no more accidents could take place, on a nice level surface, I started to open them all. First two, went fine, the third, landed up on the floor, this time without its container, it was still in my hand, the tomatoes, mozzarella and olive oil were all over the place, including over me. Nothing annoys me quite so much as wasted food, especially, when I had splashed out on what was supposed to be the last treat of the holiday season. I had to call Adam to rescue me this time, there was no way I could clean it all up, as I couldn’t even move my chair, without squashing mozzarella balls into the floor. My growing exhaustion was beginning to show, no matter how determined I was to keep going, my body was screaming stop, I had to leave Adam to complete what was supposed to be dinner before I ruined it all.

That is life with chronic illness, one day, you can appear almost normal, the next, you’re can appear totally useless. I know appearances have almost nothing to do with anything, but when you can pull something off, in front of those who matter to you, well you feel good.The things that suddenly become enjoyable and noteworthy when you are ill, are often the simplest of things. I know that most 11-year-olds could have done what I did on New Years Day, yet I am still left feeling proud, for doing what once I could have done without thought. Life takes on a whole new perspective, we become proud of doing almost nothing. Excited, about what most see as a chore and elated, despite getting those tiny things wrong, well it was only an egg. But then yesterday, a simple carton totally defeated me, not once, but over and over again. This world we live in is truly measured by things that make little, or no sense at all.


Please read my blog from 2 years ago today – 04/01/2014 – Getting to me and you

It appears I am having one of my do anything else I can find to do rather than what I should be doing. I woke early this morning, just before 6 am in pain and bursting for the loo, the second was easily…..



6 thoughts on “Caught in a quandary

  1. I swear at times it is like you are living in my head and writing my own thoughts, from the weird dreams to the meds, although I am on slightly different ones and with different chronic pain I feel for you and really do empathise. D is my link in so many appointments and conversations with others that at times it is like having an interpreter! I wish I had an answer to your quandary but it is impossible with the fluctuations daily of how I feel and how productive I am sometimes regardless of my increased meds. Keep blogging though I love knowing I am not alone!

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  2. So frustrating. I understand the pill balancing. I take gabapentin but I fight taking it. I should tonight because it helps the burning pain in my legs. But at ruins your teeth when you take it long term and I had to have 5 teeth pulled before my transplant and all the meds are discoloring them. Poop. I am goining back and forth about about asking my Dr to raise my methadone. It’s not enough but I’ve wanted to not take more. But I end up going too long all night till morning. About 16 hours and I’m in such pain every day when I wake. I like methadone because it doesn’t make you high and you don’t build a tolerance and have to raise it. I’ve been on the same dose for years. But I’m kidding myself that all I need to do is wean off. But it wears off after 8 hours.

    I’ve been telling myself that pain is good. It tells me I’m alive. I say “suck it up. You have things to do”. But some days I’m a wuss. and I say”enough! a one day break! I can live a long time like this.. It isn’t degerative like ms. You would feel lucky to have one of my days and I wish I could trade and give you a break. I think you are such a strong person and I admire your tenacity. Yesterday I heard that Natalie Cole died. Had Hep C, too, from IV drugs, for 25 years. Only 4years older than me and she’s gone. But I’ve lived with Hep C for 42 years from IV drugs in the mid 70’s. Stupid teenager. People don’t realize it destroys more than the liver. She probably had money but it was worthless. But it made me sit back and realize the good fortune I have. Every day is a gift.


    • I guess we all find eventually the drug that works for us. I’ve been on Gabapentin now for I think 12 years, without the slightest issue. As you say, it works well with sensations, which is why, I’m thinking it needs to go up. If the sensations are lower, then, I believe I manage the pain the Morphine plus boosters. Like you, I wait as long as I can before I use the boosters. I guess that none of us, like giving in.

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      • I think that hits the nail on the head – giving in. I’ve wanted to show – especially to my drs – that i didn’t need the meds. that if I could just wean off them I would be okay. I also try to tell myself that I am just not an addict and I am the one in control. Mentally I know that this whole problem came from the fact of doing drugs in the first place so maybe I feel guilty. Then Natalie Cole died. I had hepc C 17 years longer than her – had the same Chemo she did, but she didn’t live. So many don’t live. When I quit all drugs – long after I got off the needle I still did drugs, but I did get clean – finally in 1988. I felt good and within a year I started getting sick. The symptoms of the Hep C that I didn’t know I had, until 1998. It was like my body telling me if I wasn’t going to take drugs by my own volition my body was going to MAKE me have to take them. So now I wasn’t an addict by choice I was an addict out of necessity. I don’t like to take pain killers. Even though methadone doesn’t get me “high” it is the addict thought I think about. This is karma. It is part of what my life gave me to deal with. We can deal with it with a positive attitude or as a negative. Because we are human there are some days I deal with it better than others. You know what I mean. I want to be “normal” whatever that is, but I don’t ever think I was normal. I think of what these things have given me that I wouldn’t have. I wouldn’t be able to write the music I do. Music comes from an emotional place. So many people are plastic – at least in my family – and are no deeper than their skin. They don’t understand. My niece once said, before my surgery, “She’s just a dying drug addict who wants sympathy” It causes me pain so I write music about it. I have found more people online who understand. People I can talk to who don’t feel they have to find fault with me to make themselves look better. My sisters have never once heard the piano music I write. I sent a link so one sister recently so she could listen and the response was – stop pressuring me. I don’t have time. It wrecked me – but I sat at my piano for 4 hours and recorded my emotions on my piano. I play it back and say that if they would only listen to it they would understand me. Why is it so important they understand? Because I’m tired of the nasty rumors they all gossip about. Family is supposed to love you – I thought. And here I am rambling to you again. But it is all wrapped up in everything else. Some days it is hard to be strong. I thought they would support me but during my transplant my entire family went to the beach instead. One day I’ll get this figured out. Thanks for listening.


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