I had a late lunch yesterday, not the most nutritious but a lunch that was pure comfort food, even though it contained Psyllium. Pancakes with Mapel syrup and cream, it couldn’t have been more comfort if it tried. I actually wish that I hadn’t bought the Mapel syrup, the idea was that I could have it occasionally as another way of getting the pancakes into me. It has turned into the way that I have eaten them every time in the past week. I justified the first two as being needed, if I was going to get rid of this weak feeling, well I needed calories with a kick and the fastest way I could think of was Maple syrup. Despite having tried it four times now, I have noted no improvement, other than a slight lift in mood followed by guilt once I had eaten them. I guess that the guilt is another proof that it’s just comfort food, I have never heard anyone saying they felt guilty after eating a salad. Food is now even more spread out over my day, I did that when I changed my routine as I though if I spread it out a bit more my energy levels would become more spread with it. All those theories that we pick up through our lives about food and energy being linked, just don’t seem to match up for me. Mind you if it takes my body 14 days to process food through me, the point where my body takes the most from that food could be anywhere along that process. I still can’t eat regularly in the evening without feeling sick. In fact, it’s a rare evening that I don’t find myself taking one of my anti-nausea pills. I can only make a guess that with the slow processing that everything I have eaten during the day, is still in the way.
The end of that last paragraph has left me wondering something. When was the last day in my life where I haven’t spent some time trying to make sense of my body and what it does? I actually can’t remember. Having spent so many years with doctors trying to tell me that I wasn’t ill, has been the catalyst of my trying to work it all out for myself, for what feels like forever. I can go right back to that first visit I made to my doctor in Rosyth when Teressa was just a baby. I remember it clearly as it was the first time in my life that I felt as though my doctor was being patronising. He didn’t actually pat me on the head, but that was how it felt. He dismissed all my aches and pain, my tiredness and even the spasms I was getting in my left leg as “perfectly normal for a new mother”. I remember going home and pulling out a family health book that we had received along with our encyclopedias and started to search through it for my own answers. Oddly I don’t remember ever being able to pin down any of it. Yes, I did read about Multiple Sclerosis, Parkinson, premature dementia and every other condition that shared symptoms, but I never once headed into the doctor saying, “I think I have this”. Even in my early 20’s I wasn’t stupid enough to make that mistake, but neither do I remember ever actually making a self-diagnosis.
I used to think that once I had my diagnosis that life would get easier, I guess we all do. It is a rather nasty wake up that appears around year three post-diagnosis, that you are still totally alone. Everything that feels or happens can’t be stored up for your annual visit to the neuro. The day to day care is down to yourself and no one is going to suddenly appear with the answer to anything. The life of “what’s that?”, “Why did that happen?”, or “That’s something new, what do I do about it?” continues. Yes, the help is there when it comes to physical aids, need a wheelchair, you get one, need an answer, there isn’t one. Actually, I think the self-questioning and answer searching get’s worse not better, especially as your illness progresses. I know I can’t be the only one who spends their life coming up with theories and tries to fix all these things by themselves. I am quite sure that there are millions and millions of people out there every day asking exactly the same questions and searching for the same answers as I am. One or two of them might actually even find the answer, but the rest of us are left in the dark. Maybe one day there will be a doctor who is honest enough to say “This is what is wrong with you, we’ll give you medication to help, but the rest, well that is up to you.”
Adam just phoned me from work and I have to say that I am rather angry at the moment following what he told me. Yesterday, my medications arrived but when we unpacked them we discovered three problems. First, there were two medications that I canceled after seeing the consultant last month, second the calcium tablets weren’t there at all and thirdly, the Amitryptiline was once again the horrid soapy tasting one. Adam had called them to get these three things corrected, but they said that the two meds I had canceled hadn’t been canceled, the Calcium tablets hadn’t been added but yes they had the note, added on the same phone call as the calcium, about the Amitriptyline, but it had been missed. As it had been dispensed they couldn’t take it back as it would have to be thrown out. They are going to phone here apparently with regards to the calcium tablets and if in future they can get the other amitriptyline and I will be ready for them to do so. I don’t see why I should have to spend another two months taking a medicine that they made a mistake on. Personally, I don’t see any of this as my problem, it is totally theirs. Adam thinks that we should just stop using them and go back to the system we had before. I think they should just get it fixed and admit that they made a mess of it. I don’t want to go back to having my prescriptions being sent here by post, then Adam getting them once he was finished work. Although I see his point and yes I am angry about the whole thing, I have a very good reason to want things to stay as they are. Last month when I needed ad-hoc prescriptions and needed them quickly it was a perfect system and I had my meds in hours, instead of days.
I find situations like this so difficult, I am really angry and I can’t do anything about it. Which is why I have asked Adam to deal with all these things, but he isn’t a forceful person at all. It would never have even entered his head to tell them it’s their problem, not ours. My problem is that these days, I would have been too forceful, my reactions are instant and not thought out. Having the time since he phoned to now, I have worked out that we need these people and being overly forceful would make the situation worse not better and we do really need them. The problem with Adam making all these calls and sorting things out for me, is I now land up getting angry with him instead, as I just did. He accepted their “Sorry we can’t change those drugs now”, where I never would have and I want him to think that way too, but maintain his more gentle tone that I can’t any longer. Since my PRMS started to eat away my brain and in the last few years my control over my instant reactions, life has got harder. I can’t deal with people any longer and I know that, just Adam telling me what they said was enough to start tears running, which isn’t good on the phone when combined with disappropriate levels of anger. I need him as my buffer to the world, but I get so frustrated by it all. It’s another of those damned questions, how do I deal with a world that simply doesn’t understand that I mean no harm in the way that I talk when things don’t run smoothly. I think I need some comfort food right now, but not pancakes today.
Read my blog from 2 years ago today – 8/07/13 – Changing those levels
I had a great opening line, one that just sang out how I felt this morning, but now, it’s gone. Not only do I not remember it, I can’t even remember why I would need to describe today as anything other than Monday. I do know that this morning started well apart from having to get up half an hour early to go to the loo, you would expect that if you were desperate……
To the “world we are just a prescription number. THEY NEITHER KNOW OR CARE, HOW IT AFFECTS THOSE OF US THAT NEED MEDS TO LIVE. TO THEM …IT’S A JOB AND YOU ARE A NUMBER, WITHOUT A FACE.I LOST MY TEMPER SO MANY TIMES,THAT THEY NO LONGER TALK TO ME.THEY TALK TO MY APPOINTED CAREGIVER. I AM NOT EVEN A NUMBER. I DON’T EXIST.I DON’T WANT YOU TO FEEL BAD, BUT I UNDERSTAND YOUR ANGER AND FRUSTRATION.LIKE YOU I AM STUCK LIVING BY THE RULES OF THE “WORLD”. IT SUCKS, I HATE IT…YOU HATE IT MORE.SORRY, THIS IS A USELESS COMMENT.