Avoidance issues

I just spoke to my Doctor and it was a phone call that has left me rather angry. It appears that he miss read the letter from the pain clinic and their suggestions of how to change my pain meds. Right now I am taking 900mg of Gabapentin three times a day. When I phoned the doctor last week, it was to see if I could get this raised, as I was sure that there was still room to increase it. I had this vague memory that when I was at the pain clinic, that they said this was one of the options that I had. I was rather confused when the doctor said that I was already on a dose that is above the recommended and that I clearly couldn’t have any more than that. It appears that the clinic recommended that it was raised to 1200mg three times a day, that was 18 months ago. So as of lunchtime today, I will be taking the new dose for a period of two weeks to see if it is enough to bring my pain under control. If it doesn’t, apparently, they also suggested that we try changing it to Pregabalin if that fails. I’m angry because the way he told me this today, it sounds as though I should have had the raised dose of Gabapentin ages ago, after all, I went to the pain clinic because my pain was rising. My GP, at the time, wanted to raise my Morphine, by I chose to stick to using the booster pills, as they gave me greater personal control. It has worked fine until the last six months, when I have struggled, not wanting to mention it, because of my fear of having to take even more Morphine. Normally, he is a great doctor and I have no problem with his care of me, but this, well this has angered me. I really wish that when a consultant writes to a GP, that they also sent a copy of the letter, to the patient, that way, I would have known all this and not relied on his memory. It’s totally unfair to ask a GP to remember every detail, of every patient that they have.

Over the last few years, all the old-fashioned paper notes have been transferred to computer systems. Understandably, but unfortunately, the GP system is totally separate from the hospitals one. For a very long time now we have had the right to see our notes on request, which means that you have to go to them, to be able to look through our notes. Being housebound, means that despite having the right, I can’t carry that right out. With it all being computerised, I personally believe that we should all be issued with log-ins, and be able to look at our notes whenever we choose. For someone, like me, who has a complex array of conditions, it would mean that I could keep track of all notes added, all suggestions, and what has already been tried. Consultant only writes to GP’s, either if they have prescribed a new drug, or when they have signed you back into the care of you own GP. Of course, GP’s only ever write to Consultants, when they have a patient they want them to see. The result is, that much is missed by both sides. I wouldn’t have missed these suggestions and I could have spent my time, assessing what might work best for me, plus I would be armed with all the details, that I have long since forgotten. I have forgotten so much, that different doctors ask me about, like the names of the drugs I have already tried, when and what one doctor said about something and so on. I have the time to arm myself with the info, that might make my future treatment, just that bit better. Although I have great faith in my doctors, both my GP and those I see at the hospital, the gap between the two is becoming, more and more visible as time goes on. It’s a gap that I feel I could fill, as could many with multiple conditions.

Clearly, from what I have just written there, I have removed the Duloxetine from medicine list and returned to my normal dose of Amitriptyline. Last night, for the first time since I took that first horrid little capsule, I slept right through the night until at 7:30, when I had to get up to go to the loo. I know I could have gone back to bed, but I decided to stay up, as not only had I slept through the night, but I also actually felt more awake than I had for days. The last four nights supplied only half the night in a deep sleep, and the other half, in a fitful half world, as unpleasant as the days that followed. Today, I feel like me, and that is a really good feeling. To me, I have just wasted 4 days of my life, because of my doctors mistake, as when I spoke to him last week, my request was for an increase in my Gabapentin, not a new drug, that would shred me into pieces. Mistakes happen, but that doesn’t make them any more pleasant.

Those who read my post from two days ago will know, that I had one of those horrid light bulb moments. The words “palliative care” appeared and I was hit between the eyes, by the fact I knew that the day I went onto Morphine, all though they didn’t say it, that I was at the end of the road. It’s amazing how when promoted to think of our care in one way, rather than another, that we happily carry on kidding ourselves. I remember at the time, briefly thinking this is the end, but my doctor waffled on about how there were still options and possibilities, although they didn’t name them. Clearly, their waffle was intended to pull me away from thinking I had reached the point when palliative care, something which is normally linked with the end of life care, was needed, and it worked, partially. Yesterday, that wall crumbled and I spotted the unspoken truth. Oddly, rather than pulling me down, it has left me in a very calm and subdued state, almost as though it removed not just a wall, but one that had spikes on its top. I feel as though the confusion of questions that didn’t quite make sense, are starting to solidify and showing the roots I need to go down, to put them to rest.

I have also been given a few pointers by several different very kind people, I know it’s not like I can make a list, this is an organic process, one that I will, of course, share here. I have also realised, that whether Adam wants to talk about it or not, he will have too at some point, just as I am going to have to get involved with groups like social workers, who I have body swerved at every turn. I’m getting ahead of myself, they aren’t top of my list, but they are on it, yes, I’m still avoiding them, but just like death, there are something’s in life, we can’t avoid forever.

 

Please read my blog from 2 years ago today – 13/01/2014 – Spasms are not what you think

I woke this morning on a bed that didn’t have the upper mattress hanging 3 inches over the edge of the lower and an elevator that lifted both sided of the mattresses at the same time. Adam and I pulled the webbing…..

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…..

 

 

Helper don’t help

Another drifty day, I guess all of last week has taken more out of me than I thought, I am still doing a good impression of a duck and talking, well it’s an effort. Adam had some more overtime last night and although I can rely on him to come home each evening and talk for about half an hour before the snores start. Last night he had put the remaining shopping away, then came through to the living room to take off his work shoes, and was still sat half way through the process when to my surprise I heard a snore, I think we had had about 10 words each and he was asleep. I have always thought of myself as being a person who goes to sleep easily but he just broke my record, I swear he took one shoe off, sat back and on the next breath, there was the snore. He dozed for about 20 minutes before joining in on life again. I admit that we don’t have huge amounts to talk about, well being sat here all day leaves a limited conversation range. As exhausting as interaction of any type is, I do really look forwards to our evenings together, even thought they can be as short as an hour or as much as 3 hours, they really are my high point of every day. I have been frequently asked if I would like more company at home, but it isn’t about company to me at all, I really wouldn’t want loads of visitors, but understandably time with my husband is incredibly important.

When the OT was here the other day I could tell by her expression that she didn’t like the responses I was giving to her questions, I wasn’t slotting into all her little boxes. Her suggestions that I should be in contact with all the different agencies she felt were important to my having a complete life, were greeted with my normal response of no thank you. From the diagnosis of my MS onwards, different people have put me in contact with different groups and charities, for me they just weren’t right. I know that many people need and embrace all they have to offer, but it just isn’t me and getting others to understand that is really hard. I have never really been what I would call a social person, the idea of attending groups and big social groups, to sit around and talk fills me with horror. I can’t explain it any better than to say it in that black and white fashion, and the worse my health is, the more against the idea of being taken out of my home to go to some group where I can’t do what I want. At home I have the freedom to lie down when my body tells me to, to eat or drink when and what I want. I have my home set up so I can manage, outside I need help all the time, and that is something I know would drive me mad, every single time I had to ask for it. I know that all these groups are set up to do good for those who need it, I may in their eyes need it, but they always seem to forget we are all different people and as such we want different things. Anyway the fact I don’t want their help should please them, it means they have more money to spend on those who want it.

I have to say there was one suggestion she came up with did really make me laugh, she suggested that I attended a falls clinic. At first I just couldn’t see what on earth a falls clinic was, I had this image of them teaching how to fall well, just as they would teach stunt actors. She reassured me that was totally wrong, they would assess me and see if they could supply equipment to ensure I don’t take so many tumbles. This seems to be one of the new changes to the NHS that I think is a great mistake, all these small clinics, separate from everything else. It used to be that you would see your doctor about medication to deal with pain, but no, you have to go to a pain clinic. A physio would supply you with walking frames or sticks, at the same time as sorting out cushions and beds or so on, but now they are in different groups, Rehab, falls, physio and OT, each dealing with one tiny bit. Each taking separate appointments, causing more stress, more hospital visits, upsetting my routine and making my health worse and all adding up to more cost. Sorry but where is the improvement to service there?

Last year I was forced to let them into my life again because I had a problem that I couldn’t fix, well here I am, a year on and nothing has been fixed or made better or even improved. To date all that has happened is that my health has got worse and I have no idea what I can possibly do to get the help I originally asked for. 12 months of putting me through tests, taking me here and there, Adam having to take time off work and what has changed? Not one single thing.

A plan from the day after

I suppose we all do it, go to the Doctor and hear what ever it is they want to tell us, then go home saying well that’s OK. We then proceed to build up a ring of OK around ourselves, luckily I spotted it yesterday afternoon while I was trying to sleep. That in itself told me it wasn’t OK, I COULDN’T SLEEP. I lay there and thought though everything that the Doctor said and what it implied, that was the bit I had missed, what it implied. I am going to spend the rest of my life with at the very least this level of pain, if not more. The drug that is holding the pain where it is, is my MST, for those that don’t know it is an opiate and like all opiates your body builds up a resistance to it over time and all they can do is lift the levels you take daily, but there is a limit to what they can give you without killing you. In other words they will only be able to control the pain as long as my body doesn’t build up a resistance to quickly. The very reason why when my medication was changed from oxycontin to MST I didn’t settle for the direct replacement levels. The matching dose was 70mg, but being a different compound it lifted the actual quantity of the opiate, so I worked and brought it down to just 60mg. It meant I had to put up with a bit more pain but my mind was clearer and I was also lengthening the time that I have with reasonable control.

Everything with MS seems to be a balancing act, trying to walk along that tight rope without falling off and accepting there are payoffs all the way. There are no cures, no magical drugs that will take away the pain totally and the best that a doctor can offer are options, you have to make that final decision yourself as to what you can live with. Just as yesterday yes I was offered other drugs but even the Dr himself said if he was me he wouldn’t change them, the fact my body reacts only positively to what I take and I know they are helping means they are probably the best option. I have to agree, if the other drugs had a guarantee with them that they would work better then I of course would take that few tough weeks while the change over took place.

So I know have it spelled out again and confirmed again, that the NHS can really do no more for me. I have heard that now for the last seven or eight years, there is nothing more we can do sorry. I have thought through the possibility of going to see my Nuro again, but I can really see no point, it will just be another day that screws me up for days after. Another horrid day of stair climbers and being trapped in a place I don’t want to be. Another day of going over word for word, what I have said to so many other Doctors. Another day of watching them nod their heads, make understanding sounds and then at the best have them try to palm me off on someone else, just as yesterday was. That was what happened on my last trip to see him, he sent me to two other department who dragged me through repeats of every other visit and at the end said, “I’m sorry we can do nothing to help you”.

So what am I going to do. I don’t have a plan if you like, it’s not clear in my head step by step, but what am thinking of is to step up my reading and my research. When or if I find something that I think may help, I will then talk to my GP first to get his input, hopefully he will be happy to go along with it, without a trip to the Nuro. I have read a lot clearly over the years and have tried several times to do that with my Nuro and on each occasion he just smirked said no and gave his reason. I think I might have more chance with my GP, but it is 100% clear to me now that the NHS won’t volunteer any help or hope so I have to.

I spent 20yrs fighting with them to get my diagnosis, just to land up fighting with them to have a better quality of life. It doesn’t sound much to want to live with less pain but still able to live a life, but it seems that is a future I am not being permitted to have, not by them being cruel, but because they have nothing more to offer me. I used to believe that all you had to do when you were ill was to go to the doctor and collect a prescription, oh how wrong I was.

What was the point?

Everything is behind time today, as I have at last been to see the Pain Clinic. I have always refused to go but then thing got bad and the MS Nurse convinced me that they would be able to help me. I really wish I had stuck to what I had been doing for years, refusing. Already I know you all have realised that they can do nothing to help me, yet another door has slammed shut on my first attempt to go through it. I sat with the doctor for about half an hour I started at my feet moving upwards, at each step he wrote it down and nodded. I went over the bowel problems and I listed it all step by step, the nods continues along with the odd question about the words I chose to describe things, eventually I had reached the last section and I waited as he for the first time looked at my list of meds that I am on.

We had a discussion about how well each worked, he was concerned by the level of the MST I am on as it is close to the max anyone would be happy for me to be on. Again we went over the problems that as time goes on I will need higher and higher doses, eventually this would be a major issue. I knew all that but there is no other option, it is what lies ahead and neither him nor I can change that. Then at last we got to the point the whole thing was about, what they could do to help me. All he could suggest was that we changed two of them for two other drugs. The drugs he said that were available might not work any better than those I am already on, there were no guarantees but for some they give a little higher pain control. The change over would take a few weeks and making the change would make me a lot worse for the first few weeks and at the end, well who knows, better, the same or worse. Next he told me about two other drugs that I have not tried that might have some positive effects, both are cannabis based and one rather hard to get approved, but he had little faith in either of them for those in my situation. He had prescribed them to a few of his patients but none had found them helpful in any way. I didn’t ask at the time but I should of, if they didn’t work, why tell me about them.

He had through out been trying to tell me that I would be better off seeing my Neuro, I told him that I hadn’t see them for years at which he was shocked. I went over how I used to see them every year, but when I became housebound I saw my Nuero who sent to see rehab and a physio. both were totally direct in that they couldn’t help me, there was nothing more available. I never heard from my Nuero again, that was 5 years ago and not a letter nothing. Not only did it feel as though I was abandon, I thought that it was because they could do no more. He checked my on line records and was surprised to see there had been no follow up, he was sure it was an accident. Accident or not, if they can do nothing and they want me there just to nod there heads and say we will see you in a year, what is the point.

I asked him directly if he was me, would he go through the medicine change over and try the other meds on top, he said no. As I feared here is yet another Doctor to add to we can’t do anything list and another letter onto my file saying just that and that he isn’t going to see me again, as there was nothing he could offer me. So I am now home again, exhausted and wishing that I had stuck to my first reaction to the Pain Clinic idea and not wasted my time morning having to go up and down in that horrid stair climber, being dragged around backwards in a wheelchair and draining my days energy for nothing. I wish I could give you all a more positive account of my experience, but I can’t. Adam has returned to work and once I have this posted here and on twitter I am going to my bed, I need to sleep this off and start on a brighter mood later.