Author: 6mandi

Never thought I’d be saying this but……

I would quite like to snuggle up with those old characters from the snakey days.   Compared with the new monsters, they seem a bunch of pussies.

I am aware that in these days of lockdown and not seeing anyone and nobody travelling anywhere that none of us are really getting a grip on how anyone is fairing physically – or mentally come to that. So I thought I’d give an honest update.

My physical state has deteriorated dramatically.  I could have said this months ago, but what has driven me to the realisation there is no going back is because I could now very easily give up.  For the past few weeks, when I have woken in the morning it would be so much easier to just say, “I’m staying here.  I hurt, and I’m only going to hurt more”.  I’m not entirely sure what I can contribute and it’s a hell of a lot easier for everyone if I were to stay in one place and not even try and attempt something approaching what used to be a normal life for me.  Or anyone come to that.  I can still walk/stagger.  With sticks, about 100 yards at the beginning of a good day.  Without, on a good day, 10 yards. On a bad day, I really can’t get about at all (note, I’ve reverted to imperial measurement;  we are out of Europe after all).  I can still get upstairs and continue to do so a couple of times a day to keep the muscle memory going.  Coming down is really tricky, particularly first thing in the day.  It takes about 10 minutes of carefully beginning to move my limbs when I first feel like stirring out of bed, and walking down the stairs is the biggest work out of the day.  By the time, I’ve got to the bottom I’ve bent my ankle and stretched the muscles in my legs enough to give me a morning’s worth of movement around the kitchen.  I might then venture to the laundry room (and I may even have corralled a basket load of laundry together to get there) and am more than happy, from that point on, to rely on Mabel to ferry me back and forth and up and down the garden path.

But it would be so much easier to just stay in bed.

Mentally, it is really hard work to remember things and to transfer words into actions.  Remembering plant names is easier than a shopping list, but remembering why I was trying to remember those names is another matter entirely.

I can get a pot of porridge onto cook and I can hold a spoon.  But when said spoon is loaded with porridge, manoeuvring it from bowl to mouth becomes something of a comedy.  Don’t ask me to dine with you – particularly spaghetti.  Holding a drinking vessel is a two handed job.  Doesn’t look too bad when cradling a mug of coffee but definitely odd when it comes to tipping back a glass of wine – or something else interesting and cold.  Cutting food with a knife is not a good idea.  Typing is not impossible, but I will pay for it later in the day.  

To summarise, yes, i can do a few things, but golly, do i pay for it later.

So, these new characters need an identity.  New Year’s resolutions are a thing of the past for me, in terms of fitness or physical goals.  But Greek mythology seemed like something I could try to get hold of and was something that had completely passed me by.  I am sure it was a part of the curriculum I shunned and I do seem to remember a Mrs Gudrun at Leelands keeping us spellbound with what seemed like totally fantastic tales.   So with the help of Natalie Haynes (BBC Radio 4) and Stephen Fry’s Mythos, I am being entertained and educated.  The Hecatonchires were the progeny of Ouranos and Gaia and the second set of triplets after the cyclops.  To quote Mr Fry “they were a mutational experiment never to be repeated….each had fifty heads and a hundred hands and were as hideous, fierce, violent and powerful as anything that had yet been released into being”.  They’re having a great time in Petham.

So this month was supposed to be my annual consultation with my Neurology Consultant.   I telephoned the MS nurses’ telephone number at the hospital and actually got a reply instead of the usual ansaphone message for me to leave a message.   The reason for my making contact with them was to ask if I should have a test done to check the creatinine levels which in the past has been a sign that my kidneys were objecting to the current pain killers.  The receptionist fielding the calls said that yes, I should do that but we then learned (it was all happening at about the same time) that the hospital was so overworked they were not processing such tests.  Hours later I learned that my appointment with Dr Hari (consultant) had been cancelled.

Well I wasn’t going to get much mileage from them anyway, so am I bothered? However tomorrow I will try them again as I do have various questions about things to come.

On a practical level, after four months of incredible efforts by our builders, we are back in our gorgeous, cosy, perfect home.  In fact, we were back in when I wrote my last post, but I didn’t mention it then. Everything about it is working perfectly from basic layout and design to light levels both natural and artificial.  There are still some things to finish outside such as the gates and of course there is the garden to plan and plant.  I think that may not happen quite so quickly and efficiently as the house, partly because you can’t hurry Mother Nature but also because Pip begins his course of chemo tomorrow and although he is in good health in other respects he doesn’t have quite the same strength and energy he had before his diagnosis.  

We learned about this before Christmas but the vital consultation with the oncologist didn’t happen until the beginning of January and until we really new what the game plan was, neither of us felt like broadcasting it.  And here seems like as good a place as any to do it.  

It’s been a horrid year for everyone and I am only posting this note as a goodbye from my perspective of a strange year.

Yes, there are some incredibly strong and happy moments that have relieved the other negative and sad ones.  And it is upon those good ones we have to dwell.

To summarise – the investigations and tests that were initiated by our enthusiastic and thorough GP produced nothing conclusive or interesting enough to be taken further.  The care and interest our local surgery have taken over my case has been exemplary.  Next week I have a telephone appointment with the consultant neurologist who is looking after me.  I will report back if there is anything positive he may have to say.  On the basis that it will just be yet another negative experience I don’t expect I will have anything interesting or enlightening to report upon.   The best sort of response I can expect is that I may be up for another MRI, but as I have already explained, to get the new “wonderdrug” for PPMS I need to have new lesions, and even if I DO have these new lesions, its a bit bloody late now.

I’m tired.  I’m tired of trying to fight my corner.  I’m tired of being grateful to people in a profession which I thought was supposed to help me.  We hear about all the wonderful things the medics are doing, and I’m sure they are.  But not in my field.

Therefore, it’s probably best I say no more

I began this note over a week ago.  My appointment with the consultant never happened, and already we’re racing along on the roller coaster and starting on the first slope.  Here we go…..

That is a good heading for spellchecker. It was quite interesting how many interpretations and spellings of that title were offered by Mr Apple.  But this is not another “Update” as to the investigations that have been carried out over the past few months. I have had another ultrasonic scan but yet to have the results. I think the emphasis on that scan was my kidneys. 

I have completed the “Pathway through Pain” course that the NHS have offered me. I think I said in a previous post that I was finding the course quite helpful in terms of the meditation and breathing to overcome the pain issues, And those benefits did outweigh the annoying and inappropriate guidance and suggestions.

Through visualising the spasms, aches and pains, I find I can breathe and eventually relax which does mean the pain  is reduced. I find it much easier to actually visualise things and this way I can navigate my way around the spasms. I hasten to add that when I am having a big relapse no meditation, breathing, hot bath or drug will make life better. 

Get this:  I think most people who read this blog are cooks of some sort or at least may have watched a piece of meat or muscle sitting in a frying pan. Of those pieces of protein, I think herring roes give the best example. Imagine the roes in a colander and you pour boiling water over them (I will not go into the detail as to why one does this when about to prepare a Soft Roe dish).  You will observe that the roes contract to the extent that they completely distort and writhe grotesquely. In MS the muscles harden;  think of the scalded roes.  My knowledge of anatomy lets me down here, but my ignorance or the exact physiognomy is irrelevant because what I am doing is conjuring up a visual image to help my meditation.  What I visualise is those muscles have nerves around them and the covering of those nerves has been stripped through the process of demyelination, which is what happens in MS. So what I try and do is imagine those distorted soft roes being soothed and bathed.  In turn, with the breathing, the warmth of the hot water and the assistance of CBD, those tortured muscles are soothed.

But this relaxation does have its drawbacks and I am tempted to think that the reason why my mobility has become so much worse is because the muscles aren’t strong enough to hold me up because I’m spending the whole time telling them to be weak and floppy. Does that make sense?

Regarding my mobility, I have been walking as much as I can which isn’t difficult at the moment walking from the nest in the garden to the house and back, several times a day, and I make sure I climb the stairs at least twice every 24 hours in order to keep the muscle memory going.  Balance is my main issue and I now walk with two sticks which is a huge help as I take a lot of my weight on my arms instead of my weak legs.  But as my right arm is deteriorating particularly quickly at the moment I find taking that weight has compromised the use of that limb.  I am going to experiment today and try not to use both sticks to see if that makes a difference to the attacks I tend to get about 8 o’clock at night. These latest episodes have been resolved with a hot bath and a bit of meditation and of course the CBD.

I am still here. I don’t have a lot to report but in a way I suppose I do. I have had the scans I mentioned in the previous update, and I have had another couple of consultations with my GP. To conclude, she cannot explain the coincidence of the antibiotic relieving the pain and as I said in my previous update the last time I took nitrofurantoin, it had no effect on the pain relief side. However she has put me forward for another ultrasound which I think this time is on my liver and is to be carried out next week.  Therefore, my next post will be after I have received the results of that, and will mark the closing of this particular goose chase. 

On a more positive side of things I have completed the pathway through pain course and I have found the meditation and breathing exercises to be extremely helpful with the pain relief. I have also recently reduced the dose another 100 mg so I am now 300 mg away from my target.

We have been living in the resting box for the past 10 weeks and in that time I have only had one really bad “relapse”.  When they happen I’m afraid meditation and deep breathing goes out of the window and the pain relief ie gabapentin doesn’t have an instant effect. I suppose I could up the dose but on the basis I am supposed to be reducing it, it seems like a game of snakes and ladders.The last really bad day I had of it was a Sunday, about six weeks ago and absolutely nothing other than distraction worked.  The CBD unquestionably is an immense relief, but if I’m in company I have learned it’s better to be distracted by them.      Temperature is still absolutely crucial to my well-being which is something I’ve known for a long time but it has never been so important. The house renovations are a wonderful diversion and it is really useful to be able to be preoccupied with light switches and drainpipes, tiles and carpets.  

I have had a couple of telephone calls from my neuro physiotherapist which were just that. She was just concerned to know what my drug habit was(!) Whether I had heard from the MS nurses and whether I wanted to see Dr Hari. I really can’t see any point in going to see him when there isn’t anything he can say to actively help me. The important thing as far as I can see is that I get another MRI done on my brain/neck to keep an eye on the lesions there In the hope I may have some new lesions and get either stem cell treatment or the ever elusive Ocrelizumab (Ocrevus).  Talking to Nicki Guck, the physiotherapist, I asked her what sort of success rate they were seeing with the application of the Ocrelizumab, and the stem cell treatment. Of both of them she emphasised that nobody was improving, and at best had steadied the physical decline of patients. With regard to HSCT, she sounded even more negative about its usefulness possibly because of the fatalities she knew about.  So do I really want to go and talk to another doctor, only to be presented with another shut door.?

Hello again. An awful lot things have happened since my last post but mainly of a practical nature rather than to do with my health. However, I have been to the hospital for more tests and an MRI, and later on this month I am having an investigative procedure to continue to try and find out why I keep having these infections.

But since my list of drugs as above on the previous post I can now add a further two doses of antibiotics one being, apparently, a new one called Monuril, hotly followed by my old friend, nitrofurantoin. Whether the infection has gone I do not know and will not until I return another sample but what I have found, sadly, is that this time the nitrofurantoin appears not to have any effect on the pain. This could possibly be because I am having something of a relapse at the moment, although I feel I should note that with primary progressive Multiple Sclerosis I feel it is incorrect to describe my symptoms or the progress of the disease as as having any sort of remission. It’s one big relapse in my view. But I’m not meant to be getting hung up on semantics here.

So that is all there is to say at the moment but I just felt it was worth noting that the nitrofurantoin isn’t working as a pain relief. I know it is an antibiotic and therefore not meant to be pain reliever but I wondered, as indeed I think my GP was wondering, whether perhaps we had made a new discovery between us all. For instance Viagra was discovered to be beneficial in a completely different way to that it was intended for!

As a result of my GP’s enquiries tomorrow I have a telephone consultation with a gall – bladder specialist (I am sure he has a proper name – gastroenterologist?) tomorrow afternoon and then on Tuesday I have a cystoscopy. I think every bit of me must have been investigated inside and out but whether joined up thinking is applied………?

In the meantime the muscles in my leg are hardening to the extent I have little control of my right leg and walking becomes ever more challenging. Thank goodness we can get almost to the front door of places we visit and we really think twice about loading Mabel into the car because she is quite bulky. A trip down to Malborough a few weeks ago was a massive success not only because of the company and deliciousness but Mabel came too and I was able to join in with a little walk up towards the gallops. On Friday of last week I had a telephone meeting with a representative from DWP who was basically going through forms I filled in as a request for PIP.
I don’t yet know whether I have been successful in my request to retain some form of independence but I will keep you all updated. Fingers crossed. Whilst we have a staircase (shortly to be altered) I am still trying to get up and down stairs at least twice a day to try and keep some form of muscle tone going, or muscle memory or whatever it is that makes your legs go up and down. It is the weirdest thing to look at your foot and flex an ankle……..and nothing happens. It is only with extreme concentration and screwing up the sides of my face I can get it to move an inch. Ho hum.

This is as much a note to me as it may be to you. There appears there may be a pattern emerging as to the onslaughts of pain with this bloody disease.

Christmas 2019. 3 day course. Nitrofurontein. No pain

11th May 2020. 3 day course. Nitrofurontein No pain

? ? Nitrofurontein

16th June 2020. Trimethoprim. No pain

1st July 2020. Ciprofloxacin. No effect on pain

(The “?” shows a time when I think I had another course of Nitrofurontein).

The first, second, fourth and fifth ‘scrips I am sure are correct. I’m going to check with my GP the third one…….indeed all of them when I speak with her on Monday.

Hhhmmmmm

I have not been very good at keeping up with my blog and I hope I am going to remember what has happened since my last post. But since the last post my GP has put me on yet another antibiotic to try and clear up this infection which she has at last managed to identify, or should I say Pathology have identified as streptococci. Having identified this bacteria she decided to put me on another antibiotic called Trimethoprim, The course of which I completed on Saturday I.e. two days ago. I don’t know whether the bacteria has been kicked into touch but what I can say, is I am in just as much pain as before.

But the investigations go on. Last Friday I had an MRI this time on my abdomen which included some completely different administrations, before, during and after the scan. I have lost count how many MRIs I have had over the past 4 years but this one was completely different which I suppose was because of where they were scanning. The brief conversation I had with the technician (I am not sure what the real job description is) at the end of the scan revealed that the results of the procedure would take two weeks and in that time I think I am having another sort of scan at the request of the Urology specialist with whom I had a telephone consultation about two weeks ago.

So to try and summarise of where I think I’ve got to: The GP is still waiting for all the jigsaw pieces to be collated so she can hopefully identify why I am getting these repeat infections and then perhaps prescribe the right antibiotic to shift them. The trimethoprim which was the last course I completed two days ago, appears to have been the least effective in terms of my pain attacks whereas the Nitrofurontoin seemed to coincide or perhaps was the reason for the pains at best going or at least making them manageable. When I say making the pain manageable this is partly thanks to a course I have been put on through the National Health called PathwayThroughPain which I am finding quite helpful.

Because my right foot and ankle were beginning to swell to the point I was finding it very difficult to put on a shoe, my GP prescribed blood thinners at the same time as the new antibiotic trimethoprim, and she fixed up for me to go to the hospital in Margate, to the DVT clinic. They swiftly assessed, after an ultrasound scan, that A DVT was not present so that is one thing that can be ruled out. But why is my right foot swelling up, is it because of the weather as it does coincide with the very hot spell we had at the end of the previous week? Is it because of the infection? Is it because my kidneys are not working, but if that was the case then why just my right foot?

I am going to finish now, knowing that I have probably missed out some things and possibly confused timings and drugs. I am going to try and fix another appointment with the GP to see if I can be put back onto the Nitrofurantoin, to see if that will quell the current pains. Could it be that there is a component of that drug that acts on the nervous system? I think that there are other questions to be raised from these trials which may be of some interest to the drug companies? The doctors? The MS nurses? The Neurologists?

Yet another unimaginative heading but I am trying to keep this particular section of my MS journey together because it does seem as if I have been having infections which could’ve been going on for many months. It does seem as if taking antibiotics have improved my life immeasurably.

I will return to the factual part of this blog in a moment but I have some good news to relate in that our house renovations are now proceeding at a pace. The Annexe in the garden, known as the Nest, is at last finished. There is a gap of about 7 m between the nest and the barn, and the foundations and wall are now in place for the greenhouse to be attached, which will hopefully arrive in early September. The barn, which has been absolutely stuffed full of the contents of Dadmans (apart from the few bits we really need to live) has been tided and rearranged again and again, and we actually have some space in it. That is thanks to Pips amazing hard work and organising.

That is just as well, as we have now chosen the builder we would like to carry out the work on the house and of course we now need to move everything out, either back into proper storage or stored in the barn. And there will be the incentive to get on with the job before the cold wet weather begins as the seasons change. Obviously all three of us will be living in the Nest, which in the summer is going to be like camping and it is just glorious to be sitting in bed in the morning, which is what I am doing right now dictating this post for my blog, with the double doors wide open and I just look at the grass and the trees and a black and white spaniel has just catapulted through the doors and thrown herself at the edge of the bed where she knows a hand will come down and hold her paw, or tickle her tummy if only she would keep still for a nanosecond. With a welcome and start to a day like that what could be better? It is impossible not to smile and have one’s hopes lifted after a greeting as ebullient as that.

We have a meeting with the builder tomorrow to discuss things like time schedules, insurance, building programs and the like. We have the building regs so we can now proceed with the next phase of our project here. I know this is not particularly relevant to my MS journey however in terms of keeping my interest and the small part of my brain that hasn’t turned to mush turning over in some sort of fashion; this is the sort of project I need to make me think and feel that there is a purpose to life. You all know me, I am a doer, not a procrastinator and in the absence of looking forward to being well and enjoying a full recovery, (I would settle for a part recovery even), I can derive some form of satisfaction in seeing our ideas take shape. Mabel is brilliant in enabling me to get round the garden. Yesterday I managed quite a few tasks in the morning. As I am now living in the nest (therefore all on one level) I try and go up and down the stairs a couple of times each day just to keep the muscles in my legs used to that action and it is incredible how much better the second attempt is than the first as the stiffness in my legs is eased by action. But there then comes a point when I go over the top and then I just get weaker and weaker so those muscles which I have got working suddenly get to the point where they can’t even support me. That is where planning my day is so important in terms of evaluating when and how I’m going to use my valuable muscle time. I can’t believe I’m saying this, but the feeling of achievement having been upstairs got the washing, got back down again and pushed it in the machine and to then hang it up was my one big achievement yesterday. And tying up the tomatoes!

So, back to the medical, factual part of this blog, I had a telephone call from my GP last week and after another 20-30 minute conversation she prescribed a different, longer course of antibiotics, Trimethoprim, and as I’m just about to take the very last one of that course I am happy to say that I have enjoyed a week of unbroken nights and controllable pain. That last phrase is something else I can expand upon as I have been doing an online course of pain management that my GP or possibly the MS nurses arranged for me to follow. I am now 2/3 of the way through the course which I have found interesting, not unhelpful, easy to do, and when I finish it I’ll tell you what I really thought about it. She, my new GP is also wanting me to have an MRI followed by a consultation with Dr Muller as the ultrasound scan I had showed up various polyps and other things. That scan, twinned with the blood tests have made her wonder if there may be something else going on. So the NH are really performing ultra efficiently and seeming to explore all avenues as to why I have these debilitating spasms. I am reducing the dose of Pregabalin every 7-10 days and am now halfway down to where Dr Le May wants me to be. Now I’ve finished the course of antibiotics I think more tests will be done and I will have another telephone appointment with her.

But why do I keep getting these UTIs? I have my theories and I will elaborate further when I have something definite to say. In the meantime I am overwhelmed by the attention my GP is giving me. Is it because she has more time at the moment because the surgery is not full of people wishing to stay away or being kept away by the Covid risk? Is it because the time when I was unable to speak because of the pain which had driven me to tears at that point made her realise the distress I am in?

As you have probably guessed, from the fact I wasn’t broadcasting from the rafters, yesterday proved to be a complete non event.

The telephone appointment proved to be a very smooth and efficient way of being consulted by the doctor when there was no need for physical examination. Even when we lost the connection it didn’t prove to be a problem, and our conversation Was able to pick up and seemed to progress without a Further technical hiccup. He, Dr Kazmi, had been very well briefed and prepared by my GP and after a few more questions, he was able to tell me that my criteria did not match the necessary to get stem cell treatment. He was at pains to reinforce that even if I went privately there would be no point in having what could be a very tricky procedure; to put it mildly. I knew the risks involved and was more than prepared to run them but what is the point of wasting everybody’s time for a procedure, and an pleasant and lengthy one at that, that wasn’t going to improve my symptoms or my life? Dr Kazmi was basically saying exactly the same thing as Dr Brownlee and Dr Hari Krishnan had said about stem cell treatment. Dr Kazmi did mention that I could try other places in the world such as Mexico, but didn’t exactly advise that as a course to take. I want to make it quite clear this is not a funding issue, on either my part or the N.H. It is a hopeless case.

Needless to say, I was bitterly disappointed, as I had more than covered the implications and dangers involved in enduring such a treatment. It seems that the stumbling block was the fact I had no new lesions showing on the recent MRI scan. I knew this was an issue with taking the new drug Ocrelizumab (where the patient has to show new lesions). This was the first I had heard of such criteria being applied to HSCT. To my mind this was the last chance I had of slowing the progress of this disease so I have to admit defeat.