Mandi’s blog

I apologise for sounding so down in the dumps in the last post, but I was.  But the main reason for this post is to apologise for my bad grammar  in that I may have given the impression I was having my last session in the hyperbaric chamber.  That is not what I meant, it was supposed to read “on my way to the most recent session in the chamber”, not the last one.

Extremes of temperature are not great for me.  It is something of a joke with me, I know, that I’m always cold in the winter and I am impossible to travel with as I always like the car/plane/train/whatever several degrees warmer than everyone else.  But the heat of the summer is far too much for me to cope with.  Fatigue is the perfect word for this sort of disability.  No, it’s not feeling tired.  I find it is just a feeling of weakness, but not from the head – or heart.  Imagine a steel girder with metal fatigue.  It is suspended there perhaps as part of a bridge.  And one day it finally gives way;  there is nothing to be done and it is rendered useless.  And linked to this, in my case, is spasticity.  Spasticity is a symptom of multiple sclerosis that causes your muscles to feel stiff, heavy and difficult to move.  Another excitement to look out for is spasms.   A spasm is a sudden stiffening of a muscle which may cause a limb to kick out or jerk.  The latter has not happened to me yet, and may not.  But I think the spasticity is quite enough.  

I think the word “spastic” is considered politically incorrect today, and what did The Spastic Society become?  When I was being diagnosed a question I was asked by one doctor was “How did I feel my symptoms were altering my life”, so I answered, saying I was aware of spasticity in my limbs.  The doctor immediately quizzed me on the use of that word.  I’d say he was in his early 50s and not English and perhaps not aware of that Society having had quite a profile when I was a child, therefore I knew people affected and understood a little of how the condition altered their mobility and muscle use.  Therefore I found it an appropriate term.

So, add that to being in the Wibbly Wobbly Club, it’s a laugh a minute.

You’ve probably guessed, I had a rotten night last night.  Monty and Claudia were having a party and there’s a new kid on the block.  Harriet the Honey Badger.  She’s sunk her teeth into my right arm affecting it from the elbow down.  For a year now I have been aware of my right hand not having the deftness it should have.  Holding a needle is not good.  Picking up scrabble letters really tricky.  So you can imagine what playing the piano is like?  But last night was the first time I have experienced the same sort of pains I have been having in my back and leg.  Although, admittedly, I have had them in my shoulder.  And what comes after my right arm has been mangled?  The left side?  My eyesight?  My brain?

On my way into KMSTC for my last hyperbaric session, I was planning what I was going to write about.  I have stated before that I do not want this to become a Dear Diary affair, and the whole idea is just to keep you informed as to where I’m at in terms of dealing with this monster and along the way maybe enlighten you as to what MS is.  I have directed you to the MS Society and in terms of books, Professor George Jelinek for the sort of information of a very general nature.  Everyone’s version of MS is different and that is why it is so difficult for those specialists out there to diagnose it.  And then when they have, there’s not a lot they can do about it.

I’m feeling rather negative about the whole thing at the moment for reasons upon which I may elaborate.  But first I want to let you know about one of my fellow “divers” today.

We are in the small tank, which seats four, 2 of us have MS and to my right is the carer of a lovely young girl with long blonde hair in a wheelchair.  The carer is gulping oxygen as she has found it helps with her asthma, but her charge is here because she is partially paralysed.  I had made a guess that she had had some sort of accident, on a horse maybe, and that turns out to be the case.  The oxygen is part of her recovery programme.  I won’t go into the details of the accident but I mention it as it has rather knocked me out of the self pitying groove I was getting into.

It’s not been a great week and I suppose something positive to say about it is that the pain has been controllable.  Cobras have had their hoods tied round their necks.  Monty seems to have been rather overwhelmed by my box spirals and is staying long and straight and although Esther and Edred have had a little excursion they’ve been quashed with diversions.

But there have been reminders of the life I once had, and will not be getting back.  My Life Coach had extraordinarily got me thinking positively about the new and delicious life I am about to begin;  embarking on a whole new way of living and relishing it.  However, the reality of what has to be changed on a practical level is not that straightforward.  I try to sit back and take a more laid back approach, but I find that difficult when I see obvious mistakes being made around me.

And my state of mind has not been helped by pieces of information about MS which have been made aware to me.  Like how dependent I will become on others.  For everything.  At the moment I am able to hold some sort of independence.  I am managing my limitations and so long as nothing unexpected crops up, I’m living a life.  Then suddenly I see something I used to

do (and took for granted) and realise I cannot do that any more.  Ride a horse;  swim in the channel; run on the beach.  “Well”,  I’ve thought “I’ve done that.  And aren’t I lucky that I have done all those things.  Time to do something different”.  But then, just meeting friends for lunch is not fun.  For a start, no alcohol and following a diet that is supposed to be low on things that cause inflammation (we’re talking about nerve endings here not a joint).  OK, that is quite easy really.    it’s when I realised I have nothing to contribute to topics of conversation:  my world has become so small.  Worse still, when I do say something, I am ignored.  Has my voice gone too?  Tell me honestly, when you talk to a wheelchair occupier and driver, who do you talk to?   I know which I used to do, because I’ve just done it.  But I have had a life.  A very full and productive one, unlike the girl in her early 20s sitting not far from me.  

Up until a few days ago I was possibly in denial of my condition, but I don’t think I was.  Just thinking positively.  But all of a sudden the very real dimensions of how my life will be have been thrust upon me.  And the worst part is losing my independence and being totally reliant on others.  

Is that me?

LPs

My life seems to be one long acronym now,  MS, KMSTC, MRI, RRMS, PPMS, SPMS ………

LP’s are not those black 12” vinyl discs in my new world, but Lumbar Punctures.

This procedure is supposedly the definitive guide for the consultant as to whether a patient has MS (and, of course, there are lots of other reasons for doing them).

So, one day in early April, we both went up to UCHL for more MRIs (which, we were told would be of a better quality than the others I had had done last year, due to superior “kit”) and the lumbar puncture.  I was very impressed by the smart machine which lived in the basements between Great Ormond Street and Queen Square and It was quiet (well, relatively) and fast.   A second MRI was supposed to be done with the addition of a dye but somebody had forgotten to get my blood tested to make sure I wasn’t allergic to the dye.  So I had to wait for that test to be processed and couldn’t have the lumbar puncture done in the interim as apparently it’s not a good idea to extract blood and spinal fluid at the same time.   And I hadn’t.  Major cock up on the part of the admin side of the whole operation.  Thank goodness they managed to speed up that particular department and at the end of the day I had the LP.  Two sweet young girls, doctors, carried out the procedure and it was swift and effortless and I didn’t feel a thing.  Truly.  The interesting bit was then travelling home when I was supposed to stay horizontal for a couple of hours.  A bit difficult on a commuter train out of St. Pancras.  But, amazingly we even got seats and I just sat at a sort of horizontal angle and went straight to bed when I got home.   No headaches.  Nothing.

DIAGNOSIS

A month later back up to Queen Square to see the (retiring) Professor who was still seemingly unimpressed with the MRIs and said that it all seemed very indistinct but was probably Primary Progressive Multiple Sclerosis.  “Let’s wait a year, and see what happens”, he said.  “But what about the lumbar puncture.  Does it show any oligoclonal rings?”, I asked.  To which he replied “No”.  

Oligoclonal rings are an indication of the build up of proteins in the spinal cord.  If these same proteins aren’t in the blood it is an indication that MS is present.

But, I have to believe somebody, somewhere.  There is obviously something wrong with me and this is the label they are giving it.  And I know I am worse then I was this time last year.  But I may have levelled out since taking all the extra vitamins and supplements and oxygen as well as being on a gluten and dairy free diet.  And no alcohol.   Well, only occasionally.

Well, a double whammy over the past 48 hours

The first, was receiving a letter from my consultant at UCHL thanking me for the information I had provided him with regarding a problem I remembered having had with my eyes back in 1986 (yes, I can remember back that far!).

After my consultation with him in the spring, I forwarded two letters that had been written by an ophthalmologist who I had seen in the summer of ‘86.   I will give you his brief communication verbatim:  “The Symptoms described are not typical of optic neuritis because both eyes were involved.  The visual evoked potentials you had with Dr X also did not show any definite signs of involvement of the optic nerves.  I think on balance it is unrelated and I classify your disease course as being primary progressive multiple sclerosis.  Good luck with the physiotherapy and I look forward to seeing you again next year.”

I was anxious to establish whether that problem I had with my eyes was possibly the start of the Relapsing Remitting type of MS because it may have altered the choice or indeed the qualification needed to allow me to try a new drug called Ocrelizumab.
And here is the second whammy.  I learned last night from the MS Society that NICE have rejected Ocrelizumab for PPMS.  If you would like to read more about this see – https://www.mstrust.org.uk/news/news-about-ms/nice-rejects-ocrelizumab-ocrevus-primary-progressive-ms-england-and-wales.

The MS Society publish numerous very helpful booklets regarding the various symptoms and problems encountered by those who have the disease.  And of course there is one on Understanding Progressive MS.  From this booklet I can tell you that Primary Progressive MS affects around 10 to 15% of people with MS.  The symptoms vary hugely – I think I have already said that in previous posts – and I take comfort from the words that there is no way to predict how fast the condition will progress.

So what can I do to slow its progress.  Think positively?  Lead as healthy a life as I can? (Diet, Exercise, Mindfulness etc.) Physiotherapy (yes, but note my comments in the earlier post) but overall – carpe diem (thank you Michael!)

 

 

The second experience I had up at UCHL will have to wait as I have a couple of conundrums.  The first of which will be a decision I need to make quite soon, and is relative to the last post so here goes……..

O2 in OZ – and NZ

The last post referred to a possible relapse or was it because I was late having my hyperbaric treatment.  We are planning a trip to Sydney, Melbourne, Auckland and Wellington (and all country we can do by car in between).   But….can I survive 6 weeks without hyperbaric treatment?  Well, yes, of course I can survive, but will 24 hours of travel x 2 be worth the possible discomfort I may have between times. The medics say;  “For goodness sake, we have the pain killers for you, there is always something.”  But a) how easy is it to obtain them when you’re cruising around and b) is it worth all the agro of the travel if you’re so doped up when you are there?

However, after a swift chat with today’s chamber operator, Pippa, and Karen who is in charge of the whole Therapy Centre, I am beginning to think the trip may be possible:   Well, of course it’s possible but perhaps I mean feasible.  

Their immediate response was, there will be places around the areas we are going to that will have a chamber; particularly bearing in mind all the diving that goes on in those parts.  More homework to do. Plus, because I am away and on holiday I will be more relaxed.  So perhaps I won’t come back!

PS.  I’m now out of the chamber and on the way home (via a coffee).  I need to do more research into chambers out there and find out what letters of reassurance they will need that I’m not going to blow it up.  But new friend Pippa is all encouraging about going away while I can enjoy it.  Can you enjoy a great view and awesome county with a blasted python hanging round your neck?

The second conundrum is more ongoing

EXERCISE AND PHYSIOTHERAPY

Because of the advancement of this condition I am not able to do those things I used to.  I won’t bore you with the details – indeed one person said I will now be normal and achieve in a day what most people do – but suffice to say that thankfully I am out of sight when I’m completely wasted.  

So I am having physio once a week which means I am given particular exercises to do which aren’t going to make me better but just maintain the strength I have left for a little longer (at best).  Well, I realised that these exercises were working the same parts I use on a daily basis and if I do the exercises I then can’t do the things I usually do (gardening, sweeping, cooking, household things) which are pretty central to my wellbeing.  I do the exercises and then have to sit down and right the day off.  OK, I could do them in the evening but my muscles won’t play by then.  Unless I sit around all day and do nothing.  I need to talk to my lovely physiotherapist.

And I also need to introduce you to a new creature – Melvin – he’s a Man o’ War.

Since the last bad patch I had (1-2 weeks ago) a Portuguese Man o’ War has floated along.   Think exquisite pain.  He flicks a tendril and then lets it linger.  Strangely, the reaction is not to move away or break the contact at the point the pain is beginning, but to lean into it.  To put pressure on the actual spot;  real pressure with a point like a red hot skewer that will drive down into it.  My apologies to all Men o’ War out there who do not inflict their poison this way, but it’s how I visualise it and identify it as something different.  Thankfully, this guy only shows up in the daylight hours so I can move about doing those things like exercises to eradicate those tendrils that create hot spots down my right side.  When Melvin is done, Monty sometimes likes to snuggle up afterwards which is just a bit too friendly.   But, as I say, this is a daytime attack and I can handle that.  And they don’t like 24’ of pressure……..

PS2 (not sure such a thing is allowed but…) as soon as I got out of the chamber there was Melvin.  Bastard.

Lumbar Puncture next…….

The last week has not been good.  Was it a relapse just as part of the progress of this disease, or could it have been something I had or hadn’t done.  I have been trying to reduce the painkillers in the slowest and smallest amounts possible. But after  week of feeling progressively worse and also weaker and more disabled I was ready to up the dose again.   But by Friday I detected a lighter feel and then, when I thought about it, I wondered if it could be the hyperbaric treatment.

As we were away for the weekend I missed my treatment by two days, therefore I  had 6 days without the pure 100% healing oxygen.  I began to feel better 24 hours after the first dose, and after the second, all was well again.   And here I am, back in the tank again like Norman No Mates feeling well enough to write and share where I have got to.  But I could just be going into remission, as the medical profession may say and the oxygen has nothing to do with it.  Well, let’s see.

My next post will see a return to the long period of diagnosis as a couple of months after the Nerve Conduction tests, I returned to UCLH for MRIs and a lumbar puncture.  I want to record these events as both may expose an experience had or about to be had by others, in a different light.

So I’m now decompressing, and about to go home for supper after a gorgeous afternoon on the beach.  The best beach in the world.

 

 

I am not going to be distracted from what I promised “the next post” would be about, particularly as it is something of a hot topic at the moment.  But, after a weekend of the whole bunch of snakes behaving themselves – relatively speaking (think snakes with socks on) boy, are they making up for it tonight?  I got as far as 1.30am and pythons and cobras and electric eels have been having a party.  The last few days have not been without the odd squeeze or sting;  but controllable in that I was able to breathe my way through them and apply mind over matter.  So what did I do wrong yesterday?  I don’t know but it was only through moving about, standing and stretching have I been able to find any relief.  And holding onto the thought that the pains will go, eventually.  Until the next time.

I had been keen to draw attention to my use of CBD oil in an attempt to reveal the problem of finding pain relief from Multiple Sclerosis.  During the past few days of revived “Cannabis Control” interest in the media, it is perhaps an apposite moment to bring the subject up.  One reason for my reluctance to raise this subject is because I am not entirely sure I am fully in possession of the necessary facts to write about it, but working on the premise that the House of Commons has ducked the issue for so long, I am reluctant to follow suit.  

Two young boys with a severe form of epilepsy have been denied a form of Cannabis, which offers them relief from the severe fits that affect them on frequent occasions on a daily basis.  You will be aware of the stories, having been headline news for some while.   Therefore, you will also be aware that there is a difference of opinion amongst the powers that be, as to whether sufferers of epilepsy and in particular these two boys should be granted a licence whereby they are allowed to import a drug which, it has been proven, not only gives them relief from their condition, but could save their lives.

I find it difficult to write about this subjectively but I am relying on you all having some knowledge of this topic.  

I use a mid strength CBD oil which my herbalist has located for me.  To my knowledge it does not have any THC in it.  That’s the interesting fun part that is illegal.  To be honest I’m not sure of its efficacy:  in the same way I have no proof that all the supplements, oils and vitamins are doing me any good.  But when I’m not in pain I am far more accepting of my condition, I think better natured and more relaxed.  Therefore my muscles don’t stiffen (sea snakes) or spasm (pythons), and the nerve endings jangle (electric eels).  But the past 12 hours have not been nice.  And without sleep it makes everything worse. 

To look on the positive side I did get 3 baskets of ironing done whilst watching a programme about Kazakhstan!

 Back to the CBD oil.  It comes in a bottle with a dropper so the idea is you can carefully administer and control your intake.  As far as I can see there are no ingredients listed but I’m pretty sure it’s THC free.   Before I spoke to my herbalist about getting some, as I didn’t want to just buy off the internet, I had read an article in The Telegraph about GW Pharmaceuticals, a company in East Anglia who provide 44.9% of the world’s legal cannabis for medical use.  And it cannot be used in the country it is grown in.  

By coincidence, we have a man staying who is about to start building yet another plant and commercial space for the production of Cannabis Oil for G Pharm, all of which I think is exported as it cannot be used here.  The CE of GW Pharmaceuticals (of which G Pharm is a subsidiary) was on Today yesterday morning (Radio 4) talking about what they supply and how it is available, but only through GPs.

I have talked to somebody at G W Parmaceuticals who has told me that I can only get their version of CBD oil through a doctor.  When I next see my GP I will ask her again about the possibility of getting their version of this oil.

Of course I could hang around in the middle of our village and see what I get offered – which would more likely be Skunk, the other version of hash (Cannabis) which is harvested from unpollinated plants and has a higher level of THCs  which may lead to psychosis and more.  No thank you. 

I can see the arguments both ways but to me, one by far out weighs the other.  There seems to be a very fuzzy area between recreational and medical usage.  I don’t mean one can become the other but is it the media who have leapt onto that particular band wagon?  Therefore making the argument less compelling.  I am sure the legal brains out there will have a succinct solution, although controlling that allowance is another matter.

If you are interested in reading more about G W Pharmaceuticals just google that name and a whole host of media articles are there for your selection.

So I’m gulping oxygen again, and the pains have eased up.  I’ll know more when I get up.  So I’ll sign off when I’m in Waitrose with my cappuccino.

Postscript

Ive made it to Waitrose and here is a new and interesting conundrum.  I went down to the basement to park and took advantage of my blue badge privilege, right beside the lift.  Got out, wobbled to the trolley park thence to the lift.  Which is broken.  As is the one beside it.  So I made it up the stairs and only then did I realise I wouldn’t be able to carry my shopping down the stairs – even if I was fit and able.   “Never mind” said the happy helper “I’ll carry it down the stairs for you”.  Now I remember, whilst having my cappuccino, I haven’t got any bags………….

 

I didn’t go back to bed until about 10am and then only for an hour or so.  But I’m recharged.  The sea snakes have gone back to their quarters (where does a sea snake rest?) and I’ve been mulling over their reappearance.   Could it be from when I had physio yesterday one of the muscles or tendons or ligaments or something has hardened so much (sclerosified?) that when I try and activate it when doing an exercise, it objects?  

My next post was going to be about CBD oil.   But, here I am in the chamber again with two other people I know and a man I haven’t seen here before.  He is sitting opposite me, in the neatest little wheelchair I’ve ever seen called the Wheelchair88.  It’s battery powered (lithium, that he only charges once a week) and collapses down to a size that is easily put in a Citroen CV.   But the reason why I’m choosing to write about him and his chair (because I may as well start doing my research now), is how he came to be here.  He was diagnosed with MS 3 years ago and has only just found out about KMSTC.  His consultant, MS nurse or GP did not tell him about this place and what it offers and he only found out about it through his own research.  I have now learned he is on number 15 of the initial 20 and is already finding a huge difference in his wellbeing.  So much so, he plans on being out of his wheelchair within 6 months.  My neighbour today has fibromyalgia and since she has been “doing oxygen” she has stopped all pain relief, discarded her stick and is free of brain fog.  The girl diagonally opposite me, travels from East Sussex each week and although the thought of the journey is rather overwhelming she knows she benefits by it – in particular the brain fog.

I’m not sure if the ‘brain fog lifting’ means they are thinking more clearly and positively.  That is how I interpret it and I will join them in saying that is the main benefit I have gained.  Yesterday was not a good day for me.  In spite of actually sleeping well that night and no pain, I had a big problem just carrying out mundane chores.  Do I put the mug in the dishwasher or make the beds first?  What a decision?  That took 10 minutes to sort out.

CBD oil tomorrow.  Very topical.

I think these are the worst of my visitors.  Fast, small, acrobatic, venomous bastards. It’s 3am and any thoughts of mindfulness or breathing my way through these attacks is laughable.  And what’s brought them back?   Recently, I’ve managed to avoid their visitations and when I woke up at around 2am I thought I could soothe myself back to sleep.  Not a bit of it and without doubt, getting up and doing something else has helped. Whether it is the moving around, or thinking about something else I don’t know, but I don’t even mind being awake when I should be asleep, if the pain has gone.  There is still one which lashes out at my groin and another whips out at my right wrist, but the sensations are dulling.  Perhaps they don’t like green tea?  Or being named and shamed?  I might just try going back to bed…….

Here I am, back in the tank again,  I come twice a week and apart from the lovely pure oxygen it is comforting to be with people from all over the place, with varying problems (but mostly MS sufferers) and symptoms, some who have been been coming for only a matter of months (that’s me, I’m very much a new bug) and others who have been coming years.  Monday morning at 10am is very much a routine session and I know three of the others (1 Fibromyalgia, 2 MS and the third, I don’t know.  I think she’s new). In particular on my right is Margaret, who has been coming here for years and years (I’ve just asked her, and she started in 1992).  Dare I say it, but if you met her you’d never think there was anything wrong with her except she uses a stick which is the only clue there must be something amiss.   Twenty or so years ago she used to come when the hyperbaric tanks were in a place they called “The Shack”, which was over the way from where this centre is now.  Various fund raising projects went on for some years before a more concerted effort was made and a local businessman matched every pound raised by the Centre.  The total needed for the new building and everything with it was £1.6 million, and having raised half that sum, the project was able to proceed.  It opened in 2015 (having moved the tanks across the field and into their new home) and is now offering all those treatments I mentioned in my last post, but perhaps most importantly in the Centre is a huge area, allowing plenty of space for all those wheelchairs and buggies that visit, as well as comfy chairs, tables, books, a kitchen and lovely people who are there to advise or support or just be a friend.  And I’ve come across many individuals who have been abandoned.  Not just by their spouses but also the system.  The NHS does what it can in its straightened circumstances but the time between appointments and counselling is ridiculously long.  I rather get the impression the professionals rely on the slow progress of this disease, and the fact it isn’t life threatening in the way Cancer is, for example.  Therefore sufferers of MS do not necessarily have the will, or resources to better their condition.  Thank God for this Centre because it is a haven not only for those who have been sidelined by the system but also for newly diagnosed people, like me, who don’t know what to do, or who to talk to or where to find like minded people.  My GP, who at least knows me now, and I’m not just Patient  X, has given me more than my allotted time, been on hand with hankies and has offered as much support as she could, but that was all she could do as a GP.

I hope I have illustrated how and why KMSTC has been a haven to me over these past few months.  There has always been someone to hand for advice or company. Support is there, in varying formats and I realise I am truly lucky to be living in this corner of England which has a Multiple Sclerosis Therapy Centre.

There is usually a chap here on Mondays, on this “dive”, who is very badly affected.  Not only wheelchair bound but he cannot use his hands and his speech is very badly affected.  He’s not here today and I know he has been in and out of hospital recently.

Just found out what the fourth person in the tank has.  She has MS too and is on the 15th of her initial 20 dives (the ones you have to do in the first four weeks).  She has had RRMS (that means the relapsing remitting Multiple Sclerosis) for 15 years and it is now worsening.  And she is finding it is already helping her, in particular with “brain fog”. That is an expression I find is used an awful lot when talking to fellow sufferers and I think I could put an awful lot of my befuddled thinking down to that! Particularly my arithmetic.  Those who know me well will remember that is a great weakness of mine.  No, seriously, I am not sure if what I think I have is the same brain fog other MSers have (I can’t keep using the word “sufferers”).  But since I’ve been using the hyperbaric chamber I now have a strategy.  I am coping better with the situation I now find myself in, or at least I feel I am, and I am sure I have more energy.  I’m not sure I’m moving any better and my right hand is worse, if anything.  If I could make that better I could manage everything else a lot better.  OK I can use it as an excuse when I hit the wrong notes when playing the piano, but I can’t sew.  Holding a pen is a big problem when I’m tired and doing anything where deftness is a requirement is a big no no.  Even playing Scrabble with my elderly mother is really difficult.  Picking up those pieces is not easy.

Riding is out of the question, as I have no strength in my legs at all.  I haven’t tried to ride a bicycle recently, but I’m not sure I particularly want to.  Two summers ago I had a memorable incident down at the Bay when I stopped my bike at a junction and stupidly put my right foot down while I waited.  My right leg is the weak one, and the next minute I was down on the ground with a grazed right hand and picking bits of stone out of my hand.  Two years ago, and then all I thought I had wrong with me was a wonky leg.

I’ve now left the Centre but as I left I photographed the board which shows the help this centre has received from local individuals, Trusts and companies.   I will post that photograph next, but will publish this one first.  I am scared I may lose it, even though I have saved it.  As well as losing my mind…