Author: 6mandi

I’ve now been aware of the fact I have this disease for a year and where have I got to?

If I had thought of making up a list of negatives and positives at the beginning of the year – even in the summer – it would have been impossible as the list would have been one long negative.  But I think I can offer more than negativity now having done my year of mourning for my old life.  Which is how I think of the past 12 months;  trying to come to terms with what I will never, ever do again and form some sort of acceptable reason for building a new life.  A new me.  I’m not sure I have begun to accept where I will end up (in a wheelchair) and being dependent on others for everything.  But with luck there will be a few years before I reach that point.  I do take my brother in law’s words to heart……carpe diem.  I am not in denial of how this disease will disable me but by not pandering to it I hope I can get some extra time.

The importance of pacing myself is paramount to a day’s existence.  I have been warned against overdoing it.  Well, that is impossible.  When the switch is flicked I simply cannot do whatever it was I was doing until the next day after a night’s rest and it is scary how weak I now am and the importance of getting as close as I can to whatever I am visiting is vital.  Otherwise I waste energy just getting there.  So spontaneity is a thing of the past.  I can surprise myself at what I can achieve if I plan it and I have no embarrassment in saying I cannot do something.  I have learned to feel a sense of achievement if I complete a tiny task, instead of feeling frustrated or pathetic.  If my existence is in a rhythm I can anticipate my needs and what I am able to do.  If something happens to break that rhythm it throws me.

What about pain relief?  Well……..I feel I have gone on about my agonies and serpents too much.  But to summarise:  When in California a rattlesnake joined the party but he was shaken off the stage when I had a relapse towards the end of our trip and he was completely scared off by the python and the cobra and and and.  I think I’ve worked out a rhythm as to when I have relapses, and at the same time have managed to reduce my painkillers considerably as suggested by the last consultant I saw.  I would love to be off them by Christmas, but I think it’s unlikely.  What I have learned is how crucial temperature is to my wellbeing.   If I’m too cold it is an invitation to any snake about.  Too hot and I find it really difficult to function.  The relapses occur at monthly intervals and last about 5-7 days.  I think I’ve been able to identify them as relapses because I’ve got the pain patterns sussed.   The CBD oil is vital and it works.  The oil with the THCs in is kept in a very safe place and I have yet to use it.  I don’t want to use it unless I really have to and also I want to experiment when we haven’t got people about.  Ever since our return from California we have had guests or something happening, and to be honest I’ve not needed it until the end of last week up until now.  So I’ve just had a rather wobbly few days and excruciating nights.   I hope it may be over by the end of the week which means I may get through Christmas without a relapse……let’s see.

Something that may interest you.  It is very very difficult to get the CBD oil with the THCs in (let’s call it legal Cannabis).  GP’s cannot prescribe it and I think my  consultant could but the NH one is nigh impossible to get hold of (I can’t even get an appointment) and the latest private one I have yet to try.  As I have it, I do not need to ask him.  I will ask him as a matter of interest, and report back.  All I’ve got to do is send him an email.  Let’s see.

When we were in California I thought I would try and obtain it, although I was not that worried as I was confident I could manage with my current cocktail of CBD Brothers purple edition and the low dose of Gabapentin.  So, when in Santa Barbara I tracked down a supplier who was just off the highway so we wouldn’t have been making a massive detour.  Having got inside the building which looked like a sort of ”light industrial unit” we were in a roomy reception area with nothing in it except lots of pictures and a counter with a very helpful, young lad and a locked door to his left by which was standing a big, burly man with a massive gun on his hip.  I explained I had MS, was on holiday, and would like some CBD oil.  “That’s fine”, the lad said “I just need your address so you can be referred”.  Well, as we were touring I didn’t have a US address but he said that wasn’t a problem, I could give a telephone number instead and for a fee I would be contacted by a doctor who could ‘prescribe’.  I had to enter my phone number into the text box which of course it wouldn’t accept as the configuration of numbers is different for European mobiles. They were incredibly kind and sorry they couldn’t help me but I had to accept I’d drawn a blank.  So off we went.  Whilst we were there a couple of people came in who were obviously known to the outfit.  Their goodies were brought out from beyond the locked door and they swiftly left.

I won’t be completely new:  my maths will still be crap,  I will still hate being cold.  I will continue to love colour and music.  But I can use it as an excuse when I mess up on a hand of bridge.  Or can’t remember what I cooked for supper last night.  Or the name of the film somebody recomended.  I wasn’t going to bother much about Christmas but now I want to do as much as I can.  Decorate as much as I can.  Cook as much as I can.  Shop spectacularly and entertain as much as possible.  So long as I plan it, I can do it.  I might not be able to do any of it next year.  

I have had a couple of weird things happening to my eyes which could be MS or maybe not.  The optic nerve is something in the line of sight of the disease and it now appears that may have been a sign of the disease taking hold, and labelled, to use the medics’ phraseology, a CIS (Clinically Isolated Syndrome).*

In layman’s terms  the first episode of neurological symptoms.  From what I can remember in 1985 I was just aware my sight was affected because of a blackness around the periphery of my vision.  Which lasted about 20 minutes or so, and I think it happened when I was hot.  In the past few weeks my eyes have just felt heavy, tired and a sharp pain inside my head.  Sorry – that is the only way I can explain it.

*i have explained all this already (13/9/2018) so I apologise for repeating myself.  See;  I can remember!

I’m publishing this post without a careful read through so apologies to you all if it’s all rubbish ………I’ve written it whilst in the tank with a paraplegic and his father.  The victim of a car smash.  He’s very young – 20 or so.  I have had a life.

 

Well, you may not think it is that exciting but……I’m getting a puppy!  So instead of being obsessed with what is or is not working in my world, I can concentrate on her, yes her, instead.  I went to choose a brown and white dog and came away with a black and white bitch.  Beautifully marked, intelligent face, kind shiney eyes, black shiney nose, big wide paws and a very waggy tail (undocked).  We collect her on Wednesday, so all free time is spent puppy proofing the scullery and kitchen and checking on the fencing.  Two escapologists (known as Daisy and Truffle) came to check on holes for us and found two!  Clever doggies.

We had a fabulous adventure in California and one of the pastimes on long journeys was mulling over names.  I already had one which I chose for another pup some while ago and then other names took precedence, so I now have the chance to use it.    The criteria my fellow travellers had to work round was that the name had to have an X or a Q or a Z in it.   As we approached the Mojave Desert we passed a notice signifying we were approaching Zyzzx.  I’m not joking.  But it didn’t have a Q in it.  But neither has her chosen name.

My companions were concerned about the continuation of my hyperbaric treatment or the discontinuance should I say.  I was grateful for their concerns and on the few occasions when the pains nearly got the better of me, I did wonder if I was doing the right thing.  But, the attacks could have happened anyway, and the relapse certainly would at some point.  That occurred on Hoover Dam day and the relapse could have been brought on for all sorts of reasons, whether I had been up to date on oxygen or not.  Possibly having been 190’ below sea level in Death Valley didn’t help, particularly as we had been at around 8300’ 3 hours previously……..I wouldn’t have missed any bit of it for the world, and I learned a bit more about the need for empowerment:  A new word in my vocabulary.

So it was good to have a break from life in Kent and evaluate my life there and put into perspective the good and bad bits of my new existence.  Which is what it is.  The diagnosis was dropped in my lap about a year ago now.  It has taken that long for me to realise and accept my condition and I can definitely feel and witness a deterioration in my day to day abilities to do ordinary things.  A year ago I was concerned about the denial of things that weren’t day to day like swimming, or riding, or going for a long walk.  It is quite ridiculous for me to even think about those things now and I have to plan my day just basically existing and I try and keep a little fuel in my tank so I’m not completely wasted.   Training and excersising the puppy will have to be carefully built into each day and I am confident we can do it between us.  But if I wait any longer it may not be possible.

So that is my long term project now.  My life has changed irremediably and, after mourning my old life for the past year, I begin a new one now.  I can’t predict where I’ll be in six months or six years in terms of ability.  Let’s see.  People tell me not to overdo it.  Well that’s quite simple, I can’t!  Depending upon what I’m doing it’s like somebody flicking a switch and I just can’t make those limbs work.  Recently, an actress (Selma Blair) has been in the news with her diagnosis of MS and she likened it to having a broken GPS which is an analogy that fits well.  I know where I am and what I should be doing but the messages are not getting through.  Balance is a joke.

However, I hardly dare say it, but I am managing the pain better.  That is not to say it has disappeared, but my strategy of coping with it seems to be 75% successful and I still have the interesting CBD oil up my sleeve for when it becomes just too unbearable.  I am doing my utmost to get off the prescribed drugs and so far, so good.  Not there yet, but that is my ambition for the rest of the year.  As well as house training the puppy.  2019 will bring puppy training which could be never ending…………………………………….

I hope my next post will be that I’ve come off the prescribed pain killers.  There’s a challenge.

I’m back.  I’m back in so many different ways.  But first of all my apologies for having been away.  And I have been away.  As many of you know, we have had the most amazing adventure in California and when I tried to post something out in the USA I couldn’t get onto my site to write.  I could read it, but I couldn’t add to it.  Put it down to sheer incompetence on my part and, thanks to my good friend who got me started on this blog, I am now back on track.

A reason for not really wanting to add to this blog whilst we were away, is that my writings would have been about our experiences in California, although the purpose of the blog was just as an update on my MS rather than how long it took to cross Death Valley.    So by being shut out of my blog (all I had to do was reset my password.  Durrrr!) you were all saved a daily report on our travels – which were fantastic.

I am going to continue the reasons why I feel “I’m back” in the next post.  For the time being I wanted to let you know that I’m fine.  I cannot say I’m any better.  I never will be.  But a month away has done me the world of good and I have returned  to start my new life.   A busy weekend coming up with a full house – a house full of musicians.  And I have some very exciting news………..

 

As I walked into the Centre this morning I immediately recognised a woman I hadn’t seen since March.  In short, she has Fibromyalgia amongst many other gastric problems and, at the beginning of this year, had come over from the French/Italian border to try out the hyperbaric treatment.  Of course that involved renting a house here which made the whole operation even more expensive.  

But it was such a success for her that she has come back for a 12 week stint in the hope it will keep her going for longer.  She said she will worry about the logistics for the next trip when she gets to it, but at the moment her quality of life has improved so much it is unthinkable for her not to have the treatment.

So, I saw Dr Silber two weeks ago, and I have been ruminating over what he had to say ever since and asked more questions since the consultation.

Obviously, he cannot prove it, but he seems to think the episode I had with my eyes back in 1986 was probably the start of it and I then went through a very long period of remission.  I think that episode is called a CIS (clinically Isolated Syndrome) and I then had a very long period of remission before starting to have problems with my walking over the past 12-15 years (after around 30 minutes I was aware my right leg would not be working the same way as the left one which became a pronounced limp by, say, 2015).  It was only when the pains began to affect my sleep and mood AND the change in GP that I began to ask if someone could look into the reasons why I was having problems.  

So in retrospect, I have had  30 years of blissful ignorance and for those of you who know other people with MS and can’t understand why they seem to be “OK” bear in mind the above.

The bulk of the consultation was him thoroughly scrutinising the scans and asking the usual questions and tickling the soles of my feet etc and at the end I was able to ask about what DMT stuff I may be eligible for.  On the basis it is now Primary Progressive there is only Ocrelizumab which NICE have said they will not approve for use under the NHS or Rituximab, which I can’t comment on as it doesn’t even appear on the MS Trust website and the MS Society’s comment is “(also known as Rituxan or Mabthera) is already licensed to treat some lymphomas, and is being tested as a treatment for MS”.  It is a quarter of the price. The prices of both of these drugs are eye wateringly expensive (well, I think they are) and the scary thing is that they are not just an occasional dose, but maybe twice a year.  And there is no guarantee they are going to work – indeed may result in something terminal.  So I’m thinking that if they are under trial surely the drug company needs someone to trial them, so why don’t they foot the bill?  

So that’s my homework over the next few weeks.

Dr Silber also prescribed a hefty dose of Methylprednisolone (steroids) which, compared with the last time I took cortisone, is now taken as a hefty dose over 5 days to hopefully kick start the immune system and set it off in the right direction.  For a while.  How long?  Dunno.  When is the best time to take them, bearing in mind the adventure we are about to take?  Dunno.  No one can advise and it’s down to me to gauge possible benefits and side effects with what I’m doing.  In the meantime thank God for CBD oil.

Dr Silber suggested I reduce my dose of pain killers (Gabapentin) further, which I am dutifully doing.

So that’s where I am.  Actually I’m sitting in the chamber at 24’ of pressure and no snakes to be seen.  After last night’s shenanigans I think they’re all too tired.

FIRST FALL

Actually it wasn’t the first as there have been a couple of times in the garden when I’ve ended up marooned in the middle of the Michaelmas daisies and tangled up in the fence by the rhubarb.  They don’t count.  And have I had a fall, or did I fall over?  Hhmmm.  Neither;  I tripped over a box at the top of the cellar steps and then lost my balance.   I take it as a warning.

But there were a couple of things I wanted to say prior to tomorrow as that is the day I’m going to see another consultant.  This one consults from a BMI place in Blackheath and has been promoted by a neurologist who has a home locally but who practises in London.  He presumably didn’t think he could help me himself (although I gather has been responsible for some weighty charitable donations to KMSTC) but suggested Eli Silber who I am seeing tomorrow.  I am not expecting him to waive a magic wand or deny my diagnosis but I would like to know if he can point me in the right direction to get some DMT (Disease Modifying Therapy).  I asked Consultants Nos. 2 & 3 if there may be a possibility of the new drug Ocrelizumab and got a flat no (wrong sort of MS) ditto Stem Cell Treatment.  But news and views are always changing and I cannot believe there isn’t somebody out there who will help me.

By chance, there was a talk given at the Therapy Centre last week by a much liked Neurologist called HariKrishna (really).  The talk was about the new treatments and drugs, their pros and cons and also his personal view of their efficacy, costs, availability, funding, drug company involvement and a q and a session at the end.  So I feel better prepared to meet tomorrow’s consultant and will hopefully get somewhere.  If I am fortunate enough to be used in a trial that will then present me/us with the query as to whether I feel strong enough to do it.  One day at a time.  He may just present me with another hopeless diagnosis and who am I to argue with a brainy brain man?  But I have got a few more facts and figures today, than I had at the beginning of the year.

Perhaps the reason why I’ve had a bad weekend is because I’m only doing one hyperbaric treatment a week instead of two?  I noticed this at the beginning of June when I had a six day gap between sessions.

So Ive just booked a second one for this week;  tomorrow and Friday

Sclerosis – from the Greek meaning hard.  In medical terms the word is used to mean ‘stiffening’

Multiple – ummmm.  Many?

So, many hardening/stiffening.

Why then, if the explanation given is that in MS the nerves are stripped of the myelin sheath;  what is the link between the stripping of the nerve coating and then the hardening of the muscle?  Does the stiffening occur because of the deprivation of nerve communication?

This pondering has been knocking about in the back of my brain for some months but has been stimulated because of a rough weekend.  By the end of it my right leg feels like the lid of a sardine can where the key has been used to open the can (do these tins of sardines still exist in today’s 21st century style packaging?). The muscles (tendons? ligaments?) in my right leg are so tight and unmoving now it makes trying to walk painful (before, when I limped it was just because the leg didn’t seem to work properly; now it HURTS). Those organs are like a tightly coiled tin lid and trapped with no means of releasing them.  It would be an awful lot easier to just sit in a wheelchair in order to get about.  Add to that my balance issues, it does make getting about quite tricky.  I walked at the edge of the lane yesterday and whenever a car passed me I was aware of hanging onto a fence or bush or wall, just in case I tottered over into the path of the vehicle.

My right hand is definitely worse and when I’m tired, positively claw like.  Added to which I have no strength in it so opening a tricky lid or unwrapping a packet of biscuits, doing up buttons or cracking an egg is not easy.  Not impossible, yet.  But its easier to use my left hand.

As I have said, I do not want this to become a diary or a pain diary or a means to whip up sympathy.  The object is to explain to you all where I am at in terms of this bloody decline and so when I do see you on a social basis we do not spend the whole time talking about the Sclerosis Monster.  But it has occurred to me that I have shied away from an explanation of what it is.  I have said repeatedly that the symptoms (and diagnoses) seem to never be the same as the next person but there are some things that are the same and these are the chemical/internal “goings on” which explain the disabilities.  If you have bothered to follow up the links I have sent you and are now au fait with what MS is then forgive me.  But I know there are some people who may like more information.

MS is an autoimmune condition.  My immune system, which is meant to protect me from infections has started to attack me (which, in fact, it has been doing for a long time manifesting itself as psoriasis and alopaecia).  With MS, my immune system is attacking my central nervous system which consists of the brain and the spinal cord. The spinal cord sends information to the brain which in turn sends messages to my body parts.

But, with MS the messages get interrupted because the myelin sheath which protects the nerves has been attacked by my immune system.  As the myelin becomes more damaged it affects the nerves ability to send messages quickly and efficiently and this is what leads to the symptoms that are obvious to either me or an onlooker.  To begin with my brain had some sort of ability to repair the damaged myelin but over time it has become more and more damaged.  This is a process known as demyelination and the nerve fibres are exposed and wrecked.

The affected areas become inflamed which is my body’s attempt to defend itself and these inflamed areas eventually become lesions, otherwise known as plaques* and form in the brain and spinal cord.

In an attempt to help my system sooth the inflamed areas I have adopted a diet which helps that process which has meant cutting out gluten and a few other food stuffs to which I am apparently allergic.  Added to this I consume fistfuls of supplements such as Fish Oils and Vitamin D, IS complex and Turmeric and a tonic supplied by my herbalist.  You may remember that I mentioned her earlier on in my blog as being somebody (indeed the only body) who took time and interest in me and offered something that I felt may help my predicament.

So here I am, 7 months on from swallowing all these pills and potions and is it doing me any good?  I honestly don’t know, other than people say I look well.  Which can be rather infuriating as they don’t know the agonies under the skin.  But don’t stop complementing me!

 *I can’t vouch for the accuracy of this, but I learned from an MS sufferer in the chamber that sometimes MS is diagnosed according to the number of plaques that are evident on the MRI scan.

 

OK.  Lesson over.  Another request from a follower was that I post a who’s who.  Dramatis Personae to follow.

It’s 4am.  On the pain front it’s been a different weekend;  and not necessarily for the better.  But I’m not just writing this to record the pain experience but to give an example of what the CBD oil does and how it behaves.  I realise that sounds odd but all will be revealed.

When the nerve pains began last year and they were really bad I used to gain some solace from the fact that each spasm would only last seconds so I would get a few extra seconds without the squeeze/tear/stab/burn/screw – and after a couple of hours of the spasms they would ease up and I would then be able to sleep.  But Saturday (day before yesterday) the pain was constant.  And it lasted 24 hours.  Luckily, the majority of that time was in daylight hours and I could distract myself by either doing something or going somewhere which did help.  And I managed to get six hours uninterrupted sleep on Saturday night and a good day on Sunday.  Although the serpents left we weaker and wobblier.  

Welcoming my 91 year old mother into the hall for Sunday lunch was rather amusing as we both stood holding each other steady whilst she got her limbs sorted out from having been sitting in a car for a while and I hadn’t concentrated on my balance having been sitting and reading the paper in the kitchen whilst the wind howled and the rain beat on the windows.  Whereas I would have leapt up in the past to welcome her in;  it all takes a bit of planning and time now.  But neither of us fell over and we made it to the kitchen table to enjoy a bit of lunch.  

The above 24 hours coincided with my CBD oil running out and purchasing a new bottle.   The oil comes in a small brown bottle with a pipette lid and I squeeze a couple of drops under my tongue.  I am told that that is the place where a liquid is absorbed most quickly into one’s system – and it’s what it says one should do on the instructions that come with the oil!  But on Friday I noticed that the oil seemed to have got stuck to the bottom of the bottle and then I realised that it had gone solid.  Also the nature of it had changed in the last couple of doses.  So, on Friday night I warmed it up and it quickly ‘melted’ but seemed to be less viscose and much thinner and weaker looking.  When I bought a new bottle on Saturday morning it was interesting to make the comparison.  

I came downstairs just now and took another dose of oil (the new one!) and 10 minutes later the stabbing is less and in the time it has taken me to write the above I now feel I might be able to lie down and maybe even sleep.  Let’s see.