Tits Out for Multiple Sclerosis Why MS?


Easter 1998 and I wake up with 'pins & needles' in my feet and erm... other more personal places.  Nothing odd there, I figure it is just one of those waking-up kinda things.  In an hour the pins & needles are still there.  In fact, they seem to be increasing and I am not sure, but my hands seem a little 'fuzzy' feeling, too.  I give it another hour and as it seems to be still worsening, decide to phone the doctor.  I don't want to hassle the doctor by going in to see him.  It's the Easter holidays.  My doc though, has other ideas and tells me I better go see him.

Once there, I am saying how I probably have a trapped nerve or somesuch.  He looks at me and says that is possible, but he just wants to check a few things.  He sticks me with pins.  He hits me with hammers.  He makes me close my eyes and touch my nose.  OK - whatever turns him on, I guess.  He tells me to come back after the Easter hols, which will be 3 days time.  Unless things get worse, in which case, I am to call the surgery and get to see someone.

Well, over the next few days, my legs and arms become increasingly useless.  It is odd.  I cannot really feel them.  It is like there is cotton wool all around my limbs.  Bizarrely, I can still stand.  I am walking like a toddler in a full nappy.  My feet are 2ft apart as I am sure I will fall.  I have not called the doctors.  I 'feel' just fine.  Nothing actually hurts.  I am sure this trapped nerve will shake itsself out and if not, I'll go see the damn doc again, as soon as the Holidays are over.

The Holidays are over... guess what? I am still walking like I have crapped myself and I seem to have no feeling whatsoever in my hands.  This is becoming a 'party trick' and I am whacking my hands on the table and am amazed that I feel nothing.  Cool! Am a bit annoyed that I have little or no sensation in my 'Jack and Danny' though.  That's something that I can get concerned about.  OK, I'll go see the doc.

Within minutes, my doctor (having stuck me with pins, hit me with hammers, etc, etc) decides I should see a Neurologist.  Now.  Well, there isn't one in my home town, in fact I have to go about
60 miles.  It would have been further, but I have medical cover through an employer, so I get myself to see the Consultant Neurologist that afternoon.

He wants me to have an MRI scan.  The closest place to have this done? Back in my home town.  So I get myself back there and go to the NHS hospital.  They stick me in a wheelchair ("Let me walk!") and then in a bed and then tell me that the MRI scanner is 'switched off' and I have to wait until the morning.  Come the morning, I am still in the bed ("Where can I go for a smoke?" "Oh, nowhere. Right") and I am promised the MRI by 3pm that day.  I'll not hold my breath.

Three MRI scans later and I am wheeled (under protest) back to bed.  Someone comes and says to me "Well, your spine is fine.  There are a few things we're not happy about on your brain scans, though."   And with that - they leave me on my own.

What is wrong with my brain scans?  They took two because they were unhappy with the first.  Only one spinal scan though.  What have they seen?  Have I a tumor?  What the f**k is going on?!?

Finally someone comes and sits on the end of my bed.  Looking at his hands, he asks me if I have heard of a disease called Multiple Sclerosis.  Yeah, course I have.  Old people.  Wheelchairs.  That kinda thing.  He manages to gesture towards me with a slight incline of his head.  The penny drops!  He means me.  He hands me two small leaflets and vanishes onto the ward.  (Chicken).

I am filled with steroids via a drip and sent on my merry way within a week or so.  That's it.   No-one told me anything more.  No-one seemed to have anything more to say.  Except there is one drug that may be of use to me in the coming years, however, my local health authority will not let me have it, as it costs too much.

Thank the Lord that I have the internet.  Over the next few weeks I am downloading, printing, reading... soaking up information about MS.  I find the MS Society and they tell me that my experiences are not unusual.  No-one has anything to tell you, as no-one knows anything. Super.

I was 28 when I got my diagnosis.  The neurologist at one point said that looking at my brain scans, he thinks I have an 80% chance of serious deterioration within 20 years.  Well, that was 6 years ago.  I guess that changes the odds as I am fit and well right now.  Hopefully will be tomorrow, too.

I'm not going to bore you (any more) with tedious details, but if you want to know more, there are places that you can go, such as the MS Resource Centre and Jooly's Joint web pages.  Visit the MS Links page for more info.


Why Multiple Sclerosis (MS)?

Well, it's a couple of months down the line and I am prompted to update things here.

At the end of last year, I was having a bit of a relapse.  I was much weakened and upset by this. My GP made me a referral to the Neurologist.  However, I did not mention this, on this page, before because I thought it was just December weariness (too much food, too much money spent, far too much drunk, etc.) but, in hindsight, I now know it was the start of a relapse.

I was off work for the best part of March this year with increased symptoms.  I was suffering a lot of pain, spasticity and loss of sensation.  My eyesight seemed to be a bit shot, too.

At the end of last month (March '04) My appointment came through and off I went to the Neuro.  I
did not get to see the head of department consultant, but I was seeing someone at last.  I was told that I was suffering a relapse at the time and I was having one in November / December, too.

Well, as an upshot of this, I am finally being allowed medication!  I can have Beta Interferon or Copaxone.  The decision is mine, I believe.  However, as I did not get to see the main man... I have to wait for another appointment, this time to see the 'Prescribing Neurologist', so as I can get my meds.

As it is, I believe I am climbing out of my current relapse and although I was in hospital yesterday (went to GP with a pain complaint, he thinks I may have a thrombosis, jabs me with Heparin, arranges for me to go the next day and have dye injected into my veins and get x-rayed, get the all clear on blood clots) and have had another 3 days off work.

I'm going back tomorrow and, hopefully, I'll be back for a long stay this time.  My poor boss! I am so not a reliable employee at present.


Update April 2004

In July, I was finally given Beta Interferon.  Woo hoo!  Less relapses here we come!

The side effects are bloody terrible.  I had heard that this might be the case, but decided to take the Disease Modifying Drugs (DMD's) just the same.  Hey, I'm ill anyway, what more can there be?

Well.... The injection, self administered, three times a week, isn't too bad.  But it does hurt.  Not the needle, but the bit where the drug is squirted in.  That hurts.  Also I get a skin reaction where it has been done.  You have to vary the injection site because of this, but despite doing that, I get red welts about an inch and a half in diameter that are raised and itchy and very, very rough.

Recently, I have stopped using the auto-injector device they provide you with and have started manual injecting.  Putting the needle directly into my own skin and pushing the plunger.  I can do this at a much slower rate than the auto-injector can, and so far, this seems to be making the injection sites less aggravated.

The other side effects did not start that bad, I am thinking it may be having a cumulative effect as the months go on.  They tell you to expect 'flu-like symptoms".  Damn right! My muscles are aching like I have just been working-out for 10 hours solid.  (OK, I imagine it's how you feel after a work-out -- how would I know?).   From the shoulders down I hurt.

I am not sleeping.  I lie awake (hurting) and I have recently been told, by my MS Nurse, that insomnia is also an expected side effect.  This is the first I'd heard of that one.

The blood tests I have, to see how my body is reacting to the DMDs have shown a dramatic increase in something-or-other to do with my liver.  I looked this up on the 'net and got scared by what I saw. On contacting my Neurologist, he told me not to worry and carry on with the drug. Here's an example of what I found on the 'net: Health Canada warns of liver complications from beta-interferon use for MS

I am currently off work because of all this. My boss and someone from the HR department came to visit me at home today.  The HR dude told me not to feel pressured to return to work.  She said that whatever my doctor says on Thursday, when I see her next, not to come back to work yet.

I was told that they are writing to my GP (with my permission) to see if the Doc thinks I should be working, in my current job, or not.  They began talking about me being 'retired' on health grounds.

I was planning on going back this week.  *tuts* I have just taken delivery of a brand new Vauxhall Zafira via the Motability scheme.  It is an automatic and therefore much easier for me to drive.  I wanna drive my new car!!

Motability is brill, by the way.  Anyone reading this that is considering it - GO FOR IT! It takes about half my monthly DLA payment, but I only have to pay for petrol.  They insure and service it.  They replace tyres.  The tax is covered by the Government, too.  I get a new one in two years, or so.

Money is still (slowly) trickling in to the MSRC via this venture that is VixPix.  Now that I am not doing so much publicity for it, things have slowed down.  But feeling like this, I really do not want to be talking to the press and posing topless for them. I am so tired!

Still, I am still able to walk, although it is slow and wobbly. I am still able to talk, although my partner is probably none too happy about that.

I am determined to give these drugs a run for the money in hope that my body will eventually become accustomed to them.

Hopefully, by the next update, I'll stop feeling so bloody sorry for myself - sorry about that - but right now I think I'll try and get a nap.



Update September 2004

I went back to work, last month! My employers have been so very good to me.  They shouldered my five-or-so months off with compassion and grace.

I had to get back on the ball.  They let me return to work for one day a week, planning on building up, gradually, until I am back at full strength.

Then Christmas Day was upon us.  The world seemed misty.  Could it be the copious amounts of Yuletide spirit? Well, yeah, of course. But there was something else.  No matter if I took out my contact lenses and cleaned them, no matter if I left them out all together and used my specs (more repeated cleaning of the lenses like someone with a obsessive-compulsive disorder) I still could not get into focus.

I perceived a cloud in front of my left eye. A milky thumb-print.  I moved my head to look around it. That didn't work.  I was beginning to look like a confused owl.  And ya know what? It hurt.

So after the Christmas bank holidays, I called the doc and go see them.  The doc decided I need to go to 'eye casualty' in the nearest large hospital.  An hours drive away.   can't drive!  I can't bloody see!  So they send me in an ambulance car.

When I finally get in to see the SHO, I am given a 'field test' which involves looking into a little hole and pressing a button every time I see a light.  Having done this first with my right eye, I quickly realize that my left eye is, well... fcuked.  I get upset and as I am doing the test with my left eye, I start to well up with tears, reducing my vision even more.

Then I get to do one of those Ishihara colour vision tests.  Remember those at school? Circles comprising of dots and splodges, within which are concealed numbers.  You can see them if you have standard colour vision. I could see all the numbers with my right eye.  None of them at all with my left.  It was like looking at a book of grey circles.

I got really upset about this.  I have no idea why.  It's not like failing this test meant I was stupid, or anything.

Well, the up-shot is that I have Optic Neuritis.  I pretty much guessed this would be the case. This
is usually dealt with with a course of steroids.  The eye clinic would not agree to that, as I am on beta-interferon.  They told me to go away and wait for it to pass. Could be days, could be weeks.

We had to get home again and had missed the last bus.  The NHS (God bless 'em) will transport you to hospital, but not back again.  We had to get a taxi which cost £40 and took 40 minutes to turn up.

So, my MS nurse was still on her Christmas hols, and I wait till the day she comes back to work and give her a call.  She is furious and speaks to my Neurologist whilst I am on the phone with her. He contacts my GP and gets me some steroids prescribed.

I took the full course.  They do not seem to have touched the optic neuritis.  It has been with me for 20 days, now.

Needless to say, I have not been to work since December.  I cannot drive as I cannot see.  I had just gone back, too.  Hey ho.

Still, it's not all bad.  I am feeling so good at the moment.  The side effects of the beta-interferon have gone.  I have found that if I inject it into my flabby belly, then the injections do not hurt at all.  The fatigue has lifted and my only complaint (other than the eye) is that I can't sleep.  I have some sleeping tablets but try not to take more than 2 doses a week.  I think if I was to get back to work, then I might be able to sleep again.  (Not that it's boring).  However, until I can see, I cannot drive.  If I can't drive, I cannot get to work.

Happy New Year!!


Update January 2005

It is the middle of the night (0232 hrs, to be precise) and I am awake and in pain.

Generally speaking, I have been good of late. Able to go to w*rk and able to go out and party, etc.

But it hurts.

There is always something that hurts, or is not working properly and some nights, that gets me down.

Mostly, I don't mention it.  I mean, it's tedious, innit?  Also, I find that if I pretend to everyone else, I end up believing the story myself, in the end.

I am off to the Neurologist soon and I really want to tell him everything.  I mean everything, from trying the hookie viagra to my nice, newly found, continence issues.  (Did you know that not being able to totally empty ones bladder can be really uncomfortable?)

If I have to go to work in my wheelchair tomorrow (yes, my legs feel that bad, at the moment) then I will not actually be able to get to my work station?  Does this mean I would lose my job? Would they find me alternative work?  There is none, I'll be honest.

You know, I work in a bank and they have someone every day, working in the banking hall, doing what we call "reception"? Well, you'd think I could do that, but the desk they provide, with the computer terminal, which is essential for the position, is on a desk 4 feet from the ground, serviced by a stool that would not be out of place at a bar.

Let's face it.  I am out of a job.

I so want to sleep, right now, but I do not know if I can.  No amount of "Caution! May cause drowsiness" pain killers seem to have an effect.

Nor does my old standby, cannabis.   Anyone got a hammer?


Update July 2005

A story about sex.

Going to the Neurologist one day, I was asked all the usual questions about my eyesight, my limbs, my memory, my mobility and of course, asked if I had any worries or concerns.

"I do. But I am a bit embarrassed," I say.  (Gees, the Neurologist must be ten years my junior and I bet he has far more luck with women, than I do - Is what I am thinking) I have to tell him that I have not had an orgasm for weeks.  No, months!  I have to tell him that no matter how aroused I feel, my "equipment" does not function as it should.

I bite the bullet.  I tell him.  He tells me that there are therapies available.  Pills even.  But I am not suitable for them.  They are not approved for people like me.

Needless to say, I am furious, but even more embarrassed, now.  "How dare you assume that that means sex is not important to me?  How dare you say that the able-bodied man, next to me in the street, is more deserving of orgasm than I am?"

I speak to my friend, Dave, (who has MS, too) who is astounded.  His neurologist ASKS him if he has problems like this.  He tells me that he can get Viagra given to him, for free, every month.  He says he has not got this problem, his tackle is all in working order!  (Thanks, Dave).  Yet every time he sees his doc, or his neuro, they ask him if he needs this treatment.  They ask him if he has any sexual issues, that could due to his MS.

What is his secret?  Is it a different Health Authority?  No!  The rules are the same in all the UK's National Health Service providers.

His secret is.... He is NOT a woman.

Update September 2005

Well, last year, I finally did it. I officially gave up working for the bank in May 2006.

In my time, at the Halifax, they were very accommodating towards me and my illness but, as I have mentioned before, there is only so much that can be done. After all, I was spending more time "off sick" than actually at work.

Since then, I have set up my own business and am now self-employed, working from home.

This hasn't really changed any of my symptoms. I still suffer from pain and fatigue, but I no longer have the stress involved with calling in to report another day off-sick.

I have put on a considerable amount of weight, I guess from not moving about so much, but I have not suffered from lack of orgasm at all. Not once (yay!). I think this must be due to losing the stress. To be honest, I don't really care why...

So, I am sitting in my bed and trying to think what there is to complain about - as generally
speaking, I only ever write an update when there is something to whinge over.

My legs are wobbly at the moment - but that is because I spent three days in Paris, last week, with my husband, where we walked and walked. Paris, by the way, is incredibly disabled un-friendly. All cobbles and steps. The Metro is a labyrinth of corridors with stairs. I was very glad to not be in a wheelchair, or it would have been a totally wasted trip.

As I was able to walk, it was incredible. And totally worth having the wobbly-walking after effects.

My eyesight is no better, but there again, it is no worse - so there's another good thing. Same goes for the continence issues.

All in all, I have been pretty damn fine for the last year or so. It is hard to not think that maybe this is the 'calm before the storm', but in the meantime, I am squeezing every second of every day. Which sometimes includes doing new photographs - so keep an eye out!


Update June 2007

Snow is lovely to look at, isn't it?

Through the window, from the warmth of your house. It's pretty and clean and something of a novelty.

I believe, however, that snow is a cruel trick from the Universe.

Walking is something you learn to do when you are about one year old. It is quite the achievement, but once you have mastered it, it's with you forever. Like reading or riding a bike. (Neither of which I can do any longer).

When I first got ill, I lost the ability to walk without looking like a toddler that has just shit it's pants.

I had what is called a "spastic gait". You walk with your feet about two feet apart. Nothing you try and do will let you walk like a normal person. Your head is telling your limbs to do it right, but they just won't.

After a course of steroids my legs (and arms, for I had lost any sensible use of those, too) got about 80% better and I taught myself to walk again.

It was different. I had to re-learn the art. It was frustrating and silly. It's WALKING, Goddamnit!

So, the way my feet perceive the ground has changed. I have to just try and rely on the fact that the Earth is below me and is behaving in the way we all know it to. It is solid and unforgiving and it sucks you down onto it like you're wearing magnet-boots and it's a big lump of iron.

It's the Earth. It's got gravity. If I do the whole "left foot, right foot" thing, I will get to my desired destination without incident.

Then... the Universe plays a trick on me.

It changes the surface of the planet (OK, the bit I have to interact with, anyhow).

You step out of the door and find that the reliable old Earth (solid, unforgiving, etc) has amended the rules.

For starters, the surface is a good couple of inches higher than it had previously been. OK, I can deal with that, surely?

My mind perceives the surface and calculates the pressure required to make that first step. (You know, you do all this without thinking, from the age of one).

It's snow. I am aware that this changes things, and that my step will sink through the surface and hit the ground, a couple of inches below.

I know this. I am prepared for this. I am an adult. An adult with boots on. Boots with a sturdy sole like the tread on a winter tyre. (The boots I used to wear when I rode my motorcycle. Another loss)

OK, here we are. I have stepped one foot into the snow. There has to be at least another step. Something is halting my progress. I think I want to take another step. I think I am asking my legs to do just that.

Do walking! Go on... jus DO IT. For some reason, my legs are unhappy to follow the orders they are given. This is something my head is doing without my permission. It has nothing to do with MS, it has everything to do with experience.

This is snow and ice. You WILL fall over.

If I manage to actually get out of the door I find my old friend, the spastic gait, has come to visit.

I should be using my walking stick. That would help. The problem is the stick is in my car. My car is out on the street, about 30 yards away.

Through the snow.

It will be gone soon. Where I live is usually too warm for snow to stay for more than a couple of days. All things must pass, after all.

Back in the house, I am perched on a Bambach Saddle Seat and making the most of it while I have it on a 30 day trial. It's marvellous and really helps when I'm in the kitchen, cooking, ironing, washing-up. I had recently been suffering with such tasks becoming more of a ball-ache than they are usually (for anyone that does them, not just for the broken people).

My feet were swelling up and my legs becoming excessively tired and wobbly. I now can do all these things on my Saddle Seat and scoot about the kitchen in a comfortable, supported way.

Very soon they will be contacting me to get the seat back (they delivered it and will collect it, all for free) or to ask for £400. Right now, I don't know if i can afford that. I guess Visa can afford it, but they want paying back, don't they? And I'll end up paying interest.

Can I justify this expense? I'm having a problem with that. It's hard to justify getting something that is just for ones own use, when you have three other people to consider, in your home.

Like a lot of people at the moment, my mantra to the family has been "No, we can't afford it". Can I then spend all that money on something that is purely for my use?

I have a wheelchair, but I also have a standard kitchen, ie: if you're in a wheelchair, you cannot reach any of the surfaces or the cooker or sink and just forget the cupboards.

This wee stool is gas lift and allows me to access whatever I like.

But... four hundred quid? FOUR HUNDRED QUID?!?

Health update, then.

Eyes: Still fcuked. If anything, getting a little worse, but that could be more to do with ageing than MS. I turned 40, this year.

Bladder: No change. Still a little unreliable, but manageable.

Legs: Painful. Incredibly so. A recent course of Physiotherapy actually made the pain and stiffness WORSE and I was discharged by the Physio telling me it is a "textbook case" of a known MS thing, blah, blah, blah.

The sex thing: Not really suffering with any disfunction at the moment, but this is a constantly
changing thing, and what may be fine one day, is far from fine the next. It is still not something I am even asked about by my Neurologist (I'm on Neuro number five, I think).

Generally, I am still walking and talking with what I can see as a slow downward slide in ability.

I struggle with finding words when I am speaking and I am finding I am having trouble swallowing ( :lol: ), every now and then. I cough and splutter over a glass of water. Swallowing, like walking, is something I thought I had mastered quite early on in life.

Things I want to tell you: Refusal of Sativex; increase of dose of other meeds; Physiotherapy debacle; mindnumbing boredom of not going out to w*rk. I think I need a blog.


Update December 2010

And I have started a proper blog.

Any further updates will be found HERE.