MS and all kinds of trouble

MS and I haven't had been having a good time what with one thing and another.

The week before last I cam down with a bout of tonsillitis.That meant that I had to have my second course of antibiotics this year. Fortunately this infection wasn't so bad so I managed to keep on going and wasn't sent back to bed with a re-occurence of my MS symptoms.

Last Monday I had a routine appointment at the hospital to see my MS Nurse. This should have been a simple undertaking. The buses were on diversion but I had a plan. Bus to next stop along, cross road, get correct bus on its diversionary route, arrive hospital.

It all went wrong when I missed the bus as I was crossing the road and there wasn't another but for a quarter of an hour (by which time I'd be late). No problem, I thought, I'll walk - it only takes 15 minutes. Only 15 minutes for an able bodied person who walks unassisted. Lucky I had the wheelie-walker with me, so I was able to take regular rest-stops. I got quite hysterical at some points... when I discovered there were no temporary bus stops; when the officials directing traffic for the Olympic test event (that was diverting the buses) wouldn't let me cross the road and made me walk the long way round.

I arrived at the hospital and they gave me a glass of water before my appointment (I was only half an hour late). At the appointment we discussed the new oral drug that has just been approved by NICE - I've gone off the idea rather since I've read in the press of a number of deaths linked to it. My Nurse said they have more stringent tests, but only half of them were to do with heart problems. Until they find out what caused the other half I don't feel that I want try that one. So no new progress.

Lucky I was working from home so I got to have a nap before getting down to work. I also had physio in the afternoon, were I got some information about exercise schemes that I can participate in. Time to get fit.

Saturday I decided to go to the St George's Festival in Trafalgar Square. This worked out not too badly because I took the wheelie-walker with me again. It still is a bit of a nuisance to get on and off transport, but that is out-weighed by the 'having a seat' aspect.

Today was a particularly bad day - caused by human error. I took my morning tablets before I put my glasses on. Instead of taking two antibiotics I took two Clonazepam. These are the tablets I take at night before I go to bed which relax my muscles; I take one. I rang up the NHS Direct to make sure that I hadn't poisoned myself. No, happily was the answer. The problem was my muscles were like elastic (quite nice to get a relief from the spasticity) and I felt like I was stoned; my boss sent me home and I spent the rest of the day asleep. Feel much better now.

The rest of the week is looking like a series of taxi rides - my boss is double and triple booked so I have to go to several meetings. If I walk (from experience) my week will be shot as the fatigue will come and get me; taxis it is then.

I'm hoping to start my exercise regime this week. Beginners Tai Chi on Wednesday night and Music and Movement on Friday morning. I discovered on the ill-fated walk to the hospital which is half a mile that I really am horrendously unfit - so I'm going to get back into shape.

A new freedom

A wheel-chair is an excellent way to get around when your legs don't work. I've never tried to get myself around without someone pushing me for any length of time... but the short periods I have experimented with prove that I need a little more arm strengthening exercise.

Crutches are an excellent way to get around too. The problem is that they still require input from your legs. After a distance (a not very long distance these days) my legs begin to give out. Aching, stiff and finally pain.

Enter my wheelie-walker. I can still walk supported (as with my crutches) but when I get tired and my legs give out I've got a seat right with me. On a bus, on a tube - or my favourite; when I take a walk and forget that I have to come back again.

We are Spartacus

When they think about Spartacus most people think about Stanley Kubrick's film and Kirk Douglas as slave Spartacus. You're mind will then probably go to the scene at the end when the slaves are asked to identify Spartacus in exchange for leniency; at which point each of the slaves proclaims "I am Spartacus".

The Spartacus Report and campaigns are all about welfare reforms that effect sick and disabled people. The name could not be more appropriate, because we are all in this together. 

All of us. Nobody plans to become sick, nobody plans to become disabled. Nobody wants to become reliant on benefits to make sure that they can live the life the life they want to live; the life that everyone else takes for granted. Today you are able bodied, today your body does what you tell it, today everything works as it should. But who knows what is around the corner. Perhaps tomorrow you will be Spartacus too.

Benefits have had a bad ride in the press whilst the Welfare Reform Bill (which passed into legislation last night) made its way through Parliament. The media like to focus on the 'cheats' and the 'scroungers' - those that they consider work-shy or undeserving in some way. The media is horrified that people can go to work and still claim some sort of benefit; or that they can be photographed (as recently was seen in the press) living and apparently 'normal' life.

Benefits enable the sick and the disabled to do these things (the things that most people take for granted). Being disabled can get expensive. A dozen things that most of us do every day are difficult or impossible for disable people without some sort of aid. Often little things to help with dressing, bathing, around the house - but little things add up. Sometimes big things to make sure that mobility inside and outside is possible. Big things add up too.

It took me a long time to accept that MS made me a disabled person; and I count myself fortunate that generally I am still able to do most of the things that I want to do - but a lot of the friends that I have made in the online community aren't; and I'm always conscious that one day I might not be able to either. This is an important issue... some people affected by these reforms aren't readily able to speak for themselves - so those of us that can, must.

If you'd like to read more from people who have been involved in the campaign see the links below:

• A Latent Existence
• Diary of a Benefit Scrounger

Take some time, read a bit about it, and maybe join in the campaign - because one day, it might just be you that needs some help.

MS... little victories

When you are sick there is a period where personal hygiene goes by the wayside. The first couple of days when you are too feverish and sleeping so much, you don't notice. Then there is the initial convalescence phase when you are weak as a kitten, still sleeping most of the time and don't care. Finally you reach some sort of consciousness and only sleep some of the time. This is the point when you realise you smell.

That was Saturday for me (well actually Friday - but on Friday I still didn't have the strength to do anything about it). I got out of bed and gave the bed a huge dose of Febreze (in lieu of actually stripping and washing the bed clothes). That gave the bedroom a nice fresh smell. I then took me off to the bathroom. I managed to run a bath (yay!), get in the bath (big yay!), have a decent wash (huge yay!) and get out the bath at the end (relieved yay!).

So successful I might do it again today! In the interim one takes blanket baths... not as I'm sure hospitals and the Victorians imagined them; baby wipes are the key... how to bath without bathing 101!

With MS you take the little victories where you can get them - and often enough the little things are big victories.

Dignity, always dignity

Remember that bit from "Singing in the Rain" when Gene Kelly's character is being interviewed and he says "I've had one motto I've always lived by: Dignity, always dignity". You then get a clip show of how he really got to where he was standing on that red carpet, and there wasn't much dignity involved.

Anyone who lives with a disease like MS knows where this story is going. Once you get a diagnosis you start with the endless rounds of doctors visits, hospital appointments, physio sessions, and interviews with all sorts from medical professionals to students doing their thesis (our hospital is a teaching hospital). Right now you check your pride (perhaps not your dignity) at the door - just remember, the medical staff are all human and they've seen it all before.

When you have MS and you go to see the Neurology department with a relapse before they'll prescribe steroids they insist on a urine sample. I have a shy bladder... it won't do command performances. Ah, the superb occasion sitting being fed glasses of water for half an hour (didn't help) it is now famously so, that, in fact, my MS nurse has given me a supply of sample bottles so I can bring one with me. This is what started this train of thought... the Doctor who came yesterday didn't get that memo, he had to wait 24 hours for his sample. Yes, my bladder can hold it that long when it knows there is a bottle waiting!

They're always wanting to take blood. Not so bad you think. Unless you're the sort who has a needle phobia (yes, still, even though I give myself shots). When I get a blood test (every six months at least) they have to take two vials, so it is a bit of a procedure. Every time I tell the phlebotomist that the left arm is best; sometimes they listen, sometimes not. If not what happens next is that they can't find a vein, my brain realises what is going on and I pass out. Then I have to lie down while I come round, have a glass of water, and hold up the very busy phlebotomy department. Not so bad really, apart from the horror of knowing you've just added another 10 minutes to the waiting time!

MRI scans are great. No metal allowed. No jewellery, no belts, no glasses, no bras. You get to wear those hospital gowns (same if you're getting an all over Xray) which I have yet to figure how to wear with either grace, comfort or decency (happily you get to keep your knickers on!).

A lot of the time finds you lying on those awful tables (someone should invent one like a dentist chair that can be hydraulically lowered and raised) with or without various articles of clothing whilst you are poked and prodded.

Neurology also specialises in some super tests - which if you're in neurology in the first place your probably going to fail. I'd also be in big trouble if I was in America and pulled over on suspicion of DUI as they seem to be the same tests! Some of these are really hard even if your brain doesn't need a neurologist! 

• walk heel to toe in a straight line along the room 
• now do it backwards
• put your feet right together and stand upright
• now do it with you eyes shut
• close your eyes, put your arms out to your sides and touch your nose with both index fingers

Remember, you're not allowed to fall over at any point!

It's not bad, it mostly (except for blood tests or falling over) doesn't hurt. Just sometimes though, when you're lying on a hard couch with stiff paper under you and over you and your trousers folded somewhere on a chair, you have to take a step back (in your head, of course) and laugh.

Sick and broken

So, I started the week with a bit of a cold. I didn't really think much more about it other than it seemed to be having a very negative impact on my energy reserves.

That was Monday. Tuesday I felt worse. I felt dizzy and my cognitive abilities seemed to have vanished. It was like my brain was working in treacle.

Tuesday night was worse. I was up most of the night with a fever... getting that special dozing sleep and strange dreams you only get with a fever. At 1am I figured out there was no way I was going to make work the next day.

Wednesday was alarming. My world appeared to have shrunk to one massive relapse. I rang my MS Nurse... who asked did I have a cold or the flu? Yes, I said. Don't panic - she told me. Once the virus goes away so will the symptoms; this isn't a relapse just a flare up.

Notwithstanding, I  managed to collect pretty much every MS symptom I've ever had. My legs are so weak I can hardly stand (had to be picked up a couple of times yesterday, much crawling going on), my feet are even more numb than than usual (who knew that was possible); my left eye seems to have a bout of ON, my right hand has lost all strength and feeling; oh yes, and there's so itching going on. 

The last thing that my nurse said to me was, if you have a chest infection you must see your Doctor. I noticed in amongst the very annoying cough that my chest was making strange noises like the creaking timbers of an old boat. The doctor was duly called out. He listened to my chest, yes definitely something on my chest and took my temperature; I might not feel so feverish but still not normal. Diagnosis, chest infection (again). So another course of antibiotics.

The good thing is that the downgrading of fever to temperature has already slightly improved the flare up. Some of the strength and feeling has come back to my hand and my eye is better too. Sadly my legs are still pathetic and going to the bathroom (about 12 feet away) is still an undertaking.

I've been taking my paracetamol, drinking lots of fluids and sleeping loads (despite the best efforts of the builders next door). Three day weekend now so hopefully fit for work again on Monday.

A solution?

The last few months I've been struggling to sleep through the night. I had solved the problem of getting to sleep due to cramping muscles by taking Clonazepan which works a treat. Increasingly I was waking up during the night with stiff and painful muscles, which would prevail through the day.

Yesterday I spoke to my MS Nurse and she outlined several solutions - one of which was Gabapentine. I already a huge pack of that previously prescribed so we decided that was a good start. I took a tablet last night along with the Clonazepan. 

This morning I woke up in exactly the same position I fell asleep in, usually a sure fire recipe for locked, stiff cramped muscles... not today though - still a bit of stiffness, but nowhere on the level of the usual pain. As the does gradually increase over the next few weeks I am optimistic that maybe this will help me get the good night's sleep I need.