Tuesday, 27 November 2012

Another relapse

Relapses suck. My particular brand are very trying. The worst ones afflict me simultaneously with extreme vertigo and upper and lower limb weakness. This means that until trial and error find the drug (if there is one) that will abate the vertigo being upright is downright unpleasant (and has on occasion led to vomiting). The limb weakness means that I can't walk anywhere (helped since the first such attack by the addition of the wheelchair and wheelie-walker to my life), I can't really use my arms (so thankful for Kindle and iThings; I mostly watch TV and sleep.

The net effect of this is, I certainly get enough rest (I vie with the cat for who sleeps the most). The less useful side effect is that I slowly stultify with boredom.

Since my first bed-bound relapse five years ago I now have additional worries. I only work part-time, so I don't make as much, and our contracts now cut our wages in half after 0sick days in the year. Every day stuck in bed is money down the drain... And due to the reasons above I get a lot of time to dwell on it!

Staying positive, the drug they gave me for the vertigo works (first choice lucky) and I am feeling better than I did two and a half weeks ago.

It hasn't helped that during the same time I also had to have surgery on both toes and two fillings. At least that is all out of the way... hopefully the enforced bed-rest is helping my toes heal quicker.

Sunday, 23 September 2012

Cooking with gas!

Last week I bought a 'perching stool' for the kitchen. This is why disabled people need the Disabled Living Allowance. These things aren't cheap. What it means though is that I can cook again.

Not being able to stand long unsupported means you can't stand at a worktop or a hob to chop or cook. You can't stand at a sink to wash. I had a wooden stool but it was too high, and because it had no back I was never sure if I was safely on the stool or about to fall off.

Can cats use it too, eggs up there!
Folds away for small kitchens
In action
Just the right solution
Me - cooking again
Curry for dinner
Sadly the much anticipated bath-stool, despite careful measurement, is too big for the bath and will have to go back. I will not be defeated. All the kitchen standing problems apply double for the shower... and because of stupid stud wall no rails can go in the bath / shower.

Tuesday, 11 September 2012

More steroids... and a rant

As usual the 5 day intensive course of the evil blue tablets did little other than give me chronic insomnia, put me in a foul mood, make everything taste bad and make me smell. Thanks to the Better-Half for suffering me.

Today we move to the endless three week tapering course. Not so bad tasting and not so insomnia provoking my GP assures me... although may lead to excessive euphoria.

I am now taking so many tablets I had to buy a new organiser! This morning there will be 18 (5 types), at lunch 4 (2 types), in the afternoon just 1, and at bed time another 5 (3 types). That is 26 tablets of 7 varieties... shake me, I rattle.

I'm hopeful as I write this that this us the end of insomnia. I'm hopeful the steroids are working on bits I didn't know were wrong, so even if I don't notice an improvement there is one. I'm hopeful that no bad effect will come from the Avonex suspension. I'm hopeful this is the longest relapse ever and remission is just around the corner.

If not I have been inspired by the Paralympians and my many Twitter friends - and I will redouble my armchair activist efforts to help those who are struggling (with me) to make our voices heard.

Friday, 7 September 2012

My MS Week

This Wednesday I went to see my Neuro. Generally these days this happens once a year, so I hadn't seen him (apart from passing in corridors) for a year. It was a warm sunny day, and I was almost late, lucky he was running late too. The heat and the extra sitting down meant when I was called I need help to get out of the chair and shuffle into his office. 

His first question 'How long have you been like this'. To be honest, I wasn't sure. To me it has been a slow decline. When he asked if I had been treated with steroids I told him as much; apart from my left hand suddenly joining my right hand in numbness and my on-off love/hate relationship with bladder and bowels the walking as been a slow descent into Ataxia hell. That and the numb/pain thing (oddly called anaesthesia dolorosa). 

His immediate (and predictable) reaction was to suggest Tysabri or Fingolymod. Old and tired conversations. I refuse to take these drugs until they have a little more history behind them and a better safety record.

His next concern was that my course of relapsing/remitting MS has moved to a course of secondary progressive MS. Despite the slow relapse free decline that wasn't a thought that had really crossed my mind. It is hard to tell if this is what has happened. First course of action, suspending the Avonex. I guess we find out if it was actually working or not. Next course of action, a course of one week (horrid blue) steroids. If nothing happens then I get a three week tapering course. If no improvement occurs this leads to the possibility that we have moved to secondary progressive. It's all a bit up in the air, it's all a bit 'we don't know'.

I sat in the corridor and waited for the buggy to go to the pharmacy. Wept a little weep and then looked up the Secondary Progressive course and found out that it might not be as bad as all that.

And an online friend gave me the following excellent words:
People with MS can live in fear of the word ‘progression’. Being told they have SPMS can be just as big a shock as the initial diagnosis of MS was.

They can feel they have a completely new disease, and it’s no longer treatable. It can feel like the end of the world for some.

But in reality, this is not the case. As a nurse, I reassure them that SPMS is just a name for one pattern of the disease – it doesn’t change the fact that their symptoms will still be treated and it doesn’t signal a sudden onset of disabling symptoms. They’ve still got the same disease, but perhaps very slowly changing.

Of course people need to know what type of MS they have, but we need to tell them in a way that’s not just clinical but takes account of their fears and concerns.
In the afternoon I had physio. This was better. We looked for a leg brace to help keep my left toe up so I stop tripping. I also am getting new crutches with easier to hold handles which will help me with my numb and painful hands.

Friday, 3 August 2012

Fatigue, my nemesis

Many people with auto-immune diseases (such as MS) suffer at one time or another from fatigue. This is not I'm a bit tired and need a nap, this is (like a car running out of fuel) I'm going to break down and stop - no matter where I am or what I am doing.

Recently the fatigue has been crippling me. I was (before my annual leave) back in the Monday to Thursday go to work, come home, eat, sleep and rest in bed all weekend routine. Life was passing me by and it was getting to me (big time).

I rang my MS Nurse to ask about fatigue meds. I'd tried Amantadine earlier in the year with no effect. I wondered if I could try Modafinil again. I'd take it before but it was so effective that it kept me up at night. Now I take so many meds at night that make me sleepy I wondered if it might 'trade-off'.

The nurse wrote to the doctor who wrote a prescription as I'd had it before. Collected from the pharmacy and first dose taken.

Last night I was exhausted when I got home, I had plans that involved doing nothing today. Right now I feel that I might actually have energy. If my body worked I think I could do stuff. Sadly my legs are still stiff and inclined to give out, I still have no balance, my hands are still numb and it took me a minute to come up with the word routine in the paragraph above!

Day one so a long way to go... first hurdle will I be able to sleep tonight?

Incidentally the possible side effects read (largely) like a list of MS symptoms!

No Go Britain?

Yesterday I made a rare trip into London by tube. There was a lot of discussion in the run up to the Olympics about accessibility issues in London. I had some issues last night but some of these were caused by the Games themselves. In other areas steps seem to have been taken. Are these permanent or just making London look good for its visitors?!

Before I left yesterday I decided that given the likely crowds and my destination (a bar) that much as I wanted the wheelie-walker I'd better make do with the crutches.

Getting bathed and dressed had already used up a good part of my spoon store so rather than get a bus to North Greenwich station I'd call a cab. Not £7 well spent. North Greenwich and The O2 (or North Greenwich Arena as the Olympics call it) has been over-run. LOCOG you owe me that can fare!

The first problem is that unless you are a bus you can't get near the station. My driver made sterling efforts, but despite this the nearest we could get was a car park nowhere near the station. I then had the equivalent walk (and a bit more) that I hadn't taken to the bus stop back to the station. Legs on the way to giving out.

At the station I discovered that horror of horrors the cab rank I had earmarked for my journey home had been turned into some VIP drop-off. The cabs were, it would seem, somewhere back where I had just come from. Cue muttering and more muttering from me.

I navigated successfully to the platform via two lifts and happily a terminating train was about to head back out. That guaranteed me a seat at least.

At London Bridge I headed to the lift at the far end of the platform. Just to demonstrate how accessible the tube is there were stickers on various doors advising where to get on for level access at stations like Green Park (train above platform) and Wembley Park (train below platform). Are these permanent aids to get on and off the trains or just for the Games? If permanent then perhaps keep the signs? We are SO accessible for the Olympics, but other times - well the wheelchair and I have personally suffered "how to get out?" at Wembley Park.

I had reached ticket hall level. Chaos of people everywhere. The exit I wanted was marked 'no entry' and I was being directed off on a route march. My legs were again about to give out and I was desperate to sit down. I asked the guard if I could please come through the short route. For once red-tape lost and he let me through (sometimes I think they can tell you might make a scene, or even worse cry!).

I stopped for a re-charge and an iced latte in The Vaults. Next stop main concourse level. The lift is out of commission (due to the ongoing refurbishment) so I used the escalators. I presume there was a contingency plan if I had been with one of my wheeled aids?

London Bridge is halfway through its Shard related regeneration. This means there are hardly any benches - no good for the infirm who need regular rest breaks. I had lost where I was to meet my friend in the station redesign but eventually navigated many barriers and found the old bit and platforms 1-6. The usual exit was shut. Have they put in lifts at the middle platform exit otherwise anyone with mobility issues is in trouble as the footbridge didn't have them when I was there six months ago.

We had a great evening out. At the end one friend went off to the mainline trains and my other friend and I headed back to the tube. The lift at the Borough entrance takes you to
the Northern line. We realised just in time!

The tube was, predictably, busy. By some fluke my pregnant friend and I both got seats. Back to North Greenwich. I had decided against the route march to the distant cab rank, opting for a bus. Of course my choice is limited now as one of the buses I use is on diversion. Correct bus boarded, and a kind lady offered me her seat.

Home, exhausted.

The attempts to make the Olympics easy to navigate and accessible mean that regular travellers may find extended journeys that are less accessible than usual. I hope that they take away some of the lessons though which would improve the tube which to me is mostly a 'no go'.

Friday, 13 July 2012

Me and my... bladder!

This afternoon bought a visit to the Continence Clinic, along with the bladder diary I kept last weekend. Bladder difficulties (and infections) are fairly common-place in MS, so the only surprise is that it has taken me this long to get there!

The two nurses were lovely, and put me right at my ease - let's face it, nobody likes talking about their bladder and bowel movements! We went over my diary and I was complimented (?) on my bladder capacity - whatever the problems are, it isn't a small bladder. Did I need to go now, I was asked. A bit I responded. So they did an ultrasound of my bladder. Empty. Mixed messages getting to my brain it would appear, plus ca change.

I was sent away with an appointment for three months time, a list of drinks that are 'bladder friendly' and those that are not, an instruction to resume my pelvic floor exercises and a recommendation to set the timer on my phone for three hourly intervals to ensure regular toilet trips. We're not in Kansas anymore Toto!

Saturday, 7 July 2012

MS experiences this month

Everyone's experience with MS is unique. That being said, there are a lot of problems that many patients do have in common. Some of these have been right up there in my trials and tribulations list these last few weeks.

1) Fatigue. Read Christine Miserandino's 'Spoon Theory' if you haven't already. I have become increasingly aware of my limitations the last month or so. The lift at work breaks down and so I have to take the stairs; I need a cash-point on a site visit and have to walk to civilisation and back; I go shopping with a friend and my crutches only to find that Shopmobility are fresh out of wheelchairs. These things lay me out. Sometimes I am ready to crawl on my hands and knees as my legs (even with the crutches) can't cope. I never go out on a Friday without the wheelie-walker as I know I'll need to sit down every 20 feet. And when fatigue hits that is it, you're done; benched for the game. Resting provides a temporary respite but ultimately there is nothing you can do but struggle on until you can lie down and give in.

2) Brain Fog. You're in the middle of writing (or even worse talking) and the word is gone. Not 'tip-of-my-tongue' but gone. You can work around it (play verbal charades) or give up and change direction, and if you're writing come back to it later. The phrase 'umm' is looming large in my vocabulary these days. That is the tip of the iceberg. I forget entire conversations. I know they happened, I just can't remember what was said (so, so bad when it happens with your boss). Then there are the times when everything just takes longer - it is like stirring treacle; often I get fed up and give up... although again, not an option at work, just have to plough on.

3) Sensory abnormalities. I've lived with these nearly as long as I've had MS. My feet are so numb I can only tell if I'm wearing socks by looking (great for the cat who likes to bite and scratch feet) this extends most of the way up my legs. At the same time, oddly, the slightest touch (furniture, water in the shower) is agonising pain - even though I CAN'T FEEL! The same is true for my hands - small and intricate tasks (even typing) are a total chore; try going about life with a pair of rubber gloves on and you'll get the picture.

4) The uncomfortable (even taboo) subject of bladders and bowels. Whether hesitancy or urgency there seems to be some sort of problem. Not knowing that you need to go until it is too late, needing to go but the body refusing to co-operate. I've now been referred to a 'continence clinic' which means I'm keeping the strangest diary ever (and I've kept a few) of what goes in and out of my bladder. Yes, I have to pee into a measuring jug.

I share these things because I have found the biggest comfort with the peculiarities of MS is to know that you are not alone... no matter how strange, odd, or embarrassing - odds are someone, somewhere is going through just the same thing or has been there before.

I'll leave you with one of my favourite quotes from TV's "The West Wing" (if you've heard it before, bear with me):
This guy's walkin' down a street when he falls in a hole. The walls are so steep he can't get out. A doctor passes by and the guy shouts up, "Hey you! Can you help me out?" The doctor writes a prescription, throws it down in the hole, and moves on. Then a priest comes along and the guy shouts up, "Father, I'm down in this hole; can you help me out?" The priest writes out a prayer, throws it down in the hole and moves on. Then a friend walks by. "Hey, Joe, it's me. Can ya help me out?" And the friend jumps in the hole. Our guy says, "Are ya stupid? Now we're both down here." The friend says, "Yeah, but I've been down here before and I know the way out".

Saturday, 9 June 2012

Taking Avonex...

On Friday I take my Avonex shot. It usually goes something like this; eat dinner, take shot, have cup of tea and biscuit, go to bed, take paracetamol, go to sleep. This means that I very rarely experience any real side effects.

What with an unscheduled afternoon nap and all the football the day of the week kept slipping my mind yesterday. I took the shot late, and due to the nap in the afternoon stayed up watching TV. Big mistake, huge.

When we decided to call it a night my entire body was aching, painful and stiff. The only good thing about getting up the stairs was getting to bed. I was then too cold so had to put my dressing gown on, about an hour later I woke up feverish and had to take the dressing gown off again and turn the fan on. An hour after that I was cold again and woke up to turn the fan back off.

Lesson learned. Shot, tea, paracetamol, bed. Banging and noisy birds have woken me up early and I'm now suffering an Avonex hang-over, the last vestiges of the side-efffects.

Saturday, 19 May 2012

Another day, another week

Warning - grumpy whingeing ahead!

It is too hot. That is not making me feel good. I have put the fan on, but due to the pain in my hips and legs I've actually had to get out of the bed and sit at my desk (unprecedented on a Saturday) - this means the fan is all the way across the room and the effect is now minimal.

I'm now taking huge doses of Gabapentine which is supposed to help with neuropathic pain. The continued discomfort makes me wonder whether there is a different pathology for the pain.

Those who don't want to know about toilet matters should skip this paragraph! My bowels and bladder are  misbehaving. I've been constipated all week (I know, too much information) which makes we feel bloated and uncomfortable. In addition my bladder now swings between bouts of urgency and episodes of 'not going to go even though you're busting' - again uncomfortable and irritating. Both problems also extremely inconvenient as you can imagine!

All in all I think we can agree that I'm not in the best of health or temper.

I have also discovered a recent inability to drink even the smallest amounts of alcohol without becoming disproportionately unable to maintain any semblance of balance (even with crutches or the wheelie-walker). I'm pretty certain that it must be a reaction to the meds as it seems to have coincided with the increase of the Gabapentine dose.

On the positive side wheels are in motion to put in place a formal exercise regimen which should increase my strength and stamina (I hope) and help me lose some weight (again I hope). I have also been to see the New Patient Podiatary Clinic and been referred for a full appointment so there may be hope for my poor useless, numb feet - if nothing else, I got a professional toe-nail clipping!

The other good thing is we have a new shower head. It is the size of a small plate and and we will keep it lime-scale free. This means that I can sit in the bottom of the bath and shower (standing and shower has long been impossible) and hot (even warm) baths were bringing on good old Uhthoff's Phenomenon and leaving me a wilted wreck barely able to get out of the bath and get dressed again. I can now sit and take a nice tepid shower and get on with my day - thanks Thames Water (shower head saves 30l of water per shower).

So that's me. Grumpy, aching and too hot. Roll on summer, things can only get better - right?!

Friday, 4 May 2012

MS Awareness

This week is MS Awareness week. I have been playing my small part re-posting articles on Facebook and Twitter so that more people will have awareness.

What I didn't realise, until I was sorting through a box of old appointment diaries is that earlier this week I 'celebrated' 10 years since my MS diagnosis (on Tuesday). A whole decade. It really doesn't seem that long. I suppose one reason is that I was lucky and for half that time my symptoms were quite mild and relapses few and far between. It's only been the last five years that I've had more relapses, the relapses have been more severe, and I've become physically less able.

It's taken half a decade to accept the reality, and to come to view myself as a disabled person.

There are a lot times (most of the time really) when I hate MS. The week has taken it out of me (as it so often does)... last night I went to bed at half past eight because I felt so rubbish, today I'm mostly languishing in bed with Classic FM and my laptop. Tonight I have to take my weekly shot of Avonex, although this is now faster and easier with the new pen there is still the risk that the side effects will 'hang over' into Saturday.

However, I've met some great people on-line through having MS. Some of them have MS and some of them have other disabling auto-immune diseases. There is this whole massive community of people who blog and hang out on twitter providing support out there; lively and interesting, varied and diverse - and if not for MS I'd probably never have met any of them.

It isn't much to take away, but every cloud, no matter how dark, does have a silver lining.

Monday, 23 April 2012

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.

Thursday, 5 April 2012

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.

Thursday, 1 March 2012

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:

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.

Monday, 27 February 2012

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.

Friday, 24 February 2012

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.

Thursday, 23 February 2012

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.

Wednesday, 1 February 2012

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.

Sunday, 22 January 2012

More things I've learned from MS

  • The trouser/knicker shuffle... lifting ball then heel of foot to put clothes on whilst standing up
  • Don't lean over standing up if you have balance issues, you may topple head first
  • If you're going down the stairs holding both rails and stumble let go, otherwise you'll hurt your shoulders
  • Leave extra time - little things take longer
  • Little things are legion... putting on jewellery, putting in contacts, doing your hair, doing your make up
  • If your memory is poor make lists... you don't want to leave the house without your trousers on!
  • Exercise - keep yourself in good shape, even if it is only stretching and moving your joints
  • If you're inclined to stiffness set reminders to get up during the day and change position