MS & Work

The unpredictable nature of MS makes it a very hard disease to live with, and a very hard disease to work with. Many people struggle with the decision whether or not to tell their employers. I was diagnosed at my last job (where I didn't tell them) but I told my current employers at my job interview. My previous employers were never told as there was never a time when I had any visible symptoms and MS was in a benign phase. I'm glad that I told my current employers as it would have been a difficult conversation for me to have when I started having more severe relapses that needed mobility aids and time off work.

When I first started having mobility problems it was truly relapsing/remitting and I only occasionally needed to walk with a stick. When asked in passing at meetings I'd just tell the enquirer that I was having some trouble with my legs. The mobility problems progressed to a permanent stick and then to crutches; by now it didn't come up and colleagues and co-workers just accepted the aids as part of the person. 

All my co-workers know that I have MS, some other colleagues from other companies do - if we have known each other long enough and shared enough long train journeys! 

There is more to it than that though. Recently (and not for the first time) a bad relapse put me in bed for a prolonged period. This meant that my job which was just reaching a critical stage had to be passed to somebody else, and for continuity of service stayed with them once I was back at work.

My job as a QS is largely office based; however, when a job goes on site so does the QS (at least once a month often fortnightly). This is where the problem arises... a person on crutches isn't really compatible with a building site - how does on climb scaffolding or even worse ladders?

Luckily my employers are accommodating and understanding. They accept that there are things that I can do and things that I can't do. The problem is that the things that I can't do change. Rather like the frog in the well for me recovering from a relapse is one step forwards and two steps back; I never quite get back to where I started.

Now even going to a meeting a back sets back my day. Walking more than about 20 yards is exhausting. Yes, I could take a taxi - but traffic in London would mean that even more time was taken out of my already stretched day.

Then there are the problems that can't been seen, the 'invisible' symptoms. The dreaded 'cognitive difficulties'. I have extremely poor memory; I deal with this using calendars and note-taking applications that synchronise between my work computer, my phone and my home computer. Worse is the 'brain fog' the moment when you can't find a word, whether it is in the middle of writing a report (annoying and delaying) or a conversation or meeting (embarrassing). There is the difficulty in maintaining concentration. At home this is irritating (especially for the Better-half) but is also a bit of a long running joke. At work it can be insurmountable and it just means that some days are not as productive as they could and should be.

Then there are the problems that people don't like to talk about. Difficulties with bladder or bowels. I have all sorts of bladder problems; exacerbated at work by the fact that the ladies toilets are one floor down. I've had different problems over the years, the current is extremely annoying - I'll not think about going to the toilet all day; but as soon as I do I'll realise I need to, desperately. Wait for the lift or wobble down the stairs - it is a toilet dash. Not too bad in your own office, but worse if you're at a meeting and don't know where the facilities are or out on site where there are only one set of facilities!

I'm lucky though. Everything that MS throws at me I manage to deal with or live with. It means that I can keep working in a job that I enjoy (most days).

Things I have learned from MS

• If you have dexterity issues don't buy blouses or trousers with buttons
• If you have balance issues sit down to put on underwear, trousers, socks and shoes
• If your right hand lacks strength, hold the glass of red wine (cup of coffee, etc.) in your left hand
• Never let go of your crutches on an escalator
• If it is there, always take the lift
• Always know where the toilets are
• Embrace technology and social media; if you are stuck in bed it will keep you sane
• Listen to your body, when it tells you enough then it is time to stop
• When help is offered, accept gracefully and with thanks

Getting back to normal

So, this week I got back to work (at last). My Nurse told me not to... and I never bothered to go and ask the Doctor what he thought; I was going mad stuck in bed.

I was starting gradually anyway... half a day on Monday and half a day on Wednesday. It isn't like I really had to move too much. Walk to car, ride to work, walk to office, sit in chair (get brought coffee), walk to car, ride home, walk to house.

I think it was more tiring working at home on Tuesday and Thursday to be honest... I tried working in bed with the laptop but it didn't work with all the bits of paper so I had to get up and sit at my desk which, using a laptop, isn't ergonomically quite right.

But here we are and it's Friday; and I'm not a total wreck. Tired, yes. Glad the week is over, yes. Feeling better than I have done in a month, yes. I think having something to occupy my mind and feeling useful again really helps in the whole 'feeling better' bit.

The steroids are finished at last too. That means that my insides and sleep patterns will hopefully be returning to normal any day now.

I can't say that I'm 100% recovered. I still can't walk any distance... the Better-half had to push me in the wheelchair to the Doctor's for my flu jab this afternoon. I'm keeping up with all the stretching exercises though so hopefully that will get some muscle-tone back and if nothing else make my arms strong enough to push myself in the wheelchair a bit.

It's been a difficult four weeks but hopefully things are on the up now.

Baby steps

So this is the end of week four in bed. Honestly, I'm fed-up. I feel much better than I did (although not better enough to be up and around all day). Better enough to feel bored. I guess that is progress.

I wanted to go back to work next week but my Nurse said she didn't think that was a good idea. As a compromise I'm going in Monday morning to collect some work that I can do from home.

Have to remember... baby steps. I've been here before and too much too soon sets me back... patience and taking it slow is the key.

I've been doing my exercises (which mostly involve sitting and stretching muscle groups) and making an effort to get up and about at least once during the day.

What remains to be seen is, like the frog in the well, how far I'll climb back up after this relapse. It always seems to be one step up and two steps back so that you never reach where you were before.

As long as I can get back to middle distance mobility on crutches I'll be happy... I don't mind the wheelchair for days out and long journeys... but I'm not quite ready to welcome it as a permanent part of my life yet!

Tell MS Friday (3)

I'd like to tell MS... sometimes I hate you. Because I never know what the day is going to bring. Will it be a good day... no new symptoms; a bad day... strange new symptoms - or just another day where nothing gets worse but nothing gets better either.

Tell MS Friday (2)

I'd like to tell MS... you are a learning experience. I have learnt to understand my body. I have learnt to listen to it, and understand and respond to it's needs. I've learnt to rest when rest is needed.

Tell MS Friday (1)

I'd like to tell MS... thanks. Having a relapse has made me appreciate how much love and support I get from my family and friends. The Better-Half, Mutti, Nearly-Mother-in-Law, Gran and Kitten-cat (to name a few). Couldn't do it without you!

Staying positive

Half-way into the first week of the second course of steroids... it's a bit like a spell... 12 for 7 days, 6 for 7 days, 3 for 7 days, finish.

Happiness is that the rampant insomnia has dialled down to a more manageable level. Happiness is that the stomach upset between the two courses has gone. Happiness is that the Omazeprole taken right means no more sore throat, chest and heartburn. Happiness is that the Gabapentine has done some good for the sensory abnormalities in my hands and feet.

Sadness is that I'm still in bed, I still have dizziness and I still can't walk properly... but one day at a time, eh.

Down in the Dumps

I am feeling like Tennyson's 'Lady of Shalott' today "I am half sick of shadows," said The Lady of Shalott. Although it is amazing how smelly and messy you can get just lying in bed - I am distinctly less Titian and flowing than Tennyson's heroine is generally portrayed!

Since my hospital visit last Wednesday I haven't been out of the house - neither have I had the energy or inclination. Apart from bathroom trips; occasional visits downstairs for food, TV and cat-time - I actually haven't much left the bed.

The five day course of Methylprednisolone steroids have run their course (thank goodness) - so the constant low-grade headache and sore-throat are gone too. I had forgotten that the instant reaction to the end of the course is a monster upset stomach - so that was a nice surprise today. Nice neuropathic burning pain in my hands and lower arms has joined the roster of complaint - lucky I still had some Gabapentin left and the Nurse says it is OK to take it!

Now onto the endless (seemingly) three week tapering course of Prednisolone. Something better start working soon. Right now I still can't walk (lurching and staggering rules!) - this is taking forever to type (but is easier than the row I had with Microsoft's Ease of Access Speech Recognition). The foregoing means I can't go to work - couldn't be worse timing as a colleague has just left and we are short staffed (again)! Add to that the mind numbing boredom - fed up with movies, too tired for Xbox, fed up with reading - used up the internet. I think my brain may begin to stagnate.

Twitter just depresses me as it reminds me that the world is busy doing things whilst I have a patch of sky with a tree to look at. Yes, I am feeling sorry for myself today. 

I am lucky that I have my family; the Better-Half nurses me and waits on me (even though he's got a cold); my Mum calls me every day; and Kitten-cat is doing his best to be my constant companion (even if he is mostly asleep!).

As Buffy sang in the famous musical episode 'Once More with Feeling'... "Where do we go from here?".

Relapse (again)

Last week I saw my Neuro for our annual routine appointment. His final words were "See you in a year, unless, God forbid you have a relapse". Way to tempt fate.

On Sunday a relapse began. I felt like a puppet whose strings had been cut. Every tiny thing took too much energy (it took forever to eat dinner as lifting cutlery to my mouth was exhausting). The Better-half wondered if it was just a reaction to my busy Friday... but funny how you get to know your body when you have MS... and I could tell it was more than that.

So, on Monday I rang my MS Nurse who requested I come and see her (and the Neuro) on Wednesday. You have to get used to a lot of things that once would have seemed undignified  when you have a long term disease, as taking a urine sample with you to the hospital is standard. No toilet trips after 8pm the night before... two pints of water and two cups of tea and my bladder was still extremely (and predictably) un-cooperative.

Unsurprisingly the suggested course of action was steroids. "Do you tolerate steroids?" my Neuro asked, "Yes", I replied, "They just don't usually have any effect". On this basis he gave me a prescription for the two courses mehtlyprednisolone - oh I love your vile blue taste - for five days and then tapering course of prednisolone. I shall rattle again. Already worrying that I'll get a chest infection (which has happened before) as it is sore when I breathe too deeply. Fix one problem, get another.

The Better-half, the medical professionals and I had another conversation about Tysabri - both MS Nurse and Neuro being concerned that unless more aggressive therapies were considered my disability would progress. They were basing this on my visiting in my wheelchair yesterday, but I pointed out this was just because my legs had given out and I was too fatigued to walk to the hospital and it was my intention to not make this a permanent arrangement. They gave us leaflets to take away and the Better-half and I will have some risk/benefit analysis to do over the next weeks before I see the Nurse again.

Sent the Better-half off to the pharmacy whilst I chatted to the Neuro's Tysabri poster-girl. Have to say - she looks good on it. Three and a half years and not a single relapse. She kindly pushed me down to the pharmacy where the Better-half smashed by own waiting record (70 minutes) with a massive 90 minutes.

And so home. Lunch, steroids and peach juice (which is the only thing which begins to combat the taste of the tablets) and then fell to sleep for several hours from the exertion of being pushed around in the chair (yes that is how bad this relapse is).

Had to have a conversation with my boss in the evening about the current situation. I had emailed him every day to let him know what was going on - he was hoping bed rest would have me back on my feet. Had to go into worse case scenarios (steroids and the time they take to work)... bad time to be sick - work is busy; I am hoping maybe when the steroids start to kick in I can at least work from home. Right now that just can't happen as I'm most comfortable lying down trying to use the laptop - unbelievably slow as I keep stopping for rests. This post has taken half an hour!

Not even the MS this time...

Yesterday I had a pain in my lower abdomen. I've had it before and been intensively investigated including an intrusive ultrasound - not like the sort you have when you're pregnant. They never found what the problem was because tests take so long to organise it had always gone away again by the time the test came round.

Today the pain was still there - and much sharper than normal. The thing that worried me was that it was located just about where NHS Direct told me my appendix was. My GP surgery (as normal) couldn't give me an appointment until 12pm (how is that possible when their phone lines were down?!). Off I went to A&E.

I am a regular visitor to the Queen Elizabeth Hospital as an outpatient but I'd never been to A&E before. A long (long) walk down the side - almost back to Cemetery Lane where I'd come from!

It seemed quiet, not at all as jammed as I expected. I gave my details at the desk... solved the mystery of the wheelchair delivery people not being able to contact me (the hospital had a very old mobile number)... and took a seat. I had my Kindle as whenever I've visited Eye Casualty Units I've been there for hours. Not very long later the PA system asked me to go to the mobile unit outside the entrance. 

Delightful bright, airy (and above all clean smelling) portakabins. Now I did settle down and waited quite a while. I eventually saw the doctor with his amazing gadgets (he pointed a laser at my head for my temperature and took my blood pressure with a tiny little finger cap). Prodded and poked. Not appendicitis, but if it got worse or I developed a fever (etc) then come back. Strange thing - as I was leaving I apologised for wasting his time (was feeling a bit guilty for my over-reaction) but said I hadn't been able to get an appointment to see my doctor. You did, he told me, just not at the surgery. I thought I recognised him!! I congratulated him on his excellent memory, he told me it was the unusual name.

I kept the Doctor's appointment as I was now wondering if it was some sort of infection. The GP did some more poking and prodding and agreed that it wasn't appendicitis. Then he asked for a urine sample. Whenever this happens my bladder goes on strike - so he told me to bring one back later.

Two cans of coke, a pint of fruit juice and three pints of water later I eventually did. No infection I was told. Take paracetamol if it helps and rest. So I am.

Wheelchair debut

The wheelchair and I had our first outing yesterday. Mum and I went to Bluewater. Apart from the occasional inconvenience of being effectively the height of a small child I managed well. Mum gave me some pushes when we were in the malls and I pushed myself in the shops. I'm particularly proud of my turns!

The best thing though - usually a shopping trip like that would have left me wrecked... but today I still have spoons!

Disapointment

It was my regularly scheduled appointment with the MS Nurse today. I had high expectations though. Last month I'd gone for a specific blood test and an MRI.

The hope was to start taking Tysabri which is supposed to be about 40% more effective than the Interferons at preventing and alleviating relapses. My reservation at had always been the risk that goes with Tysabri of PML (a brain disease) - although recent wisdom is that there is only a 20% chance it can kill you, if contracted, it could still leave you more disabled than when you started. The positive news that had started the round of tests is that recent research had determined that if you had not been exposed to the JC Virus in earlier life you can take Tysabri with no risk. So I had the blood test (and an MRI).

The bad news was that my test results were positive for the JC Virus; which meant that I didn't want to to continue with the Tysabri route. I had all but convinced myself that the test would come back negative - so I shed a little tear on my way home. There was further bad news in that the MRI showed 'a few' more lesions than the last I had done back in 2002. Happily my Nurse's computer doesn't have the software to show the scans so I wasn't forced to sit and look at slices of my brain as my Neuro made me do last time, gross!

All in all a bit depressing. For an awful long time my MS was mostly 'benign' (yes, I know, I was lucky!) and the relapses I had weren't too troublesome - a little numbness here and there or an attack of Optic Neuritis. It was only the two really bad ones that lasted about six weeks with the vertigo and total lack of strength in my legs that finally got me through denial and convinced me that I really did have MS; up until that point I still though it was one big mistake!

The problem is now that every relapse comes and goes - but like the frog in the well I go two steps up and one step back; nothing ever quite gets better.

There is another hope in Fingolimod - it has been approved in Europe and is currently going through the NICE process. The problem for the drug, it would seem, is that is costs almost twice as much as I remember being told that the injections cost. More effective than the injections although less effective than the infusion it does provide hope.

Wheel-chair arrives

The wheel-chair arrived on Friday. So far I've sat in it in the living room and that is about it as I was under house arrest this weekend getting some rest.

It is alarmingly large and doesn't fold up nearly as much as I'd hoped. I'm somewhat doubtful about my original plan of keeping it in the boot of the car.

It will be a good thing though. Every time I'm going somewhere that needs a lot of walking input I don't have to think about it any more.

In  good news, the Optic Neuritis seems to have gradually got better and without me realising it has now gone. Standard six weeks with attempted (failed) steroid intervention.

My prescription ran out this week. My doctor's surgery decided (again) to ignore the stamp addressed envelope I enclosed with the repeat request. This meant that the muscle relaxant tablets that help me sleep through my legs at night ran out and I had a few bad nights sleep. The worst being the one where I got about three hours... and still had to get up and go to work in the morning. The prescription has now been filled and all is well at bed time again!

Steroids nearly run their course

First I had the horrible 5 day course of the blue steroids... the ones that taste vile. That made no difference. Then I had the three week tapering course (which will finish on Wednesday). The little red pills... twelve for seven days, six for seven days and three for seven days. An impossibly large amount of tablets for the pharmacy to count out!

Nothing is fixed. I still have ON in my right eye. It is still annoying as it makes it hard to use the computer (amongst other things) and gets worse when I do anything or move my eye too far in any direction.

These are two pictures which attempt to illustrate the effect of ON on my vision. Left is normal and right is disturbed.

My feet still don't have any feeling in most of them - and my toe muscles have taken a permanent vacation. I just bought some 'spa' type-thing made out of soft rubber - like a fancy thing that you put between your toes when you paint your nails - but it goes all the way round so straightens the toes a bit. Hopefully it might make some improvement.

The bad toes and balance means that I keep tripping over myself. I don't notice most of it as I haven't got much feeling in my legs. I have to be like a leper and keep checking for cuts and grazes! That one really hurts as it is a bruise as well as a cut. Ouch. You can see all the scabs and scars - it is always my right foot that trips up my left foot!

The last complaint is my right hand. It has got better since it was at its worst - but it isn't cured. Again the muscles just aren't working properly. Of course, I'm right handed... so it makes it hard to write and also (as a touch typist) hard to type. It makes it hard to do a dozen other things too - buttons, earrings, tying back my hair... no manual dexterity is very irritating! Not only no strength, but not much feeling - I feel like I'm wearing a glove all the time!

Right. Complaining over. On the plus side I've been keeping up my 'do anywhere' exercises and I think it has been helping my legs. On the further plus side - the wheelchair (for long journeys and things) should also be arriving soon.

Here we go again

The five day course of steroids has made no difference to my ON. Off we go on the tapering course then... 147 tablets (and the rest) over the next three weeks. Fingers crossed!

Limitations

It seems that my limitations are more limited than I previously thought. I had a busy weekend... on Friday I was at St Paul's Cathedral; on Saturday I had to take the car to get its MOT (which I had forgotten about and the garage rang to remind me); on Sunday it was off to see my Mum for Mother's Day (lucky my brother was driving). No rest at all really.

And last night and today I suffered. I woke at 3am feverish... drenched in sweat but freezing cold. I asked Rich to get me a hot water bottle, at which moment he pointed out that I probably wasn't fit for work. As my hands were also in agonising pain I couldn't see how I would hold the crutches and was forced to agree with him. I went back to sleep with my hot water bottle... and didn't wake again until nearly lunchtime. I dozed for most of the rest of the day until about 3 or 4 when I realised that I felt much better. I was no longer feverish and my hands were a bit better (although still rather claw like).

The Law of Spoons must be observed. Out of the three days that form my weekend if two of them are to be filled with activity one of them must be filled with sleep and bed-rest... otherwise disaster and flare-ups of old symptoms will follow. As the meercats would say "Simples".

A new one

This time the eye problem isn't Optic Neuritis but rather Retro-bulbaric Neuritis which is a very specific form. That's the science bit... I was lost there. It means that instead of the usual visual disturbance with no pain I have a lot of pain with no visual disturbance.


It took an afternoon at A&E at Moorfields Eye Hospital to establish this. I'm not exaggerating. I was there for over four hours!


I'm off to bed now to take a cocktail of drugs which I suspect will knock me out until morning. I'm hoping they'll stop me waking up in pain when I move my eye in my sleep at any rate.

ON and other things

My suspicions a few weeks ago that I was getting another dose of ON seem to have been bang on. This time I don't have so much visual disturbance (which is useful) but I have terrible pain behind my right eye. Most of the time it is actually only a dull ache - unless of course I move my eye at all. You wouldn't believe how much you move your eyes in a day.

There isn't much to be done I suppose. It is probably too soon since the last dose of steroids to take another course - just have to hope that it is a short attack.

In addition the car broke down yesterday and I had to schlep around Charlton and the Greenwich Peninsula. No spoons left today, so have taken to my bed. Really disappointing as I had big plans for this weekend.

Not much improvement

So I took the week long course of steroids, complete with peach juice antidote. I can't say that I have noticed much improvement in terms of either fatigue or muscle control in my legs or balance. 

The whole situation was messed up a bit though; I finished the course of steroids on a Wednesday. On the Thursday I got food poisoning, followed by a stomach bug which laid me out for the whole weekend. The only positive was that I did lose half a stone through the whole sorry affair.

The Access to Work has been a blessing. I have no idea how I'd have managed without it. I've had to go to a couple of meeting during the day in the last few weeks which means taking the tube and that has been pretty exhausting.

It is annoying that Amantadine stopped working for me and that Modafinil has such a detrimental effect on my sleep patterns that there is no point taking it. I am having a massive problem finding enough energy to get through the day at the moment... lucky, I suppose, that my job is keeping me at my desk pretty much all the time now and I don't have to go out much for site visits or meetings.

Here's my current paradox. I cannot feel my feet at all, certainly not the soles of my feet. However, when I got out of my nice hot bath they were itching to the extent that I had to smother them in E45 anti-itch cream. How can they itch if I can't feel them?!

New reality

Last weekend I got a bit carried away with myself. I forgot the rule of spoons. The taxi journeys to and from work have revolutionised my life. I have so much more focus and energy. 

So... on Friday my Mum came to visit and we went out to lunch and went shopping and I introduced her to the kittens. That was quite a lot of spoons used up.

On Saturday I made my annual pilgrimage to the Valley. Mistake 1) as I was sitting in regular seats I only took one crutch as I was worried about room and also about standing around drinking beer before the game with no hands. I realised halfway down to the ground that this was going to be tough. That was going downhill. It was confirmed at the ground that my legs were pretty much giving up. I sat through the whole game only standing to applaud the new manager and the goals. Going home was horrendous. I realised about 10 feet from the ground I really couldn't make it. Rich pretty much had to drag me home. It took forever and a day - certainly a lot longer than it takes him on his own!

I spoke to my Nurse in the week and agreed that even though I'd vetoed the idea at our appointment the previous week maybe a course of steroids would be a good idea after all. So, here's me and another course of Medrone (thank goodness peach juice, the only cure for the vile taste of the vile tablets came in the shopping today). During the same conversation my Nurse suggested that a wheelchair might be in order... she started the sentence with "I know you won't like the idea..." - but after my experiences of the weekend I took no convincing. So wheels have been put in motion as it were (pun not intended) and in a few months I should have my own wheels.

Part of me hates the idea. I've always resisted anything that takes away my independence or gives obvious sign of my disability. This has always been a mistake. I should have agreed to nearly everything from DMDs to Access for Work a long time before I did. So, this time I am putting my pride in my pocket and gratefully accepting the help offered.

Routine Nurse appointment

Today was my six monthly check up with the MS Nurse. I had to walk through a monsoon to get to the hospital after four buses left without me. I remarked that Area E was like Piccadilly Circus... it had been like the Marie Celeste earlier I was told. Apparently the weather must have kept a lot of people home first thing. 

My appointment was on time (unusual) and I managed to defer the blood tests until Friday... at which point I can go first thing and hopefully avoid the queues. We discussed my current symptoms and probable relapse and the Nurse agreed with me that it was probably down to the stress around my Dad dying and the terrible cold over Christmas. 

I declined a course of steroids on the condition that I go back to her in four weeks if I see no improvement.

Relapse Indicator

I have two rules about baths - first they should be deep and second they should be hot. As hot as you can manage - hot enough to turn your skin scarlet.

This also is an invaluable relapse indicator, as I am one of those people whose symptoms are exacerbated by the heat. The stressful time before Christmas when my Dad died coupled with the dreadful cold I had over Christmas were prime relapse triggers. I have been suspecting for some time as my feet and hands have got more numb (they were almost better too). Unfortunate by product of numb feet more falling over and more bruises... hence desire for long hot arnica filled bath. Sadly after five minutes it became apparent I also have a dose of ON in my left eye as the vision had dulled to the extent that I could hardly see out of it. Ten minutes in the cold of the pink room and the landing everything has calmed a little. The itching on hands and feet has stopped (how can they itch when they are numb?) and the eye is back to only dimming the colour red. Happily I am seeing my Nurse a week Monday so we can discuss it all then.

Talking of baths, I also have two preferences (they cannot be classed as rules) in respect of bathing - first baths should be lengthy (my preference is for wrinkly skin and the water turning cold) and second they should be cat free. Tinker's fascination with water makes this hard, if he's locked out he'll scratch at the door and pull up the carpet and if he isn't locked out he'll let himself in and try to join you in the bath. Length is curtailed by the unpleasant relapsing effect on my symptoms.

I'm a Spoonie

Jodi shared this on her blog ages ago and I starred it in Google Reader to pass on and then forgot about it (as I'm inclined to do unless I write myself a note!). It explains what it is like to live with a chronic and debilitating disease, but most importantly also one that is often invisible.

The Spoon Theory written by Christine Miserandino