Rare Disease Day 2014

Today, 28th February 2014, is Rare Disease Day.

There are over 6,000 rare diseases and these effect 1 in 20 of the population.  That's 3,500,000 people here in the UK.

Very often there is no treatment for these conditions, and sadly little or no research into developing a cure or an effective treatment.

Most of the conditions are chronic and debilitating, and people with them live lives which are hugely impacted by the effects of these conditions.  (See my blog 21st September 2013 for an account of a "normal" day in my life.)

I have Dermatomyositis and Inclusion Body Myositis, both of which are rare diseases.  I was diagnosed with these in 1983 and 2000 respectively.  In addition to these, and as a consequence of them and the medication I am required to take, I also have:

Raynauds Phenomenon

Limited Cutaneous Systemic Sclerosis Overlap

Steroid Induced Diabetes

Pulmonary Fibrosis (NSIP Stable)

Hypertension

(Acute on) Chronic Lipodermatosclerosis

Lymphoedemarosis

Since 2008, I have been unable to stand or walk, and am now in a wheelchair full-time.  Prior to this I had great difficulty walking and had to use a walking stick, but could only walk very short distances, due to the weakness in my legs.

I use a BiPap machine, which helps me breath properly at night, so that I can maintain the proper levels of oxygen in my blood, and circulate this round the body.

Doing everyday tasks is always a struggle, due to the weakness in my arms, legs, shoulders and torso.  This means that doing even basic tasks, like making a cup of tea, can tire me out, and I have a constant struggle with fatigue.

I have carers who come to me three times a day to help me with tasks that most people wouldn't think twice about doing.  Without there help my life would be impossible.

I am supported at home by my mother - who is 82 - who does so very much for me.  Words cannot express how grateful I am for her help.

And yet despite all this, people look at me and say how well I look.  I have even had a doctor ask me why I'm in a wheelchair as I don't look ill.

Diseases, whether they are rare or not, aren't always obvious to a person looking in from the outside.  Likewise, a disability isn't always obvious, and just because I'm in a wheelchair people shouldn't jump to conclusions.

It isn't always obvious who has a rare disease.  Very often people try to hide it, to avoid having to explain a condition nobody else has heard of or understands.  Sometimes they will hide it, as people don't want to hear about them being ill, and for fear of being shunned by friends, and socially excluded.

Next time you're in a crowd, or with a group, try and see if you can spot who has the rare disease. 

A sightseeing trip to hospital.

Last Wednesday was time for my regular 6 weekly infusion of Methylprednisolone at the Royal Free Hospital in Hampstead, London.

My carer, Marta, came just before 6.00 am to get me up, toileted, showered and dressed, ready to be picked up.  Marta is a new carer and has only been coming for a couple of weeks.  She is Polish, but has been in the UK for sometime. She is very hard working, and has picked up what to do very quickly. 

After taking my tablets and having a quick breakfast, the ambulance arrives, and once I have been strapped in we are on our way about 6.50 am.

With all the flooding locally in South Croydon, Purley and Kenley, I am expecting the traffic to be bad, but we actually sail through without any hold ups.  From Croydon we travel by the usual route through Thornton Heath, Norbury, Streatham and Brixton, again with very little hold up.

We cross the river Thames over Vauxhall Bridge, passed the MI6 Building.  When we get over the river, we turn right into Millbank and drive along the river to the Houses of Parliament.  We go round Parliament Square, and the statues of past Prime Ministers, and then onto Parliament Street.  This takes us passed Downing Street, the Cenotaph and the back of Horse Guards, and then up to Trafalgar Square. 



We go round the roundabout and up the right hand side of the square, and follow the road passed Leicester Square and up to the Tottenham Court Road.  This route would usually be full of slow moving traffic but we manage to get through without any hold ups, so its a nice sightseeing diversion.

From there we head up to and through Camden, as the market is opening, and then up the hill to the hospital.  We arrive about 8.10 am, which is some sort of record.

Usually I'd have to dash to the toilet, after having sat in the ambulance so long, but we've been so quick I can go up to the ward, and book in, and then find a toilet.

Because I am so early the nurses are only just coming on duty, so they help me take my coat off, then make me a cup of tea - yes, I a being spoilt - and the go for their morning staff meeting.

Whilst I'm waiting for them to finish, Jacqui from the cannulation team, comes and puts a cannula in my left arm.  I've known Jacqui for years, and despite me having terrible veins, she is the only person I can confidently say will get the needle in first time.  Jacqui always calls me Anthony.  I'm not sure why, or how it started but its stuck and doesn't feel right if she now uses my real name.

When it gets to 9.00 am, I ring my respiratory physio to let her know I have arrived and to see when she will come and see me.

Just after 10.00, my drugs are ready and I am started off.  I have a 250mg bag of Methylprednisolone, which takes 1 hour to run through.  The line is then flushed with saline, but this is only about 10 minutes, so its not too long before I have finished.

It was then a case of waiting, reading my book, before the respiratory physio turns up.  She arrives just after midday.

I have known Christine for about 10 years.  Issues with my breathing had previously been dealt with at the Royal Brompton Hospital in Chelsea.  Then a new consultant had been recruited at the Royal Free Hospital, and after some discussion, it was thought best if I transferred to Professor Wedziche, and have most of my treatment managed under the same hospital.  As part of the Professor joining the Royal Free, she had brought Christine with her, as one of her team.

Sadly, Christine advised that she is retiring in the next couple of months.  This is a great shame, as not only is she very nice person, but she is really good at her job.  She really goes out of her way to ensure that if I need equipment for my BiPap machine, that she gets this quickly and looks out for the best available options.  She is also very quick at spotting problems and dealing with these.  I have met her replacement, Steve, and he is also nice, but its always a shame to lose someone from your medical team, who you like and trust.

Also, Professor Wedzicha is leaving to return to the Royal Brompton.  She has offered to take me with her as a patient, but I haven't actually needed to see her for the past 6 years, as Christine is so good, so we agree that I'll stay with the respiratory team at the Royal Free, but if there are any problems, the option to transfer is still there.

We chat about a few things for next time, and the Christine is on her way.

I make my appointment for my next visit, and then head off to the transport lounge to wait to be taken home.  After a little over an hour waiting, a driver comes and collects me.

We have to drop two other patients off on the way, local to the hospital, but after that we are off home.  There is much more traffic and this means the journey home takes over 2 hours, but I'm indoors just after 4.00 pm.

It has been a long day but worthwhile, and its always nice to get to see the sights of London.

Mobile phone masts!! - Beware........

In 2000, I moved into a new house.  It was a mid-terraced house, in a quiet cul-de-sac, with a very nice park at the end of the road.

The house was relatively cheap, as it needed some working doing, but this was mainly cosmetic, so I thought I'd be able to do most of the required work.  It had a nice garden, with a very high wall at the end.

A few months before moving in I had been diagnosed with Inclusion Body Myositis (IBM), but I was still physically quite fit, and was able to walk easily, with little problem.  To give you an idea, on the day I moved in, I stripped the wall paper in the front room, because it was so awful.  I can't imagine that now.

Anyway, having settled in I started on the work indoors, getting professional help as and when I needed it.  I needed a bit more help in smartening up the garden, but I still managed most of this, including laying a crazy paving path up the garden to a decking area I built.

As time went on I started to slow down, and things became more difficult.  I struggled with the work around the house, and was always having to have rests, where I would invariably fall asleep.  I put this down to the progression of the IBM.

Mum, used to come and stay with me quite regularly, and always complained about feeling lethargic when she was staying.  When she went home, within a couple of days she started to feel much better.

As I got worse, mum came and stayed more.  But the lethargy she felt seemed to come on more and more quickly.  It seemed that as soon as she stepped through the door she started to feel tired.

As I said, at the bottom of the garden was a very high wall, and behind this was an industrial unit.  This was occupied by a cable television company, and the site was covered with satellite dishes and mobile phone masts.

Mum became convinced that these dishes and particularly the mobile phone masts were the reason for how she felt when she came up to me.  I was a bit sceptical, but it did seem to be the only explanation.

In 2005, I sold the house and moved to the bungalow where I am now.  Physically by this time my walking was terrible and everything was a struggle. 

However, within days of moving I started to feel a bit better.  I was less tired, had a bit more energy to do things and even a bit more strength.  It was also as if I'd been given some drug to pep me up.

Now obviously, these things are relative.  The boost was only small, but it made a big difference to me.  And mum has never complained about the feeling of lethargy she had at my old place.

And now we might have a terrible mobile phone signal, but there isn't a mobile phone mast within 1 km of the house.

I mentioned this to my consultant at the time, and he was interested to listen to what I had to say.  I'm not sure he ever did anything with this information.

I'd always been a bit sceptical about stories on mobile phone masts and their effect on peoples health, but after this experience, I wouldn't say I'm a believer, but I certainly would never move close to one again.

 

How do you cope?

A about a week or so ago, someone posted on Facebook about how they try to maintain a positive outlook and how this helps them get through the day and cope with their condition.  This gave rise to other comments both from people agreeing that a positive attitude helps, and some from people with a more negative outlook.

Now I'm not going to tell you that I've got the answer to what attitude will help you best, or that you should follow my example.  Each of us, needs to find our own ways of coping that work for us.

When you're diagnosed with a chronic condition, and when the prognosis starts to sink in, along with the realisation of the impact this will have on your life. it is inevitably going to have an effect on how you feel and how you approach life.

To me there are two ways of going.  One is that it can overwhelm you and take over your life, and this can lead to depression and despair.  I often describe this as being a miserable old man, who sits in a chair and spends his life moaning about how awful his life is.

The other, is to accept what you have got, and to get on with your life.  To concentrate on the good things in your life and get on with living it.

And I realise that that's a fairly simplistic way of looking at it, but most people to some degree fall into one of these two areas. 

I was diagnosed with Dermatomyositis at age 17, and to me I had too much life left to live, to let it take over my life, or to define me.  I remember a friend saying to me, that he could not believe how happy I was, and how I could laugh about the things that were happening to me.  My reply was, "Well how else am I supposed to be?"

It wasn't really a conscious decision to be like that but I was too young to let this condition control who I was and what I could do.  It just seemed better to get on with my life and live it as best and as fully as I could.  I'd always rather have a laugh and a joke about things, and didn't see why that should change now.

You can say that this attitude is brave or strong, but to me it just seemed the right way to approach things.  Either that, or I was too stupid to really understand what was going on.

I'm quite a practical man.  My job was as a Business Analyst/Project Manager, and some of that role meant that I was faced with problems, and needed to find the best solutions.  I also needed to make risk and cost benefits assessments.  I have transferred those skills to my personal life and to how I approach my condition. 

When I find I can't do something, or something is becoming more difficult, I will think about the best solution, and then look to see what is available to help me achieve what I want.  Sometimes I don't get the answer first time, but generally I get there in the end.

Recently I've been having a problem with a sore and uncomfortable bottom.  This has impacted on my standing in my Levo C3 stand up powered wheelchair.  My initial thought was that I needed to get a better cushion for the chair, as the one currently there is quite thin.  However, after looking at various options, it was apparent that the existing cushion was the right one for the chair, as you could not have one any thicker, as this might inhibit how you stood in the chair.

So I then needed another solution.  I looked at various pads that you could place on the cushion, but the difficulties with these were that they would move during transfers and then not be positioned correctly once you are fully in the chair. 

Eventually, I started looking at silicone pads, similar to those that women use to enhance the size of their bottoms.  (Why?).  These pads were soft and were designed to go on the bottom, exactly where I was getting the discomfort.  They could easily be put in place after I had transferred and not impact on my standing.  So I bought a pack, and they work.  It might not be the solution that works for everyone, or that anyone else might think of, but it works for me.

Many people have faith, of one kind of another, that they use to give them strength to help them cope, and I wouldn't knock that for a moment.  You need to use anything you can, and draw inspiration and strength where you can.  I don't have any faith, but I understand its place, and I would never criticise anyone for holding on to their beliefs.

However, there are two sayings which people often say to justify why you have a condition.

The first is "Everything happens for a reason." 

I simply don't believe this can be true.  What possible reason can there be for all the pain, discomfort and suffering that occurs in the world. 

I have been friends with a couple since we worked together in the late 90's.  About 9 years ago, she was diagnosed with breast cancer, and despite repeated treatments and operations, eventually it spread, and she passed away after a battle of almost 2 years.  She left behind a husband, who had lost his soul-mate, and a young son, who had lost his mum.  What is the reason for that?

Things happen - and that's it.  There isn't a reason I can see, or some grand design that we aren't party to.  Whether its a good thing or a bad thing, they're just random things that happen.

The other is, "You get what you can cope with."

Well that covers everyone that copes well with things.  But what about all those people who don't cope.  The people who find themselves ill and then hide themselves away.  The people who sit and moan, and complain about how hard life is and how unlucky they have been.

To me, things happen, and how you cope is down to the individual.  For me, I have a chronic condition - or two - but I won't let it control me or define who I am.  I'd rather be positive about my life and the way I can live it.  Concentrate on what I can do, rather moan about what I can no longer do.  And I'd much rather have a laugh and a joke.

But that might not work for everyone.

Each of us needs to find what works for us.  I'm not going to criticise someone for being negative, or for getting down about their conditions.  Nor am I going to put someone down for holding a faith, if that helps them find solace and strength.  Its about finding a way through, to enabling each of us to get through the day, and hopefully make the most of our lives.

And this is why the support groups, many of us belong to, are so important.  Because they bring all of us together, with our different personalities, ideas, faiths and attitudes, and enable us to be there for each other.  Not to judge or criticise, but to say, "I'm there for you," regardless of who or where you are. 

Carers - Again

I like to do the occasional blog about carers.  Hopefully it will help some of you understand what is involved in having a carer and how they work.  It might help you see some of the problems and difficulties that can arise with carers.  But mainly I do it to as a way of trying to show that having a carer isn't always a bad thing, that despite what the media report, in the main most carers are very good, and as a way of expressing my thanks to the carers that have come to me.

Currently here in the UK, the work of a carer seems to be massively undervalued, and as a result under funded.  There was a report yesterday that highlighted how little is paid by local authorities to fund carers.

Most carers are supplied by agencies, employed by the local authorities to provide their home care services.  To do this the local authority pays the agency a fee, which is supposed to cover the carers wages, tax and insurance contributions, supply of gloves, and other protective items, uniforms and ID badges, travel costs between jobs, and then the agencies costs which amount to about 30% of the fee.

Currently the average rate paid by councils to agencies is £12.26 per hour.  However, in one case it was found that a council was paying as little as £9.09 per an hour.

The UK Homecare Association is pushing to have the rate per hour increased to £15.19.  At this level they say the standard of care provided would increase and carers could be guaranteed to receive the national minimum wage of £6.31 per hour, for over 21's, something they don't necessarily get.

My local council currently pays £12.56 per hour - so above the national average.  The carers receive £6.50 per hour from the agency, but they have to pay for their own uniforms and do not receive any travel expenses.

Carers are employed on the dreaded "Zero-Hours" contract, which means they do not have any guarantee of work, week to week.  They do not receive basic benefits such as holiday pay or sick pay.

The job is physically demanding and very often means working very long days, usually 7 days a week.  To give you an example, I'm 6ft 2 inches tall, and the best part of 96kg (about 210lbs), and first thing every morning I need to be helped from lying down in bed, to sit up on the side of the bed.  I can do very little to help, except move with the carer as they get me upright.  Its a bit like trying to move a very big sack of potatoes - do it right and its OK, do it wrong and its difficult and could lead to either my carer or me, being hurt.

My carers come to me about 6.00am in the morning, but they will very often say that they didn't finish work until gone 10.00pm the previous evening.  Margaret, my regular carer, has been known to come into me, to put me to bed, after midnight, because an emergency has arisen - such as a client being on the floor when she gets there - but she is still expected to be back at work early the next day.

When I first came out of hospital and rehab, I didn't know what to expect from carers.  I had seen all the horror stories in the media about carers, about mistreatment and abuse, and these made me nervous of what to expect.  Naively, I though I might need a carer for a few weeks, and the once I'd adjusted to being in my own home, I could do without them.  Well, five and a half years later, I'm still waiting to make that adjustment, and realise that having carers is now an essential part of my life, and one of the things that allows me to live independently.

I have had some bad carers.  Carers who aren't really interested in what they are doing.  Carers who come in and you know straight away that they won't last very long.  Carers who have no idea of time keeping and how important having a regular routine, with carers coming at a regular time, is.  Carers who keep needing to be reminded of what they need to do.

But generally the problems that arise are as a result of the agencies administration staff.  They are generally people who have never done the job, and therefore don't know what's involved.  They give carers unrealistic work schedules, without factoring in travelling time, so that a carer can leave me at 6.45am in the morning but be expected to be at their next client 3 or 4 miles away at 6.45am.  But if the office gets a complaint about the carer being late, they will never accept that it is the office staffs fault and always blame the carers.  They are disorganised, leave arranging cover for carers going on holiday until the last minute, and communicate very badly with clients.

However the vast majority of the carers who have come to look after me have been excellent.  They understand what needs to be done, and allow me the time to do what I can, without taking over or rushing me.  They are friendly, and we can chat about things, and hopefully have a laugh.  They help me with little things, that don't necessarily come under their job description, and are kind to Mum, which counts for a lot.

On the 19th January this year, it was 3 years since Margaret first came to look after me.  She has been coming ever since.  Sometimes all three calls in a day, sometimes only one or to, but she has been a regular carer for all that time.  She is more like a friend now.  We know about each others families, and she regularly talks with pride about her little girl, Dora, and how she bosses them all about at home.

I have other carers who have come to me on and off for the same period, but no one as consistently as Margaret.

I have said before that a bad carer can be a negative influence on your life.  The can cause you stress and anxiety.  If they do their job badly, this leaves you uncomfortable and sore, and possible even dirty.  If  they come through the door and are unhappy or uncommunicative, this leaves you feeling nervous and vulnerable.

A good carer is a very positive influence on your life.  Seeing them can just give you a lift.  If they look after you well, you feel smart, clean and worth something - just all round better about yourself.  And if they are the only person you see all day, then its better if its a happy face that you can talk to properly.

So here's to the good carers.  To Jane, to Mary, to Natalia, to Jason, to Marilyn, to Hildreth and to all the others who have come, and gone, but have been a positive influence on my day.  And especially to Margaret, to whom I simply don't have the words to express my gratitude.

We seriously undervalue carers, as we do many in the caring professions, such as nurses.  Until we start to appreciate them, not just in terms of the money we pay them, but also for the importance of the job they do, and the effect they can have, then we will always have a problem with care provided to disabled and elderly people.

Sleepyhead

I haven't written a blog for a couple of weeks, which isn't through lack of something to say, its more to do with a lack of sleep.

I have always been able to sleep, anywhere and anytime.   I joke that most nights, I'm asleep before my head hits the pillow, and to be honest that's not far from the truth. 

And once I'm asleep, nothing disturbs me.  You could drop a bomb outside my room, and I wouldn't hear it, but as soon as you come into the room, I'd be awake.

Many years ago I was staying in a hotel.  About 2.00 am the fire alarm went off and all the staff and guests had to evacuate the building, into the car park.  However, I was still fast asleep in my bed, until one of the staff had to use a pass key to open my door, to rouse me.  I genuinely hadn't heard a thing.  It was a false alarm, but the guests standing outside in the middle of the night - fortunately it wasn't raining - were less than impressed that their stay in the car park was prolonged by me sleeping.

I can be in a noisy environment like a hospital, and still sleep soundly, all night.  During one stay, another patient in the same room as mine, needed to be resuscitated during the night and then rushed to intensive care.  The nurses could not believe that I had slept through the whole thing.

I used to snore very loudly.  I would keep the whole house awake with the noise, and even had neighbours comment on how noisy my snoring was.  But this didn't mean a thing to me, as I just slept through it.

I remember staying at a friends house and sleeping on his sofa.  I had gone to sleep and obviously, had started snoring loudly, as usual.  He had a pair of cats, who would sleep on his bed for a couple of hours and then would usually go downstairs and the out through the cat-flap, to enjoy the nightlife.  On this particular night, they got up as usual to go downstairs but were too scared of this booming noise coming from the living-room to venture downstairs.  They were found by my friend in the early hours, staring wide-eyed down the stairs and shaking.  He said it took at least a week before they went back to their usual night time routine, and even then they had to check out the living room, before bed time, to ensure that there was not going to be someone on the sofa, who would be making so much noise.

Even at the time when I was completely tired all the time, this wasn't because I wasn't sleeping all night, it was just because of the quality of the sleep and the difficulties I had with breathing properly.  Once I had the BiPap machine, the quality of my sleep improved, my snoring stopped, much to everyone's relief, and I was less tired during the day.

So I'm used to having a good nights sleep, and am used to getting 7 to 8 hours good quality sleep a night.

So what has changed to interrupt this slumber time?

I have a new carer who has been coming to me in the mornings to get me up and ready for the day, since before Christmas.  The time of this call should have been 6.30 am but he was very erratic with his timekeeping, and we could see him anytime between 6.00 am and 7.30 am, but never the same time two mornings running.  Anyway, I had a word with him about coming at a consistent time and we agreed that he could come at 6.00 am, which he has done ever since.

In the evenings, I do not want to be put to bed too early, and it was difficult to get carers who would come later than about 8.30 pm.  So we had agreed that my carers would come between 7.00 and half past, get me ready for bed and into my arm chair, and the Mum would help me to bed about 10.30 pm, or a bit later.

Unfortunately since the New Year, Mum has been unwell.  My regular carer, Margaret, offered to come later to put me to bed, as she does this for a few of her clients, and we agreed that she would be here from 11.00 to 11.30 pm.  The first week or so this was fine, but then we had a week where she was very much later than this.  One night for example, she walked into a clients house to find the lady on the floor after a fall.  She then had to wait for the ambulance to turn up, and take her to hospital.  This mean she wasn't here until about 12.30 am.

So I'd gone from having 7 and a half hours sleep, to then only getting 5 and a half. After a week of these very late times, I was absolutely worn out and after speaking with Margaret, she agreed to try to ensure that she will come to me earlier.  The last couple of nights have been back to round about 11.00 pm, which is much better.

But I have been amazed how this change to the amount of sleep I've been getting has effected me.

Obviously I've been very tired.  I've had this in the past, especially when I was snoring a lot and wasn't getting good quality sleep.  I'd be constantly tired, and would just drop off to sleep at any time.  I used to work at that time, and I would go to sleep at my desk, and when I got home at the end of the day.  And now I'm finding I need to have a nap in the afternoon, and even struggle to keep my eyes open watching the TV in the evenings.

But also physically it has just made everything that much harder to do.  My transfers between bed and wheelchair, or wheelchair and commode, have become that much more hard work.  Moving my arms to do things has become much more difficult, as they feel heavier and it takes more effort to do things.

But what has really shocked me is the effect it has had on me mentally.

Usually, I'm awake 10 minutes before my carer comes in, in the mornings, and we can get straight on with getting me up.  I've found when I'm tired, I might still wake up 10 minutes before he comes in, but I'm not properly awake.  And I'm much more snappy and uncommunicative.  Its alright once I've had a shower, because I'm properly awake then, but that first 10 to 15 minutes, be careful what you do or say.

And likewise, during the day, if I start to get very tired, I can revert to being difficult.

I've also found it difficult to concentrate.  I like to read for at least an hour a day.  When I've been tired, I'll read a page and not know what I've read, so have to read it again.  If Mum's talking to me, I don't find I can concentrate on what she's saying the same.

When I've been doing bits of correspondence by email, I've found myself replying to emails, to the wrong person, or chasing people for things, when I've already received them.  I have struggled to write what I want to say, and the number of spelling mistakes and grammatical errors, it doesn't bear thinking about.

Writing this blog, I have had to keep checking what I've put and the spelling, and I keep finding uncharacteristic mistakes.  (I'll apologise now for any errors in the spelling and grammar).

Even now I'm struggling with writing this.

I've also found that just talking to people, I lose the tread of what I'm saying.  I'm Chairman of a local patients group for the Doctors surgery, and during the committee meeting last week, I really struggled to get through the meeting.  And once I was home, I struggled remembering what I was supposed to be doing and what tasks I needed to do.

I'm sure there are other ways that this lack of sleep is effecting me, but thankfully I'm starting to get back to my normal 7 and a half hours a night, so hopefully normal service will be resumed.

I realise that I'm very luck to be able to sleep so well, but this recent episode has just made me realise just how lucky I really am.

The first hospital trip of 2014

Well, Wednesday last week was my first trip to hospital for the New Year.

I have a new carer in the mornings, and he has been a bit erratic with his time keeping, but he has assured me that he will be with me at 6.00 am.  As I've overslept the last couple of times I've been going to hospital, and the worry if my carer will turn up on time, I keep waking up during the night to check the time.

Well I needn't have worried.  As good as his word he is with me at 6.00 am, and he gets me up, showered and dressed.

I have my pills and my breakfast, and am all ready to go, when the transport arrives at 7.00 am.  Its not the normal driver, but a very nice young lady, and she soon has me strapped in and on our way. 

We take the normal route into London, through Thornton Heath, Streatham and Brixton, and then follow the South Bank of the Thames before crossing at Waterloo Bridge.  And then we suddenly head off into East London.  I assume the driver must have had a call to pick up another patient, as its such an unusual way to go.

Anyway we get the other patient, and head off to the hospital.  On the way a van driver pulls out on the ambulance, and with some good evasive driving we only lose the wing mirror.  After getting the van drivers details, we are on our way again, and make it to the hospital right on 9.00 am.

After a dash to the toilet, I make my way to the ward and get checked in.

The nurse looking after me today is a really nice guy call Tinashe.  He has been part of the nursing team that has looked after me for years, and he is a very friendly guy.  We have our customary chat about football - he's an Arsenal fan.

I call my respiratory physio, Christine, as we had arranged to meet today.  Sadly she is off sick, but her assistant Steve, offers to come and see me.  He has the results of the lung function tests I had done late last year, but he can't find the results from the year before, to be able to say if there is any change.  My impression is, that if there has been a change it will only be marginal, so we agree that I'll email Christine, with the date of my next appointment, and discuss these then.

As Steve leaves, one of the cannulation team arrive, and put the cannula in my left arm and take some blood for regular tests.  Then its just a case of waiting for the drugs to turn up.  I am having my regular 6 weekly Methylprednisolone (250 mg).  Whilst I wait I read my book.

After sometime a young lady comes in, who I have meet before.  She is partially sighted, and for the first time she is using a white stick.  She is always very jolly and upbeat, and never seems to let her disabilities get her down - the partial sightedness is only one of many.  She always jumps up and helps me open the toilet door if she sees me struggling.  She sits and uses her iPad, which is loaded with software so that it talks to her about what she is doing, as she has difficulty seeing the screen.

After a cup of tea and a packet of biscuits, my drugs turn up just after 11.00 am.  I am hooked up to them, but know that it only takes an hour for these to go in, plus a 10 minute flush of the line.

So about 12.30 pm the drugs have gone through and the line has been flushed.  At this point my consultant, Professor Chris Denton, arrives.  He has been my lead consultant for about 15 years, and is very good.  He is really interested in his patients and takes a real interest how we are doing as individuals, and coping with our conditions.







Because of the need to use hospital transport to go to see him, I no longer attend his clinic, but I go for treatment on a Wednesday, because I know he does his ward rounds on that day.  He knows that I generally have a good understanding of my conditions, and that I am aware when something is wrong.  We therefore have an understanding that we don't need to see each other every time I am at the hospital for treatment, but if I need to see him, I call his secretary, and ask her to point him in my direction, next time I am there.

We discuss how I am generally, and I show him some pictures of me standing in the Levo C3 powered standing wheelchair.  He is really pleased that I am able to use this, but also that I feel I'm getting some benefit from it.

The reason I have asked to see him is about my Methotrexate.  I take 25 mg weekly on a Saturday.  I have been in this dose for years, and have usually taken it orally, but for sometime injected myself.  I have never had any particular problem with Methotrexate, until recently.

During the last 6 months, I have noticed that more and more regularly, I have started to feel unwell on a Saturday after taking the Methotrexate.  Sometimes this is just for a couple of hours, but more and more regularly, I spend the whole day feeling nauseous, worn out and with no appetite.

We discussed this for a bit.  All my blood tests are fine.  Professor Denton, still wants me to be taking Methotrexate, as although we aren't completely sure what its doing, as part of my overall drug regime, it seems to be helping me keep reasonably stable.  We therefore agree to reduce the Methotrexate to 20 mg weekly, and see what happens.  We could look at changing how I take my Folic Acid as this might stop the sickness.

He stresses that if my DM and IBM start to deteriorate as a result of this change, I must contact him immediately.

After he goes, Tinashe comes and removes the cannula, helps me on with my fleece, and after making my next appointment, I'm on my way.

I check in at transport just before 1.00 pm.

After having waited a while a lady comes in, in a wheelchair, pushed by her husband and with her daughter.  There aren't many seats left, but they put the wheelchair next to mine, and the husband sits down behind me.

He then proceeds to spend the next couple of minutes kicking the wheels on the back of my wheelchair.  Just as I turn round to tell him to stop, he gets up and announces that he is getting the bus home, as he is bored, and the daughter can go in the ambulance.  As he leaves a huge cloud of stale smoke smell goes with him.

The lady sits in her chair and you can hear every breath in and out is an effort.  She seems to rattle as she breaths, and everything seems to be an effort.


Not long after this she is taken out to an ambulance to go home.  About 5 minutes later - and after a 90 minute wait - I get taken out, only to find the lady sat in her wheelchair, puffing away on a cigarette!


Anyway, we get underway about 2.30 pm and after a trouble free journey, I get home just after 4.00 pm.  I am exhausted.


After dinner, I sit down to watch the football and don't get to see much of the game as I've nodded off.

Lymphoedema and Lipodermatosclerosis

I was prompted to write this blog by a posting sometime ago on the TMA community forums on the subject.

 

When I came out of hospital and rehab, in a wheelchair in September 2008, I had no idea of the additional complications that being in a wheelchair could cause.  Naively, I just thought that I'd have my Dermatomyositis and Inclusion Body Myositis, and the other existing conditions, and would now carry on with these, but in a wheelchair.  No one had told me about the added complications that could occur if you are in a wheelchair and immobile.

When I first came out of rehab, I was having regular physiotherapy sessions, where they would get me standing up, using a standing frame.  However, once they had made the decision that there was not going to be any long-term improvement in my condition, they stopped these sessions.  This was the point where everyone started to tell me that I would never stand again.

 

Shortly after this I had the first sign of the future complications that being in a wheelchair would cause.

 

This would have been about March or April 2009 - so about 6 months after coming out of rehab.  One morning when my carer was getting me up, she noticed that I had a small abrasion on one of my toes.  She put a small dressing on it and advised me to call the district nurse, to get it looked at and dressed properly.

 

Well I thought it was such a small abrasion that it wasn't worth making a fuss about, as it would be cleared up in a couple of days.

 

After about 10 days, and no improvement, I finally conceded that perhaps it might be best to get it looked at.  I called my doctor and he arranged for the district nurse to come and see me, to assess and dress the wound.

 

The nurse came out the next day, and after looking at it, applied a dressing. She advised that she would put in a prescription for more dressings and call back later in the week.

 

When the dressings turned up, I thought we must be catering for a small disaster zone.  There were different types of dressings, saline and gauze to clean the wound, tape and cream.

 

Well for about the next 6 to 8 week, the nurse came twice a week to clean and dress the wound.  Eventually it healed up, and just as it did, another abrasion opened up on a toe on the other foot.

 

In total the nurse came to me for about 6 months, twice a week until these small wounds healed up properly.  This was a consequence of being in a wheelchair, and not being able to stand and get the fluids moving properly round the body.

 

During this period, I noticed that the skin on my feet and legs, below the knees, started to become very red.  It looked like my legs were very sore, but they weren't.

 

My legs also started to swell, and during warmer weather, they would ooze a clear liquid.  As a consequence they started to need to be dressed, to try to stop the swelling and to help prevent them becoming infected, where they were oozing.  I was advised that I should sleep with my feet and legs elevated, to help reduce the swelling.

I also started to get some pain in my legs, usually at night.  During the day when I could move my legs, it wasn't rally a problem, but at night, when I can't move, it would keep me awake, until Mum had to come in and move my legs, or massage them.

 

During this time when the nurse was visiting I was referred to the local Vascular Team, to see if they could help improve the condition of my legs and feet and help with the healing of any future wounds I might get on my feet and toes.

 

The lead consultant, a lady called Ms Vig, was very nice and very concerned about my legs and feet.  She took a lot of trouble examining my legs, and listening to my medical history and how I had become wheelchair bound.

 

She prescribed some new creams to help improve the condition of the skin, and suggested that I should be admitted into hospital for 3 days to have my legs scanned, and also to have a treatment of a drug called Flolan, which would be administer intravenously over 3 days, and would be used to open up the blood vessels in my legs and feet, and improve circulation..

 

I was apprehensive about going into hospital, as this would be my first admission to stay, since being in a wheelchair, and I was concerned that being in hospital would be taking me out of my normal comfort zone, and into an environment where my care, beyond what is normally provided in hospital, would be very much outside of my control.  I also did not want to stay beyond the 3 days she had outlined, and she assured me that not only would I go to a ward where all her patients go, so she could guarantee my treatment and care, but that everything would be set up so that I had the treatment and scan in the shortest possible time.

 

So armed with these assurances, I agreed to go in.  It was now December 2009.

 

When I was admitted, it wasn't to the ward Ms Vig had said, as they didn't have a bed there for me.  The nurses on the ward didn't seem to know why I was being admitted or which consultant I was under.  Worst of all, they didn't seem to know how to cope with someone in a wheelchair.

 

I won't go into that now, but after 24 hours and not seeing a doctor, having had no treatment, and being treated like I was a nuisance by the nurses, and other patients - who seemed to think that me needing to be hoisted and helped, was just me being lazy - I wanted to go home.

 

Then I was transferred to the right ward, and everything changed.  The nurses were lovely, they listened to me and were very helpful, and the other patients were friendly.

 

Sadly, the doctor who came to see me, didn't really know why I was there, despite having my notes.  I asked to see Ms Vig, but was advised that she had gone on holiday, so I had to explain why I was there.

 

Later that day we started the Flolan.  This was administered slowly. over a long period of time in order to prevent any side effects.  I have previously had a drug called Iloprost, which is similar in what it does, but when you are having it you feel nauseous, have headaches and an aching neck, very tired, and in extreme cases you cannot tolerate light.  The Iloprost is much more aggressive in the way it acts on the body, which causes these side effects, but also very effective.  The Flolan is less aggressive, and therefore there is less likelihood of any side effects, but it can be less effective.

 

During this treatment and when the 3 days of treatment had finished, I asked about the scan, but nothing seemed to happen.  Eventually after being in for over a week, I insisted on seeing the doctor again, who again claimed to know nothing about a scan.  After a good deal of shouting on my part, he looked in the notes again, and saw that, yes, I should be having a scan.  By this time it was Friday lunchtime, and he said that would not be able to arrange the scan until the following week.

 

After I had come down off the ceiling, I told him that I had been assured by Ms Vig, that this would all have been done, whilst I was having the Flolan, so that I didn't need to stay in hospital any longer than necessary.  I advised him that I saw no reason that he couldn't arrange the scan that afternoon, and that because of his inefficiency, I was now blocking a bed, that could more usefully used for someone who actually needed treatment.  If he couldn't arrange the scan, he should be prepared for me to leave, and he could then explain to Ms Vig why I hadn't had the scan as planned.

 

He went away and 5 minutes later, a nurse came and told me that the scan would happen early in the afternoon.  She congratulated me on pushing to get this done.

 

Well the scan went ahead, but sadly the results were to late coming back to the ward for me to be discharged that evening.

 

Overnight it had snowed, and was bitterly cold.  I was discharged but the nurses wanted to send me home in just a hospital gown.  I pointed to the weather outside and asked the senior nurse, how she had been dressed when she came to work in the morning, and whether she had been warm enough.  She took my point and got me dressed in my own clothes, before letting the ambulance men take me home.

 

(I'll just make the point now that I am a great fan of the NHS and all who work in it, but there are occasions when you need to stand up for yourself.  I'm lucky that most of my doctors and the nurses who normally look after me, have known me for years, so I am usually spoilt).

 

I saw Ms Vig again, in an outpatient clinic, and she advised that nothing had come up on the scan to show that there were any vascular issues in my legs.  The Flolan, had made little difference to how my legs felt or their condition.  As there were no vascular issues, she advised that she would refer me to the Dermatology team.

So from early 2010, I started going to the Dermatology team at my local hospital.  This first doctor I saw examined my legs and feet, and prescribed some cream.  She admitted that she knew nothing about my conditions, but wasn't really interested in talking to me about them.

I went away and used the creams as advised but these made no difference.  In fact the skin just became worse.  By this time there was a build up of very dry skin on my legs.

At the Dermatology clinic, seeing the condition of my legs I was told that I couldn't be using the cream properly as prescribed.  I assured them I was and was sent home, after being told if I use the creams properly my legs will improve.  I was also told that I should sit all day with my legs and feet elevated above my heart.

They just continued to get worse.  The dry areas increased in size until they all merged into one large dry area on each leg and foot.  In order to stop the swelling, we had started to bandage the legs after applying the cream.  Each time these bandages were taken off, a load of dry skin would fall off my legs, and we were left with a pile of skin on the floor.

The next time at Dermatology, I saw a new doctor.  She told me that she knew all about my conditions, and that it was not possible for me to have both Dermatomyositis and Inclusion Body Myositis.  I must have something else.  I asked her what she thought I had, and she could not answer.  She examined my legs and prescribed a different set of creams.  I asked if compression stockings might be useful, but was ignored.

My legs just got worse.  Although the skin wasn't sore, because of all the dry skin and how this kept coming off, the skin below was very delicate and easy to break.

And this is how the pattern of things went on.  I would go to Dermatology, and they would scratch their heads, and prescribe different creams.  The condition of my legs and feet would continue to deteriorate.  I'd periodically ask if compression stockings might help and this was ignored.

 

Then in later 2011, I was seeing my main consultant, at another hospital, and I asked him to look at my legs and feet.  I told him what had been happening and he was appalled, not just by the treatment I had been getting but also at the state of my legs and feet.

 

He picked up the phone and rang a colleague in Dermatology, to ask if she would see me.  She apologised that she could not see me that day, but she could the following day.

 

I met with Dr Victoria Swale, the following morning.  She had seen my notes, and despite there being 5 files of notes, she had read at least a good part of them, because she knew about my history.  We discussed the treatment I had been getting and she asked if I had been given a diagnosis.  I said that I hadn't.

 

She then took the dressings off my legs and feet, and as soon as she saw them I could tell by the look on her face she knew what was the problem, and importantly, that she could help.

 

After examination, she took some of the dry skin off my legs, to be sent for analysis, in case there was any infection present.  However, she thought that this was unlikely. 

 

She then advised me that I had Lymphoedema and (Acute on) Chronic Lipodermatosclerosis. 

 

She made a couple of changes to the creams I was using, and how and when these should be applied.  She then advised that the real solution to this problem was to get me into compression stockings.

 

Over the next couple of weeks I had appointments to test the Doppler readings in my feet and ankles, to ensure that there was no damage to the blood vessels, and that there were good pulses in these areas.  I also saw the Tissue Viability team, who started to apply pressure bandages, to my legs and feet, in order to build up the tolerance to pressure on the skin on my legs and feet.

 

The pressure bandages, started off with 2 layers of bandaging building up to 4 layers, to increase the pressure being applied.  At the 2 layer level it was no problem, but when we got to the 4 layer level, the pressure was quite a lot, and as I wore the bandages the more they seemed to tighten.

 

On several occasions the bandages tightened so much that it felt like my legs were being crushed and we actually had to cut the bandages off, as I was in so much pain.

 

After about 2 months of the pressure bandages, I was then measured up for the compression stockings.  These are made-to-measure, specifically for me and for each leg, and are worn to just below my knees.  They last for between 4 to 6 months, when they need to be replaced, after having re-measured my legs to take into account any changes in the size of my legs.  I wear them each day, but take them off at night.  Fortunately I have very good carers who can take them on and off, relatively easily.

 

Almost as soon as I started wearing the compression stockings there has been a change in my legs.  Within 2 months, the legs weren't swelling much, and most of the dry skin was starting to go.  Within 6 months, there were only small patches of dry skin, the general colour of the skin on my legs and feet had started to return to something close to normal, and in some areas, the hair started to grow again - a clear sign of healthy skin, and that the fluids are moving normally through the skin and muscles.

 

Almost 2 years after first wearing the compression stockings, my legs are hugely improved.  Standing in my standing wheelchair will also be a factor in helping my legs improve, but without the improvement gained with the compression stockings, I might not have been able to achieve this.

 

There are two morals to this story.

 

Firstly, don't neglect your legs and feet, and try to be aware of the additional complications that can come with lack of mobility, and especially with being in a wheelchair.  Having sore, tender, painful, uncomfortable legs and feet can make you really unhappy - even when you can't walk.  It makes such a difference if they feel better, to how you feel.

 

And secondly, make sure you see the right person as soon as you can.  All the time I was seeing the Dermatology team locally I always thought I was in the wrong place, and not getting the right treatment, but I didn't want to be a nuisance.  However as soon as I saw Dr Swale, I knew she was going to help.  She knew and understood about my conditions, and most importantly, from almost the first time I saw her, things started to improve.

  

Lymphoedema

 

Lymphoedema is a chronic (long-term) condition that causes swelling in the body's tissue. This can lead to pain and a loss of mobility.

Lymphoedema usually affects the arms or legs, although in some cases there may be swelling in the:

chest

• head
• genitals

Lymphoedema is caused by damage or disruption to the lymphatic system.

One function of the lymphatic system is to drain excess fluid from tissues. If the lymphatic system is disrupted or damaged, it can lose this ability and the excess fluid will cause the tissue to swell.

Types of lymphoedema

There are two main types of lymphoedema:

• Primary lymphoedema – which develops at birth or shortly after puberty and is caused by faulty genes.
• Secondary lymphoedema – caused by damage to the lymphatic system as a result of an infection, injury, trauma, or cancer.

Secondary lymphoedema often develops as a side effect of cancer treatment. Surgery is often necessary to remove lymph glands to prevent a cancer from spreading, this can damage the lymphatic system.

Radiotherapy, where controlled doses of high-energy radiation are used to destroy cancer cells, can also damage the lymphatic system.

Read more about the causes of lymphoedema.

Who is affected?

It is estimated that 1 in 10,000 people are affected by primary lymphoedema.

Secondary lymphoedema is a relatively common condition, affecting an estimated 100,000 people in the UK.

Secondary lymphoedema occurs more frequently in women, possibly because it can sometimes be a side effect of breast cancer treatment.

Cancer Research UK estimates than one in five women may have lymphoedema in their arm after they have had radiotherapy or lymph nodes removed to treat breast cancer.

If you are at risk of developing lymphoedema due to cancer treatment, you may be offered an assessment as part of your aftercare. Read more about how lymphoedema is diagnosed.

Treating lymphoedema

There is no cure for lymphoedema, but it is possible to control the symptoms using a combination of different techniques, such as massage and compression garments.

There are also things you can do to help prevent the condition getting worse. This includes taking care of your skin to avoid infection and having a healthy diet and lifestyle.

If you have received treatment for cancer, these measures may also help to prevent lymphoedema.

Read more about how lymphoedema is treated and preventing lymphoedema.

Complications

People with lymphoedema are more vulnerable to infection. This is because infection-fighting white blood cells, called lymphocytes, which travel in the lymphatic system, are prevented from reaching the part of the body where they are needed.

A bacterial infection of the skin called cellulitis is one of the most commonly reported infections in people with lymphoedema.

Read more about complications of lymphoedema

Lipodermatosclerosis

In some people, the area becomes red and inflamed and can be painful. This problem is called lipodermatosclerosis.

The symptoms of lipodermatosclerosis include:

• hard, tight skin 
• red- or brown-coloured skin 
• the layer of fat and soft tissues underneath the skin (subcutaneous tissue) may become hard, causing the leg to look like an upside-down champagne bottle

Treatment

Options may include:

• emollients (moisturisers) 
• topical corticosteroids 
• graduated elastic medical compression stockings

There are also some self-help techniques that you can try. These treatment options are described in more detail below.

If you have varicose veins, graduated elastic medical compression stockings will often help to treat these as well. However, in some cases surgery may be necessary.

Lipodermatosclerosis (hardened, tight skin) is treated the same way as varicose eczema. If you have a venous leg ulcer, you can also read information about treating venous leg ulcers.

Self-help

There are some steps you can take to care for your varicose eczema:

• avoid injuring your skin – for example, by knocking into a chair, as this could lead to an ulcer (open sore) developing
• raise your legs when you are resting – for example, by propping up your feet on some pillows to help reduce swelling 
• keep physically active – this will improve your circulation and help you maintain a healthy weight

Exercise

Fluid builds up in the lower legs if you sit or stand for too long, so it is important to keep moving. Walking will get your muscles working and help to push the blood through the veins to your heart. The National Eczema Society also recommends:

• flexing your feet regularly
• rising up onto your toes or bending down at the knees

Emollients

Emollients are substances that help to soften and smooth your skin to keep it supple and moist. They are one of the most important forms of treatment for all types of eczema.

As varicose eczema can cause your skin to become dry and cracked, it is important to keep it moisturised to prevent further irritation. Emollients prevent water being lost from the outer layer of skin (epidermis), as well as adding water to the skin. They act as a protective barrier to keep moisture in and irritants out.

Choice of emollient

A number of different emollients are available. Some can be bought over the counter without a prescription, but if you have varicose eczema ask your GP to recommend a suitable product.

You may need to try several different emollients to find one that works for you. You may also be prescribed a mixture of emollients. For example:

• an ointment for very dry skin 
• a cream or lotion for less dry skin
• an emollient to use instead of soap 
• an emollient to add to bath water or use in the shower

The difference between lotions, creams and ointments is the amount of oil that they contain. Ointments contain the most oil so they can be quite greasy, but are the most effective at keeping moisture in the skin. Lotions contain the least amount of oil so are not greasy, but can be less effective. Creams are somewhere in between.   

If you have been using a particular emollient for some time, it may eventually become less effective or may start to irritate your skin. If this is the case, your GP will be able to prescribe another product.  

How to use emollients

If you have varicose eczema, you should use an emollient all the time, even if you do not have any symptoms.

To apply the emollient:

• use a large amount 
• smooth it into the skin in the same direction that the hair grows 
• do not rub it in
• apply every two to three hours for very dry skin 
• after a bath or shower, gently dry the skin, then immediately apply the emollient while the skin is still moist 
• do not share emollients with other people

Creams and lotions tend to be more suitable for red, inflamed (swollen) areas of skin. Ointments are more suitable for areas of dry skin that are not inflamed. 

It is very important to keep using emollients during a flare-up of varicose eczema, because this is when the skin needs the most moisture. Apply emollients frequently and in generous amounts during a flare-up.

Side effects

The most common side effect of using emollients is a rash. If you have varicose eczema, your skin is sensitive and can sometimes react to certain ingredients in an emollient. If this happens, speak to your GP, who can prescribe an alternative product. 

Be aware some emollients contain paraffin and can be a fire hazard. As some emollient products are highly flammable, do not use them near a naked flame.

Emollients added to bath water can make your bath very slippery, so take care getting in and out of the bath.  

Topical corticosteroids

If your skin is red and inflamed from a flare-up of varicose eczema, your GP may prescribe a topical corticosteroid (one that is applied directly to your skin). Corticosteroids work by quickly reducing inflammation.

Corticosteroids are any type of medication that contain steroids, a type of hormone.

Choice of topical corticosteroid

Different strength topical corticosteroids can be prescribed depending on the severity of your varicose eczema. If you have flare-ups of lipodermatosclerosis, you may need a very strong topical corticosteroid. Therefore you may be prescribed a cream or an ointment.

If your varicose eczema is moderate to severe, you may need to apply topical corticosteroids both between flare-ups and during them.

If you need to use corticosteroids frequently, visit your GP regularly so they can check that the treatment is working. 

How to use topical corticosteroids

When using corticosteroids, apply the treatment sparingly to the affected areas. Always follow directions on the patient information leaflet that comes with the corticosteroid, as it provides details about how much to apply. 

During a flare-up of varicose eczema, do not apply the corticosteroid more than twice a day. Most people only have to apply it once a day. When applying the topical corticosteroid, you should:

• apply your emollient first and wait several minutes before applying the topical corticosteroid (until the emollient has soaked into your skin)
• apply a small amount of the topical corticosteroid to the affected area
• use the topical corticosteroid for seven to 14 days
• continue to apply the treatment for 48 hours after the flare-up has cleared

If you are using corticosteroids on a long-term basis, you may be able to apply them less frequently. Your GP will advise you about how often you should be applying them.

Also speak to your GP if you have been using a topical corticosteroid and your symptoms have not improved.

How much topical corticosteroid to use

• topical corticosteroids are measured in a standard unit called the fingertip unit (FTU)
• one FTU is the amount of topical steroid squeezed along an adult's fingertip
• one FTU is enough to treat an area of skin twice the size of an adult's hand

Read more information about fingertip units and dosage of topical corticosteroids.

Side effects

Topical corticosteroids may cause a mild burning or stinging sensation as you apply them. In some areas, they may also cause:

• thinning of the skin, particularly in the crease of your knee joint
• telangiectasia (visible blood vessels), particularly on the cheeks  
• acne (spots) 
• increased hair growth

Generally, using a stronger topical corticosteroid or using a large amount of topical corticosteroid will increase your risk of getting side effects. For this reason, you should use the weakest and smallest amount possible to control your symptoms.