The baler

I haven’t been feeling the best as I have been suffering from a seasonal cold over the past week, so have been taking paracetamol to dry my cold up and to ease my aches.

It was a cold morning in Newtownabbey this morning and no longer had I started work this morning I got a call to load 6 cardboard bales onto the back of a lorry.

Theses bales weigh approximately somewhere in the region of a ¼ of a ton in weight and are brutes to move after they have been sitting outside in the damp air of winter. They soak up the dampness like a sponge making them more than they actually weigh when dry.

I had to get a two wheeled trolley to move them from the bay where they are kept to an area where they can be uploaded onto the lorry by the use of a forklift truck.

I might as well have been working on my own as my helper was just a shadow getting in my way.

One bale in particular became a problem because it had become swollen and had jammed itself between the baling machine and the railings that secure the baling bay. I hawked and pulled using the trolley to un-wedge   the jammed bale and only for the lorry driver coming to my aid did we get it finally free to load unto the back of the lorry.

During all this my muscles became very sore and weak and went into spasms and I was that bad that my muscles felt pumped up making me feel like the incredible hulk, because of the feeling of my muscles I knew that I would be suffering from myoglobinuria later in the day. My symptoms were flu like with the symptoms of hypoglycaemia all rolled in together, it wasn’t until after 9am and after I had breakfast of wheat-a-bix and semi-skimmed milk with tea and toast with a banana that I started to come round. It wasn’t until lunchtime that I started to urinate when I noticed that my urine was coke coloured. I knew what was happening early on so I started drinking plenty of water and I drunk about two litres of Evian still water.

At the time of writing this about 5:30pm UK time everything seems normal again other than my muscles feeling dull, compared to other myoglobinuria bouts that I’ve suffered this one is somewhere in the mid range of severity as my worst last for two days many years ago when I used to train with weights before I was diagnosed with McArdle’s disease.

I got on the scales the other day and looking at the dial was scary, though that excess weight wasn’t all gained over the festive season, but action is demanded if my McArdle’s disease is to improve, as I’m a few stone over weight – way above the weight that my neurologist has suggested that I shouldn’t go above due to the impact that the extra weight has on my muscles. He made me carry a chair around the neurology department to emphasise the impact that excess weight has on your muscles.

So I have determined within myself that action is required and the sooner the better, so this weekend I have embarked on a health and fitness regime to improve my general way being and my McArdle’s disease.

I plan to use the LiveStrong calorie tracker to manage my calorie intake.

As I start work early in the morning I’m on the road at 7am going to work, and it is astonishing to see the uptake on fitness regimes at the start of the new year. I wonder what the success rate is by the time we get to July. People start off with good intentions, but fall by the wayside, I hope that I’m one of the successful ones.

I hope to start cycling again when our British weather improves and I have settled into a healthy eating program, I know the hurdles that need to be cleared as I have been in this situations many times before.

Happy New Year everyone.

During the week my wife who works in the our health centre ordered me a repeat prescription of Co-Dydramol and some other medication for me, and my wife’s friend went to pick it up for me yesterday, but the doctors at the Grove Medical Practice in the Grove Wellbeing Centre failed to write it up for me without any explanation, though they had written up the other repeat script for me, I suspect that it is because they are being pressurised by our health minister to save money by cutting back on their prescribing of pain relief medication, doctors are allowing political influence to override clinical decisions which is an unethical and bad practice when dealing with patients who have chronic conditions which require pain relief medication.

When I found out that the doctors at the Grove refused to write up a script for me for pain relief I was bouncing with annoyance so then I had to phone Bel-Doc up and the doc that I spoke to was a bit of a dimwit and had to talk him through McArdle’s disease because of his total ignorance. Trying to get medication from him for my contracture’s was heavy work and he gave me one diazepam 2mg and two co-codamol to see me through to Saturday morning a period of over 12 hours before I could get a script, and when I got the script it was a limited supply of eight diazepam and 30 co-codamol tablets which is totally insufficient to manage my pain and stiffness.

It seems to me that that medium strength to strong painkillers have become a target of cutbacks regardless wither the patient needs them or not, tablets that can’t be bought over the counter.

It’s about time that our politicians who know nothing about medicine stopped interfering with the day to day clinical decisions of GPs because it is unethical for politicians to influence the prescribing habits of doctors who are dealing with the patient and their medical problems on a day to day basis.

Because I didn’t get medication when I required it, it now seems that because I have carried on without pain management medication that the purine in my muscles has start to break up causing uric acid in my blood to be elevated which in turn causes gout from which I’ve started to suffer. When I awakened this morning I had terrible pain in my right foot and big toe.

I must thank our politicians for interfering in my medical care, thanks very much.

C.H.Spurgeon

On Saturday night 27/03/2010 I went to bed as normal putting the clock forward, but on Sunday morning I awoke in the crucible of affliction, the pain in my right foot was the worst pain that I have ever suffered, and that is saying something because of the McArdle’s pain that I have suffered over the years.

When I awoke I knew what it was, it was that gout! Over the years I’ve suffered from gout but only with very mild symptoms, but now it has visited me with a vengeance.

I couldn’t put my right foot to the ground without excruciating pain going through my foot, I had to hobble and shuffle if I thought that Sunday was bad Monday still had to come.

On Sunday night through to Monday morning I received no sleep due to the pain and discomfit that I was suffering from, but when my wife was going to work I went with as she works in the health centre where are doctor is based, I booked into their open excess clinic that they hold for acute cases on Monday mornings.

When I was called it was to the nurse practitioner I supposed that was a blessing in disguise because I don’t think a doctor would have treated me in the same way, she took my blood pressure and it was normal, and then she booked me into the treatment room for blood tests for uric acid and other inflammatory marks, the only thing was that I had to hang about for about an hour before the treatment room could me as they run an appointments system and they were fully booked.

I’ve to go back on Thursday to see the nurse practitioner for the blood results and to have my gouty foot and big toe reviewed; at the minute I’m taking 30/500 co-codamol along with ibuprofen 400s it dulls the pain to an extent but it never leaves me completely.

I believe that because I suffer from McArdle’s disease that I’m predisposed to the affliction of gout. I don’t really know what the medical professions take on this is, but I do know that every time that I have been physically active over the next few days I would have suffered from mild gout which probably would have been classed as asymptomatic.

On Saturday in work I had one of the most active days that I’ve had in a long time, we had two cardiac arrests along with all the running about that involves with only two of us on duty, I had to move the intubation trolley from theatre twice and I also had to change a G size oxygen cylinder which means lifting it into the back of a van and out again twice, heavy work! That is not to forget the normal routine work as well, along with all the blood gases. I believe that with all this activity on Saturday is what triggered this episode of gout as I believe my muscles were breaking down and that if my CK levels (creatine kinase) were checked this would be verified. All proteins whether produced internally or consumed as food produce purine the gout causing culprit.

I now know what Charles Haddon Spurgeon went through when he suffered from gout. The only thing being that he hadn’t got the use of modern medicine that I have, but I might as well be living in Victorian England because trying to get medication from GPs is like trying to get blood from a stone.

The pain

Over the past couple of days I have been doing some work around the house while my daughter is in France on her university placement year, so I took the opportunity to decorate her bedroom and to remove the old built-in wardrobe which is in her room.

As I’m on my days offs from work I started the work yesterday, Thursday, I had first of all to remove the old built-in wardrobe which didn’t pose to much bother. Next thing I had to do was to dig out my wallpaper stripper which basically is a large kettle with a paddle you use to move over the wallpaper to loosen it with the steam, I started this at about 9am and I was at it continuously until about 3pm with a couple of coffee breaks in between, then I rested and had lunch.

This wallpaper stripping work can be had work as it is like being in a sauna, a room filled with steam, all the work is in the arms and shoulders, at the time this wasn’t a problem which is usually the case, it is after the problems start. Last night I could feel the muscles in my neck getting twinges and in my arms and in my shoulders and my back became very sore.

This morning I had to wash the ceiling down and do some painting of the ceiling, but as I was doing this the muscles in my arms, shoulders and neck were aching and were dead, it was a problem holding my arms above my shoulders, but I just ploughed with the work I had to do, it just took a bit longer.

I must carry on because my daughter will be home for Christmas and if I don’t have the work completed for her it will be one big disappointment for her, so I have about four weeks to complete this task on my days off that includes getting a new wardrobe fitted, all the painting and wallpapering done and to have new carpet fitted, the work must go on regardless of the aches and pains of McArdle’s disease, the only thing which probably would stop me from completing this would be if I suffered from myoglobinuria hopefully this can be avoided.

Getting there!

View from the Castle Hill

I’m just back from France after dropping my daughter of in Lille where she is working in a French school as a language assistant, then we headed south to Nice, where we spent ten days and celebrated our silver wedding anniversary while we were there.
We spent a week in Lille doing plenty of walking and one day alone I covered approximately 10 miles while my wife and daughter went around the shops.
While in Nice my wife and I were doing over six miles a day and in one day in particular we walked the chateau hill without stopping until we reached the top. The Castle Hill overlooks the old town and the Promenade de Anglais.
When I came home on Thursday I weighed myself and had actually lost 7lbs which was great to see.
Over the whole time in France I felt fairly well and was drinking plenty of water and eating well. During my time in France I stopped using B6 which I’ve been on for over a year without any reaction.

I’ve been reading “The McArdle Disease Handbook” by Kathryn Elizabeth Birch, Ph.D. And it makes very interesting reading.

When I was diagnosed with McArdle’s disease in 1991 information was rare and hard to come by, but thanks to the Internet information about McArdle’s disease is more readily available today.

The new handbook about McArdle’s disease accumulates all scientific the relevant information available and presents it in a way that is plain and easy to understand by the sufferer and the lay person, even though it covers the technical details of McArdle’s disease which can be baffling when one comes across it for the first when written in a medical fashion by the scientist, but thankfully today thanks to the Vodafone Foundation’s “World of Difference” programme McArdle’s patients have a mine full of information which can only be a good thing when one looks back to the bad old days when there was a famine of information!

The Grove Wellbeing Centre

Growing up in Belfast with undiagnosed McArdle’s disease during the 1960s, 1970s – although I suffered all the classic symptoms – was compounded by the fact that the GP I attended at North Queen Street surgery in Belfast because he was totally ignorant of my symptoms – I had enough of his ignorance and left him – he put my symptoms down to psychological problems which it wasn’t. My problems were physical rather than psychological. I was being labelled as a hypochondriac. I remember continually attending the doctors from the age of fifteen until I was 31 before actually being diagnosed even though I suffered regular bouts of myoglobinuria throughout this time because I was doing work which I wasn’t made out for.

The ratio for McArdle’s patients in the population is 1 in 100,000. So Northern Ireland would have at the most 15 McArdle’s patients but, I believe that in fact there are only about 10 McArdle’s patients in Northern Ireland. So that is ten McArdle’s patients being on the books of 10 clueless GPs if all these McArdle’s patients have different doctors.

At one stage I made a complaint against one of my GPs because he wouldn’t prescribe some Pro-mod, a protein supplement which got me nowhere other than a cold reception and he actually threw a wobbler at me but, I didn’t let him away with it, I told him to wise up that I was the patient and that he was the doctor and that he should act like it.

It now seems that I’m starting to suffer all this ignorance from GPs towards McArdle’s disease all over again they just don’t seem to have a clue, they may read articles in text books about McArdle’s disease but they don’t seem to have the medical capacity to translate the theory into the physical world. I’ve got to the stage where I don’t even attend the Grove Wellbeing Centre with McArdle’s disease, I can’t even remember the last time I was actually at the doctors specifically with McArdle’s. When I told them about the connection between gout and McArdle’s disease they just were not interested, and when I gave them a specimen of
myoglobinuria it was binned without testing and I didn’t even get a CK or kidney function test even though I felt terrible with flu like symptoms. Ignorance is all I have suffered from GPs towards McArdle’s disease.

There’s nothing that you can do to breakdown this ignorance from GPs it’s like banging your head against a brick wall because it’s a closed shop of the old school tie brigade who close ranks they can’t see the wood for the trees! I feel like changing GPs but that would just lumber me with another bunch of ignoramuses.

On Sunday morning I did my back in big time lifting boxes in filled with x-rays which weigh a ton weight, they are full of silver, it’s a real struggle to get out of bed in the morning, I should be at the doctors but suffering their ignorance is harder to deal with than dealing with a bad back.

The NHS in Northern Ireland doesn’t seem to have a standard protocol with guidelines to deal with McArdle’s disease patients; they don’t even have a multi discipline clinic for McArdle’s patients with physios and dieticians or genetic counsellors. When I was diagnosed I should have received genetic counselling but that never happened.

I feel like writing to Edwin Poots the Stormont health minister but I don’t think that would reap much benefit. So writing to him is very unlikely.

Moving junk on a Sunday morning is a shock to the muscles as it’s not something that is normally done, and especially after I knackered myself in the garden during the week.

My body has been in recovery and there is a lot of activity taking placing in my muscles as they are twitching like mad, my wife couldn’t believe how violently my muscles were twitching.

I’m working on the van this week delivering all the stores around the hospital, food, pharmacy and delivering the post and collecting the post from the out lying wards and departments.