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Kenalog-the only treatment that worked

Most people don’t know what a Kenalog injection is  but I imagine that there are quite a few in the sporting world who are now familiar with the drug Triamcinolone. Triamcinoclone is an anti-inflamatory cortico-steroid used to treat a number of conditions, including hay-fever and asthma and which is prescribed under a number of trade-names, including Kenalog.

As a life-long sufferer of severe hay-fever which often led to ad-hoc asthma  attacks when the pollen count was very high, I tried every drug available to control my symptoms. I admit that no-one is going to die of hay-fever, but the symptoms are horrible and quality- of- life-limiting. This is before it develops into an asthma attack, which we know can be fatal.

My symptoms were so bad that when I was referred for immunotherapy treatment, the allergy  specialist who was evaluating my claim for treatment said that he had never seen anti-bodies attack the pollen which was introduced to my blood sample so aggressively and recommended that my 3-year series of immunotherapy injections should start as soon as possible.

When I was a young girl, my sister used to take me to watch her and her friend play tennis. She still remembers sitting me down on the bench by the court and covering my head with a damp towel. I was “happy” to sit like this until they had finished because the damp towel kept the pollen out of my eyes and nose. My sister then used to lead me home by the hand; me with the towel still on my head.

Unless you have suffered with hay-fever, you cannot grasp the scale of irritation, fatigue and frustration which goes with it so, when a group of hospital  Doctors against whom I was playing a tennis match and who couldn’t believe that I was still playing despite having to sneeze and blow my nose between each point suggested I had a Kenalog injection, I was more than happy to trot off to my GP and demand the needle.

At the time in the mid 1990’s, my GP was happy to prescribe it and so I arrived back at the surgery within a couple of hours desperate as I was, for the nurse to administer the drug. I had been told that it was a high-dose steroid that I was having and that there were potential side effects; I had to stay in the surgery for 30 minutes after the injection in case I went into shock (I didn’t) and that I may suffer from localised muscle loss in the injection site leaving a “dimple” (I did).

But when I woke up the next morning, and every morning after that for 2 months, I had NO hay-fever or asthma symptoms. To this day, after taking part in drugs trials and after 3 years of immunotherapy treatment, I can honestly say that this injection of Triamcinoclone was the only treatment I have ever had that worked. No symptoms at all.

Sadly, Kenalog as I understand, is not licenced for use to treat allergies and when I moved house and changed GP, I could not secure a prescription. Instead, I was referred for the immunotherapy treatment.

The reason I am writing about my experience is because Sir Bradley Wiggins used this drug under a TUE (Therapeutic Use Exemption) before he rode in the 2012 Tour de France. He is now accused of “abusing the TUE system to his advantage” and I was particularly incensed when I heard a previously banned cyclist talking on Radio 5 Live a few weeks ago (I can’t remember his name) criticising Bradley Wiggins’ use of this drug as a TUE. He inferred that Sir Bradley had abused the drug and cycling rules for a “minor illness.” Clearly he has never suffered or seen anyone suffer from severe hay-fever/asthma symptoms. I struggled to maintain any sort of normality in the summer months before I came across Kenalog, let alone take part in elite sport and the fact that Sir Bradley took this drug to enable him to take part at that particular time of year when the pollen count is particularly high, is no surprise. In fact, if his symptoms are so severe there is no way he could have taken part without it.

I would therefore like to know what experience the critics have of allergy-related illnesses and how they are treated. Do they understand what treatments do and don’t work?

I doubt it and I support Bradley Wiggins all the way.

Triamcinoclone provided him with the means to compete on a level playing field.

Go Bradley.

 

 

 

 

 

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Breakfast for supper

Breakfast Like A King copy

I need to lose weight. That’s a fact and after a year of almost total physical sloth I have gained more unwelcome padding. Doc Fraser is concerned about the weight gain because the more I weigh, the harder I have to work to lug myself around and this inevitably adds to the fatigue. You only have to try to carry a few kilos of potatoes across the car-park to know that carrying extra weight is hard work. The blubber has to go.

The problem with chronic fatigue syndrome is that you need to pace yourself carefully and to start with any exercise has to be gentle and low-impact.

“Delayed post-exertion malaise” is a common feature of chronic fatigue and is something I have suffered from for many years. When I feel good, I go into denial and exercise as “normal” but I am clearly a very slow learner or I am missing the Pavlov-Dog gene as I overlook the connection of overdoing activity with my crashes. This leads to prolonged periods when I am unable to do any form of exercise as I am exhausted, tearful, often bed-bound and severely depressed.

My new approach therefore is to lose weight primarily through healthy eating, moderating portion size and gentle exercise to help shift those stubborn pounds. Patience has never been my strongest feature but I am determined to be patient and not get disheartened if the weight comes off in pounds and halves. I will keep going, slowly but surely so that I develop a different lifestyle rather than adopt a short-term approach for a particular event. They say it takes about 66 days to form a habit so I will return to this post on 7 March to give you an update!

lose half a pound a week

In the meantime, my working and travel schedule is not conducive to a 3-meal-a-day regime and I am adapting my eating habits to fit in with healthy eating guidance and my long days. This week I am trying to follow the adage, “Breakfast like a King, lunch like a Prince and dinner like a pauper” so that instead of eating fruit for breakfast, I swap my meals around so that I have “breakfast” for dinner and eat my fruit on the train home. This serves two purposes as it means I eat only a snack in the evening, and furthermore, I am eating much earlier than if I wait until I get home at 8pm.

This will also help me with my insomnia as eating a large meal late at night can cause a sugar-surge a few hours later closely followed by a sugar-drop, which will not only wake me up, but also keep me awake.

Today, trying to swap some carbs for extra protein I stuck to scrambled eggs for breakfast, baked potato, baked beans and salad for lunch and fruit for my evening snack. I have to say that I don’t feel hungry so maybe this will work for me. it looks like this will work for me!

One swallow…

doesn’t make a summer.

After a positive day yesterday, today my mood is much subdued in comparison but instead of being negative I am treating it as a gentle reminder that recovery is going to take some time and is not going to happen overnight. Everyone has good days and bad days and this is perfectly normal. Today is one of those days, nothing more.

Having said that, I was really cheered up when I received a Get Well card from my colleagues closely followed by a lovely vase of flowers. They were perfectly timed and gave me a welcome boost this afternoon.

Get Well card and flowers from work

Get Well card and flowers from work

Tomorrow I must make the effort to get out even if it’s only for a couple of hours in the morning and I am looking forward to a long weekend when I can get out into the garden and perhaps hit a few balls at the golf range.

I’m digging my heels in and taking small steps but am definitely moving in the right direction.

Slow and steady wins the race!

online-depression-test

Foot loose

Reflexology_Richmond

I am determined to explore all avenues of healing to help shift this latest bout of depression and looking for a holistic solution I have booked myself a session of Reflexology treatment tomorrow afternoon. Over the years, I have had several Reflexology consultations and all of them have been beneficial in some way. I am therefore hopeful that tomorrow will be no different.

If nothing else 90 minutes of lying still combined with a foot “massage” will undoubtedly help to calm the nerves and sooth the senses.

I know the practitioner well and she has a very calming, soothing and reassuring manner which is just what I need at the moment. She knows me too and it won’t take her long to figure out what ails me! It will be interesting to see if she picks up on my recent kidney stones-my bet is that she does but  let’s wait and see.

The only drawback is that I will have to take hubby to work and have the car for the day. Driving makes me very tired at the moment and the Reflexology will undoubtedly do the same. But it will encourage me get out of the house , which I haven’t done today and it is very easy to get into the habit of staying at home all day every day.

Tomorrow I have to be out and about.

End of story.

richmond_reflexology

The aggregation of marginal gains

small-changesAnyone who was interested in last year’s London Olympics or in competitive cycling may be familiar with Sir David “Dave” Brailsford, British Cycling’s performance director and Team Sky principal. This is not a biopic of the man, but more a celebration of his ethos for a winning mentality and how we can transfer his formula for success to fighting depression.

I was reminded of his strategy by Sally, who applies the 10% rule to her recovery programme. I hope she doesn’t mind but I have included her thoughts here;

“The thought of getting better totally can just feel completely overwhelming, unrealistic and impossible.

But if I set myself the task of just feeling 10% better that somehow feels achievable – and is something to celebrate when you manage it.

10% is better than nothing … and all of those 10%s eventually add up…”

After GB’s amazing success in the Velodrome in 2012 Brailsford was quoted as follows;

It was attention to detail that gave us the advantage over the other teams. We considered everything, even the smallest improvements, to give us a competitive edge. It was the accumulation of these small details that made us unbeatable.”

This is what is known as the aggregation of marginal gains and you should never underestimate the power of small changes. Each and every small improvement adds up to a large impact and this is a great way to approach the changes which I am having to make whilst fighting my latest depression.

I will be making those changes, slowly but surely with the help of my GP, friends, family and colleagues and I will need a lot of help to keep me on track. My natural instinct is to be active and involved 24/7 but I need to rein in these tendencies and develop a calmer, more controlled way of life.

Mmm…..now that’s what I call a challenge.

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goalanddreamsquote_thumb

If the cap fits (2)

My previous post outlined my responses to some of the traits which are common to Empaths. Here is the second part of that response as promised.

Love of nature and animals: Being outdoors in nature is a must for Empaths and pets are an essential part of their life.

My garden is my pride and joy.

I love being outdoors in open space and fresh air. I hate being cooped up all day and this particularly cold and drab winter has been very difficult to cope with on occasions. Golf is great for me as long as I keep it non-competitive. It combines the outdoors, mastery of new skills and gentle exercise. I only wish I had more time for golf.

I have always had pets and can’t imagine a house without them, even if it’s a hamster sleeping away in the corner all day and only coming to life when I’m off to bed! Our pets give us an immense amount of pleasure and they are totally spoiled. If I won the lottery, my first purchase would be a nice house, with a huge garden and paddocks for lots of animals.

 Need for solitude

An absolute necessity and this is the main reason I am unable to work long hours. I need time to myself every day and if I don’t get this time, my mental health deteriorates very quickly. The consequences can be devastating. Getting home late from work, eating, then going straight to bed, having to get up again at 5am the following morning is not sustainable as there is no “me” time built-in for recovery. Some people can do this day in day out and take their mental health for granted. Sadly I can’t and without doubt, my career progress has suffered greatly over the years as I am limited to the amount of working hours I can do. This is something that has caused me much upset in the past but I am now reconciled to under-performing and not reaching my potential despite my best efforts. As someone once told me, sometimes doing just enough has to be enough.

Gets bored or distracted easily if not stimulated

Oh yes! I have a very low boredom threshold and love learning new skills. I have many and varied interests and those who read my blog regularly will know that this year I decided I wanted to learn to ice-skate at the tender age of 50!

Caroline finally masters backwards lemons

Intolerance to narcissism

I have no time for these people.

Feeling others emotions and taking them on as your own

The killer blow and something I was not aware of until 3 years ago.

It was in May 2010 that I admitted publicly that I suffer with depression and have done for many many years.

Why did I start my Blog-Part 1

Why did I start my Blog-Part 2

Following my admission and for the next 6 months I was inundated with people wanting to talk to me about their experiences of depression and I was only too pleased to be able to help. The only problem was that it wasn’t helping me and I didn’t realise that I was unconsciously absorbing much of their distress and taking it on board. This affected my mood badly and in November 2010 I was advised to take time off work to redress the balance. I quickly learned that if I wanted to keep helping others with depression, I needed to become more remote and detached from their feelings and whilst I could offer practical suggestions and advice how to cope, I couldn’t fight their battles for them.

Good advice but difficult to do if your natural instinct is telling you otherwise.

There are a good many other indicators to Empath “status” but they will have to wait until another day.

In the meantime I would be very interested to hear your thoughts and comments. This is new but fascinating territory for me and any and all views are welcome 🙂

If the cap fits (1)

Over the last couple of years I have often been asked the question “Are you an Empath?” and recently these questions have more frequently turned into the statement, “You are an Empath.” It sounds rather frightening and accusatory but largely due to ignorance and using my precious time to focus on other matters relating to my mental health (Mindfulness, guided meditation etc)  I hadn’t given this suggestion any more thought or consideration.Until yesterday I only had limited knowledge of what an Empath is, or what the implications of being one might be but being ordered to rest up following my diagnosis of kidney stones, infection and renal colic on Thursday, I took time yesterday to do some research. It was very interesting indeed and my responses to some of the traits of an Empath outlined below, might take some people by surprise. I actively manage my daily life to combat a lot of my anxieties so that they are not obvious to most of my family, friends or colleagues but this takes energy and forethought and can lead to extreme mental and physical fatigue at times.

So, here is my take on “Am I an Empath? and apologies in advance for the length of this post although I will write it in 2 posts……….. what do you think?

Most of the traits covered are taken from the Just Be Blog and Gary’s Phsychic Empath Blog and my thanks go to Just Be and Gary for the information.

Noise-empaths can be sensitive to noises which need not necessarily be loud, but may cause stress.

Playing my guitar

Playing my guitar

Loud noises certainly makes me cringe and I will avoid them at all cost. I love music and over the years have learned to play the piano, guitar and clarinet but despite this I find some music physically offensive. I will leave the room if I hear women’s soprano/opera singing which goes right through me and my hands are over my ears at the first warble. Free jazz sends me into a frenzy with all its jumbled up notes and rhythms. To me it’s just a mess. I hate the sound of emergency vehicle sirens and a baby crying makes me very tense and angry. My son Will didn’t cry much. I guess he’s an Empath too!

As a youngster, I remember going to 3 discos. I hated them all, not just because of the loud music but because the constantly flashing spinning strobe lights made me lose my balance and fall over.

All noises have a meaning or association and sometimes it is nice to go about my daily business without making those connections. Those are rare days indeed.

Being in public places can be overwhelming

I loathe shopping and tend to shop in one particular store for clothes and accessories as they open at 08.30am and I can pick up anything I need on my way to work when it is quiet and not crowded. I never shop at lunchtime unless I know that I am going to a niche outlet which is more likely to be quiet. My husband does the Saturday supermarket shopping and I avoid town centre shopping when possible.

I leave work at 5pm every day so that I can get to the train station in good time for when the train arrives. I need to get on the train and find a seat before the crowds arrive. If the train is late and the platform starts filling up with passengers, I can feel myself getting very anxious, my pulse rate increases and I get irritable. I move away from anyone who stands next to me and I will always search for some space further along the platform. In the past, when I have been waiting at a London station and there are hundreds of people waiting I have asked the train staff if I can board first just to get out-of-the-way. It’s not a case of getting a seat, I just need space.

Arriving early for a match

Arriving early for a match

I love football and am a lifelong fan of Aston Villa FC. Football stadiums get very crowded and can be overwhelming so I tend to arrive very early and find my seat before the rush. I then sit quietly and watch the stadium fill up without being caught up in the queues and general mayhem. Shuffling along in a slow-moving queue when I am squashed between bodies is claustrophobic and causes me great anxiety.

My husband is Iranian and our visits usually coincide with a wedding, engagement or other family occasion which is usually celebrated by a big gathering and party. I dread it. For most people it is a chance to let their hair down and enjoy themselves. For me it’s torture especially as I don’t want to offend anyone by leaving early. Iranians are great hosts and I am very conscious that I don’t want to seem rude. In the end, I have to offer my apologies and my husband has to escort me outside where there are no crowds and no loud music. On one occasion, a surgeon who was also at the party and saw my distress also came outside to make sure I was ok such was my urgency in leaving the room.  

Watching violence, cruelty or tragedy on the TV is unbearable.

Violence I can just about cope with as long as it’s not too graphic. Cruelty or tragedy are definite No-No’s. I can’t watch tragic films, news stories or documentaries and I would also add reading about such stories is not an option. For example, these are a handful of the books from my childhood that I have never read  because I can’t cope with the extreme emotions they would create;

Black Beauty

Tarka the Otter

Watership Down

I still have these books on my shelf from the 1970’s. My sister bought them for me and the dates are written in the fly cover. They remain treasured possessions but unread.

Digestive disorders and lower back problems

It seems that I am prone to stones! Exactly 9 years ago I was very ill with gall stones and had to have my gall bladder removed. This week I have been diagnosed with kidney stones, an infection and renal colic. When I had reflexology 2 years ago, potential digestive issues were highlighted as an area I need to be mindful of.  Need I say more.

Constant fatigue

I have learned how to control this much better over the years but it can still strike if I allow my self-preservation techniques to relapse. I have a number of books about ME on my bookshelf which date back to my glandular fever days and an initial diagnosis of post viral syndrome.

Addictive personality

It’s all or nothing I’m afraid! If it’s a glass, it has to be the whole bottle. One chocolate? No, it has to be the box.

Creative

Very.

To be continued…….