IC : The Beginning

My youngest son was born on the 6th of March 2008, the day after my 39th birthday. Four months later was the start of the daily pain of IC.

In the July of 2008 I woke one morning with some abdominal discomfort, thinking it was a UTI (urinary tract infection) I called my GP for an appointment. Id had UTI’s or Cystitis a few times in the past so I knew the symptoms. I handed in a sample and my GP prescribed antibiotics. When over a week later my symptoms remained the same I spoke to my GP again, she arranged for me to see a continience nurse. Her thinking was that maybe my bladder was out of postion after pregnancy (four and a half years later I actually believe she was correct) But time passed and nothing changed.

In the September she refferred me to the Urology departemt at the local hospital. Well when I say local I mean, on the mainalnd. I lived on an Island off the west coast of Scotland at the time.

December 2008 I saw my consultant and he immediately booked me in for a Rigid Cystoscopy. This procedure is basically a small camera inserted into the bladder to aid diagnosis. By mid January my results were back and to my horror I was diagnosed with Interstitial Cystitis. I was really upset as I knew what  this ment. With information at our finger tips these days it very easy to research symptoms and Id read extensively about IC.

My consultant was optimistic and advised a 6 week course of Cystistat instilations to be done once a week at the hospital. This drug is supposed to calm the lining of the bladder and aid repair of the damaged area and for some sufferers it is successful. However for me it made very little difference.

IC is notoriously difficult to treat. Patients have different symptoms, triggers and react differently to treatments. So its a case to try it and see! The next step for me was Atarax (hyrodxine hydrochloride) 50mg at night. This drug was to help me sleep as it has sedatory effects and also ease the pain. The pain is always worse at night as the bladder fills and expands the pain increases often causing sleepless nights.

Through all of this I had a young baby at home and a partner who was unsympathetic. My relationship had been difficult for some time I knew he was lying and decieving me but I didnt have the strength to end it. But by june 2009 Id had enough.

So there it was… my life! I was 40 a single parent with one son at Uni the other only 15 months old,  with an incurable painful condition living very far away from any family or support.

My ex tried to come back a few times (this was his pattern in life) but by January 2010 my house was on the market and 11 months later I moved back to where I call home.  Im still in pain everyday, some worse than others and after a recent treatment ( 28th Dec 12) that was supposed to give me relief, I now find myself actually worse off than I was before. As I write this my pain level, which I gauge from 1-10 is at level 6.

I strongly advise anyone reading this who may have IC, if offered Botox  into the bladder to seriously discuss the possible outcomes with your Consultant. Ive lost faith in my Doctor now, he didnt fully explain the possibilities and now I have to use catheters to empty my bladder 4-6 times a day…. and the pain is still there.

Life’s a bit of a pain, but life goes on.

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Equines : My First Horse

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Following on from my first Equines blog we are now in 1982, Im 13 years old and the very proud owner of my first horse. Balgray Minstrel is my seven year old 15hh WHP.

I was quite tall for a 13 year old so there wasn’t much point in buying a pony, Peanuts, as he was known was the perfect first horse. I kept him at a farm just outside my village which was on the school bus route and everyday before and after school this is where you’d find me. Id get the early bus to the farm so I could feed muckout and turnout before I went to school and the same on the way home, the farm was always the first stop before I went home. I can still hear ‘You Cant Hurry Love’ by Phil Collins playing on the radio I had in my stable as I mucked out 🙂

Peanuts was a real gentleman, even my mother who is terrified of horses sat on him once! We would spend our days on long hacks through the village or down on the beach it was truely idyllic. As time passed and my confidence grew I knew competition was the next step and our very first time out was at Dundonald Show, an agricultural show not far from where I lived and I was taking part in the Chase-me-Charlie. For those who dont know what this is, its a one fence competition a bit like a puissance.

We came second and that was the start of my love of competing. Peanuts and I went on to win many rosettes over the next couple of years. First we focused on x-country, tearing round fields at top speed was great fun although I think my father went grey overnight! Or was that when I got my drivers licence?? Thats another story. Peanuts and I made for a winning team bringing home the top place at most events, he truely was a star! Our x-country finale came in the summer of 1983 when competing at a local event, we won individual and team (with friend Ann) x-country and I won the show jumping so was crowned overall champion. Think nobody like us after that!

My attention then turned to show jumping I registered with the BSJA (BS) Peanuts was a super jumper and we had great success but being only 15hh he found it hard making the distances so we didnt go any higher than Foxhunter. He really taught me so much and I loved him dearly even when we were last to leave the show ground everytime because he wouldnt load!!  

We had many adventures me and him, hacking to see my first boyfriend who live on a farm, playing hide and seek trying to catch him in the field, when Id turn up at his stable to find that he’d got his door off the hinges jumped out then jumped the five bar gate into the field. Being chased by poisioned delerious rats in his stable.. I’ll never forget when one ran over my foot urgh!

 

 

When Peanuts was sold he went to eventer Ian Starks yard, my little super star! But before he left he had been joined by Tec a 5year old 16.2hh IDxTB show jumper. I had just turned 15 and everything was about to change…

Equines: The Beginning

ImageI was no different from many young girls, horse daft! So aged six my father took me for lessons at the local riding school and that was the start of a life long passion. Although I suspect my father regretted that decision for some years to come!

My first regular riding school pony was 13.2hh Pedro, breeding unknown.  I was seven years old and spent every weekend at the riding school. Mum would pack me off at 9am with my flask of Heinz tomato soup along with corned beef sandwiches a penguin biscuit and a packet of crisps. Come rain hail or shine you would find me at the stables every weekend. We were a happy bunch of kids none of us has safety straps or body protectors or any of the fancy stuff kids have these days, the 70’s were just not like that!

Aged nine I moved to a different riding school where I met my first love, Peggy. This little 12.2hh palomino ball of fluff was as wild as the heather, not a great start to being a riding school pony! She was stubborn, difficult and mareish, she bucked everyone off….. everyone that is except me. I still have one of her shoes painted sliver. The only pony to get me off was Buttons, Buttons was not a popular pony and on the day we were having a bareback lesson I drew the short straw. During the lesson Buttons decided to have a fight with the pony behind this resulted in me being thrown off underneath the feet of the fighting ponies. Lying there with my hands over my head not one hoof touched me, was that luck or the instictive nature that a horse wouldn’t hurt me on purpose?

I have such fond memories of my years at that riding school including the mini pick-up loaded with 8 saddles, bridles, feed buckets, plus 5 kids. Where was health and safety back then? We used to hang out the back of this pick-up whilst it was moving and steal road traffic cones! handy things for a riding school. But as time passed that summer the cones got heavier and heavier. We had been reported and now the council filled the cones with sand… oh those were the days.

At the age of 13 and after three years of working every weekend and every holiday to earn a weekly lesson I was desperate for my own pony. I pestered my Dad a lot but he remained stead fast in his denial of my dream pony. Id pretty much given up and decided a hamster would suffice. Hmmm…To this day I have no idea why I wanted one so asked my father if I could have one, his reply was how about a horse instead!

That was just the beginning…..

Life’s a bit of a Pain.

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Four and a half years ago I was diagnosed with IC (Interstitial Cystitis) This condition often goes misdiagnosed with GP’s suspecting Cystitis then prescribing antibiotics. Cystitis is of course treated with antibiotics but Interstitial Cystitis is not bacterial its actual damage to the lining of the bladder. This lining protects the bladder from acidity in the urine so when its damaged the unrine inrritates the wall of the bladder inducing pain, frequency and urgencey to empty the bladder.

Urologists do not know what triggers the damaged bladder lining, they basically don’t know why some women and men, have this condition. IC is not a fatal therefore funding for research is limited however in the US where the health system is a billion dollar industry there does appear to be more information available. But still no cure.

After my diagnoses I recieved weekly instilations of Cystistat for 8 weeks. This is a procedure where the Cystistat is instilled into the bladder via catheter, its purpose is to repair the damaged areas. But unfortunately, like so many other, this was unsuccessful. Next option was Atarax (Hydroxine Hydrochloride) 50mg at night. This helped me sleep at night but has done very little to eased the daily pain. Four years on I am still staking this drug.

IC is a complicated and a very individual condition. Every sufferer has different symptoms and triggers. Some have pain only, or frequency only etc.. what drug or treatments that work for some won’t work for others. For me the pain has been the most difficult to cope with. Every morning for over four years I have woken up in pain and you’d think that by emptying the bladder the pain would eas but this is not the case. The pain and irritation can continue all day some days worse than others.

Tiggers, well I could write a whole book on this subject. Again everyone is a little different with triggers. But generally speaking anthing citrus, acidic, caffinated, carbonated, alcoholic and high in potassium. When you think about those catagories it actually covers a wide range of food and drinks. I mainly drink bottled water with a neutral Ph. Occaisionally I will have a decaf coffee with lots of milk but  thats about it. Milk is fine to drink but not one of my favourites. Sticking to natural sugars is important too, no artificial sweetners. One other major trigger for me is hormones. Flucuating hormones around ovulation and menstruation are what I can only describe as horrendous.

Even though I follow and IC diet I still have daily pain it can vary from day to day but every morning without fail I will wake up in pain. This has a huge effect on mental health and when having a bad flare (of IC) can make one question how long this can be tolerated. Many IC sufferes are also taking anti depressants.

IC also effects physical activites which for me, as someone who has alsway been very active has a huge effect on my life. Most strenuous exercise will cause a flare and for me that includes swimming. The pressure of the water around my body seems to increase my pain levels. I have however always ridden horses and thankfully never really had too many problems, up until recently but more about that later. So jogging cycling aerobic and gym exercises are very challenging for IC sufferes.

Ive only touch the surface of this subject, IC is  life long condition. There is no cure, only management. Life’s a bit of a pain, but life goes on.  

The Rest of Us

056The rest of the family are me and my two sons. My boys are 21 and 4 years old, yes big age gap, sometimes life happens that way. The eldest is at Unversity and the youngest will start school this year. They are both wonderful kids, very different personalities but share a strong bond despite the age gap.

Then there’s me, 43 years young and a single parent. Being a single parent doesn’t define me but its does thow up obstacles now and then. Many of us are struggling in these economic times and being single with a family is challenging. However I wouldnt have it any other way.. my kids dogs and horses make for a happy life.

The last and sometimes most influential member of my family is called IC. Not many people have heard of this condition, its not visable to the naked eye its gives no external signs of the havoc it wreaks within my body. Interstitial Cystitis is a silent predator lurking inside the bladder. It gives no warning of its intentions, at anytime any where the debilitating pain will strike.

I hope to talk more of this, my life my family and my journey with IC.

The Canines

113We’ve always had dogs in our family. My childhood dog was Kimmy, a heinz variety who ran about on three legs the most of her life. Then there was Meg a boarder collie who aged 7mths would jump the garden wall to round up the farmers sheep, that was before he actually arrived. Clever dog!

On leaving home at the age of Sixteen I aquired/rescued numerous waifs and strays. German Shepherds and Jack Russells mostly, all much loved and sadly missed.

Fast forward to 2013 and we have two Jack Russells in residence. The eldest Lucky (another rescue) is 13, grumpy and smells a lot. The youngest Pippa is 12mths, hyper and still smells of puppy.

I have a hoover you know. Its used daily. Its emptied daily… of dog hair. Little short white dog hairs, the kind that stick into everything and can even be found in the sugar bowl. It is normal in our house to find the odd dog hair in your morning porridge.

Wouldnt be without them.