Is This A Turning Point?

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Where to start…… Ok, the last four years have been s**t. Really really! Illness, financial ruin, relationship breakdown, moving house…… Being a single parent with a chronic pain condition has been a tough road to travel.

One constant in my life for two and a half years has been my horse, Finlay. There is not a day goes by when I don’t feel privileged to have him in my life. The time I spend with him Im not a mum, single parent with a chronic pain condition. Im just me! The girl who started riding aged 6 and never stopped. Of course as a mum I feel blessed everyday that I have two healthy happy boys but my horse time is me time!

In July this year I appeared to be having less pain on a daily basis, it was still there but not as severe. Around this time I started wearing a magnetic bracelet. I had been taking tramadol everyday so maybe that was the reason but I really wanted to get off this drug. I had started to lose weight, being 20 lbs overweight, this was a good thing. When the weight loss started I began to feel better about myself, I had control of something for the first time in years. This feeling of achievement spurred me on to come off the tramadol, which I did.

One other reason to come of the drug was I would begin a 6 week course of treatment for my IC, one day a week at hospital. So I wanted to be drug free to access whether this treatment would make any difference. The more decisions I made the more confident I became. I took on a small cleaning job a couple hours a week, Id met new friends and Finlay’s yard, and even contacted someone who has IC and lives locally to me! It was great to chat to someone who completely understood what I have been going through for five years.

So now a couple of months on, I’ve lost 14lbs, my pain is at a lower level and my self esteem is much improved. I don’t feel as insecure and I’m actually quite liking myself again.

Last week I was approached to work part time for a local lady who has three dressage horses. At first I was really unsure. Could I do the job? Could I manage pain levels? Could I use my catheters at work? Could I fit the hours around my youngest son and my own horse commitments? After much deliberation and conversations with friends (ok I know its not life or death, just a job) I decided to give it a go! In fact I am going self employed, freelance! Its a bit scary but… feel the fear and do it anyway!

So many good things have happened in the last two months. Why now? Is it because I took control of one thing in my life (my weight) Is it that when you project positivity that’s what you attract? Is it just the cycle of life, like life’s patterns? They say life changes every seven years and just over 7 years ago I met my ex. Hmmm that makes a lot of sense! So 7 years on and I’m finally turning a corner on to a new path. Who knows where it will take me. x

Ps, last week got my hair done for the first time in 12 months AND went out for a drink with friends. Well, they’d been trying to get me to the pub for three years ūüôā x

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IC : Full Circle!

Next week I will start attending hospital once a week for treatment in the hope that this time around it will make a difference. This treatment as been tried before but as we have exhausted all other options apart from drastic measures like bladder reconstruction, its worth another try.

It does feel like Ive come full full circle right back to the beginning but the difference this time is that by using the catheters the bladder will actually be empty. I believe that all treatments failed previously because this important fact was missed. The bladder was not voiding sufficiently!

We all retain a certain amount for fluid, that’s very normal. But I was retaining up to 350mls! That’s very far from normal! So with the combination of drug therapy instilled into the bladder plus the bladder being properly empty maybe there is a chance that the pain will be less. Maybe!

The drug therapy is call Cystistat, I will have weekly instillations of this for 6 weeks in the hope that it will help to repair the damage to the lining of the bladder.

With IC you can only hope! x

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.