That Dark Lonely Place…..

That’s where I have been recently…

It is a very lonely place when you are burdened with a chronic pain condition. For the last six years I have suffered mine. Anger, despair, isolation, desperation….. but also acceptance. During the latter half of 2013 until August 2014 I had a period of normal pain. Normal pain is there every day, every morning and every night but it is manageable. I can just about function, be a mum, be a friend, be employed and enjoy my passion for all things equestrian. Life is ok, I feel blessed for my two healthy children, supportive friends, my handsome four legged boy. I can actually enjoy life.

Then the flare comes… August this year, out of the blue, no warning. Just bam! Here I am!! A big flare and the aint nothing you can do about it Im going to wreck your life for as long as I please! And so it did.

Until four days ago, as quickly as it arrived, it left. Sunday afternoon.. nothing special happening… no change in my day, what I’ve eaten, what I’ve drank….  nothing different to the last two and a half months…. its just left. Oddly I was at my breaking point the evening before. The lowest of my lows, many tears and desperately lonely.

So, four days on and I am very much hoping my body has recovered, that the inflammation has calmed. IC is a silent predator, I still have it, its still lurking in there. I can feel it every day. I still use six catheters a day…. should I dare to hope? Should I make plans? It could come back at any minute. This is my plan…. enjoy everyday. x

Is This A Turning Point?

Image

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 🙂 x

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 : Catheter Chaos

After the failed procedure at the and of last year I find myself at the mercy of the catheter. At first this was a painful tricky business, locating the urethra is not as straightforward for women. In fact most women don’t know where it is! Once located, inserting the catheter is at first very uncomfortable and brought me to tears every time but after a couple of days it did get easier.

The catheters are individually wrapped in sterile foil by squeezing the foil you release a extra sterilising fluid. Once opened the catheter must be inserted promptly and cleanly into the urethra. By cleanly I mean the catheter must not come into contact with anything else as this contaminates it and is unusable.

Once inserted the urine should flow freely.. or so you’d think. Sometimes the catheter becomes stuck to the wall of the bladder and the flow will stop. This makes you think your bladder is empty then half an hour later the pain worsens and its back to the bathroom to go through the whole palaver again.

I felt I had mastered the art of catheterising until last week. One day I found it difficult to push the catheter in, it did go in but was uncomfortable. Later that day I used another one which went in ok so thought nothing more of the original problem. Two days later I wake up feeling really unwell, so much pain. Using the catheter was very sore, not inside the bladder but in the urethra. Was is it just irritation or infection? Who knew! A few hours later I could hardly walk, my bladder felt full and painful and using the C (catheter) was awful!

I had antibiotics in the bathroom so decided on a three day blast to see if that helped. Along with some tramadol and my usual Atarax  …. 5 days later and Im slightly better. The fact that I sat in the saddle today lifted my spirits although I couldn’t really sit on my pelvic bones but by leaning forward slightly I could sit on my horse. I have increased my water intake (this is the only fluid I can actually drink) but that brings its own problems, filling the bladder quickly and increasing that particular pain….. no one said it was simple!

With the onset of the monthly cycle its one pain after another….. Life is a pain but life goes on.

 

Equines : The Show Season Begins

Three weeks ago I decided our first compeition would be a local Working Hunter show. At first I was excited at the thought of competing again, Ive done it since the age of thirteen and the start of each show season is something I look forward to but this year was different.

This year I had to factor in IC. Ive had it for years but after a failed procedure at the end of 2012 I am now using catheters. Not the easiest task at the best of times never mind in a show field portaloo! So, my initial excitement turned into anxiety. How was I going to cope away from home for the whole day?

Finlay the four legged is not the best traveller so show season has its trials and tribulations. But to his credit he always loads and gives his very best in the show ring. Thats why I love him, he finds some things in life a bit stressful but he still tries his heart out. His birthday was the 14th of March where he turned the grand old age of 12! But still acts like a four year old, another of his endearing qualities!

Saturday the 16th of March was Show day. Im one of those people who plan… every last detail, every last possible problem is thought through. I have to be meticulous these days to cope with IC although I do admit I have become a little OCD in my advancing years! So, Saturday morning was planned, how long to muck out, how long to groom, clean and plait Finlays mane and tail etc I had packed the lorry with tack and rugs the previous day to save time. I had my catheters and mirror (required to see) a packed lunch and a flask of coffee. All set to go!

Once Finlay was ready (horses always come first) I changed into my competition gear got him loaded onto the lorry and off we went. The first show of the season. I was apprehensive, not about the competion but how IC would affect the day.

We won our first class! Even though Finlay was very anxious he pulled it off in the ring, what a superstar. And the IC? I didnt think about it for a whole two hours!  

IC : Good Day Bad Day.

You never know when you wake up in the morning what kind of day lies ahead. Could be good or bad you wont know until you get there.

One thing  is certain I will always wake up in pain and today was no different. In fact today has been particularly bad, I ate something last night which is normally on my ‘safe’ list. I did notice that it tasted more spicey than usual and questioned whether I should eat it but I went ahead anyway. Big mistake!

I woke up at 7am this morning with pain levels at 7 ( levels go from 1 – 10) I used a catheter and went back to bed for an hour. Voiding the bladder does not take the pain away, it may ease for a while but Im never pain free.  By 9am I was in the bathroom again, another catheter. After taking my youngest to nursery I headed to the yard.

Id been at the stables for maybe an hour when the pain was becoming unbearable. There is a toilet at the yard but I didnt have any catheters with me so I tried the ‘conventional’ method of just going to the loo like normal people. Didnt really work, gave me some relief for about 30 mins but I knew I had to get home.

The afternoon was not much better. Now feeling exhausted and a bit sorry for myself. Ive done my usual comfort eating which only adds to my low self esteem. Oh dear, this is all a bit doom and gloom… tomorrrow will be better, wont it?.