Sunday 10th April 2016

This week has been a week I'd rather forget. It has been awful so much so I would rather fall off Hamish (the pony I was riding last Saturday) again then deal with this pain. 

The stomach pain began at the beginning of the week but of course when you have Crohn's pain in your stomach is certainly not an unusual thing. Through the week the pain has been getting progressively worse to the point that the maximum paracetamol and dihydrocodiene dose isn't helping. It's low down central pain and in a normal woman's body this would mean that it's probably woman related issues but with my small bowel dropping down into my pelvis it could be my bowel or it could be something really simple like a UTI, oh how I wish things could just be straight forward. As well as the pain I haven't been able to get my temperature under 37C, I have felt sick and had really bad acid reflux.

I know that I should have phoned the doctor and this weekend I seriously contemplated phoning the out of hours but I know they will probably admit me because there is nothing they can really do and that's what is stopping me from going. I cannot get over my fear of hospitals which is going to become a major issue. 


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It's been a long time

Well hello there, it's been a long time since I last posted and if you follow me on twitter you will know why there hasn't been a one.

Let's start at the beginning. On Friday the 12th of February my mum slipped on black ice and broke her tibial plateau (the tibial plateau is a critical weight-bearing area located on the upper extremity of the tibia) in her left leg so these last few months have been very hard for me and the rest of my family, especially my dad. Due to where my mum broke her leg it meant that she needed to have surgery to have a plate and screws puy in and she was not allowed to weight bear on her left for 6 weeks. With everything that has happened my mental and physical health has taken a battering and I just haven't been able to write posts as my brain has felt in a permanent daze and any time I have attempted to write a post they just haven't made any sense, to be honest I am not sure if I really want a reminder of these last couple months. 

In other news I have finally got a date to go into hospital to get all my teeth removed, I have had to wait 7 months for this date which frankly is absolutely ridiculous. At first my teeth weren't really that sore so I wasn't that fussed but in the middle of February I started to develop horrendous pain and my head felt like it was in a vice. Despite taking maximum doses of paracetamol and dihydrocodiene the pain would just not ease at all in the end the only thing that would help with the pain was anitbiotics. I am really nervous about getting this op done as every surgery I have had before has ended with me having wounds that open up and infections.

So lets get on to the good news and that is I started horse riding again!!!!!! I use to ride every week until I was diagnosed with Crohn's 16 years ago and since then I have only had the odd lesson here and there but this year I made the decision to ride as much as I possibly can despite the Crohn's, pelvic pain, fatigue and dysphagia. The riding lesson haven't certainly haven't been easy, every time I have a 1 hour lesson I come home and sleep for 5-7 hours. I do suffer with pain and dehydration but it is worth it because I have finally found something that helps with my well-being and every time I get on the horse I forget about all the crap that is happening plus it's great to be spending time with such beautiful animals.

That is all for today's post and once again I am sorry for not posting for such a long time, until my next post remember to keep strong and keep fighting. xx


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Friday 29th January 2016

This has been a really tough month for me, I have not been able to shake the depression at all but I refuse to go to the doctor. I know that I should probably go but I am not feeling suicidal plus all they will want to do is change the anti-depressants that I am on and they will want me to go and talk to someone which I have done numerous times before and it is a complete waste of time. Another thing is I find that anti-depressants aren't really the solution because they come with their own side effects that can just be as bad as the depression. 

If the depression wasn't bad enough I have been noticing that my Crohn's has been getting worse. I am getting pain in areas that I never normally get and my appetite isn't as good either which is a really bad situation because I honestly don't eat enough as it is. Also the fatigue and brain fog has been getting worse but that's no surprise seeing as I still haven't been able to get my iron infusion due to not getting my portacath.

This month I made the decision to book myself a horse riding lesson. Before I got sick I went for riding lessons every week and it was my dream to have my own horse, take part in competitions and teach other people to ride. I had hoped to start riding again after my first ostomy and rectum removel surgery but that didn't happen due to the large rectal wound that I developed because the stupid thing decided to burst open 2 weeks after surgery. It has now been nearly  2 years since I had the final surgery to close the wound completely and touch wood everything has been fine since so I thought now is the time to start riding again. I also thought that going back to something I love will help with my depression, anxiety and agrophobia seeing as nothing else seems to be working at the moment. 

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Sunday 3rd January 2016

Just call me the New Year Scrooge. Words cannot describe how much I hate New Year!!!!!! I just don't see the point of it, maybe I would think differently if I didn't have all the health problems that I do. 

A new year is suppose to equal a fresh start but the start of a new year doesn't mean that all the shit that you were going through last year miraculously disappears when the clock strikes 12. Maybe I wouldn't be feeling this bad if I didn't have a small bowel study MRI book for the 8th of January. I am seriously dreading it because the last time I had one of these done it was an absolute nightmare. 

If having depression wasn't bad enough my guts have been playing up since boxing day. I am having pain in a different area to where I normally do and my ostomy seems to be really sluggish for some reason which is very unusual for my bowels. I am one of these people that has to take loperamide/imodium 4 times a day and even then I still have a high ostomy output. As well as the bowels my chest has decided that it wants to act up as well, I should be grateful though as it's been a long time since I had inflammation in my chest wall. 

The only good thing about these health problems is I have discovered a new tv show called Sons of Anarchey. There is 7 seasons on Netflix so that will keep be busy or should I say distract me from my demons for a while. 

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Sunday 27th December 2015

Christmas didn't exactly go how I wanted it too but I did make the best of it. If there is one thing I am good at then that is making the best of it.

So every year I normally dress up, do my hair and makeup but this year I just stayed in my Christmas pyjamas because I knew that I would have to take a couple of naps during the day. I received lots of lovely gifts from my family this year but my favourite one out of all of them was a Me To You bauble with Daughter With Love on it from my parents.

Everybody seemed to like the gifts that I gave them thank goodness. Every year I get worried and stressed out about gift shopping, when I ask people what they want for their Christmas they say they don't know and then there is also having to make sure that each persons gift comes to the same amount as everyone else.

This year my oeophageal stricture's allowed me to have Christmas dinner with the rest of my family. Turkey, sage and onion stuffing, pigs in blankets, potatoes, cranberry sauce and gravy puree really well so much so that I didn't have to add extra water (typically I have to add extra water to get the food to a smooth consistany). Unfortunatly I did have an issue on Boxing Day with the leftovers because I added way to much gravy and ended up with Christmas dinner soup. 

Chistmas evening was spent like it has been for the last few years, every year I have a nap after and then spend the evening in front of the tv and watch the Dr Who, Call the Midwife and Mrs Brown's Boys. 

So all in all this years Christmas has been a good one. 


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Thursday 24th December 2015

So all the plans that I mentioned in my last post didn't really happen thanks to the stupid fatigue. 

The fatigue wouldn't have been this bad if they hadn't cancelled my damn portacath procedure. If I got the port I would have received the much needed iron infusion, my energy levels would have been better and I could have done everything that I wanted to do. There was an incident that happened this week that could have had serious consequences and it was all due to me falling asleep because I was so tired. This week wasn't a complete bust though I did manage to make Christmas biscuits with my sister who has Down's Syndrome and wrap my Christmas presents

One of the worst things about me is I am my own worst enemy. I set myself unrealistic goals and then get so mad at myself when I don't achieve those goals. I may have been chronically ill for 16 years now but sometimes I still struggle to admit to being a sick person. 



Previous post: Sunday 20th December

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Sunday 20th December 2015

Well what can I say it's been a very long time since I last wrote an there has been so many reasons for that but those things are in the past and it's time to start a fresh.

So this weekend as been all about me putting my feet up and catching up on some much needed sleep because this coming week is Christmas week and that equals crazy week. My plans for this week so far are to make meatball stroganoff, fruity biscotti, gingerbread cupcakes with salted caramel icing, Christmas biscuits and to wrap all my presents. I know that I am biting off way more then I can chew with all this but I made a decision way back in 2010 to go all out for all of my favourite holiday's after being told in 2009 that I might not see Christmas. 

My plan is to make the meatball stroganoff on Monday and also go to Pet's at Home to get the last few things for this years Christmas donation to the Cat's Protection. Then from Tuesday to Thursday I plan to bake once a day and wrap some presents, my hope is that by doing this my body has to time to relax each day and maybe it won't have a total utter melt down. 


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Thursday 27th August 2015

Today I reached my breaking point and I couldn't do anymore physical things. My stomach, chest, back, arms and legs are all sore, I am so tired that I can't think straight and I can't go to the bathroom to pass urine because I am so dehydrated. I am trying to keep my mental health in check but it's hard when I feel like this. I just have to keep focused on the end goal, a brand new house in a place that I love to live and no more having to share a bathroom with 3 other people and if you are person with health issues that require you to use the bathroom a lot then you will understand how excited I am about this. 

Somebody asked me today if I was feeling sad about leaving this house and my honest answer is not really. The only thing that I am sad about is I won't have my good friends staying directly across the road from me. When we moved to this house I was 9 and my friends were 3 and 5, we have grown up together and the older we have gotten the closer we have grown because as you get older age difference doesn't really matter. With them living across the road I always knew that if I ever needed anything I could just pop across to their house and ask. Even though they are not going to be living across the road they live less then 5 minutes away.

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Tuesday 25th August 2015

I can't wait for this move to be over because I am now reaching my breaking point, I was struggling with fatigue before all this started but now it is the worst it has ever been. I am getting to sleep at night but when I wake up in the morning I feel like I haven't slept in days. I was suppose to go to the British Touring Cars at Knockhill this past Sunday but I made the decision not to go and as much as I HATED not going I know I made the right choice as a 17 hour day on top of everything that's going on I would probably have landed me in the hospital.

Even though I have a deadline to meet I am making sure to take some down time by reading a book and watching my favourite dvd's, Star Trek The Original Series. Something I have learnt over the past 15 years is that pushing yourself too much lands you in big trouble. 

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Monday 8th June 2015

I am absolutely exhausted x 2, my parents were away from Saturday until today so that meant I was looking after my younger sister with Down's Syndrome and of course I had Miss Snowball the cat to look after too. I don't mind looking after my sister but every time I seem to look after her I am finding it more tiring, I really hope that this is just a sign of worsening anaemia and not something that is going to become permanent because that is going to be a serious issue.

Over the weekend I also developed this horrendous toothache or should I say root ache because that's all I have left of my top front teeth. The pain wasn't that bad on Saturday and it cleared up after one dose of paracetamol but I woke up in the early hours of Sunday morning in terrible pain and despite taking the maximum of dose of pain meds the pain is still there. I think it must be over a month now since I asked my dentist to refer me to the maxillofacial department to get these roots removed at the hospital but I haven't heard anything from either of them but that's not unusual when it comes to the National Health Service.


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