Wednesday, 18 March 2015

So I just keep going, the scenery never changing.

I have spent the last few years telling myself that IBD will not define me. It did before, I let it take over and I was damn sure I wasn’t going to let it again. It broke me and then it made me but right now I feel deflated and on the verge of breaking again.

I have never let it stop me doing what I want to do and I still don’t. If I am in pain I take pain meds and as long as I can physically stand and walk, no matter how many meds it takes to pull myself out of bed in a morning I will do it. I will go to work, I will do my shopping and pay my bills and look after my dogs and attempt to keep on top of the house work and sustain relationships with people I care about.

I will leave the house packed up to the eyeballs with emergency supplies for accidents and sore arses and pain relief because you never know when the pain is going to try and cripple you. I have done this for years and I still do it but it has come to a point where I feel like IBD does now define me rather than just live alongside me. I feel like all I am is my disease because it controls everything I do. It may not stop me but I always have to think ahead and prepare for what IBD might throw at me.

Everything that is in my diary is health related.  This month I have already attended two hospital appointments and a doctor’s appointment and I’m not done yet. The only thing I take time off work for is health related and I would much prefer to be off enjoying myself!

March 10th – Gynaecologist: Cervical erosion – book Cryocautery
March 12th – IBD nurse: Upped Loperamide, book flexi, bloods
March 13th – Doctors: Hydrocortisone and Diprobase for Psoriasis and antibiotics for acne
March 25th – Flexi sigmoidoscopy (camera up my arse for those of you not in the know)
March 28th – Belly Ball (yes, party, but again it’s all about IBD)
April 2nd – Northern general: Book procedure to discuss removing stitch, discuss pain – expect X-ray
July 14th – Cryocautery (freezing abnormal tissue of the cervix)

At some point (probably to fill my time between April 2nd and July 14th) I need to go back to have the stitches sorted and I assume another X-ray to find the cause of the pain in my side. My fingers are well and truly crossed that no Pouchitis is identified or I’ll need to start Imfliximab too.

My iron is low but no action is being taken. I am exhausted and when the iron gets bad I get dizzy and ‘thick’. I can’t even see straight sometimes and I fear walking in case I topple over.

I don’t talk because it’s pointless. Because no one can help. Because it makes people sad knowing that I am sad. Because I hate people trying to give me advice when I have already considered all options.

And what right do I have to complain when other people have it so much worse than me? I just look like a wimp.

So I just keep going, the scenery never changing. No end of the road to look forward to reaching. 

I feel like I am just surviving rather than living right now.

Sharing shit.

Ok. Let me try this sharing shit.

I'm really angry. I am tired ALL of the time. Like ridiculously. Like I feel stupid and like I can't function properly and like my brain is not engaged half of the time.

I thought long and hard about having my pouch reconnected and went and did it anyway back in November in the hope that it wouldn't flare again.

I have pains back in my side already that aren't even related to the Pouchitis; they were caused by my twisted intestine last time and are above the pouch. I'm confused. Surely it can't be twisted again!? It was odd that it had even happened the first time! I wonder if it is all in my head... but it's not. It can't be, I can feel it!

Since the last reversal my pouch has been 'ok'. The frequency has been more than normal but that's not too much of a bother but I keep having accidents at night. This is annoying as this also never happened with the pouch before. It's the same pouch for Christ's sake!

I had a cancer scare that caused me a lot of stress for weeks on end. I've seen the IBD nurse and she has upped my Loperamide in an attempt to stop the accidents, which seems to have worked but they are making me feel uncomfortable and bloated .

I have a flexi sigmoidoscopy booked in for next Wednesday to check for inflammation etc which I wasn't feeling when I saw the nurse last Thursday but now I am! I'm pretty uncomfortable at the minute... and again, angry.

My face has been/ is being stupid. Acne and psoriasis have been plaguing me! What are the chances that I would have a dry skin condition and greasy skin condition at the same time!! I hate my face! I've got new meds for the acne, new creams to calm the psoriasis and am finally seeing an improvement. But still... I hate my face.

I have an appointment to see the surgeon on April 2nd because I'm going to need them to cut my scar open and remove the stitches that are currently still poking out of it! I had this done twice before on the other side and whilst they are not poking out of the skin they are still just under the surface. I will speak to him about the pain in my side and expect to have to have barium xrays again at northern general. Northern general is a ball ache anyway because it's an hour away in the car and I don't drive so I'm always having to call on my dad to taxi me around.

So that's where I am.

I am fed up. If I have Pouchitis then Imfliximab is my only option left to try after exhausting all other medications.

It probably looks like I am making a mountain out of a mole hill but in my head I am completely exhausted and I just feel like the battle never ends. After 8 years with IBD I am now officially 'tired'.

That's all I got. I feel like that's all I am.

Tuesday, 10 March 2015

Time to tell the truth... And apologise

So here's the thing, recently I did something REALLY stupid...

So why am I telling you now?
Well that's because it's all over and I know that I am ok. Had the outcome been different I'm unsure whether I would be telling you at all.

People come to me and know that I can be trusted to the ends of the earth. People open up to me and I appreciate that. I really like being the person that my friends know that they can count on to always be there, listen and keep their secrets. I am more often than not the voice of reason and the one that will just tell you how it is.

For some reason though I seem to be incapable of doing the same thing. Opening up. Sharing my thoughts. Being supported and cared about. I barely talk about anything that matters normally and I think maybe I don't know how.

I don't feel fear very often. For 8 years I have been ill. I've had 6 operations, a miscarriage and a massively destructive relationship and in all that time, fear is not something that I've very often felt.

So imagine my surprise when I recently found myself really really scared!

I had a cervical and uterine cancer scare. Over the last few weeks I have attended multiple appointments and undergone numerous tests and the whole time I have not told one person about it.

Ordinarily I tell my mum every tiny aspect of my life but not this. I didn't just not tell her, I outright lied about it, as I have to all of my friends, family and work colleagues.


Maybe because I knew it was going to take a few weeks to go through everything and I didn't want people to worry. Maybe because I didn't want people to ask me how I am and have to admit that I am scared. Maybe because I didnt want people to constantly ask what is going on now and having to answer the same questions over and over again.

There were times when I tried to tell my mum, the day after my first appointment for example but a lump appeared in my throat and I just couldn't get the words out! Two days after that as I was planning on opening up, tears filled my eyes and I changed my mind.

The day after I was skyping a friend who has shared a lot of her journey with me and I thought maybe I could do it but I couldn't.

So many times its been on the tip of my tongue but it's just not come out and every time I failed I felt dissapointed in myself because I knew that I didn't need to go through it alone.

I roped the belly group admin into doing a #smearforsmear pic and at that moment they unknowingly made me feel supported. Not really because of the cause but because I asked them to do something with me/for me and they did.

So today I have the all clear, I've got a cervical ectropion which needs Cryocautery (freezing to destroy the abnormal tissue).
Clear is of course fantastic news but I am so angry with myself for being so stubborn that I didn't tell anybody. I am so angry that for the last 6 weeks I have gone through hell emotionally and not opened up to anybody when I know that I have people in my life that I could have spoken to! I am so angry at me and the way I always am.

Firstly, to the people who have sent me messages and got no response, I am sorry. There is really no excuse for my rudeness.

To my friends - I am really sorry I let you down. And I think (I hope) I've learnt my lesson! I'm sorry for being such a useless fuck wit and I'll try not to do it again.

I can't make a promise that I do not know I can keep but I can promise that I will try.

I will try with everything I have got to start letting people in.

I will try to share things with the people that care about me.