I have begun my blog to raise awareness to the chronic disease Endometriosis. I would like my blog to be a source of information on all aspects of this disease - whether that be surgery, treatment or the day-to-day aspects of living with this condition. I have created a Video Blog to work along side this to discuss a whole variety of issues.

Wednesday 15 May 2013

A change of tactics...

In order for me to be able to handle my endo, cope with my developed disability and inability to work; I have embarked on a series of emotional support therapies to allow me to become emotionally stronger. Imperative I believe to continuing to fight endo and deal with it in a day to day basis.

It has been 15 years now that I have been fighting endo, and 10 years that I have had a diagnosis. A term which may sound long to some, or indeed short to others. Throughout this time my emotions have gone through every possible avenue. They have been up, down, nocholant or at the point of despair. I have always felt it easier to face endo head on, when my mental health and emotional wellbeing is stronger. When I feel stronger in myself and more able to cope... I cope and I fight and I persevere...

The support that I am now receiving I feel I very much needed and will get me back to the point of wanting to fight endo, and feeling like I can. Also without it mentally exhausting me. So far I have been looking at positive self and developing a better opinion of myself. Also looking at mind and body and how I can use relaxation techniques, breathing techniques to calm down especially when in pain. I have also started looking at Chi Gung, which is a form of Tai Chi that has been adapted for my physical disposition. I am able to do this seated and a range of movements that will help with increasing the movement I have lost and focusing by body as a whole.

I think that by the end of this therapy or actually as it continues I will find a renewed focus and a better ability to manage endo and the struggles that it brings. I shall remain hopeful as ever.


Sunday 12 May 2013

So much going on!!

What a busy busy little bee this endo fighter has been of late!! I seem to be living at the hospital at the moment... Alas, I had two admissions over the last two months, not the best of situations... And I have had many an appointment since then. But things are moving in a steady direction, it's always good to see things moving.

My heart problem has been fully investigated... It is called a QT defect, which is around the electrical pulses of the heart... Making it double beat. So it beats too fast overall. Some of my meds were making this defect worse. So I have had a total overhaul of my meds. The only thing that has remained is my Naproxen and my Provera. Morphine is now has a twice daily appearance in my army of meds. Took some getting used too. But it is nicely settled in my system now. :-)

Over the next two weeks, I see my bowel surgeon, my gynae and my cardiologist! There really is no rest for the wicked. I think I should have a permenant car park space at the hospital!! Lol. 

Lots and lots to look forward too... Gosh it is exhausting thinking about it!! X

Wednesday 3 April 2013

It's been a while...

It's been a while since I last posted... I seem to have lost my flow, in all aspects really not just my blogging. Definitely out of sync.
Well it has been all go for me recently. Been having lots of tests and examinations, in order to prep for my surgeries this summer. So far I have had an MRI, a barium X-ray, having a sigmoidoscopy in three days and lots of poking and prodding. All the results will be back for Tuesday next week. So I am actually looking forward to seeing my team and getting a grip on some of all of this.
I have been suffering terribly with my legs and hips of late. Temp paralysis in my right leg, permanent numbness. I've had it for a while but has gradually been getting worse. And the stick has come out once again. I surprised I am still in as mic pain as I am. As my meds have been increased. But I really do not feel the difference as yet... I need to keep fingers crossed!!
At least having the MRI results back will give me a better idea of what has happened to my hips and my legs. Lots of things to look forward too!!

Monday 14 January 2013

A little note...

I am currently going to town on my exercise regime!! And I had stated to lose some weight... Seems a little bit stagnant at the moment, but I am hopeful that things will kick back in soon!!

I am to visit my new surgeon this week.. To discuss my bowel surgeries and how and when this is all going to happen... Not quite sure what to expect and I am a little sad about leaving my old consultant behind. He had been very good to me and I have been with him for about 4 years now and definitely the best one I have had. Fingers crossed that my new specialist will be just as good. The relationship between consult and patient is so very important. I want it to work out well.

I will update you all on what happens on Wednesday.


Saturday 5 January 2013

Exercise... A doctors recommendation

Doctors always say that you need to exercise when you have Endo... That it will really help you... Now this is something that of course depends on how you feel. If I am rolling around on the floor in agony or totally bed bound, the entire notion of exercise is insane!! Some doctors don't look at the state that you are in when they tell you this. When you are struggling to walk - there is no way that I am going to exercise!!
However, when I am mobile and the hug cocktail of pain medication works I go to the gym. I push my so much to do the best that I can and to work through the pain. I love the feeling I have after!! Totally buzzing on endorphins! The worlds best high ever.
The only issue is, that I know my pain levels will shoot through the roof later. I love to exercise, but Endo really doesn't like it at all. But I must persevere and push through as best as I can. I will make the most of being able to exercise when I can. As the next flare in invariably cripple me for a few days as it always does!! Fingers crossed it won't happen just yet.
Xx xx

Wednesday 2 January 2013

Weight issues:

Right... Well I went to see the doctor this week as I am concerned about the effects that all these meds have been having on my body. In relation to my weight. For the last 2 years I have been on many many hormone therapies. Pretty much back to back, with a six month break following my op in June, after being on the lovely zolly.

In the last two years I have out on 20kg!! An amount that I am shocked about. And it is depressing the hell out of me!! I was last weighed 2 years ago wen I had "recovered" from my anorexia, so they had my weight on file. I had finally got j to the healthy bracket... And now I am way into the overweight category!! If I had been sat there gorging myself for two years I would have understood, but in all honesty I have one of the healthiest diets of everyone I know, I still train and swim and still the weight continues to go up and up. The respite from exercise I had was when I was in physio, teaching myself to walk properly again after some major never damage in surgery, but even during then I still had physio exercises to do three times a day. I have hardly been sedentary. I walk everywhere too.

All in all the docs said that this is happening because of my meds, and there is little that can be done. Except increase my exercise.. Considering I am going to the gym 4 times a week for 2 hours a time... I now have to go more!!

Now not being defeatist... But with Endo my being able to go 4 times a week is a bloody miracle and my body cries out for the rest days as it is... How on earth will I manage 6!!! Lord only knows.

Today however I weighed myself and I have lost 4kg, which I am amazed and surprised about (I haven't started the 6 times a week yet) I am wondering what has caused this dramatic loss... I am hoping that this is the start of things. It's killing me being the size I am, and I want to lose these 20kg if it kills me!!

No one really explains to you the real impact all these meds have on your body, it's not fully detailed out to you at all... If it was, would we want to take anything at all... To be honest, I probably wouldn't take anything!!


Thursday 20 December 2012

Provera... Again...

Well... I don't really know what to write about today. But I wanted to write nonetheless. I am about 6-8 weeks into my new course of Provera... (Again) but on a higher dosage. And my goodness some of the side effects are very apparent already!! My appetite is very up and down at present... Sometimes I don't want to eat at all, then I can eat and eat and never seem to be full... More of a binge eat!! Lol. I don't eat obscene amounts of food, but a large amount for me I guess. Also having a major spurt in the chest department!! And that is something I really didn't need in the slightest!! Lol. Already being an e/f cup... I have now jumped up to a g cup! And still only on a 34 back. So as you can imagine, I am terribly too heavy at the moment. I am hoping I don't increase any further, as I fear that my small stature of 5ft3" will not take anymore, and I will collapse under the weight of my chest!!
One of the other side effects, is an effect on ones sleeping pattern. And this I am definitely noticing. I have suffered terribly with my sleep for years. And whenever there is a med I take that can have an adverse affect on sleep, I am pretty much guaranteed to get it. I don't even read the side effects anymore, until I start to notice things. Like sleep, appetite for example. And then I investigate them. I don't want to put all the side effects in my head and then psychosomatically develop those side effects.

At least the first few weeks are out of the way which are generally the hardest with a new med. once adjusted into my system fully, things should be alright. Fingers crossed!!