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.

Friday 23 March 2012

Fighting the fight...

There are definitely some days which are easy to deal with and those that are not... And this week has definitely been a combination of the two!
I generally pride myself on being strong and being mostly able to cope with all that is thrown at me... However we do all have our weaker moments and those times where we feel very low and very alone. I am under no misapprehension that this is purely down to my endo and I also know that I am not exclusively alone in how I feel.

This week for some reason that I am yet to discover, those daily things that are generally such a walk in the park for me have felt like I am climbing a never ending mountain. I have felt very low and indeed very emotional. There have been moments where all I can do is cry at the hand I have dealt and where my usual sense of strength and of coping have simply disappeared.
Today however I have woken up feeling a little bit more like my old self. I little bit of drive and spark is back today. I am thankful to see it return.

It is very easy with endo so sit there and cry and curse the world for all you are dealing with, it is very hard to face it all head on and still continue to carry on and to fight.

Fight, is my goal and fight is what gets me through this illness. My fighting spirit is what has led me to create this blog, what has led me to create these information videos. I want to help others suffering as I am and raise awareness for this condition. My fight is back and so I am now back onto my mission!

I know that there will always be those days where I feel like giving up... I guess for me the thing to do is embrace those days have them and then move onto the next. The feelings of hurt, anxiety and loneliness will always be apparent with this disease, I will however not allow them to control me. I will not let this disease dictate how I feel every day. This disease commands to much attention already. I will not give into it implicitly.

So for now, my fight has resumed. My next video has been completed and will be up in running in a moment. From here on I will resolve to let the dark days come, deal with them and move on... My spirit is tougher than that!

A
xx  

Tuesday 20 March 2012

Daily Mail Article:

A great article. Make a change to actually see some space given to Endometriosis!!

http://www.dailymail.co.uk/health/article-2117325/Why-seriously-ill-women-misdiagnosed-IBS-GPs-mix-endometriosis-Crohns-cancer-.html

Benefits and Physio:

Well... What an eventful week it had been

I have had my ESA application accepted. Which is of great relief! My SSP from work ran out on the 15th March, so from them I would be receiving nothing from my employer until I return to work.

The ESA has been approved and I have to go for an assessment at some point to determine the level I receive and whether or not I will be given disability living allowance.

It would be very useful if I can... As then I could increase my physiotherapy on my back and my spine and hopefully gain more movement without being in total agony the next day!!

My physio has been going quiet well. Into my third week now. My mobility is getting much better. In terms of the stick usage is less... But my goodness it hurts so very very much! My back is so stiff and sore. Along with my hips locking in position. It's not fun.

I have been given more exercises to do... Which are very much Pilates based. So I do enjoy these very much indeed... Trying to find my yoga mat though... Which seems to have disappeared!! Grrrr!!

I'm still taking my strong meds for my back as the inflammation is still very much there... But at least I can see the benefits of everything a little bit more.

Here is hoping for another good week!!

Andrea. X x

Saturday 10 March 2012

The Endo Diet,

I don't know if any of you have ever tried the Endo diet, or even heard about it... But I have been doing it for about a week now.

When I first heard about the endo diet... I was very unsure and unclear as to what it is, or indeed how it will help me with my endo and all of my pain. However, I am willing to try anything at the moment... and if it is said to help some - then I am there to try!!

Well, the diet itself is very restrictive. There is an awful lot of foods that will contribute to the pain. But I have been sensible with it. I am gradually breaking myself into it. So as to make the process easier and hopefully stop me from falling off the wagon with it so to speak!!

This week I have removed my Pasta, white bread and white rice. Which was relatively easy. I mainly eat Brown rice anyway. Removing pasta long term I know will be hard... and already I am missing my freshly baked white bread. I have also removed the red meat part of my diet - this was easy as I am not one to eat much in the way of red meat. I will continue to eat chicken and fish.
I have increased my consumptions of fruit and veg and pulses. I love fruit and veg any way so that part was easy I have just been increasing pulses, kidney beans etc... in replacement of potatoes and bread - where needed. I am also cutting down on the refined sugar aspects... my sweets!! Which since being off sick has been my go to release.. so this is going to reduce week by week. Not that I ate huge amounts of them... but it is still best to remove. I do miss honey in my chamomile and lemon tea though. I have also removed convenience food. So the TV dinners and things like that. All my food is being made by me from here.

Already with these changes to my diet, I feel less bloated and swollen. I know this is probably down to the heavy carbs removal... but I do feel less heavy so to speak. I know it has only been a week, but if i notice differences only a week in then surely I can notice more results the longer I keep at it.

Being an ex gymnast and a gym freak! I have always thought carefully about what I eat, but even I will need to make many changes too my diet. This is why for me it is best to make the changes gradually. I am hoping that over time I am going to experience less pain and less swelling etc... All the time I am on Zoladex my weight is increasing even eating less. So if I manage to lose weight great... but that is not my main resolve. Getting my body able to battle with endo through the fuel I give it, is my main objective.

I am making sure I eat regularly and actually take the time out to prepare my food and sit down and eat, it does feel like I am eating more than usual with this. But what I am eating is better for me. Caffeine has already been removed from my diet  i did that months ago and I am so much better off without it...

So here is to another week... Fingers crossed!!

xxx

Friday 9 March 2012

Physio Session 1:

Well, I had my first physio session yesterday and have a lot more info as to what has been the issue with my back. Also as to why my bowels keep shutting down.
Basically the the muscles in my back have seized, locked tight and have pretty much stopped working. I also have some nerve damage from my Endo, and my surgeries.

All of the muscles are so tight it is that that is making mobility and general movement so hard. But things can be eased and hopefully back to being fully functional again.
Where the muscles in my lower back have been not working this is what has cause my digestive tract to be so slow or stop fully, as the muscles have not been working to move things along. Resulting in shut down. This is why I was having to take so many laxatives every day.

The nerve issues is what is causing my lack of sensation in my back, bum cheek, thigh, leg and foot. Some have got trapped within these muscles and some are more on the damaged side.

I am going to need about 8-12 weeks of therapy to get things going again. I have exercises I must do at home 3 times a day. Within my pain threshold to start and then over the coming weeks - will go through my pain threshold to build them up and make them stronger.

My physio was really very good and explained everything so well. I am really lucky. He will also do some deep tissue work next week to aid the loosening of the muscles... I know that is really going to hurt! But I also know it will help.

The main reason for this happening is down to my Endo it seems... all the inflammation and being hospital so much, being laid up seems to have had this effect.

Well at least I finally have an understanding of what is going on... and if I stick to my plans as given, I should see the benefits gradually. I know I am a bad patient generally and I do expect recovery quick and I tend to push myself to recovery quicker than I should - but I must be careful with this. I don't want to cause any more damage or anything that this going to cause long term pain. I will always have some nerve trouble. Alas, once that has gone, it is pretty much gone... But mobility will be returned!! and the walking stick will be banished!!

So all in all a pleasing day... if somewhat exhausting!! xxx

Wednesday 7 March 2012

A mad week!

Its been a few days now since I was last on here... Last week was such an emotional week I can't believe I managed to get through it all!!

I was in urgent care on Monday with my back - had to have a spinal injection... it is looking like nerve damage from endo and possibly a slipped disc!! MRI waiting. But, I do begin physio on tomorrow. So fingers crossed I will have some much needed relief.

On Thursday last week I had to travel into London, to my place of work to meet with the company doctor and my line manager. Obviously I have been off of work since last August. So the company doctor really needed to see me. He was wonderfully understanding and sympathetic, which I was so amazed about. He was shocked to see me in such a state. I had to use my walking stick and I was in so much pain. But he does not want me to return to work until my next surgery in June... So I wait until after that to meet with him again. It is so refreshing to have a company be understanding. I really was not expecting them to e so - after hearing such horror stories about them when people are sick. But it has been a huge relief off of my shoulders that's for sure!! I an rest easy knowing I still have a job.

Alas, my sick pay in the form of SSP runs out tomorrow - so I have to apply for benefit. I have never been on benefit in my life and am somewhat embarrassed about it - but at the end of the day - I need to eat,live and pay my bills - so I don't really have any other choice. It will not be forever - as I know I will go back to work as some point. I hope I can still do the role I was employed to do.... fingers crossed!!

The start of this week has been OK ish... Monday I saw my own GP to get my updated sick note and more prescriptions. I was also accepted to become a helpline volunteer for Endo UK charity and I have also been accepted fr my equality and awareness course. So Monday was such a positive day. After all of the emotion of last week. I really needed that lift!!

Tuesday I am afraid, I was a bedridden day. Moving only from the sofa to the bed and back again...

Today has been better, I have been out of bed... doing the family washing and such as like...

My laptop is being annoying!! I have had to order a new microphone - as I cant record video 4 without awful background noise. So video 4 will be a little late. I am sorry about that!!

Well I think that brings us all up to date from here.... Physio tomorrow - fingers crossed!!

Love to you all!!!
xxxx