Friday, 29 April 2011

The Power Of Twitter & EndoSisters...

The last year and half has been a rollercoaster to say the least. Both physically and mentally. For the majority of it, I went through each day thinking I was going mad. That the pain must have been all in my head because every single test that I had done came back clear. The only obvious result I felt was I getting was that I was going insane. Confusion was an understatement and even to this day there is still a lot of it around. Confusion from doctors not knowing what was causing the pain, ignorance from other doctors not believing I actually did have pain, confusion from test results, from wrong diagnosis and from myself. Just not knowing what to do for the best. Who to go to next for help. Trying to convince myself that what I was experiencing wasn’t ‘normal.’ That I didn’t just have to put up with it. So I spent endless time googling symptoms (…bad idea). Although I still do it now - I cant seem to stop myself! I think I may have a slight addiction.. Free Advice: Trying to self diagnose when your not feeling well and in an emotional state that endo puts you in is not a good idea!! I learned the hard way! Eventually the laparoscopy went ahead and confirmed I had endometriosis. So what was I meant to do now? How would this affect me? My life? How am I going to feel? Happy I knew what it was, saddened by the fact it was endo. Confusion strikes again. I don’t think I’ve ever had so many questions running through my head at once, to which I didn’t know any of the answers. Totally not in control of it and I didn’t like it. It frightened me.

So I turned to twitter. I had been using it for a while before but decided to make a new account. My aim was perhaps a bit selfish to start off with. To start an online diary of my day to day life with endo, how it was affecting me, how I was coping. I also wanted to raise awareness about endometriosis. So many people I talked to had no clue what it was. And if I’m totally honest, neither did I until I was diagnosed. I didn’t know if I would get any followers or if anyone would be in the slightest bit interested in my tweets about endo but I’ve never been so wrong. I have met and talked to some amazing women that totally get how I’m feeling. If I don’t feel the best I only have to put one tweet on and almost instantly I’ll get a reply. If I need advice about symptoms, medicines, tips on anything then the women I’ve met are so open they will tell you all that they know and try and help in anyway possible. Its unbelievable how supportive total strangers can be yet I feel I’ve known them for years. I think it’s because you can say exactly how you feel without being judged. Even on my worst down days when the pain is unbearable and at some points I just want to give up, my endosisters can just say ‘I understand’ or ‘I totally know how you feel.’ Other people can relate to you so much but they don’t actually understand the pain and emotions you go through daily. I never knew by having people on twitter who instantly knew how you’re feeling would help so much. Make me feel supported. That im not going mad after all. Mainly make me realise that I’m not alone. The endosisters I’ve met are so inspirational that even on days when they too may be feeling awful and in terrible pain, they still have time to ask how I am, crack a joke or even share the tears. Many nights I have logged onto twitter with tears strolling down my cheeks and by the time I’ve logged off I’ve been laughing my head off and still giggling later on that day over something we’ve talked about.

So really, I just wanted to thank each and every one of you that’s asked how I am, made me laugh, cried with me, given me advice, tips and support. I've said it many times but setting up this endo twitter account is the best thing I have ever done. It’s made me feel normal again. So thank you so sooo much. I’ll be forever grateful and here to help in any way I can if you ever need it...x
 
#MyEndoDiary

Thursday, 14 April 2011

New Chapter...

So, it's been a week and half after my second Prostap injection (similar to lupron/zoladex) and I feel (dare I say it...??) FINE! :) Great actually.. Someone asked me this week how I was feeling and I answered 'happy'..I had to double check it was me who wrote it! I even caught myself singing on the weekend! ;) Wow! It's honestly been the best I've felt in over a year! I was umming and ahhing whether to write this blog or not because I didn't want to 'jinx' myself and set myself up for a fail. But I come to the conclusion that it's definitely something to blog about, a cause for celebration! Don't get me wrong, I still at times feel awful. Mind of a 23 year old, body of an 80 year old with all my aches, and I still get days when I can't even bring myself to get out of bed. Other times i'm wide awake til stupid o'clock in the morning, only to sleep a few hours then BANG! Wide awake again. I still need to take painkillers, have backache and my stomach still hurts...BUT....it doesn't last all day! It comes and goes. Manageable! I've even gone once this week without taking any painkillers all day. If I was told this six months ago I would never have believed it. No chance. Zero. Zilch! I would have laughed in your face (or most probably would have cried - yes I admit now i've been slightly emotional these last few months..) Even this time last week when I literally slept in bed all day, had to be woken up by my mother to make sure I ate something, then went straight back to sleep, I wouldn't have believed it. I physically couldn't do anything that day. I think it totalled to 36 hours I slept for. Really think it was my body's way of screaming at me, "STOP! SLOW DOWN!" Helping me to heal. Well it helped lots!


This week, I have had a night out with my three best friends, got to wear my new dress, I even DANCED!! Shocked myself there lol! I'm not quite dancing on the tables yet, (my legs currently ache too much and i'd most probably get stuck on the way up!) But i'm working on it lol. I have been for a beautiful walk around a whole lake, not half of it then stopping due to pain! And I've worked one shift. I've even painted my nails..! I normally wouldn't have gone a day without putting my nail varnish on or changing the colour - I think it's been about four months, shock horror!! But this week im back on top of it! Bright Pink! Yes, I know it's only something small but I havent had the energy up until this point to do it or even care. I've even had two people tell me that my stomach seems to have gone down. This is one of my major symptoms with endo; swollen stomach. I hate it! It literally became really swollen overnight in June last year and just decided to stay. To the point of looking five months pregnant and none of my clothes fitting. Of course I put forward plenty of opposition, but it didnt listen. Endo has a mind of its own. The last few weeks i've been taking water tablets and now for two people on two separate occasions to mention they can see the difference in my stomach - I felt like jumping!! I've also realised this last week that there are certain people I dont need in my life.


"Some people make your life better by walking into it, others make it better by leaving..."

I may have learned this the hard way but at least I've learned it now. Moving onwards and upwards it's been a great week, tomorrow also is my last day in college, EVER! I'm then a qualified childcare worker and i'm soo excited about the new possibilities it can bring. To get a new job that I will love and not hate going to each day..still dreams at the moment, but they're starting to get closer :) This feeling may not last long but I decided to write this blog to remind all of us that the next time we're having bad days that there really are better ones to come. It's just over two weeks until my next injection. I'm really not looking forward to feeling as horrible as I did after this months one again, but I think i'd rather have two or three bad days then twenty nine good/manageable days to follow. Better than feeling ill every single day like I have been. Gotta be worth it in the end, right?! Here's to hoping & new chapters for all of us.
#MyEndoDiary

Sunday, 3 April 2011

Endosisters Are Superheroes

As I was blasting the music out of my headphones this week, this one song in particular really stood out.. 'Alicia Keys - Superwoman'. The words all the way through the song are spot on and can mean so much to so many different people. But I thought how true these words in particular were for us endosisters dealing with endometriosis on a daily basis...






"...Even when I'm a mess, I still put on a vest
With an S on my chest
Oh yes, I'm a Superwoman..."


But somedays, we just have to. No matter how much pain we may be in that day, no matter how emotional or all over the place we are feeling, or just plain exhausted. We just have to carry on and get through the day the best we can. Whether its because we have to work, go to school, college, do the weekly shop, look after children, housework - anything. Even the smallest of things can be a huge mountain to climb at times. But I just wanted to let every woman who may be reading this know that we are superwomen! Every day we get through turns into a week, a month.. At times it feels like we won't even make it past lunch time never mind the rest of the week! But we do. How we do it somedays amazes me - when all I feel like is crawling back into bed and just hiding there. And at times I do! I'm sure it's the same for many of us.. But each day is a new day. We put back on our vest's with an 'S' and get on with it the best we can. Again..! Im proud of myself and all other endosisters for getting through yet another day with endometriosis. Definitely something to celebrate and smile about!

#MyEndoDiary

Saturday, 2 April 2011

Back To Reality

This week was the first week in over a year that I started to feel myself again. Dont get me wrong, I've still had down days and im sure there's more to come, but recently they've been just days or sometimes just hours, not weeks. Started back to work on monday, granted I havent done much there yet but im easing myself in. What i've been finding though is because I work 5pm - 10pm, by half past seven/eight o'clock im exhausted! Been struggling to keep my eyes open and thats not good when working in a call centre! The 'PING' noise when we get the next call through should wake me up though! Then when im home im wide awake and cant sleep! The proper work will start next week so will have to see how I go. Wish It was a job that I loved, then it would make it so much easier going to work and try to cope.. Boses have been asking me what am I going to be like next week? How will I cope? What will I do if im not well on a call? Honest answer...I can't tell you. I have absolutely no idea. Endometriosis doesn't play by any rules. It comes at anytime. It's unpredictable, a complete and utter pain! But i'll have to cross that road when I get to it.


I also started back college. I didn't stay the whole day, yes I only managed a few hours but i've started thinking in a more positive way. If i've had three really bad days in a week now im starting to think well at least i've had four ok days and vice versa. Realised that im not going to be fully recovered overnight and it's going to take time. Patience is needed with endo. Lots of it!! But I think it's good to acknowledge the good days or even the days when you feel 'not too bad'. Little steps girls will get us through. So, I'm going to set little goals for myself and once achieved maybe it'll feel like im progressing that way. All i've been doing lately is focusing on the negatives and it's not doing me any good. So first goal: night out with my girlies next Saturday! It'll be the first time i've been out with them in 2months properly, i'm going to hit the town and paint it red! Ok..maybe not red - but a deep shade of pink at least!!

Even though my stomach is still swollen (gutted it hasnt gone down yet..) I may even go and buy myself a new dress, jazz myself up a bit, get back to my old self because I don't like this version of me at the moment. The boring, staying in, unwell me. I was out nearly every weekend with my best girlies before this endo hit me big time, so enough is enough, it's not going to stop my life anymore, i'm not going to let. I know i'm going to have days when i'll be so fed up of everything, the side effects of the medication will get me down, the endo pain will hurt me..but i can't leave it ruin my life. When those days come im sure I won't be feeling this positive, i'll most probably be depressed, crying and won't be able to see a way forward. But i'll have to. I've stopped living these last few months and I want to get back to me. Back to reality.. So thats exactly what i'm going to do. Endo is not going to control me...x

#MyEndoDiary